Journal History
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Friday, December 28, 2007 10:35 AM CST
Merry Christmas and Happy New Year to all!!
As Nettie put it so well “Boy that day went fast!” She was right, but it was a wonderfully relaxed and nice day. The kids were all up at 6:45 (except Cody- who, of course, actually wanted to sleep in, OF ALL DAYS!!). I was pretty tired, as I was the lucky one who sat up until 1:00 am wrapping everything. Yes, when I say everything, I mean EVERYTHING. I had none of it done before hand. 7:00am felt like I had only been asleep for an hour! But, the kids were amazed at their Christmas findings and they all had a great time opening their gifts. Even Cody understood the concept and couldn’t wait until the next gift arrived. Here is a small sampling of the favorite gifts:
Nettie – digital camera (though it is now going to cost me a fortune on a snapfish account).
Joshua – A WWE DVD (and an older one at that, but he doesn’t care, he just loves to watch them)
Tray – Lord of the Rings PS2 game. He also is the proud recipient of a pair of Heely’s (though they are the generic brand and I’m pretty sure, he’s going to need stiches or a cast before vacation is over a the rate he’s going).
Marriela – a princess scooter. In fact, she hasn’t been off the scooter for more than an hour at a time, and most of that time is when she’s sleep at night. But with the scooter came a new helmet and wrist and knee pads. Well, she can’t possibly use the scooter without the ENTIRE ensemble on at all times, so we spend about 3 hours a day, putting on the pads over and over.
Cody – also got a scooter, but clearly favors the pink and purple princess one better. . . he knocks his to the ground and fights Marriela for hers. His favorite was the Thomas the Tank Engine train set as well as some more matchbox cars. Well, the be completely truthful, Cody’s favorite toy is a stick he found somewhere in the house and loves to threaten the rest of the children with it. But alas, the train and cars are also in the mix.
Everyone is healthy. Since lowering Joshua’s medicine back down, we’ve seen a decrease in the seizures again. He did have one Christmas eve while sitting on Tray’s bed and fell straight backwards, but was fine afterwards. He may have had one today, but we didn’t actually see it. He just appeared and acted dazed and confused for a short time this morning, so we think he may have.
Joshua goes tomorrow for a DEXA scan to see how his bones are doing (he has osteopenia – first stage of osteoporosis) and an x-ray of his hand. The x-ray will tell us if he is still growing according to his chronological age. In 2 weeks we’ll be going to the endocrionolgist who will read the results of these two tests and then let us know when we’re stopping the Lupron injections. Sigh, I really don’t want to stop the injections because then puberty is going to start. There are a couple of concerning things about Joshua going through puberty. One is the fact that I will have to face he is no longer a baby. I know, that’s my problem not his. Two, his seizures are going to go crazy, we’ve already seen what happens when the shot was withheld for 2 weeks. Three, he is going to become physically bigger, making his seizures all that more dangerous. Farther to fall, more weight to land and harder to hit. Four, he’s developmentally NOT ready for puberty. He still stands naked in front of virtually anyone without a care, he doesn’t have the social skills to address his new found feelings for the female persuasion and he still thinks his wrestlers are the best thing since sliced bread. But, mostly, I don’t want him to grow up. Sigh.
And last but not least, we have our new van sitting in our driveway! I actually drove it last night and it was wonderful! We’re going to take it to the zoo today with the kids. Next weekend we’re going to see Peter’s dad and then we’re thinking of taking a road trip to my Mom’s. Yeah!!
We’ll that’s it for now.
Take Care and God Bless,
Renee
Friday, December 21, 2007 3:31 PM CST
UPDATE!!
WE HAVE A NEW 12 PASSENGER VAN!!! LOL It’s a Ford Econoline 12 passenger van (you know, the kind the hotels use and such LOL). We’re going to take out the back seat (the 4 seater) and we’ll be able to fit Nettie’s power chair also! She is going to be so excited. It even leaves us room for our nephew when he comes to visit for the summer and over spring break (I used to sit on the floor to give him a seat). We’re so happy. God is good.
Hi everyone!
Well, this is the last day before the gang is home for a VERY extended vacation. Oy! That’s going to be one long week LOL.
All is going well. The car search is still on and today we’re off to several more car places to see if we can find the “perfect” car for us. It’s just hard to find one that fit’s the 5 kids (3 of whom are getting bigger by the day) and two car seats, as well as has a trunk big enough to fit Nettie’s wheelchair. The newer models all have these short stubby little trunks so we’ve been forced into having to look at older model crossovers or the traditional mini-van (which tend to be to narrow to let the older ones feel comfortable). Peter’s brother keep sending us pictures of mini schoolbuses, luxury limo buses, and conversion vans (which is what we have now). However, the other criteria is that our new vehicle has to fit into the parking garages and none of the above can. So the search continues!
The kids are doing well. Nettie and Joshua have dentist appointments today. This may be the last visit for Nettie at this dentist because in three months she turns 18 and this is a pediatric dentist. Sigh. So sad. Cody has his playgroup at our Church and I’m looking forward to some adult conversation before heading out for the frustrating car search. LOL Tray is doing well and is wearing his pj’s to school today for pajama day.
Next week Marriela has a follow-up appointment with the GI doctor the day after Christmas. Then the 7th and 8th of January I’ll be staying at the Ronald McDonald House with Joshua, Trayvon and Marriela. On the 7th, Joshua will get his EEG on for his 24 hour EEG. Then on the 8th I have a consult with the Sleep Specialist for Trayvon. They will help us decide if he needs to be on the special breathing machine at night called Bi-PAP. This will help increase the level of oxygen in his blood if, in fact, they find it to be dropping to low too many times at night. This is very, very bad for his particular kind of heart defect so it’s possible he may need this. Well see. Then, after that we’re off to the surgeon for Marriela’s post-surgical follow-up. AND then, after we see the surgeon we have to back to the other building for Joshua to have his EEG removed and then we can finally come home.
I don’t know if I told you that I sent Peter with Joshua for his last IVIG infusion. I had to go to Marriela’s class as an assistant. I had a great time and Marriela was so cute in her class! I called Peter only to find out that the access didn’t go well at all and they had to stick poor Joshua’s port 4 times!! Apparently his port has shifted location and the place we’re used to sticking the needle is no longer ok. I am assuming that this happened during one of his seizures. We now have permanent marker over the location of the successful stick and hope that we’ll be able to keep this marked until our next IVIG. Other than the access though, all went well. Peter was all Playstationed out by the end of the day though!
We also had a visit with the OT from the DSO. We went over the needs of each of the kids (Marriela, Joshua and Annette) that are on the waiver. Marriela needs a bed that she can’t fall out of and will absorb her head banging as well as elevate at night when I do her respiratory treatments. We found a nice one as well as a weighted blanket (it actually has weights in it - 8 pounds) to help calm her throughout the night. The bed will raise and lower with the touch of a button and is normal height so I don’t have to stoop all night as I do her treatments. YEAH! Joshua needs a strong gate at the top of our stairs so if he has a seizure at the top of the stairs, he doesn’t fall all the way down. We’ll close it at night so he’s safe as he comes and goes from the bathroom. We’re also looking into options to make the bathtub situation safer for him. He has had a couple of seizures in the tub while showering and it’s very dangerous (even when supervised, we can’t stop him from falling, just be there to assist him once it’s over and to turn off the water). We’re thinking maybe one of those molded, walk-in tubs so he has much less space to fall and the molded seat can’t tip over if he has a seizure. And for Nettie, she’s going to get a replacement mattress for her bed. She has the original cruddy plastic mattress that came with the hospital bed and only meant for short term use. That was over 3 years ago! It’s all saggy and cracked so she’s going to get a special mattress that will relieve the pressure on her hips and back, as they ache all of the time. We’re also putting railings along the upstairs hallway to make it safer for her to walk up and down the hallway at night in the dark.
Well, that’s it. I have to go bring the bagels I got each classroom as their Christmas gifts LOL to the school for Marriela and Tray. I was all set, but Peter ate one of the Veggie cream cheeses for breakfast so I have to go and get another one!
Have a Blessed Holiday Season .
Peace and Love,
Renee
Friday, December 21, 2007 3:31 PM CST
Sunday, December 16, 2007 7:11 PM CST
Happy Holidays Everyone!!
I pray this finds you all happy and healthy and ready for the holidays. We’re moving along. The weather has been a bit uncooperative in getting out to get what I need but for the most part, all is ready for the “big day”. Peter is outside shoveling (again) and it’s that heavy, yucky snow. We had a snowblower, but it went kupputy (spelling??? LOL) a couple of years ago. Maybe next winter we’ll go for another one.
Poor Cody has had another rough round with an upper respiratory infection. He had one night of croup, a runny nose and then the asthma started (sounds very familiar since we just went to the ER last month with the SAME crap). So off to the doctors Friday morning, diagnosis. . . left lower lobe pneumonia and reactive airway disease. Back on those lovely steroids and another antibiotic, as well as nebulizer treatments. He is doing better, but still sounds like crud. In addition, he’s also having night terrors again. They’re awful to go through and last about 20 – 30 minutes. He screams for a drink and mom and dad and sometimes to go out of the room and then back to the bed all the while trying to throw himself to the floor, off the bed, out of our arms and kicks and screams and thrashes all over. It’s an exhausting experience, but once it’s over, it’s over and he sleeps the rest of the night. I’m hoping it’s the steroids that are triggering them this time. He’s had them before and we had prayed they were over. Apparently not yet LOL.
The rest of the kids are doing well. Marriela has continued to have a wonderful recovery with only an occasional complaint about her tummy and usually because she won’t leave her steristrips alone and needs a new band-aide. Tray is making progress in recovering from his cold and seems to be doing better so I’m waiting to take him to the doctor. Nettie is going tomorrow for her PPD because hers expires this week and she’s going away to Casey’s Place for the weekend and needs a current one. And last but not least, Joshua. He had a big seizure in the bathroom yesterday and he has HUGE bruises all over his right side. I still don’t know how that happened because when I ran to him (I heard the fall from Marriela’s room) he was on his left side, crammed into the corner of the bathroom. I checked his whole left side and head and found no signs of injury. Yet today, when helping him get ready for his shower (he needs full supervision now for his showers and even when he goes to the bathroom in case of these very situations) I found bruises under his upper right arm, on his back and his right hip. It’s also possible he had another big seizure that we didn’t witness and he fell against something. Did I ever tell you how much I hate these seizures!!
Today we were invited to light the Advent at our Church. We had the whole family go up and I shared a little about our Christmas traditions, Peter read the reading and Trayvon and Nettie read a responsive reading passage. They did a great job. Joshua was going to read, but we had a hard enough time getting him over his fear of going up in the first place that we just nixed his reading so I did it for him. Marriela even helped out by helping out to light the candle and then said Merry Christmas as we wrapped it all up. The kids did a great job!
Well, that’s about it for now. We’re still looking for our next van, but hopefully next time I update, we’ll have a new car!! YEAH !
Well, until the next time, Take Care and God Bless,
Renee
Tuesday, December 11, 2007 4:47 PM CST
Hi everyone!
Marriela went to school today! She was mad as heck that she couldn’t go yesterday (and mad on Sunday that I wouldn’t let her go to Church). The teacher wrote that if they hadn’t known she had surgery, they would have been none the wiser. She can’t bend over yet and still hasn’t really gotten her appetite back yet (though the steroids for the asthma are making her feel hunger, she just doesn’t eat a lot). But, she’s in her own bed, going to school and playing like crazy at home.
The rest of the kids are doing well. There were some glitches with the plan for Saturday’s pickup. Cody had an awful day with his constipation. He was in a great deal of pain most of the day. Peter wasn’t able to take the kids to their Christmas party because of Cody’s screaming. Then, we determined, oh so painfully, that we have a blown head gasket on the red van. UGHHHHHH! So he brought the Cadillac out to get us (for those who don’t know, the Cadillac is 18 years old and held together with duct tape for the most part LOL)). As soon as we hit the thruway, the muffler blew. It was, by far, the noisest ride in a car that I have every been in. Marriela slept most of the way home thanks to a nice dose of coedine right before we left. Next week, we’re trading in the red van and getting a 2005 Pontiac Montana!! It’ll be the newest car we’ve ever had! LOL
Nettie is doing well, and will have a follow-up eye appointment in the near future. This appointment will assess whether or not she needs to have surgery on her eyes to correct the swollen blood vessels in the back of her eyes. She is soooooo hoping they say that all is stable (we know that the problem can’t reverse itself, but we just don’t want it to get worse).
Joshua’s doing well and has only had a few seizures since his last infusion. In fact, he’s had none in school in over a week! He sees the endocrinologist this month and will have a hand x-ray and dexa scan. The hand x-ray is to be sure that his bone age matches his chronological age – this will help determine when we stop his Lupron injections (that will allow puberty to restart). The Dexa scan will determine if he still has osteopenia/osteoporosis. If he still does, it doesn’t change anything, but once he starts puberty, the testosterone he will begin to generate will help with the bone situation tremendously.
Joshua had his first Middle School Concert last night, and after a rough start getting him off to the concert (HATES to get into dress clothes – to confining LOL) he did a fantastic job (even if he did only lip sync most of the concert. . . hmmmm).
Tray continues to have “cold like” symptoms now for almost a full month straight. I am making him an appointment for next week to have him looked at. Hopefully all is well with his heart, he tends to have a hard time with chest colds once they settle in, but with hearts, problems can present with cold like symptoms before the real “heart” symptoms kick in. He’s been staying after school with his class on Tuesdays to study for the State ELA assessments. He says he’s doing well on them. . . I guess we’ll see soon!
Cody is finally “cleared out” after a lot of Miralax, apple juice and a profoundly painful bowel movement. I wish I could help him find a happy middle ground. He’s either loose or hard, no normal. Just part of the neurogenic crap, but would be nice to see it all gone. Though I have to admit, it’s much better and he isn’t needing daily Miralax anymore to stay un-constipated.
We’re decorated and ready for Christmas for the most part. Got some shopping to do, but even there, the funds are getting low and therefore the shopping is almost done! LOL
Lydia’s Closet is getting closer and closer to getting ready to open. I would LOVE any children’s clothes donations you may have (very gently used) for both boys and girls. In exchange you’re welcome to come and “shop” for anything you may need that’s already in the closet. I just have a few young boys things, but lots of girls stuff sizes 3T to 5 and most is brand name. Just e-mail me and I’ll give you the details!
Well, that’s it, gotta get ready for a Christmas party with some girlfriends tonight.
Take Care and God Bless,
Renee
Saturday, December 8, 2007 10:29 AM CST
Hi everyone,
Well, Marriela is like the quickest recoverer I've ever seen. She is coming home today!!! She has been up and walking all over the floor, eating food and isn't even needing that much pain control! Peter and the kids are coming out after the Christmas Party today to get us. I'm so excited!! I don't have to miss Church, or Joshua and Cody's appointments or Joshua's concert or MOPS! And Marriela doesn't have to miss any school if she is up and moving around by Monday with no need for pain medicine. AND we're going to go get our Chirstmas Tree tomorrow!! We thought we wouldn't get to go until next Wednesday and poor Nettie was so very dissappointed about that, so she will be very, very happy.
I guess everyone else is doing well, no complaints from Peter anyways!
I'll update more from home!
Take Care,
Renee
Friday, December 7, 2007 2:31 PM CST
Hi everyone,
I'm sitting right in Marriela's room right now and typing this update. The hospital has this cool system where you can use the tv as a comupter with a keyboard and all!
Marriela did great, she started off shakey, as yesterday she had an asthma attack and we had to start her on high dose steroids. We honestly didn't know if she was going to have the surgery today or not, but the surgeon told them, that she HAS to have it and that now is better than later. On Wednesday we were also told that, because she is so skinny, she would be better off with the open surgery (2 inch incision) than the laproscopic (4 1/2inch incisions) scattered all over her abdomen. So we agreed. Well, anyone who knows our kids, knows they don't like to do it the easy way, and he ended up having to do BOTH open and laproscopic! Apparently, as her gallbladder was failing, her intestinal tract was filling up with air and such, so he couldn't see her gallbladder very well with the bigger incision and had to resort to the laproscop anyways. The good news is, she is now and inner bellybutter! He used her bellybutton as one of the enterence points and repaired her umbilical hernia at the same time (personally, I just thought she was a big outtie, didn't know about the hernia LOL). She came through with flying colors and is very comfortable with the Morphine and Toradol on board. She's sleeping with the new Hello Kitty pillow Peter and I got her in the gift shop.
Joshua had his IVIG infusion on Tuesday (yes, we went in the middle of the snow storm). Trayvon came along for companionship since they had a snow day. His port access went fantastic and the infusion went off without a hitch. Seizures are much much reduced and he's back to his baseline. Dr. Henry and I agreed to increase his Lamicatal and we'll see if that helps stop what seizures remain.
Tray has a consult with the Strong Memoral Pediatric Sleep Clinic. I've been a bit worried about him, as his vomiting is back again and he breaths very heavily all the time with any exhertion. It's nothing that screams, PROBLEM, but it's often enough Peter and I are both wondering what's going on. School continues to do well though!!
Cody is doing great. A little bit of a new cold coming on, but he seems fine lung wise so far!
Nettie is a nervous wreck that I'm gone from home for a while. She relies so much on my ability to "organize" things that she worries when I'm not there, that things will fall apart. I'll call her in a bit and surprise her.
Tomorrow the kids are all going to go to the Immunology Christmas Party at Upstate. Then on Sunday it's Church shere Tray is doing "gift making" to raise money for the the Children's Church. On Monday Joshua has a dentist appointment and Cody sees the ENT for a quick check of his tubes. Monday night, Joshua has his first concert in Middle School. I'm so sad I have to miss it, but even if were home, Marriela will need me at home.
Well, that's it for now!! I'll update as she gets closer to going home.
Take Care and God Bless,
Renee
Wednesday, November 28, 2007 5:12 PM CST
Hi everyone!
Well, the date is set for Marriela to finally say good bye to this awful little gall bladder of hers. She has been very uncomfortable since yesterday and actually asked me to put a band-aid on her belly (to cover her “pokey”) right over where her gall bladder is. The surgeon is going to try to do it laprascopically but if her gall bladder is in bad shape, then he will have to do the traditional bigger incision.
Joshua has only had 2 seizures since his infusion last Tuesday! One of them was today during science class, and the aide called it a “medium” sized one. Not sure what that means, but he came right around after it. By this time last infusion, at the lower dose, he had already had 8 seizures! What a difference. So we’ve opted to not go the helmet route yet, we’re going to change some meds around instead. We’re going to stop one of his meds and start a new one called Zonegran. We’ve been on most of the meds, but this one is a new for us. I’m praying that combined with the IVIG we may once again get to a seizure free state. We haven’t been there in almost 4 years, so it would be wonderful to see.
Nettie walked all the way to the library tonight!! She said she was going to walk back as well, but I told her to call me if she got tired. As fate would have it, I was just finishing up my grocery shopping when she called and said I hadn’t given her enough money for her late dues ($20!!!!). So I went to pay the fee so she could check out and she admitted her feet were KILLING her and could she have a ride home. Well of course sweetie! LOL So, for now, she’s going to practice walking from home to the library as long as the weather is good and then we’ll work on the return trip in the spring.
Tray is doing great and the teachers are all very impressed with him this year. He’s gotten an 80% or higher on every one of his spelling tests and doing very well in math as well. His cold is much better and I think one more night and he’ll be all better in the AM.
Cody had all of his testing for his early intervention services he gets. I’m pleased to report that he has now been dismissed from PT. She still sees subtle left sided weakness, but nothing that slows him down or diminishes his skill levels, so she has to let him go. His speech therapist and I are both frustrated because, as luck would have, he aced all of the speech tests as well! However, there is a huge discrepancy between what the test looks for and actual speaking skills. As far as Cody has come, he still can’t “talk” in a conversational mode. He pretty much can label things and that’s it. Even then, his labeling is virtually unintelligible and despite doing very poorly on the articulation test, he still passed (boys are allowed more mistakes and there are only a few questions for each age so at 2, he only needed to get a few right to do well). The therapist is going to still support his need for services and has written a very strong letter of support for continued speech. We’ll see! LOL
I spoke to soon about our van. On our way to Elmira on Sunday, it started leaking transmission fluid all over. As long as I keep pouring fluid in, it runs well. Good thing I’m handy with a funnel! LOL
Oh yeah, one last thing. I just thought I would share my exciting news that Lydia’s Closet, one of my pet projects is almost up and running! Today the sweet custodian at our Church put up the clothing racks on the wall and I bought hangers and some wall decorations. For those who don’t know what Lydia’s Closet is. . . it is an exchange system for clean, gently used children’s clothing. You bring in the clothes that no longer fit your children, hang them up and then take the new sizes you need. No cost. It will also serve as a place to pull together clothing for families in need (fires, displacement, etc). I’m all set except clothes. I think some of the mom’s from the playgroup I attend will have some in the next few weeks and I have some I’m bringing over tomorrow. I am so excited that this is working so fast! If only my playground project would be as quick! LOL
Well, that’s it for now!
Take Care and God Bless,
Renee
Saturday, November 24, 2007 6:29 PM CST
Hi everyone and Happy post-Thanksgiving!! We had a very nice turkey day with my mom, sister, dad and nephew. Tomorrow we are going to Elmira to spend the day with Peter’s dad for a nice dinner of spaghetti and meatballs. We have so very much to be thankful for, even as we remember those who are no longer with us. Peter’s mom is missed tremendously, she was a great woman and we feel her absence resonate at each family gathering. But, she would be proud of the kids, her kids and her family as a whole. That makes me happy to know.
The kids are doing well. Joshua had his staples out on Tuesday and then we headed out to Rochester for his infusion. His port access was something I was dreading, as we had such a terrible experience last month. . . we were praying hard that Janet would come to our rescue this month. Sure enough she was there and happy to do the job. We took him into a quiet room in the infusion chair, removed the Emla and she did the poke, no one held him, he didn’t cry or yell and I did nothing but hold his hand away from his chest. Unfortunately, there was no blood return and no flush. Rather than torture him with moving it around, we just removed it and started again with a new needle. He, once again, clenched his teeth and shut his eyes and in the flash of a moment it was in and working beautifully!!! YEAH for Janet! At times like that, you realize just how much certain people in your child’s life mean to you. Janet is one of those people. The infusion went great, the doctor came to visit and we got a good dose of Science homework finished. Dr. Henry has admitted that they don’t know how the IVIG is helping Joshua. He doesn’t question in the least the fact that it IS helping, they just don’t understand the mechanism. The reason for this confusion, is the fact that with all of the other trials that used IVIG for seizure control, the protocol entailed using high doses and then, once control is obtained, withdrawl of the IVIG. Not a tapering, just a cold turkey withdrawl. For the other syndromes that responded to IVIG, a return of the seizures did not return. However, in Joshua’s case, even the small reduction in dose was enough to cause his seizures to spiral out of control in a matter of days and then weeks. So now the team is discussing the possibility that Joshua is truly having an “auto-immune” mediated seizure disorder and that instead of “boosting” his immune system with the high doses of IVIG, he may in fact benefit from suppression of his immune system with methotrexate or another powerful immune suppressant. If he is truly having an auto-immune syndrome, then these treatments should work. Once I was able to finally close my mouth and begin to wrap my head around the concept, I declined any decision making until he was once again stable seizure wise and firmly reserved the right to decline any other treatment avenues unless the IVIG stops working. But, with that said, if they are right and these other options work, then we need to re-evaluate his immune system further and discuss why he has an auto-immune disorder in the first place. One more piece to a very, very complex puzzle. . . but I like puzzles, lucky for Joshua! LOL
The rest of the kids are doing well. Tray is starting a cold and has already “thrown-up” several times due to all of the coughing, but his lungs are clear and it certainly hasn’t slowed down his appetite or activity level! Marriela see’s the surgeon on Wednesday for her pre-op evaluation and none to soon. Her poor belly is more and more swollen each day. I’m now putting sweats on her because her jeans are to tight now. She also had to stop eating her favorite thing in the world today, pizza and bread sticks. Her belly hurt too much. She’s also napping daily again and that’s always a tell tale sign of her discomfort. Cody is doing great and is even making tremendous strides in toilet training. If we leave him diaper and pantsless, he will go to the bathroom (number 1) 100 f the time! But, if I put on the training underwear, then he goes. Getting there though. LOL Nettie is really putting a lot of stake in Santa to bring her a laptop computer. I wish from the bottom of my heart I could make that happen, but it just can’t. She is such a hard worker, such a loving and caring and obedient and thoughtful child, who wants so much to be a part of the outside world and can’t. She has learned how to surf the net, and even started to type a book on Word. Maybe next year.
Well, that’s it. The van is still up and running and the Caddy is now pretty much at a stand still. Peter has been putting in resumes everywhere and hopefully we’ll hear something very soon. We have several Christmas parties to attend with the kids at the various clinics and agencies that we work with so the next few weekends will be busy.
‘Til next time!
Take Care and God Bless,
Renee
Saturday, November 17, 2007 10:02AM ET
November 17, 2007
Hi there again,
Just thought I'd post some pics I took of Joshua as he enjoyed his ER trip. LOL Also thought I'd let you know that Marriela is being scheduled ASAP for a gall bladder removal. SIGH. She has been. . . oh how shall I put this politely, FARTING like a full grown man and her belly is very swollen. She isn't in any additional pain it would appear, but her symptoms are increasing, not decreasing. So sometime between Thanksgiving and Christmas we'll have one less gall bladder in the house to contend with.
We also have a plan of action to address the need for Joshua to get his larger dose of IVIG but reducing his risk of stroke. He's going next Tuesday for his normal FULL dose and then we will start on an every 2 week schedule with a 1/2 dose. This should bump his current level up quicker and it will give him more consistent levels, hopefully resulting in far better seizure control. His VNS is also going to be evaluated on Tuesday to be sure the battery is still working good and to tell us approx. how much time it has remaining before he needs it changed. I'm thinking at least one or two more years, but we having it running at maximum capacity and this wears the battery out much, much faster. We also swipe him at least daily if not several times a day and that also wears the battery down.
Cody is once again all junky, but I'm virtually positive it's his reflux that's back. This is the same scenerio as when he was an infant, he'd reflux and stay conjested. So we're going to see the doc next week and restart him on his reflux meds to see if that helps clear his chest.
Tray and Nettie are doing great, Thank GOD!!! LOL Tray is off to a party today and then he has his Harry Potter Party tomorrow with his friends. He's very excited!
Well, that's it for now. Gotta go drug the children! LOL
Take Care and God Bless,
Renee
November 14, 2007
Hi everyone!!
Oh the fun just keeps getting more fun here. . . yet another visit to the ER, this time with Joshua.
My mom is in town. I had the whole day cleared to hang with her as we rarely get to do so. We just finished breakfast and dropping off pictures to get developed at Walmart, when Joshua’s school calls. He’s hit his head in the bathroom and I need to come get him.
I arrive at the school, thinking that maybe, he is fine and will be able to stay. I sign in, find the nurses office and see his teacher waiting for me outside a separate room from the nurses office. Not a good sign. I walk in and find Joshua sitting in a wheelchair COVERED in blood. The nurse is doing her best to get the bleeding to stop and clean up his skin and face. He is pale, but is answering my questions fine and says he actually doesn’t even have a headache. He tells me he had a seizure.
Out to the car with the wheelchair we go, Mom waiting to see what’s happening. I call Peter and tell him we have to go to the ER, he needs stitches, probably 5 or 6. We pick him up and the four of us go to the grand ol’ University ER once again.
Joshua not to happy in the waiting room.
They evaluate him, put on some numbing cream and send him for a CT scan (which we’re now assuming was normal, since I just realized they never called us back). 
Joshua getting his CT scan
Back to the room to wait for the numbing cream to work. Doctor comes in and cleans his head (very subjective word there: clean, since his head is still plastered in blood) and then proceeds to put a staple in, Joshua flips out. Now we pull out all the stops and use the lidocaine injection. He screams bloody murder. Then we move right to the next 4 staples and then try to make the bleeding stop. It doesn’t really stop, so she slaps a nice thick dressing on it and wraps his head like you see in the old Civil War movies. He’s covered, the bed is covered and the gown is covered in blood, but we’re going home. Yeah!
The wonderful Civil War head wrap.
He proceeded to walk independently all the way to the car, stopping for a giant chocolate chip cookie on the way and begging for a BK happy meal. He came home and quickly found many things to do to occupy his time. I would say he has made a full recovery.
Peter and I, on the other hand, now realize the severity of the situation. We realize now, he needs someone with him ALL the time as well as the very real possibility he needs to wear a helmet. I, personally, am having a profoundly difficult time with this concept. I strive so hard to ensure my children lead as normal a life as they can despite their individual challenges. Nothing slows us down as a family, nothing stands in the way of the kids doing most normal kid things. They dress, look, and for the most part act, like most kids. A hockey helmet is going to change all of that Joshua. I don’t usually get riled by things, but this time, I’m shaken up. He needs to be protected, but he needs to be normal. . . how do you allow both? It’s becoming increasingly obviously, you can’t.
Joshua has paid his dues, he has battled his share of problems, he has fought hard and won hard, he has tried his absolute best and yet, despite all of this, he gets knocked down again and again and again. I want to homeschool him, but know I can’t personally, nor would he allow it. I want to cure him, but don’t know how. I want to protect him and know that it will never be enough. I want to make everything all better and know that it’s not possible. I want to be a normal mother to my normal 12 year old son and that was all taken away on March 4, 1998 when they told us that he wouldn’t survive a massive brain tumor. We had glimpses of Joshua’s future before he was diagnosed. It was so very, very bright. He was big and strong, way above average in height and weight. He was so very, very smart. I was reviewing my testing skills for my new job as a speech therapist and brought home all of the language tests to practice on Joshua with. He scored in the very above average range on all of them. He loved sports and music. Today, Joshua struggles with tying his shoes. He has 5 staples in his head from landing on the urinal while doing something as simple as washing his hands. He can’t hear the words to his music without his high powered hearing aids. He has an IQ of 60. He has a port in the right side of his chest and an implant designed to stop the seizures in the left side of his chest. He has scars all over his body and head as battle wounds.
Now he will have yet another physical reminder of his battle, started almost 10 years ago. He will now have a helmet on his head.
Take Care and God Bless,
Renee
Friday, November 9, 2007 1:01 PM CST
Hi everyone!!
First thing I need to do is say a very big and (belated, sorry baby) HAPPY BIRTHDAY to Trayvon!!! He’s now 9 years old and fully enjoying his reign as the last year of single digits. He had a little party at school and then we had family over on his actual birthday, Wednesday night. Tomorrow he gets to go for our family dinner as is the family tradition. ALL of the kids so far have picked the Spaghetti Warehouse as their favorite place for the past several years, but not Tray. . . He wants CHINESE FOOD! LOL No surprise there, so we’re going for a Chinese Buffet where he can get his shrimp and lobster and rice and chicken in the “brown stuff”. Next week he’s having a Harry Potter party with a few of his friends from third grade.
Peter and I are getting ready to wipe this computer and re-format it so we’ve been pulling off all of the stuff we need to save. I have over 3,000 pictures on this computer alone and have another one with even more pictures on it!! It has been so neat to see the kids and how much they’ve grown. I do my scrap booking but only chose a few pictures from each outing we go on and don’t go back and see all of the others that weren’t “scrapbook” quality. . . But there is something so neat about seeing those other pictures and the silly faces and closed eyes and the places they’re scratchin’ or pickin’! LOL Nice little walk down memory lane.
Cody wasn’t all that better as of yesterday and that was one full week since the whole congestion/croup thing started, plus 5 days of steroids and too many nebulizer treatments to count, so off to the doctors we went. He reluctantly (and with some persuasion on my part) put him on an antibiotic to treat mycoplasma pneumonias. So often doctors forget that this little bug is very, very common, isn’t touched by the antibiotics commonly used for ear and sinus infections (thus the kids continue coughing and such despite their ears and sinus’ improving) and rarely organizes enough to show up on a chest x-ray. Well, we’ve had 2 doses of Zithromax and today his congestion and coughing have already decreased by over 50%. He hasn’t needed a neb yet today (though I will give him one while he’s taking his nap in a minute just to keep things loosened up). So I think the little rug rat is on his way to recovery.
Marriela’s asthma has improved dramatically in the past few days and we are now back to PRN treatments only. She is still doing very well with her meds and her work at school is truly shocking to me. She came home with a sentence made of words cut out from a paper and proudly read “I see the cat.” Yes, my friends, there were some teary moments later that night as I shared the moment with Peter. He thought I was weird, he’s probably right. Hmmmm.
Joshua continues to have one seizure a day and has had to go to the nurse several times this week to sleep for over an hour. However, I just made the connection that I had started him on Melatonin about a week ago and yes, it definitely helps him get to sleep better, BUT it also appears to make it harder for him to “wake up” fully as well and he was crashing at school. I held the dose last night and this morning he did seem a bit more bright eyed and bushy tailed. So we’ll see. When you give as many meds as we do in this house, you forget to think of the obvious sometimes! OOPS.
We stopped in today to see Annette at her job location. She looks so cute in there working her little butt off! The workers love her there and want to know if she is old enough to actually work for real (not just through the school program). I told her we’ll wait until summer and if the offer still stands, then she can work a few hours a day for a few weeks in the summer. She is soooo excited! She’s talking non-stop about “when she moves out” and “when she goes to college”. I’m thrilled she is so self-confident that she wants to move on and have an independent life. I see so many disabled children who either don’t or can’t move out and Nettie is in neither category.
We’ll that’s it for now. Just wanted to throw a quick update on here and hopefully you’re seeing new pictures at the top of the page! I have to update the slideshows, but that seems like an eternity right now, so we’ll see on that too. LOL
In my thoughts and prayers,
Renee
Sunday, November 4, 2007 3:42 PM CDT
Hi everyone,
The drama continued yesterday. Cody’s croup evolved quickly into a big asthma attack! So we visited the ER all Saturday. I also shared my concerns about his eye pain and Dr. Kantor was very supportive and ordered a CT scan of his head and eyes just to rule out anything big and bad. Unfortunately, they got all focused on the CT scan and no one was addressing his breathing. After a bit, a nurse wandered in and I mentioned that he was having a difficult time with breathing and what were the plans to address that? She took one look at him and immediately hooked up to the monitor and checked his SATs. They were only 90 nd he was breathing 50 breaths a minute (normal is 20). She listened to him and she heard definite wheezing (which I already knew was there, thus the reason we were in the first place!) Within 5 minutes they give him a megadose of steroids (oral) and nebulizer with abuterol and atrovent. All three of these meds make a child VERY hyper! Then the nurse says to me “do you think he’ll fall asleep any time soon?” Ummmm, let’s think about that one! Well, we gave him his meds, and after listening to him again and seeing his SATs were still only 90 hey give him another nebulizer. While doing that neb a nurse we see often each time we go came in and visited with us. While were chatting, guess what that little stinker did?? You guessed it, he went to sleep. . .after all of those adrenaline boosting drug! I think he was just so tired from breathing so fast and hard for so long that he couldn’t settle down, once the meds started working, he felt well enough to actually sleep. Sooooo, while he was partaking in a nice little snooze, I wrapped him up and carried him down to the CT scanner, laid him down, where he was scanned in less than 5 minutes and never stirred, carried him back and finished the rest of his nebulizer and watched the TLC channel. After about a ½ hour one of the nurses said they were just about to finish reading the CT scan and then we would be on our way home. Well, I look up at his monitor and see SATs of only 91 FTER all of that treatment. I asked if they thought maybe he needed a chest x-ray. YES, I had to request a standard diagnostic tool for resparitory distress, very, very frustrating. A few moments later an aide says it’s time to go to x-ray. . . oh really, wondering why that is? LOL. So I carry him down sound asleep still and then put him in that torture device called the Pig-O-Stat used to hold small children in position for chest x-rays. By now he’s in a full blown ‘roid rage and spitting at me he’s so made. What a way to wake up! Well, to make an already long story shorter, all was clear. Apparently there is no answer for his eye pain and he “just” had an asthma attack. Now we have the wonderful experience of high dose steroids at home for five days as well as every 4 hour nebulizers (which, by the way, he despises MORE than the x-ray torture device!). He had a full blown ‘roid rage today after arriving home from a birthday party for our good friends children, Evan and Nathan. He screamed about ½ way home about how he wanted “OUT OUT OUT OUT!!!” So, we get home and he wants to STAY IN THE CAR!!! He screamed for over a ½ hour at the front door until he almost lost his voice. And then I had the audacity to remove the 12 pounds of pee diaper he was toting around in. He tried to put that nasty thing back on for another 5 minutes until he figured out that it wasn’t going to happen.
We had a wonderful time at Craig and Colene’s little boys party and the kids had a great time bowling. Cody is just like Joshua in that he loves to bowl. Cody was very, very into getting his ball and sending it down the ramp towards the pins. He bowled 7 frames before he finally lost interest and found the video cars to drive.
Marriela has turned the corner and she is doing much better with the continuous nebs daily. I have been praying that we could avoid steroids for her (should have been praying for Cody as well, but didn’t think in a million years I needed too LOL).
Joshua has had a seizure each day since is infusion, so it appears that the lower dose is NOT going to hold him. I have to e-mail the doctor next week to see how he wants to handle this. We may have to move to every 2 week dosing so he doesn’t get as much in each dose, but at the same strength. Or we just keep going with the dosing schedule we were, just knowing we are accepting a possible risk of stroke. It’s a damned if you do, damned if you don’t. The IVIG treats his seizures so well, but may cause a stroke. If we don’t give it, or go to a lower dose, then he has many seizures a day. These choices are always difficult to make.
Nettie and Tray are doing great and for that we are immensely thankful!!
Well, gotta go make some food for little ‘roid devil now. UGH! LOL
Take care and God Bless,
Renee
Friday, November 2, 2007 9:24 AM CDT
Well, Cody woke up the croup the day after Halloween and Marriela's asthma is now in full swing. She is now getting nebs AM and PM. Last night she needed an extra one at 3 to help control the constant coughing and this morning she threw up for about 45 minutes (just phleghm from all of the coughing). Once she got most of the phleghm out she was MUCH better and I did send her to school. The way she sounded when she first woke up I never thought she'd be off to school! We also started an AM dose of her Risperdal and yesterday she had a very attentive day and came home happy. She fell asleep on the couch by 5:00, but I think that's as much a result of not feeling well as it was the meds. Cody has a terrible nose and is very "tight" but still coughing and playing and no fever, so no doctor. Nettie saw the doctor yesterday and I was shocked at how well her medicines had worked!! She had a viral load of 10,400 in August and less then 3 weeks later after re-starting her meds, her viral load was down to only 130!! We're praying that yesterday's labs will show a <50 viral load which is as low as the current labs can measure. She looks and feels great! Tray and Joshua are feeling good. Joshua has had one seizure so far. He was playing with Tray outside and fell backwards into the bushes. He was not happy that he was in the bushes when he woke up. But he was fine.
Well, that's all in the past 2 days. Sometimes I need to journal daily so I don't have these marathon updates! LOL
Have a great day!
Renee
October 31, 2007
Happy Halloween everyone!!
We just got back and the kids are all in bed. This is a very late night for them. For those who know us, know that our kids go to bed at 6:30 normally. They watch a movie which ends between 8 and 8:30 and they’re out cold by 8:35 pm normally. So to be just going to bed at 8 is a VERY late night for them! LOLOLOL (the early bedtime is as much for my sanity as it is for their health. All of the kids need a lot more sleep than the average kid, but I also need “down” time and they have my undivided attention from 6 am until 6:30 pm and then it’s me time.)
The kids all had a great time trick or treating this year. Nettie even came with us in her power chair and it was so nice to have the whole gang together. Joshua was actually not even in costume, as his wizard hat I made him didn’t fit him right so he wouldn’t do the outfit at all. We had an extra “scream” mask but we were only two houses into trick or treating and the mask was to hot for him. Tray was an awesome wizard, however, his aunt and uncle secretly thought I had dressed him as a pimp. You’ll have to see the pictures when I get them to appreciate their humor. Marriela was Winnie the Pooh and Cody was the most adorable Eeoyre ever. He would say “ick ate” and then reach in (whether he was invited or not) and take the biggest item or a handful of treats. When he left he would say “unk” (thanks). He was getting very tired, Tray was almost crawling and Joshua had been beefing about being tired about 3 blocks into the treating. So we came home. Marriela could have kept going and going, but that was pure sugar and adrenaline. Once home she crashed very, very hard! Actually, it was a very late night for us! Usually we’re home and in bed by 7:30!
All are well for the most part. Marriela continues to do well on her new med but seems to be running low on the levels by mid afternoon, so tomorrow we’re starting an AM dose as well. Here’s hoping the miracles continue! She is struggling with night time asthma symptoms already and now they’re starting to creep into the day time too. We’re doing Pulmicort and Xopenex two times daily now to try and head off the more difficult to treat attacks. In addition, she has daily belly aches still. It doesn’t really seem that the actigall medicine is doing to much for her. But, I’m not convinced that a big surgery to remove the gall bladder when we don’t know if it will cure her pain, is a good idea or not. I’m going to give the meds another month to see.
Joshua had his IVIG infusion yesterday. They accessed his port and he stayed still beautifully until it wouldn’t draw back and they started messing around with it, and re-accessed him quickly. However, still no blood return. So they removed the needle and we got the bestest nurse in the world to come and access him, but by this time he was beyond consolable. He was adamant he wasn’t going to do it and we finally had to hold him down and Praise God, Janet was able to get it on the first try! And that was on a very MOVING target!! He was surprised at how it didn’t hurt, but still very, very fearful of anyone touching it. Hopefully, next time, it will be only Janet, the same needle she used and only one stick. Other than that though, he did great. We did lower his dose from 1mg/kg to only .8mg/kg. Apparently, one of the dose related side effects is stroke. The IVIG is very thick compared to blood and therefore when you use very high doses, such as Joshua is using, it technically can build up in the small vessels and block blood flow, resulting in a stroke. Thank God he has had no ill effects AT ALL with any of the infusions, but we decided to see if we can still maintain seizure control with a lower dose. If not, we’ll decide how to handle it at that time. So far, so good.
Cody did see the eye doctor. They could find nothing wrong. He has perfect vision as well. Last night, he woke up screaming that his eye hurt. I am comforted by his lack of eye issues, but not 100 onvinced that all is fine, as the doctor said. Only time will tell though and there is no use worrying about something I have no control over. That’s so much easier to write and say than it is to do. Peter wants a CT scan and I’m starting to think it wouldn’t be a bad idea either. I don’t know if his doctor will go for it though, as the eye doctor felt that there was nothing wrong. She’d be ordering it to “comfort the parents” more than anything else based upon current medical findings. We’ll see, I have a call into her for tomorrow.
Tray is doing awesome. His schooling is great as is his health. The only thing we note, is as he gets older and bigger, the more out of breath he is upon exhertion. This is normal and to be anticipated, as his heart has to work to pump higher and higher quantities of blood throughout his body. We just let him self regulate his activity level and watch for any strange signs of distress. Here’s praying he never has any.
Nettie has an appointment tomorrow finally with ID to get her labs drawn. She has been feeling great and I have no worries at all about her lab work. But it will be reassuring to see good results. She goes to the eye doctor next month to monitor those blood vessels she has at the back of her eyes. She is very scared that they are going to say she needs surgery to freeze them so we’re praying that they just remain stable and there is nothing more to be done to them. Other than that, she ‘s doing great!
At last update I had shared that the red van had been FIXED. . . I had lied. We only had it 3 days before we felt the transmission slipping again. By the time we brought it back, it could barely get out of first gear. I am once again pleased as punch to let you know that it’s back again!! This time, the transmission feels wonderful and the back brakes no longer sound like a semi-tractor trailer coming to a stop. How embarrassing was that! So we’re a one and half car family again. Much better than the half a car family we were for the past month or so! LOL
Thursday, October 25, 2007 8:17 PM CDT
Hi everyone!
Well, I wasn’t actually right about the puke/poo free zone. The night I did the update, I spent an hour helping Nettie clean up after waking up in a big mess. She has poor sensation as it is and diarrhea and she do not mix!! The next day she tried to go to school, but I was called just a half hour later to pick her up. She was such a trooper though, and never let on that she was not feeling well!! That day was also her IG infusion and I’m happy to report that she recovered after only one day and was off to school the next day.
Last weekend we took the kids down on Friday night to visit with Grandpa (Peter’s Dad) and then to see Peter’s old high school play in their homecoming game. The day started off with Marriela falling BACK asleep after saying her belly hurts. However, you should know that Marriela’s poor belly hurts all the time so no one thought anything until she slept in until 8 AM!! That is by far, the latest she has ever slept, so we knew something was up. She thought she was going to get sick, but after about an hour of cuddling, she felt well enough to try a pumpkin farm. We had a very nice time and there was no further complaints at all from Marriela. After the pumpkin farm we went to the football game where they all had a good time (as long as you were stuffing them full of junk food!). However, just before half time, Cody decided he had seen enough football for the day and spent the next half an hour trying to run free of me and Peter. So we took off and came home.
Unfortunately, our red van, wasn’t, in fact, fixed. The transmission was slipping severely the entire trip to and from Elmira, so Peter turned right back around on Sunday evening and took it back to the garage where we bought it and told them once and for all, put in a NEW transmission!!! Tonight I dropped Peter off at bus station (since we only had one car) because he is going to Penn State tomorrow morning for the Saturday game against Ohio State. Penn State is doing great now and it should be an awesome game to be at. I am meeting my good friend, Kathy, for a 12 hour scrapbooking event. I haven’t scrapped in over 6 months and so this is going to be very relaxing!!!
Nettie and Joshua are going to Casey’s Place this weekend and Tray is going to be spending Friday night and all day Saturday at Camp Good and Special Times for a Halloween sleepover. So I’ll only have Marriela and Cody Friday night and I plan on taking them both to the school dance.
I just spent the last 2 hours making Joshua and Tray’s costumes. They are both being wizards. I found an old blue, velvet bed spread at the Salvation Army. I washed it, cut it and made to awesome capes. I bought two Dollar Store brooms, took off the bristle part and hot glued two foil covered moons to one and two foil covered stars to another for staffs. Tomorrow I have to somehow create two pointy wizard hats with the remaining blue velvet and some trim. Wish me luck!! Marriela is going to be Winnie the Pooh and Cody is going to be Eeyore. These are the Disney costumes and they are sooo cute. Joshua was eeyore when he was 2, Tray was eeyore when he was 2, Marriela was eeyore when she was two and now Cody is going to wear it as well at 2 years old! I hadn't realized how long we had the costume and yet it still looks brand new! We also have a Sylvester, Cowardly Lion and Bozo the Clown. I usually take the extras into the school so kids who don't come with one, have one for the parade around the school. It is shocking how many kids parents either can't or don't send in a costume (and not for any religious reason). I remeber the year we let a little girl named, Samantha, in Joshua's first grade class, wear the Eeyore costume (she was very small). Her eyes were as big as saucers and she strutted around that place like she owned it. I was so very sad to know that she wasn't going to get to go trick or treating due to her family circumstances. Some children have it so rough.
I also have to take Cody to the eye doctor tomorrow. Of course, it couldn’t have been nice and simple like a small scratch. No scratch was seen with the videofloroscopy. Tonight he scared me a lot because he started screaming for no reason and kept rubbing his forehead and told me to turn off the lights and tv. Thank God he let me turn the tv right back on and started laughing at AVF (he loves that show). I have to admit I am very nervous and Peter’s not here to ease my fears, so I’ll be putting all of my energy into packing my scrapbook stuff and making the costumes to pass the time quickly. Please say a prayer for Cody. I haven’t actually told anyone what I fear (and probably completely with reason LOL).
Well, I better hurry up and finish this before the laptop battery dies. I’ll update again when I know more about Cody’s appointment.
Take Care and God Bless,
Renee
Monday, October 15, 2007 7:22 PM CDT
Hi everyone!
Welcome from the PUKE/POOP free zone!! It seems I was the final link in the virus and now it’s finally gone! Here’s praying that’s the last stomach bug we have to deal with for a long, long time!
We’re enjoying the nice fall weather, that’s actually feeling like fall! I was getting a little tired of sweating in the middle of October. LOL Today Cody had his hair cut after his PT at the park. He’s doing very well in PT and speech. His speech therapist was here this afternoon and though, he has a long way to go (he has many new words, but most are so difficult to understand, you wouldn’t know what they are if I wasn’t around to translate lol), he’s made huge progress already and I’m proud as punch of him. The only other new thing with Cody is a new complaint of Right eye pain.
For those who have gone through having a child with a serious medical issue, you can appreciate how hard it is to NOT let your imagination go wild with your other kids. I really, really work hard, all the time, to not allow myself the ever present undercurrent of fear that lets me think maybe, just maybe, Cody will have cancer too. I have read to many Caringbridge pages where one child has a brain tumor and then a sibling has one too. Or Leukemia, or neuroblastoma, or , or, or. It happens. Cody is almost the same age as Joshua was when he was diagnosed, 30 months and two weeks ago he starts screaming of eye “urt, urt.” whenever the sun hit his face. Now he’ll even make me turn the tv off in the morning or at night or cover his right eye to watch tv. Sometimes he wakes up in the middle of the night and hold his eye and cry and scream. But, I try not to let the fears creep in and assure myself that he just scratched his eye while playing. I thought I was alone until the other day, Peter shared with me he is so scared that we’re approaching the “magic” month of 30. He too, has been working hard to beat back those fears that I thought I was fighting alone. Thursday we have an appointment with the pediatrician. She knows our history all too well and hopefully will take the time to look, and find the answer to his pain, so we can allay our fears.
Joshua has been doing very well. He’s only had one more small seizure since the other day. He got his 6 week report and he’s doing pretty well since he’s missed almost 10 days of school the first half of the semester. Hopefully, those absences will start to slow down now that he’s got the port and such, so other than his 24 hour EEG in January, he shouldn’t need to miss more than one or two days a month.
Nettie was suppose to go to her clinic appointment, but because everyone was so sick I cancelled the appt and rescheduled for next week. I’m going to take her in for her blood work on Thursday though so that we will have results for the appointment. She too is doing very well in school and her work placement LOVES her! Several friends of mine have run into her at Joanne Fabrics and thought that she was just a regular old employee there! Isn’t that cool? She is going to be able to get a good job when she graduates because she is such a great worker.
Marriela went back to see Dr. Pelligrino to discuss her “not so good” responses to the various ADHD meds we’ve tried and to see what else there is to offer her. After an extensive conversation we agreed that many of her issues are mood related not focus related (though that is an issue also). So he went in a direction I was never expecting. He suggested we try a drug used commonly for children with autism. But these children also experience many of the same issues Marriela is, though she is 100% NOT autistic. She is very anxious, has incredible mood swings, can’t express her emotions and has multiple tantrums a day. These are all very common with autistic children as well. So, Friday night we began a trial of Risperdol. I thought, here we go again, another nightmare to endure to prove her negative reactions to meds. But, I’m happy to report, that there have been NO negatives, AND we’re seeing some definite positives! She is falling asleep virtually problem free. This in itself is a truly amazing feat! Normally, she needs MANY reminders, escorts and threats to keep her in bed. Then she proceeds to cry and bang her head repeatedly for another hour before finally falling asleep. Now, she goes to bed, and for the past 4 nights, has needed NO reminders to stay in bed and has fallen asleep in less than 30 minutes with NO head banging! Not only that, she’s waking up HAPPY! This is another miracle. Marriela is notoriously miserable in the morning and after naps, we dread having her wake up from a nap! LOL And finally, her note from school today (I haven’t told them yet she is on a new drug) said, and I quote. . .”Marriela arrived at school so much more alert and was very on task and oriented to the classroom work. Much more than in past few weeks. . .” Isn’t that awesome! So instead of addressing her ADHD, we’re addressing her moods by stabilizing them and addressing anxieties and aggression and she is doing awesome! I’m so happy for both her and us, as it’s very frustrating to see your little girl be so miserable so much of her day and not be able to do anything to help her.
And finally, Trayvon! He’s doing awesome! He’s doing awesome in school. He’s doing awesome cardiac wise. He’s doing awesome at home. He’s just, in general, doing awesome. How’s that for an update. LOL
And finally, drum roll please!!!! Our red van is fixed!!!!! YEAH, YEAH, YEAH! We haven’t been going anywhere as a family because we can’t fit everyone in the car. In addition, the poor Cadillac has a new problem virtually every day (today the right front wheel began to grate each time we turned the wheel to the left. . . doesn’t sound good at all!). What sucks the most is that this is one of our favorite times of the year! We LOVE pumpkin farms, hayrides, haunted houses and such and we haven’t been able to go to any since we can’t all go. But, this week Peter is picking up the van we are going to pack in as many pumpkin farms as we can between now and Halloween! LOL
Well, that’s it for now.
Take Care and God Bless,
Renee
Tuesday, October 11, 2007 AM 9:21 EST
Well, here's praying the last of that darn bug is behind us. I had my enjoyable experience with it the same night Joshua had it. By the time we got home from Rochester, and after having Joshua yack in a bucket for half of the trip, he was looking A LOT better!! In fact, he was hungery and wanted to eat! I didn't let him since I was starting to feel a bit queasy and didn't want to have to clean up any more yuck. He was fine and had a great nights sleep and felt fine yesterday. I thought it would be a good idea to eat a nice big peice of Veggie Lover's Pizza with my slightly queasy stomach. . . oh did I pay. I paid dearly ALL night long. But, today I feel great and it seems to have passed quickly! Marriela and Nettie are the only two left and I pray that they're not going to get it, as I am so done with the stuff!! LOL
Joshua did have 2 seizures about a half hour after getting home, probably because he lost some of his morning meds when he got sick the first time. He hasn't had any since. They're all off to school and the house is so blissfully quiet! Peter took Cody to school and he's picking him up on the way home from the gym. So I'm heading upstairs for a long hot bath!
I don't know if I had mentioned we did hear back from the sleep study (not from the ENT, who it should have been from, but from the pediatrician). The Ped wants us to consider a CPAP machine because his sleep study was actually a bit worse since having his tonsils out. I asked the cardiologist about this and he said he didn't think it was necessary. My concern with this is that we don't see the cardiologist for another full year. In addition, he hasn't had an Echo in over a year already. So if there is any problems arising from the sleep apnea (SA can cause the right side of the heart (ventricle) to fail because it causes it to work so much harder to keep the level of oxygenation in the blood up even when the body stops breathing temporarily. Tray only has a right ventricle so I don't want to stess that thing at all!). So I'm not sure how I feel. We have an appointment with the ENT in early November and we'll go over all of our options at that time.
Well, that's our update for now!
Take Care and God Bless,
Renee
Tuesday October 9, 2007
Ok, didn’t get the other update posted before we got out here to Rochester. I was actually happy to say good-bye to that sick smelling house and get into a nice rental car that I didn’t have to worry about breaking down on me and spending some nice time with Joshua. As I was pulling into the parking lot, Joshua says quietly, “I don’t feel very good.” This was followed almost immediately by profuse vomiting all over the back of the rental car. He was miserable. I had to leave him in the car and run upto the clinic to get some pj’s for him to change into and a bucket. He was freezing and crying about how much he hurt. I felt awful for him. We got up here and it was decided it was better for him to get his infusion vs. not getting it so they got him hooked up (which went BEAUTIFULLY!!) and gave him a big dose of IV benadryl. Benadryl is also an anti-emetic so it will help with his nausea as well. He’s been sleeping almost since we got here. No fever, just feeling YUCKY!! I swear the dang bug is going to stay with us all fall at this rate!
Cody was still having diarrhea as was Peter this morning! This is Cody’s 6th day of it and Peter’s 4th. Tray seemed to clear it almost instantly (one big barf and he was done) and Marriela (as of yet) seems to have escaped it. I have been taking a shower every afternoon after changing the sheets and washing laundry to try and keep myself clean. I’ve also been using Lysol like it’s going out of style!
Well, that’s my nice and gory update. Hopefully next time you hear from me, it’s a healthy house!
In my thoughts and prayers,
Renee
10-7-07
There are only a few things that I really hate as a mother, and one of those things is the stomach flu!! While I was out and about with some other 5C moms, Peter called to let me know that Cody had lost his cookies (or in this case a bowl of Cocoa Krispies - yes people, it had been a lazy night since I was going out! LOL) all over the bed. Then he called again, to let me know that he had lost the next meal and was now having dry heaves about every ½ hour. I took my time coming home since I really couldn’t offer him anything more than Peter was and I was having a good time. But, alas, I arrived home and went into nurse mode. Luckily, he was the only one sick and it seemed to come to an end around 4:00. He was looking and feeling good the next morning and off to school they all went. It should be noted here that Nettie’s nurse, Stacey, called in sick with a stomach flu as well and she reported that her little girl was up all night long vomiting as well. Uhmm, guess who the Typhoid Mary was! LOL Anywho, Cody was looking good, but I didn’t take him to his LCC playgroup because I didn’t want to take a chance that he would infect some of the little, little guys at the playgroup. Good thing I didn’t because later that day, tons of diarrhea began and didn’t slow for a minute until today (actually, it’s still here, but he’s eating and drinking and acting normal again, so he’s on the mend). To make the whole thing that much better, Tray starts looking a bit pale and sweaty right after dinner last night and says he has diarrhea. . . Oh boy here we go! About 20 minutes later, he’s in the bathroom tossing is mac n’cheese (yes, I really do cook healthy meals, just not this week apparently!) Then Peter takes a turn and has spent the last 48 hours either in the bathroom or lying down sleeping. Did I say I HATE stomach bugs!! Praise God that the rest of us so far have avoided it and pray that we have seen all the puking and pooping we’re going to see for the rest of the year!
I took the kids (except Cody - who felt a 4 hour nap was in his agenda) to Church and then to the Wegman’s Playground. We had a nice time riding the tram and then went and enjoyed some ice cream for the last time this year at Vickie’s. It was a beautiful day and I’m glad I got to spend several hours out of the sick smelling, sick feeling house!
I also got Nettie’s braids all out last night, washed and conditioned her hair and then blow dried it straight. Tomorrow I’m going to use the straightening iron to press it and make it nice and smooth. She decided a couple of months ago she wanted to do away with the braids for a while and let it be free. She sees the NP this Thursday to go over her last set of labs taken after we restarted her meds as well as to draw a new set to monitor how well they’re working now. Hopefully, all is going well still.
Joshua had a nice size seizure today as we were leaving the house to go to the park. He went straight back and didn’t even sit down first this time. Typically, his seizure causes him to lose awareness, his muscles lock up in a semi sitting position and falls because he loses his balance in the semi-sitting position (this seizure works really well when he’s already sitting, not so good when he’s standing). But, today he went straight back! Very scary and definitely puts him at higher risk of slamming his head off of things. So now we’re back to no stairs unsupervised. At least he had it BEFORE the playground where it could have happened while on the swings, standing on the high playground equipment or bouncing on the teeter totter (it’s a stand up kind and has a very big fall to the ground). Over all though he’s doing really well. We go on Tuesday for his first infusion where we will actually access his port (it was accessed last time while he was asleep during the surgery). So pray that he handles it well and is much less afraid and resistant than for the IV!
Monday October 2, 2007 9:07 PM EST
Well, the excitement never ends here! LOL
Tray woke up today and after struggling to get out of bed, he fell a few steps down the stairs. I joked with him about how he needs to open his eyes before walking down stairs and didn't think anything else of it. Daddy made him a big bowl of spaghetti (left overs from last night) which he enjoyed. But moments later he comes to me and tells me he feels funny. I ask him for more info and he tells me his arm is numb and his lip is all gone. My heart started racing, as I was thinking STROKE almost immediately. But, after just another short moment he says, "now my head hurts." Though I am still thinking stroke, I calmly rationalize that this is, in all liklihood another migraine. So we go downstairs and take our Motrin and Pepsi and wait to see what happens. It was only a few minutes (maybe 10 at the most) he starts crying and writhing all over the couch and you can tell the pain is awful. I then spent the next 2 hours rubbing his poor head and holding a bucket as he tossed his spaghetti, pepsi, motrin, morning meds, and lots of other unidentifiable stuff. Then, as fast as it came, it was gone and he fully recovered and off to school he went. I can tell you that I would have been wiped out from all that pain, crying, and vomiting. But, no, he refused to lay down so I sent him to school and he had a great day. Because of his heart I can't help but think how easily this could've been a stroke. I also worry about his microcephaly is eventually going to cause more and more pressure in his head. But, so far the migraines come and they go, and so do we. LOL
Hi everyone,
Hope this finds you all well and happy. We’re doing well here for the most part LOL. As always, there has to be a “little” excitement to keep us alive and on our toes.
Nettie is at Casey’s Place for the weekend and is very, very excited about it. Her good friend, Missy is also there and they have a great time together. It’s interesting at how well Nettie and Missy get along since Missy is a quadrapalegic and has to blink her eyes to let you know yes and no. Yet, Nettie is able to decipher virtually everything Missy wants and the staff LOVE having Nettie on the same weekend, as she helps them figure out Missy’s wants and needs. Way to go Nettie! She even would like to have Missy as her housemate once we get to that point. I went to Annette’s Back to School Night and had a very nice conversation with her teacher and speech therapist. They are going to mix things up a bit for Nettie throughout the school year to expose her to many opportunities to have to “speak” to adults and kids she normally wouldn’t have spoken too. This is in an attempt to get her to open up more and become more comfortable asking people she doesn’t know questions. This is a hard thing for Annette so the more chances she gets to do it, the better!
Joshua gave us a wonderful scare this morning. I don’t know what this kid is trying to do to me, but he insists on aging me WAY faster than he is suppose to! I was trying to “sleep” in this morning, when I heard a very, very loud bang followed by very, very loud crying. I ran downstairs to find Joshua screaming and Daddy holding him tightly. Apparently, after setting his cereal bowl down on the table, he was trying to move the chair with one foot and was leaning on the corner of the dining room table with the opposite hand. His hand slipped off the table while talking to Daddy and since he was on one foot, he spun around and cracked the back of his head right on the corner of the table. This a farm table with heavy oak boards and a relatively sharp corner, so it hurt A LOT!! He has one heck of a goose egg, but he’s now up and acting fine and eating a Dunkin’ Donuts chocolate muffin (yes, these things can cure virtually anything! LOL) with no problem. So, other than a huge knot on his head, he seems fine, Peter and I on the other hand have lost a few more years. Sigh. LOL. Other than today, he’s been doing great. School is going well and we’re working on getting him more and more comfortable using his new sign language interpreter.
Tray gave the school a work out yesterday. I don’t think I reported last week when Joshua had his birthday party, that he had gotten a new football from his friend, Sean. The boys took the ball outside and had a nice game of tackle football (anyone that knows our backyard, knows we have a steep hill right smack in the middle that makes any game that much more work! LOL). Apparently, he stepped into a hole and twisted his ankle. Peter came out and carried him into the house and we iced it and gave him some motrin. He was really “working” the injury and favoring the other leg. So we told him he couldn’t go to Sunday school if he didn’t walk on it. Needless to say, only moments later, he had his shoes on and was “walking” on it quite well. It rapidly improved and no further mention of the ankle was made again.
That was until yesterday. I guess in gym he re-twisted his ankle. Then, over an hour later, he decided it hurt SOOO much that he had to throw a fit and cry and yell in the middle of Social Studies. So much so that the nurse had to come with the wheelchair, the principal tried to comfort him, the whole class looked on with great concern and the teacher’s dropped everything to make him comfortable. He was taken to the nurse’s office where he was placed gently on the bed and ice applied to the ankle. His teacher then informed him that he would let the kickball team at recess know that he was unable to play for a couple of days. WELP, wouldn’t you know, he magically got better within 20 minutes and SKIPPED down to the cafeteria and proceeded to laugh and joke with his classmates! Yeah, his teachers were a LITTLE upset about it all and he definitely did NOT get to play kickball. This weekend he is also having “quiet” time to allow that ankle to fully heal so we never, ever, ever, ever, have this happen again. Apparently he has begun to protest writing in school again, and wouldn’t you know it, they had just told him to write a 3 sentence paragraph right before the awful pain struck. Yep, you guessed it, he’s written me 3 paragraphs so far and it’s only Saturday. Not sure how many more I think I need to complete his story, I guess we’ll see how “sorry” he is LOL.
Marriela is taking her medication like a champ and has yet to have any relief. But, this medicine could take some time, so for the interm she is just getting some cuddles when her belly hurts. Here’s praying she gets relief from the meds and we avoid surgery. But if surgery is needed, pray that the pain goes away after the surgery is done. She is doing great in school and the teacher’s love her. She is very, very distractable and pretty much has to have a 1:1 aide to keep her even remotely on task. But she tries hard when she’s focused and really wants to please everyone.
Cody is talking more and more and is even trying to put two words together all by himself! No mind you, if you didn’t know what he was talking about, you would NOT be able to understand his speech so he has a long way to go still. BUT, he is talking and he’s making progress almost daily in what words he’s willing to try to say. He has been very happy and healthy and is loving his preschool class. He also went to MOPS with me and we both had a great time with the new group we joined. Cody didn’t’ even say good-bye, he just walked away and started playing with the toys, what a relief it is to have a child who is happy to go off and play so I can enjoy myself sometimes too. J
Well, that’s all of them.
As for the cars, well we lost another transmission. The red van, which had been giving us trouble after getting home from Rochester this last time, has now been towed to the garage. Peter was driving it when all of a sudden, it just quite shifting and went into cruise mode in the middle of a two lane highway. So he coasted into a parking lot and I came to pick him up in the Cadillac. Now the Cadillac, likes to stall whenever you slow down, so I had to restart the car 3 times on my way to get Peter at the broken red van. The white van, my “Curkgang” van, has now been donated to Kars4Kids and is no longer here. I was sad. I LOVED my white van. The garage thinks they can fix the red van so please pray that happens soon and they fix it for good!!
Well, that’s it.
Take Care and God Bless,
Renee
Friday, September 21, 2007 7:11 AM CDT
Hi everyone,
I needed to get on here and wish my “little” boy, Joshua, a HUGE. . . HAPPY BIRTHDAY!!! 12 years ago we were blessed with a gift from God. I wasn’t suppose to be able to have children (yep, we’ve proven that wrong twice now LOL). And then, several times during the pregnancy, we were told that we were going to lose Joshua, yet he was a strapping 9 lbs 2 oz and 21.5 inches long (and two weeks early) at birth on September 21st 1995. He did have a severely swollen kidney, and needed surgery at 3 months old to re-implant his ureter so his kidney could drain, but otherwise, was wonderfully healthy.
Joshua’s been through a lot, to much to recant here, and yet he remains a happy, innocent, child who’s best friend in the world is his brother, Trayvon. He still loves the WWE, football and playing with his wrestlers. He can live and play in an imaginary world of death matches, cage matches and “hell in the cell” matches, and then stop in his tracks and sing along with his baby brother during a Barney or Backyardagain show. Though he now protests the need for an IV, he still doesn’t say anything about things like surgeries, or his monthly injections or his blood draws or his x-rays or the overnight EEGs, etc. etc. He just goes with the flow. So, HAPPY BIRTHDAY sweet boy, we love you very much.
Ok, as for an update. Joshua’s infusion went wonderfully and we were outta there in good time. I was home by 3:30, just in time to do Nettie’s homework with her before Tray and Marriela got home (and the chaos began LOL). Joshua still has some bruising at the site of the port and the catheter placement as well as a good amount of swelling. I’m watching it closely to be sure the doesn’t look infected, but he complains of no pain and other than 2 doses of Motrin, he’s never asked for any pain meds since the surgery.
We heard back regarding Marriela’s nuclear scan. The results were, unfortunately, what I thought they were. I knew, looking at that screen, that her gall bladder wasn’t doing what it was suppose to do. They go by ejection fraction (how well the gall bladder contracts) to determine function. Anything less than 35% is usually referred to the surgeon. Well, her’s was 11%. So, it’s virtually, non-functioning at this point. However, the GI doc was reluctant to send us right to the surgeon because there are many studies now that show us, despite removing the gall bladder, the belly pain remains. There is clearly something they don’t understand, but can’t fix. So, since her primary symptom right now is intermittent belly pain, and since this may or may not improve despite surgery, we are trying a medicine. We’ve agreed to do a 3 month trial of high dose Actigall to see if we can “jump start” her gall bladder. It’s not likely to happen, but worth the try. If, after 3 months, there is no improvement or she has more pain vs. less, then we will go to the surgeon. She’s to little at this time for the laparoscope so she’d have to have the full abdominal incision which will require a longer recovery time. Other than that though, she’s doing great in school and seems to really enjoy it!
Nettie and Tray are also enjoying school very much. Trayvon’s attitude thus far is 1000% better than it was at this same time last year. He’s making some nice friends and in general has really started to blossom socially. Nettie likewise, has really started to speak up and interact with her peers. She even shared with me that felt better about talking to people and she wasn’t as nervous as she usually is. I was so happy to hear her make that observation and to acknowledge she is improving in this area. We’ve been working hard to get her out of her shell and it appears that she is now starting to poke her head out! LOL
Cody is also doing well. He has started his 2 year old program at our Church and seems to be really enjoying it! We are also going to our first playgroup today with a group of moms from our church. Next week, we start MOPS again and he’ll get to go to the toddler class where they do circle time and crafts in addition to play. So he’s a very busy boy. LOL
We’ve discovered that we really need to get rid of our “new” big red van because it just has to many different things wrong with it. It’s our only car big enough to fit all of us and it has to be reliable and it no longer is. So we’re looking into trading it in for another mini-van if possible. A little prayer in this area would be great. Cars this summer, have been a major issue for us and we’re so mobile and need to go so much, that without a reliable form of transportation, things would be very bad here. So I’m praying that this happens soon.
Well, that’s it for now!
Take Care and God Bless,
Renee
Tuesday, September 18, 2007 9:13 AM CDT
I'm here at Strong Memorial with Joshua and all went great! He got his port and the surgeon agreed to access it for us at the time of surgery. This meant that we didn't have to stay in the hospital (we were only doing that to hold onto the IV they started during surgery so he didn't have to be stuck again today for his IVIG). So Joshua and I went to the RMH house last night and had an amazing meal and a great night's sleep plus one wonderfully hot shower. Well, I enjoyed the great meal and the shower. . . Joshua had a peanut butter sandwich and completely poopoo'd the idea of even washing up before bed. LOL That's ok, he gets to shower tonight at home, and boy does he need it! UGH. When we got here today for his infusion, and we started to get his meds ready, he looked confused. Normally we take him into the procedure room, put him in a chair and hold him down. However, today, we left him right in his room and didn't have any extra staff around. Finally he said, "Is it going to hurt? Where's the IV?" Everyone laughed, because no matter how many times we told him he wasn't going to get one anymore, he didn't believe us! He even watched another little boy who had his port accessed so now he won't be scared at his next infusion.
Well, I hate to leave him alone to long in case he does have a seizure.
Take Care and God Bless,
Renee
Friday, September 14, 2007 11:39 AM CDT
Hi everyone,
One week down with school! They all seem to be enjoying their classes very much. Tray is much happier this year, though yesterday he did say he wished he could see a falling star. So I asked him what he wanted to wish for (since we all know that’s what you want to see a falling star for LOL) and said “So I could wish that there was never, never any more school.” Now mind you, this was while he was doing his homework and I was working him hard on writing his numbers so they are legible. . . so I’m SURE that had something to do with that wish. LOL Marriela’s notes home share that she’s learning how to write her numbers and match varying colors (ie. Various shades of red are all “red”). She struggles very much with writing. So far she can make a circle (has been doing this for about 2 years), an M – not always perfect, but clear enough, and a lower class A – which is just a circle with a line LOL. So as you can see, we have a LONG way to go. BUT, she knows ALL of her letters upper and lower case, can recognize numbers 1 – 12 and knows all of her colors. Her teacher stated that only 1/3 of the class has all of these skills mastered! YEAH for Marriela.
Joshua and Annette are both doing well at their schools. I spoke with Nettie’s job coach last night and she is very nice. Nettie is going to be working at Joanne Fabric and Crafts. She will learn how to stock shelves, read UCP codes, label incoming product for display on the floor and how to sort and file patterns (you know, the type you use to sew a new dress- something I’ve NEVER done LOL). She starts Monday. Joshua is in regular Science, Health, Social Studies and gym and is taking a special reading program called Read 180 (it’s 1.5 hours a DAY). In addition, he will also have a “job” in the school to work on improving his eye contact with people. He has had 8 seizures so far since his last infusion, but still much less than before we started so we’re very happy. He’s only had one at school!
Wednesday I took Marriela and Joshua for their appointments. Joshua saw the surgeon who was very nice and agreed that the Port was a good choice and would do it on Monday. However, since Joshua has already had one port and 2 broviacs/hickmans, AND he can’t use the left side at all due to the VNS implant, he was concerned about accessible vessels. So he ordered an US of his neck veins to be sure we could, in fact, get a line in on the right side. We did the US right after Marriela’s HIDA scan. Marriela did GREAT for her scan. She was so very, very scared of the IV but they had her in the papoose and it worked wonderfully. The IV was in on the first try and the scan was easy, all she had to do was lay on the table with the camera over her. We talked and talked and talked for about an hour. Then they let her up for 15 minutes. Then we went back in and she had one more injection (to cause the gall bladder to contract) and layed there for another ½ hour. All in all it wasn’t nearly as awful as I thought it was going to be. I do have to say however, the tech told us a normal gall bladder will get smaller as the medicine helps it to contract and get rid or the radioactive isotope. A poorly functioning gall bladder will either stay the same size or get bigger. I’m no doctor, but even I could tell you, that poor gall bladder did NOT get any smaller, and in my opinion did get BIGGER. So we’re waiting to hear the final reading. I’m assuming she needs to have the whole thing removed. But we’ll see.
One other note, I did receive an e-mail and Nettie’s labs are all going in the right direction! I’m so happy and relieved that these medicines are doing their job and we don’t need to start all new ones. Phew.
Ok, that’s it for now. Car situation is still shaky, but we’re getting where we need to be when we need to be there, so that’s all I ask. LOL
Gotta go pick up Marriela and Joshua for their eye exams!
Take Care and God Bless,
Renee
Sunday, September 9, 2007 3:05 PM CDT
Hi everyone,
HAPPY BIRTHDAY CODY!!! Today, my youngest has now turned 2. I can't believe he's 2. It was such an emotionally draining day, the day he was born. My spinal never took and I had to have general anesthesia, my husband had to leave the room and couldn't even be with our baby on his arrival (I still cry everytime I think of that fact), my pain was a 12 on a scale of 1-10 when I did wake up, Cody was taken to NICU right after I saw him (for less than 2 mintues)and I didn't get to see him for another 12 hours. I was so very disappointed in how everything went. BUT, once I had him in my arms, all that anger, sadness and frustration melted away. He was small, happy and beautiful. He is still happy, beautiful, just not so small now. LOL HAPPY BIRTHDAY BABY!
School is back into full swing and I am happy to say that the kids are all pleased so far with their classes. Marriela comes home very, very grumpy but I expected that since she is only use to a half day program. Tray is very pleased with 3rd grade and seems to have completely recovered from his anger over his 2 years of second grade tirad. Nettie is taking child psychology as her "regular" class and begins her job next week. They told her that SHE has to call in, if she's sick or has an appointment, NOT mommy. LOL I think it's great. Joshua has come home in a great mood, but isn't very forthcoming about his day, we take the good mood as a good sign. His notes from the teacher indicate he's doing well.
This week Joshua goes for his surgical consult for his port, and I have the unprecedented joy of trying to hold Marriela down for her IV and nuclear scan (all two hours of it!) for her gallbladder. Joshua is going to be bored out of his mind during this time as well, so we have to bring LOTS to do for him. Prayers for patience would be greatly appreciated! LOL
Cody had his meeting with the neurolgist and I am happy to say, barring any unforseen circumstances, we never need to go back. YEAH!! He feels there are subtle neuro symptoms, but most are gone or improving steadily (ie. speech delay, urniary symptoms, trunk weakness, etc.)so he has no further suggestions or information. Therefore, see ya later alligator! One doctor down. LOL
Everyone seems to have either allergies or a cold, it's hard to tell this time of year, but I have taken stock in Scott Tissues with the number of boxes we've gone through! LOL
I had a very nice night out with a bunch of mom's who have children with various issues (mostly cancer) on Thursday. It was a mix of mom's who ranged from still going through treatment to having lost their child, and everything in between. It's cathartic to meet other mom's who understand and relate to what you've been through.
Well, it's a short entry this week! Have another great week and I'll update after the appointments on Wednesday.
Take Care and God Bless,
Renee
Friday, August 31, 2007 6:14 PM CDT
Hi everyone,
Well, another week has come and gone and we’re getting REALLY close to school time! YEAH! I love my children more than life itself, yet I can’t wait for them to have something, other than myself, to entertain them all day long. LOL
We had a busy week and a little more car trouble.
First, Joshua had his IVIG on Tuesday and did great. He is on the schedule for September 17th to get his port put in and will stay the night to get his infusion the next day while the IV from the surgery is still in place. He has his surgical consult on the 12th. Then on the 14th he’s going to see the eye doctor to have his cataracts checked and to be sure those pretty brown eyes are still seeing crystal clear. He and Marriela will be going together. He goes next week to see his school and classroom for the first time. I’m nervous but much more relaxed since his seizures are so much less now. Speaking of seizures, he did have one more seizure right after I updated last time. Unfortunately it was in the shower, and the baby was in there with him. In addition, he had just finished lathering himself up from head to toe so when I tried to lift him off of Cody he just slid right out of my hands. On the other hand, Cody slipped right out of the way ! LOL He hurt his side a bit on the spout but otherwise came out of it none the worse for the wear. He did have one more Wednesday but I count that one in this current 3 week stretch between infusions, so we’ll be able to compare as to how many he has during each 3 week interval.
Marriela is NEVER going to go on Adderall again! She did not do well at all on it and all she could do was cry. It was actually very sad to see, so we’re going to just let nature guide us and abandon the medication route. Marriela went to see the GI out at Strong and they feel that her pain is from her gall bladder. So she was scheduled for a special nuclear scan today but we had an automobile issue (see below) so we had to reschedule. Now she’s going to go on the same day Joshua has his surgical consult, that’s going to be a very LONG day. Apparently the scan takes about 2 hours! I have no idea how I’m going to get Marriela to sit through a 2 hour scan without seriously drugging her.
Tray has been doing great and we did his sleep study Tuesday night. The tech did say he saw some signs of central apnea but he wasn’t sure how severe it was or if there even really was, because all he sees are the monitors. It needs to be scored before we really know what it all means. Hopefully, IF there is a problem, it is easy to fix, but better yet, there is nothing wrong. Other than that, he’s looking forward to getting to school to see his friends!
Nettie is doing great. She is getting her weekly infusion right now as I type. She has been going out daily for trips to the park, the library and around the neighborhood by herself. She loves the freedom the power chair allows her and now I am so glad we went for it! I haven’t heard back yet from her NP on her last set of labs. I’m praying that all is well there.
And last but, again, not least, Cody. He went out for his urology appointment on Wednesday to Strong. He had a renal ultrasound and an abdominal x-ray and I had brought all of his scans done here in Syracuse with me. The doctor was very nice and said that Cody has “the potential for issues if he stays on his current path.” However, he went on to explain that Cody has a “hyper reflexive” pelvic floor that affects his ability to control when his rectal and urinary sphincters contract. Instead of staying open the whole time he is going (which is the normal pattern), his muscles slam shut in mid effort (stooling or urinating). This makes it hard for him to empty his bowels and bladder completely. But the truth is, he could just learn to live with it and learn how to “control” the contractions OR he could outgrow it. So he is recommending close monitoring via renal ultrasounds every 6 months to watch how well his kidneys are doing with the additional bladder pressures. This is so much more in line with what I was thinking than what the doctor here in Syracuse had wanted. She was talking of doing daily catheterizations to relieve the pressures and for him to take a daily antibiotic. The new doctor did say that EVERY time Cody has a fever, then he has to have a urine culture to rule out an infection. He said infection would be the number one enemy of Cody’s kidneys. Sounds easy enough for me. LOL While getting in the van to come home, I noticed a large quantity of fluid on the ground, apparently originating from our van. I turned it on and quickly saw the temperature gauge sky rocket. So, I had to drive to a Burger King where I called Peter to help me make tow truck arrangements. I waited 3 and ½ hours for the tow truck to arrive. Yes, 3 ½ hours with a 23 month old in the BK parking lot (he quickly got bored with the inside of BK - no play area|). We made the most of it. It was a long, slow, noisy ride home in the diesle truck with Cody in the car seat and my legs squished to the side to avoid the gear shifter. But alas, we did arrive at 11:30pm. We have since discovered a large hose that had come disconnected from the radiator and so it was a very fix and other than the two ride, cost us nothing to have repaired. We REALLY need to pray for a new car! LOL
Well, that’s it for now. I’ll update next week after we see the neurologist for Cody and school starts.
Take Care and God Bless,
Renee
Friday, August 24, 2007 3:03 PM CDT
It’s that time again for another update.
Yesterday I took Cody and Marriela for a fun play date to our new friend, Bella’s, house. They went swimming and enjoyed playing with several kids their age. Marriela scared the crud out of several of us as she took off her floaties and decided to let go of the side of the pool. A quick thinking and acting Geralyn snatched her right up and out of the pool. Marriela was no worse for the wear, but it took a few moments for my heart to slow down.
The other day Marriela had her GI appointment out at Strong to discuss her ongoing belly pain. It is felt that her gall bladder/stones are the source of the problem. So we are going to do a special nuclear scan to determine where all of the stones are and if there is any blockage. If it’s either conclusive or gives us at least a sense that this is the issue, then we will either have the stones surgically removed OR remove the whole gall bladder. Pray that the test leads us down the right path in a clear and decisive manner. Other than that, we started her on the Adderall XR. It hasn’t had the nice wonderful success it had the first time we tried it and it’s messing big time with her night time sleeping. She’s up half the night and when she does go down, she’s restless and doesn’t sleep past 6:30 am. I have to call the doctor on Monday and let them know that this dose or drug isn’t working. While at the GI office we learned that she is now in the 30% for height and 20% for weight. These are huge increases (last time she was at GI she was below the 5% for both! LOL). I’m so happy that she’s making progress in this last area of concern.
Tray saw cardiologist today was was very, very pleased with his progress. Tray’s O2 sats were 98%, his HR was 102 (within the normal range - usually ran much higher and no one knew why), BP was perfect and his murmur was very soft. He is now in the 75% for height and 95% for weight AND he doesn’t have to go back for a WHOLE YEAR! This is the longest ever that he has been able to go between cardiology appointments. I am so pleased for him. Tray has a repeat Sleep Study to do on Tues (that should be a long day - first all day with Joshua getting IVIG and then home to take Tray to the sleep study, ugh). Hopefully, it will show that his heart rate during sleep is in a more normal range (was very, very low on previous sleep study) and his apnea has improved since his tonsillectomy.
Nettie is doing very well, but didn’t make it to camp. She spent two days instead at her nurses house with her daughters and all of their animals. She had a good time. Today she went down to the library for some new books and bought herself a hot dog at the park. She’s so grown up now. We should find out her lab work next week. Pray that her medicines had moved all of her numbers in the directions we needed them to go. We also found out her first work assignment - Joanne Fabric and Craft Store! I’m so excited for her. She will work 6 hours a week at the store and even has to wear the store dressing code (blue or black pants and a white collared shirt). Her nurse is excited as well, because she’ll have lots of things to look at while Nettie is “working”.
Joshua has continued to have had only the ONE seizure so far in the entire past 3 weeks. This is, by far, the longest he has ever, ever gone between seizures. He has been very, very tired the past couple of weeks and after waking up to eat a full (or two) breakfast, he falls back asleep for over 2 hours a morning. I am pretty sure though, that once Justin goes home and we get them all back on their normal bedtime schedule he’ll fall right back into his normal sleep pattern. Let’s pray he does, because his bus is coming an hour earlier this school year! He goes for IVIG on Tuesday and will spend the day with Nettie at Casey’s Place on Monday.
Cody goes to see urology on Wednesday of next week. I spent several hours yesterday calling everyone to get the scans he had done here in Syracuse put on CD for the docs out there to see, as well as copies of all the reports on his bladder issues. Hopefully, we’ll go and they’ll be able to assure us that there is nothing of major significance. Or, if there is an issue, they will have a good plan of action to resolve it once and for all. The following week, we go to Strong for neurology so they can evaluate him and be sure there is no subtle underlying neurological issues causing his bladder, bowel and speech issues. I am 100% positive there isn’t, but I’d like to hear it from the doctor himself. LOL Speech continues to move along, slowly but surely and he continues to try new words and every now and then, will actually start using a new word in his everyday talking. But has really has mastered the ability to say all he has to say with a total of 11 words. It’s actually quite funny now to ask him questions and he will answer every one of them using one of his 11 words and will almost always be RIGHT! LOL “What do you want to eat?” I ask, Cody says, “This” and points. “What do you want to play with?” me, Cody “This” or “Up” - as he points to something on a shelf. This and Up are very, very functional words once you pair them with pointing, pulling and throwing to make your point known!
We never did hear back from Boston on little Mariah. I don’t know what has happened or why, but we aren’t getting any responses via e-mail, our worker or the telephone. I called one last time today to ask for an update or to tell us that they have chosen another family. I just want the baby to have a good home. Yeah, it would have been nice if it was us, but as long as she’s well cared for, I’ll be happy. But, we need to have some type of closure.
Justin is leaving tomorrow, it’s going to be so much more quiet here. It’s amazing, unless you have lots of kids, how quiet just the absence of one child can make a house. When there are only 3 or 4 kids here, the house sounds silent. And that’s hard to do with Marriela around! LOL I think the boys will miss Justin as well, he has really been fun to have around and the boys have enjoyed his company tremendously.
Well, that’s it for now!
Take Care and God Bless,
Renee
Sunday, August 19, 2007 8:44 PM CDT
Hi everyone,
(Sorry, this is a long one, didn't mean for it to be, but. . . hey, here it is.)
Where is this summer going!? I can’t believe that we’re already into the 3rd week of August!
Our nephew, Justin, continues to spend the summer with us, having extended it another week. The boys are all really enjoying each other’s company. We’re trying to stay busy and make it an enjoyable stay, but struggling with one car issue after another. Right after dropping Tray off at his camp last Sunday, the Cadillac started acting really bad and now is not drivable. . . yes, this was suppose to be our “reliable” car! The red van had a battery change after we were told that’s all it needed, yet it continues to struggle with some starting issues (plus it eats gas up like I eat chocolate, NOT GOOD!) and of course, my dead in the ditch, white van. But we have made many local trips that don’t stress the red van too much and the kids seem very content.
Tray finished camp on Saturday down by NYC. He had a wonderful time and the camp director was so impressed by how much he had grown both physically and emotionally in the past year! He was voted the “Best Singer” for the session (they must of all had hearing impairments, because that is NOT one of Tray’s stronger skills) LOL. Don’t get me wrong, Tray CAN sing and does all the time. . . but let’s just say he isn’t going to make a living at it. He was thrilled to find out that Justin was going to spend another week because he thought he was leaving while he was at camp. Surprise!
Joshua continues to enjoy amazing seizure control! He has only had 1 (yes, you read it right folks, only ONE) since August 6th! That’s truly an amazing feat for Joshua and one we Thank God for everyday! In addition, we had his hearing aids adjusted and now he’s wearing them all day again. I have to call the CDU to make an appointment to have his FM system re-calibrated for his new aids. Which means I also have to call the school district to get his FM system. I better get to work on that one!
Cody is going in tomorrow for an iron level. He has this awful tendency to consume many non food items. Now I realize all children put things in their mouths that they shouldn’t, but Cody takes it to a whole new level. He will sit outside, squat next to the flower pots and enjoy himself fistful after fistful of potting soil. He also has a strong predilection for sidewalk chalk and sand. But his first and true love is DOG FOOD! He will eat poor Peachy’s entire dish if I don’t protect it for her! He runs past Peter and I hoping we don’t notice his bulging cheeks and tight little fists holding his next mouthful. Sooo, we’re going to do a quick iron check to be sure there isn’t something else to explain this love of strange items, other than I gave birth to a very weird child. Sigh. Which is, I suppose, entirely possible.
Marriela has been cracking us up lately with her unbelievable repertoire of popular music she knows ALL the words too! It’s amazing to listen to her start singing songs that I have barely ever heard let alone had enough time to master the lyrics, and yet there she is. . . bouncing her back off of the back seat of the van, singing her little heart out (with an occasional adorable misunderstanding of the lyrics). She is very excited about going to kindergarten and each morning asks me to take her to her kindergarten school. “When are we going to kindergarten school, you take me mom, I’ll go with Tray on the bus, I want to sit next to Tray, no, you take me mom in the car, the Cadillac, do I go today, tonight, etc. etc. etc.” That child can ask more questions in one minute that I can think of in an entire day. It’s disjointed thinking, it’s difficult to reason with thinking, at times, it’s down right strange thinking, yet she’s never not thinking or asking questions. We also got the green light to go ahead and start a new form of a medication she had been on before. Since she's a bit bigger and older, we're going to try the Adderall XR (extended release). She had a wonderful response to the Adderall before, but the down time (when the medication left her system) was beyond bearable. She was far more miserable and difficult than just tolerating the all day behaviors she was having. However, when the med WAS working, it worked wonderfully for a full 4 hours. She was able to sit, play, follow directions, handle transitions, etc.. But, like I said, 4 hours later, and I was looking for drugs to put me out of my misery!! We're praying this works for her. LOL
And Annette. Sadly, there was a major breakdown somewhere along the line and her transportation that had been all set for Camp TLC today, did not come through. We only found out yesterday afternoon, after I called to confirm her ride. We are going to try and work some magic tomorrow to see if we can get insurance approval for tomorrow and then pray that the ambulette company has a van and driver available to get her there. Due to our significant vehicle troubles, we are not able to make the trip all the way back down to NYC. On top of that, we had rented a small car to go get Tray because we didn’t trust ours to make the trip, so now we have a huge hold on the credit card until they release it sometime this week. So we couldn’t foot the bill for a private transport (over $600) via the ambulette. Since she has her power chair and we don’t have the means to transport it, we’d have to take her in the manual and the camp is not really designed for people to have to push wheelchairs around. It’s very bumpy and in some parts steep, so without her powerchair, she misses out on some of the camp activities that take place in areas that are inaccessible to the manual chair. So there is a strong chance she isn’t going to get to go. But, we are going to work like mad in the morning to see what we can accomplish by noon or so. That way she can be down there by dinner time if she does in fact get to go. Otherwise, she is doing great and even took the news with such grace and style that it made me cry. Of course she was baffled as to why I was crying when it was her that wasn’t going to camp, but alas, I just told her how proud I was of her and went off sniffling while she giggled at her silly mother.
Kids, gotta love ‘em.
Well, I was hoping to offer a picture Mariah,our possible new daughter, but we never got any information or pictures, as promised from the caseworker. I don’t know how to take the delay. My head says it’s nothing, and that maybe she was just out sick or something, but my heart is not so sure, and wonder if they are reconsidering us as the family. I know that God’s Will will be done, regardless of what I want. If we are to be her family, then we will be her family. If we’re not, then we won’t. When I know more, you’ll know more.
Well, this update has taken me 5 hours to complete, not too bad hehehehehe. And if we do get our number 6, I don't know how I'll ever have time to fit in an update. Or who will read them to the end for that matter! LOL
Take care and God Bless,
Renee
Tuesday, August 7, 2007 4:42 PM CDT
Hi everyone,
Well, first and foremost, I need to wish a very, very HAPPY BIRTHDAY to Marriela!! She is 5 years old today, amazing, truly amazing. She was such a tiny little thing when she arrived here in my arms (only 16 pounds at 16 months old). She was a fighter from the day she was born and has far, far exceeded any expectations the doctors had set for her. She is entering kindergarten and will be giving them a run for their money (literally and figuratively!). We are so proud of her and pray that she continues to make amazing gains as she moves into her fifth year of life. GO MARRIELA!
Let’s see what else has been going on. Joshua got his IVIG yesterday. It’s always such a long day! We leave at 10am, sign in at 12pm, get our IV started (using 4 people – always in the same chair in the same positions LOL), start the med and then sit. Sit, sit, sit for 4-5 hours depending on how much med there is. We brought Justin with us and he helped to pass the time quicker. We played 2 games of Life, one game of Chess, two games of Break the Ice, 7 games of air hockey, and the boys played countless games on the x-box and PS2. I am not, however, complaining at all about going, just saying, it’s a long day. Joshua continues to be doing great seizure wise and we’ve decided that he will get his port either right before or right after his next infusion. I was leaning towards before, but we have SO many appointments that last week I just don’t think we’ll be able to fit it all in. So he’ll have to miss a day or two of school (I’m sure he’ll be devastated LOL).
Ok, what else. Today we took the kids to the Museum, where we soon learned that it’s not open on
Monday or Tuesday, and I was sooooo looking forward to a day out of the house, yet in airconditioning! But, we sucked it up and went to the zoo, where we tired the kids out! Joshua and Nettie weren’t with us thought because they went to Casey’s Place. They both go on Tuesdays and Thursdays. Tomorrow Nettie meets with her NP to go over her last set of labs before restarting the meds. She’ll have labs drawn tomorrow as well to be sure that her numbers are going in the right direction. In the afternoon, Tray has his annual physical. I pray that this time, his physical is 100% uneventful. Last time he went for a physical (I didn’t take him last year, as his cardiologist filled out all of his camp applications) the pediatrician called me at 11:00 at night and woke me out of a sound sleep to tell me that Tray needed to go right to the ER for kidney failure. Now, mind you, he looked and felt fine and passed his physical with flying colors in person! After several more trips to the ER we finally found out that he was having severe Digoxin toxicity, was in atrial fibrillation and complete kidney failure. After a short (10 day) hospital visit, a quick trip to the OR for a cardioversion and a stay in the PICU, he recovered with no further complications and was actually on few meds than he had ever been in his life. He continues to do very well, I think the only thing we really need to address is his ADD and we’ll get his Adderall started soon, so we have time to make adjustments as needed before school starts.
Thursday, Peter and the older boys are going Whitewater rafting with Joshua’s Shenanigan’s group. That should be a fun and cool trip. Then on Friday, Joshua and Trayvon have a dentist visit and then off to ChuckECheese for a big outing before Tray leaves for his camp on Saturday.
The following week Nettie is off and we have several more appointments for the kids.
I also thought I would mention here… awhile ago Peter and I were looking at adopting a little boy named Sebastian. I went through the history and realized that I had never really explained what happened with that precious baby. Peter and I had in fact, been chosen as the family and we were very confident that we could help Sebastian. We were all set and then Joshua started have these new types of seizures and they were predicting a big brain surgery was going to be inevitable in the near future. Then, Cody’s urology studies came back and were highly indicative of tethered cord and he would need immediate surgery to his spine to release the nerves that were being damaged. With all of this going on, and after learning that there was another family who wanted Sebastian, we felt it was in his best interest to go to that family. It was a very painful and difficult decision, but right for him and our family. Now we know that Joshua will not need any neurosurgery and Cody does not have a tethered cord, therefore no surgery needed either. So we are actively in the process of adopting a little girl from Boston. She is 13 months old and is very, very much like Marriela was when she was a baby. She is a preemie also and has some cardiac issues that are being addressed at Hasbro Children’s Hospital. We are anticipating some additional information and a picture (which I will share LOL) sometime this week. Please pray that this goes smoothly and is the right decision for our family. I always felt 6 was my magic number and still do.
Well, that’s it for now.
Oh yeah, the white van is gone, shot, done… BUT the red van, after all those concerns and a long trip to Elmira to be checked out, is working just fine. No one knows what the issue was and we just pray it doesn’t happen again. We have sooo many things going on, it’s virtually impossible for us to be without a vehicle.
Well, now that it’s it.
Take Care and God Bless,
Renee
Friday, August 3, 2007 7:20 PM CDT
Hi everyone,
It’s been a very hot, long week. Joshua is home from camp and he had a blast! He had only one seizure the entire week and hasn’t had any at all today. I don’t know what has changed but my goodness, it is soooo wonderful not to be expecting the next one all the time and wondering when and where he is going to fall.
Justin, my sister’s son, is here for the next few weeks. The boys are in heaven with him here. He’s a great distraction to their “boredom” (oh yeah, they’re bored the minute there isn’t something planned for them every minute of the day LOL). He’s staying at least until the 19th and possibly until the 26th depending on how well everyone is still getting along. In that time frame, Tray and Nettie will both be attending their camps so there will be room in the house for the poor boy to sleep in a bed, right now he is on the couch or floor. LOL. Actually, the boys room is so hot that we had to move the three of them downstairs last night and tonight to sleep because the air conditioner is downstairs. Marriela is begging to join the gang on the little couch, so we’re trying it. Doubt it will last long, but hey, we can say we tried.
Nettie is doing well. I started her new braids today. She wanted “red” hair braided in, so I found the nicest shade of deep maroon to use. It looks very nice and mature. She likes it too. She has become so independent in her power chair. She goes down to the library all the time by herself, checks out, reserves and puts hold on all her stuff now. In addition, she has taken to going to the little grocery store around the corner from the library to pick up things she needs like batteries for her radio and little snacks to eat. Today she informed me that I have 4 kids now and 1 woman for my children. Apparently, someone along the line told her that when you go to high school, you become a young woman so that’s what she has now classified herself. To funny.
We also have some serious stress right now. Both of our cars are on the fritz. The white van, my van, my love, is gone. The transmission is blown and we just don’t have the means to repair it. The new van, the red van, the big gas guzzling hog is also showing signs and symptoms of transmission failure. Peter is driving it down to Elmira tomorrow to the man we bought it from to be repaired. Since we’re still paying on it, I don’t plan on him charging us anything since it should all still be under warranty. Peter is then bringing the old Cadillac back up to use as our temporary car, but it won’t fit 8 people, so for a while we can’t all go someplace together. Thankfully there is another car to use in the interm because Joshua has IVIG on Monday, Nettie has her ID appointment on Wednesday and Tray has his physical on Wednesday as well. In addition, the boys are suppose to go white water rafting with Peter on Thursday with Joshua’s Shenanigans group.
Now we just have to pray that we either manage to get another car with the Cadillac as a trade in or that the red van is ready to travel because Tray needs to be at camp on the 12th and we need to take him. Luckily, we already planned for Nettie to take the ambulette service to her camp so we only have to make the return trip home rather than going back down with Nettie and then going back again to pick her up. Right now, Peter is planning on spending the night at a hotel after he picks up Tray on the 18th and meeting Nettie’s ambulette at her camp on the 19th, so he can go over her meds, make sure she had a good trip down and such. Then he will come back home with Trayvon and we’ll wait for Nettie to come back on the following Sunday on the ambulette.
Please also pray that this heat comes to an end because it is very hard to walk to the park and such with Tray and Joshua since the heat affects them so much. So for right now, with no car and such high heat, I’m trapped in the house with 6 kids!
Other than that, nothing new is going on. Hope this finds everyone staying cool and having a great summer.
With love and God Bless,
Renee
PS. can anyone tell me how to make the ? stop appearing whenever I use an apostrophe? I don't make that many typos! LOL
Sunday, July 29, 2007 5:26 PM CDT
Hi everyone!
It's busy as usual here. Yesterday I drove Joshua out to Camp Hole in the Woods for his second camp of the summer. He was very excited and I left with a quick wave of the hand and then he ran down the hill with his one on one counselor. He's growing up so much.
I brought Nettie and Cody with me to Glens Falls and we stayed at the night at my mom's after dropping of Joshua. We had a nice time hanging out with my nephew Justin and my sister Stephanie. Justin is coming to stay with us for a couple of weeks when I go back out on Thursday to pick up Joshua. While signing Joshua in, Nettie got to see several counselors she had last year, including the love of her life (other than Micheal Jackson), Chris Huskey. She was just beaming. In addition, she made a startling announcement. . . she wants to go to Alumni week at Camp Hole in the Woods instead of Camp TLC this summer. I don't know if it will be possible to arrange for her to attend this late in the summer. The applications had to be completed and in by April. I'm calling the camp tomorrow to see if it's possible.
Nettie made another startling choice today. She has decided that she just isn't ready to say good-bye to her nurse yet. It was her full intention to try to go it alone next year at school (high school). Her nurse is responsible for her meds as well as supervising her ambulation and transitions as well as implementing her physical therapy program. But for Nettie, the nurse also helps her emotionally. Without that assistance, she is virtually unable to make decisions, or interact with her peers. She is just not confident to initiate peer to peer and adult interactions outside of her classroom. So we'll see how it goes. In addition, her nurse has to do her twice weekly IVIG infusions and her g-tube meds, but Nettie was hoping to swallow all of her meds and to work out a schedule so the nurse could do her infusions at home vs. school. However, today she informed me she is struggling with swallowing the pills and would like to go back to the g-tube meds and and she doesn't want to sleep with her IV meds going so she wants to keep doing it the way she is. These are very mature acknowledgments and decisions. I assured her that the nurse is going to stay if she needs her to stay.
Tray is doing well now. We are seeing positive gains each day in his reading and writing skills! He has also turned some of those behaviors around again that he had started with again. He is so very excited about Justin's arrival as well as going to Camp Hope with Heart. He's having a good summer
Marriela is doing great in summer school and on August 7th will be turning 5 years old!! I can't believe my baby girl is going to be 5. She is still so much a baby in so many ways yet. But she is so grown up in other ways. She loves her baby brother and defends virtually anything Cody does even if it causes her pain. I try to time-out Cody for hitting her or doing some other injustice to Marriela. . . instead of saying thank you mom, she steps over Cody and rubs his back and head and yells at me to stop being mean to her brother! As Peter says, she throws us to the wolves! LOL
Cody is doing very well. He now has over 30 words! His goal by the time he is 2 is 50 words. By 2 the average child has about 100 words, so he still has a way to go, but there is no doubt in my mind that he is well on his way to catching up at this point. He is also doing very well in PT and the therapist had some very nice things to say about him last week.
We attended the 3rd Annual Cancer Family picnic hosted by the Grosso's at their beautiful home. They really know how to throw a party! We meet some wonderful families and the kids had an absolute blast. Joshua and Tray spent most of the day in the pool and Marriela had a wonderful time running around with Bella and a gang of young girls. She was in heaven the entire time and was exhausted by the time we left. Thank you Amy and Frank!
Also wanted to let you know that this week Joshua has had fantastic seizure control! He only had 2 seizures the entire week and only 2 the week before! So, after consideration of our options, I think we'll be getting the port-a-cath after this next infusion on August 6th. We'll try to schedule to happen at the time his next infusion is due, that way we can just admit, have the port placed, leave him accessed and then go to the RMH for the night. The next day we'll go back to clinic and have them do the infusion and de-access. Then we'll just come home to fully recover and prepare him for his first post-surgical access in a few weeks.
I have taken on a new project. . . our church playground. You have seen many pictures of Marriela and Cody at the little playground that the Liverpool Community Church owns. LCC bought the property from the school district. The building they bought housed the Liverpool Early Ed program which is their special ed preschool program. As such, they had built a fully enclosed, fully accessible playground for children of all abilities. I LOVE this playground. But it is in disrepair and has some parts that need replacing. I am writing several grants to work on getting the playground fixed up to "new like" status. Prayers for this to happen and for me to learn the necessary steps to writing a good grant would be graciously accepted!
Well, that's it right now. Hope everyone is having a wonderful summer!
Take Care and God Bless,
Renee
Friday, July 20, 2007 10:48 PM CDT
Hi everyone,
Well, it’s been a week and we’re now officially on a short break from camps. Joshua came home today from Camp Good Days and had a blast. We had been so worried about his seizures we had to request a one on one, well wouldn’t you know it, he only had one seizure the entire week and that was today! The very last day, right before leaving he had his first one. Amazing! It also shows that the IVIG is WORKING! So we need to come up with concrete plan now on how we’re going to administer this for the long run. Other than having a great time, he was very, very tired. He’s going to sleep hard tonight and probably a few more days as well. Tray is thrilled he’s back. But in one week he leaves again for Camp Hole in the Woods for another week.
Nettie was so very disappointed that her blood work showed she needed to restart her meds. We started them back up on Thursday. She is doing awesome swallowing them all and doing well since restarting them. We will redraw labs again in 3 weeks to be sure they are having the positive impact we need them to have. This weekend she got to go to Casey’s Place again and that was a nice distraction from her newest disappointment. On a great note, she is doing wonderful at the gym on Mon., Wed. and Fridays. She is working so hard on the machines and does the bike for 15 – 20 minutes each day. She bugs me to now end until I get her to the gym on each of those days. LOL
Tray has started back with some of his behaviors he was expressing at the end of the school year. We are noticing some passive aggressive behaviors and he’s antagonizing his little sister and brother as well as Annette A LOT! Tomorrow I a going to sit down and try to find out if he’s nervous or anxious about anything, as this seems to be a marker for those feelings. If he can’t think (and ohhh, he’ll think hard) of anything that’s really bothering him, then well have to restart the behavior charts to see if we can’t get him back on track before school starts. I would hate for him to start third grade, something he is so looking forward to, on a bad note. Hopefully, we’ll get this nipped in the bud quickly here. Wish us luck!
Marriela continues to complain of tummy pain daily but it doesn’t seem to slow her down nor does it affect her appetite AT ALL! LOL She eats more than Joshua does by a long shot! We have been trying to wean her off of her afternoon nap, but she just can’t get through the afternoon without one! I have no idea how she is going to make it through a full day of school, hopefully they will still do “quiet time” and she’ll take advantage of it. She is absolutely loving summer school and her birthday is coming up on August 7th, and she is soooo excited that I’m coming to her classroom! I can’t go visit more often because it is actually very, very hard on her and her behavior deteriorates severely with me around more than a few moments (she just gets so excited and overwhelmed when her home and school worlds collide LOL). I have a call into her doctor about her sleep at night (or lack there of) and her belly pain. Hopefully we’ll have a plan of action soon.
Cody is doing great. He has more and more words all the time. He works hard for those words but he’s doing great with what he has. His PT is also very pleased with his progress so far. He runs much better and hardly holds his left arm up in the air anymore and has even been seen using it when running a little bit. His abdominal muscles are also developing nicely and he’s sooo willing to work hard for his therapist. He really is a dream patient, he just does whatever they want him to do, though most of the time he is not aware that he’s working because he is having so much.
Let’s see, what else. I’ll be picking up my nephew for his annual summer visit when I take Joshua out to camp. He’ll be staying for 3 weeks this summer instead of 2. We have a lot of plans for the kids while he’s here so that will be fun.
Tomorrow we’re going to go to the Grosso’s summer picnic for family’s of 5C. We’ve never been able to make one and we’re so pleased to be a part of it this time around. It should be a great time.
We didn’t make it to the Pediatric Brain Tumor Foundation’s motorcycle ride because Peter needed to be here with his dad who had just come home from the hospital from his surgery. The drive is just to long for me to do by myself. So we’ll have to re-plan for next year. I was very disappointed, but Peter’s dad is doing great and he really needed Peter’s help to be sure he was safe in the house and to help out his sister.
Well, I think that’s it for now, I’ll try to update my pictures soon, but my camera is not working right and I don’t know how well the pictures are going to come out.
I also have no internet service on my desktop (which is my computer). We had a bad storm with an unexpected power outage which has apparently fried my network card so I can log onto the internet. But Peter’s laptop works so I get to at least update.
Ok, going to bed now.
Take Care and God Bless,
Renee
Friday, July 13, 2007 8:04 PM CDT
Hi everyone!
Peter’s dad had his big surgery Monday and it went well. It was longer than anticipated, 6 hours instead of the 3 -4 they were told, and it was a bit rough for the surgeon I guess, but Dad did great. Peter and his sister and brothers have been down to the ICU to see him every day. He has always done exceptionally well despite how many things are wrong with him at any given moment! Hopefully this will be the last big hoop he has to jump through to have some clear sailing health.
Well, Tray is home from camp and Nettie is off. We went and picked Tray up Sunday afternoon. He was truly exhausted, and had bandages surrounding his knees and left foot. I thought they were from his fall the day he left from camp. Oh no. . . not the case, they were from the day he was leaving camp. Apparently he fell on his way to lunch and he tore up his toe and his knee-again. I can say however, after a nice soak in the tub Monday, his toe and knee looked a lot better and after one more nights rest, he looked a lot more chipper again.
Nettie left with no fanfare and a big smile. She was nervous, as this is a camp for siblings and she’s never really associated herself with that designation. But she really wanted a second week of camp and the only way I could get it for her, was by going to this camp. I haven’t gotten any calls yet to come get her, so I guess she’s doing alright. LOL She comes back on Friday afternoon. I did speak to a nurse at the camp about getting Joshua a one to one counselor and she told me Nettie has been treated like Royalty and she has had a fantastic time! I am soooo happy she agreed to go!
We finally got the results of Nettie’s bloodwork. I had stated last update that there was very little chance there was anything to worry about since most of her lab work was very stable. I was wrong. The doctor called and said her viral load is exploding far faster than they had ever expected. So she has an emergency appointment to see the eye doctor. If her eyes are the same or worse then we know it had nothing to do with her meds and we’ll go ahead and restart the same regime she had been doing so good on for the past 4 years. If there is improvement, then we know it was the meds and she will have to start a whole new cocktail and that’s going to be very difficult to create since she has been on virtually all of the classes and has had many side effects from many of the drugs. We are very disappointed. We aren’t telling Annette until we know which way we are going to go with her meds. She is going to be very disappointed as well, she had been so hoping to never need meds again. My poor baby.
Sunday we’re all off to the Pediatric Brain Tumor Ride in Old Forge. It’s our 10th year going! We love going and letting all the motorcycle riders see Joshua get older and older each year so that they know the fundraising they do is well worth the trouble. It’s amazing to sit in the audience and watch the big, burly men with bushy mustaches and lots of leather, crying when the children come up to the stage. One should NEVER judge a book by its cover. . . I know this first hand.
Joshua has been struggling with a lot more seizures. Wednesday he had 3 big ones. This is as many as he normally has in a week. He has had a total of 10 this week alone. The IVIG continues to hold the smaller seizures at bay and he has none of the absence or cheek puffing or arm jerking seizures. But the big ole’ nasty ones that knock him to the ground continue and in fact are increasing.
Today we went for IVIG. It was another traumatic and difficult stick for the IV for Joshua, but then nurses were great and got it on the first try. Tray was with us again and it provided a nice distraction for Joshua. I’m now trying to figure out how to get him his IVIG without needing a port or the need for constant IV’s. The solution would be Sub Q which is what Nettie does. The problem is, Joshua gets 50g each infusion and Nettie gets 15g total a month. Even if we ran Joshua’s infusion for 20 hours straight, it still wouldn’t be long enough to get the whole dose in. So we need to figure out another system so he can get it all without a long protracted infusion. I’m thinking hourly infusions daily. This will give him the entire dose over the course of 3 weeks in short and easy spurts daily. But I don’t know if this is being done anywhere else or if it’s even possible. So I have to do more research.
Joshua also saw the endocrinologist yesterday. He felt that we should continue his lupron shots for at least another 6 months and then re-evaluate at that time whether we’ll discontinue before the end of school or next summer. Summer is my preference in case his seizures worsen significantly when puberty starts. I won’t have to worry about him in school having more and more. He also recommended that we go back up on his Adderall as it was working nicely to keep his weight in check with his height. Joshua still takes 10mg daily, but he use to be on 20mg. We didn’t see much difference in the 10 to 20mg for his ADD, but for weight. . .oh yah, big change - 10 pounds in 6 months. This is not good for his osteopenia or his overall well being, especially since we are intentionally preventing him from growing taller by suppressing his puberty. Therefore, he will only get bigger and not taller since his calories can only work in one direction. So we’ll start that in August.
He’s also getting new hearing aids!! The old pair he had were wonderful and lasted for 6 years. They were the amazing donation from a loving mother in California who lost her precious daughter to the same tumor that Joshua had. She went through the same treatment and was the same age. But, sadly, not the same outcome. Her mother offered her hearing aids to us and we accepted with honor. THANK YOU MEGHAN! Those were the aids he has been wearing for the past 6 years and they have worked wonderfully for him. But, one stopped working during the school year, and it was well past the time to have them repaired, so we have ordered him new ones. He chose “clear” as the color of the aids (yes, I said clear, now we’ll see all of the inner workings of his hearing aids!). He then went on to chose a translucent blue ear mold for his left ear and a translucent green for his right ear. He should be looking good. . . Oh how I hope! LOL
Marriela continues to complain of stomach pain and I’m getting frustrated at not knowing if this is real or just her tactic to manipulate me into things. She is very good at that, but also rarely complains of any kind of pain, so I just don’t know. She is loving summer school and gets up and hops off to school every day without complaint. What a difference it is with her gone in the morning though! It’s sooo much more quiet. I don’t know what I’m going to do when she goes to school in the fall. Poor Cody and I are going to be staring at each other in the deafening silence that use to be all Marriela! LOL
Cody is doing great and has new words coming daily now. He surprised the speech therapist this week with the word “go” and “more” actually it’s more like “gawwww” and “mmmmmmawwwrrrr”, very long and drawn out, but very clear as to what they are. Tonight he even tried “Jawshwa” when I was yelling at Joshua to take his meds! Very, very cute.
Well, that’s it for now!
Take Care and God Bless,
Renee
Friday, July 6, 2007 4:16 PM CDT
Hi everyone,
Tray is at camp, Nettie and Joshua leave tonight for Casey’s Place for the weekend, and tomorrow we go to the annual family picnic in Ithaca with just the two little ones (still wont’ get to sit!).
Tray was sooo excited when we dropped him off for Camp Good Days and instantly made a friend with little boy who’s the twin of a little girl treated a little after Joshua. While waiting for them to load the bus however, Joshua was hanging around outside the door of the office (anyone who knows Joshua, knows he’s very, very shy around people he doesn’t know). While on a small “wall” about 1.5 feet off the ground he had a big seizure and landed hard on is back and elbow. He took a while to come out of it this time and fell asleep within 10 minutes of the seizure on the way home in the car. It was scary watching him fall from such a height onto such a hard surface. It’s such a hard position to be in as a parent. . . Do you emphasize his seizures and keep him from doing kid stuff (thus making him more self-conscious of his issues - hearing loss, academic struggles, seizures, etc). Or do we just do the best we can to protect him during a seizure and let him be himself (without getting too wild LOL) and take the chance he may really hurt himself but preserve his self-esteem?
Joshua is currently at the urologist’s getting the results of a very traumatic and painful VCUG and bladder ultra sound. She is suppose to decide if he needs to have the ureter re-implanted again if the reflux continued at grade III or worsened to grade IV or V. Peter stayed with him though since he was so upset during the test and one of us had to come home since the babysitter could only stay until 3:00.
RESULTS ARE IN! We get to wait another year and repeat the same tests, the reflux has remained stable! Thank you God! I don’t know HOW we were going to get him through the surgery when doing just he VCUG was as traumatic as it was! Apparently, he does still have a kidney stone and we are to call immediately I he has any blood in his urine at all, and they will put in a stent until it passes so it doesn’t damage his urethra (since it’s already had one surgery to it and may need another, so we need to preserve it). Other than continuing his Bactrim daily, we don’t do anything again for another year (and then we’re going to need A LOT of valium to get that kid back into that room again for the VCUG!).
Overall, it’s been a very, very, very chaotic but good couple of first weeks of summer. Next week gets a bit crazy though and I really have no idea how I’m going to do it all without an extra person to watch some of the kids some of the time. But we’ll do the best we can and hopefully we’ll make it to most things somewhat on time (Dentist, swim lessons, drop off for camp, summer school, IVIG, Shenanigan trips, physical, speech, pt and the list goes on! LOL).
It’s funny, sometimes there is sooooo much to report and yet this time, I can’t think of anything. Everyone’s been healthy (knock on some serious wood!). We haven’t a lot of doctors appointments yet (starting next week it gets really crazy though).
Oh yeah, one thing I did accomplish that I’m so proud of is getting Annette and Joshua medical transportation to go back and forth to Casey’s Place every Tuesday and Thursday. This is a HUGE burden off my shoulders on how I was going to get them there at 11:30 AND be home to take Marriela off the bus at 11:20. I also managed to get Nettie transportation for this weekend (actually she just left!) so she can now take her power wheelchair! I was also pleased as punch that they will also transport her to Camp TLC down by NYC so she can have her power chair there as well. Without her power chair, she is completely reliant upon others to push her for any real distance or up hills or in and out of buildings, etc. She hates that she has to rely on others for this and loves that she is completely independent with her power chair. In addition, she is taller in the power chair than she is in the manual chair so she is more at a height for talking with peers than when in the manual. However, we can’t transport the power chair ourselves because we don’t have a wheelchair lift in a van (the chair weighs about 250 pounds) so she is stuck using her manual whenever we have to take her somewhere. That’s why it was so nice to get her this transportation to camp and Casey’s so she has her independence when with her peers. Joshua will also be transported with Nettie when they go to Casey’s Place in the same vehicle. This was a concern for me, as I didn’t want Joshua traveling by himself as in case he has a seizure.
Well, until next week after my very crazy schedule, take care and God Bless,
Renee
Saturday, June 30, 2007 4:03 PM CDT
Summer is full swing!! What wonderful weather, we’ve had to enjoy it so far. There were a few hot days in there, but this past week has been beautiful.
Marriela has already finished her week of Camp Jr. Good Days. She was a reluctant participant for the first 2 days but was always in a fantastic mood (albeit very, very tired) when she got home. On day’s 3 and 4 however, she really had gotten the hang of it and had no problem getting on the bus and seeing what the day would bring. The wonderful directors of the camp invited Trayvon to join them on the last day to go to the beach with them and he was thrilled. Last year was his final year of Jr. camp and he had attended for 5 years so they really missed him. Marriela loved having her brother along with her and I think it’s one of the reasons she became so much more comfortable by the end of the last day.
Marriela has also had her ultra sound of her gall bladder done. You could clearly see one small gall stone, but the question is, how many were there before and if more than one, where did the rest go? So we wait for the radiologist to compare her previous scans and let us know what they think. But, I’m now thinking that this is not the source of her belly pain and that’s it probably more psychosomatic rather than medical in nature. She starts summer school on Monday for 2 ½ hours daily and is looking forward to riding on a “real” yellow school bus for the first time ever!
Tray leaves for his overnight camp at Good Days and Special Times. He’s excited and nervous. So am I! This is a camp for siblings of kids who had cancer more than 5 years ago. Being that it’s designed for the “healthy” siblings, I’m worried about his overall care. I’ve been assured though that the medical staff is the same throughout every camp irregardless of the camper type attending. So he’s off this week! Next week, he’ll be starting two weeks of daily swim lessons at the Salina Town Pool. So he’s got a lot to look forward too in the next couple of weeks.
Joshua and I did the Corporate Challenge volunteer day with the Summer Shenanigan’s program. It was a VERY HOT day and the sun was beating down, but Joshua did fantastic and filled and filled and filled the water cups. Once the race started 6100 runners came past and the kids handed out cup after cup of water to the racers. He never slowed down and was even cleaning longer than all of the other kids!! (you see, after you fill all of the cups and then pass them out, there are about 6000 + cups littering the roadway and you have to clean them with a rake and by hand). It was a great experience for him and I’m glad he did it.
Yesterday Joshua went to the Baseball Hall of Fame with Shenanigan’s for the whole day. He had a great time! He came home all smiles, though a bit remiss on the details of his trip, we were assured by the director he had a great time. LOL
Next week he’s going to Casey’s Place on Tuesday for the day and then spending the entire weekend there with Nettie on Friday through Sunday. On Friday he also has a full urological workup again including another VCUG, bladder US and a visit to see the urologist. These tests will tell us if he needs to have the kidney surgery again to repair the reflux and prevent further damage to his right kidney. Please pray it has improved or at least stayed stable so we can continue with the “wait and see” or better yet. . . Not have to plan for surgery at all.
He also did his IVIG last week and did fantastic!! Trayvon joined us for the day and I think both boys were happy to be there (well, as happy as one can be in a hospital room for 6 hours LOL). Since he continues to remain very stable with only one seizure or less a day, we are staying the course and will plan to have his port placed at the end of August just before his last infusion of the summer. This way he won’t miss school AND gets to enjoy the entire summer port free.
Nettie had her visit with the immunology clinic to go over her latest labs. The lab had originally run the wrong test, so we had to go back and have it done again. Unfortunately, the viral load we needed wasn’t back yet because it was being repeated. However, her t-cell count, though down some more, was only slightly lower and her precentage went from 30% to only 27% so that was a minimal drop. Everyone is still ok to hold on tight and repeat the labs every 4 weeks to follow the trend. Once we know the trend we can begin to either space out the labs a bit more, or start treatment. Only time will tell. We’re also still interested in what her viral load is, but since her other numbers held pretty stable, we’re assuming it isn’t that bad.
Annette has also discovered the joys of books on tape from the library! All of the kids (yes, even Cody) are signed up for the summer reading club at our library which is only 3 blocks from our house. Nettie and Joshua are rated by the number of pages they read, and the younger ones are by the number of books they read. Nettie went down by herself today to request a new library card (she can’t find her old one) and to turn in and check out some books. I was so proud of her desire to do this all independently! She did great and came home with a new card and TWO new teen books on tape. My little girl is so grown up.
Cody is doing well. He had a case of croup that lasted for weeks and even caused me to take him to the ER to be sure he hadn’t swallowed something causing the strange cough and breathing. But alas, it was just the croup. LOL In addition, he and Marriela also developed Fifth’s Disease and the wonderful viral sore throat that goes with it. They were even so kind to share it with me. I have had it before and it resulted in the worst imaginable arthritis I could imagine. . . Well I’m walking like I’m 90 again! I hate that Parvo B19 virus! LOL The kids on the other hand are completely fine and fully recovered in only 24 hours. Nice.
We got the word that Urology wants to see us out at Strong to assess Cody’s Neurogenic bladder on August 29th, and then we turn around and go back out on September 5th for his Neurology visit. That’s also the week that Joshua gets his IVIG and now we’re going to do his port placement the same week as well. That’s NOT going to be a good week, I feel it now! LOL
So, that’s a bit of our summer so far. Tray and Marriela have already completed their first round of books and got their first prize for reading 6 books each (Tray reads them and I read to Marriela and Cody). Cody actually would have also gotten his first prize, but I didn’t know about the 1-3 age group until we went down to turn in this weeks slips. So he’ll start his next week.
Peter’s Dad is going to be having major surgery on July 9th to repair his abdominal aortic anyresum. He’ll be in the hospital for at least a week or more and then he’s staying at my sister-in-laws just a few moments from us, for about 2 weeks while he recovers and goes to his follow-up appointments. It’s going to be a stressful time for us all as we juggle the summer schedule, Peter works full time and care for his father. Say a prayer that all goes well!
I also forgot to mention that I am an Aunt again!! My brother, Jason and his beautiful wife, Millie, had a healthy baby girl named Ashley Marie. We can’t wait for more pictures of her!
Ok, that’s it for now.
Take Care and God Bless,
Renee
Tuesday, June 19, 2007 9:48 AM CDT
Hi everyone!
Well, we’re all recovered from the tonsils (especially Tray since he was the one that had to part with them LOL). We’re into the final week of school. I have a child moving out of Middle School and into High School, a child moving out of Elementary School and into Middle School, a child moving out of Pre-K and into Elementary school and one going from 2nd to 3rd grade (a much earned promotion I might add) and one still at home. Where did the time go. I know that without the passage of time, I wouldn’t have the children I have now. If time stood still for Joshua, there would be Tray, Marriela or Cody. If time stood still for Cody then there would be no . . . well, we’ll just have to wait and see what the future holds for us now don’t we.
Today Marriela had her Kindergarten physical and all of the resulting crud that is part of it. In addition to her three immunizations, she had to have labs drawn because she still has belly pain and the doctor and I want to confirm that it’s not her gall stones giving her difficulties. She will also go for an ultrasound sometime in the near future to take a look at that lovely gall bladder of hers. Dr. Jones also suggested we work on getting her to learn to swallow pills because then we can try a couple more options with the ADHD meds, especially the longer acting ones. So we have a goal this summer to learn how to swallow pills.
Joshua goes this Monday for his next IVIG infusion. Peter and I have talked about waiting a few more infusions before going to the port. We seem to be developing a system for getting the IV started and I hate to add one more piece of hardware to his chest as summer comes along. He’s going to be very active outside with swimming and climbing and playing and I hate to have a repeat of last port so we’d like to get through the summer to see if this is something we’ll continue with during the fall and winter, THEN we’d go to the port.
I feel like a terrible mother because I forgot Joshua’s Lupron injection this month. I thought it was due next week and when I called the pharmacy to reorder it the pharmacist thought they discontinued it because I never called it in 2 weeks ago. He got it today but it’s two weeks late and I don’t know if I should now plan for 4 weeks from today or go back and do it in two weeks again so we’re back on schedule. I don’t even know if the insurance would allow that since we were suppose to only give it every 4 weeks. It’s a $1500 shot so I won’t be paying for it if they don’t. LOL
Tray is thrilled that he’s almost a 3rd grader!!! I am so happy for him as well. We don’t know what teacher he’s getting yet but we hope he’s going to be in the “looping” class. That means he’ll have the same teacher and kids for both 3rd and 4th grade. The teacher that loops at this level is awesome and I think Tray would really, really love her class. We’ll see.
Nettie went to the dentist today and once again (17 years old now) is CAVITY FREE!! It’s truly amazing that she has such great teeth!! She has never had a cavity in her life. She’s also very excited about becoming a High Schooler next year!! When did my baby grow up!? I got an e-mail from Nettie’s NP who found that the wrong test was ordered for Nettie when we did her labs last week. In addition, her glucose was quite high so they want her to do a fasting glucose when she has her labs repeated. She’s NOT going to be happy! But without the correct labs, we won’t know what her viral load and t-cells are doing. So I’m going to take her first thing Friday morning.
And Cody. . . He had his MRI of his cervical spine yesterday as well as a follow-up with the ENT for his tubes and a PT visit. He had a very busy day, but handeled it all in stride. He work up a very happy camper from his anesthesia and we were home in just 3 hours from start to finish (an all time record for any sedated procedure!). We go next week for the results with the neurosurgeon (this MRI was done only because he had his whole spine done except his cervical spine (they forgot to order it last time)). The neurosurgeon just wanted to be sure that we didn’t miss anything that can be fixed surgically and that there are no congenital abnormalities along the entire spine. I am 100% confident that all will perfect, but now we have the proof. We’re waiting for something from the urologists from Strong Memorial to review all of his testing he had done here to see if we need to follow up more with them regarding his neurogenicbladder.
Next week we go to Strong Memorial with Joshua, Marriela goes to Camp Jr. Good Days daily, Cody has his 18 month check-up (and yes, he is almost 22 months, but we were a bit busy around his 18th month of life and . . . Yadda yadda yadda LOL) and Nettie meets with Immunology to review her labs for the past month. It’s a busy week but that’s life.
Well, that’s all for now.
Take Care and God Bless,
Renee
Thursday, June 14, 2007 8:30 PM CDT
Hi everyone,
We're all home and well. Tray continues to make a nice recovery. Today we were able to move down on the pain meds (good thing too, they're messing up his tummy a lot!). He's eating well once his pain med is on board and I even got a big dose of miralax into him by mixing it in his slushy today. Hopefully things will kick in and that will start feeling better as well.
Tomorrow we're going over to the school to cheer on Tray's class and Joshua for Field Days. Joshua's class has to wear "hot pink" t-shirts as their team color! I had to go to the Thrift Store to find a "hot pink" boys t-shirt, and guess what?! I did! Well I guess it's a unisex shirt but none-the-less it's hot pink and its a plain old t-shirt so it doesn't look "feminine". Nettie had a couple but they looked like girls shirts.
Nettie had her labs done today for our next appointment. Pray that these are stable or improved so we don't have to jump right back onto the meds, she's enjoying being med free for the time being.
Cody recovered without complications from is virus. His fever broke Saturday and he was back to his oldself by Sunday. Today he had his last OT session and has officially been dismissed from OT services. YEAH! He's also finally starting to really try to say words. It's funny to hear him stand and mimic everything he hears like, "bye bye", "bath", "bubble", "Joshua", "Nettie", etc. He'll be babbling up a storm in no time now. The speech therapist today was thrilled with what she heard. Tomorrow he has his second PT session at the playground. We like going there for therapy because he is so much more active with the therapist and she gets to see what we see when he runs and falls and stuff.
Joshua had a 4 day run of no seizures and now their back, but like I said, he's only having one a day vs. several and the frequency is NOT increasing despite no changes in his meds. We feel this is definately due to the IVIG, there is no other explanation. I spoke with the Asst. Dir. of Special Ed. regarding the change in sign language interpreters next year for Joshua. I had been forwarned that the new one considers her role as "just" and interpreter and doesn't do "teacher aide" functions. Well, Joshua needs both an interpreter as well as a teacher's aide AND the interpreter is responsible for protecting and monitoring Joshua during his seizures and swiping his magnent when he has one. I have heard several times that the new person isn't to keen on this and wanted to be sure that there was adequate time to make changes before the new school year was upon us. The Direct. was very kind and concerned as well and will talk with both the old and new interpreters to find out exactly what roles need to be clarified and offer the new one the opportunity to opt out if she doesn't want to work with Joshua, knowing his many needs. We'll see.
Marriela is thrilled to start kindergarten and has already started her obsession with her NEW backpack (which we haven't bought yet). I don't know if I've ever mentioned the fact that Marriela looks for her backpack upon awakening and loses it about 12 times a day and goes bonkers each time she does. So we spend usless hours a day looking for this thing she really only needs to go to school with and come home with. LOL She wants a Barney backpack for kindergarten but I'm thinking he's a bit outdated and that's going to be a hard request to fill. This years was a nice neutral pink, white and black (anyone who knows me, knows I don't like characters on my kids clothing, shoes or items.) LOL
Signed Tray up for his swim lessons this summer and started filling out the 4 Camp Good Days applications I need to send in ASAP! Also managed to arrange transportation for Nettie and Joshua to their summer respite program for the summer! That's going to be sooooooo nice not to have to worry about driving to and from Casey's Place every Tues and Thursday.
Peter is officially up and running with his new job! Yeah. He is going to start selling his new product in the next week or two and I think he's going to do great with this. . . it's a great product and I'm going to be selling a similar item to camps and such once I get the kids in school. More to come later. LOL
Well, that's it for now.
Take Care and God Bless,
Renee
Wednesday, June 13, 2007 7:01 AM CDT
Hi everyone,
Just wanted to do a quick update to let you know that Tray had his surgery yesterday and is doing great. In fact he's doing so well, we're already being discharged!! He did spend the night in the step-down ICU due to his heart conditions, but he didn't really need any additional support other than his pain meds. He did very, very well.
The hardest part was going to sleep for the surgery. For some reason, he reacts very strongly and negatively to the gas mask (laughing gas) and became extremely agitated and distraught. So we opted to proceed straight to placing an IV to administer the anesthesia directly. He did great for the first stick, but it wasn't a good spot and so we had to do another poke. He cried but was wonderful and let me hold him the whole time. As they gave him the sleeping meds though he fought it tooth and nail and kept crying out for "God to help me!". It was so heart wrenching and two of the nurses had to leave in tears. He was just so brave and the medicine makes him feel so out of control he didn't know who else to ask for help. It broke my heart.
But, in the end he's doing great and is tonsil free. His adnenoids were so small they didnt' even bother with them. Now we should see some nice improvements in sleep and attention.
Peter is holding down the fort at home very well. We're going to suprise him with our early discharge. LOL
We'll Tray thinks I'm changing my clothes so I better get back in there before they touch him (very anxious still).
Till next time,
Renee
Wednesday, June 13, 2007 7:01 AM CDT
Hi everyone,
Just wanted to do a quick update to let you know that Tray had his surgery yesterday and is doing great. In fact he's doing so well, we're already being discharged!! He did spend the night in the step-down ICU due to his heart conditions, but he didn't really need any additional support other than his pain meds. He did very, very well.
The hardest part was going to sleep for the surgery. For some reason, he reacts very strongly and negatively to the gas mask (laughing gas) and became extremely agitated and distraught. So we opted to proceed straight to placing an IV to administer the anesthesia directly. He did great for the first stick, but it wasn't a good spot and so we had to do another poke. He cried but was wonderful and let me hold him the whole time. As they gave him the sleeping meds though he fought it tooth and nail and kept crying out for "God to help me!". It was so heart wrenching and two of the nurses had to leave in tears. He was just so brave and the medicine makes him feel so out of control he didn't know who else to ask for help. It broke my heart.
But, in the end he's doing great and is tonsil free. His adnenoids were so small they didnt' even bother with them. Now we should see some nice improvements in sleep and attention.
Peter is holding down the fort at home very well. We're going to suprise him with our early discharge. LOL
We'll Tray thinks I'm changing my clothes so I better get back in there before they touch him (very anxious still).
Till next time,
Renee
Friday, June 8, 2007 10:31 AM CDT
Hi everyone,
Well, it’s busy as usual. This summer is going to be sooo busy it’s actually a little daunting at this time. But we’ll do it and the kids are all going to have fun.
Cody is on his 4th day of high fevers. Saw the doctor and other than fever and a nasty looking throat she saw nothing else. The strep tests were negative so we’re hoping to just ride out a basic virus here, but he is MISERABLE!! I’m not used to my baby being so irritable. You can’t look at him or touch him without a full fledge tantrum occurring right now. Tylenol and Motrin around the clock keep the fever just under control. I’m giving him until Monday and then I’ll be demanding x-rays and bloodwork.
Joshua has been having one seizure a day, and it’s always during Social Studies. Maybe once school’s out and SS is over, the seizures will stop LOL. The upside of this is that he is ONLY having one seizure a day. We haven’t touched his meds in over 2 months since being on the IVIG. As most of you know, once Joshua starts having breakthrough seizures, he escalates quickly and we have no choice but to make medication adjustment/changes. But, that’s not the case here. He is sticking with just the one seizure and it’s even at a predictable time so we can plan activities accordingly, what a nice change. I’m so happy we’ve tried this approach and avoided surgery. He goes in a few weeks for his next VCUG and bladder US to determine if he needs to have his kidney reflux repaired. It’s sad to say, but I don’t even think we could fit a surgery in this summer so he’ll have to wait until school starts. . . I’m sure he’ll be devastated to learn that. LOL Joshua is also going to go to a new camp this summer. He has agreed to go to Camp Good Days and Special Times. This is his first “cancer” camp and he’s nervous. He refused to go back to the epilepsy camp. He finally confessed that they have some steep stairs that he fell on once and he doesn’t’ want to go on the steps again (I think it was the whole camp atmosphere, but hey, he was honest and actually, it’s soooooooooooooo far away I was nervous with him there). So he will also be going to two camps.
Nettie is off to Casey’s Place this weekend. They had an opening and she loves to help them out by filling in the space J. She looks and feels good. This summer we have it all worked out that she is going to go to the gym M, W and F with her nurse and I for a good workout. T and Th she and Joshua spend the day at Casey’s Place. Nettie is also going to go to TWO camps this summer. She had aged out of her other ones so we thought she only had the one teen camp. But after some investigation (actually, I was looking at dates for Joshua to go to Camp Good Days and Special Times) I discovered that GDST has a week for siblings ages 8 - 17. So both Nettie and Tray are going to the sibling camp. Actually, Nettie is going to go to one meant for kids who’s cancer sibling is only out of treatment for 3 or less years, but she’s not here for most of the week meant for kids whose sibling is out of treatment more than 3 years, so they’re letting her go to the other one. Tray is going to go to the one he’s suppose to. What’s even better, is that Nettie, Joshua will be at Casey’s Place for the weekend of July 7 and Tray will be away at his camp so we’ll only have the little ones home. . . Anyone interested in babysitting!! LOL Anyhow, Nettie is all happy now that she has two camps to go to.
Tray had his pre-surgical appointment yesterday and today is pre-testing with anesthesia. Tuesday is his surgery and she predicts he’ll need 2 days in the hospital. I don’t know why she thinks that, since Marriela spent only one night, Joshua did it as an outpatient and my niece didn’t even stay the full 4 hours post-op. Joshua and Marriela were very sick at the time of their surgeries and recovered without difficulty. I think she just hasn’t had a lot of kids with cardiac or other issues and is preparing for a complicated case. I, on the other hand, know just how complicated things can and can not get and this is not one of those times I’m worried! LOL We’ll be home in no time. And as mentioned before, Tray is going to a new camp this summer along with his Heart Camp. So he has two camps as well!
Marriela is also going to go to camp this summer! She gets to go to Jr. Good Days until she’s 8 and then she gets to go to the sibling overnight camp as well!! Isn’t that awesome. I’m sad it’s because Joshua had cancer, but there are some good things that have come out of it for all of them. Got to look at the bright side! She’s also going to summer school every morning for 6 weeks (½ day) so she’ll be very busy as well. Marriela also had her kindergarten screening yesterday. She was highly reluctant in the beginning, but after awhile she loosened up and started answering their questions. I think they were a little surprised by her results (not a good surprised) but I wasn’t . I know they have their work cut out for them in kindergarten next year, but that’s why she’s in special education! She’ll do great, I know it.
So this summer we have 7 camps (3 of the camps have transportation from Syracuse to Camp Good Days), Marriela will have to be driven each day to Syracuse. Joshua has 5 IVIG treatments this summer. Tray has to be driven to NYC for his camp and then the day after we go to pick him up, Nettie has to be dropped off at her camp down by NYC and then turn around 6 days later and go back to pick her up. Joshua has to taken out to Lake George for his camp and then picked back up, but I’ll stay at my mom’s for a few days for that one. We have many appointments this summer and Joshua and Nettie will be going to Casey’s Place every Tues. and Thurs.. It’s a busy busy time. LOL
Well, time to proof read one of Peter’s final papers!
Take Care and God Bless,
Renee
Saturday, June 2, 2007 9:42 PM CDT
Hi everyone,
Well, we're home from Rochester. I really don't like these all nighters! LOL Actually, I did much better than Joshua! At 6am he snuck down to the room and I "found" him curled up in bed snoozing! He didn't even hear me pounding on the door (he had the keys, smart boy) and finally heard the high pitched tapping of the door knocker on the door. I had to beg plead and borrow to get him back out of the bed. Then, just when he was up and in a decent mood, he fell to the side and hit his head, that set us back about a half hour getting out of the room. Then, I promised him a trip to BK to get some french toast sticks, he took the bait and off we were at 6:30 in the morning to feed him. Except, now he's all giddy from lack of sleep and starts running towards the van and trips and lands face first on the driveway, skining both his knees, his chin and his upper lip. Not a good start to the morning.
He actually recovered faster than I had thought he would being as tired as he was, but we got our food, me my Dunkin' Donuts coffee and we decided to just head to the hospital and hope they opened sooner than later. We arrived at 7:15 and sat in a quiet corner and ate our breakfast. A doctor saw us and told us they didn't open the doors until 8:00am, so we went over to the 4th floor inpatient floor to check out the walls and fish tank. We struck gold because the child life team had already opened the doors to the outdoors play area and Joshua and I played several "rousing" games of H O R S E and H O U S E (Joshua's version of Horse). By the time he was done and had to pee, it was after 8 so off to clinic we went. They took us right in. He did protest LOUDLY about the IV, but when push came to shove (and 4 of us held him firmly) he got it in on the first try and we started his infusion by 9:00am. The EEG people showed up at 9:30 and he complied beautiful when they said "time to go to sleep." LOL
Unfortunately, the EEG didn't show any change. I was dissapointed, but not detered. Dr. Henry felt that we WERE seeing improvements in his seizure patterns and that was the determining factor not the EEG. So we go back in 3 weeks for his next infusion and then we have to decide if we go for a Port or not.
We also met with Nettie's clinic and got the long awaited results of her labs. It was mixed. First, her viral load - which has been 0 for almost 10 years now, is now at 10,000. But, they say this level is extremely low still and that they go by log increases (100,000) rather than just the numbers. However, her previous CD4/CD8 ratio was 42% and now it's only 30%. Her actual number of T-Cells hadn't gone down that much, but the ratio is what they use to determine if she is in trouble. The ratio reflects her ability to fight infections and a ratio of 20% is the lowest you can go before you begin to run the risk of developing opportunistic infections. She clearly has room to move, but what concerned everyone, was the fact that she dropped 12% in just one months time. So we go back in 2 weeks for the next set of labs and will go over them at the end of June to determine if we can stay the course or if we have to start a new regime of meds. But she looks and feels great so that's all I'm focusing on right now.
Everyone else is doing well. Cody appears to be suffering from allergies as his eyes are very swollen underneath, but he's acting fine. So we're going to wait it out a bit longer til the high pollen season ends to see how he does.
Well, that's it for now!
Take Care and God Bless,
Renee
Wednesday, May 30, 2007 7:48 PM CDT
Hi everyone!
Sorry for the overdue update, but I was busy putting up the new pictures. LOL
Tomorrow Joshua and I head off to Rochester to stay awake ALL night in preperation of his EEG and then his IVIG infusion. He has had an increase in seizures, but his awareness and lack of a "significant" increase still leads us to believe that this treatment is working well. I am anxious to see what this EEG looks like!
Tray's surgery is in only a couple of weeks, I'm thinking I should let him know at sometime, but the worries SO much that I'm hesitant to do so just yet.
Tomorrow is also the big day that we go over all of Nettie's lab work at the clinic. We're all nervous but hoping that all is looking Good! She looks and feels great, here's hoping the inside concurs with the outside.
Marriela got good news today, she is definately going to be going to the same school as Trayvon!! Yeah! I am so relieved. Now we just have to pray they'll let Cody go to LBE as well when it's his turn! LOL But, in the mean time, say a prayer for those teachers next year, they'll need all they can get with Marriela! God Bless her little hyper soul!
And finally Cody. He's doing well and has found that defying anything and everything we say is highly amusing to himself. So to keep himself enterained, he runs the opposite direction, does the exact opposite of what you say and breaks every rule he can. And he's not even 2 yet. Oh joy.
We had a great time at the picinic and Memorial day parade last weekend. Cody LOVED catching the candy the parade members throw out to the kids along the path, but now he thinks that the road magically produces candy and is running for the road as fast as lightening to see what he can find. UGH
Well, that's it for now!
Take Care and God Bless,
Renee
Friday, May 25, 2007 9:38 AM CDT
Hi everyone,
I know it's been a bit since my last update! All is going well here. The kids are actually all doing well health wise and are home today for the extended Memorial weekend. It's way to hot for me though and we're all sitting here in our UN- airconditioned house staring and sweating LOL.
Joshua continues to do well though he had another drop seizure last night. But, he was also on an all day field trip which was outdoors and in the hot sun and he had NO seizures the entire time he was there. Normally heat is a huge trigger for him. So I wasn't suprised he had a seizure, just sad that they are the ones we so desperately don't want him to have. But all in all the treatment has thus far, been a huge success.
Tray is set to have his tonsils and adenoids out on June 12. I almost forgot I had to stop his aspirin therapy until I read his appointment card! Good thing I saw that. LOL School wise, he is still struggling, but trying and that's all we ask (well, not all we ask, but you know what I mean).
Marriela and Cody are addicted to the outdoors. Peter and I realize now that Cody is going to be a "dirty" child. All of my other children are not really fond of being dirty. They will all ask for wipies or come in and ask for a towel if they get too dirty, but not Cody! Yesterday, Peter and I were sitting outside watching the kids, apparently not well enough. Cody turns around (he was only about 2 feet from me) and has a mouth full of dirt! He is just chewing away. His diaper was full to the brim, his clothes were stained from top to bottom (and that was his third outfit of the day!)his nose was oozing green goo and his mouth was coated in filth. He was a disgustingly dirty child. He looks like that all the time. Even inside he manages to find anything dirty. . . the dog's water and food bowels, the rabbit's woodchips, markers, make-up, etc. etc... anything that causes a mess! Nasty LOL.
Nettie is also doing well and far from a dirty child! She really likes to be clean (typical teenager) and spends a whole LOT of time in my bathroom (of which there is only 1.5 in the house) primping and priming herself.
Tomorrow we leave for Elmira where Peter will attend his friends wedding and I will join him later in the evening for the reception. Then on Sunday we all go for the annual Memorial Day Picinic. Then we'll head home and on Monday and get to see the Village parade for the first time in over 5 years! (usually the picinic is on Memorial day so we miss the parade).
Well, that's it for now!
Take Care and God Bless,
Renee
Wednesday, May 16, 2007 10:58 AM CDT
Hi everyone,
I ask that everyone please go to this page and offer your support and prayers for this family. To say that Alicia, John, Ciara and Hunter (and angle Tommy) have been to Hell and back is an understatement. Ciara is having a very difficult time and given her disease and the prognosis, I know they must be very, very scared right now.
http://caringbridge.org/ca/bennettboys/
As for my gang,
Joshua continues to do very well. He did have a "big" seizure on Mother's Day. He was playing Elvis songs on the computer and asked me to listen, when I asked him what he was going to play there was no response, then I heard some strange noises and when I came to see him he was on the floor in the front hallway having a seizure. It wasn't awfully long and he came right out of it so that was good. But since that one, he has had only one other very small one at school. That's only 2 seizures in almost a full week!! That is awesome since we haven't made any medication changes at all! I am soo happy it seems to be working.
Everyone else is doing good right now and we're just trying to get into a routine that has me NOT counting on Peter for back-up when I go to all of these doctor appointments and such, since he is getting back into full time work here in just a few weeks. It's hard for me to not rely on him as my "support" person so I don't have to take the two little ones to every appointment, store, meeting, etc that I have. Someday, I hope to be able to hire a person that can care for and knows my children (and all of their special and crazy needs LOL) that can be here to be my new "support" person. But, right now, that's just a dream. LOL
Well, that's it for now. Please visit my friends above, they could really use your support.
Thanks and God Bless,
Renee
Saturday, May 12, 2007 12:38 AM CDT
HAPPY MOTHERS DAY MOMS!!!
Well, we're home from Rochester (got here at about 5:30 last night) and all still seems very good! Joshua hasn't had a seizure yet in over 3 days AND he even forgot to take his meds 3 nights ago and still - NO SEIZURES. That is truly amazing. He's much more talkative and even picked up the phone and made a phone call yesterday. He hasn't "volutarily" spoken on the phone in years. He picked up the cell phone and called his dad 2 separate times! So, we hold high hopes that this just may work for a while. His IV from Thursday did in fact last until Friday and he was able to get his meds yesterday without another stick. I promised him only 2 more IVs and then we'll get a port-a-cath if this is something we're going to continue with indefinately. We go back on June 1st for a "sleep deprived" EEG and his next infusion. Then again on the 22nd of June for the same things and from those EEG's we'll decide whether or not we'll continue this treatment. Thus far, I have great confidence that we will be able to.
The rest of the gang is doing well. Cody's cervical MRI is scheduled for June 18th. Tray's tonsil and adnoid removal is scheduled for June 12th and will require a minimum of one overnight stay. I don't anticipate any complications though so I'm sure we'll be out of there in good time.
Nettie is at Casey's Place until tonight where I'm sure she's enjoying herself.
Peter went to Elmira today for a bachelor party for a good friend. He'll be back later tomorrow.
Well, that's it for now!
Take Care and God Bless,
Renee
Thursday, May 10, 2007 1:10 PM CDT
Hi everyone,
We're up and running today, but not without more excitement.
We went home yesterday under the impression that they were admitting Joshua for a PICC line to be placed under general anesthesia. We were wrong. The ICU doc who places the lines felt strongly that since he had signs of an infection at the IV site that had blown, it wasn't safe to put in a line that wouldn't be used again for 3 weeks. So when we arrived here today we were suprised to find that the plans had changed again without us knowing it.
In the end we had to hold him down again to place another IV. He did well though lots of screaming and crying, but stayed still when it counted. It's a good IV and should be good to get through tomorrow's infusion as well. He's happy it's over and that he won't need to get stuck tomorrow as well.
I guess we'll just have to fight through the next two IV's when we come back at the 3 and 6 week marks. But after that, if it's working, we're going to have another Port put in, so he won't have to endure this anymore.
My poor baby has been through so much it almost killed me to hold him down and put him through this 4 times in a week. He's soooo scared of the IV process. But it's over now and he's happily playing video games for the 3rd hour in a row.
Tonight I'm treating him to a movie for our last night in town. After tomorrow's infusion, we hit the road and Home Sweet Home, here we come!
Well, I'll update on the weekend once we've settled back in.
Take Care and God Bless,
Renee
Wednesday, May 9, 2007 2:09 PM CDT
Hi everyone,
Well, there has been a major glitch in the plans. Joshua arrived today at clinic and when they went to flush his IV, it clearly was no longer functioning. Despite our pleas, attempted strong arming, and bribing, he was NOT going to let us put in a new IV. He backed himself into the corner of the treatment room pulled his shirt over his head and screamed no, no, no over and over. I lost it, sobbing right along with him. He has ALWAYS been so compliant when it comes to medical procedures - to compliant. But, he brought all of that to a screeching halt on Monday and today. Soooooo, now we are going to be admitted to the floor.
On the floor it is their intention to try and place a PICC line (a long lasting, semi-permanent IV line) under general sedation. Then he will get his IVIG either tonight or tomorrow and we'll have to stay an extra day to have the last dose on Friday, hopefully in clinic as an outpatient, then home.
It has been a long day today with no success, which is so frustrating for both me and the staff here. I don't want this to be a traumatic event for him, as we will have to come back every three weeks for the long term. We need a more permanent, long term, fix so he's not scared and it's not upsetting to either him or me.
On the upside, he is definately not seizing as much!! No big seizures since last Friday (and he had been having one a day at least). Today he has had one fleeting one that I barely would have noticed had he not been standing right with me. So I don't want to give up on a potentially beneficial treatment.
I'll update more when I can!
Take Care and God Bless,
Renee
Tuesday, May 8, 2007 9:51 AM CDT
Hi everyone!
Well, Joshua is currently hooked up to his IVIG right next to me and doing great. He didn't like the IV start at all and I was suprised at his strong reaction. But, once it was in, all was fine and he has been doing great. He went home with the IV in place and we had a lot of fun at the Ronald McDonald House.
Friday, prior to coming I had called on Joshua's lab results of his immunization levels. I was shocked to find out that he has NO protection at all against all of the things he was immunized against last year. He had a beautiful response immediately after getting the shots so we were discharged from Immunology. But since he had his shots spread out over three different clinics and doctors offices, we thought it would be easier to just get his titers to prove he was protected from everything to show the school nurse at the middle school that his shots were all up to date. I was very shocked to find that he no longer was protected against anything. Soooo, to check his the rest of immune system, we drew some more labs today while here and should know those results before we leave on Thursday. This well tell us if his t-cells are still working well (he had problems with this in the past as well as his b-cells). But, the treatment is IVIG and since that is what he is on, he's now covered anyways.
Ok, Cody. His chart was reviewed by the neuromuscular disease clinic and they decided his issues are not in their realm (GREAT NEWS!) and want him seen by neurology instead. So we are waiting for an appointment at the clinic here at Strong Memorial. He's doing well otherwise.
The rest of the gang is doing great. Since Joshua's sitting next to me, he's bugging me to get off and play PS2 with him so I've got to go.
I'll update soon!
Take Care and God Bless!
Renee
Thursday, May 3, 2007 9:17 AM CDT
Hi everyone,
Well, MRI’s are done, neurosurgery meeting is done and we are no closer to any answers than we were 11 months ago, and more frustrating. . . We have more questions. But in the end. NO tethered cord.
1. When Cody had his MRI they forgot (or the doctor just didn’t order) to scan his cervical (neck) spine. So, we have to go back and do that now, under general AGAIN. Very, very frustrating. Will this give us any answers, probably not, but, it will rule out any surgically related issues anywhere on his spine.
2. Cody’s PT eval was completed and technically, he didn’t qualify. However. . . There always seems to be a “however” doesn’t there. . . He has significant issues. He didn’t qualify because he compensates so well for his virtually non-existent abdominal muscles by using his hips and shoulders for everything. So he moves very well. But, when he has to use his abdominal muscles he becomes quickly exhausted and frustrated. His score was at the very low end of normal (mainly because he won’t walk down the stairs even when you offer to help him, and he won’t go up the stairs without crawling). He passed everything else. The PT did note what my concerns are and saw them very clearly… the left sided weakness, the way he holds his arm out to the side to run and how he seems to only be able to get power from his right leg when he tries to jump. So the PT is going to write a letter to the EI (early intervention) committee and ask them for services based on professional judgment vs. scores. His OT feels strongly that they will since he’s already receiving OT and speech.
3. Since the PT found core weakness, left sided discrepancies and he has a documented neurological bladder problem, he now has to go and be evaluated by the Neuromuscular Disease Clinic out at Strong Memorial. I don’t think I could possibly relay how scared and frustrated and disappointed I am, that yet another one of my children may have a life long condition.
When you adopt a child with known medical and/or developmental disabilities, you have comfort in knowing that nothing you did caused their issues. You are in the position of doing nothing but providing intense love and care so that all of the things they are dealt with can be either fixed or improved. You have a goal, but you didn’t create the need for that goal. . . Someone else did that.
When it’s your own child that is sick/disabled, you now have a whole new set of dynamics in the picture. What did (I) do wrong? Ok, so Joshua was hit from birth, first his kidney issues, then his immune issues, then a brain tumor and then more immune issues, etc. etc. Ok. He was my first homegrown and definitely was a handful. BUT… Cody was suppose to be different. I did everything in my power to have a healthy baby. I took my vitamins, I ate well, I didn’t drink or smoke, I gained a healthy weight (and a bit more LOL) and he was born without major complications. Why then has he had to face one issue after another??? I just don’t understand. I don’t question God’s plan. NO, NO, NO. I don’t believe for one minute that Cody has his problems because of something God has planned for him. I do believe God has given me the strength, sense of humor and tenacity to cope with it. For that I am beyond grateful. But I still wonder why? Cody’s suppose to be the college bound football player that we had hoped Joshua would one day do. Those dreams were shattered, and now they may be again. I know, don’t fault me for the football thing… it’s just a concept. It could be anything, they were/are suppose to be able to go on and do ANYTHING they wanted, and now. . . One definitely can’t and the other, who knows. I’m just sad.
Good news though!!! Yes, we got some very good news too. Joshua remains cancer FREE and he is now over 9 years from diagnosis!!!! NINE years, unbelievable. To think he wasn’t suppose to make it another few hours when he was first diagnosed due to such pressure in his head, and then not suppose to make it after his 15 hour hair raising surgery that resulted in the need to replace his entire blood volume more than 2 times as well as developing surgical meningitis afterwards. Then only given 1/3 chance of surviving the chemo due to his weakened state and 1/3 chance of surviving his cancer. He was given less than 20% chance of seeing his 5th birthday and now. . . He’s 11 and NINE years out from that awful day of diagnosis. YEAH FOR JOSHUA! He hasn’t been told yet of his treatment next week out at Strong (the IVIG infusions) because we want him to have fun this weekend and enjoy his first baseball practice tonight. Then we’ll make it fun and exciting to get to go to Rochester. But he’s cancer free and for that I thank GOD.
Nettie is getting an award today in a special award ceremony at school. I am going to be there beaming and taking pictures galore. This is her first award (for a school related event) and she’s excited and nervous. YEAH FOR NETTIE.
Tray is trying so hard at school and he had a fantastic 2 days this week and only minor infractions the other 2 days. He is reading soooo well it’s hard to believe that he was only just recognizing even the simpilest
words at the start of the school year. His math skills likewise have improved exponentially as well and I’m so very proud of him. YEAH TRAYVON!!
And Marriela, she is LOVING this warm and sunny weather. She has definitely made some improvements in the area of maturity and has been working so hard to “ask” rather than tantrum to get our attention. She has really been trying. I think more and more, she’s going to love kindergarten and will really benefit from the full day program so she’s in a more structured setting for a longer period of time. I can’t believe the little chipmunk I brought home from Boston just a few short years ago is a beautiful little girl ready for kindergarten already. How time flies! YEAH MARRIELA!!
Peter is down in Florida for a business meeting as he and his brother begin to finalize plans to start a new company in partnership with another very well established company. The product they are selling is an amazing piece of technology and will change how things are monitored and inventoried in the coming years. They are working on an RFID device that will replace barcodes, eliminate losing merchandise in large warehouse and can even be used to track people (like children, elderly and those in the criminal justice system). It’s a technology that is already being used extensively but mostly outside of the US. Peter and his brother Perry have partnered with the company that makes these devices and now they are going to go out and market and sell them in mass quantity. It has a huge potential for being very successful for that we are again very thankful!!
Well, that’s it for now. I’ll spare you the details of Joshua’s MRI day as it was a very long, long day (they lost the device to turn off his VNS for over 4 hours so he couldn’t get scanned - hey that's another use for that RFID, track medical equipmetn in the hospital!). But it’s done for another year and I’ll take that any day.
In my thoughts and prayers,
Renee
Monday, April 23, 2007 9:41 PM CDT
Just a quick update to let you know that Cody saw the GI yesterday. I knew it was going to be a waste of time. The doctor is the nicest man in the world, but I don’t trust his medical abilities as far as I can throw him(and trust me, I wouldn’t get him far). I expressed my concerns about Cody’s stooling issues and of course, he announces he’s constipated. I try to explain that he’s not. Even when he has very, very loose bms, he works soooo hard it pains ME to watch. However, all of this fell on deaf ears and he handed me gloves, surgilube, an enema and told me to give him mineral oil each day. Well, since being there he’s had diarrhea ever since and I didn’t use one single thing the man gave me. I asked how do you test for neurogenic bowel and he stated that Cody was to young and would never push on command, etc. etc. However, almost all people who have neurogenic bowels have a spinal cord injury (either from spina bifida, tethered cord, or an accident) so NO ONE would be able to push “on command” since they have no voluntary control of their lower half! So that was not one of the brightest comments I’ve ever heard. SIGH.
But! We also have one MRI down and one more to go. Cody had his brain and spine MRI today and did great! He was started at 9:30 and finished at just before 11:00 and we walked out at 1:00. They kept him longer due to Joshua’s severe reactions to anesthesia. But he had no issues at all and had a great day once we got home.
We did find out though that Joshua had been scheduled for his brain and spine MRI on Monday and there was a major issue with that!! He can have an MRI of his head with no problem, but they have to change the type of coil they use due to his VNS implant. However, they can not use this same coil for his spine so he CAN’T have an MRI of his spine. So instead, we switched it to a CT scan (which is safe because it does not use magnets) for his spine. He’ll still get both done on Mon. but now we just have to prepare to move him across the hall once he’s asleep for his CT after his MRI.
Joshua’s also having all of his labs redrawn again before we start the IVIG to just check and see what his immune system is doing. He’s clinically doing fine (very few infections) so I’d be surprised if there were any issues. But none-the-less, since he’s starting IVIG and he won’t be able to have any levels done while on it or for 6 months after he stops it, it may be a long time before we get a chance again. We’ll do them while he’s sleeping, that way he won’t care. LOL
Ok, that’s all for now. I’ll update more on Monday after we meet the neurosurgeon.
Renee
Hi everyone,
First and foremost. . . Thank you for your kind words of support for the last entry. I was frustrated, angry, sad and tired. Sometimes, yes, just sometimes. . . It wears me down. BUT, I’m doing much better now and so is Joshua.
I’ll actually be adding more to this in the next day or two, but we have a little more information now than we did last week.
Joshua - He and daddy are out in Rochester for the night at the Ronald McDonald House. Peter just called and I could hear Joshua laughing his beautiful laugh in the background. He was watching America’s funniest Home Videos and whatever they were showing he was LOVING it! Now mind you, he’s sitting there with over one hundred electrodes glued to his head with a large cloth “turbin” holding them all up and out of the way. Yet he doesn’t think twice about it. Just enjoys being with Daddy, watching a funny show and beating Peter at BINGO again and again. LOL He has had a couple of seizures that Peter has seen and recorded.
In new news regarding a plan for Joshua. . . They have agreed to try high dose IVIG. Peter and the doctor are meeting tomorrow to go over the admission plan and what we are going to do for access. The plan (rough version) is to admit Joshua for 3-4 days for daily infusions of the IVIG. We will probably put in a PICC line (semi-permanent IV line) because he is such a hard stick to find a vein and keep it. We will then go to 5C (oncology clinic here in Syracuse) for every 3-4 weeks, at least that is what we hope to do. I really don’t want to drive to Rochester every 3 weeks, but will if I have too. If the IVIG is working, then we would probably have to look at putting a port back in. But that’s only contingent on whether the IVIG makes a difference. Oh yeah. . . When’s he’s inpatient they will also do continuous video EEG monitoring as well. At least we have another trick up our sleeves right now to try before heading down that surgery route or dangerous medication route. Please pray that it works!
Let’s see, tomorrow Cody will have his PT eval finally. I am looking forward to what she has to say because I “think” I see more issues with is left side again lately. I have to keep making myself push thoughts of brain tumors and other awful things out of my mind regularly. I am sure if I do see something, and that’s a BIG IF, then it’s probably related to the Tethered Cord issue that he’s having the MRI on Thursday for. But, it’s hard after having one child go through a cancer journey, you know, nothing is impossible now. So, yes, though unlikely in the infinite number, he could have a brain tumor is what I have to keep myself from thinking daily. But, worrying about it will change nothing and he’s getting the right tests so I’m ok for now. LOL Please pray that the answers regarding Cody’s bladder, bowel and left side are easily explained and even more easily fixed.
Today Nettie went out to see her plastic surgeon. She developed a strange bout of cellulitis at the site of one of the scar lines so we wanted him to see what he thought. He wasn’t concerned from his perspective. However, he does want us to follow up with ID because she isn’t on her meds anymore and we don’t really know what her levels of protection are in terms of t-cells. The infection is clearing on its own though without any intervention other than some hot packs and Tylenol. However, now I’m more nervous than ever about her labs. She will be going in the week of the 14th for her 6 week post med stopping labs. We’ll go back on the 31st for the results and a plan of action should anything be off. Sooo, please pray as well for Nettie’s body to be strong and healthy despite being off of her meds.
I haven’t heard anything on Tray’s surgery yet and need to follow up on that tomorrow as well. I am thrilled to report though that he has had a wonderful start to the week and had a great day on Friday as well. He really seems to be happier about school and wants to please now vs. before when he seemed to care less. I don’t know what changed, but I’ll take it without asking too many questions!! I am very proud of him and look forward to showing him his third grade room assignment at the end of July, he sure has earned third grade!!
And Marriela. She was one hot little girl the other night and had a nasty sounding cough. Though I gave her a nebulizer it did nothing for her and she really wasn’t wheezing, just coughing. About midnight she woke up crying that her throat hurt and when I picked her up to comfort her, she practically burned the skin on my arms she was so hot. So I opted to give her a dose of Tylenol with codeine to help quell the cough, address the throat and bring down the fever. It worked like a CHARM!! She even went to sleep on it!! What a blessing to have something that actually helped her and not make her feel worse. It was a crap shoot, but I figured it was the one thing in the house that seemed to address all of her issues in one fell swoop. And it worked. Yeah!! Since then she has just had a loose cough but no more fevers since then. What concerns us is a persistent complaint of pain her belly. She’s been saying it for months but it didn't have any rhyme or reason. And she really only said anything about it when she was upset and crying (and usually that’s because she was in trouble and therefore stressed). But now she’s showing us a particular location and complaining almost daily and consistently that her belly hurts or that she has a tummy ouchie. So, Wednesday we’re off to see the pediatrician to have her belly looked at. Cody’s coming along for the ride as well to have his ears checked, as he keeps digging his little grubby fingers into them. Tomorrow I also have Marriela's CSE/CPSE meetings to go over her IEP and her kindergarten services she will recieve. We think we got good news on Friday that she will be going to Longbranch Elementary instead Liverpool Elementary. That would be wonderful! I'm not expeciting any surprises at these meetings other than where they think she will attended.
Well, just got off the phone with Peter and Joshua is fast asleep. They’re enjoying themselves and Joshua even wants to go see a movie tomorrow if Daddy can find a theater nearby.
I’ll update more when I know more.
Take Care and God Bless,
Renee
Thursday, April 12, 2007 6:42 PM CDT
I don't usually vent here. . . rarely feel the need too. . . but tonight I am. Joshua has been through enough, yet he has so much going on. Tonight, while carrying his basket of wrestlers up to his room he had another drop seizure in his room and slammed his head off of his door. Why does he now have to endure these types of seizures, as if the many other types weren't enough. Now, without constant supervision he's at risk of really hurting himself. Yet, he's an 11 year old boy who does NOT want someone following him all over the place! How do you handle his desire to be normal in a very abnormal situation??? Like I said, I take most of everything in stride. My kids are walking (or wheeling), talking, miracles. I know this, I praise God daily for this. Yet, sometimes, it's just too much to watch. My baby has been through so much in his life, major kidney surgery at only 3 months old, many, many infections before being diagnosed with a brain tumor at 27 months. 2 brain surgeries, 7 months of living in a hospital after being pumped full of poisons, living through surgical menengitis and having to relearn how to sit, stand and walk all over again. 6 weeks of radiation to his brain that resulted in additional damage to his developing brain. Chronic, severe ear, sinus and lung infections. . .The ear was so bad at one point his skin around the outside was being eaten away! Finally, discovered he had a severe immune deficiency and had to have another central line placed, into the hospital again for high dose antibiotics and ear surgery followed monthly IVIG infusions. Multiple dental procdures due to the damage the chemo caused his teeth including major surgery to fix an abscess, put on crowns and pull destroyed teeth. His port BROKE, if you can believe that one and he had to have an emergecy surgery to remove it since it migrated to his heart. He has lived with chronic, debilitating seizures since he was 4 years old despite everything we've thrown at them they keep coming. He had surgery to put in a VNS. He has kidney stones that cause bleeding unexpectedly. He's had his tonsils and adenoids out as well as resection of a badly infected sinus due to the severe sinus infections. He's dealt with chronic constipation since he was an infant and now it's resulted in the need for another kidney surgery and possible placement of permenant catheter in his abdoman to allow us to clean him out from the outside. What 11 wants to deal with that!!!! And now. . . these drop seizures which are leading us to needing yet another brain surgery. When will he catch a break? My baby needs a break.
Ok. That's all for now. I'll find some chocolate and a big glass of milk and cuddle with Cody and it will all be better tomorrow. But before sleeping tonight, I will be praying. . . praying for my baby to catch a break.
Hi everyone,
Never a dull moment here! LOL We had a very nice Easter with my mother, sister and nephew, Justin. Justin is still with us for the spring break. The kids are having a blast with their cousin!
Yesterday we went and saw the pediatric surgeon for Cody. We had a very nice talk and he agrees that all of Cody’s symptoms point to a tethered cord. However, if for some reason the MRI and neurosurgeon can’t find anything wrong, then the surgeon suggests we do a rectal biopsy to rule out Hirschprungs disease. He said if it were Hirschprungs it would be a very, very unusual presentation and wouldn’t explain the urinary issues, but could explain the bowel issues. We also discussed Joshua’s history of constipation and how he and Cody are so very much alike in their development. So he wants us to bring Joshua in to see him in conjunction with GI to evaluate him for the ACE procedure. This is where they go in through the appendix and insert a small catheter (actually, they use a the same feeding tube that Nettie has in her stomach) into the appendix and down into the colon. This allows us the ability to give him special fluids directly into his intestinal tract to flush him out daily. This is important because his chronic constipation is the reason he will need kidney surgery in a few months because he has very little sensation in his bladder due to all of the pressure from the constipation. The reduction in sensation results in him not going to the bathroom often enough thus allowing urine to back up into his kidneys and cause damage resulting in him needing another surgery to repair it. Sooooo, if in fact he is a good candidate and the surgeon and GI thinks it will help, then we would have them do it at the same time they do the kidney surgery.
Both boys are having their MRI’s in 2 weeks and then on the 30th (the day of Joshua’s MRI) we are going to see Dr. Canut the neurosurgeon to discuss the results of both sets of MRIs as well as discuss the possible corpus collasumotomy for Joshua. I don’t think he has done enough here to make me comfortable, but at least we can bounce our ideas off of him and find out what kind of success rate he has witnessed. So the 30th is a big day for us. We may be discussing major surgeries for both boys or neither boy depending on the results. Should the day be inconclusive we may be looking at a biopsy for Cody. We already know that Joshua will need the kidney surgery now we just have to see if he also needs the ACE as well.
We also have an appointment for NYU down in the New York City for Joshua to see their comprehensive epilepsy center. We are going on May 15th to discuss with them any additional options we have missed. In all likelihood we will also be having a surgical consult as well with their neurosurgeon.
Tray is doing great and still waiting for his surgery date. I am hoping sooner than later. His snoring is worse than ever right now because he has a cold. Now that I know his snoring indicates his heart is working much harder than it should be, therefore causing a critical overload on the right side of his heart, I want the surgery done ASAP. Oh yeah, I think I forgot to tell you that before. The cardiologist explained that the findings in the sleep study were very bad for his particular heart defect, for the above reasons. But other than that, he’s having a blast with Justin!
Marriela recovered quickly from her cold and wheezing with no problem. She has been very wired lately, but nothing to bad. She has been spending a lot of time outside with the boys and enjoying it. Last night however, she was up for almost 4 hours singing and talking to herself (though not quietly!) which kept me up almost all night long. I thought I was going to go crazy and was just going to go in and beg her to fall asleep, but all of a sudden, she got quiet and about 5 am she finally fell asleep. But she was up again at 9:00 am to start it all over again!!! LOL God love her.
Nettie is spending the night at her nurses house. She is just happy as a clam to be treated like a queen at Stacey’s house. I am so glad we found Stacey when we put our ad in the newspaper. She is wonderful to Nettie. She is also wonderful to all the kids and they like her right back. Nettie will also be spending the weekend with Joshua at Casey’s Place this weekend so she has had a full week! We go back the second week of May to have her first set of labs drawn since stopping her meds. I am excited and scared beyond words. I want so bad for her to have minimal changes in her viral load and t-cells so she can continue indefinitely off of her meds. But scared that she has had a huge increase in her viral load and we’ll be back pedaling for meds now trying to get her back to where we were. Only time will tell.
Our ramp is done!!! It looks awesome and starting next week, Nettie will be able to bring home her power wheelchair. She is sooo happy about that. Now we have to reseed the front lawn and paint the ramp to match the house (I don’t like the all wood look as much as painted porches). We’re also getting a quote for some gutter work on the front of the house and a quote for a ramp around the pool.
We haven’t heard back yet from Sebastian’s social workers. I do know they were meeting with another family yesterday and then they were going to give them the opportunity to see if they were still interested since getting the paperwork on him. Still hoping God will give us a definitive sign one way or the other as to whether this little boy should become a part of our family. Maybe after our meeting with him and the foster family we’ll have a better idea.
Well, that’s it for now!
Take Care and God Bless,
Renee
Friday, April 6, 2007 7:54 PM CDT
Hi everyone,
I know it has been a little while, but alas, things are always a bit busy here so there isn’t always time to “sit” and write. But here we go. . .
First, Joshua. He has been having a hard time with his seizures and yesterday at school he had another “drop attack” where he just tenses and falls straight down. These are the scariest types because there is no warning and if they ever happened while he was on say an escalator, or going up stairs or in the middle of a street, etc. he’d be in real trouble. So I aggressively tracked down his neurologist and spoke to him at length about our options. Sadly, they are few. He had some, a surgery in which they sever 3/4 of the nerve bundle connecting the two halves of the brain (this has been very successful in stopping the “drop attacks” by over 90% in most cases but can leave the patient with new deficits), a new drug called Felbatol (also very good for Joshua’s seizure types, but has a high and unpredictable risk of severe Aplastic Anemia -which requires a bone marrow transplant to cure, and sudden liver failure - resulting in the need for a liver transplant). That’s all he had. Both are very scary options if you ask me. I had been doing some research and came up with some of my own ideas but he had never used either treatment (high dose steroids and IVIG) for the treatment of seizures. He was however, very willing to consider anything at this point and was going to confer with his colleague to discuss any other rocks we have left unturned. I have also made a decision to move forward to taking Joshua to NYU down in NYC for a full comprehensive work-up including a possible surgical evaluation. They see a lot more kids like Joshua that either Syracuse or Rochester so we’ll see what they offer. He is scheduled for a 24 hour portable EEG on the 24th and 25th in Rochester (he’ll stay at the RMH) as well as his MRI on the 30th, so they may want those results first before seeing him.
Tray saw the ENT last week and she reviewed his sleep study with me. NO WONDER why this kid is so crabby at school. He had over 40 episodes of sleep apnea and woke up all 40 of those times. He only had about 10% REM sleep which is your restorative sleep and should actually make up about 60% of your sleep. He’s chronically tired. Sooooo, he’s having his tonsils and adenoids out as soon as we are able to get a baseline EKG and the pre-op stuff in order. He’ll stay overnight at least one night and more if he has any cardiac issues. But I think he’ll be just fine. And this should really help him get a good night sleep finally and maybe break this ADD behavior we all thought he had!
Marriela is doing well except for a bit of wheezing she developed yesterday. Doing our nebs and seems to be holding her just fine. She’s been a lot more irritable the past several days though and if it continues I think I’m going to take her in to be looked at to be sure I’m not missing something. She tends to be very cranky when she has an underlying issue (ie. Ears, lungs, skin, etc.). All looks good to me, but you never know.
Nettie is doing great. She did her IVIG today at Grandpas in Elmira with mommy doing it. It’s been a while since I had done it but, hey, it was like riding a bike. . . Once you’ve done it, it comes right back to ya. She is enjoying not being on any meds right now other than still having belly pain in the middle of the night that we had always thought was med related. Now that it’s still here, and actually getting a bit worse, I think it’s her IBS (irritable bowel syndrome) so we did have to restart her back on some meds to try and counter that. But overall she’s doing well. The biggest news for Nettie is that HER RAMP IS ALMOST DONE!!!! It looks good and she used it today with her walker and was so proud that she could get in and out of the house so easily. They’ll be finishing it up next week.
And then Cody, nothing new to report here other than he’s actually got a real word now!! He says “BA” for ball. Loud and clear, no mistaking what he’s saying for sure (especially when he’s screaming and pointing at a ball! LOL) His MRI was moved to the 26th so it isn’t going to be on the same day as Joshua’s. This was a real big relief for me, as I just didn’t know how we were going to do that. Next week he sees the Ped. Surgeon to see if they feel any tests need to be ordered to further evaluate his bowel function. He will also be seeing the GI doc in a couple of weeks to find out what direction they want to take with his bowels as well. Then the MRI, And after everyone takes a final look at all the results, they will let us know if surgery is needed.
As I mentioned above, we went to see Peter’s Dad today for Easter and had a wonderful dinner with him, Peter’s sister’s family as well as his brother, Guy’s family. It was a full house, but nice. Tomorrow my Dad, Mom and sister are coming into town with my nephew, Justin, who will be staying the Spring Break with us. He’s only 6 weeks younger than Joshua and we really enjoy having him stay with us. Last summer he spent 2 weeks and this summer we’ll try for 3 I think.
Many are wondering about little Sebastian. . . Well, after a lot of consideration, we are going to go ahead and meet him. His paperwork was very grim, but so were ALL of our kids prior to coming here. I don’t think we do anything special, but we don’t expect the worse that’s for sure. . . And that’s what the doctors have done for Sebastian. So until I meet him in person, I still don’t know if he’ll ultimately become a member of our family. We will also have to weigh his needs in regards to Joshua and Cody both possibly needing neurosurgeries and such. So it’s still not a done deal. . . But not an undone deal either. God will guide us in our decision, I just know it. But feel free to say prayer to tell God to show us one way or another what we should do! Thanks!
Ok, that’s it for now.
HAPPY EASTER.
Take Care and God Bless,
Renee
Monday, March 26, 2007 10:25 PM CDT
Hi everyone,
Just thought I’d through out a quick update while I have a free moment before finishing Nettie’s hair again.
We have an MRI date for both boys. I lied before when I said they would be on different days… they aren’t. April 30th Joshua goes in at 8:00. He has to be the first one because he has Malignant Hyperthermia, a very severe reaction to certain common anesthetics so he goes before any of the machinery has been contaminated with the gases that could cause a reaction. Cody will go immediately after Joshua. Sigh. It will be a very long day. Both boys MRIs will last about 2 hours each since they are full head and brain with and without contrast. But at least we will have them done and out of the way.
Big news with Nettie! After all of the discussion of needing to change her meds, going to hypnosis to learn to swallow pills (which worked like an amazing charm!) and the angst of which meds to change to. . . She is going OFF all of her meds instead!! I was very shocked at the presentation of this idea, but the doctors had a reason for going this direction instead. Mainly, that Nettie almost always has some sort of reaction or side effect from her meds (bleeding ulcers, eye problems, liver problems, lip dystrophy - the reason for her weight gain, etc.) Since this is the case, starting her on all new meds, most of which are a combination pill of several meds, we risk her developing a side effect and then not being able to determine which med is the actual cause of the problem, thus eliminating another whole slew of meds from her potential choices. So instead changing, we are going to stop them all together and monitor her blood work closely every month for about 6 months. Then we are going to have another full evaluation from the eye doctor. If the eye problem has stabilized or improved then we know that the med was the cause, but if it is worse, then it wasn’t the med. If it turns out not to be the med, then we have this same regime to go back on if she needs to based on blood work. BIG AND SCARY changes for us!! Nettie has been on her HIV meds since 12 months old and has never been off of them for the past 16 years! But she is excited to try something new.
Joshua continues to have seizures daily again. We go to Strong on the 23rd of April for a 24 hour EEG. We’ll stay at the Ronald McDonald House for those 2 days. There is nothing we can really do at this time other than stay on top of him with his magnet. Today he was in the nurses office at school for a headache and he had become very emotional and disoriented. I believe he had a seizure but it wasn’t actually witnessed. However, he rested for about 45 minutes during which time I ran him over some Motrin and he looked a bit better and actually went back to class. YEAH for Joshua!! Normally, once he sees Peter or I, he gets the idea that he’s going home. . . But not today. . . Never even asked. Just holding my breath that he doesn’t keep escalating and need a hospitalization.
Tray continues to struggle at school. Last week things weren’t made better when he had a doozy of a Migraine and vomited several times at school and home. But, after he was done vomiting, he was fine and actually went back to school for the rest of the day (about lunch time on). He still continues to refuse to do work, blatantly talks back to teachers, etc. I am just dumbfounded as to how to address this since we don’t see ANY of this at home. Today was a VERY bad day and Peter and I finally had it. We decided the nice game wasn’t working, the pleading to do better each day, the bribes, the positive reinforcement, etc. So we went old school on him and he’s PS2, TV, and computer grounded x 2 days. For each time he gets a bad report, or worse yet, another phone call home or trip to the princpal’s office, he looses a stuffed animal as well as the above privileges for another 2 days. He’s going to be very, very, very bored if he can’t play with his brother with any of the above items! In addition, we had a very stern talk and hopefully he’ll think carefully about his choices in school now. LOL I shall keep you updated on this little saga. LOL
I had my meeting with Marriela’s teachers and therapists to discuss our plans for kindergarten. She is doing SOOO good!! I was thrilled with her testing scores and found that she is in the average range for intelligence, language and now, even gross motor skills!! She has definite weaknesses that warrant continued special education services, and all agree that her severe ADHD is really impacting her learning abilities. But despite the ADHD, she scored very well on her tests and we have very, very high hopes for a wonderful school year. Her school psychologist was going to put in a call to the assistant director of special ed to request that Marriela be allowed to attend the same school Annette and the boys have all been at. I pray that he is successful in advocating for that and we don’t have to worry all summer about what school she is going to be going too.
And finally Cody. He is doing fine. He has made some improvements in the past week on his speech and is doing very well with some “b” words!! He imitated “beep-beep”, “bo-bo” (pacifier), and “pop” which comes out as “ba ba”. He still signs a lot and we’ll continue to work on that, but I think we’ve turned a corner and things are going to start falling into place speech wise soon. In addition, a referral for a PT eval was requested to address his low trunk tone and w-sitting as well as his very flat feet (Joshua has very flat feet too). I think we’ll probably get him some inserts very early so he’s use to them, because Joshua needs them and won’t tolerate them because he was so much older when he got them. Now we just need to figure out his “neuro” issues and we’ll be all set.
Tomorrow Peter and I are going out to see Sebastian in Buffalo. He’s the little boy we were looking at to join our family. I’ll let you know how it goes we get back. Maybe it’ll be “My 6 Angels” after tomorrow. But it all depends on the level of medical issues he has and his ability to continue to make developmental progress. I have to be fair to all of the kids and a child who will never be able to interact with them or become and active member of the family won’t be a good match. There is a strong potential that Sebastian is too complex for our family lifestyle. But that’s what we’re going out to find out. . . We shall see LOL.
Take Care and God Bless,
Renee
Tuesday, March 13, 2007 10:42 PM CDT
Hi everyone,
I know I just did an update but that one was actually done last week, I just didn’t get it sent out on time. Oops.
Well, it’s only Tuesday and I’ve already been to 4 doctors appointments with 3 different kids. LOL Actually this whole week has been a bit overwhelming and it takes a lot to do that to me.
First we’ll do Annette. She is great. Had her pulmonary appointment on Monday and did the best she ever has on her PFT’s. PFTs stand for Pulmonary Function Tests and she has always had significant in both her output and intake of air. However, Monday she did the best she ever has and only needs to continue taking her once a day Pulmicort inhaler. The down side is, as good as she did for her. . . It would not be good for you or I at all. All of her pneumonias as a young child caused lots of scar tissue to build up so her lungs can’t expand to allow the normal amount of air in, but they are also very stiff and can’t push all of the air out. But she’s been living this way for almost 17 years now and it is nice and stable and even improved since her last appointment a year ago. WAY TO GO NETTIE!
Nettie and Ginger (the old nurse) have been working hard to break the “new” nurse, Stacey in. Nettie seems to like her and I think she’ll be a great match. We pleased that Ginger will still be able to help at nights and weekends, so now we have two wonderful nurses!
Ok. . . Whose next???
Marriela - she’s also great. We have been doing our parenting classes and I love them. I learned a lot yesterday about better ways to “play” with Marriela to help her learn more appropriate play skills as well as allow for some quality interactions, not just all rough housing (which is what she’d have you doing 24 hours a day if she could!).
Trayvon - he is having a better week. Not perfect, but MUCH better than last week. Tonight he did his spelling homework completely independently and was surprised I refused to help him (I would have if I really thought he was stuck. . . But he wasn’t, so I didn’t). I was very proud of him. I also received a letter from the Cardiologist finally with the results of Tray’s sleep study. It seems the he is having “mild but significant sleep apnea” which is very bad for his type of heart repair. So now we’re off to ENT to see if this is an obstructive issues (ie. Adnoids or tonsils) or if this is a neurological and he just forgets to breath. Personally I find the idea of something as mild but significant to be a bit of an oxymoron, but maybe that’s just me. LOL
Ok, now my two trouble makers of the week.
Cody. . . AHHHHHHH. . . The saga continues. Just before Cody was admitted for his stomach flu, he saw the urologist finally (after waiting almost 10 months). She was very concerned with his last tests that the surgeon had ordered when he was an infant, as well as his current issues with going number 2. So she ordered a test called a Urodynamic study. Cody is NOT a fan of this test. . . Neither was Joshua and now I know why. However, even before the test was completed, I knew there was an issue. Even after Cody finished peeing all over everything (or at least it felt that way) the nurse was able to pull back over half of the fluid they put in his bladder each time. This means that he isn’t able to empty his bladder completely just like when he was an infant. The doctor called today and said that his bladder pressures were very high (you and I never get above 30 - 40 even if we’re “holding” it… but Cody’s was over 80 most of the time). This is consist with Neurogenic bladder which is what the surgeon called it when Cody was only 4 months old. The problem with the diagnosis is the “neuro” part of the word. It means that there is a neurological reason for this issue and that means that he has to have another complete workup for a tethered cord again. So sometime next week we go back for another complete brain and spinal MRI to look for that dang “neuro” issue. In addition, he now needs to have a neurosurgery consult as well as much more detailed GI workup to determine the extent of his bowel issues (in other words, does he have nerve issues preventing him from pooing correctly). Sigh. . . Sometimes you gotta laugh. In addition to all of this, I am more and more concerned that Cody has a communication problem called Apraxia. This is where the child knows everything your saying (and boy does he) but for some reason his brain isn’t able to communicate to his mouth what he wants to say. Cody still has no words, not one. He has a few newer sounds he can make, but mostly he says Eh for everything. He is very smart though and now uses 5 signs correctly (eat, drink, ball, car , milk and more). The fact that he can use signs to communicate but can’t make sounds is really the concerning issue. I really, really just want him to wake up tomorrow and have everything go away. I really thought he was going to be the one child with no issues and we would get to finally witness what normal development meant in a child. But at least we know where all the specialists are and how to get him the help he needs!
And finally Joshua. I took him Brain Tumor Clinic again (actually, I had completely forgotten that we had gone back in October and didn’t need to come back for a year…oops) to arrange his yearly MRI. I had a very nice conversation with Dr. Kennedy who was actually the original doctor that came to give us Joshua’s initial diagnosis 9 years ago! She is now running the Brain Tumor Clinic since Dr. Dubowy’s departure. I explained that Joshua needed his MRI, but that he now has a VNS in place so could she arrange for neurosurgery to meet us at the MRI to turn off the device and then to return it to its current settings after his scan. She said she would definitely work that out. Then we determined that Joshua should be able to do a lighter sedation than general and that she would talk to anesthesia to arrange something. I also shared with her all of the previous issues Joshua has had with his bowel, his kidney reflux and urinary issues and that Cody and he seem to be following virtually identical paths in many, many ways. I wanted to know if he could also possibly have a tethered cord that was not diagnosed yet. She reviewed his previous spinal MRI reports and found that none had been done of the entire spinal column. So guess what… yeppers, another MRI in our near future. So Cody AND Joshua will be having full brain and spinal MRIs in the next week or two. NO, NOT ON THE SAME DAY LOL. Won’t that be fun. Here’s praying that if there is an issue, they find it and it can be fixed easily. If they can’t find anything wrong on the MRI, then I don’t know what the means for Cody. For Joshua, it will mean nothing changes and he remains cancer free!!! YEAH! If they do find tethered cords for one or the other it will definitely mean surgery and a stay in the hospital. But we’ll wait until the results of the MRI’s to even begin to think of all that.
Well, that’s it so far. Several more appointments this week. Nettie goes to hypnosis to see if she can learn to swallow pills. Cody goes to ENT to have his ear tubes looked at.
Oh yeah, did I mention that Peter is out of town to pick up his dad and VA and I have had 3 - 4 kids at every doctors appointment. If I’m not insane at the end of this week, then I am safe from insanity for life. If this doesn’t do it, nothing will LOL.
Take Care and God Bless,
Renee
Saturday, March 10, 2007 5:01 PM CST
Hi everyone,
HAPPY BIRTHDAY DADDY (PETER, HUSBAND, BROTHER, UNCLE, GODFATHER)!!
WE LOVE YOU WITH ALL OF OUR HEARTS.
We have been busy here. Cody, didn’t get better like we had hoped and earned himself his first overnight in Club-Med. We were sent to the ER by the pediatrician on Friday afternoon for some simple fluids to help him “perk-up”. . . 12 hours later, no perkier and still puking and pooping, we were finally put in a room at Crouse Hospital. He was still very lethargic even at 2:00 pm but, suddenly, after the doctor checked him out and told us there was a strong possibility we would be staying an extra night, Cody perked up. In fact, he started playing hard, running around his room, playing with some toy cars from the playroom and eating a whole bowl of chicken noodle soup with NO poop or puke. Soooo, I asked to come home (I was suppose to be scrap booking for the whole weekend after all!). Of course, within the hour of getting discharged he started pooping like crazy again, but now he was drinking Pedialyte regularly and happily took several bottles of formula as well, so I wasn’t that worried until the next day when it didn’t seem that it was going to let up. I did go scrappin’ Saturday night, came home to sleep from 1:30 am to 7:00 and then I went back. Peter called me to give me diaper updates and I was thinking that he was going to have to go back to the ER. . . But then the pooping magically stopped and has yet to return! YEAH!!!! He seems to be doing well and now we just have to plump him back up. He lost 3 pounds in the past week which is a lot for my little guy. Otherwise, we’re back in business.
Joshua is doing better seizure wise, but only after upping his meds in response to a big seizure that knocked him right off his feet and into another room, onto a table, flat on his back. He now has a huge bruise on his butt and back. I called Rochester first thing in the morning and told them I was increasing his one med rather than “waiting and seeing” any longer. So far, so good. The seizures have definitely dissipated and I think we’ve got a little more time before worrying about changing the meds. We did order a 24 hour portable EEG just in case we need it because there is a long waiting list for them. We did get some bittersweet news from the school. Joshua has declined significantly from cognitive standpoint on all of his testing. The scores were so hard to hear, especially since before his brain tumor he was in the high range of IQ. However, since his scores fell, he is now approved for the program we were hoping they would allow us to put Joshua in. So he will get the best of both worlds, life skills AND academics. Like I said, bittersweet.
Marriela is doing great. We started some “parenting classes” with a professor from SU. She runs a program for parents of kids with developmental delays, challenging behaviors and transitioning to kindergarten. I hope to learn a lot and gain some insight into how to challenge her amazing energy and “spunk” into a more creative manner. The professor teaching the class seems very knowledgeable and I enjoy her sense of humor. We also had a visit from the DSO to evaluate Marriela for a special bed that would allow her to be in a regular size twin bed, but with sides like a crib. She still sleeps in a crib because we are very afraid to let her move to a bed when we can’t keep a close eye on her (since we are busy sleeping). Marriela is the type of child who would just walk right out the front door (she actually has and a couple we met at a baseball game let us know that they had walked her back and put her back in the house - we never even knew she had left!!!!!). But they suggested instead a “dutch” door. This is a door that opens separately on the top and bottom so we can close the bottom (plus there is no knob on the inside of the door) to keep her in the room, but can also leave the top open so we can hear her at night. Here’s hoping it works because it would be so much nicer for her to be in a “big” girl bed but also safe at night. They are also going to get her an indoor trampoline to bounce on to expend some of her energy and therefore make her more tired and thus more likely to sleep through the whole night. . . Reducing her chances of getting into trouble at night. Sounds good to me!! LOL
Nettie is doing great. She spent the weekend at Casey’s Place and had a good time. It was great that she was away for the weekend since she would have worried so much with Cody being in the hospital. I didn’t even tell her that we were inpatient because I knew that she would assume that I wouldn’t be there when she got home, even though that assumption would have been 100% wrong. She is such a worry wort. We are also in a position to have to hire a new nurse because her current one, Ginger, needs benefits and therefore took a position with an agency. We have hired Nettie a young, outgoing girl named Stacey and we’re hoping she is able to pick right up were Ginger leaves off, so Nettie doesn’t get all stressed out. I’ll keep you up on the transition!
And finally, Trayvon. He is doing extremely well in school!!! YEAH TRAY!! He has had a solid week of all stars on his star chart. Apparently has come to an important realization. He has decided he wants to be a scientist and can’t be a scientist if he doesn’t learn how math and science. Soooo, lo and behold, he’s doing his math and other school work with NO problems at all and it is really paying off. He is sooo pleased to come home and show us his wonderful day and I am so happy for him to finally feel successful on a daily basis. Here’s praying that the great streak continues! Well right after I typed this update, Tray ended up in the principal’s office because he “accidentally” pushed the line-leader in his room. Then he “accidentally” missed his bus and I had to go get him. So the streak came to a screeching halt. But maybe next week he will pull it together. We’ll see. He did awesome in Soccer though!
Other than our stay at Club-med, two soccer games (and pictures) the completion of one really awesome Middle Ages Castle (for Joshua’s 6th grade SS class) and a weekend of scrap booking, everything was pretty calm here. LOL
In my thoughts and prayers,
Renee
Saturday, March 10, 2007 4:58 PM CST
Hi everyone,
We have been busy here. Cody, didn’t get better like we had hoped and earned himself his first overnight in Club-Med. We were sent to the ER by the pediatrician on Friday afternoon for some simple fluids to help him “perk-up”. . . 12 hours later, no perkier and still puking and pooping, we were finally put in a room at Crouse Hospital. He was still very lethargic even at 2:00 pm but, suddenly, after the doctor checked him out and told us there was a strong possibility we would be staying an extra night, Cody perked up. In fact, he started playing hard, running around his room, playing with some toy cars from the playroom and eating a whole bowl of chicken noodle soup with NO poop or puke. Soooo, I asked to come home (I was suppose to be scrap booking for the whole weekend after all!). Of course, within the hour of getting discharged he started pooping like crazy again, but now he was drinking Pedialyte regularly and happily took several bottles of formula as well, so I wasn’t that worried until the next day when it didn’t seem that it was going to let up. I did go scrappin’ Saturday night, came home to sleep from 1:30 am to 7:00 and then I went back. Peter called me to give me diaper updates and I was thinking that he was going to have to go back to the ER. . . But then the pooping magically stopped and has yet to return! YEAH!!!! He seems to be doing well and now we just have to plump him back up. He lost 3 pounds in the past week which is a lot for my little guy. Otherwise, we’re back in business.
Joshua is doing better seizure wise, but only after upping his meds in response to a big seizure that knocked him right off his feet and into another room, onto a table, flat on his back. He now has a huge bruise on his butt and back. I called Rochester first thing in the morning and told them I was increasing his one med rather than “waiting and seeing” any longer. So far, so good. The seizures have definitely dissipated and I think we’ve got a little more time before worrying about changing the meds. We did order a 24 hour portable EEG just in case we need it because there is a long waiting list for them. We did get some bittersweet news from the school. Joshua has declined significantly from cognitive standpoint on all of his testing. The scores were so hard to hear, especially since before his brain tumor he was in the high range of IQ. However, since his scores fell, he is now approved for the program we were hoping they would allow us to put Joshua in. So he will get the best of both worlds, life skills AND academics. Like I said, bittersweet.
Marriela is doing great. We started some “parenting classes” with a professor from SU. She runs a program for parents of kids with developmental delays, challenging behaviors and transitioning to kindergarten. I hope to learn a lot and gain some insight into how to challenge her amazing energy and “spunk” into a more creative manner. The professor teaching the class seems very knowledgeable and I enjoy her sense of humor. We also had a visit from the DSO to evaluate Marriela for a special bed that would allow her to be in a regular size twin bed, but with sides like a crib. She still sleeps in a crib because we are very afraid to let her move to a bed when we can’t keep a close eye on her (since we are busy sleeping). Marriela is the type of child who would just walk right out the front door (she actually has and a couple we met at a baseball game let us know that they had walked her back and put her back in the house - we never even knew she had left!!!!!). But they suggested instead a “dutch” door. This is a door that opens separately on the top and bottom so we can close the bottom (plus there is no knob on the inside of the door) to keep her in the room, but can also leave the top open so we can hear her at night. Here’s hoping it works because it would be so much nicer for her to be in a “big” girl bed but also safe at night. They are also going to get her an indoor trampoline to bounce on to expend some of her energy and therefore make her more tired and thus more likely to sleep through the whole night. . . Reducing her chances of getting into trouble at night. Sounds good to me!! LOL
Nettie is doing great. She spent the weekend at Casey’s Place and had a good time. It was great that she was away for the weekend since she would have worried so much with Cody being in the hospital. I didn’t even tell her that we were inpatient because I knew that she would assume that I wouldn’t be there when she got home, even though that assumption would have been 100% wrong. She is such a worry wort. We are also in a position to have to hire a new nurse because her current one, Ginger, needs benefits and therefore took a position with an agency. We have hired Nettie a young, outgoing girl named Stacey and we’re hoping she is able to pick right up were Ginger leaves off, so Nettie doesn’t get all stressed out. I’ll keep you up on the transition!
And finally, Trayvon. He is doing extremely well in school!!! YEAH TRAY!! He has had a solid week of all stars on his star chart. Apparently has come to an important realization. He has decided he wants to be a scientist and can’t be a scientist if he doesn’t learn how math and science. Soooo, lo and behold, he’s doing his math and other school work with NO problems at all and it is really paying off. He is sooo pleased to come home and show us his wonderful day and I am so happy for him to finally feel successful on a daily basis. Here’s praying that the great streak continues! Well right after I typed this update, Tray ended up in the principal’s office because he “accidentally” pushed the line-leader in his room. Then he “accidentally” missed his bus and I had to go get him. So the streak came to a screeching halt. But maybe next week he will pull it together. We’ll see. He did awesome in Soccer though!
Other than our stay at Club-med, two soccer games (and pictures) the completion of one really awesome Middle Ages Castle (for Joshua’s 6th grade SS class) and a weekend of scrap booking, everything was pretty calm here. LOL
In my thoughts and prayers,
Renee
Tuesday, February 27, 2007 3:58 PM CST
Hi everyone,
I hope this finds you all well. We’ve been doing good here for the most part. A little excitement but nothing we can’t handle. LOL
Let’s see, Tray started out the weekend with a bang. He woke with a “kink” in his neck on Saturday morning and very sore. We tried some massage, some heat and stretches. He continued to walk around all day with his head bent over his left shoulder. Later in the day after another round of heating packs I discovered a large “knot” of lymph nodes all swollen up on the sore side of his neck and low and behold, when asked where it hurt the most, it was right where the knot was. So I thought we would wait it out for antother day to see what would transpire. But that night he was miserable and I knew a trip to the ER was in our future early Sunday morning. So after getting dressed and organizing the house a bit off we were to the ER where Tray earned himself yet another CT scan and an IV. He was SOOOOO very, very brave with the IV. I couldn’t have been more proud if I tried. He said he didn’t want it, but would stay still and breath so they wouldn’t have to do it two times. How grown up is that. Thanks to God that they got it on the first try and he hardly felt it. Mary Lou was wonderful and very, very kind to Tray. The CT scan revealed nothing ominous (I knew in my heart they were checking him for things like lymphoma and abcesses. . . But had no fear that he had any of these things). So he was given a dose of IV antibiotics and sent home with Motrin and a week of oral antibiotics with the diagnosis of possible infection of the lymph nodes. Today his head is pretty much upright and he is only taking the Motrin every 8 - 10 hours (usually after sleeping or playing too hard). So obviously he had some sort of infection that the antibiotic is working on.
Ok, next is Joshua. He is continuing to have seizures despite the increase in the Vagal Nerve Stimulator. I am going to give him several more days to see if he levels off and just need to acclimate to the new VNS levels. If he doesn’t stop in the next week, we will have to go back to Rochester to have them return the VNS to its old levels and increase his one med that has room to increase, his Keppra. This one can make him very moody and angry in the beginning so I don’t like increasing this one that’s why we were trying other options first. We’ll just have to wait and see.
Then, if that wasn’t enough for Joshua, he had to stay home from school Monday with a whopper of a stomach ache. We had thought it was another “autonomic seizure” but as the day went on and the pain persisted, we realized he must just have a stomach bug. He recovered fully today and off to school he went.
Nettie is doing fantastic and has returned full force to school as if nothing ever happened. She even went swimming today with her class. I am sure she couldn’t wait to show off her new shape for the teachers since she had such a hard time with even things like life jackets and such. Now everything fits beautifully. I am so happy for her that she feels better about herself. YEAH Nettie!
Marriela failed her new increased drug trial miserably!! She was up until 4 in the morning “talking” to the whole family. She asked about 1 million questions and was driving me to the brink of sanity by the time she finally fell asleep. Soooo, for now, NO MEDS!! LOL We’re going to wait until she’s a bit older and has more meat on her to process the drugs better and decrease her hypersensitivity to them. We’ll revisit the meds again in the future when she’s bigger.
And again, last, but not least, Cody Bear. He has gotten a much worse version of Joshua’s stomach bug. He had his first experience with actually vomiting last night, dry heaves and all. Today has been sleeping all day and is running a 102 fever, but the wretching has come to an end. I felt so bad as he laid there (he fought tooth and nail NOT to sit up even when dry heaving) wretching and in a cold sweat. It is his first real “illness” outside of the ear infections and such. He is very lethargic even now at 3:30 but he is drinking a bit so we’ll wait until tomorrow to see if he needs to go to the doctors.
Well, that’s it for now. Getting Marriela ready to go to counseling with Tray and Joshua had to stay after for a Math Review class the 6th grade is doing. Oh yeah, Tray and Marriela are playing soccer every Saturday and LOVING it!!!! Marriela gets mad as @#$% that the kids take the ball and according to her formal complaint to the coach “The kids are being mean to me and won’t give me the ball!!” You have to laugh as she races madly across the floor in the general direction of the ball, with a frown on her face and attitude just oozing out of every pore of her body.
Tray on the other hand is wonderful and really has grasped the various positions and concept of soccer remarkably fast!! He is good with the exception of turning his head and body each time someone kicks the ball to him. LOL I think this will be a good sport for him for a while.
Well, baby is still very, hot and not looking well. Need to go and do some nursy kindda stuff I think.
In my thoughts and prayers,
Renee
Monday, February 19, 2007 9:08 PM CST
Hi everyone,
So it’s been so late since the last update. Things have been a bit crazy with all of the snow days and vacation here!
Things are going well (though these kids really do need to be in school more often! LOL).
We went to the Museum of Science and Technology (MOST) today. The kids had a blast and ran for about 2 hours straight. I really wish we had an indoor play area for the kids to go and do gross motor activities without worrying about frostbite! Anyways, it was fun and tomorrow maybe off to see the movie Bridge to Taribethia (or something like that). Then on Wednesday we’re off to Rochester with Joshua and Nettie for appointments (more on that below). Then on Thursday we’re going to go to Ithaca to see the Science Museum there. It’s a great museum and only about an hour away and then maybe afterwards we’ll let the kids sled at Stewart Park if the temperature is somewhat tolerable.
As for the kids, well here it goes…
Nettie had her surgery last Wednesday and it was a complete success. I am still in awe of how tough this girl of mine is. She was up and out of bed only 2 hours after this big surgery and on our way home to beat a huge winter snow storm. She used pain meds for only 2 days and today wheeled herself all over the museum all by herself (did giver her some pain meds once home, but DANG. . . less than 5 days after surgery she spent 2 hours wheeling herself around). The surgery was deemed a success by the fact that she is now completely 100% even on top and she is what she calls “perky” now. You can see how much better her back is already feeling and her posture has improved in the past 3 days as well. This is such a big milestone and she is finally in the body she should be. She still pleaded with me to let them do a tummy tuck, but alas, I assured her, she would be bringing home whatever tummy she went into surgery with and not a smidgen less. LOL She goes on Wed. for her post-op visit and I am sure her surgeon is going to be shocked at how well she is doing. I know I am.
Joshua is also going to see his neurologist on Wednesday to determine what the next step is in controlling these stupid seizures. He continues to have a few each week despite the latest increase in meds. I am thinking she will do an adjustment of his Vagal Nerve Stimulator to see if that will help. At least that is what I am going to advocate for. Other than that though he is doing very, very well. Next week I have a meeting with his teachers to determine what his middle school program should be. I want a hybrid program that includes both academics as well as life skills but right now it is one or the other. Neither is appropriate for him. He will HATE school if I enroll him in an all academic program since he isn’t going to go for a Regents (actually can’t since he can’t take a foreign language and he can only read at a 3rd grade level!!!). But, he should also not be in a class that is teaching only cooking and laundry and basic life skills with no academics either. He needs a combination of both to really get out of school what he needs. Now, I just need to get the district to agree to create such a program! Wish me luck.
Trayvon is doing very well. He is healthy as a horse! He has a lot of questions about his birth mom lately and I gave him more information this past week than I have in the past. I am sure his counselor tomorrow is going to get an ear full of questions! LOL He feels sadness about not knowing who is biological mom is and felt comfortable enough to share his feelings with us about this. I was honored and saddened that I couldn’t take away this pain he has to process through. But, I was also shocked at a comment he made. I had told him that even though he is sad about his biological mom, I hope one day he will look back and be happy that she made the choice to let us adopt him and he will be happy that he was adopted. He looked back and said that if he wasn’t adopted then he wouldn’t have his cool, big brother that knows all about wrestling and likes to play with him. What a wonderful testimony to the relationship Tray and Joshua share!! I pray that this relationship will carry both boys through many difficult times life will throw at them as well as allow them to share all the great things both boys will be blessed with.
Marriela saw her neurodevelopment pediatrician and he upped her Ritalin one more dose. He feels that she just isn’t at a high enough dose to see the effects. BUT, at her current dose we are really teetering on the edge with her appetite and she really can’t afford to lose weight so we’ll have to balance the meds as best as we can. I am still praying that she gets to go to Longbranch Elementary next year rather than another school for the integrated kindergarten program (there are only 2 in the district). Other than that, she is doing great.
And last but not least, the Cody Bear. He is doing very well and is now officially 17 months old. Where in the world did the time go? I sit and watch him and can now see his little internal thought mechanisms actually “plotting” evil against his siblings!! LOL He races Marriela to whatever toy she is about to play with, he whacks the kids with whatever toy he has just to “play” with them and he runs from us whenever he knows we want to wash his face or change his diaper! He is still enjoying dog food and has decided that our bed is by far better than any other sleeping location in the entire house. Yet he is still the baby of the family and gets away with far more than he should. He also makes us laugh almost once an hour with his antics and Marriela and he would be lost without each other!
We know that they are still considering us for Sebastian (see last update for more info) so we now wait and see.
Till next time,
Take care and God bless,
Renee
Monday, February 5, 2007 9:12 AM CST
YEAHHHHHH COLTS!!!!!!
I have never had a team to cheer on during a Superbowl before. But since meeting Donovan and his amazing family and their love of the Colts, I have been cheering like crazy for them. AND THEY WON!! How cool is that. I can’t help but think how bittersweet that win must have been for his family. . . thrilled for their team, yet missing a key element of the “cheering team”, baby Donovan. Congrats Donovan,
I need to ask for some more prayers. A beautiful young lady from right here in CNY has just faced the worst news possible and now her family is trying to make her time here as pain free and happy as can be. PLEASE go by and visit, let them know that they are in your prayers and offer your support. I have faced this side of my children’s illness on a couple of different occasions yet we had always been told that there was still “some hope” for a complete recovery. We prepared for the worst and yet hoped for the best. Here is an example of preparing for the worst because it is here in the present, and facing that reality.
http://www.caringbridge.org/ny/smilesforshannon/
Ok, onto our crew,
Joshua is doing better with his seizures though we have continued to see some since the increase, so I don’t know what that will mean in terms of drug changes. He is actually at the doctors right now getting levels drawn to help guide them better. I am thinking more and more we need to go somewhere with some more resources and experience to get a second opinion (thinking NYU at this time). The most disturbing new information is that he has had a “significant erosion in cognitive skills” as per the school psychologist. Joshua is currently undergoing his tri-annual testing for entrance into middle school next year. The psychologist had called me to let me know she was sending home a form for me to sign and while she had me on the phone felt like she needed to give a bit of forewarning about how much he struggled with even the most simple of the test items. She was shocked and alarmed, and now, so am I. I honestly feel this is seizure induced and we NEED to get control of these seizures or we risk losing more and more of Joshua.
Otherwise, Joshua is doing very well and is happy and healthy (suppose it’s all relative LOL).
We met with Trayvon’s team at school last week and discussed their expectations, Tray’s strengths and needs. Initially you could read the frustration in the teacher’s voice and demeanor as she has been dealing with some very stubborn behaviors at school. However, after sharing some of Trayvon’s past medical history, his long list of reasons he struggles in school and the absolute amazing level of skills he is exhibiting despite this long list. He really is doing very well. He is now reading on a second grade level and his math is that of everyone else in the class, no modifications at ALL! That truly is amazing. I offered a list of suggestions to try in the classroom and asked the whole team to “rethink” their approach to teaching Tray. We know he can learn, now we need to find out the best way to do that, which means addressing his ADHD more aggressively and acknowledging that he may have some limitations to “how” he learns. Overall the meeting went very well and I truly believe they went away with a new appreciation of just how far he has come and how much farther he can go. YEAH TRAY! Health wise he is doing great!
Marriela is doing great as well. She has been dealing with a bad head cold and so far her lungs have handled it very, very well! No breathing treatments needed so far and she is being her same old spunky self!
Nettie has her surgery next week on the 13th. She is very happy to have it all over and looking forward to finally feeling “even” on both sides and having her clothes fit her better, etc. She is so funny. We haven’t made any decisions on her medications yet. . . Actually, I need to call them today to find out where we are going with that.
Cody is doing very well. He is finally completely over his pain from his circumcision and things down there are finally looking “normal”. We were getting nervous because he was still soooo swollen and bumpy from all of his sutures, but after seeing the surgeon we were assured he is healing very well. They told me that a circumcision is the easiest and quickest surgery they do, yet it is the most visually disturbing and longest healing one they do. The NP told me many other kids look like they’ve been through a “meat grinder” for up 6 weeks before they look like what you think they should look like. But it’s over now and we move forward. LOL His speech is still not progressing, but we are working on it and hopefully any time soon we’ll hear a word or two!
We never did hear from anyone on the twins out of Boston. I believe they think we have too many kids already and so they won’t consider us. Of course this is just speculation but they said they would call by the end of January so I think we’re out of the running.
On the same note, we did find a little boy right here in NY (Buffalo area) and sent our home study in. His name is Sebastian and his adorable. He is 13months old and does have some disabilities, but we feel strongly that God has us in his hands and that we are in the right place and time to take in a child like Sebastian and we feel that he would be a wonderful match. . . Now we have to see if the caseworkers feel the same way. Say a Prayer!!
Here’s his picture.
Until next time,
Take Care and God Bless,
Renee
Saturday, January 27, 2007 10:51 PM CST
Hi everyone,
For those who followed my friend Baby Donovan, you know that Heaven received it’s beautiful angel last Saturday. Though I never meet these amazing children, my heart shatters with each one’s passing. Maybe because I have Cody and being my youngest child I have great fears that one day we will be fighting for his life like we had to with Joshua and Annette and Trayvon. And these babies that fight so so hard and yet. . . Well, it is a brutal reminder of what can and does happen in many cases. I look at Cody and think (and yet can’t imagine) life without him at this age and yet that is exactly what Donovan’s parents are now doing. Heartbreaking.
As for our gang, all is well on the home front. Cody has made a full recovery from his surgery and the Ph probe was only slightly positive (although he only had it in for about 7 hours before he “lost” it - won’t go into details on that one LOL). So we will continue with his current reflux meds and assume now that he has asthma that gets worse at night. Joy. LOL
Joshua is now on a higher dose of Lamictal and his seizures have once again, responded very nicely. Now we have to go for labs next Friday to see if he is getting too much and is in the Toxic level since we were already at the higher end of levels with his previous dose. But he has had no side effects and very nice reduction in seizures, so I think it will all be ok in the end. Joshua saw urology on Thursday and we were informed that most likely the cause of the blood in his urine 2 months ago was a kidney stone. The reason for the new theory is because on ultrasound he as another one already formed and we may be going through the same thing again in the near future. Peter and Joshua now have water drinking contests to see if we can get the recommended daily 80oz of water into him to help prevent the stone from enlarging and to reduce the acidity of his urine. We will go back in 6 months and have a complete set of tests to determine if he continues to have grade 3 or higher reflux into his right kidney and if he does, he will have to have surgery to correct it in order to save further damage to that kidney. He also saw Endocrinology on Friday and it was determined that sometime next spring, we will stop his Lupron shots and allow puberty to begin. He will have another full dexa scan to assess his bone strength (his long bones are significantly osteopenic) and a hand x-ray to determine pre-pubertal skeletal age. Then let the growth spurt begin! LOL
Marriela has shocked us lately with her newly acquired knowledge in the area of letters and numbers! She can name almost all of the upper case alphabet and many of the lower case letters. I am shocked and pleased beyond words with her new skills. She has also mastered counting to 13 and can now copy an x, which is a HUGE accomplishment, as writing skills are by far the weakest area! We will be going to committee soon to discuss her placement in the fall and what support services she will need to be successful.
Tray weathered his cold beautifully and is doing just fine now. He is now over 80 pounds (and to think he was only 40 less than 2 years ago!) and growing like a weed. We haven’t heard back yet on his sleep study but we were told it can take upto a couple of weeks for the information to be processed. I am scheduling an appointment for him to be tested for Central Auditory Processing Disorder as I am convinced that this is the “processing” issue we see at home and they are witnessing in school. However, the school, Peter and I feel, are not being cognizant of his ADHD and potential CAPD and continue to punish him for unfinished work and lack of concentration at school. His teacher commented on his report card that Tray is not working to his potential and frequently requires someone to sit with him to get the work done even though he is capable of doing it himself. DUHHHH, that’s classic ADHD!! He tells me all the time that he can’t concentrate when the teacher is talking or they are doing calendar or there is another small group going on, at the same time he is suppose to be working independently. I know he can’t I have to deal with it every night at home doing homework and we only have 4 other kids, not 25!! I just don’t know what they’re thinking and we need to address the issue ASAP.
Nettie is doing great. The work on the bathroom has begun. We are having the entire thing done to better accommodate Nettie’s needs so she is safer and more independent in the bathroom. She is not yet convinced this is a better thing since she has such a sense of rigidness about everything and change in her book is AWFUL! But I have tried to assure her that in the end she will really like the new bathroom. LOL I know I will, there will be no more wallpaper with mallards on it! LOL
Well, that’s it for now.
To all those families in the midst of one crisis or another, you are in our thoughts and prayers.
Take Care and God Bless,
Renee
Saturday, January 27, 2007 10:48 PM CST
Hi everyone,
For those who followed my friend Baby Donovan, you know that Heaven received it’s beautiful angel last Saturday. Though I never meet these amazing children, my heart shatters with each one’s passing. Maybe because I have Cody and being my last “homegrown” child I have great fears that one day we will be fighting for his life like we had to with Joshua. And these babies that fight so so hard and yet. . . Well, it is a brutal reminder of what can and does happen in many cases. I look at Cody and think (and yet can’t imagine) life without him at this age and yet that is exactly what Donovan’s parents are now doing. Heartbreaking.
As for our gang, all is well on the home front. Cody has made a full recovery from his surgery and the Ph probe was only slightly positive (although he only had it in for about 7 hours before he “lost” it - won’t go into details on that one LOL). So we will continue with his current reflux meds and assume now that he has asthma that gets worse at night. Joy. LOL
Joshua is now on a higher dose of Lamictal and his seizures have once again, responded very nicely. Now we have to go for labs next Friday to see if he is getting too much and is in the Toxic level since we were already at the higher end of levels with his previous dose. But he has had no side effects and very nice reduction in seizures, so I think it will all be ok in the end. Joshua saw urology on Thursday and we were informed that most likely the cause of the blood in his urine 2 months ago was a kidney stone. The reason for the new theory is because on ultrasound he as another one already formed and we may be going through the same thing again in the near future. Peter and Joshua now have water drinking contests to see if we can get the recommended daily 80oz of water into him to help prevent the stone from enlarging and to reduce the acidity of his urine. We will go back in 6 months and have a complete set of tests to determine if he continues to have grade 3 or higher reflux into his right kidney and if he does, he will have to have surgery to correct it in order to save further damage to that kidney. He also saw Endocrinology on Friday and it was determined that sometime next spring, we will stop his Lupron shots and allow puberty to begin. He will have another full dexa scan to assess his bone strength (his long bones are significantly osteopenic) and a hand x-ray to determine pre-pubertal skeletal age. Then let the growth spurt begin! LOL
Marriela has shocked us lately with her newly acquired knowledge in the area of letters and numbers! She can name almost all of the upper case alphabet and many of the lower case letters. I am shocked and pleased beyond words with her new skills. She has also mastered counting to 13 and can now copy an x, which is a HUGE accomplishment, as writing skills are by far the weakest area! We will be going to committee soon to discuss her placement in the fall and what support services she will need to be successful.
Tray weathered his cold beautifully and is doing just fine now. He is now over 80 pounds (and to think he was only 40 less than 2 years ago!) and growing like a weed. We haven’t heard back yet on his sleep study but we were told it can take upto a couple of weeks for the information to be processed. I am scheduling an appointment for him to be tested for Central Auditory Processing Disorder as I am convinced that this is the “processing” issue we see at home and they are witnessing in school. However, the school, Peter and I feel, are not being cognizant of his ADHD and potential CAPD and continue to punish him for unfinished work and lack of concentration at school. His teacher commented on his report card that Tray is not working to his potential and frequently requires someone to sit with him to get the work done even though he is capable of doing it himself. DUHHHH, that’s classic ADHD!! He tells me all the time that he can’t concentrate when the teacher is talking or they are doing calendar or there is another small group going on, at the same time he is suppose to be working independently. I know he can’t I have to deal with it every night at home doing homework and we only have 4 other kids, not 25!! I just don’t know what they’re thinking and we need to address the issue ASAP.
Nettie is doing great. The work on the bathroom has begun. We are having the entire thing done to better accommodate Nettie’s needs so she is safer and more independent in the bathroom. She is not yet convinced this is a better thing since she has such a sense of rigidness about everything and change in her book is AWFUL! But I have tried to assure her that in the end she will really like the new bathroom. LOL I know I will, there will be no more wallpaper with mallards on it! LOL
Well, that’s it for now.
To all those families in the midst of one crisis or another, you are in our thoughts and prayers.
Take Care and God Bless,
Renee
Thursday, January 18, 2007 8:24 PM CST
Hi everyone,
Well, little Cody Bear had his surgery yesterday and he’s still kinda miserable. We were on the cusp of not having the surgery because on Monday (Martin Luther King Day) he began running a fever. Of course it was a holiday so no doctors open. First thing Tuesday I brought him to the pediatrician and she found two ears with infections so we started a strong antibiotic (I gave him two doses on Tuesday) and started nebulizers to see if we could get him over the hump and onto to surgery. Well, he woke up with a runny nose, but no fever and he seemed in good spirits so off to the hospital we went.
He did great. Had a very hard time coming out of anesthesia with lots of screaming and thrashing. Once they gave him some Tylenol with Codeine he totally relaxed. In the end he had ear tubes placed, an upper endoscopy (to check for reflux damage), a ph probe placed (which he didn’t mind at all), a circumcision and a hydrocel repair. The procedure causing him the greatest dismay is definitely the circumcision. We opted to do it only because he has a neurogenic bladder and may need several catheterizations to have it evaluated and treated. I didn’t want to worry about them having to force things down there and causing trauma to the area. Though I am not at all convinced that this is a good thing at all now that I see what looks like again. But too late to second guess ourselves now.
Overall he’s doing well considering his big day yesterday! I did just give him some more Tylenol with codeine because he was crying when he wet his diaper. I think that will be his last dose though, he’s been good since 7:00 this morning.
The other kids are doing ok.
Joshua continues to have seizures daily again. Though not happy, I’m not surprised. I do think the VNS has done a lot for him in the sense that it has allowed his current dose of medication to last much longer than previously. But it seems that the VNS isn’t going to allow him to actually reduce his doses as we had so hoped. I have a call into Rochester and today we’ll come up with a new game plan to address this latest breakthrough. He was also up with a bad “croupy” cough again last night. But after some benedryl to help him sleep he did finally fall asleep and slept well.
Tray has an awful head cold. He is having a hard time with it as it makes it much harder for him to breath and thus makes his heart work that much harder. He can’t have any cold medicines because they can result in arrhythmias in kids with severe cardiac disease. So he is stuck. I did give him some Benedryl last night as well to help dry him up, but after falling asleep for about an hour he woke up and vomited all over his room (YUUCCCKKK!). I think the post nasal drip just was to much and when he coughed, volia! He did go to school and so far no call so I guess he’s doing ok. LOL
Tray also had his sleep study last week. He did great with all crud they have to stick to you! However, apparently he slept on his belly most of the night and hardly snored at all. I was sleeping in the bed with him, but I was TIRED so I was out! LOL She said he did great and nothing alarming happened during the night. Sigh. He sounds like a growling animal all night here, and there, he hardly made a peep. Oh well.
Marriela is doing well and reminds us daily that she is going to be playing soccer, going to camp and going to kindergarten because she is getting bigger. She also has her boots and backpack on all day and now I have an idea why. Cody’s OT was here today and noted her strange dressing technique. She felt that Marriela likes the propioceptive (or weight) the backpack and boots give her body. We should look for beanbag like items to drape over her shoulders and buy the heaviest shoes we can find. Very interesting. Hey if it helps calm her, I’ll do it!!! LOL
Nettie is doing great. Looking forward to her upcoming surgery and hypnosis session. We are still struggling with what new meds to start her on. I feel like we are throwing away some very good meds just to change one that is causing her a mild side effect. The clinic’s feeling is that if you change one, you need to change them all so the virus doesn’t get smart to the old meds. However, my point is that we’re not changing her meds due to viral failure so why do we have to change them all??? I have yet to get an answer, but don’t you worry. . . You know I will!!
And that’s it for the gang. Still handing in paperwork for the updating of our home study so I’ll keep you informed of how it’s going.
Take Care and God Bless.
Renee
Oh yeah, PSPSPSPSPSPSPSPSPSPS
PLEASE GO SEE MY BABY DONOVAN, IT MAY BE YOUR LAST CHANCE BEFORE THE WEEKEND IS OVER.
Here is part of his latest update: (now you know why I have been pleading for people to go and visit)
Today January 16th 2005 marks the day that Donovan was admitted to Riley Children’s Hospital in Indianapolis, IN and was then diagnosed with a rare form of Infant Leukemia.
Today January 16th 2007 Dr. Kurztberg and her team have told us that Donovan’s cancer is spreading so fast despite the chemo and that it is very likely that he will not make it through the weekend.
I am angry, sad, afraid, heartbroken and in such despair. I know Donovan will be greated by his most special Angel friends and so I do not worry where he will go or how..I know it will be peaceful and God will be waiting..
http://www.caringbridge.org/in/babydonovan/
Saturday, January 13, 2007 7:15 PM CST
Hi everyone!
First and foremost I need to say YEAH COLTS!! Now I don't usually watch football and have never even seen a Colts game. But. . . little baby Donovan and his family are HUGE fans and for them, I have become a fan as well. I sat here and cheered with all my might so that they may have a joyous memory while fighting for dear life for their baby boy. PLEASE stop by and see them and cheer on those COLTS!!
http://www.caringbridge.org/in/babydonovan/
Ok.
All is well here. No news on the twins. We did however, finish our updated homestudy with the exception of our physicals. Since we don't know if this is really going to happen and the physicals are only good for 6 months, we're going to wait as long as possible before doing them to insure they are current. Here is a picture of them though.
I hope the picture is there. If not, you can go to www.mareinc.org and click on the online photolisting to the left and go down to the sibling sets. Their names are Andre and Adrian.
Note: Andre no longer has his ng tube and has a g-tube. Adriana eats and drinks from a bottle so has no feeding tubes at all. Their trachs are not permanent, but they babies do need to be older to have them out once their tracheas are larger and there is more room for air to move. Are they not the cutest little things!!
Ok,
As for the kids already here LOL. All are doing well.
Nettie saw the plastic surgeon and she is official set to have her surgery on February 13th. Happy Valentines day Baby! LOL She is thrilled. We also saw her Immunology doc and had quite the meeting. First, she got that new shot that protects girls from cervical cancer. She was not happy to say the least. Then we found out that she needed a PPD as well as an updated DPTa shot (the new one has a stronger version of the whooping cough vaccine since pertussis is back in full swing in our area). I was able to talk them into only doing the PPD and Girdasil shot then, and next visit will be the DPTa and the second Girdasil shot. We were also informed that she does NOT have any Sickle Cell disease and that her eye issues are medication related and thus we need to change her meds. This, for those who have dealt with HIV meds before, know is not an easy thing to do. She has been on soooo many of them and most come with such awful side effects we are not thrilled with idea of having to switch. So that is a work in progress. I jokinly asked if we could do some hypnosis on Nettie to get her to swallow pills and the NP said "Yes." I was very suprised to say the least!! So now Nettie has an appointment on 3/15 to have hypnosis with one of the doctors in the pulmonary clinic to teach her how to swallow her medications (and subsequently render her g-tube no longer needed!!). Nettie is thrilled with this idea so I think it has a very good chance of working! YEAH.
Ok, Joshua and Tray are both doing very well. Joshua did apparently have a large seizure in school, but as soon as they swiped his magnet it ceased so they didn't call us. I have only seen a couple of very small ones here and there but dissapointed to hear that he is still having daily ones at school. They seem to be right around the same time each day as well so we'll see what the doctor thinks next month.
Cody saw the ENT and dentist. Surgery is all set for next Wednesday for his various procedures. He had his first official cleaning of all 8 of his little teeth and the first signs of 3 little molars have made themselves known. It appears that there is a significant problem with the enamal formation on all of his teeth thus far and we will be facing many years of "proactive and reactive" treatment to keep them looking good. If they are any worse next visit (6 months) then she will consider filling some of them under anesthesia in the OR to insure he keeps them until he is suppose to lose them. What a bummer.
He has also started OT and Speech and loves both of his therapists! He is already beginning to model some of her activities and new sounds are starting to show!! YEAH!
Marriela is doing wonderful and has really started making some wonderful gains her letter recognition and numbers!!! She got a little "laptop" for Christmas and she can accurately match all of the letters when it asks for her to find them (of course there is a picture to look at as well, but still. . .this is awesome for her!!! She is also all signed up for indoor soccer, as is Tray and she can't wait to start!! Although, she is convinced that she will be playing soccer in her winter boots (she wears them all day inside and out - and today she even wore her coat all day for some unknown reason. Sometimes it is better not to ask too many questions for fear of the answer you may get LOL).
Tray and Marriela had a blast out in the snow on the one day we had it. I am so glad I took pictures! Tray is now convinced that if he wears his pj's inside out and backwards and throws and ice cube out the window, it will snow. He's done it twice and wouldn't you know, one day resulted in a snow day and the other a dusting (though it all melted just a few short hours later and it was my fault because I made him get dressed LOL).
I had a blast at my scrapbooking and the kids really enjoyed their time at Casye's Place. Tray and Joshua went bowling today with the OPTIMISTS bowling league for children in our district who recieve adaptive physical therapy. They had a great time. Joshua LOVES bowling and he's pretty darn good even without the bumpers!
Well that's it for now!
Take Care and God Bless,
Renee
Wednesday, January 3, 2007 8:35 PM CST
Hi everyone,
I hope everyone had a wonderful Happy New Year! We did. . . Actually, we were ALL asleep at midnight. How sad is that? I will remember it always though, as it was the last night I breastfed Cody. We made the decision to stop so that I could go away for my scrap booking and other events without worrying about pumping and such. He will be 16 months on the 9th so it’s not like I’m stopping to early, but he really liked nursing and I really liked nursing him. But alas, all good things must come to an end. . . Soooo, I will always remember 1/1/07 as a very painful night for me LOL!
All is going well.
Nettie saw the plastic surgeon today and has agreed that the other side needs to be evened out now to match the reduction she had done in May of last year. She is very, very excited to have it done so she will be equal on both sides for the first time in her life. This time, it won’t even require an overnight stay! She and I are both pleased with that. We’ll hear soon from his secretary on the date.
The rest are all doing well.
Tomorrow morning the adoption worker from our local agency, Dunbar, will be coming out to update our home study. However, I just found out that she will be leaving next Friday for good, so we will have to wait until a new one is hired before anything else can be done. Very frustrating. But she is going to get the paperwork started, the update completed and will make contact with Boston regarding the twins on our behalf before she leaves. So hopefully, there won’t be a lot to do for the new person until they actually decide if they want us or not as the family. But at least we’ll have a completely updated home study should another child come along that interests us.
Cody also sees his OT and speech therapist for the first time tomorrow. They both have their work cut out for them! LOL He refuses to speak and has a wonderfully low pain tolerance and loves doing anything that looks remotely dangerous!
Nettie also goes to the Immunology clinic tomorrow for her normal every 3 month appointment, but will also get the blood work done to be evaluated for Sickle Cell Anemia or some variant to see if that explains the retinal changes that she is having. Hopefully those results won’t take to long. I’m not a patient person, in case you couldn’t tell.
I am going away for the ENTIRE weekend for a wonderful scrap booking retreat! THANK YOU PETER!! I can’t wait. And, I don’t have to worry about pumping or pain, or leaking or any of that other stuff now! Heehehehehe. Sorry Cody. Peter got it easy though, it just happens that Joshua and Annette will also be spending the entire weekend at Casey’s Place as well so he only has the 3 little ones. How come when he goes away for weeks at a time, I have them all, the WHOLE time and when I go away. . . He only has 3?? It’s a conspiracy I tell you! LOL
Peter is in Elmira tonight with his father for his birthday. Happy Birthday Dad - 71 years old. You old man! LOL
Well, that’s it for now.
I’ll update when I have the results of the bloodwork.
Take Care and God Bless,
Renee
Tuesday, December 26, 2006 12:24 AM CST
Merry Christmas and Happy Holidays!!
We had a very nice and relaxing Christmas here. The kids all seemed very happy with their gifts and there were no major dissappointments that we could see. My dad hung out with us for the day and Peter's sister, Brenda and her family came by in the evening. The biggest issue for me. . . the mess that seems to permeate every single room in our house right now!!
We are off to Peter's dad's house tonight and tomorrow. We will then go to my Mom's house in Glens Falls on Friday to Saturday. It will be a busy week, but that's ok, I love visiting family.
The kids are all doing well. I do believe that Cody may have another ear infection brewing, but hopefully with some motrin and keeping him sitting up at night we will avoid needing more antibiotics. I will be very happy once he gets his ear tubes!
The rest of the gang is doing very, very well at this time. Knock on wood and Praise God.
Just wanted to check in and let you know all is well. I would like to ask you to stop in and see some friends who really need some prayers...
http://www.caringbridge.org/mi/mayam/
Maya is a beautiful girl who has had way more than her share of problems and on Christmas morning was rushed to the hospital and admitted to the PICU. Please pray that they figure out what is wrong and she gets back home fast.
http://www.caringbridge.org/in/babydonovan/
Baby Donovan is in the hospital awaiting surgery to place new central lines. He has relapsed again with his leukemia and they are working hard and praying like made for a miracle. The more people praying for this miracle, the better!!
Thank you for all of your support through the many years that I have been keeping this page. I started with My 2 Angels and now I am up to My 5 Angels!! LOL Like I said in the last update, maybe it will one day read My 7 Angels (if we could just find some more room in this house of ours!).
Well, that's it for now.
Take Care and God Bless,
Renee
Friday, December 22, 2006 8:55 AM CST
Can you believe that it is almost CHRISTMAS!!!! I am soooo behind the eight ball. Now, I know earlier I had reported that I was doing really good, but. . . it's funny how quickly that can change. LOL We have a babysitter coming today from 3 - 6:30pm to go out and finish up whatever we can. What doesn't get done, then. . . it doesn't get done. LOL
I'm also bummed, because we are going to have a green Christmas. There is no sign of snow in our future until late next week (and then it's just a flurry!). This works very well for the contractor putting in Nettie's ramp, as he should be able to do it all this winter vs. having to wait until the ground thaws in the spring. But I still wish we were having a white Christmas.
Cody saw the ped surgeon and he is definately going to fix his hydrocele at the same time as the other procedures. So, January 17th Cody will have his ear tubes put in, an upper endoscopy, a ph probe placed and his hydrocele repaired. It should be a fun recovery day. . . NOT! LOL He has been doing better, despite my initial reservations about the doctors diagnosis of asthma, since starting the nightly nebulizer treatments. He still gets very, very junky, but we haven't had one of those "up coughing until you puke" episodes for over a week now. I really thought it was all reflux, but now it is obviously complicated by an asthma component as well. Overall though he is doing well. We are suppose to be starting his speech and OT therapy soon, but haven't heard from the agencies yet.
Everyone else is doing well. I haven't heard back yet on Tray's sleep study but he's doing well, so I am not going to worry until after Christmas. :-)
What I am about to say may sound crazy. . . but we are thinking of adopting again. I am not done yet. I LOVE being a mom and since I had my tubes tied (a decision I regret every single day) we are looking at adoption again. Nothing solid, but there is a set of twins in Boston that really need a family (9 months old). They have some medical issues (but I am not going to go into details now) but we have faith that we can handle all of that and have a wonderful baby boy and baby girl to add to our family. But again, this is all a big, big maybe.
Other than that, all is well here.
We wish each and every one out there a wonderful, happy, and healthy Holiday Season and Happy New Year!
Renee
Thursday, December 14, 2006 9:09 AM CST
UPDATE:
Cody did great at his 15 month check up. The doctor is not convinced he is aspirating but instead thinks he may have asthma. So we now have to give him a nightly dose of Pulmicort as well as the reflux meds.
The GI team has decided to do an upper endoscopy as well as the Ph probe at the same time as his ear tubes. The pediatrician confirmed that his hydrocel is still very much there and gave her blessing for it to be repaired at the same time as the rest of the stuff. He also got his last 3 shots until he is five years old!! YEAH!!
Nettie got her flu shot and did fantastic.
Joshua became ill at school with a tummy ache and extreme fatigue. This happens whenever he is severely constipated. Daddy picked him up and he came home to try to poo. He was mildly successful but at this point things are so backed up, medical intervetion will be needed to really make any headway. He has his appointment on the 28th with GI out at Strong Memorial. Hopefully things won't get out of hand before then.
Tray saw the cardiologist. He had a wonderful visit and completely impressed the doctor with his amazing growth. We did talk about the noisy breathing and he was very concerned about the nightly snoring and decreased heart rates they noted on his last Holter Monitor. He informed me that it is devestating to the Fontan (Tray's type of cardiac repair) to have obstructive airway issues. It puts to much pressure on the lungs which in turn cause the heart to work to hard resulting in poorer and poorer heart function. So we agreed he needed a sleep study ASAP. I already called the pediatrician and she is setting it right up. The cardiologist also stated that he felt it would be fine to try and start Tray on some of the better known ADHD meds to address his school issues. He said there is now enough studies done with cardiac kids to show that most kids do just fine with the normal doses used in the pediactric population. YEAH!! I think this will really help Tray. I also shared this with the Ped and she is going to decide which one she wants us to start with.
Marriela is doing great. Moody, but great! LOL
That's it for now.
Renee
Hi everyone!
Well, we did it. We finally got a professional picture of all the kids since Cody was born. I know, I know, bad parents. How could you wait so long! Well, let me tell you, it was like running an Olympic Marathon trying to get some pictures!!! Marriela couldn't stay still for her life! Tray kept moving his hand ontop of one of the kids heads and look constipated every time he smiled. Joshua couldn't have looked any more uncomfortable if he tried. Half of the pictures he looks like he's about to leap out the picture. Cody mad an AWFUL mess with the candy cane "props" that I brought from home (note the eating of the cane in the picture), and he hated having to stay in one spot for ANY length of time! And then there was Nettie. My amazing, reliable, easy going, Nettie. She laid on the floor, sat in a chair, held whatever child we gave her, let Marriela sit on her and smiled beautifully for every single picture. God LOVE her!! But in the end, it was all worth it. We got some very nice photos even though I am not a fan of the blue background at all. But the kids look good, in my non-biased opinion.
All are doing well. It's me that is sick this time! I have an awful cold and I am positive Joshua gave it to me. Got to love the fact he likes to share everything with me. LOL
Cody is seeing the pediatric surgeon next Wednesday to see if his hydrocele needs to be repaired. Originally they told me they would evaluate it at 2 years old. BUT, he's already going to be put to sleep for his ear tubes and the GI stuff, so I feel, if it's still there and little chance of it resolving, go in and fix everything at one time! For those that don't know. . . a hydrocele is simply a bit of extra fluid that is leaking into the scrotal sac. It isn't a medical issue at a young age, but as they get older, the fluid can make it to crowed for the testes and can cause damage. So they fix it when they are very young with a simple and quick surgery. His surgery date has been set for 1/17/07 (can you believe 2007!!). Hopefully, they will all be able to do their various jobs on the same day. We'll see.
Joshua still has some signs of his lingering cold, but overall seems to have weathered the cold well.
Tray goes to see his cardiologist tomorrow. If they don't think his breathing is heart related (which I am not convinced it is) then I will ask for another referral to ENT to evaluate him further for his tonsils and adnoids as well. He is SUCH a noisy breather even when just sitting and doing something like homework and such. After running around, forget it! He sounds like an elephant breathing. Otherwise, I am not expecting any suprises tomorrow since he just had a full workup at the Transplant center in NYC.
Nettie gets her flu shot tomorrow as well and Cody has his 15 month well check-up at the pediatrician as well. Busy day!!
We also got the first check to pay the contractor to FINALLY put in our ramp for Nettie and get the bathroom remolded to accomodate her much better. I am sooo excited to have this work finally get done!
Well, that's it for now.
I pray everyone is trying to have a happy and healthy Holiday Season.
Renee
Friday, December 8, 2006 10:22 PM CST
Hi everyone,
Just a quick update to let you know how we're doing here. Cody's fever broke the very next day and then proceeded to have a day and a half of bad tummy problems but those seem to be almost gone. Today he had to go see the ENT for the "adnoid" problem as diagnosed by the GI doc. Well, he has perfectly nomral adnoids which DON'T need anyone messing with them. His tonsils are also perfect. However, his ears were actually quite infected even though we had no indication they were. So he's getting ear tubes. When they do the tubes, they are also going to put in his PH probe with the ENT's assistance and we think the GI docs will want to scope him as well to actually see what damage (if any) the reflux is doing. I hope to hear from everyone on Monday as to the scheduling of the whole thing.
Joshua came home from school today with a whopper case of the Croup. It's amazing that at 11 years old, he still gets such bad cases of croup! I just finished giving him a neb, cough medicine, a cup of Hot Cocoa (which usually helps a lot to reduce the spasms) and have his window cracked next to his bed. After 7 hours of non-stop coughing, he is finally sleeping quietly. Hopefully, this will last all night. But. . . this is the Curkendall house and NOTHING lasts all night!! Especially SLEEP! LOLOLOL
Nettie got a suprise call from Casey's Place. They had an opening for the weekend and so off she went. She loves going there! I was a bit disappointed though because the kids have a Christmas Party tomorrow for the ID/Immunology clinic. I was going to have them all dressed up for their annual Christmas picture, but now, Nettie won't be here for the picture. So I will make them dress up again Sunday night to their dismay and take it by the Christmas tree. LOL
Tray is doing very well for the most part. I've been watching him closely because he as begun to vomit a bit more again and when he runs, he's out of breath much sooner than he use to be. But it doesn't slow him down so I'll just keep an eye on him vs. calling the doctor. He had a pretty good week at school (no Chinese Buffet - see past update) but good enough to earn some nice video and cookie time.
Marriela is on her Ritalin now and, personally, I see no difference at all. I think tomorrow at the Christmas party might be a real test to see if it is working for her. Her normal behavior at a social outing like that is to RUN, RUN, RUN and seems to do well socially, but can't sit down for even a moment to do an activity or such. So maybe she'll get to enjoy some of the games and crafts finally! LOL Actually, maybe MOMMY will get to enjoy some of the activities rather than running around after her! LOL
We're decorated up for the Holiday's and most of the shopping is done. I actually feel a bit more relaxed this year. I think maybe I anticipated that one of the kids was going to need surgery (actually I assumed Cody was going to need something - just didn't know what) so I worked faster than I usually do.
Please say a prayer for Peter's dad who now has his own significant health issues. He is doing quite well since Peter's mom passed, but his kidneys are acting up, we found he has a big clot in his carotoid artery and his abdominal aorta needs to be repaired in a very large surgery in the near future. Peter works soooo hard to balance school, the kids health needs, and family time and careing for his Dad. I know how hard it must be for him to have to make choices all the time as to where he needs to share his time.
Well, that's it for now.
Take Care and God Bless,
Renee
Tuesday, December 5, 2006 8:56 AM CST
UPDATE
Well, it never fails, if I report good news with one of the kids they have to make me eat my words! LOL I woke up to go to the bathroom about 1:30 and peeked at Cody in the bed. He was looking at the tv which hadn’t been turned off yet (Daddy insists he was still watching it through closed eyelids and a very, very loud snore). I reached over to cuddle with him when I came back and was shocked at how hot he was! He had a temp of somewhere around 103 under his arm. So off to get the Motrin. His fever came down quickly but he became more and more agitated as the fever fell and was awake in a lot of discomfort from 1:30 - almost 5:00. He woke up again at 7:30 with another high fever but he was due for his Motrin right then anyways. He’s quiet but seems to be doing ok. Since Marriela ran a very high fever for 24 hours the day after Thanksgiving, we’re going to sit tight for the day and see how he does. I just worry that finally all of that crap in his lungs is starting to get infected. But let’s just wait and see.
Remember, GO VISIT THOSE SITES BELOW!!
Take Care and God Bless,
Renee
ORIGINAL UPDATE - DEC. 4
Hi everyone,
Well, we WILL have a white Christmas. Finally, it has begun to snow. I love it. It covers up all of the dirt and grim left behind by the dead leaves all over the ground, the brown Mums and the dried up flower stalks. It makes things look pretty again. I love it.
Things have been somewhat quiet here. Cody did go back to the doctor again because we were tired beyond tired listening to him choke and gasp for breath all night long. It had been going on for 3 long weeks and steadily the symptoms were/are appearing earlier and earlier in the day. So I made an appointment out of desperation with the Pediatrician. He did in fact here a bunch of crud in his lungs and he felt my frustration and desperation during the meeting (though Cody was up and being his usual wild child self!). The doc then called several other docs to consult with them to find out if we could do anything else. In the end Cody was started back on his Reglan 4 x a day along with his Prevacid 2 x a day. In addition, he now has an “emergent” appointment with the ENT this Friday to have his adnoids evaluated. I am sure he’s in for his first surgery in the next month or so. I happily report that the first day of restarting the Reglan was the first night he slept all the way through with out our usual coughing, gagging, choking, vomiting antics. It was wonderful!! It has been relatively quite for the past 3 more nights as well. It is now assumed that Cody is refluxing severely and aspirating the contents into his lungs. Why?? That has yet to be determined. He is still “gunky” in his lungs and he still has a very wet and deep cough after every bottle, nursing or sippy cup of fluid, but it’s not causing him to lose sleep at this time. After our appointment with the ENT we will then have to decide what direction we need to go. I’m just happy to be sleeping again! LOL
Marriela just saw the Neurodevelopmental Pediatrician today. I shared with him our results in using the Adderall and he was actually encouraged by the results (though I expressed our displeasure with the AWFUL “rebound” effect that happened each time the med wore off). So we are going to try just plain old Ritalin and give it three times a day, with the last dose only being half of the first two. This way it will last throughout the whole day but will “lighten” the rebound effect by only giving her half of the dose in the evening. Here’s praying it works! LOL
Joshua, Tray and Nettie are all doing well. Nothing too new with any of them right now. I did speak with Tray’s counselor he and Marriela have been seeing at the Salvation Army’s Hearts and Homes Adoption Services program. Apparently, without breeching his confidentiality, he has really found a safe place to open up and express some of his frustrations about being brown with peach parents and not having a brown brother, etc. It hurts my heart so much to hear that he is struggling with the feelings and doesn’t feel “safe” sharing them with Peter and I yet, but hopefully soon, with the counselor’s help, he can begin to let it out so we can help him see what a wonderful, wonderful little boy he is. We are so blessed to have him.
This Holiday season I ask that you PLEASE visit these families!
My heart is in a million tiny pieces tonight as this world lost an amazing little boy named Ellis. He has fought the fight no one should ever have had to fight. He is now at peace, but his grieving parents aren’t. Melissa and Sam need your support!
http://www.caringbridge.org/mn/ellis/
My heart is also breaking for the family of beautiful baby Donovan. He has now relapsed with Leukemia for the 5th time (and has had 2 bone marrow transplants). He is doing chemo but it is for life prolonging reasons, not for cure. He is precious. Please stop by and say hi and get to know this baby before he too, is gone from this world and you miss your chance.
http://www.caringbridge.org/in/babydonovan/
In my thoughts and prayers,
Renee
Monday, December 4, 2006 7:47 PM CST
Hi everyone,
Well, we WILL have a white Christmas. Finally, it has begun to snow. I love it. It covers up all of the dirt and grim left behind by the dead leaves all over the ground, the brown Mums and the dried up flower stalks. It makes things look pretty again. I love it.
Things have been somewhat quiet here. Cody did go back to the doctor again because we were tired beyond tired listening to him choke and gasp for breath all night long. It had been going on for 3 long weeks and steadily the symptoms were/are appearing earlier and earlier in the day. So I made an appointment out of desperation with the Pediatrician. He did in fact here a bunch of crud in his lungs and he felt my frustration and desperation during the meeting (though Cody was up and being his usual wild child self!). The doc then called several other docs to consult with them to find out if we could do anything else. In the end Cody was started back on his Reglan 4 x a day along with his Prevacid 2 x a day. In addition, he now has an “emergent” appointment with the ENT this Friday to have his adnoids evaluated. I am sure he’s in for his first surgery in the next month or so. I happily report that the first day of restarting the Reglan was the first night he slept all the way through with out our usual coughing, gagging, choking, vomiting antics. It was wonderful!! It has been relatively quite for the past 3 more nights as well. It is now assumed that Cody is refluxing severely and aspirating the contents into his lungs. Why?? That has yet to be determined. He is still “gunky” in his lungs and he still has a very wet and deep cough after every bottle, nursing or sippy cup of fluid, but it’s not causing him to lose sleep at this time. After our appointment with the ENT we will then have to decide what direction we need to go. I’m just happy to be sleeping again! LOL
Marriela just saw the Neurodevelopmental Pediatrician today. I shared with him our results in using the Adderall and he was actually encouraged by the results (though I expressed our displeasure with the AWFUL “rebound” effect that happened each time the med wore off). So we are going to try just plain old Ritalin and give it three times a day, with the last dose only being half of the first two. This way it will last throughout the whole day but will “lighten” the rebound effect by only giving her half of the dose in the evening. Here’s praying it works! LOL
Joshua, Tray and Nettie are all doing well. Nothing too new with any of them right now. I did speak with Tray’s counselor he and Marriela have been seeing at the Salvation Army’s Hearts and Homes Adoption Services program. Apparently, without breeching his confidentiality, he has really found a safe place to open up and express some of his frustrations about being brown with peach parents and not having a brown brother, etc. It hurts my heart so much to hear that he is struggling with the feelings and doesn’t feel “safe” sharing them with Peter and I yet, but hopefully soon, with the counselor’s help, he can begin to let it out so we can help him see what a wonderful, wonderful little boy he is. We are so blessed to have him.
This Holiday season I ask that you PLEASE visit these families!
My heart is in a million tiny pieces tonight as this world lost an amazing little boy named Ellis. He has fought the fight no one should ever have had to fight. He is now at peace, but his grieving parents aren’t. Melissa and Sam need your support!
http://www.caringbridge.org/mn/ellis/
My heart is also breaking for the family of beautiful baby Donovan. He has now relapsed with Leukemia for the 5th time (and has had 2 bone marrow transplants). He is doing chemo but it is for life prolonging reasons, not for cure. He is precious. Please stop by and say hi and get to know this baby before he too, is gone from this world and you miss your chance.
http://www.caringbridge.org/in/babydonovan/
In my thoughts and prayers,
Renee
Monday, November 27, 2006 2:33 PM CST
Monday, November 27, 2006 1:59 PM CST
Hi everyone!
Hope everyone had a relatively quiet and thankful Thanksgiving. Prayers go out to all those families who have suffered a loss and now must endure the Holidays without that persons beautiful spirit joining them in person.
All was nice here. We were able to talk Peter's dad into coming up with Peter's brother, Perry. Then my sister-in-law and her family along with Peter's other brother and his family plus my dad and our family we had a very busy and full house. (19 people total) 3 turkeys, 2 dishes of sweet potatos, 10 lb of mashed potatos, 5 bags of stuffing, 36 rolls, 3 loaves of bread (cranberry, banana, zucchini) and one huge green bean casserol and all walked away in just 27 mintues from the start of dinner to the end, full and content. LOL
The kids are doing well for the most part. I did have to take Cody into the GI doctor for a PH probe, but he wasn't able to get one. Apparently his adnoids are so big they are blocking his entire nasal passage making it impossible at this time to do the PH probe. However, the Dr. agreed that there is no doubt it is going to read severe reflux anyways so he wants to do a much stronger medication trial and for Cody to see an ENT for an evaluation of his tonsils and adnoids. Yep, another referral for the little man. He now sees as many doctors as the rest of the kids and he is my "healthy" one! LOL
Joshua gave himself a matching bruise on the right side of his face now. He had a big one on the left side when he slid on the floor and his foot stuck and he went face first into one of our dining room chairs. Today he was playing with one of those excersise stretchy things with the handles on each end and you pull on them to get a work out. Well he had it around the back of his nech and had hooked one handle onto his toe. He forgot how tight he had it pulled and slid his foot out of the handle the the thing snapped right back and hit him in the same spot on the other side of his face. He was in a lot of pain!! He never learns LOL.
Tray is doing well. He is doing much better in school since we started his daily star chart which comes home each day. He has the opportunity to earn upto 8 stars a day and he LOVES when he gets all 8 stars! If he can do that for 3 days in a row, he gets bookstore money, if he does a full week he gets to go to the Chinese Buffet for lunch. He has yet to enjoy a buffet, but I have no doubt it will happen!
Marriela had a very high fever the day after Thanksgiving. I had no idea she had a fever as she was playing so well and having a great day. But when she laid down with me to enjoy some cuddle time I couldn't believe how hot her back was. Her underarm temp was 103 degrees so she was almost 105 rectally!! I gave her some Motrin and she started to cool down. The fever broke in the middle of the night the next day and she has been fine since. Children are amazingly resilient!!
Nettie just got home from school. I am going to share her Christmas list with you, it is so cute (a bit hard to read, but use phonetics and you should be able to get most of it). As she gets older it gets harder and harder to meet her wishes money wise. But we usually do ok. She also has sent off a list to Santa so he will hopefully help with some of the list. LOL
"I want spongBob 1frist season.And I want shimmer Lips gloss and clear oxygen and Ialso want lock bock with a key I can but want less i what that in the book store in the village i want a cuver for my cell phone and i want that spred eye lash maskcara from red line and a little video camra i saw at the super walmart in acmilas and i want a make up bage and i want a big ear ring heart shapes with you name in the heart i want a slivr heart and a pen that talk and help with your it as diffenat langage one more thing on my list and new coat I show you that coat their more on my list so i havit thing and more"
The last sentence means that there is more for her list, but she didn't get to finish it because I was rushing her. LOL
Other than that, all is well here! Peter is down at his Dad's for the next 2 days to take him to the doctors. His Dad has a blood clot in his carotoid artery and small peices broke off and went to the blood vessles behind his eyes. Now he has severely diminished vision in one eye. We are worried about a full fledge stroke happening so we want immediate attention given to this and he has the VA so they tend to be very slow. As a result, Peter usually goes down to "negotiate" with the doctors and establish the next steps in care.
Take Care and God Bless,
Renee
Monday, November 27, 2006 1:59 PM CST
Hi everyone!
Hope everyone had a relatively quiet and thankful Thanksgiving. Prayers go out to all those families who have suffered a loss and now must endure the Holidays without that persons beautiful spirit joining them in person.
All was nice here. We were able to talk Peter's dad into coming up with Peter's brother, Perry. Then my sister-in-law and her family along with Peter's other brother and his family plus my dad and our family we had a very busy and full house. (19 people total) 3 turkeys, 2 dishes of sweet potatos, 10 lb of mashed potatos, 5 bags of stuffing, 36 rolls, 3 loaves of bread (cranberry, banana, zucchini) and one huge green bean casserol and all walked away in just 27 mintues from the start of dinner to the end, full and content. LOL
The kids are doing well for the most part. I did have to take Cody into the GI doctor for a PH probe, but he wasn't able to get one. Apparently his adnoids are so big they are blocking his entire nasal passage making it impossible at this time to do the PH probe. However, the Dr. agreed that there is no doubt it is going to read severe reflux anyways so he wants to do a much stronger medication trial and for Cody to see an ENT for an evaluation of his tonsils and adnoids. Yep, another referral for the little man. He now sees as many doctors as the rest of the kids and he is my "healthy" one! LOL
Joshua gave himself a matching bruise on the right side of his face now. He had a big one on the left side when he slid on the floor and his foot stuck and he went face first into one of our dining room chairs. Today he was playing with one of those excersise stretchy things with the handles on each end and you pull on them to get a work out. Well he had it around the back of his nech and had hooked one handle onto his toe. He forgot how tight he had it pulled and slid his foot out of the handle the the thing snapped right back and hit him in the same spot on the other side of his face. He was in a lot of pain!! He never learns LOL.
Tray is doing well. He is doing much better in school since we started his daily star chart which comes home each day. He has the opportunity to earn upto 8 stars a day and he LOVES when he gets all 8 stars! If he can do that for 3 days in a row, he gets bookstore money, if he does a full week he gets to go to the Chinese Buffet for lunch. He has yet to enjoy a buffet, but I have no doubt it will happen!
Marriela had a very high fever the day after Thanksgiving. I had no idea she had a fever as she was playing so well and having a great day. But when she laid down with me to enjoy some cuddle time I couldn't believe how hot her back was. Her underarm temp was 103 degrees so she was almost 105 rectally!! I gave her some Motrin and she started to cool down. The fever broke in the middle of the night the next day and she has been fine since. Children are amazingly resilient!!
Nettie just got home from school. I am going to share her Christmas list with you, it is so cute (a bit hard to read, but use phonetics and you should be able to get most of it). As she gets older it gets harder and harder to meet her wishes money wise. But we usually do ok. She also has sent off a list to Santa so he will hopefully help with some of the list. LOL
Other than that, all is well here! Peter is down at his Dad's for the next 2 days to take him to the doctors. His Dad has a blood clot in his carotoid artery and small peices broke off and went to the blood vessles behind his eyes. Now he has severely diminished vision in one eye. We are worried about a full fledge stroke happening so we want immediate attention given to this and he has the VA so they tend to be very slow. As a result, Peter usually goes down to "negotiate" with the doctors and establish the next steps in care.
Take Care and God Bless,
Renee
Tuesday, November 21, 2006 1:31 PM CST
Hi everyone,
It’s been a long and difficult week for many reasons, but mostly saying our final good-byes to Mom. Visitation was on Friday night and the Celebration of Life was on Saturday morning. It was difficult getting the kids ready, packed and everything needed to meet Peter down in Elmira when I was just so sad. But we did it and all went relatively smoothly.
The kids did well for the most part. Marriela and Cody, having NO IDEA what any of this meant, had a grand ole time moving from person to person getting attention and love. Tray spent a lot of time with his older cousins observing their reactions and trying to imitate what he saw. Joshua on the other hand had a difficult time when it came time to go into the room with Grandma. He became very fidgety and nervous. Once I told him it was ok to go to another room where the kids were all hanging out, then he started to relax a bit.
Nettie had a very strong reaction to going up and saying her good-byes. However, I have to tell you how sweet my baby is. As many of you may know, Nettie has always been told her “brown” mom has died. There is no real way to know one way or the other, but knowing how sick she was in the past and her history, it is probably the truth. Nettie has been keeping a journal the past year in which she has journaled her life, day by day. She drew a picture of her mom and taped it to the front and wrote lots of wonderful thoughts throughout the book. My little girl took that journal and put it in with Grandma so she could take it to Heaven with her and give it to her “brown” mom. I honestly can’t express how sad I am for Annette knowing how much she would have loved being able to see a photo of her mom or write her a letter and then actually get a response. But it overjoyed my heart at the same time that she has come to a place where she can find ways to communicate with her mom. Grandma was given a very important and big job and I am 100 percent sure she will complete the job and then some.
Peter is very tired as am I. It seems like these past few months have been very, very long months.
The kids are doing relatively well. Joshua had his x-ray and the results are in. . . “colon is very dilated with stool and no obstruction can be seen.” He now has an appointment with Strong Memorial GI in December (28th). Until then, we just keep giving him water and his Miralax and wait to see what they suggest.
Tray is doing well. He had his classmate birthday party on Sunday at the local children’s museum. It was a nice party and Tray had a very good time. The kids got to pet a Hedgehog and they loved crawling through the blow-up tunnels the museum has. I would recommend this party to anyone looking to plan one for their child! The party’s are finally over now for Tray’s birthday. LOL
Marriela is doing well.
Annette is doing well. Even her hip is feeling better.
Cody is having respiratory issues again. We think he is refluxing again, since his breathing is worst at night and nap time. I had him in the Urgent Care on Sunday for a chest x-ray so we could at least rule out pneumonia or bronchitis. It was all clear so he’s back on his Zantac but still needing nightly nebulizers to control the rapid breathing and wheezing. I am waiting to hear from his doctor and we’re going in to get a PH probe on Monday to find out if he is still refluxing on the meds and high severely.
Well, I am actually falling asleep right at the computer here so I am going to go now.
In my thoughts and prayers,
HAPPY THANKSGIVING!!!!! Drive safe and eat well.
Tuesday, November 21, 2006 1:30 PM CST
Hi everyone,
It’s been a long and difficult week for many reasons, but mostly saying our final good-byes to Mom. Visitation was on Friday night and the Celebration of Life was on Saturday morning. It was difficult getting the kids ready, packed and everything needed to meet Peter down in Elmira when I was just so sad. But we did it and all went relatively smoothly.
The kids did well for the most part. Marriela and Cody, having NO IDEA what any of this meant, had a grand ole time moving from person to person getting attention and love. Tray spent a lot of time with his older cousins observing their reactions and trying to imitate what he saw. Joshua on the other hand had a difficult time when it came time to go into the room with Grandma. He became very fidgety and nervous. Once I told him it was ok to go to another room where the kids were all hanging out, then he started to relax a bit.
Nettie had a very strong reaction to going up and saying her good-byes. However, I have to tell you how sweet my baby is. As many of you may know, Nettie has always been told her “brown” mom has died. There is no real way to know one way or the other, but knowing how sick she was in the past and her history, it is probably the truth. Nettie has been keeping a journal the past year in which she has journaled her life, day by day. She drew a picture of her mom and taped it to the front and wrote lots of wonderful thoughts throughout the book. My little girl took that journal and put it in with Grandma so she could take it to Heaven with her and give it to her “brown” mom. I honestly can’t express how sad I am for Annette knowing how much she would have loved being able to see a photo of her mom or write her a letter and then actually get a response. But it overjoyed my heart at the same time that she has come to a place where she can find ways to communicate with her mom. Grandma was given a very important and big job and I am 100 percent sure she will complete the job and then some.
Peter is very tired as am I. It seems like these past few months have been very, very long months.
The kids are doing relatively well. Joshua had his x-ray and the results are in. . . “colon is very dilated with stool and no obstruction can be seen.” He now has an appointment with Strong Memorial GI in December (28th). Until then, we just keep giving him water and his Miralax and wait to see what they suggest.
Tray is doing well. He had his classmate birthday party on Sunday at the local children’s museum. It was a nice party and Tray had a very good time. The kids got to pet a Hedgehog and they loved crawling through the blow-up tunnels the museum has. I would recommend this party to anyone looking to plan one for their child! The party’s are finally over now for Tray’s birthday. LOL
Marriela is doing well.
Annette is doing well. Even her hip is feeling better.
Cody is having respiratory issues again. We think he is refluxing again, since his breathing is worst at night and nap time. I had him in the Urgent Care on Sunday for a chest x-ray so we could at least rule out pneumonia or bronchitis. It was all clear so he’s back on his Zantac but still needing nightly nebulizers to control the rapid breathing and wheezing. I am waiting to hear from his doctor and we’re going in to get a PH probe on Monday to find out if he is still refluxing on the meds and high severely.
Well, I am actually falling asleep right at the computer here so I am going to go now.
In my thoughts and prayers,
Renee
Wednesday, November 15, 2006 1:01 PM CST
At about 11:30am Heaven recieved its newest angel, Mom. She went quietly and peacefully surrounded by all those who loved her so very much. Keep her family. . . our family . . . in your prayers as we now try to move onto a new life without her.
Love,
Renee
Tuesday, November 14, 2006 6:01 PM CST
Please pray for my wonderful and amazing mother-in-law as she passes from this life into the next. I had the unbelievable pleasure of going to see her yesterday with Cody. She was awake virtually the entire day and we had some nice talks, though she struggled with breathing after moving to another room to change. She told Peter that seeing Cody and I made her happy and that made me feel good and devestated at the same time. I wanted to stay forever. I didn't want to leave, but Peter needed to get back and so I had to return home. I will treasure our sitting together for the rest of my life. T
The nurse yesterday thought we had a couple of more weeks to "enjoy" with her, but did recommend that Morphine and Ativan be on hand from now on for her comfort.
Well, today she has been on the morphine and ativan all day and it is clear that her journey here on earth is coming to a close in the very near future.
I am soooo very proud to call this woman, Jean Curkendall, my mother. She dedicated her entire life to her family and made me feel like her daughter from the day we met. I am going to truly miss her and am heartbroken that I can't be there to offer her comfort in her final days. However, I take comfort that her wonderful children (including my amazing husband) and my father-in-law and her sister are there, caring, tending and comforting her all the time.
May God know what a wonderful woman has called to his home and I await the day we meet again. Until then, I reminded the kids that Grandma was now going to be able to see EVERYTHING they do, so they better make really good choices or she'll give it to them when they meet again! LOL
Peace be with you mom.
Love,
Renee
Wednesday, November 15, 2006 12:54 AM CST
At about 11:30am Heaven recieved its newest angel, Mom. She went quietly and peacefully surrounded by all yhose who loved her so very much. Keep her family. . . our family . . . in your prayers as we know try to move onto a new life without her.
Love,
Renee
Tuesday, November 14, 2006 6:01 PM CST
Please pray for my wonderful and amazing mother-in-law as she passes from this life into the next. I had the unbelievable pleasure of going to see her yesterday with Cody. She was awake virtually the entire day and we had some nice talks, though she struggled with breathing after moving to another room to change. She told Peter that seeing Cody and I made her happy and that made me feel good and devestated at the same time. I wanted to stay forever. I didn't want to leave, but Peter needed to get back and so I had to return home. I will treasure our sitting together for the rest of my life. T
The nurse yesterday thought we had a couple of more weeks to "enjoy" with her, but did recommend that Morphine and Ativan be on hand from now on for her comfort.
Well, today she has been on the morphine and ativan all day and it is clear that her journey here on earth is coming to a close in the very near future.
I am soooo very proud to call this woman, Jean Curkendall, my mother. She dedicated her entire life to her family and made me feel like her daughter from the day we met. I am going to truly miss her and am heartbroken that I can't be there to offer her comfort in her final days. However, I take comfort that her wonderful children (including my amazing husband) and my father-in-law and her sister are there, caring, tending and comforting her all the time.
May God know what a wonderful woman has called to his home and I await the day we meet again. Until then, I reminded the kids that Grandma was now going to be able to see EVERYTHING they do, so they better make really good choices or she'll give it to them when they meet again! LOL
Peace be with you mom.
Love,
Renee
Tuesday, November 14, 2006 6:08 PM CST
Tuesday, November 14, 2006 6:01 PM CST
Please pray for my wonderful and amazing mother-in-law as she passes from this life into the next. I had the unbelievable pleasure of going to see her yesterday with Cody. She was awake virtually the entire day and we had some nice talks, though she struggled with breathing after moving to another room to change. She told Peter that seeing Cody and I made her happy and that made me feel good and devestated at the same time. I wanted to stay forever. I didn't want to leave, but Peter needed to get back and so I had to return home. I will treasure our sitting together for the rest of my life. T
The nurse yesterday thought we had a couple of more weeks to "enjoy" with her, but did recommend that Morphine and Ativan be on hand from now on for her comfort.
Well, today she has been on the morphine and ativan all day and it is clear that her journey here on earth is coming to a close in the very near future.
I am soooo very proud to call this woman, Jean Curkendall, my mother. She dedicated her entire life to her family and made me feel like her daughter from the day we met. I am going to truly miss her and am heartbroken that I can't be there to offer her comfort in her final days. However, I take comfort that her wonderful children (including my amazing husband) and my father-in-law and her sister are there, caring, tending and comforting her all the time.
May God know what a wonderful woman has called to his home and I await the day we meet again. Until then, I reminded the kids that Grandma was now going to be able to see EVERYTHING they do, so they better make really good choices or she'll give it to them when they meet again! LOL
Peace be with you mom.
Love,
Renee
Saturday, November 11, 2006 10:25 AM CST
Hi everyone!
The week has been a busy one. Peter went down to be with his mom for a while on Thursday. He’ll be back tomorrow I think.
Let’s see . . . We need some updates here.
Cody - it was just a big hemorrhoid (he was having a very, very difficult time with the whole milk causing very big stools and constipation so he is back on his formula a bit longer). It is still hurting him, but not as much. His ears looked good at the visit so that is a relief.
He also had his early intervention evaluation and he qualified for speech therapy at home. His expressive language skills are still very behind (no babbling and such) but his cognitive and receptive language skills were all perfect. So we’ll get a bit of therapy to jump start that need to talk (I’ve actually been enjoying the “quietness” of Cody vs. the loudness of Marriela LOLOL). Other than that, he’s good to go.
Nettie - no word back from the ortho doc. We did run into a glitch with some of her meds though and I had to leave a “dirty” message on the machine at the GI office! Apparently we haven’t been to Peds GI since 9/04. I, however, was unaware that this was the case because the meds have been called in all along. The standard policy is you have to be seen once a year for prescriptions to be filled. Well, her last prescription was called in by the GI nurse practitioner on 4/06. We had used it all up and needed a new order called in. I left the message as per the instructions. I didn’t get a return call and the med wasn’t at the pharmacy. Soooo, I call back and this time I ask for the nurse. I am then told that Nettie hasn’t been seen for over 3 years!! NOT true. So they are unable to call in her meds. These drugs are used to control the diarehha that her other meds cause, so she needs them! They tell me, no meds until she is seen and the earliest appointment they have is 1/16/07!! Are you kidding me!? She then tells me that maybe the pediatrician would be willing to call them in just until she is seen by GI. I call the peds office and explain the issue. No response. The next day I am taking Cody in for his booty issue and she tells me that SHE spoke to the GI and they told her that there is no reason for Nettie to be on these meds and that she hasn’t had any labs drawn since ‘03. She then tells me that they don’t feel Nettie needs to be on these meds. Therefore, she won’t write the prescription either. I was livid. Why did they tell me to call the ped if they were going to go behind my back and tell them not to write the order anyways. So, long story short. . . Ohhhh wait, we’re already past that point. . . I left a long and not so nice message on the phone. They did call me back. The nurse informs me that she did NOT talk to the ped but instead had talked to the office nurse. They did NOT say that she shouldn’t be on the meds, but that they hadn’t been monitored in a long time with lab work and she needed some drawn. So I shared with them that Nettie has ALL of her labs done every 3 months through the ID clinic. Sure enough, when she looked them up in the computer, there they were, less than a month old and showed that she was having no problems with being on the meds. We got our meds. I’m still livid that our ped left me with the impression that it was ME doing something wrong and that she wasn’t going to be party to such, knowing full well that she hadn’t actually talked with them at all.
Ok, onto to someone else.
Joshua - we had to go back to the Pediatrician (yes, the very one I was mad at) and have him checked out for his post-ER visit. He was still full of poop when she felt his belly, but the good news was that he had no blood in his urine. So off to x-ray we were to have them check it more formally. That was fun, NOT. Five kids trailing behind me as we wander through the hospital signing him in and up to x-ray.
Oh yea, I almost forgot, just to make my day more interesting, I thought I would ask if the flu shots were in yet. You guessed it, yep they were. So the 4 kids I had with me (I left Nettie home for the ped trip) got their flu shots as well. Fun, fun, fun, fun. Actually, Marriela is the only one that cried and she stopped after about 30 seconds. Tray didn’t even have a chance because I let him play on the exam table and then when the nurse came in I cuddled him in close and pulled up his shirt and in the blink of an eye, it was all over before he even had a chance to really protest the whole thing! I do have to say a HUGE thanks to that nurse! She was awesome.
Ok, so what else. I think that’s it for now. Nettie is at Casey’s Place for the weekend. She went out with her SU girls yesterday to see the Santa Clause 3 movie. I then get a call that the girls car is not starting and she needs me to pick her up. So I pack up all the kids, her stuff for the weekend and off we go to take her up to Casey’s Place. Then this morning, out of nowhere, Cody puked all over my bed. I don’t know why, he seemed just fine afterwards, but now I have to take them all with me to the laundromat to clean the comforter and the sheets (our washer isn’t big enough) and then off to the grocery store again. Boy do these kids eat A LOT!!
Well, now I think that’s it.
Take Care and God Bless,
Renee
Tuesday, September 26, 2006 8:17 AM CDT
Nettie's wheelchair was getting rammed by these adorable little goats!
Cody watching his big sister, Marriela, hamming it up.
Trayvon was showing us is big muscles after finishing a dinner he considered "less than good." LOL
Marriela was having a great time at the park playing hide and seek with me, she didn't mind getting found as you can see!
This is Joshua's face after opening his new gameboy for his birthday. He was very happy.
Hi everyone,
First things first. . .
HAPPY BIRTHDAY TRAYVON!!!!
It's almost impossible to believe my little "man" is 8 years old already. He has such a spunk about him that everyone who meets him just adores him and his presonality. He chose Spaghetti Warehouse for his birthday dinner (not suprising, since Joshua had his there as well, and Tray REALLY wanted them to sing to him too! LOL). We had a very nice time other than Cody being completey and utterly anti-highchair at this age. We have lots of left overs because everyone overindulges on the wonderful bread they bring out before the meal (we go through like 7 - 8 loaves before dinner even comes. . . I kid you not.). But that's ok, easy breakfasts and lunches for tomorrow.
I remember updating Trayvon's 4th birthday from NYC after having a visit with the cardiology team and neurologist. It was so full of medical stuff that his birthday was overshadowed by his ongoing, persistant health problems. I'm happy to say, that today that isn't the case for him. See update below for more info. LOL
However. . . the rest of the gang is another story. Let's see who to start with.
Cody (youngest first). He's going back to the doctors tomorrow for an all new problem. Peter, while changing his diaper this morning, discovered a "bump" by his "poo hole" (sorry so graphic there). I took a look and, yes, it was different, but not in a too bad way. Well later that day I was changing him and the bump is more pronounced and much redder and clearly doesn't belong there. Last night he was clearly in distress while sleeping, you tell by his breathing and restless sleep. I gave him motrin and about 1/2 hour later settled right down. He is also refluxing again out of nowhere. So we're going back to see what this new development is. I am concerned it may be an abcess and the antibiotic he is on for his ears are keeping it at bay, but not actually treating it. Hopefully I am wrong. Sometimes it's no fun being right all the time. LOL
Marriela - is feeling better. However, I don't think the Adderall is really doing anything for her at this time. I will be calling the doctor to try something different as well as getting some Meletonine to try at night as per her pediatrician.
Joshua - We tried the cleaning out protocol (see below for details - if you actually feel like you need them LOL). It wasn't nearly as successful as I had thought it would be. He had one bout of "diarreah" the next morning, but otherwise nothing of signifigance. Now mind you, he had the equivalent of 12 days worth of daily doses in just 6 hours! We were told that he would be "pooping his brains out once it starts to work." Well, he still has all of his brains... as well as a lot of unwanted poo. So we see the pediatrician on Friday and if she still feels that he is very full, she may admit him for a formal cleaning out. He will HATE it but it is for his own well being and the safety of his bladder. He also had a pretty big seizure at the restaurant tonight and we didn't have his magnet with him. It was his first one in a long time, but it was rather long and quite intense for about 45 seconds. Very sad to watch, since he was fully aware of it. But the good news is, he didn't have any more and that's the norm so the VNS is doing something! Tomorrow he goes back to have it turned up for the last time to the full voltage, hopefully this will head off any more.
Nettie - usually I have nothing to report about my beautiful teen. But she has had some real hip problems the last couple of months and they sort of culminated yesterday when she fell getting into the house afterschool (yes, it was I who was helping her in... bad mommmy). Her leg has been giving out and goes out to the side in a sort of split and this just kills the hip she had surgically repaired, since it has little play. So I am making an appointment with the ortho doc to have the hip x-rayed to be sure it is still in place. If it isn't and that is the reason her leg is always giving out, then she will need surgery again to fix it (big, painful surgery that we don't want!).
I was sitting at the table at the restaurant tonight after Joshua had his seizure. I was looking at my beautiful children and wondering what the rest of the people in the restaurant would think if they knew all that I just wrote above. They have so many things going on, yet there they were, laughing, playing, eating, and having fun as if they had no worries in the world. I guess that means Peter and I do a pretty good job of doing the worrying for them.
Thanks for the visits and the prayers.
In our thoughts,
Renee
Hi everyone,
Well, we're back from NY and it was a great visit!! We are beeper free for the time being. It was a very informative meeting with the transplant doctor. She explained that, though he has some concerning problems, they are all treatable at this time without transplant. In addition, Tray's particular combination of cardiac problems will make for an extremely complicated and risky transplant surgery with a chance of death in the 1st year as high as 30 percent!!! That is far to high for Peter and I to think that it is better to list him now vs. later. But she said that his echo showed good heart function and he clinically looks very good at this time. He may need to have his diuretics adjusted again because he is having daily eye swelling again, but she said that is normal for kids with his defects and his surgeries. Tray was WONDERFUL for the whole visit. I was very proud of him.
While I was in NYC, Peter was home with a hot 13 month old and a miserable 4 year old. So he was off to the doctors as well where it was discovered that Marriela's ears were infected and she was still wheezing. . . onto an antibiotic she goes. Then the doctor looked at Cody's ears and listened to his lungs and said that he was WAY WORSE than Marriela. So he too was started on an antibiotic, just a stronger one as well as three times a day nebulizer treatments.
THEN. . . after arriving home with Tray, Joshua tells me that he is peeing blood. Soooo, just out of curiosity I go in and check out what he's talking about and sure enough, there is a bowl full of red stuff. Ughhhh. This is a new one for us. LOL So the next morning I tell him to give me a sample (bye bye one of the kids sippy cups). When he hands it to me it looks like cranberry juice and has definate clots in it. So I call the peditrician's office and he tells me to take him to the ER. I don't believe him. Oh yeah, I also sent Joshua to school because other than red pee, he's absolutely fine. Then I call the urologist and they finally tell me, 2 hours later, to take him to the ER. Sooooo, I pick up my otherwise healthy child and go to the ER were he earns himself a set of labs, an IV, an ultrasound of his kidneys and bladder and a nice CT of his pelvis and kidneys. In the end, Joshua is severely, severely constipated (a long ongoing issue for my poor baby) which is pushing on the back of his bladder causing him to lose sensation to the need to go. In addition, his creatinine level was very, very high meaning he was severely dehydrated resulting in extremely concentrated urine. This concentrated urine was actually caustic to his bladder resulting in blood and clots. We are now home on a Miralax routine as well as A LOT more water. He was already looking a lot better today (pee wise that is) than yesterday. This weekend we are going to do a "cleaning out" protocol which should help him go better soon.
Ok, and now we are to today, where I find that Cody is NOT getting better with the nebulizers so he and Marriela are going to go on steroids for the next 5 days. Please, please, please say a prayer for us with TWO children on steroids and one getting "cleaned out"! LOLOLOLOL It should be a fun weekend all the way around. NOT!!! LOL
Other than that, all is well here.
Oh yeah, one more thing. Peter's mom is now on Hospice. The scans were not what we were hoping for so all treatment has stopped and she is home and we're working hard on improving her quality of life as well as comfort. This was a difficult pill to swallow, but we knew it was coming sometime. Again, say a prayer for our family as we live through this.
In my thoughts and prayers,
Renee
Tuesday, September 19, 2006 6:31 PM CDT
Hi everyone,
Well, we made some choices for Joshua and thought I’d just let you in on our plan of action. Tomorrow I am heading out to Rochester with him to turn on the Vagal Nerve Stimulator, two weeks earlier than planned. We also increased his Keppra despite the fact that we think it is causing him mood swings. We don’t have any other choice.
Today, 4 of the 5 kids woke up sick. Marriela and Cody have the nasty runny nose (Cody has a mild cough as well). Tray has a mild stuffy nose a mild cough. And then there is my poor Joshua. I had to go get him from school because he couldn’t stop coughing for more than 2 minutes. Literally, no more than 2 minutes!! It’s been non-stop since he woke up this morning and he’s still coughing away upstairs, even after meds, a nebulizer and a hot shower. I don’t know what else to do for him. Sigh.
Other than that, all is well. I’ll update to let you know how the visit tomorrow goes.
PS. Joshua’s birthday is only two days away. He’ll be 11 years old. Where does the time goooooooo???
Take Care and God Bless,
Renee
September 16, 2006
Hi everyone!
Sorry for the long delays between updates.
Joshua had now had a shower since his surgery (and boy was that a much needed shower!!) and all is healing very well. Unfortunately, his seizures are continuing to increase so we have to turn on the device sooner than later and pray that it has the positive impact we need it to have. In the mean time, we have increased one of his meds to try and get a handle on the seizures. Unfortunately, this med is notorious for causing behavioral changes (ie. Anger, moodiness, etc.) and we are seeing some of that already. But we aren’t sure if it is the med or just so many changes at school all at once that is the source of distress for Joshua. But our choices at this time are extremely limited in terms of getting his seizures under control. So please pray that this vagal nerve stimulator has a quick and positive impact on his seizures.
Tray has adjusted well for the most part to his new second grade class. However, he did inform us yesterday that he “had a bad day.” He thought the teacher called us, but we never got the call. So he was let off easy. LOL
Marriela was given one more medication last night to see if we can induce sleep at a reasonable hour. However, like all the rest, it was a horrible experiment gone wrong. She was OFF THE WALL!! YIKES! We gave her the Atarax at 6:00pm and at 9:00 she was still ripping all of her blankets off of her bed, screaming at us and throwing toys around her room, all while crying uncontrollably. Not fun for anyone. I do have to say though, she finally fell asleep and stayed asleep for the night (doubtful it was the drug, more likely, she just exhausted herself BECAUSE of the drug). Sigh.
Nettie is doing great with her new English/Reading class. I have high hopes for this program! She also met her new Syracuse University students. Nettie is a part of program that connects 2 Special Ed students with Developmentally Disabled teenagers each semester, to get them out into the community and to improve social skills. We’ve been doing this for almost 2.5 years now and Nettie always has a great time with her girls.
Cody had his well check up and all went well for the most part. I should preface this with a report on the day before. Now, remember, Cody is his own worst enemy! Three days ago, Marriela and Cody were “feeding” each other cereal out of a bowl. I use heavy ceramic bowls because the lightweight plastic ones spill too easily. Well, one of the kids picked up and dropped the bowl and it broke. I cleaned it all up and vacuumed to be sure it was all gone. The next morning, Cody found a small chunk of the bowl and managed to cut his finger badly. The Urgent Care Center wanted us to stitch it, but I didn’t think it was necessary to cause him so much distress just to prevent a small scar on his middle finger tip. Well, I got scolded at the Pediatrician’s office for my decision (even though I still think it was a good one LOL). They reapplied some steri-stipes to his finger and redressed it. Then he had to have his one year blood work as well as THREE vaccinations! He handled it all like a trooper and fell asleep as soon as he hit his car seat.
Next weekend I am going to get to go to another overnight scrap booking event! I am sooo excited. Peter has been very, very busy with his school work. Other than that, nothing new happening here.
Take Care and God Bless,
Renee
***********************************************************
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Saturday, September 16, 2006 12:56 AM CDT
Hi everyone!
Sorry for the long delays between updates.
Joshua had now had a shower since his surgery (and boy was that a much needed shower!!) and all is healing very well. Unfortunately, his seizures are continuing to increase so we have to turn on the device sooner than later and pray that it has the positive impact we need it to have. In the mean time, we have increased one of his meds to try and get a handle on the seizures. Unfortunately, this med is notorious for causing behavioral changes (ie. Anger, moodiness, etc.) and we are seeing some of that already. But we aren’t sure if it is the med or just so many changes at school all at once that is the source of distress for Joshua. But our choices at this time are extremely limited in terms of getting his seizures under control. So please pray that this vagal nerve stimulator has a quick and positive impact on his seizures.
Tray has adjusted well for the most part to his new second grade class. However, he did inform us yesterday that he “had a bad day.” He thought the teacher called us, but we never got the call. So he was let off easy. LOL
Marriela was given one more medication last night to see if we can induce sleep at a reasonable hour. However, like all the rest, it was a horrible experiment gone wrong. She was OFF THE WALL!! YIKES! We gave her the Atarax at 6:00pm and at 9:00 she was still ripping all of her blankets off of her bed, screaming at us and throwing toys around her room, all while crying uncontrollably. Not fun for anyone. I do have to say though, she finally fell asleep and stayed asleep for the night (doubtful it was the drug, more likely, she just exhausted herself BECAUSE of the drug). Sigh.
Nettie is doing great with her new English/Reading class. I have high hopes for this program! She also met her new Syracuse University students. Nettie is a part of program that connects 2 Special Ed students with Developmentally Disabled teenagers each semester, to get them out into the community and to improve social skills. We’ve been doing this for almost 2.5 years now and Nettie always has a great time with her girls.
Cody had his well check up and all went well for the most part. I should preface this with a report on the day before. Now, remember, Cody is his own worst enemy! Three days ago, Marriela and Cody were “feeding” each other cereal out of a bowl. I use heavy ceramic bowls because the lightweight plastic ones spill too easily. Well, one of the kids picked up and dropped the bowl and it broke. I cleaned it all up and vacuumed to be sure it was all gone. The next morning, Cody found a small chunk of the bowl and managed to cut his finger badly. The Urgent Care Center wanted us to stitch it, but I didn’t think it was necessary to cause him so much distress just to prevent a small scar on his middle finger tip. Well, I got scolded at the Pediatrician’s office for my decision (even though I still think it was a good one LOL). They reapplied some steri-stipes to his finger and redressed it. Then he had to have his one year blood work as well as THREE vaccinations! He handled it all like a trooper and fell asleep as soon as he hit his car seat.
Next weekend I am going to get to go to another overnight scrap booking event! I am sooo excited. Peter has been very, very busy with his school work. Other than that, nothing new happening here.
Take Care and God Bless,
Renee
***********************************************************
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Sunday, September 10, 2006 7:39 PM CDT
HAPPY 1st BIRTHDAY CODY!!!!
It is virtually impossible for me to believe that my baby is already a year old. Where did the time go??? We had a very nice little party for him. He was a bit overwhelmed at the singing of the Happy Birthday, didn’t like the cake on his hands and the rocking horse we got him (it’s mouth moves as he sings a song - very cute. . . To us) freaked my poor baby out. LOL But over all it was a wonderful day.
Joshua had his surgery and it went very well. Though it filled me with sadness to have to go through it alone with him (Peter had to stay home because we didn’t have anyone to watch the kids and it was Marriela’s first day of school). What saddens Peter and I the most, is that no matter how much he has to go through, Joshua never says “No” or “Why”. Not just “Why me?” He doesn’t even ask us what the tests or surgeries or doctor visits or the blood tests are for. He just does them without complaint. Not a single argument or rebellion, ever. How sad is that, that by 10 years old, he just doesn’t know the difference anymore. He has been doing this since he was 2 years old and can’t remember life without surgeries or medicines or doctors or tests. I wish I could take away all of the crap our kids go through. But Tray will at least protest (and very loudly at that) over lab work and immunizations. Nettie will question EVERYTHING you do to her and often resist if it’s something new or unfamiliar to her. Marriela is afraid of the doctors now (sad, yet much more normal a response than Joshua has) and Cody doesn’t know the difference yet. But Joshua. . . He never says anything.
This time as I went into the operating suite with him to see him off to sleep (something I have ALWAYS done every time he is sedated) and he had the nitrous oxide mask placed on his face he drifted off to a semi-conscious sleep. Yet he persisted in pulling his hands away from the doctor as he tried to start the IV in one of Joshua’s poor hands with virtually no reliable veins left (they’ve been left severely weakened by the chemo years ago). He was insistant on grabbing for my hand. So in the end I held my baby’s hand as the doctor tried several times to insert an IV to give the “sleepy medicine” to put him out once and for all. . . His blood was dripping all over my hands and the saline was soaking the bed as I held my baby’s hand tight for more torture. It truly broke my heart and maybe, a little bit of my spirit too this time. I leaned over and kissed his beautiful neck, that until now has remained scar free (unlike his head, stomach, chest arms and back). And I left quietly with tears running down my face, knowing my baby was going to wake up soon, and have two new scars and he didn’t even understand why or question our decision to do it.
Now we wait. On October 3rd the implant gets turned on and we wait to see if it works. I don’t know if it will take one month, 6 months, a year. . . Till we have any idea if it will work, but I hope it does sooner than later. Today at the party he had a bigger than usual seizure while sitting on Peter’s lap. He suddenly fell straight back in a very stiff posture and his eyes were twitching away. It happened twice. He denied it was a seizure and said he was “just relaxing” in order to save face in front of all the relatives watching, so we went along with it. Knowing all to well what it really was. The scary thing is that if he hadn’t been on Peter’s lap, he would have landed on the floor and really hurt himself. Please pray that we will see positive results from this Vagal Nerve Simulator soon.
Everyone else is doing well. Tray was very upset on Wednesday at school, as it slowly dawned him half way through the day that his brother wasn’t going to be coming home on the bus with him. He fell apart and the school nurse (God love her) called me at the hospital to give the me the heads up. I let him talk to Joshua and I reassured him that we would be home the next day and he settled right down. He’s my very sensitive child.
Marriela, Cody and Nettie are all doing great. Nettie is enjoying her new English class and Marriela loves school as usual.
That’s all for now folks. . .
Take Care and God Bless,
Renee
********************************************************
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Wednesday, September 6, 2006 5:06 PM CDT
Hi everyone!
Today was the first day of school and like everything else in our house, involved a little bit of excitement. LOL Nettie was the first to leave and off she went, looking beautiful. She had a great first day and seemed to enjoy a new reading program she is going to be a part of this year to hopefully prepare her to take her GED in several years! How exciting is that!! With a GED she can get virtually any job she wants and will be afforded special training due to her disabilities so the door will open up much wider than if she only had her IEP diploma. So this is a wonderful opportunity for her.
Joshua and Tray were off next. Except. . . That right before the bus came, Tray announce he had a headache. Then he said his belly didn’t feel good. . . Classic migraine symptoms for him. I ran him in the house and popped two Advil in his mouth with a big swig of Pepsi in the hopes of catching it early allowing him to still enjoy his day. Well, 15 minutes after arriving at school, he vomited all over the brand new school rug and cringed with head pain in the nurses office until daddy went to get him. 2 hours later he was fine and I took his little butt right back to school for the last 2 hours of the school day. Joshua seems to have had a great day. He came home with homework already and sat right down to do it. His assignment was to write down 10 goals for the school year. Here is a sample of what Joshua wrote:
1. I will watch t.v. at 7:00.
2. I will watch t.v. at bedtime.
3. I will eat breakfast and watch t.v.
4. I will watch Kicking and Screaming on t.v.
See a trend here???? What in the world are the teachers going to think of us and our parenting skills allowing our child to watch all that t.v? Not to mention these are his life goals for 6th grade. At least he has a concrete attainable list of accomplishments he hopes to do (no doubt he’ll achieve his goal by the second day of school LOL). Sighhhhhhhh. Kids, gotta love them.
Marriela got to go visit her class today with mommy. She had a great time and is looking forward to her bus coming again. So is mommy! LOL
Ok, onto the medical stuff.
Joshua is having his surgery tomorrow at Strong Memorial in Rochester. He is having the Vagal Nerve Simulator implanted. It should only involve an overnight stay so that’s all I’m packing for (hoping not to jinx it!). I’m even leaving Cody at home!! I’ll update when were home and all is settled.
I also forgot to mention that Tray had to have 3 of his 7 cavities filled without any novacain or sedation (due to heart issues). The high doses of Lasix he has to take have taken a big toll on his little teeth and they are all developing “pits” which have advanced to cavities in multiple small areas. He was such a trooper and didn’t even cry when the work was being done. I was very, very proud.
Cody likewise has some unexplained “pitting” on all of his new baby teeth. The dentist said usually this is seen as a result of medications the mother took when pregnant. But the meds I took for my severe vomiting and nausea aren’t listed as meds that do this to the teeth. So alas, yet another thing for Peter to blame my side of the family for. Just kidding. But if they progress like Tray’s have, then he will have to have small porceline fillings done on all of his baby teeth.
Well, that’s it for us for now.
Until the next time!
Renee
********************************************************
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Thursday, August 31, 2006 7:38 PM CDT
Hi everyoen,
Well, another busy week.
Nettie is home from her camp and let's just say, she learned A LOT!! YIKES! That's what happens when it's just "teens" though LOL. But she had a great time and really wants to go back next year. I am happy that she felt so comfortable outside of her usual group at camp so she has come a long way in terms of making new friends. Yeah for Nettie!
Joshua saw his neurologist today and we had to up his medication even though I didn't want to. He is having many more seizures (3- 5 a day now) and we can't wait for the Vagal Nerve Stimulator to start working (since he doesn't even have it yet. . . minor technicality LOL). I haven't heard yet if next week is a go or not so it may not be for another week. I guess they'll find it in their schedule to let me know sooner or later. (yes, sarcasm there.)
Otherwise, Joshua is doing great. It is amazing how much energy he has had lately! He runs everywhere and is constantly SINGING!! Not well, but still doing it and loudly at that! His neurologist couldn't get over how much more eye contact Joshua made and how much "brighter" his faced looked since his admission back in February. What a difference since taking away the Neurontin.
Cody has since recovered from his atrocious past couple of weeks and though still bumped and bruised is finally starting to look more like a little boy than a pro wrestler. Hopefully I'll get a picture uploaded here soon to show you his poor face after falling on the concrete patio. His MRI was COMPLETELY NORMAL!!! YEAH!!! So he doesn't have a tethered cord but he also doesn't have an explanation for the neurogenic bladder (his bowels seem fine now). Now he has to see the urologist for a diagnosis and hopefully that will be the last of the medical crap for Cody for a while. His first birthday is already here (the 9th) can you believe that!!!??? I can't. I'm still in shock I have a baby and now he's already one. It is amazing how time flies sometimes.
Tray is doing fantastic. Everyone that is meeting him the past couple of months that hasn't seen him in a while is absolutely shocked at how much bigger he is!! It cracks me up. LOL He feels great and looks great. Sad about starting second grade "again" but I think he'll adjust quickly once the year gets going.
Marriela is doing well also. She likewise is now starting to get taller. Though she has lost weight, I know see how much more height she has gained and I'm not nearly as worried as I was before. Some of the shorts that use to be down to her below her knees at the beginning of summer are now to her mid thigh, that's a lot of growth! She is going to be a beautiful girl when she's older! Anxiously awaiting her appointment in October with the developmental pediatrician to hopefully start her on some meds to help her cope with the daily trials and tribulations of life. She has such a hard time getting through the day without many, many tantrums and crying spells over little things like. . . her shoe isn't on yet, or her Barney tape is over, or her cereal is all gone (because she ate it) or sometimes it's as simple as "someone is looking at me!". It's frustrating for her and I trying to calm her and deal with her never ending percieved crisises all day long. Peter is sooooooo good with her and has ooodles of patience. God knew he would be the perfect daddy for her! AS for me, I count to ten many times a day. LOL
I also wanted to let you know that Peter's mom's scans weren't the greatest so she is moving onto another type of chemo as a pallative care. She looks good but is very tired. Please say a prayer for Peter and mom and dad as they work their way through this time.
Be sure to read below about my Relay for Life Team! I really want to do well in honor of all of those little heros out there that are working so hard just survive when they should be living their childhood!
Take Care and God Bless,
Renee
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Wednesday, August 23, 2006 1:54 PM CDT
Precious Baby Max has earned his angel wings. Though I have never met this baby, my heart is broken. He is the same age as Cody and now he is no more. Oh yes, he ultimately won his battle and God has him in his warm embrace. . . but his parents. . . I just can't begin to imagine the pain. Please visit his site and support his family. Also, Baby Donovan really, really needs support as well. He's about to face his fourth relapse, and he just turned one. The odds are not great, but his cuteness and determination are!
Renee
Wednesday, August 23, 2006 10:04 AM CDT
Hi everyone,
I am leaving the update below for a while. The families I listed continue to need HUGE prayers. As you read this, another family is planning the burial services of their 10 month old who died from relapsed leukemia. I really don’t go to these sites to be depressed, life is just that way sometimes. All of these kids had been doing great and their updates focused on the same things we do. Family activities, daily trials and tribulations with a bit of medical stuff thrown in. But cancer doesn’t care if your doing well, it can always come back. And for many of the kids I follow via the caring bridge sites, it has. I don’t stop following them or offering their families support simply because things are bad now (as many people have suggested - “Renee, you really need to stop reading all of that stuff, it just depresses you. . .”). You’re damn right it depresses me!! It should, and it has moved me to want to do something. I have always been in some type of crisis mode and never felt that life was calm enough to attempt fund raising, but our life will always be like that and I find myself needing to do something NOW! Feel free to read the info below if your interested in helping.
Ok, what’s happening here in our neck of the woods?
Joshua saw the neurosurgeon the other day and he is a go for the Vagal Nerve Stimulator surgery. He originally was planning for the 29th, which blew me away, so I asked him for a bit more time to prepare. It will most likely happen on the 7th (the day after school starts). It is only an overnight hospital stay and the surgery itself is only 1.5 hours long. He will not even be that sore, but can’t shower for two weeks. That will be a bonus in Joshua’s book! LOL The statistics state that 80% of the people with the VNS have a 40% reduction in seizure activity. That is a 40% reduction in the need to increase his meds as far as I am concerned and that is a big plus. In addition, it will allow us to continue with his current meds for a longer period of time vs. having to increase and increase until the med has to be changed out. The side effects far outweigh the potential benefits at this time so I am looking forward to having it done.
Joshua had a great time at camp. He learned archery, did a rock climbing wall (which he proclaims to be “not very good at”), canoed and swam every day. He seemed to have a good time, but did have several seizures. He says he wants to go back next year, so that’s a good sign.
Nettie is off to camp TLC down by NYC. Peter took her down and picked up Trayvon from his the same day. We thought Tray had the Taj Mahal of camps. . . Peter thinks Nettie’s is probably 100% better!! LOL He couldn’t believe that they call this place a “camp”! It is much more like a 4 or 5 star resort. I am sure she is having a blast.
Tray had a great time at camp and told his dad he wanted to stay longer. He did have a “bully” in his cabin which picked on Tray quite a bit. Tray says he told the counselors, but that they didn’t believe him that “Kenny” was picking on him. I wasn’t happy to hear that and will be calling the camp today to speak with them. Overall though he had a great time and can’t wait until next year.
Marriela is doing great. She keeps asking to go to camp herself with all of her siblings leaving all summer long. She misses being at school. I have to admit, I thought that her not being at school for the morning would be more difficult since she doesn’t always wake up in a great mood, BUT it’s been really nice having her here to cuddle with in the mornings. She did see the pediatrician due to her weight. She has lost 4 pounds in the past 3 months and we are not sure why. I personally think it is because she just can’t stop moving and every calorie she takes in, she burns off, plus some. We have to go back in another week for a recheck and then we decide what to do from there.
Cody. Let’s just say that this week has been a tough one for the little guy. First he had his MRI on Monday (which was a surprise in and of itself, since I thought it was suppose to be Thursday!). He did great, but after they put him to sleep under the general anesthesia, they found that the machine wasn’t working. But since he was already asleep, they decided to continue with the sedation and wait for the machine to be fixed rather than wake him up. Soooo, 1 ½ hours later they are ready to start his 1 ½ - 2 hour scan. All in all he was asleep for over 3 hours and woke up quite well considering. After he left the hospital I ran right home to pick up Joshua to take out to Rochester to see the neurosurgeon. When we arrived home Cody had begun to run a fever so I gave him some Motrin. We arrived in Rochester only to find that he is hotter than ever and nowhere to go get some more meds. So off to the doctors, where we find that he won’t be in for another hour and a half. So we wait, with another family, as they lock up the place and offer us some food out of their staff fridge. Finally we see the doc for our 30 minute visit that actually only lasted 15 mintues. Cody is starting to cool down and we stop at BK for some quick dinner before heading home. The next day, Cody seems a bit better, but his nose is running like crazy. While playing outside with me and Marriela, he falls. HARD. Onto his face, from the back of a toy car, onto the cement patio. He looks awful!! He had just gotten rid of his last scabs on his head only to replace them with many more and now an awful looking nose to boot. My poooooor baby!
Just waiting on the scan results now. Otherwise, Cody is doing great.
Peter is in Elmira with his mom today as we await the results of her scans she had earlier in the week. These scans will guide them in the next step of treatment for her lung cancer. Please pray that all looks good.
In my thoughts and prayers,
Renee
Sunday, August 20, 2006 7:42 AM CDT
I am hoping that you don't find this update to blatant or upsetting, but I am sad beyond words. Just read today's updates on the sites below to know why. Max isn't even a year old (the same age as Cody), Donovan isn't two yet and My God, how much can a baby take, and then there is Cody. Read the whole thing and you will realize just what some of these families have ultimately had to face.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=maxjordan
http://www.caringbridge.org/in/babydonovan/
http://www3.caringbridge.org/va/cody/
I don't know what our journal would have looked like if we had started our web site when Joshua was diagnosed. I can tell you, sitting there watching him suffer, struggle and survive in the PICU for those first 3 weeks was a life changing event. Watching him have to learn to hold his head up again, how to walk, how to eat, and then face round after round of chemo as it kicked his body's ass from here to Timbuktu was heart wrenching. Yet, Joshua is here, 8 years later, he is here and for that I am thankful beyond anything a simple word could express. That is not the case for so many other precious children.
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Take care and God Bless,
Renee
Wednesday, August 23, 2006 10:04 AM CDT
Hi everyone,
I am leaving the update below for a while. The families I listed continue to need HUGE prayers. As you read this, another family is planning the burial services of their 10 month old who died from relapsed leukemia. I really don’t go to these sites to be depressed, life is just that way sometimes. All of these kids had been doing great and their updates focused on the same things we do. Family activities, daily trials and tribulations with a bit of medical stuff thrown in. But cancer doesn’t care if your doing well, it can always come back. And for many of the kids I follow via the caring bridge sites, it has. I don’t stop following them or offering their families support simply because things are bad now (as many people have suggested - “Renee, you really need to stop reading all of that stuff, it just depresses you. . .”). You’re damn right it depresses me!! It should, and it has moved me to want to do something. I have always been in some type of crisis mode and never felt that life was calm enough to attempt fund raising, but our life will always be like that and I find myself needing to do something NOW! Feel free to read the info below if your interested in helping.
Ok, what’s happening here in our neck of the woods?
Joshua saw the neurosurgeon the other day and he is a go for the Vagal Nerve Stimulator surgery. He originally was planning for the 29th, which blew me away, so I asked him for a bit more time to prepare. It will most likely happen on the 7th (the day after school starts). It is only an overnight hospital stay and the surgery itself is only 1.5 hours long. He will not even be that sore, but can’t shower for two weeks. That will be a bonus in Joshua’s book! LOL The statistics state that 80% of the people with the VNS have a 40% reduction in seizure activity. That is a 40% reduction in the need to increase his meds as far as I am concerned and that is a big plus. In addition, it will allow us to continue with his current meds for a longer period of time vs. having to increase and increase until the med has to be changed out. The side effects far outweigh the potential benefits at this time so I am looking forward to having it done.
Joshua had a great time at camp. He learned archery, did a rock climbing wall (which he proclaims to be “not very good at”), canoed and swam every day. He seemed to have a good time, but did have several seizures. He says he wants to go back next year, so that’s a good sign.
Nettie is off to camp TLC down by NYC. Peter took her down and picked up Trayvon from his the same day. We thought Tray had the Taj Mahal of camps. . . Peter thinks Nettie’s is probably 100% better!! LOL He couldn’t believe that they call this place a “camp”! It is much more like a 4 or 5 star resort. I am sure she is having a blast.
Tray had a great time at camp and told his dad he wanted to stay longer. He did have a “bully” in his cabin which picked on Tray quite a bit. Tray says he told the counselors, but that they didn’t believe him that “Kenny” was picking on him. I wasn’t happy to hear that and will be calling the camp today to speak with them. Overall though he had a great time and can’t wait until next year.
Marriela is doing great. She keeps asking to go to camp herself with all of her siblings leaving all summer long. She misses being at school. I have to admit, I thought that her not being at school for the morning would be more difficult since she doesn’t always wake up in a great mood, BUT it’s been really nice having her here to cuddle with in the mornings. She did see the pediatrician due to her weight. She has lost 4 pounds in the past 3 months and we are not sure why. I personally think it is because she just can’t stop moving and every calorie she takes in, she burns off, plus some. We have to go back in another week for a recheck and then we decide what to do from there.
Cody. Let’s just say that this week has been a tough one for the little guy. First he had his MRI on Monday (which was a surprise in and of itself, since I thought it was suppose to be Thursday!). He did great, but after they put him to sleep under the general anesthesia, they found that the machine wasn’t working. But since he was already asleep, they decided to continue with the sedation and wait for the machine to be fixed rather than wake him up. Soooo, 1 ½ hours later they are ready to start his 1 ½ - 2 hour scan. All in all he was asleep for over 3 hours and woke up quite well considering. After he left the hospital I ran right home to pick up Joshua to take out to Rochester to see the neurosurgeon. When we arrived home Cody had begun to run a fever so I gave him some Motrin. We arrived in Rochester only to find that he is hotter than ever and nowhere to go get some more meds. So off to the doctors, where we find that he won’t be in for another hour and a half. So we wait, with another family, as they lock up the place and offer us some food out of their staff fridge. Finally we see the doc for our 30 minute visit that actually only lasted 15 mintues. Cody is starting to cool down and we stop at BK for some quick dinner before heading home. The next day, Cody seems a bit better, but his nose is running like crazy. While playing outside with me and Marriela, he falls. HARD. Onto his face, from the back of a toy car, onto the cement patio. He looks awful!! He had just gotten rid of his last scabs on his head only to replace them with many more and now an awful looking nose to boot. My poooooor baby!
Just waiting on the scan results now. Otherwise, Cody is doing great.
Peter is in Elmira with his mom today as we await the results of her scans she had earlier in the week. These scans will guide them in the next step of treatment for her lung cancer. Please pray that all looks good.
In my thoughts and prayers,
Renee
Sunday, August 20, 2006 7:42 AM CDT
I am hoping that you don't find this update to blatant or upsetting, but I am sad beyond words. Just read today's updates on the sites below to know why. Max isn't even a year old (the same age as Cody), Donovan isn't two yet and My God, how much can a baby take, and then there is Cody. Read the whole thing and you will realize just what some of these families have ultimately had to face.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=maxjordan
http://www.caringbridge.org/in/babydonovan/
http://www3.caringbridge.org/va/cody/
I don't know what our journal would have looked like if we had started our web site when Joshua was diagnosed. I can tell you, sitting there watching him suffer, struggle and survive in the PICU for those first 3 weeks was a life changing event. Watching him have to learn to hold his head up again, how to walk, how to eat, and then face round after round of chemo as it kicked his body's ass from here to Timbuktu was heart wrenching. Yet, Joshua is here, 8 years later, he is here and for that I am thankful beyond anything a simple word could express. That is not the case for so many other precious children.
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Take care and God Bless,
Renee
Sunday, August 20, 2006 7:42 AM CDT
I am hoping that you don't find this update to blatant or upsetting, but I am sad beyond words. Just read today's updates on the sites below to know why. Max isn't even a year old (the same age as Cody), Donovan isn't two yet and My God, how much can a baby take, and then there is Cody. Read the whole thing and you will realize just what some of these families have ultimately had to face.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=maxjordan
http://www.caringbridge.org/in/babydonovan/
http://www3.caringbridge.org/va/cody/
I don't know what our journal would have looked like if we had started our web site when Joshua was diagnosed. I can tell you, sitting there watching him suffer, struggle and survive in the PICU for those first 3 weeks was a life changing event. Watching him have to learn to hold his head up again, how to walk, how to eat, and then face round after round of chemo as it kicked his body's ass from here to Timbuktu was heart wrenching. Yet, Joshua is here, 8 years later, he is here and for that I am thankful beyond anything a simple word could express. That is not the case for so many other precious children.
Many people who know our family and our children, know that there are MANY causes that we could fight for. AIDS, Heart Defects, Developmental Disabilities, Epilepsy, Primary Immune Deficiencies, Hearing Impairments, Asthma, Prematurity, etc, etc. But NONE of these medical issues are killing as many children a day as Pediatric Cancer. And those that are lucky enough to survive do so many times with severe side effects.
So I have started a Relay for Life team called
Team Little Heros.
This team, I hope will consist of many families of children who have or are fighting cancer as well as their friends and families. I hope to have each FAMILY raise just $50 each with an overall goal of collecting $1000. I realize this seems like so little when the issue is soooo BIG. But I need to start somewhere. Crying over all of these children is getting them nowhere and I can’t do that anymore.
Please, I ask that you stop by and visit Team Little Heros and become a member of our team. Let’s try to do something, anything to stem this awful disease.
Here is the link to Team Little Heros: (just cut and paste it into your browser)
http://www.acsevents.org/faf/r.asp?t=4&i=141834&u=141834-143458302&e=717850208
Take care and God Bless,
Renee
Wednesday, August 16, 2006 1:22 PM CDT
Hi everyone!
The house is sooo quiet! Trayvon and Joshua are off at their respective camps. The whole family dropped off Joshua at his camp out near Buffalo, NY. It is held at a YMCA camp facility and is very nice and neatly kept. He has 2 counselors in his cabin and 5 cabin mates. This is a camp specifically for children with a seizure disorder. Marriela however, was not a fan of the 4 hour car ride (2+ hours each way) so we decided not to take her the following morning when we drove Trayvon down to NYC for his camp. Thank goodness, for it took us 4 hours each way!!! Tray's camp is at a conference center in Warwick, NY and it is the Taj Mahal of camps! He has a climate controlled cabin. There are 3 counselors and 4 campers in his cabin. Each cabin has a shower and toilet (poor Joshua has an outhouse for close-by toileting and the showers are down by the pool, YIKES!). So we left Trayvon enjoying his home cooked meal prepared by a hired chef. LOL We did hear from Joshua's camp and he is doing very well. I did forget to pack a few things and we had to send an overnight package to him. I didn't realize that he was going to need bath towels (Double H Camp provides all linens and bedding) and it was cold at 12pm so I sent some more warm clothes. It cost me $42.00 to send that boy a sweatshirt, a blanket, 2 bath towels and some medicine!! The post office has quite the racket going there.
Marriela had a very nice birthday party last Saturday. She was sooo excited about her cake and presents. I will be sure to post new pictures as soon as I have them.
We now have new windows and doors on the entire house and it looks fantastic! We also have a new hot water tank as well. I just finished staining the areas that were exposed when removing the very ancient old door. People keep commenting on the fact that we have a door that locks now! LOL
We are about to go to the annual Familycapped picinic at the Green Lakes State Park. It's always a good time and this year Nettie gets to go. Usually she and Joshua were at camp at this time. So it's nice to have her along with us.
We also have a car!! But you will never believe me if I tell you that our big van, yes the one that's fixed, is broken again! So we are back down to only one car, but it's better than none! LOL
Prayers go out to all of the little ones suffering. Please know that there are many, many children that need your prayers.
Take Care and God Bless,
Renee
Monday, August 7, 2006 7:24 AM CDT
Happy Birthday Marriela, Happy Birthday To You!!
Marriela is 4 years old today. 3 years ago today, Peter and I sat in a foster home in Boston, MA looking at this tiny 12 pound baby with 2 little buck teeth on her first birthday. She couldn’t sit, stand, speak or barely eat. She was for all intent and purposes, still a small infant. Well, to look at her today it is hard for us to imagine that same little girl!!! LOL She never STOPS speaking or running or jumping (still can’t sit though, but for entirely different reasons hehehehehe). She’s still small for her age but no longer is constantly stuggling to breath, and her tummy difficulties are all but gone. She is a vibrant, beautiful addition to our family. Without Marriela, there would be a lot less excitement and we have never been a family that did well with boredom.
So Marriela, Happy Birthday Baby! We all love you very much.
The rest of the kids are doing great as well. Cody turns 11 months in 2 days (again, almost impossible to believe that our baby is almost 1 year old). His MRI is next week, but I honestly believe all will be fine since he is now a very adept and avid walker. He took his first steps about 1 week after turning 10 months and he hasn’t looked back since. He is actually mad now when he tries to run and his legs won’t cooperate with him! LOL
Nettie, Tray and Joshua are all preparing for one more week at their various camps. Joshua leaves Sunday for his first year at Camp EAGR, a camp for children with seizure disorders. Tray leaves on Monday for Camp Hope With Heart, a camp for children with severe cardiac disorders and Nettie leaves on the 26th for Camp TLC a camp specifically for 14 - 19 year olds dealing with her diagnosis. They are all very excited and nervous, as these are all brand new camps for the kids and us. I am sure that they will all have a fantastic time though.
Medically, nothing to report, at all. Isn’t that amazing here! LOL We’ve been very busy.
We have my nephew, Justin, staying with us for another week (a total of 2). We took the kids to the Drive-in to see Monster House, much more fun for the older kids than the two little ones. We’ve been to 2 fishing derbys (one was at a fishing hatchery with Joshua’s summer school program called Shenanigans). The other one was an all day fishing excursion on the lake (we live one block from a large lake) with the 4 boys Daddy, Mommy and Grandpa. There were 135 tagged bass in the lake, and we went out with full intentions of catching one of those bass, (with our little Scooby Do fishing poles) but in the end had to settle for several sunfish and a perch. All in all though the boys learned how to cast a rod, handle hooks and how to “catch” a fish. By the end of Saturday even Trayvon was loving sitting and fishing with his little pole and had learned to not only catch worms, but how to hook them and even how to hold a fish! I had a great time! (I love fishing!)
As for the cars, we have one back. The big van is back in business and my white minivan should be back in the next day or two with a brand new head gasket. I miss my van so much! LOL
So until next time,
Take Care and God Bless,
Renee
Wednesday, July 26, 2006 6:10 PM CDT
Hi everyone!
Thank you to Celeste, Kaylee and Philip for your help in teaching me how to resize my pictures for the front page. It was sooooo simple once I had the step by step instructions. LOL
Ohhhhhh what a long, expensive week it has been for cars in this house and we still don’t have a working vehicle. L Let’s see, where I left off last, we had just replaced the alternator in the big van and thought we were set to go. . . Not quite. I went out to go somewhere and almost fell getting into the van. I thought Peter had spilled something on the step and then realized that there was OIL all over the driveway. Yep, the oilpan (a pan that holds oil I am supposing) has rusted completely through. SOOO that car was out of the question until it is replaced. To go to Lake George we needed a more reliable car. So Peter drove down to Elmira and switched out the Cadillac (for those who are newbies, it’s a very old Cadillac AKA the “Pimp Mobile”) with his parents much newer Subaru Outback. We took that to my mothers and had a wonderful time!!!
The next day Peter took back his parents car and picked up the Cadillac (which had a faulty radiator but ran with lots of coolant in the reserve tank) and got about ¼ of the way home when the radiator went completely cup-put-ty. Sooo he had to have that one towed (for another $180 home while we work on getting a new radiator for that one). And the minivan (my baby) is still sitting idle with its poor blown head gasket. Sigh. But we’re doing great otherwise! LOL
Joshua and Nettie had a wonderful week at camp! I was soooo happy not to get any calls this year about Joshua. He was seizure free and the counselors who knew him from previous years, all raved at how much more alert and interactive he was this year. That is definitely a direct result of removing the Neurontin from his drugs. Nettie officially “graduated” from camp and can now attend their Alumni weekends instead of the full week.
Joshua saw the endocinologist today for his 6 month follow-up. He is doing very well. The doctor was pleased to see how well the Lupron injections are working and his puberty is completely at a stand still right now - which was our goal. He has a perscription for some bloodwork and a hand x-ray to check his bone age to be sure we are still in the “normal” range and not falling to far behind. Other than that he is set to go for another 6 months. YEAH!
We also talked to the doctor about Trayvon. Tray continues to gain weight. It is sooo hard to believe that we almost put in a feeding tube and now we’re worried because he is gaining too much weight! He is upto 67 pounds. December of 2005 he was 50 pounds even. That’s almost 20 pounds in seven months! He has gained some height as well, but not in the same proportion. So the endocrinologist would like to see him, but needs his growth charts from the past couple of years to see where he falls over time vs. the most recent past few months. So we’ll get that done soon.
Tray has also complained the past few days that his heart is “too fast” and he seems to be trying to catch his breath once in a while. His heart rate is higher for him (120 - 150) BUT he actually said he felt better at the 150 than he did at the 120, so I think I need to wait a bit and see if this is just a heat related thing or something more serious.
Marriela is doing well and is almost 4 years old!! She is having a hard time with her excema again (anytime there is a lot of heat or humidity). In addition, her lips are sooo cracked it hurts her to eat sometimes. She is still having trouble getting to sleep at night but seems to be improving a bit over time.
Cody is now walking. He can go across the room (looks very drunk doing it, but gets there). He is also trying to make himself my 22 pound tumor on my hip. He wants me ALL THE TIME!! Not just wants me, he wants me to carry his little alabaster butt all over the place! We have his MRI next month. I continue to pray that he doesn’t need any surgery. I am tired of watching my children have to go through surgery all the time!!
Other than that, just trying to stay cool.
Take Care and God Bless,
Renee
Wednesday, July 19, 2006 10:25 AM CDT
Hi there again everyone,
I forgot a few things. One, DOES ANYONE KNOW HOW TO MAKE THIS PICTURE SMALLER!!??? I am just heartbroken, as I downloaded all my photos on my digital camera to be made into a cd at Walmart. I love the way Walmart pictures come out as well as their cd’s, but for some reason yesterday the disk they made was missing a lot of my recent pictures, BUT I thought they were on the cd so I erased my digital camera’s memory card. I am devastated. Soooo, I had already printed a bunch and so I scanned these photos in, but don’t know how to adjust the size. Thanks in advance for any help!
Also thought I’d let you know how the car situation is. The head gasket is still not fixed, the radiator is still not fixed, BUT we did get the conversion van running, only to have the alternator go!!! Can you believe that?? Three vehicles and none were working. We did get the alternator fixed and had to replace a couple of tires (owner before us put on “car” tires, not truck tires and they were all worn down severely).
In addition to all of this, our basement flooded last Wednesday when we got some torrential downpours. The sewers backed up into much of the Village’s homes. It was disgusting and we lost a lot of stuff (some we could do without anyways LOL). Had to buy a new de-humidifier, as well as a new utility pump. All this right before we were suppose to go out to Lake George for the week. So those plans are now shorted to Friday through Monday. We’ll still show Tray a great time though!
Well, that’s it!
Talk again soon,
Renee
Tuesday, July 18, 2006 7:18 AM CDT
Hi everyone,
Soooo sorry it has been so long since the last update. Marriela has long since recovered from her illness. She ran high fevers for about 4 days and was “punky” for several more, but then was right back to her enthusiastic self. LOL I had the pleasure of going Friday to Saturday for a scrap booking retreat. Then on Sunday we took the kids to the Pediatric Brain Tumor Foundation’s “Ride For Kids” in Old Forge. We didn’t get an actual invitation for some reason so we just sort of “showed” up since we’ve been going since the very first ride. Afterwards we were took the kids to a water park that is literally just around the corner from where the motorcycle ride finished. It was a VERY hot day, but the kids had a great time splashing around in the water.
Since our last update, Joshua has been to his second test and the doctor. No answer could be found for urinary urgency BUT the VCUG showed grade 3 reflux into the right kidney again. This is the same kidney that was so swollen when he was born and required surgery at 3 months to correct. Well, if this reflux doesn’t reverse and resolve then he will have to have the same surgery again. I can tell you, it was a big surgery back then (7 days in the hospital and he had to have drainage stents in place for 6 days along with being catheterized for most of the time as well) it was a long week as a 3 month old, I DON’T think he’ll like it any more at 11! He’s also having more seizures, BUT most are heat related (it’s been very hot for our neck of the woods) so we haven’t jumped to increase the meds again. Otherwise, Joshua is doing great. He and Nettie are off to camp tomorrow (this is the camp that called and said that Tray can’t come now). He’s getting very excited.
Nettie is already packed for camp, and driving me CRAZY with her obsessive need to prepare for everything weeks and days in advance! LOL Anyone that knows me, know that I function better under stress than I do “planning”. I ALWAYS forget something when I plan, but do something with a 10 minute time limit and I’ll not only have what we need, but I’ll have the bags packed, organized and NOTHING will be left behind. LOL Well, that’s not entirely the truth, usually something of rather important value is left home but I figure, I forget things when I prepare, and when I don’t so why do things before you need to! LOL She’s not really bothering me, just joking She is feeling and looking great. Nettie had a WONDERFUL time at Camp Good Days and called me on the way home to tell me that she can’t wait until next year. I can’t believe it took 6 years to convince her to go back and try it and now that she finally did, it’s probably the last year she could go. Sigh. But at least it was a great time for her.
Tray is doing very well. He was soooooo “bored” yesterday because we wouldn’t take him out to the pool (the heat index was 104 degrees and the humidity was at 90% - I was virtually usless all day!). We promised him today would be a better day for swimming and that he’ll get some extra time today, but that didn’t help yesterday’s boredom. LOL
Cody is getting sooooo big. He is now 10 months old and weighs 21.5 pounds. He has taken his first steps, BUT fell onto his forehead after about 10 minutes of practice and decided to NOT try that again. So he’s gun shy right now about taking any more independent steps (this is just fine with me, I don’t want him to walk yet!). His little red head personality is shining through more and more every day. He has a well developed sense of humor (which is usually directly tied to me telling him “No.” to something) as well as a well developed temper (which is usually directly tied to me telling him “No.” to something. - OR - mommy and daddy won’t carry him around ALL DAY LONG!) LOL. His top 4 teeth are coming in all at once and that makes for some very cranky days lately.
Marriela is doing wonderful. She is LOVING summer school and it is so good for her to maintain her routine. She is soooo good with Cody and they love playing together. I can’t imagine anyone of my children without the others. They are all so intertwined. Joshua and Tray’s lives would be sooooo radically empty without one another. Same for Cody and Marriela, and Nettie wouldn’t be the wonderfully empathetic and kind “big” sister if she hadn’t had the rest to learn from.
God is Good.
Well that catches us up for now!
Take Care and God Bless,
Renee
Tuesday, July 18, 2006 7:18 AM CDT
Hi everyone,
Soooo sorry it has been so long since the last update. Marriela has long since recovered from her illness. She ran high fevers for about 4 days and was “punky” for several more, but then was right back to her enthusiastic self. LOL I had the pleasure of going Friday to Saturday for a scrap booking retreat. Then on Sunday we took the kids to the Pediatric Brain Tumor Foundation’s “Ride For Kids” in Old Forge. We didn’t get an actual invitation for some reason so we just sort of “showed” up since we’ve been going since the very first ride. Afterwards we were took the kids to a water park that is literally just around the corner from where the motorcycle ride finished. It was a VERY hot day, but the kids had a great time splashing around in the water.
Since our last update, Joshua has been to his second test and the doctor. No answer could be found for urinary urgency BUT the VCUG showed grade 3 reflux into the right kidney again. This is the same kidney that was so swollen when he was born and required surgery at 3 months to correct. Well, if this reflux doesn’t reverse and resolve then he will have to have the same surgery again. I can tell you, it was a big surgery back then (7 days in the hospital and he had to have drainage stents in place for 6 days along with being catheterized for most of the time as well) it was a long week as a 3 month old, I DON’T think he’ll like it any more at 11! He’s also having more seizures, BUT most are heat related (it’s been very hot for our neck of the woods) so we haven’t jumped to increase the meds again. Otherwise, Joshua is doing great. He and Nettie are off to camp tomorrow (this is the camp that called and said that Tray can’t come now). He’s getting very excited.
Nettie is already packed for camp, and driving me CRAZY with her obsessive need to prepare for everything weeks and days in advance! LOL Anyone that knows me, know that I function better under stress than I do “planning”. I ALWAYS forget something when I plan, but do something with a 10 minute time limit and I’ll not only have what we need, but I’ll have the bags packed, organized and NOTHING will be left behind. LOL Well, that’s not entirely the truth, usually something of rather important value is left home but I figure, I forget things when I prepare, and when I don’t so why do things before you need to! LOL She’s not really bothering me, just joking She is feeling and looking great. Nettie had a WONDERFUL time at Camp Good Days and called me on the way home to tell me that she can’t wait until next year. I can’t believe it took 6 years to convince her to go back and try it and now that she finally did, it’s probably the last year she could go. Sigh. But at least it was a great time for her.
Tray is doing very well. He was soooooo “bored” yesterday because we wouldn’t take him out to the pool (the heat index was 104 degrees and the humidity was at 90% - I was virtually usless all day!). We promised him today would be a better day for swimming and that he’ll get some extra time today, but that didn’t help yesterday’s boredom. LOL
Cody is getting sooooo big. He is now 10 months old and weighs 21.5 pounds. He has taken his first steps, BUT fell onto his forehead after about 10 minutes of practice and decided to NOT try that again. So he’s gun shy right now about taking any more independent steps (this is just fine with me, I don’t want him to walk yet!). His little red head personality is shining through more and more every day. He has a well developed sense of humor (which is usually directly tied to me telling him “No.” to something) as well as a well developed temper (which is usually directly tied to me telling him “No.” to something. - OR - mommy and daddy won’t carry him around ALL DAY LONG!) LOL. His top 4 teeth are coming in all at once and that makes for some very cranky days lately.
Marriela is doing wonderful. She is LOVING summer school and it is so good for her to maintain her routine. She is soooo good with Cody and they love playing together. I can’t imagine anyone of my children without the others. They are all so intertwined. Joshua and Tray’s lives would be sooooo radically empty without one another. Same for Cody and Marriela, and Nettie wouldn’t be the wonderfully empathetic and kind “big” sister if she hadn’t had the rest to learn from.
God is Good.
Well that catches us up for now!
Take Care and God Bless,
Renee
Sunday, July 2, 2006 9:08 PM CDT
Well, the car situation is still just that. . . A situation. LOL Working on a home improvement loan that will now also double as a “car” improvement loan. J
Marriela has been battling some sort of virus or infection. Friday night Peter said “I think Marriela feels hot.” Well, in our house, with no central air, EVERYONE “feels” hot. So I went to bring her a fan and realized that he really meant “feels HOT”. She had a temp of 104 degrees. Poor baby was hallucinating and thought there were “big ones” in her bed and was terrified of her crib. Then, while sitting on the toilet she was following something all around the bathroom floor with her eyes and kept asking me if the “big ones were going away?” She laid with us until her temp came down a bit and she was able to be reasoned with about the safety of her crib. She’s been running a temp since (but today it’s been lower and taking longer to come back) and quite quiet. Hopefully we’ll avoid a doctors visit tomorrow and she’ll stay fever free through the night.
Everyone else is still great.
Tomorrow is our 13th Anniversary!! I just want to say to Peter (if he checks here) that I love you with all of my heart. You ARE my soul mate. Our family would and could never be the same without you and sense of humor. I thank you for allowing me to share my dreams of adoption with you, for allowing me to be myself at every turn in life and for loving each and everyone of our kids like a real father should. You are wonderful and I am so very lucky to have you in my life.
I love you,
Renee
Take Care and God Bless,
Renee
Thursday, June 29, 2006 9:32 PM CDT
Hello everyone!!
The excitement never ends here. LOL We’ve been still trying to fit in lots of stuff, BUT we are now down to NO reliable vehicles. Let me explain. We have 3 vehicles. A 1998 Pontiac Montana (my car, love it), a 1991 Cadillac DeVille (Peter’s car, hate it - I call it the “pimp mobile”) and a 1998 Ford conversion van (it takes over $100 just to fill the tank with gas!). Our most reliable car has always been the minivan but Peter’s Cadillac was always his reliable form so we had two good cars. Well last fall the radiator went cupputy (is that the spelling for that word?) and we didn’t have the cash to fix it so we just sort of let it sit most of the time using it only for quick trips here and there (it has to be a quick trip because nothing but scalding hot air comes out of the vents and causes blisters on the tops of my feet LOL). The big van has a flat tire and since we didn’t plan to use it that much since it is SO expensive for gas we were also just going to let that one hang out until we needed it for a trip or something. BUT, yesterday I received the devastating news that I have blown a head gasket. Now that doesn’t sound like a big thing to ME, but apparently it is. So now, we have in our driveway, one car with no radiator (at least not one that functions well), one that has a flat tire and costs $10 just to go to Dunkin’ Donuts (see where my mind is. . .) and one that is living on borrowed time before the engine block cracks or we fix the $1000 head gasket problem. I think Peter needs to go back to school to learn how to be a car mechanic!! It seems that is were the good money is. At least our good money.
I’ll keep you updated on our car dilemma as we attempt to solve it.
As for the kids. Tray just finished Jr. Good Days and Special Times camp. He had a great time. It was Mon. - Thurs 8:30 - 3:00. Today he went to the beach. He LOVES the beach. Yesterday they went fishing and he brought home two very nice trout that we will save for when grandpa comes to cook them for us. LOL I sent a letter to Double H Hole in the Woods camp (the one that said he can’t attend now) to let them know how very disappointed I was in their decision as well as the way they went about it. I tracked down the fax numbers to all of the doctors on the Medical Advisory Board and faxed them last night. I doubt it will make much impact this summer, but maybe for next year. Otherwise, Tray is doing great!
Joshua was suppose to go to Rochester today but couldn’t (see above for reason why). His doctor called us personally when he heard we were unable to make the trip and let us know that he spoke with the team and Joshua is a definite candidate for the VNS surgery. We now have an appointment on the 21st to meet with the neurosurgeon who does the implants at Strong. In addition, we had to increase his meds again because the seizures had returned. He is doing very well however on only a very minimal increase. This coming week he has one more study for urology and then we meet with the doctor. I hope this test isn’t to unpleasant for him. He does such a great job sitting still and I hate to have to see him sad and in pain.
Nettie saw the Plastic surgeon for her post op follow-up. He let her know that she is now free to wear whatever she wants to and enjoy her new look. He did tell her that he misjudged how much he was removing and now there is still a discrepancy, but it’s reversed now. The small side is now the large side and the large side is now very much the smaller side. So if she wants, in six months, she can decide if she wants the other side done as well. She plans on doing it now, but I think that will change as she sees there really is no reason to. She looks wonderful. She is off to the first of her three camps this summer next week. This is the camp that she has been scared to go back to ever since the young woman with the amputated arm “stalked” her the entire week she attended 6 years ago!! She still doesn’t believe us that the young woman isn’t there anymore, BUT is willing to at least go and find out for herself. LOL
Cody is doing very well. He is cruising ALL OVER the house and pretty much anything that isn’t tied down, is his personal “walker”. We are going to try him in the swimming pool this coming week (been raining a lot this week). My suspicion is that he is going to hate it (he HATES bath time!) but you never know! LOL
Marriela starts summer school next week. She LOVES going for walks and never ceases to amaze us with her speed and agility when we’re out and about. We are trying to teach her how to relax and enjoy the library but it may end up being an all summer lesson. LOL
As for our outings. Well today we took the kids (except for Tray who was at camp) to the Museum of St. Marie of the Iroqouis. It is a real-life replica of a 1718 French Missionary camp. It was fun teaching Nettie and Joshua about how life was back then. Joshua really gets into history when he focuses long enough to listen. Even Nettie really seemed to learn a bit from the outing.
Yesterday we walked down to the library (about 4 blocks) and signed up Joshua, Marriela and Trayvon for the reading club. Nettie had to read 2 books to me and I was shocked at just how GOOD she can read!! We’re going to do this at least 2 times each week. Joshua has already “read” 3 books (Joshua doesn’t actually read the books he gets from cover to cover - he is more of a skimmer - reading just the captions under pictures and such. But I count it as reading for the club because he IS reading and he IS learning, even if it is just about more wrestling LOL).
Tomorrow we are going to take the gang down to the Inner Harbor area and dance to some bands and do some kids activities after dinner. Then we’re going to see our first fireworks as a family. I can’t wait!
Well, that’s it for now!
Take Care and God Bless,
Renee
Thursday, June 29, 2006 9:32 PM CDT
Hello everyone!!
The excitement never ends here. LOL We’ve been still trying to fit in lots of stuff, BUT we are now down to NO reliable vehicles. Let me explain. We have 3 vehicles. A 1998 Pontiac Montana (my car, love it), a 1991 Cadillac DeVille (Peter’s car, hate it - I call it the “pimp mobile”) and a 1998 Ford conversion van (it takes over $100 just to fill the tank with gas!). Our most reliable car has always been the minivan but Peter’s Cadillac was always his reliable form so we had two good cars. Well last fall the radiator went cupputy (is that the spelling for that word?) and we didn’t have the cash to fix it so we just sort of let it sit most of the time using it only for quick trips here and there (it has to be a quick trip because nothing but scalding hot air comes out of the vents and causes blisters on the tops of my feet LOL). The big van has a flat tire and since we didn’t plan to use it that much since it is SO expensive for gas we were also just going to let that one hang out until we needed it for a trip or something. BUT, yesterday I received the devastating news that I have blown a head gasket. Now that doesn’t sound like a big thing to ME, but apparently it is. So now, we have in our driveway, one car with no radiator (at least not one that functions well), one that has a flat tire and costs $10 just to go to Dunkin’ Donuts (see where my mind is. . .) and one that is living on borrowed time before the engine block cracks or we fix the $1000 head gasket problem. I think Peter needs to go back to school to learn how to be a car mechanic!! It seems that is were the good money is. At least our good money.
I’ll keep you updated on our car dilemma as we attempt to solve it.
As for the kids. Tray just finished Jr. Good Days and Special Times camp. He had a great time. It was Mon. - Thurs 8:30 - 3:00. Today he went to the beach. He LOVES the beach. Yesterday they went fishing and he brought home two very nice trout that we will save for when grandpa comes to cook them for us. LOL I sent a letter to Double H Hole in the Woods camp (the one that said he can’t attend now) to let them know how very disappointed I was in their decision as well as the way they went about it. I tracked down the fax numbers to all of the doctors on the Medical Advisory Board and faxed them last night. I doubt it will make much impact this summer, but maybe for next year. Otherwise, Tray is doing great!
Joshua was suppose to go to Rochester today but couldn’t (see above for reason why). His doctor called us personally when he heard we were unable to make the trip and let us know that he spoke with the team and Joshua is a definite candidate for the VNS surgery. We now have an appointment on the 21st to meet with the neurosurgeon who does the implants at Strong. In addition, we had to increase his meds again because the seizures had returned. He is doing very well however on only a very minimal increase. This coming week he has one more study for urology and then we meet with the doctor. I hope this test isn’t to unpleasant for him. He does such a great job sitting still and I hate to have to see him sad and in pain.
Nettie saw the Plastic surgeon for her post op follow-up. He let her know that she is now free to wear whatever she wants to and enjoy her new look. He did tell her that he misjudged how much he was removing and now there is still a discrepancy, but it’s reversed now. The small side is now the large side and the large side is now very much the smaller side. So if she wants, in six months, she can decide if she wants the other side done as well. She plans on doing it now, but I think that will change as she sees there really is no reason to. She looks wonderful. She is off to the first of her three camps this summer next week. This is the camp that she has been scared to go back to ever since the young woman with the amputated arm “stalked” her the entire week she attended 6 years ago!! She still doesn’t believe us that the young woman isn’t there anymore, BUT is willing to at least go and find out for herself. LOL
Cody is doing very well. He is cruising ALL OVER the house and pretty much anything that isn’t tied down, is his personal “walker”. We are going to try him in the swimming pool this coming week (been raining a lot this week). My suspicion is that he is going to hate it (he HATES bath time!) but you never know! LOL
Marriela starts summer school next week. She LOVES going for walks and never ceases to amaze us with her speed and agility when we’re out and about. We are trying to teach her how to relax and enjoy the library but it may end up being an all summer lesson. LOL
As for our outings. Well today we took the kids (except for Tray who was at camp) to the Museum of St. Marie of the Iroqouis. It is a real-life replica of a 1718 French Missionary camp. It was fun teaching Nettie and Joshua about how life was back then. Joshua really gets into history when he focuses long enough to listen. Even Nettie really seemed to learn a bit from the outing.
Yesterday we walked down to the library (about 4 blocks) and signed up Joshua, Marriela and Trayvon for the reading club. Nettie had to read 2 books to me and I was shocked at just how GOOD she can read!! We’re going to do this at least 2 times each week. Joshua has already “read” 3 books (Joshua doesn’t actually read the books he gets from cover to cover - he is more of a skimmer - reading just the captions under pictures and such. But I count it as reading for the club because he IS reading and he IS learning, even if it is just about more wrestling LOL).
Tomorrow we are going to take the gang down to the Inner Harbor area and dance to some bands and do some kids activities after dinner. Then we’re going to see our first fireworks as a family. I can’t wait!
Well, that’s it for now!
Take Care and God Bless,
Renee
Saturday, June 24, 2006 10:34 AM CDT
Hello everyone!
We’ve been soooo busy! But in a great way. The kids are officially out of school and the last week has been all half days. So we have taken advantage of the still cooler summer weather (high 70’s - low 80’s) and going to lots of different parks. Wednesday we took the kids down to the big playground just a few moments from our house. They played a while and then we took the tram ride that goes all up and down this side of the lake. Afterwards we really thought that the Tram ride would be the wrap up but noooooo. . . JOSHUA (of all the kids) took off back to the park and had a GREAT time running around with his sister and brother and going through the Mist Machine they have there. It was soooo wonderful seeing him having fun, as well as watching the other two enjoying their brother’s unexpected energy and enthusiasm. Nettie on the other hand didn’t get as much out of our trip. She is so much like a teenager (not wanting to hang with her family, not wanting to go to “playgrounds”, not wanting to “stay busy”) yet she is still so much a little girl (sad when we go somewhere without her, sad when she doesn’t get a “prize” like the young ones, mad when we talk “little kid talk” to the other kids and not her). It is so hard to know how to help her learn how to be happy with who she is.
*********I just received a call from Double H Hole in the Woods camp where the three older ones are scheduled to attend this summer. The medical director just informed me that Trayvon will not be allowed to attend. The feel that they are not capable of properly handling cardiac emergencies and therefore will not accept children with a primary diagnosis of “cardiac disorder”. I am heartbroken for Trayvon. He LOVES going to the camp with his brother and sister. This was something that they could enjoy together and now they can’t. He is going to be devastated. I am sooo mad and sad. He’s doing FANTASTIC right now, but they are looking at last years difficulties with admissions to the PICU for his arrhythmias and such and won’t look at this years progress. **********
Ok, back to the happy update. . .
Thursday we took them to the zoo where we all had a great time and got some good exercise. And yesterday we went to Beaver Lake State Park where we had a nice picinic and then walkrd the wheelchair trail ( 0.3 miles) and just had a nice time watching the children scare the beejeezum out of any wildlife in the forest with all of their exuberant yelling and antics LOLOLOL.
Today is cleaning day for me. Peter and Trayvon are going over to watch my niece’s soccer game and Nettie is at Casey’s Place for the weekend. So I hopefully will get some much needed cleaning done! LOL
I also thought I would let you know that Peter and I have started a training program to run a 5k in the fall! It’s called C25K (Couchpotato to 5K). I finish up the first week this week. I’m sore as can be afterwords, but it feels good to know that I am working hard towards something that’s good for me. I’ll keep you updated on my progress.
As for the medical updates.
Cody had an uneventful well child visit for his 9month check-up. They will recheck his anemia status at his next check-up at one year old. He is finally scheduled for his MRI on August 24th. It was the earliest our hospital could get him in. So until then, we just enjoy summer!
Joshua had his VCUG and handled it like a champ. He was scared to death to go but once I told him NOT TO PEE on the nurses he started laughing his head off and off he went. Still scared but now he had a mission to accomplish. . . Pee on the nurse. LOL We don’t know the results yet. He has his other study on July 6th and then we go right back to urology after the test so she should be able to tell us the results right then.
Trayvon continues to wonderful. He is a bit sad that he is staying in 2nd grade again, but seems to be handling the news well and the kids coming into second grade are suppose to be a wonderful group of kids. I also had his meeting to discuss his classification from 12:1:1 to 15:1. Well, I think they feel as though they won because he has 15:1 on his IEP. HOWEVER, before you think I was a spineless jellyfish, I insisted that the only way they could put that classification on his IEP was if they ALSO put 4 hours of access daily to a classroom assistant AS WELL as access to an assistant during playground and lunch activities (he loves to stuff and then vomit and on the playground. . . Well that was more because of last years scare with his arrhythmias, but I wasn’t going to give an inch so I insisted on it this year as well LOL - if they can play games, so can I). So in the end, he has exactly what he had last year, but they got to put 15:1 on his IEP which apparently is all it took to make them happy.
Nettie is doing well. She is at Casey’s Place this weekend. She and I went shopping last week looking for some summer clothes. It is SO FRUSTRATING that they make all of the “juniors” clothes tight fitting and skin baring. Nettie’s body type is just not meant for tight clothes or for a lot of skin showing. BUT all she sees that she wants is what is in the magazines, the circulars and in the junior sections of stores. In the end we did find a shirt she liked as well as some shorts and a cute pair of sneakers, but it was a trip filled with tears as she realized that what she thought she was going out to buy, was not what I was going to allow her to wear. I felt like a horrible mean mother trying to kindly word it so that she understood why she can’t where something that accentuates every roll and every bulge a person has on their body. I try to use myself as an example, but in the end, if I do start to lose weight due to this training program then I am part of the problem (in her eyes) as well, since I can fit into the very clothes she can’t wear. Sigh. . .
And Marriela. She is doing very well. We are going to be trying something called Melatonin at night now to see if that helps. It’s over the counter but can be quite powerful so we thought we would give it a try since the Clonapin didn’t work. She had her moving up ceremony and had to be carried over the “bridge” because she has a big fear of going over things that she can “see through” (like slats in boards on a porch or playground equipment that has a “mesh” appearance). She feels like she is going to fall and she would NOT go over the little bridge they had built for her moving up ceremony. Peter said it was hilarious (I was at Trayvon’s IEP meeting so I missed it).
And that’s it for now! LOL We are having another pool emergency. The motor died (only 2 years old) so we have to scrape together $200 to replace it. Right now we have a large bowl of pea soup in our backyard. It looks awful and is truly an embarassment right now! Not to mention that on the 90 degree days we could have really used it!
Till next time.
Take Care and God Bless,
Renee
Friday, June 16, 2006 6:53 PM CDT
Hi everyone!
Well, once again, another week slipped by before I knew it. We have been very busy and life sometimes just seems to FLY past us. And yet, for other families, time is painfully standing still as they say their final good-byes to their precious children.
Jacob Duckworth and his family have been a true inspiration to me. For several reasons. One they are an absolutely GORGEOUS family. Next, their faith is unwavering. At least in the journals for us to read, there is no shame, no fear, no embarassment to share their faith in God with the whole world. I truly admire this characteristic in many others I have met via the Caringbridge family. And finally, Jacob himself is the true meaning of determination and tenacity. He defied the greatest of odds, the bleakest of prognosis’, the worst of cancers. Earlier in the week, he finally got to meet his maker as a special angel of God. My heart aches for this family as his place in the household was truly treasured and adored. Please take a moment to stop and offer your words of encouragement and support.
http://www2.caringbridge.org/fl/jacob/
In another part of the country and much closer to home. A fellow patient from University Hospital joined Jacob. Brittany was a beautiful young lady of 17 years and was fighting an amazing fight with AML. She had just completed her bone marrow transplant and just days earlier was doing so well she was enjoying spending time with family at a barbaque. Life can be so unpredictable at times. 3 days later she passed peacefully in the arms of her mother in the PICU at CHOP. Another life altering day in the life of a family. Again, please stop by and offer your support. The words you chose are not important. . . It is the fact that you actually showed your support at all. Don’t be shy, they need you and I now, more than ever.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=brittanyclark
As for my little gang here in New York. Still waiting on the date of Cody’s MRI. The reason is because the earliest one they had wasn’t until late August and Dr. Carney just wasn’t happy with that date. AND Cody has to be treated as if he has Malignant Hyperthermia because his brother has it and it is hereditary, therefore he will always have be treated as though he has it. This means that he has to go first so that none of the gases that can cause the reaction are used in the breathing and anesthesia machines before they use them on him. This makes scheduling things for him and Joshua a lot more tricky.
Joshua finally saw the urologist today. She can’t explain the problems AND feels that he definitely has a problem. Therefore, after doing an ultrasound with no explanation he has to go for his own VCUG as well as a Urodynamics study. The VCUG is the same test that Cody just had, so if you want more info, go back to the journal history and check out what is involved. Needless to say, Joshua is not all that happy about it, but didn’t really complain either. I have great kids. We go for the urodynamic study (another fun one, NOT) on July 6th with an appointment with the urologist immediately following. I pray that he is not refluxing again into his kidneys. He had this as an infant and had to have a big surgery to re-implant his ureter onto another section of bladder. These studies should answer all of the questions.
Cody sees the pediatrician on Monday for his 9 month check-up (I don’t think he’s due for any shots though).
Marriela has her appointment with ENT at the end of next month and we’ll probably schedule her for some more ear tubes. She has had fluid behind the one ear for quite sometime now and it bothers her quite a bit. I am wondering if this is the reason for her PERSISTANT inability to sleep through the night. What a blessing if it is that simple. LOL
Nettie is now pain free!! She hasn’t had any more real complaints since last week and she starts home based PT next week to work on loosing up the areas of surgery. I am pleased that she feels so good and she loves that some of her clothes are fitting her much better.
Tray is doing great! I go next week (Peter is going to go to Marriela’s moving up ceremony, which I am so upset that I have to miss,) to fight the Director of special education on what is best for Tray. Again, I explained it all in a previous journal entry so just scan down quickly for the Trayvon entry that deals with his school issue. LOL
Peter and I are doing great, gearing up for a busy, busy summer!
Take Care and God Bless,
Renee
Friday, June 9, 2006 8:33 PM CDT
*NOTE - you may have to go back and check the journal history if you seemed lost. LOL
God is good. Trayvon’s visit to the cardiologist brought exactly the opposite of what we thought it was going to. Nothing but great things. First, he HAS gained 15 pounds since his last visit there 6 months ago. The doctor was stunned! LOL But it is all GOOD weight vs. water weight. We even had an echo to verify that fact. Next, the cough is just that, a cough. His heart function on echo was the same as always (now, mind you, that his heart function is poor, BUT functioning well enough for Tray to be living life as a virtually normal 7 year old. . . This has not changed at all). No change in meds and best of all, we get to go another 6 months before going back!! YEAH for Tray!
Still have no word on Cody’s MRI or urology appointment or Joshua’s urology appointment. Joshua had a good sized seizure at breakfast today (this is a common time for him to have them when he’s having active seizures). I’ve only seen a few since the removal of his Topomax medication. Hopefully, this was just a stray seizure. J
Nettie still has a lot of back pain where she had her liposuction and is frustrated that it is still an issue for her. I am shocked that this is all she has for pain, but you know kids, once it is over, they think things should be all OVER! LOL We try to assure her that she is doing fine and that the pain is normal healing. I don’t think she is buying it.
Marriela is doing great. She was as active as ever at the cardiology appointment but she was enthralled by a life size (3 yr old life size that is) Barney. Did I ever tell you that she is a Barney fan. I don’t think I could reiterate that strongly enough!!! She LOVES Barney!
And finally, some sad news. Many of you may (or may not) remember me talking about Nettie’s old nurse, Joanne, from a couple of years ago. She had been with our family since our relocation to upstate NY. A total of 8 years as Nettie’s full time nurse. She was one of the family. Well, her mother was tragically trapped in her home when it caught fire and she passed. I took Annette, Joshua, Trayvon and Cody to the viewing this evening. Nettie and Joshua were very reserved. I had to actually pull Joshua into the room. Tray went right up to Joanne’s mother and said a little prayer. He did fantastic. This was the very first funeral or wake the kids had been too. They all did well. However, the onslaught of questions in the car on the way back home was almost overwhelming! LOL Both boys wanted to know where her oxygen was (she was on oxygen 24/7). I tried to explain that since she was no longer alive, she was no longer breathing and therefore no longer needed the oxygen. Well, Joshua wanted to know why she died if she had oxygen (she died from smoke inhalation) to breath in the fire. I was struggling to keep my head above water at this point. Tray wanted to know why we didn’t have a funeral for our rabbit, Willow, when he died. Joshua was very concerned because the firemen didn’t get to her in time to save her . . .”Mommy, the firemen were to late to put out the fire.” “They didn’t get there fast enough.” I could tell this was his biggest concern. We have always taught the children that firemen are heros because they save people and here was a situation that complete falsified that notion. I’m glad I took them, but I wish I hadn’t mentioned how she passed. I think it was to much to learn at one time. Sigh… even parents need to keep learning.
Well, that’s it for now. Have a wonderful weekend!
Take Care and God Bless,
Renee
Thursday, June 8, 2006 11:46 AM CDT
Ok, here is the last of updates. . . It’s been busy here lately! LOL
Tray is still having problems. The school nurse took his blood pressure yesterday and it was 116/80. This is VERY high for a child with his physiology (he has a very unique heart arrangement). In addition, he came home from school 3 pounds heavier than went I sent him. This means that he is now gaining water weight during the day as well as at night. Sooo, today we went for his bloodwork and the cardiologist wants to see him tomorrow for a full work up. I’ll let you know how that goes tomorrow.
Cody’s Ultra Sound was a breeze and everything looked great. I don’t know if that was a good or bad thing. Since there is no anatomical reasons for his urinary issues, then that leaves only a neurological one. I don’t know what is better any more. But he is happy today not to be the one being poked and prodded.
Nettie came home from school with a bad G-tube infection. Her nurse was concerned at school when she kept trying to dig at it. We are hoping we can work on it at home without needing to see another doctor.
Joshua and Marriela however, are doing very well. Joshua goes next week for his follow-up with neurology. I am just waiting patiently for his urology appointment. We are also giving Joshua a trial run off of his ADD meds. Again. . . I’ll keep you posted. LOL
Well, that’s today’s update, see you tomorrow!
Renee
Tuesday, June 6, 2006 3:32 PM CDT
Hi everyone,
Well, I felt like I should update on Cody’s appointment. He did GREAT with the whole procedure. The doctor had to “fix” his foreskin a bit to accept the catheter but it was quick and other than a few tears, Cody didn’t seem any worse for the wear. We went over to the hospital with the catheter in place in his diaper. After what seemed like a forever wait (made the most of it by sharing a chocolate chip muffin and a VERY large coffee. . . Well, I drank the coffee, Cody played with the cover) we went in and proceeded to finish what we had actually started almost 2 weeks ago. They started with a quick x-ray of his bladder before adding anything and noted that he was already more than ½ full (apparently this fact alone is not “normal”). They then attached a small nozzle to his catheter and let a special fluid flow into his bladder to fill it up, taking pictures as they went along. Once they finally got the tegaderm off his “bug” to remove the catheter (which was by far the worst of the entire ordeal) he was suppose to pee for them. But instead, he just dribbled. Then he did start to go, but only for a moment and then dribbled again, he repeated this process 2 more times. In the end, he never fully emptied his bladder. This is not normal. This bought him another trip to another specialist and 2 more lovely tests to endure. Tomorrow he will have an Ultra Sound of his bladder and kidneys just to be sure that there is no anatomical reason for the weak bladder (none was noted on the VCUG, but sometimes it takes a different view to see something). He is also going to have a full MRI of his entire spine to look for the tethered cord that the surgeon is more and more confident he has. This should take place sometime within the next week or so. If he does in fact have the tethered cord, he will have to have surgery relatively soon. It is about a 4-6 hour surgery with a 2-3 day stay in the PICU. This was a lot to take in today. In addition to that, the surgeon now has him on a daily prophylactic to ward off any kidney or urinary tract infections due to the constant urine present in his system. We will have to see a urologist now as well to see how we address this issue. Even if he does have a tethered cord and he has surgery right away to fix it, the damage to the bladder nerves is irreversible and therefore this will be an ongoing issue for him. Say a little prayer for our Cody Bear. Other than that, all is well today and he is full of smiles and laughs!
Monday, June 5, 2006 12:33 AM CDT
Hi everyone,
I am soooo sorry that it has taken me so long to get to an update. We have been very busy here doing nothing and everything! LOL
Nettie came through her surgery beautifully! I just love Strong Memorial Hospital, they take very good care of us whenever we are there. Nettie’s nurse, Ginger, stayed overnight with her at the hospital and had Nettie up and moving by that same evening. I would have coddled her for weeks if you’d left it to me. LOL Annette went to school for her first full day today. Hopefully it won’t hurt her to much to sit in her wheelchair all day. She did need to leave Church early yesterday due to back pain. But overall, she is doing WONDERFUL!
Tray has a cardiologist appointment next week and I am sooo happy he does. He has woken up all swollen the past several days. Yesterday he awoke and weighed 2.4 pounds heavier than the day before! We gave him a big extra dose of Lasix and by the end of the day he had lost 2 pounds in just water weight. I think that he heart is having difficulty keeping up with his new size. He has gained 13 pounds in just 6 months!!! And he’s grown over 5 inches in the same time. He fits almost NONE of his summer clothes from last year and I have even started putting on some of Joshua’s shorts (since now Joshua is still losing weight! LOL). He now also has a cough that is very reminiscent of when he was having difficulty before with valve leakage so I will be happy to have the cardiologist look at him next week. We are also struggling with the school system for the best program for Trayvon. Tray has been what you call, 12:1:1 for the past 3 years now. Technically, back in the old days, this would have meant that Tray would have been in a class with only 12 students, one teacher and one assistant. However, Tray is in a fully-inclusive classroom and has a special ed teacher that pops in and out of his day to offer assistance to him and any other number of students with special needs. It also means that his classroom has an assigned assistant to it. The district wants to re-classify him as !5:1. This would remove the assistant from his class AND require him to have limited access to the special ed teacher since she needs to spend more time with her 12:1:1 kids. Tray has severe ADD but can’t be medicated for it due to his cardiac issues, therefore the only way to remediate his attention issues is with direct, person to person interaction and redirection. The districts philosophy is that unless you are “Life Skills” tracted (in other words, not graduating with a diploma of any type) then you can’t be 12:1:. This is the most RIDICULOUS thing I have ever heard! So we have to go fight it out with the big wigs sometime in the near future. Wish us luck! LOL Oh yeah, we also made the decision to hold Trayvon back in 2nd grade again next year. He knows and is fine with it.
Joshua had his IEP meeting and everything will stay the same for him. He will remain a 12:1:1 student (I don’t know why we are fighting about Tray, but they’re not saying anything about Joshua???). We are going to retain Joshua for one more year of 6th grade after next year. Health wise Joshua is doing very well with the exception of the urination issue. Still waiting on the urologist to give us an appointment after she reviews Joshua’s chart.
Marriela, well, she’s Marriela. LOL!!! She is doing great. We are actively looking for another half day program for her to attend so that she can be in school for a full day in preparation for kindergarten the following year. It will also make it easier for either me or Peter to get back to work without worrying about daycare for our high strung angel.
And last but not least, Cody. He saw the GI today who now wants to do a PH probe. But since tomorrow he his having his VCUG (trying it again) I thought it cruel and unusual punishment to do both tests back to back. So we have to go back to GI in the next week or so for placement of the Ph probe for 24 hours. After his VCUG tomorrow we will go right back over to see the Dr. for a reading of results, if all is well, then we call it quits looking for a tethered cord. . . If it isn’t normal, we go for a STAT MRI. I am confident it will be fine. He also saw the Immunology doctor and had his labs drawn to check part of his immune system. He will have the second part of the evaluation after he turns one year old. We should be hearing from the Immunologist in the near future with his results.
Well, I think that catches us up to the present!
Take Care and God Bless,
Renee
Tuesday, June 6, 2006 3:32 PM CDT
Hi everyone,
Well, I felt like I should update on Cody’s appointment. He did GREAT with the whole procedure. The doctor had to “fix” his foreskin a bit to accept the catheter but it was quick and other than a few tears, Cody didn’t seem any worse for the wear. We went over to the hospital with the catheter in place in his diaper. After what seemed like a forever wait (made the most of it by sharing a chocolate chip muffin and a VERY large coffee. . . Well, I drank the coffee, Cody played with the cover) we went in and proceeded to finish what we had actually started almost 2 weeks ago. They started with a quick x-ray of his bladder before adding anything and noted that he was already more than ½ full (apparently this fact alone is not “normal”). They then attached a small nozzle to his catheter and let a special fluid flow into his bladder to fill it up, taking pictures as they went along. Once they finally got the tegaderm off his “bug” to remove the catheter (which was by far the worst of the entire ordeal) he was suppose to pee for them. But instead, he just dribbled. Then he did start to go, but only for a moment and then dribbled again, he repeated this process 2 more times. In the end, he never fully emptied his bladder. This is not normal. This bought him another trip to another specialist and 2 more lovely tests to endure. Tomorrow he will have an Ultra Sound of his bladder and kidneys just to be sure that there is no anatomical reason for the weak bladder (none was noted on the VCUG, but sometimes it takes a different view to see something). He is also going to have a full MRI of his entire spine to look for the tethered cord that the surgeon is more and more confident he has. This should take place sometime within the next week or so. If he does in fact have the tethered cord, he will have to have surgery relatively soon. It is about a 4-6 hour surgery with a 2-3 day stay in the PICU. This was a lot to take in today. In addition to that, the surgeon now has him on a daily prophylactic to ward off any kidney or urinary tract infections due to the constant urine present in his system. We will have to see a urologist now as well to see how we address this issue. Even if he does have a tethered cord and he has surgery right away to fix it, the damage to the bladder nerves is irreversible and therefore this will be an ongoing issue for him. Say a little prayer for our Cody Bear. Other than that, all is well today and he is full of smiles and laughs!
Monday, June 5, 2006 12:33 AM CDT
Hi everyone,
I am soooo sorry that it has taken me so long to get to an update. We have been very busy here doing nothing and everything! LOL
Nettie came through her surgery beautifully! I just love Strong Memorial Hospital, they take very good care of us whenever we are there. Nettie’s nurse, Ginger, stayed overnight with her at the hospital and had Nettie up and moving by that same evening. I would have coddled her for weeks if you’d left it to me. LOL Annette went to school for her first full day today. Hopefully it won’t hurt her to much to sit in her wheelchair all day. She did need to leave Church early yesterday due to back pain. But overall, she is doing WONDERFUL!
Tray has a cardiologist appointment next week and I am sooo happy he does. He has woken up all swollen the past several days. Yesterday he awoke and weighed 2.4 pounds heavier than the day before! We gave him a big extra dose of Lasix and by the end of the day he had lost 2 pounds in just water weight. I think that he heart is having difficulty keeping up with his new size. He has gained 13 pounds in just 6 months!!! And he’s grown over 5 inches in the same time. He fits almost NONE of his summer clothes from last year and I have even started putting on some of Joshua’s shorts (since now Joshua is still losing weight! LOL). He now also has a cough that is very reminiscent of when he was having difficulty before with valve leakage so I will be happy to have the cardiologist look at him next week. We are also struggling with the school system for the best program for Trayvon. Tray has been what you call, 12:1:1 for the past 3 years now. Technically, back in the old days, this would have meant that Tray would have been in a class with only 12 students, one teacher and one assistant. However, Tray is in a fully-inclusive classroom and has a special ed teacher that pops in and out of his day to offer assistance to him and any other number of students with special needs. It also means that his classroom has an assigned assistant to it. The district wants to re-classify him as !5:1. This would remove the assistant from his class AND require him to have limited access to the special ed teacher since she needs to spend more time with her 12:1:1 kids. Tray has severe ADD but can’t be medicated for it due to his cardiac issues, therefore the only way to remediate his attention issues is with direct, person to person interaction and redirection. The districts philosophy is that unless you are “Life Skills” tracted (in other words, not graduating with a diploma of any type) then you can’t be 12:1:. This is the most RIDICULOUS thing I have ever heard! So we have to go fight it out with the big wigs sometime in the near future. Wish us luck! LOL Oh yeah, we also made the decision to hold Trayvon back in 2nd grade again next year. He knows and is fine with it.
Joshua had his IEP meeting and everything will stay the same for him. He will remain a 12:1:1 student (I don’t know why we are fighting about Tray, but they’re not saying anything about Joshua???). We are going to retain Joshua for one more year of 6th grade after next year. Health wise Joshua is doing very well with the exception of the urination issue. Still waiting on the urologist to give us an appointment after she reviews Joshua’s chart.
Marriela, well, she’s Marriela. LOL!!! She is doing great. We are actively looking for another half day program for her to attend so that she can be in school for a full day in preparation for kindergarten the following year. It will also make it easier for either me or Peter to get back to work without worrying about daycare for our high strung angel.
And last but not least, Cody. He saw the GI today who now wants to do a PH probe. But since tomorrow he his having his VCUG (trying it again) I thought it cruel and unusual punishment to do both tests back to back. So we have to go back to GI in the next week or so for placement of the Ph probe for 24 hours. After his VCUG tomorrow we will go right back over to see the Dr. for a reading of results, if all is well, then we call it quits looking for a tethered cord. . . If it isn’t normal, we go for a STAT MRI. I am confident it will be fine. He also saw the Immunology doctor and had his labs drawn to check part of his immune system. He will have the second part of the evaluation after he turns one year old. We should be hearing from the Immunologist in the near future with his results.
Well, I think that catches us up to the present!
Take Care and God Bless,
Renee
Monday, June 5, 2006 12:33 AM CDT
Hi everyone,
I am soooo sorry that it has taken me so long to get to an update. We have been very busy here doing nothing and everything! LOL
Nettie came through her surgery beautifully! I just love Strong Memorial Hospital, they take very good care of us whenever we are there. Nettie’s nurse, Ginger, stayed overnight with her at the hospital and had Nettie up and moving by that same evening. I would have coddled her for weeks if you’d left it to me. LOL Annette went to school for her first full day today. Hopefully it won’t hurt her to much to sit in her wheelchair all day. She did need to leave Church early yesterday due to back pain. But overall, she is doing WONDERFUL!
Tray has a cardiologist appointment next week and I am sooo happy he does. He has woken up all swollen the past several days. Yesterday he awoke and weighed 2.4 pounds heavier than the day before! We gave him a big extra dose of Lasix and by the end of the day he had lost 2 pounds in just water weight. I think that he heart is having difficulty keeping up with his new size. He has gained 13 pounds in just 6 months!!! And he’s grown over 5 inches in the same time. He fits almost NONE of his summer clothes from last year and I have even started putting on some of Joshua’s shorts (since now Joshua is still losing weight! LOL). He now also has a cough that is very reminiscent of when he was having difficulty before with valve leakage so I will be happy to have the cardiologist look at him next week. We are also struggling with the school system for the best program for Trayvon. Tray has been what you call, 12:1:1 for the past 3 years now. Technically, back in the old days, this would have meant that Tray would have been in a class with only 12 students, one teacher and one assistant. However, Tray is in a fully-inclusive classroom and has a special ed teacher that pops in and out of his day to offer assistance to him and any other number of students with special needs. It also means that his classroom has an assigned assistant to it. The district wants to re-classify him as !5:1. This would remove the assistant from his class AND require him to have limited access to the special ed teacher since she needs to spend more time with her 12:1:1 kids. Tray has severe ADD but can’t be medicated for it due to his cardiac issues, therefore the only way to remediate his attention issues is with direct, person to person interaction and redirection. The districts philosophy is that unless you are “Life Skills” tracted (in other words, not graduating with a diploma of any type) then you can’t be 12:1:. This is the most RIDICULOUS thing I have ever heard! So we have to go fight it out with the big wigs sometime in the near future. Wish us luck! LOL Oh yeah, we also made the decision to hold Trayvon back in 2nd grade again next year. He knows and is fine with it.
Joshua had his IEP meeting and everything will stay the same for him. He will remain a 12:1:1 student (I don’t know why we are fighting about Tray, but they’re not saying anything about Joshua???). We are going to retain Joshua for one more year of 6th grade after next year. Health wise Joshua is doing very well with the exception of the urination issue. Still waiting on the urologist to give us an appointment after she reviews Joshua’s chart.
Marriela, well, she’s Marriela. LOL!!! She is doing great. We are actively looking for another half day program for her to attend so that she can be in school for a full day in preparation for kindergarten the following year. It will also make it easier for either me or Peter to get back to work without worrying about daycare for our high strung angel.
And last but not least, Cody. He saw the GI today who now wants to do a PH probe. But since tomorrow he his having his VCUG (trying it again) I thought it cruel and unusual punishment to do both tests back to back. So we have to go back to GI in the next week or so for placement of the Ph probe for 24 hours. After his VCUG tomorrow we will go right back over to see the Dr. for a reading of results, if all is well, then we call it quites looking for a tethered cord. . . If it isn’t normal, we go for a STAT MRI. I am confident it will be fine. He also saw the Immunology doctor and had his labs drawn to check part of his immune system. He will have the second part of the evaluation after he turns one year old. We should be hearing from the Immunologist in the near future with his results.
Well, I think that catches us up to the present!
Take Care and God Bless,
Renee
Tuesday, May 23, 2006 9:03 PM CDT
Hi everyone,
This is going to be a quick update as I am at the Ronald McDonald House in Rochester and Cody is sleeping down in the bedroom. Nettie had her surgery today and she is doing AWESOME!! Her nurse, Ginger is spending the night at the hospital with her. She has already gotten out of bed and been to the bathroom. Ginger is definately tougher than I am on her! LOL But Nettie looks great and has really had very little pain medication considering the size of the surgery. She does still have a drain in her right side, and if it's still draining like it currently is, she will have to come home with it. But that's why we have a nurse. :-)
The rest of the gang is doing well.
Cody has been hanging out with me all day as we waited for Nettie to get out of surgery. He was fed up with the hospital situation by 6:30pm so we headed over here to the house.
Yesterday I took Marriela and Cody into see the pediatrician mainly because Marriela continues to complain of right ear pain. I had Cody's ears checked only because I was going out of town and he has a tendency to pull on them all the time. I figured Marriela had a bad infection. Imagine my surprise when the doctor told me that Marriela, while she still had fluid behind her ear drum, did not have any sign of an infection. . . BUT Cody's left ear was a mess! He had no fever and no real sign of any pain at all. Sigh. So that is three ear infections and one pnemonia in less than three months. I am glad we are seeing the immunology doc this week on Thursday. Marriela also earned herself a referral back to her ENT for possible placement of a tube in that ear that doesn't seem to want to drain.
Tray and Joshua had a baseball game today. Tray apparently was very dissapointed in his batting and threw the bat down twice. We are working on him not setting such high expectations and the working hard is better and doing well most of the time, is better than hitting one great hit and then nothing. . . don't think he buys it yet. Joshua did get a hit but then apparently twisted his ankle rounding the base so he wasn't inclined to finish out the run. LOL
Well, need to get to sleep so I can get back over to Nettie bright and early in the morning.
In my thoughts and prayers,
Renee
Monday, May 15, 2006 8:18 PM CDT
Happy Mothers Day to all the women out there!
It was a busy weekend for us, as we celebrated Cody's baptism on Sunday. It was also my birthday so we had a nice Mother's Day, Birthday, Baptism party. LOL It was so nice to have all of our family there to share the moment. Our pastor gave a wonderful sermon and I really want to share with you a bit of the "meaning".
She (we're Lutheran and yes, we have a female pastor) felt that "mother's day" was meant for EVERYONE! Every person that has ever shown ANY motherly love towards another human being was deserving of recognition. I couldn't agree more. I know many people that are NOT mothers, yet do so much for children and others in such a loving, "motherly" manner. Therefore, I want to be sure to let anyone and everyone that has ever helped our family, Mothers, fathers, family, friends, doctors, nurses, social workers, case managers, teachers, therapists, neighbors, the list is endless. . . we extend to you. . . a HAPPY MOTHER'S DAY thank you. Our family exists and thrives only with the love and support of so many other people. We know this and are humbled by it.
As for the family:
Well, Cody is baptized! He was a little wild man during the ceremony and REALLY wanted to dive into the baptismal font with all of the water! LOL He was wonderful though and didn't put up any fuss at for the entire church service. However, he had a very bad case of the hiccups during his ceremony and when the pastor took him to show him to the congregation, he kept hiccuping loudly into her mic, the whole place was giggling. LOL He wore Joshua's baptism outfit from 10 years ago!! I am so glad I am a pack rat and save EVERYTHING! LOL Health wise he is doing well. Has finished his antibiotic for his ear infection. He sees Immunology next week and early next month he is seeing GI for his reflux and constipation issues. He can now pull to stand and has mastered crawling. . . and without coincidence, my stress headaches are back full force!
Joshua is doing great!
Tray is doing great! (a little Tray/Marriela moment. . . Tray asked me "If you say 'I'm not telling.' is that a lie?" I asked him for an example. He said his cousin, Kali asked him "What is 8x8?" Tray didn't want her to know that he didn't know the answer so he decided to plead the fifth with "I'm not telling." Kali annouced that he must not know the answer then, to which Tray objected and said that he simply didn't want to answer. (I don't think she bought it.) Anyways. . . tonight he was distressed and wanted to know if what he did was lying. I told him that it was ok if he didn't know the answer. She is older and in a higher grade. However, he knew a lot more than Marriela and other children in grades below him. I said ask Marriela what 2+2 is. So Tray says to Marriela. "What is 2+2 Marriela?" She responded promptly with, "Thank you."
Not only did Tray feel immensly better that he was smarter than Marriela, he got one heck of a laugh out of her answer. :-)
Marriela is doing great!
Nettie is doing great! She's only one week away from her surgery now! She's already trying to pack for a one night stay using a GIANT suitcase. I keep "unpacking" her stuff and telling her that we will pack in small bags and only need a little bit of stuff. She gets soooo mad when she can't "prepare" ahead of time, but this is a bit to early.
I had a wonderful birthday. Peter got me a new upgrade on my phone as well as a bluetooth ear set so I don't get pulled over for talking on the phone. (in NY it's illegal to talk on a cell phone while driving). I lOVE the new phone and ear set!
He is also getting me a rescue pug named Shea from the Pug Rescue Society near our home. She is one year old and 14 pounds. I thought that Tray would really love a new dog and Shea would "grow" up with Marriela and Cody. I can't wait to meet her!
Well, that's it for tonight.
Take Care and God Bless,
Renee
Tuesday, May 9, 2006 8:28 AM CDT
Hi everyone!
Hope you are all enjoying the wonderful spring weather that has finally arrived and appears to be staying for a while! YEAH!!
We are preparing for a big weekend this weekend. It's Cody's baptisim as well as Mother's day, as well as my birthday! LOL We believe in killing several birds with one stone here. Saves on parties as well as as travel trying to get around to see everyone! LOL
As for the kids, Cody has yet, another ear infection. I had to take him into the Urgent Care center on Sunday because he had been running a fever since Friday and pulling on his ear like crazy. We thought with Tylenol we could make it until Monday to see our own doctor, but on Sunday he woke up screaming and pulling on the other ear as well. So I thought it wise to get treatment sooner than later for the poor baby. He still seems to be in pain, but his fever is gone, so I think he's on the mend. He also went for his VCUG test. However, it was a no-go. I won't go into the details but let's just say, they couldn't get the catheter in because things were to tight down there. Now we have to decide if we go and have a circumcision or do a full MRI under sedation to rule out the tethered cord. Today he is 8 months old already!! I can't believe it! He is now crawling (not fluently, but manages to get from one place to another much to quickly for my taste!) and can pull himself up to stand. He has also mastered saying "hi and bye" by waving his hand. It is sooo cute to see him bounce his little arm up and down at people waving to him.
Joshua is doing very well. He and Tray have their first baseball game tonight. They're both really liking baseball! Joshua had his spring concert/talent show last week. He and several other kids learned to sign a song. They signed "True Colors" by Cyndi Lauper and it was beautiful. The other kids really caught onto the signing and Joshua, though awkward, did a fantastic job. I was crying as I watched my baby be part of something that just 3 months ago would have never been. We have now gone down on his one med in the morning as well so we will see if we can continue to wean him off of this drug as well. I signed Joshua up to attend a camp for kids with epilepsy. He agreed that he would like to go. That will be his second over night camp this summer! Go Joshua!
Tray is STILL into bugs. He currently has a strange looking insect-like thing in a cup out back that he has named, Jacob. Jacob likes leaves, is drinking the water Tray is giving it and for some reason, beyond my comprehension, is still alive. Tray was also rewarded at school because he stepped in and helped a classmate that was being teased by several other kids in the class. The Gym teacher witnessed the whole thing and was absolutely floored that Tray faced several boys who were throwing a ball at a little girl in their class, and told them that "They were being mean that they wouldn't want anyone to treat them like that." The little girl hugged him and the teacher rewarded him with an icecream from the school cafeteria as well as gave him a letter of thanks. He was so proud. Peter and I were as well!! He has such an unbelievably big heart! Tray will also be attending two overnight camps this summer as well. He is going to Camp Hope with Heart for kids with severe cardiac issues as well as the Hole in the Woods Camp that all three go to. He's also going to go to Jr. Camp Good Days, but that is only a 4 day Day Camp.
Marriela is doing well. I am taking her into see Dr. Jones today because she has been complaining that her ear hurts at night. I don't know if I believe her but she isn't sleeping well, so I think it's worth investigating. Peter and I are trying hard to be very consistent with our handleing of her behaviors and it seems to be working. She is much calmer and when she isn't, she is upstairs in her room until she is calm enough to join the family again. Overall she is doing great though. They are almost done with her testing and we should be meeting next week or so to go over it all. She is loving the spring weather because it means OUTDOORS time!
Nettie is also doing very well. She is going to be Cody's GodSister... isn't that awesome. She came up with the idea all by herself and volunteered for the role. We took her up on it. I'm going today to pick her out something special to thank her for being such a wonderful big sister to her little brother. Her surgery is only a couple of weeks away!
Well, that's it for now. I continue with PT and have seen some benefits now that we slowed the pace down considerably. I feel like I'm only 18 in my head, but my body is telling me I'm 80. I need to bring the two a bit closer together I think. LOL
In our thoughts and prayers,
Renee
Friday, April 28, 2006 2:57 PM CDT
Hi everyone again,
Well, as always things are moving along here at the Curkendall’s.
Cody got progressively worse after updating last time. So off to the doctors we went. He was wheezing badly and his throat was very raw. She feels that his reflux has gotten quite severe and is “splashing” up and into is lungs causing the constant wheezing and croup problems. In addition, it’s going high enough that it is irritating his nasal passages thus the reason for all of the nasal crap he has all the time. So now he is on Prevacid and Reglan (no more Zantac). In addition, I mentioned that he still can’t “poop” on his own. She is now referring him to GI.
Today he had an appointment with the Pediatric Surgeon to follow-up on his hydrocel and “pooing” issue. When the surgeon went to remove his diaper to check things, Cody was peeing. Cute right? Well, apparently what I thought was cute. . . A slow dribble of urine that takes a while to finish (who knew, I don’t see him going in his diaper LOL) isn’t “normal”. This type of urine release, along with the inability to have a bowel movement are signs of a tethered cord. I know, we had this checked out already, didn’t we! Well, the ultrasound is not a highly reliable test for this problem. So first, next week he has to have a VCUG. In other words, they are going to catheterize him, fill his bladder with dyed fluid, and then remove the catheter. We wait for him to urinate and then take x-rays to see how much (if any) urine remains in the bladder. They also check the force of urination. Sounds like fun for a 7 month old doesn’t it. NOT!! If that is abnormal at all, then we will have to have him get a full spinal MRI to see if he does in fact have a tethered cord. I was soooo frustrated leaving yet another doctor’s appointment with my baby and finding yet another thing that needs to be “checked out”. The surgeon did assure me that in MOST cases it doesn’t turn out to be anything. However, if it is a tethered cord it can cause progressive neurological damage (right now, if it is a tethered cord, then he already has nerve damage that feed into the bowel and bladder) including the ability to walk and such. So it’s important to rule it out if it is there. To fix it, Cody will need a surgery on his spine to release the spinal cord from whatever is holding it from growing. Not at all what I wanted to hear!
Still no word from the immunologist.
We did hear back from the ENT and there wasn’t the best of news there either. Apparently the scans showed that Trayvon’s skull sutures are still open. Therefore, it is his brain that is very small and not the skull that is the cause of his microcephaly. What this means for Tray, no one knows. She wants him to follow-up with a neurosurgeon, but I really don’t see the reason why since we already saw one and he had nothing to offer.
Joshua gets his shot today.
This Sunday Trayvon is going to be in a fashion show to raise money for Make A Wish. He got to pick out whatever outfit he wanted to wear from JC Penney’s. He chose a cute matching short set complete with matching flip flops (this is actually the reason he chose the outfit). LOL I don’t even think he has ever wore a pair of flip flops. I personally hate the thing between my toes, but we’ll see what he thinks. He and Joshua are also going to be in the Make A Wish Calendar next year!!! They are going to do a page together as very few families have more than one wish child. Poor Nettie is sad she doesn’t get to be in it. Her wish was through Starlight Foundation and not MAW so she can’t be in the calendar. I feel bad that she gets left out of many things. I am excited to see how Trayvon does going down the aisle in front of those people!
Well, that’s it for now. Got to take Joshua to the doctors for his shot now.
Take Care and God Bless,
Renee
Monday, April 24, 2006 7:29 PM CDT
Hi everyone!
It’s rainy and dreary here after a wonderful stretch of beautiful weather. It was so nice to get out and get some yard work done. We have some grape vines from He#@ that just try to take over EVERYTHING each year. So every spring, while they’re still brown and dry, we have to go out the “thin” them out so they don’t choke out the bushes and trees (and the new pool!). We also cleared out a part of the yard that hadn’t seen humans in several years and now we’re going to put a new swingset (someday anyway) in that spot. LOL
Last week Peter lost a good friend to breast cancer. She was the true epitome of grace under fire. She continued to work (almost full time) right up until just 2 weeks ago. She had cancer everywhere, yet it NEVER stopped her from living life. Peter loved going out to lunch with her and her some of her “gang”. They are a wonderfully caring group of women and Peter looked forward to their lunches regularly.
Paula you will be greatly missed by many people. Thank you for teaching us how to really “live” life without focusing on our problems. In our thoughts and prayers, Peter, Renee and the gang.
I have also just read that another baby has passed following a bone marrow transplant. I have been following this family for sometime as their baby is only a month younger than Cody. In his time on earth, his parents never had the joy of seeing him roll over, eat baby food, breastfeed without vomiting, smile his toothless grin at his big brother’s antics, trying on all of the new baby clothes from their baby shower, those first tenuous steps, first anything. My heart is heavy. Please stop by and offer this family all the support you can. Thanks.
http://www.caringbridge.org/al/micah/
As for our kids, they’re all well at this time.
Joshua had his first small seizure in over 2 weeks yesterday, but we are also weaning down one more med, so maybe that just needs to go a bit slower. He told us today that he is going to be in the Talent Show at school with some other kids. They are going to sign a song!! This is definitely a more outgoing side to Joshua than we have seen in a long, long time!!
Cody has yet another stuffy/runny nose and some congestion. We’re keeping up with the nebulizer treatments in hopes of preventing any further problems. Otherwise he’s doing great! He’s now able to go from lying down to sitting (did it today for the first time!) and can “tall kneel” holding on to something. He can also pull to stand and is almost ready to crawl! It’s unbelievable how much a baby can change in just a matter of a week or so! Sigh. I’m not ready for him to be on the go, I’m tired!!! LOL We still haven’t heard back yet from Immunology as to when our appointment will be. I am not worried though. He’s doing well right now.
Marriela is doing well. We were hoping that she would get to see the local Developmental Pediatrician for assistance in what kind of treatment would be best for her ADHD. However, they called our Pediatrician and said that without a concrete diagnosis they wouldn’t see her. Well. . . That’s what we wanted them for! So now we’re going to go out to Strong Memorial for yet another doctor. Very frustrating.
The ENT called and said she is still reviewing Trayvon’s scans to see if there is any indication as to whether or not she can help. But she’s been “reviewing” now for over 3 weeks and told us we would hear back from her in only one week at the appointment. Again, very frustrating. He is now over 60 pounds if you can believe that! He’s gained 20 pounds since the summer and grown 2 shoe sizes!
Nettie is doing well and counting down again until her surgery. I found another camp for her to go to this summer and she is very excited about it. It’s for Teens with her specific set of issues. It’s down by NYC so she should be in with a very “hip-hoppy” kind of crowd and that thrilled her to pieces. Since this is the last year she can attend Camp Hole in the Woods, she is happy to know that she can go to this one until she is 19 (giving her 4 years there counting this summer). She is also going to try the Camp Good Days and Special Times camp again. She hasn’t been in over 5 years because of a very bad experience she had there one summer. Apparently there was a young woman (volunteering as a counselor) who had been treated for bone cancer and it necessitated the removal her entire arm including her shoulder socket. For those who have never seen a complete amputation of a shoulder, it can be an eye-opener. Well, this young woman took to Nettie but Nettie didn’t take to her. According to staff, she pretty much “stalked” Annette trying to befriend her, even though Annette was clearly uncomfortable with both her demeanor as well as her physical appearance (apparently she wore a lot of tank tops and the surgical scars were very noticeable). Since that week, Nettie has REFUSED to talk about going again. I think I finally have her convinced that the young woman is no longer there (she was not allowed to return since she didn’t take directions well and failed to follow instructions from supervising counselors). So it is possible Nettie may be going to 3 different camps this summer! Good for her!
I dropped out of PT, it was hurting me more than it was helping me. Maybe I’m just a whimp, but I was living on Motrin and hot showers just to get my muscles loose enough to move. I guess I should call them to let them know I’m not coming anymore! LOL
Peter is doing great and should be finishing up school this spring! Yeah Peter!
Well, that’s it for now.
Take Care and God Bless,
Renee
Monday, April 24, 2006 7:29 PM CDT
Hi everyone!
It’s rainy and dreary here after a wonderful stretch of beautiful weather. It was so nice to get out and get some yard work done. We have some grape vines from He#@ that just try to take over EVERYTHING each year. So every spring, while they’re still brown and dry, we have to go out the “thin” them out so they don’t choke out the bushes and trees (and the new pool!). We also cleared out a part of the yard that hadn’t seen humans in several years and now we’re going to put a new swingset (someday anyway) in that spot. LOL
Last week Peter lost a good friend to breast cancer. She was the true epitome of grace under fire. She continued to work (almost full time) right up until just 2 weeks ago. She had cancer everywhere, yet it NEVER stopped her from living life. Peter loved going out to lunch with her and her some of her “gang”. They are a wonderfully caring group of women and Peter looked forward to their lunches regularly.
Paula you will be greatly missed by many people. Thank you for teaching us how to really “live” life without focusing on our problems. In our thoughts and prayers, Peter, Renee and the gang.
I have also just read that another baby has passed following a bone marrow transplant. I have been following this family for sometime as their baby is only a month younger than Cody. In his time on earth, his parents never had the joy of seeing him roll over, eat baby food, breastfeed without vomiting, smile his toothless grin at his big brother’s antics, trying on all of the new baby clothes from their baby shower, those first tenuous steps, first anything. My heart is heavy. Please stop by and offer this family all the support you can. Thanks.
http://www.caringbridge.org/al/micah/
As for our kids, they’re all well at this time.
Joshua had his first small seizure in over 2 weeks yesterday, but we are also weaning down one more med, so maybe that just needs to go a bit slower. He told us today that he is going to be in the Talent Show at school with some other kids. They are going to sign a song!! This is definitely a more outgoing side to Joshua than we have seen in a long, long time!!
Cody has yet another stuffy/runny nose and some congestion. We’re keeping up with the nebulizer treatments in hopes of preventing any further problems. Otherwise he’s doing great! He’s now able to go from lying down to sitting (did it today for the first time!) and can “tall kneel” holding on to something. He can also pull to stand and is almost ready to crawl! It’s unbelievable how much a baby can change in just a matter of a week or so! Sigh. I’m not ready for him to be on the go, I’m tired!!! LOL We still haven’t heard back yet from Immunology as to when our appointment will be. I am not worried though. He’s doing well right now.
Marriela is doing well. We were hoping that she would get to see the local Developmental Pediatrician for assistance in what kind of treatment would be best for her ADHD. However, they called our Pediatrician and said that without a concrete diagnosis they wouldn’t see her. Well. . . That’s what we wanted them for! So now we’re going to go out to Strong Memorial for yet another doctor. Very frustrating.
The ENT called and said she is still reviewing Trayvon’s scans to see if there is any indication as to whether or not she can help. But she’s been “reviewing” now for over 3 weeks and told us we would hear back from her in only one week at the appointment. Again, very frustrating. He is now over 60 pounds if you can believe that! He’s gained 20 pounds since the summer and grown 2 shoe sizes!
Nettie is doing well and counting down again until her surgery. I found another camp for her to go to this summer and she is very excited about it. It’s for Teens with her specific set of issues. It’s down by NYC so she should be in with a very “hip-hoppy” kind of crowd and that thrilled her to pieces. Since this is the last year she can attend Camp Hole in the Woods, she is happy to know that she can go to this one until she is 19 (giving her 4 years there counting this summer). She is also going to try the Camp Good Days and Special Times camp again. She hasn’t been in over 5 years because of a very bad experience she had there one summer. Apparently there was a young woman (volunteering as a counselor) who had been treated for bone cancer and it necessitated the removal her entire arm including her shoulder socket. For those who have never seen a complete amputation of a shoulder, it can be an eye-opener. Well, this young woman took to Nettie but Nettie didn’t take to her. According to staff, she pretty much “stalked” Annette trying to befriend her, even though Annette was clearly uncomfortable with both her demeanor as well as her physical appearance (apparently she wore a lot of tank tops and the surgical scars were very noticeable). Since that week, Nettie has REFUSED to talk about going again. I think I finally have her convinced that the young woman is no longer there (she was not allowed to return since she didn’t take directions well and failed to follow instructions from supervising counselors). So it is possible Nettie may be going to 3 different camps this summer! Good for her!
I dropped out of PT, it was hurting me more than it was helping me. Maybe I’m just a whimp, but I was living on Motrin and hot showers just to get my muscles loose enough to move. I guess I should call them to let them know I’m not coming anymore! LOL
Peter is doing great and should be finishing up school this spring! Yeah Peter!
Well, that’s it for now.
Take Care and God Bless,
Renee
Monday, April 17, 2006 10:07 PM CDT
Hi everyone!
I hope this finds everyone out there happy and healthy. We had a very nice Easter this year. We went down and spent Saturday with Peter’s mom and dad and had a nice dinner with them. It was wonderful seeing his mom feeling so good finally, after all she has been through. She starts her next round of chemo tomorrow so hopefully she’ll be all ready to come up for Cody’s baptism on Mother’s Day!
Easter Sunday my father came over for breakfast and then Peter’s sister, Brenda and her family came over after church. They stayed for dinner and the kids had an absolute BLAST all day!! I actually got to sit down and eat and TALK with the grown-ups instead of dealing with kids all day. The weather was wonderful and the kids all played so well together (this really helps LOL).
As for the kids. . .
Cody is doing much better. He is still having difficulty “pooing” and this is going to have to be addressed soon. However, his pneumonia cleared up after about 3 days he started to finally sound better breathing. He went in for his recheck after the ER visit and was still wheezing all over so now we do a steroid nebulizer treatment each day and this really has made a big difference in his congestion. I had e-mailed Joshua’s immunologist asking him about the chances that Cody and Joshua have a “genetic” link that predisposes them to immune issues and . . . Cancer. I was really hoping to hear back from them that I was silly and that there was no reason to think that this is a possibility. Instead, they wrote back that they want to see him in the clinic. I am sure it is still a silly idea, but at least they will be following him closely, something Joshua didn’t get until after he had suffered for years.
Speaking of Joshua, his labs all came back normal and she never called me to tell me that he had Mono, so I guess that was negative too. However, he continues to have “strange” issues. IE. Frequent urination, but little actual urine, lots of urges but not successful in going. He is also constipated again and has another bellyache tonight. I am now wondering if one of his new drugs (allergy or seizure) can cause some of these. I have a call into neurology and will pick their brain first. If no luck, I’ll take him back into the pediatrician.
Tray is doing very well. Eating like a horse and gaining at an astronomical pace! LOL This is the kid we almost put a G-tube into and now I have to tell him to STOP eating sometimes! Amazing how fast things can change in this house.
Marriela is doing great. She goes back on Wednesday for a recheck of her ear to be sure that the pesky ear infection is finally gone for good. The Claritin she is now on is like a God Send for her nose issues. Anyone who knows Marriela is familiar with the perpetual “white” crusties under her nose from its constant running. I am thrilled to report that she is white-crusty-free, as well as not having to blow her nose in over 3 days! Hopefully this will also help to control the ear infections and asthma as we move into pollen and mold season.
Nettie is doing great. She is so much like a typical teenager in some ways that it’s hard to figure out how to talk to her about things! She loves to wear make-up, talk on her cell phone (or text message - which costs a small fortune!), and hangout in her room AWAY from the other kids. But then she is so much like a young child in other areas like. . . Money. She has no idea how much things cost or how to count money. These are skills that she has been working on for over 4 years and still have yet to “sink” in. It’s times like that, that you get frustrated at trying to figure out what she is understanding and not understanding.
My PT must be wondering what in the heck happened to me. I had an appointment last Monday, but actually was stuck at another appt so wasn’t able to make it. But I was also sore as heck and didn’t really want to go back until I was “less sore”. Well I guess more than a week later, I should get back there. LOL
Well, that’s it for now!
Take Care and God Bless,
Renee
Monday, April 10, 2006 5:57 PM CDT
**************************** NEW UPDATE***************************************
Hi everyone,
Just wanted to update you and let you know how things are moving along here in Curkendall land! Cody and Joshua went to the doctor today. Cody was for a follow-up ER visit. He is no longer “acutely” ill, but he has severe wheezing all over. So now he is on twice a day inhaled steroids via the nebulizer to see if we can’t get some of his chest stuff cleared up. THEN we will look into the why’s and how’s of his constant lung stuff.
As for Joshua, well. . . He woke up looking like crap. He has been slower to get out of bed the last couple of weeks and he looks run down. Today he was having trouble keeping his eyes open at all while sitting and eating breakfast (VERY UNUSUAL for Joshua). He was also shaking badly. I laid him down on the couch and told him to take a nap because that’s what vacations are for! He did fall asleep and then woke up to vomit. I figured he had a stomache bug. I had to take Cody to the Doctor’s for his appointment anyways so figured, I’ll just bring Joshua in as well (just to be checked - since I thought it was a simple stomach bug). However, after being pretty much comatose on the couch and vomiting 3 times, he pops up and is CURED of his stomach flu. This actually worried me a lot more than if he just acted sick all day. So the doctor asked if we wanted a new MRI and I said “No, we just had one and just one day of craziness doesn’t mean that there is anything to worry about.” She agreed to wait and see if it happens again. In the mean time she drew labs (he still looked pale and has dark circles under his eyes, so he clearly wasn’t 100%, even though he says he feels fine now). I should hear back tonight as to what the counts are and if he has Mono. This is one of the things she was thinking could cause some of the symptoms. So I was glad I made him tag along even though he now feels fine.
Nettie is now ok with waiting for her surgery because she realized that now she will miss a bunch of school (that’s the reason I had scheduled it during Spring Break) LOL.
Tray is doing great and is excited baseball has started up again. Joshua is going to actually be on Tray’s team (you have to “try out” at Joshua’s level and he isn’t anywhere near ready for that type of playing). If he doesn’t feel like playing (the sun is very hard on him due to one of his meds) he can just help the coach and be a “manager”. He doesn’t seem to be aware at all that the kids are younger than him and he is happy as punch to be out there playing with them. I’m ok with that.
Marriela is doing great as well. I will be talking with the doctor on starting her on some ADHD meds before the summer is over so we can see how she does on them before the new school year starts. But other than that, she is doing very, very well.
I’m still sorry as Heck from my PT and me and Motrin are the best of friends right now!
Ok, that’s enough for today.
OHHHHH, wait a minute. I FORGOT SOMETHING!! Not everything that goes awry in our house has to do with medical stuff. LOL
The other night Peter asked me to bring home a chocolate cake mix to make a cake for after dinner. I did so happily and was looking forward to a nice peice of chocolat cake. While I was upstairs giving Marriela and Trayvon their baths, Peter and Joshua were downstairs having a loving father/son moment, making a cake together. I came down just as the batter was going in the pan and took one of the beaters to lick (one of my favorite things in the world). I took a couple of licks and discovered some strange green things all over the beater. When I inquired into the nature of the green items, Peter explained to me that there was no more olive oil so he used the "basting" oil. People, "basting" oil is made of olive oil, GARLIC and other herbs. As the cake started to bake a nauseating smell of chocolate-garlic begin to fill the house and I couldn't even come down the stairs. What was worse is that Peter and the boys actually ate this chocolate/garlic atrocity!!! Tray stated afterwards that he had a "bad taste in his mouth and wanted a drink." I'll bet you had a a bad taste baby!! First thing the next day I dumped that thing in the garbage and went straight out and bought some new cooking oil! LOL Only Peter could have improvised with "basting" oil.
Now I'm done LOL.
Take Care and God Bless,
Renee
*************************************************************************************
Hi everyone!
It’s raining and dreary here. But this week is suppose to be much nicer AND warmer! I hope so!
Let’s see where do we begin.
Nettie.
Her surgery was postponed by the surgeon. She was devastated. He has an emergency surgery on Tuesday so she had to be moved to May 23rd. She sat and cried for about a half hour before I finally had the opportunity to explain what “emergency” surgery probably meant (taking care of another child who really needed a big surgery right away). This seemed to comfort her. . . In that he didn’t cancel just to cancel, but he really did have a good reason. Then we got out the calendar and I numbered the days in reverse for her so she can see each day how many more she has left until 5/23. That also seemed to help ease her fears that it was very, very far away. At dinner she thanked me for helping her feel better. I was greatly saddened that I even had to make her feel better about missing a surgery that she shouldn’t have to have on a child that has been through more than anyone could imagine. Yet there she was, thanking me. It made my heart break.
On a good note. Nettie had an MRI of her entire spine (that was NO EASY feat either for her!) and it was totally normal. So her back pain is muscle related and with some specialized PT to target this area she should start feeling better soon. She also just saw the dentist and that, likewise, was a great visit. No cavities at all and her teeth looked great. She only has 5 more visits with this dentist before she has to move onto an adult one. L
Ok, who’s next. . . Cody. He is quite sick right now and spent all day yesterday in the ER. I had him and Marriela back at the doctor’s on Wednesday to check on the status of their ear infections and to see if their chests sounded better. I already KNEW that Cody was wheezing, I had to give him a nebulizer in the morning. And Marriela had said her “ear had an ouchie” the night before. Well, the doctor checks them and Marriela’s ear is still very infected, but her lungs sound wonderful. So onto a different antibiotic for another 10 days. Cody is in fact, wheezing a lot. BUT his ear is also still infected (2 rounds of antibiotics later). So she tells me to give him his regular nebulizer treatments and they are going to do another round of the same antibiotic he was on because, although it is still infected, it looks a lot better than it did.
Wednesday night - Cody wakes up burning up. 103.5 degrees. He’s having a lot of trouble breathing and he is very uncomfortable. I give him Tylenol and another breathing treatment. He finally falls asleep around 5am. I call the doctor, they tell me to wait another 24 hours to let the antibiotic kick in. I wait. . . By 1:00 in the afternoon, he is burning up again now the breathing treatments aren’t helping. I call the doctor and tell her he’s going to the ER. There he has a temp of 105 degrees ON TYLENOL! He is retracting (pulling very hard with his muscles to breath) and breathing very fast. It takes us over an hour to get a room. Then it’s an x-ray, bloodwork, an IV, a urine catheterization (which didn’t work so he had to wear a little pee bag), and a nasal wash to test for RSV and the flu. I couldn’t help but think “Why is this happening again to one of my babies!!!!” He’s only 6 months old and already had 3 ER visits on 2 antibiotics and gets more breathing treatments than anyone of the kids did at the same age! In the end, he had a positive x-ray for pneumonia. But his labs looked good, he was negative for RSV and the flu and he didn’t require oxygen. They felt that if I would watch him closely at home, then they would rather not admit him. I was fine with this, as the hospital is full of flu and RSV right now. He is on another antibiotic and every 2 hour breathing treatments along with the Motrin and Tylenol. That was yesterday and he has yet to break the fever. He is running 103.5 temp as we speak. I’m hoping the Motrin will kick in soon. But his breathing does seem a BIT better today.
Joshua and Trayvon are doing very well. School is going great for both right now. I just met with Trayvon’s teachers and, and though he is very far behind, he works his butt off in school and has made really nice progress. We are seriously considering holding him back this year so he can try to catch up a bit more (he’s very young with a November birthday AND he is reading at the early to mid 1st grade. So if he stayed back he may in fact be able to catch up with the second graders and that would be a huge boost to his 3rd grade year).
I haven’t heard anything back from the ENT who was going to order the special CT scan of Tray’s skull after she reviewed his old scans. I’ll call next week.
I started PT for some really sore joints. I found out that you can be weak everywhere and yet still be strong enough to lift your kids and groceries and wheelchairs and lots of other “mommy” stuff. Yet when he asked me to hold my arms up while he pushed on them, I was shocked to see I couldn’t!! LOL Same for my legs, back, etc. My PT, I swear, goes home and thinks up the most vile and difficult exercises he can just to watch me suffer. I am sore as H#$% after each treatment. Hopefully my body will see this as excersise and I’ll lose a bit of weight as a reward for doing it. Hehehehe. Actually, I really do hope this helps my joints, I feel like I have ninety year old joints in the body of an 18. . . Ok, 20 year old. How old am I really you ask. . . Let’s just say, I’m older than you might think.
Well, that’s it for now! Prayers and thoughts to all of our cyber friends currently finding themselves in some sort of struggle or another. Too many kids going though too much suffering.
Take Care and God Bless,
Renee
Friday, April 7, 2006 6:50 PM CDT
Hi everyone!
It’s raining and dreary here. But this week is suppose to be much nicer AND warmer! I hope so!
Let’s see where do we begin.
Nettie.
Her surgery was postponed by the surgeon. She was devastated. He has an emergency surgery on Tuesday so she had to be moved to May 23rd. She sat and cried for about a half hour before I finally had the opportunity to explain what “emergency” surgery probably meant (taking care of another child who really needed a big surgery right away). This seemed to comfort her. . . In that he didn’t cancel just to cancel, but he really did have a good reason. Then we got out the calendar and I numbered the days in reverse for her so she can see each day how many more she has left until 5/23. That also seemed to help ease her fears that it was very, very far away. At dinner she thanked me for helping her feel better. I was greatly saddened that I even had to make her feel better about missing a surgery that she shouldn’t have to have on a child that has been through more than anyone could imagine. Yet there she was, thanking me. It made my heart break.
On a good note. Nettie had an MRI of her entire spine (that was NO EASY feat either for her!) and it was totally normal. So her back pain is muscle related and with some specialized PT to target this area she should start feeling better soon. She also just saw the dentist and that, likewise, was a great visit. No cavities at all and her teeth looked great. She only has 5 more visits with this dentist before she has to move onto an adult one. L
Ok, who’s next. . . Cody. He is quite sick right now and spent all day yesterday in the ER. I had him and Marriela back at the doctor’s on Wednesday to check on the status of their ear infections and to see if their chests sounded better. I already KNEW that Cody was wheezing, I had to give him a nebulizer in the morning. And Marriela had said her “ear had an ouchie” the night before. Well, the doctor checks them and Marriela’s ear is still very infected, but her lungs sound wonderful. So onto a different antibiotic for another 10 days. Cody is in fact, wheezing a lot. BUT his ear is also still infected (2 rounds of antibiotics later). So she tells me to give him his regular nebulizer treatments and they are going to do another round of the same antibiotic he was on because, although it is still infected, it looks a lot better than it did.
Wednesday night - Cody wakes up burning up. 103.5 degrees. He’s having a lot of trouble breathing and he is very uncomfortable. I give him Tylenol and another breathing treatment. He finally falls asleep around 5am. I call the doctor, they tell me to wait another 24 hours to let the antibiotic kick in. I wait. . . By 1:00 in the afternoon, he is burning up again now the breathing treatments aren’t helping. I call the doctor and tell her he’s going to the ER. There he has a temp of 105 degrees ON TYLENOL! He is retracting (pulling very hard with his muscles to breath) and breathing very fast. It takes us over an hour to get a room. Then it’s an x-ray, bloodwork, an IV, a urine catheterization (which didn’t work so he had to wear a little pee bag), and a nasal wash to test for RSV and the flu. I couldn’t help but think “Why is this happening again to one of my babies!!!!” He’s only 6 months old and already had 3 ER visits on 2 antibiotics and gets more breathing treatments than anyone of the kids did at the same age! In the end, he had a positive x-ray for pneumonia. But his labs looked good, he was negative for RSV and the flu and he didn’t require oxygen. They felt that if I would watch him closely at home, then they would rather not admit him. I was fine with this, as the hospital is full of flu and RSV right now. He is on another antibiotic and every 2 hour breathing treatments along with the Motrin and Tylenol. That was yesterday and he has yet to break the fever. He is running 103.5 temp as we speak. I’m hoping the Motrin will kick in soon. But his breathing does seem a BIT better today.
Joshua and Trayvon are doing very well. School is going great for both right now. I just met with Trayvon’s teachers and, and though he is very far behind, he works his butt off in school and has made really nice progress. We are seriously considering holding him back this year so he can try to catch up a bit more (he’s very young with a November birthday AND he is reading at the early to mid 1st grade. So if he stayed back he may in fact be able to catch up with the second graders and that would be a huge boost to his 3rd grade year).
I haven’t heard anything back from the ENT who was going to order the special CT scan of Tray’s skull after she reviewed his old scans. I’ll call next week.
I started PT for some really sore joints. I found out that you can be weak everywhere and yet still be strong enough to lift your kids and groceries and wheelchairs and lots of other “mommy” stuff. Yet when he asked me to hold my arms up while he pushed on them, I was shocked to see I couldn’t!! LOL Same for my legs, back, etc. My PT, I swear, goes home and thinks up the most vile and difficult exercises he can just to watch me suffer. I am sore as H#$% after each treatment. Hopefully my body will see this as excersise and I’ll lose a bit of weight as a reward for doing it. Hehehehe. Actually, I really do hope this helps my joints, I feel like I have ninety year old joints in the body of an 18. . . Ok, 20 year old. How old am I really you ask. . . Let’s just say, I’m older than you might think.
Well, that’s it for now! Prayers and thoughts to all of our cyber friends currently finding themselves in some sort of struggle or another. Too many kids going though too much suffering.
Take Care and God Bless,
Renee
Friday, March 31, 2006 1:05 PM CST
Hi everyone!
Busy as usual. Still haven’t worked out the PO box issue. They insist that we didn’t pay, but I have the reciept right in front of me here. So now I have to take it up with the supervisor who isn’t in on some days and we’ve been very busy with doctor’s appointments and stuff.
As for the kids, they’re doing well. Cody and Marriela have both made huge improvements and are almost done with their antibiotics. Cody sounds good again (very little congestion and NO coughing right now). Marriela is still wheezing but mostly when she runs around and plays hard, she clears right up with her nebulizer treatments. Hopefully with Spring here and finally wonderful sunshine and warm weather, we should see a nice reprieve for Cody and Marriela.
Joshua and Trayvon had their physicals for camp yesterday. Joshua has been coughing a lot and has a bad runny nose. . . His allergies are back. So he is now on Singulaire and Nasonex as well to give him some reliefe and so far it seems to be working. He is waking up sounding much better and he isn’t rubbing his nose incessantly! Trayvon looks good and has grown. . . Drum Roll please. . . 3 ½ inches since last year!!! Can you believe that!? He is having some trouble with fluid retention again, so we are doing extra doses of Lasix for the next few days. He will have an EKG and bloodwork done on Monday to be sure that the extra diuretics didn’t dry him out too much.
Nettie is officially 16 YEARS OLD!!! I can’t believe my baby is 16! Where in the world does time go??? She is having friends meet her at the mall tomorrow to see a movie and have pizza (something typical teens take for granted but it’s a treat for her). Nettie has an MRI today of her entire spine to see if there is a medical reason for her constant back pain and her surgery is less than 2 weeks away!!
I can remember vividly the doctors telling us that she is only going to be with us a short while longer., so we better take her Make A Wish trip and then when we come home, focus some attention on just being a family and stop pushing so hard for medical intervention. These were well meaning doctors, they really were. But they didn’t know my daughter like I did even though she was “only” our foster child at the time and had only been with us for less than 18 months, I KNEW Annette and her tenacity. I KNEW she would give me warning if and when the time came for her to become an angel. I just KNEW it and nothing the doctors said could convince me otherwise. They talked us into a DNR and I withdrew it in the ER.
Nettie has no memory of her tenuous struggle for life for her first 6 years. She only vaguely remembers living in NYC at all. She doesn’t remember being in the PICU more times than I can count, or living on the 8th floor for over 3 months with me right there (pregnant and all) the summer of 1995 as she tried to fight off a systemic infection taking over her body. She doesn’t remember the terrible surgeries and central line placements and blood gases, nuclear scans, IV lines that never lasted more than a few hours, the desperate look on the doctor’s faces as she turned blue and went into shock (several times) or the 100s of other procedures we agreed to, to save her. For this I thank God daily. None of our kids truly have any memory of what they have been through. God has been good that way. Nettie is still here, 10 years later and doing fantastic!! She has never made me doubt myself and therefore I have never doubted her. It is my hope that in 10 years, when she is 26 she will be as healthy if not more so and living a life she finds happy and fulfilling. I never thought we would be worried about “where will Nettie be living at 21, where will she work, how will she get around, who will care for her in our absence?” The doctor’s assured us, she won’t be here much longer. I am grateful beyond words. . . They were wrong.
Take Care and God Bless,
Renee
Saturday, March 25, 2006 7:12 PM CST
Hi everyone,
First thing I need to do is apologize to all of the people at Make a Child Smile and Share a Card for any returned mail that may have happened. We are working on the issue. Apparently the USPS changed over to a new way to provide reciepts for payment for their PO boxes. I payed in December for 6 months (have the credit card statement for proof) but the USPS has no receipt because on 1/1 they switched to a computer system vs the triplicate reciept book. I don't know what happened to the book but they can't seem to locate it and are telling me that our box is way past due. I am really working with them, but may have to change PO boxes when all is said and done. Bare with me as I work this out.
Ok, on with the updates.
Well, I have two sick kids right now. Marriela and Cody both got progressively sicker over last weekend. I waited until Tuesday when Marriela was on day three of a fever and Cody was clearly more congested (on Amoxicillin) than he was on Monday. Off to the pediatrician we go. Marriela's lungs sounded absolutely awful and her ear was infected (she told me that day at nap time she had an "ouchie in my ear mommy."). So on heavy duty nebulizer treatments, oral steroids and an antibiotic she goes. Then we moved over to Cody, who is still on an antibiotic for his positive nasal culture 9 days earlier. He is wheezing ALL over his lungs and BOTH ears are severely infected. . . SIGH. Joshua was the exact same age for his first of many, many ear infections as Cody is right now, 6 months. So he is now on every 4 hour nebulizer treatments and Omnicef antibiotic. He does seem better but not eating nearly as well as he was before getting sick. He lost 3 oz in just a week. Hopefully as we get more and more doses of antibiotic into both the kids, their lungs and ears will start getting better and they will both want to eat more.
Tray had his appointment with the facial surgeon. She did in fact, see what I was referring to with the recent disproportion between his skull and face. She is going to refer him to have a special CT scan done of his skull and brain that will provide a 3D image vs a 2D one. If his skull is malformed or if his brain is pushing inside his skull then he probably would benefit from some sort of reconstructive surgery to address the issue. But if his brain is in fact, small in size as well, and doesn't appear to be growing to big for his head size, then he really wouldn't have any reason to change anything. She also noted that his tonsils were HUGE and he is probably suffering from apnea at night. I told her that I don't really sit by their beds at this age to hear them breathing, so I wasn't sure if he was stopping or not, but I could tell her that he is a big time snorer. LOL She said that his inattentiveness, hyperactivty, and lack of focus could all be attributed to sleep apnea, so I have to go in each night and listen to see if I hear any episodes. She then went on to let me know that he has "YEARS!" of braces ahead of him due to a severe cross bite (when he shuts his lower jaw, his bottom teeth are almost all over to the right of the top teeth). I told her to stop looking at him since we were now finding things that I didn't even come to see her for! LOL
Joshua is staying at Casey's Place this weekend. He loves going and hasn't been in a while. He did wake with a bit of cold but he hasn't called us to tell us to come get him, so he must be doing ok.
Nettie is getting her hair redone. We're doing short and sassy braids this time (her suggestion) so it goes a lot faster when I don't have to make them so long. Other than that, she's doing good and getting excited about her Sweet 16!
Peter's mom is doing much better! (I told you prayers work!). She is home and doing much better. In fact, while in the hospital they had to do a CT scan and found that after only one round of chemo her cancer had compeletly stabilized! So now they want to do 6 more rounds to try and get her into a full remission and then move onto a daily prophylactic chemo.
My mom had catatact surgery which went very well. I went out to be with her and to help her get to and from her surgery and follow-up appointment. Hopefully this will be the answer to many of her eye problems! So far she feels like they really have helped, now she just has to wait until she gets her new prescription so she can see clearly out of her newly done eye(had the other one done about 2 months ago).
We are now down to NO functioning cars. Apparently my transmission is about to go and Peter is in need of a new radiator. The big van has a flat tire and stuck in the back yard so technically, we have no real car to use. I am still driving the Montana (needs transmission) knowing full well that at any moment the transmission could slip and we will have no power. . . but until then, we need to move these kids from one place to another in something! LOL
Well, that's it for now.
Take Care and God Bless,
Renee
Saturday, March 18, 2006 6:02 PM CST
***In case you didn't know, there are new pictures on the photo page***
Hi everyone!
Another week has passed! Happy St. Patrick’s Day to all (though a bit belated).
First thing I would like to do is ask that you keep a family in your prayers. Recently a 14 year old girl earned her wings after a long 8 year battle with Neuroblastoma. We had the honor of meeting this family while Joshua was in treatment back in 1998. We told them about NYC and some of the trials they were doing there and off they went for a second opinion and decided to do her treatment there rather than locally. She enjoyed a very long and wonderful remission until 5 years later (5 years!! Who ever said 5 years is the magic number for cure??) she relapsed and fought long and hard against her cancer. To respect their privacy I won’t list their name, but please know that the world has lost but Heaven has gained a beautiful angel.
Things are busy as ever here.
Yesterday Cody had his 6 month check-up and passed with flying colors. He is now 17 lbs 5ozs, 27 ¾ inches long. I should back up and let you know that we had a nasal culture done last Monday when I was there for his congestion. This past Sunday the doctor called and stated that the culture grew +Strep and started him on an antibiotic. Since starting the antibiotic Cody has never been so congestion FREE!! Now I know that the congestion we hear is not all “reflux” or just “another virus” because it clearly improved on an antibiotic. I should also let you know that things are moving along in a wonderfully positive direction on the pooping front. He’s had several dirty diapers ALL BY HIMSELF this week. So Cody is doing well. He had 3 more shots yesterday and now today has the fever, crabbiness and general blahs. I HATE shots!
Let’s see, who should be next:
Nettie went to see the orthopedic surgeon for her back pain. He had lots of x-rays done and nothing showed up on them. He suspects that the lower back muscles are just very weak due to her cerebal palsy causing her to have a “sway” back. But he wants and MRI of her entire back just to be sure nothing serious is being missed. We are doing that on the 31st. Hopefully we just need to do some strengthening exercises to help her pain.
Joshua went to see the neurologist to follow-up on his EEG monitoring. They all agree that he will be a good candidate for the Vagal Nerve Stimulator, however, they want to wait and see if he breaksthrough he new drug (Keppra) before proceeding with it. I feel however, that finally have the opportunity to be pro-active when it comes to seizure control as oppose to always being re-active when they get out of hand. I would like to put the device in (knowing full well that no drug has held him for more than a few months before he started needing increases in them) giving us a NON medication method of controlling any increase in seizures he has in the future. This will also allow us to use this new drug that much longer and possibly allow us to further decrease his dependence on these powerful medications. By the time I was done talking, I was sure that I had won him over. He’s going to set up the appointment with he neurosurgeon and doctor that implants the device (it’s just a one day surgery - no overnight or anything).
Tray’s appointment with the facial surgeon was cancelled (they had a lot of cancellations and wanted me to bring him in early, but he had his FIRST PLAY to be in and I wasn’t going to mess that up for him!) So we’re going this Wednesday instead. As for the play. . . Tray did FANTASTIC!! He knew his whole line and sang every song loud and clear. I was in tears for most of it and taking pictures (which didn’t come out because it was to dark and far away L ) because he looked sooooo happy up there!! I was just as proud as proud could be!
Marriela is doing well. She woke up very wheezy this morning, but after a nebulizer she was doing much, much better. She hasn’t needed anything else the rest of the day and has been in a great mood (except right after nap at which time I thought she was going to need to be hung up by her big toes! But with some more quiet time in her crib, she settled down and had fun playing chase with Trayvon). I should be hearing from her school soon as to what her latest testing showed, curious minds want to know. . .
Peter’s mom was admitted this morning for severe dehydration, nausea and general crappy feeling. We are very worried because we have already had to delay her chemo by a week for nausea last week and now it looks like she won’t start again this week. We want her to feel well, get her chemo and live life! It’s very frustrating to see someone you love dearly get sick over and over in an attempt to not be sick. So Peter went back down to be with her for the next few days.
I am suppose to be going out to my mom’s to take her to her cataract surgery. I hope Peter’s mom is well enough for me to do that, I know she is counting on me, but she will understand if I can’t. Sigh. So much going on and only so much time to fit it all in.
Please say a prayer again for Peter’s mom, Jean, that she starts feeling better and that her chemo can start back up. She is pictured up above with some of the kids.
Take Care and God Bless,
Renee
Friday, March 10, 2006 6:29 PM CST
Hi everyone!!
It's that time again.
Let's see, what's happened in the last week and a half? I went to my all weekend scrapbook event and was on the winning team for number of pages completed in one day and won a new album! That was so awesome because I worked my tail off for a week before the event getting my pictures, supplies and pages ready to just put them together at the crop-a-thon in hopes of being on the winning team. Cody spent the entire weekend with me and was a truly awesome sport about the whole thing. However, with that said, he was also sick for the whole weekend and by Sunday needed nebulizer treatments to stop the horrible coughing attacks (one even caused him to break a small blood vessel in his eye). I took him to the doctors on Monday and she felt that it was yet another viral infection given to him by one of his 4 siblings who go to school everyday and keep bringing home all of these wonderful viruses that shack up on my baby. I am getting more and more concerned that we are facing an immune issue just when Joshua was an infant. The doctor did agree to investigate his immune system function IF he continues to be sick in the spring as well. Apparently all these wonderful little viral dudes die out in the spring so he SHOULD start getting better in the next 3 months or so. I hope so, it breaks my heart to roll over in the middle of night to comfort him as he has a coughing jag that shakes the crap out of of his little body.
While at the doctors I informed her of our visit to the surgeon and his recommendations regarding the "pooping" problem. She asked for a bit more detail on the situation and I stated quite simply, that Cody has had fewer then 10 dirty diapers on his own since the day he was born. I have had to "assist" him with a thermometer since he was born. Once I said that she felt that he needed an Ultrasound immediately of his spine to rule out something called a "tethered cord". In other words, she was worried that his spinal cord, for whatever reason, was being stretched to tight impairing some of the nerves, thus resulting in his inability to poop. I haven't heard the final report yet, but the technician assured me that everything look perfectly normal and since I haven't heard yet from the doctor, I am assuming they were correct. So the pooping saga continues. LOL
The other kids are all doing well. Next week is a busy week for us, LOTS of appointments:
Cody sees the pediatrician for his well-child (for him that's an oxymoron) 6 month visit on Friday.
Tray sees the facial surgeon on Wednesday to evaluate the growth plates in his face. Since he has significant microcephaly (very small skull) and his face is going at a normal rate, things are begining to get out of proportion, so I want to be sure that there we follow-up on this for his social well-being.
Joshua goes to his annual Brain Tumor Clinic (or as Peter likes to call it the "I don't have a brain tumor clinic") on Tuesday. They will review his MRI cd that we brought from the other hospital and go over any new developments they have in long term care.
Then he goes out to Strong Memorial for his follow-up appointment for his inpatient EEG monitoring. We will find out if they recommend the VNS device as well as if they feel he would benefit from something to help with his anxiety.
and the last appointment is for Nettie. She is seeing the orthopedic specialist on Friday due to severe, persistant lower back pain. I am hoping that he can help us pinpoint something that is causing it so she can then find some relief.
Other than that, all is going great here. Oh, except Peter's "pimp mobile", his 1991 Cadillac Deville, decided it could no long tolerate its heater core. So it revolted and won itself a brand new one at a hefty price! And we finished Nettie's birthday shopping today. J-Lo is making some serious money off of her perfume line!!! I couldn't believe how much that stuff was! But Nettie will be happy and that's all that counts. . . right??? LOL
Ok, now, really, I think that's it.
OHHHHH, Peter's mom is doing much better than expected and will be doing her next round of chemo right on time. Her shingles didn't get bad at all and her counts rebounded beautifully. We are throwing her a suprise birthday party on Sunday in Elmira!! I hope she loves it and feels great at it. Thank you so much for your prayers!
Ok, I'll leave now.
Take Care and God Bless,
Renee
Wednesday, March 1, 2006 9:42 AM CST
Hi everyone,
I can’t believe another week has passed! Time literally seems to be flying. It’s amazing when you hae a baby just how much changes in such a short, short amount of time. I was, again, watching Cody in awe as he tries more and more things. It occurred to me that in the first year of life, you only have a one month old for one month and then a 2 month old for only one month, etc, etc. My other kids are 10 for a year, or 15 for a year but that first year of life is so amazing and short. Siiiigggghhhh.
Ok, all done with my analysis of the passage of time.
So, how are the kids? Actually pretty darn good at this time. LOL Joshua is doing well from a seizure stand point, but having some “anxiety” issues now. It seems that the Neurontin he was on for so long was kind of “dulling his perception of the world and now with it gone, the poor kid is facing “life” full force. I would be overwhelmed too. I spoke to the neurologist and they are going to discuss some options to help him as he learns to adjust to his “new” perception of the world. Overall however, he really is doing great.
Nettie is still having increased urination and now she has pain over her kidney area so we are taking in a urine sample this week. Other than that, Nettie is just getting more and more excited about her birthday and her surgery. Not necessarily in that order. J LOL I know that she thinks she is going to magically be able to wear many of the clothes she currently can’t, but I have been trying hard to be sure that she understands that this surgery is for the relief of back pain and to “even” her out. It’s not like she’s getting a tummy tuck (which by the way she has listed as her next desired surgery). It’s so hard for the young girls who see nothing but skin and bones all around them and they don’t look like that. She is soooo beautiful (and I’m not just being partial here) and yet feels that unless she has a flat tummy, perky boobs and a well defined bottom. . . She’s ugly. She LOVES to watch that stupid 90210 Plastic Surgery show on TV and compares herself to those girls alll the time and wants to know why those teens can have tummy tucks and such and she can’t. Not even counting the money issues, the reasons why not are so many. I hope one day she will be happy just being Annette, our beautiful daughter.
Trayvon is doing very well still. His vivid imagination continues to blow us away (as well as stump us at times as to where these thoughts come from!). He has many different proposed methods of ridding our house of “Bad Guys” should they come a callin’. He also has decided that he WILL be a superhero when he grows up even though he has stated, “I am going to be a superhero even though I know that there really aren’t any superheros in real life. But I will be one in fake life and that’s how I will get to be one in real life.” Did any of you follow that LOL!?? Yet, to Trayvon, it ALL makes sense. So more power to him for trying to solve tomorrows dilemmas with today’s ideas.
Marriela. . . Is doing great. Her exczema is really heading in the right direction now and she is doing pretty good this week behavior wise. It’s good for her to be back at school as she has an outlet for her ceaseless, exuberant energy. Her latest “quirk” is that she loves to carry around this case of bubblegum - the long measuring tape kind of gum in the pink round case. She slept with it, has carried EVERYWHERE with her for the past three days and is happy as can be as long as it is present. (it does actually have gum in it, but she doesn’t seem aware of that fact so I am not going to enlighten her to it).
Cody saw the surgeon yesterday for his hydrocele (a persistant pocket of fluid in the scrotum). It’s small but definitely there. We will watch it until he is 2 and if it isn’t resolved by then, then they will correct it with a simple surgery. I also mentioned that Cody has a great deal of difficulty passing his stools. I usually have to stimulate him with a thermometer to assist him. So the surgeon evaluated his bottom with his finger (which Cody HATED) and thought everything felt normal. So we are to try a glycerin suppository every other day to see if we can’t get him moving along on his own. If that doesn’t work then we go back in 2 months and they will try an oral stimulant. If that also doesn’t work, then they will investigate more as to why he is having this issue. But I should note, that Joshua had the same thing. However, he had an old German pediatrician that stuck her finger up his little butt, popped something and like magic, Joshua never had any more issues with stools again. Joshua had also been evaluated by a surgeon for the same reason he they didn’t find anything either, but the pediatrician knew exactly what was wrong and fixed it in less than 30 secs. I wish I knew where she was now (but that was in NYC).
We could use some prayers again for Peter’s mom. Her cancer had progressed some more while off of the chemo, so she has restarted it again. However, yesterday she woke up and has developed a bad case of the Shingles. She is in pain, doesn’t feel well and frustrated by the whole thing in general. Thanks for your prayers before, they worked, so here’s hoping they do again.
Peter and I are doing well. I have my annual scrap booking weekend this weekend. Last year I was violently ill with morning sickness and only got to go for a few hours each day. I feel great this year, but now I have the causative factor of my morning sickness totin’ along with me to the event (never did get him started on those bottles like I should have! LOL). So it should be interesting to see how much scrap booking Cody lets me get done.
In our thoughts and prayers,
Renee
Tuesday, February 21, 2006 6:30 PM CST
Hi everyone!
I am so sorry for the delay in update. Joshua is out of the hospital (tomorrow will be a week). He was in for a total of 12 days. It was a long haul and when I have more time I'll explain how it ended up being me, Cody and Joshua stuck in a room by ourselves for 7 days! LOL But in the end it was so well worth the trip and admission. Joshua has been virtually seizure free for the past week and we are off of a medicine he had been on for almost 6 years. In addition, we are on only 1/2 of the dose of another med with the goal of getting him off of that one all together as well. The big change in seizure control came with the addition of a new drug named Keppra. Hopefully with the drug and the surgery for the Vagal Nerve Stimulator (VNS) that we still want, he will be on his way to a pretty much seizure free period of time. I say a "period of time" because we know that his epilepsy is aggressive and difficult to treat and no one treatment will be able to hold it at bay forever. But we will take whatever time we can get. It is also awesome that we went because so much of my old Joshua is back!!!!! The drug he was taken off of in the hospital apparently was the one that was responsible for his lethargy, and "dulled" personality. He is sooo much brighter, happier and outgoing just since removing this drug. It just goes to show how powerful these stupid meds are and all the more reason I want the VNS instead of more personality changing drugs. We also had an MRI done (another adventure I'll go more into another time) and wait anxiously to hear the wonderful words "All Clear". On March 4th it will be 8 YEARS since diagnosis!!! Joshua has enough to deal with without having to worry about things like cancer. Humph.
The rest are doing well. We are going to try the diet again starting next week with Marriela. We are also hoping to see some improvement in her, now severe, exczema that is taking over her entire lower half of her body! It is awful to look at. She doesn't seem bothered by it, but it can't be comfortable.
Tray is doing wonderful and is eating like a horse! He was sick for the first time in eons last week (of course he had to run his first fever in 2 years the night they come out to see Joshua in the hospital). But he has since fully recovered.
Nettie also had a bad cough, but that has since diminished. She is looking and feeling well. Now if we could just tame those teenage hormones that make them so dang moody we'd be all set. LOL
And last but not least, little Cody Bear. He is dealing with yet another cold. He HATES having a stuffy nose and it seems that it is always stuffy! I finally realized today that I had started drinking milk again while we were in the hospital and am now wondering if his chronic cough, runny nose and very red and chapped face are a result of the dairy. So starting tomorrow, I will be back on my dairy free diet as well. At least Marriela and I can work on finding our own "cool" foods to eat. He is now sitting independently for upto 5 minutes (kindda of leaning over his feet, but definately sitting). And we have started him on some veggies. He seems to like them all so far (Sweet potatoes, Carrots, Squash and Sweet Peas). I also offered him his first bottle of Soy based formula via bottle tonight and he was really interested in it, but couldn't figure out the nipple. So Peter is going out to get some differnt ones to try.
Well, that is it for now!
Take Care and God Bless,
Renee
Monday, February 6, 2006 7:42 PM CST
Hello everyone,
Actually, not very many people have stopped by in recent days, so this is more of a journal for myself. LOL. That's ok, it's nice to have a concrete site to go to and find all of the things have happened chronologically detailed.
Well, winter has finally found us. Eventually it had to figure out that it missed us completely thus far. However, it found us on the day that I have to travel out to Rochester with Marriela and the baby to relieve Peter who is staying with Joshua at the hosptial for his 7 - 10 day EEG monitoring. Please say a prayer that we are able to travel out in safety. I miss my boy already and he's not even gone a whole 24 hours yet! I have the stuff that needs to go in the car sitting here by the door ready to put in. I'm going to pack the entire car tonight since I may awake to over a foot of snow tomorrow with the heaviest yet to come! Don't want to be packing in that.
Tray has a dentist appointment in the morning and then I have an interview with an agency that gives grants for having lead based paint removed. We have lead paint on the inside of all of our windows (I hadn't realized it until a contractor pointed it out to me). If all goes well, they will also provide a partial grant to replace all of the windows and fix the doors as well as some minor repairs (one of our ceilings in the back of our house is in rough shape due to some severe ice damage 2 years ago). After that, I'm on the road to Rochester.
Joshua is handeling everything in stride and Peter seems to have made himself at home as well. He's never been good at "hanging out" at the hospital. I have always been the one to spend the night with the kids whenever one of them is in. But with Cody now, it's impossible. I suppose at some point I should teach him to take a bottle and start some solids, but I LOVE breastfeeding and knowing he's my last chance, I hate turning any of that wonderful time over to a bottle or spoon yet. Selfish. . . I know, but it ain't gonna kill him. :-)
We did start the diet for Marriela and lo and behold, there was a significant change in her behavior!! However, with that said, it was also a nightmare finding food for her and she is down to 30 pounds (started at 35) already and that was only 4 days into the diet. So we are going to have to research, buy and prepare A LOT more in advance before we give it a go again. I mean, we'll start it very soon, I just want to have located a store that sells a variety of selections as well as order some stuff off the internet to try and boost her options for food before we start. I was shocked at how much more relaxed and easy going she was with far fewer "tantrums". Two days ago, we were still doing the diet, I said that I was suprised at how "angry" she was in the late morning, and then Peter informed me that she had eaten some Munchkin's. You could clearly see the impact that the Gluten had on her.
I spent all day Saturday in the ER with Cody. He had been getting more and more congested despite the ongoing nebulizer treatments and then Friday night he spiked his first real fever, 102.8. I was worried that he had developed a mild pneumonia or something so I took him to the Urgent Care where they informed me that they didn't have the facility to handle an infant, but still wanted to do a chest x-ray and Albuteral treatment before we left. Then they doctor "reads" the x-ray and states that he definately had a bronchitis or pneumonia in his right lung and we need to go to the pediatric ER for evaluation. I get there and they hook him all up thinking that he must be real sick (mind you he's laughing, smiling and having a grand old time practicing his new rolling over skill) since a doctor found a pneumonia on x-ray and had stated in her report that he was in respitory distress. We were there only 45 minutes before the doctor came in, listened to him again, looked at the x-ray and said, "Your little one has a chest cold, continue the nebulizer treatments if he needs them." That's it. A chest cold. He hasn't run a fever since and actually sounds A LOT better today. Sooooo, I guess if you want to get rid of a chest cold in a baby, take them to the ER and/or Urgent care. Seemed to work for Cody! LOL
Tray is all excited about his sleep over at Mrs. Launt's house (the school nurse and family friend where Tray will hang out until I get back from Rochester). She has a cat and well. . . mommy is allergic to cats so this is a treat of all treats to get to play with a cat!!
Nettie on the other hand is very anxious about my departure. She is truly a "Momma's" girl and can't stand when I have to leave for any length of time (yet doesn't faze her in the least to go off to Casey's Place for a whole weekend LOL). I have given her a calander to cross off the days so she knows how many have passed. Hopefully she will not stress to much.
Well, gotta go pack before I'm snowed in LOL.
Take Care and God Bless,
Renee
Tuesday, January 31, 2006 9:24 PM CST
Hi everyone,
Well, I had a wonderful, long update of all the new changes going one. But somehow, somewhere it got taken away into cyberspace, never to be seen again. So he goes an abbrevieted version...
1. Cody and I developed colds one day after returning from Florida. I am all better, but Cody seems to have also caught RSV and today had to go to the doctor because his coughing and wheezing badly. He is now on nebulizer treatments every 6 hours. Hopefully this will get him well soon because. . .
2. Joshua is going to be admitted on Monday for a 4 - 10 long term EEG monitoring study. He continues to seize even on the increase in meds. However, more disturbing are the coordination and personality changes that have slowly becoming more and more evident with the passing of time and the increasing of meds. Peter and I have decided that IF this EEG monitoring determines that he is a candidate for the Vagal Nerve Stimulator, then the is the route we want to take. No more meds if we can help it. They are causing him to walk around in a "fog". I want my sweet, caring, cuddly Joshua back!!
3. Marriela continues to exhibit aggressive behaviors towards. . . well, just about everyone. LOL The pediatrician agreed that we "could" try her on some medications, BUT they come with the risk of her losing a significant amount of weight. Something she doesn't have any real room to negotiate with. So instead we agreed that we would go back and try the completely dairy and gluten free diet. Looking back we realize now that many of Marriela's current behaviors really didn't exist until she weaned herself off of her formula (which corresponded with the removing of her bottle) and she started eating more and more "regular" foods. At first I was very stringent about maintaining the dairy and gluten free diet, but then we began to introduce things here and there, and her GI tract didn't react in a negative way at all. So we have since been giving her all the cheese and bread products she likes. Wish me luck making her current list of foods she eats daily (mac n cheese, pizza, waffles, bread with butter, American cheese slices, pasta). The Mac n cheese and pizza are the hardest because I haven't found a gluten AND dairy free version of either yet. Not that the new versions will even taste like her old favorites! LOL
We start the new diet tommorrow and are doing it very strictly for one week. If behavior changes for the better are noted we will do it one more week. Then we will re-introduce either milk or gluten and see if there is a reaction. If not, then we repeat the process with the other product. If the behaviors return, then we know it is dietary related. If not, then it's time to try the meds. Say a prayer for us! She may just eat us alive for witholding her favorite foods LOL.
Tray and Nettie are doing well right now. Tray had a monster Migraine on Saturday after drinking a Dunkin' Donuts hot chocolate. It lasted about 2 hours with 45 minutes of that vomiting. Poor thing. I HATE seeing my kids in pain!
Well, that's it for now.
I'm tired and this is my second update.
Take care and God Bless,
Renee
Thursday, January 19, 2006 7:48 PM CST
Hello everyone!!!
We're home from an exhausting but amazing week. I think Trayvon will have many wonderful memories to call upon for some time to come! LOL I'll go into more details of our whirlwind trip, but it goes without saying (for those who have been to Give Kids The World) that we were treated like royalty and Make-A-Wish made sure that we had ample funds to treat the kids like they've never been treated before! Tray has a Goofy hat, an ET hat, a pirate hat, a baseball hat with Minnie and Mickey and the gang (and was vying for a Mickey wizard hat on the last day, but I had to draw the line somewhere!) as well as about 10 new stuffed animals to play with until his hearts content. He fed Dolphins at Seaworld, braved the Spiderman ride at Universal (where he promptly threw-up afterwards and then begged to go on again - which we happily obiliged LOL) and sat in awe (and fear) at Fantasmic @ MGM studios. He was also part of the Festival of the Lion King show at Animal Kingdom and was honored with a one on one meeting with the the actor playing Indiana Jones in the stunt show at MGM. He was also allowed to "help" open the doors of the tram on the Back Lot tours. Back at Give Kids the World he ate until he puked (unfortuantly this was quite literally the truth) and was THRILLED to have ice cream every night as well as sausages every morning. He fell asleep each evening playing with his newest toys and stuffed animals. He danced up a storm with Shamu in the Magical Castle and went horse backriding in the Corral right next to our villa. We had TWO villas to accomodate all of us and the wheelchairs (we brought along our adaptive stroller for him and/or Joshua if they needed it - and they did).
As for the rest of the gang. Well, at first Nettie was not happy. She had memories of when we had gone as a family of only 4. It was much more relaxed and we were able to do many more things since we didn't have to "fight" with Marriela as we did this time. She had to be reminded that things change and so will her idea of what her trip this time will be and that it doesn't mean that it is bad, just different. She didn't like Universal since so much of it is ride oriented. However, Joshua and Tray loved it so that was what mattered to me. She finally relaxed at Seaworld and really was happy when we went and saw Fantasmic (this was the one true memory she had and enjoyed just as much as she remembered she did) so I was elated she was finally able to allow herself to relax and enjoy the trip.
Joshua - well, nothing needs to be added here! He had a blast. He wanted to show Trayvon everything but since he's older and more "ride" oriented, it was hard to make him understand that we couldn't all just stand around all day as he went from one thrill ride to another. He did however, get his father on the Return of the Mummy indoor rollercoaster (didn't know it was a roller coaster until it was to late) and the Jurrasic Park water ride. He also talked me into going on the Kraken at Seaworld - NEVER AGAIN!! That thing almost killed me with fear. And what did Joshua think of it, he turned right back around and asked the attendent if he could go again!! LOL He did, but not with me by his side. I stood next to the attendant afraid I was going to have to grab onto him when my knees gave out (but they never did, just shook really hard for the next 20 minutes! All in all, Joshua had a great trip as well. He was also very impressed with the idea of icecream every night and he also had it every morning. LOL
I'll save Marriela for last. . .
Cody bear. He had as much as any 4 month old could have on a vacation. He ate, slept, hung out in the stroller and sported his sunglasses like a pro. He was happy so much of the time it was great!!
Ginger (Nettie's nurse who Make A Wish allowed to go with us since we had so many medical and physical challanges to accomodate) had a very nice time. We NEVER could have done this trip without her. We were ALL pushing someone one, in something, at all times. She helped alot with Marriela and with the three of us, it was possible for all of us grown-ups to get to see many things Peter and I wouldn't have been able to by ourselves. MAW made it clear however that she couldn't go as a nurse, just as an extended family member (due to liability) and she did a great job of "not" being a nurse, but helped in all other capacities. She and Nettie and Marriela shared one villa while Peter and I and the three boys stayed in the ajoining villa.
Ok, ok, Marriela... This trip was a bit overwhelming for her. BUT, one of the most priceless moments of the trip for me, was when Marriela got to see the Barney show at Universal! Afterwards, Barney himself came out to greet us. She was in HEAVEN!! We bought her a Barney video after the show and she carried that thing with her the rest of the week (including onto the plane home!). She loved meeting characters but had a very hard time with transitions from ride to ride. We spent a lot of time with her just trying to reason and bargin with her to get her to comply with the rest of the plans we had. She tried though. LOL
Well, baby's getting mad at me that I'm ignoring him. I'll write more later!
Till then,
Take Care and God Bless,
Renee
Monday, January 9, 2006 6:13 PM CST
Hi everyone,
I promised one more update before we leave for Florida so here goes.
Cody had his 4 month check-up today and it went well. He is now 15 pounds (gaining at a much slower rate now than he was but still ok) and 27 1/4 inches long. He doesn't look lanky, but on the charts for length vs height, he's below the 5th percentile! Trust me when I say, he has plenty of baby fat on that long body of his! LOL Since he is still refluxing so much (and now that he's older he's producing more acid which makes it more uncomfortable than when he was first born) we increased his reglan and zantac to accomodate his weight increase. Then she checked his hydrocele, and yup, it's still there (actually it has continued to enlarge, though very slowly). So now he has earned himself a consult with surgery to be sure that it's not a herniated area. Sigh. Only 4 months old and he's certainly proving himself to fit right in with the rest of them. I don't know what I would do if I had a child with no doctor appointments or meds to take! LOLOLOL The appointment ended with the administration of 4 shots and a dose of Tylenol (since he did spike a temp with his last shots). He is now at home miserable and even with the Tylenol running a 100 plus temp. I HATE THOSE SHOTS!!
Next we talked about Trayvon. He is thrilled about his Disney trip! The Dr. and I talked about his behavior in school and she thinks it sounds like classic ADHD (and he has had so many insults to the brain that it would be surprising if he DIDN'T have it). BUT, since he's a cardiac kid, none of the meds are approved for use in his type of defects. So he really can't help his behavior sometimes and now there's nothing we can do to help him either. Short changed again poor baby. We then also talked about his microcephaly (abnormally small head) and how his face and head are no longer in proportion with one another. His head hasn't grown at all since he was 20 months old, but the lower half of his face has. Therefore as time goes on and he gets bigger and bigger, the discrepency will be more and more noticable. She is making a referral to a facial surgeon just to be sure that we are not leaving any stone unturned. You see, nobody addressed many of Annette's physical issues because they were so consumed with her medical needs (we were just as focused) and we missed some critical things in her development. For example, Annette should had have been on growth hormones from the age of 9 on. She should have also been treated for precocious puberty (just like we are Joshua) as well. But we missed both of those issues and now it is to late to address them. Her final height is 4'9" and she is very, very self concious of this fact. So we want to be sure we don't leave Tray feeling like we didn't care about his physical apperance and just worried about his heart. If we go and there is nothing that can be done, at least we can honestly say, we tried everything baby, and we just have to deal with it. He can be mad, just not at us. LOL
Then we talked about Marriela. Sweet, hyperactive, little Marriela. Sigh. She has SOOOO munch energy!! We did talk about some of her interesting quirks. The one that worries Peter and I is when she talks in the third person. For example "Marriela STOP hitting Marriela." or "Marriela is talking to me, tell her to stop." etc, etc. We don't really know how to address the situation because we have never encountered this before. So the Dr. is going to set her up with an appointment with the Developmental pediatrician as well as request a pysch consult. Marriela has a long line of relatives with pyschiatric issues in her family (including her siblings). Now I honestly don't think that this is a psych issue, but they would be the ones to guide us in how to stop this behavior and they can also provide treatment for her hyperactivity if necessary before the age of 5 (our ped doesn't like to medicate before that age).
That's three more doctors to meet and see. LOL
Then she shared her excitment that Nettie will be having her surgery since it is something that Annette so clearly wants done. Other than that, Nettie is doing fantastic! Surgery is only 3 months away!
And finally Joshua. She felt that we should try one more medication trial before moving to the vagal nerve stimulator. I told her that we don't know if we agree or not, but we truly appreciate her input. It's such a tough call to make, but maybe after meeting with the epilepsy team out at Strong, we will have a better idea of how to proceed in controlling his seizures. He is coming up on his yearly MRI of his brain (February 27th). I hate when I know so far in advance because it gives me that much more time to get all worked up. Please pray that all continues as it has. . . NO DISEASE PRESENT!
Well, that will be it until we get back from Florida! I am sooo excited myself!
Tell then,
Take Care and God Bless,
Renee
Monday, December 26, 2005 7:51 PM CST
Friday, January 6, 2006
This will be a quick update. Things are busy here as usual. Trying to pack up Christmas stuff, pack for Florida, run around to doctors with the kids and now my dad is in the hospital. He is going to be fine but his sugars went crazy and almost had to be admitted to the ICU. He is now doing better, but sugars are still way to high even with an insulin drip and he has an elevated white count (indicating an infection somewhere) so he's stuck in the hospital for a bit. Peter went to be with his mom for her first post treatment scans appointment. Please pray that all is well and there are no suprises on the scans. She is looking and feeling great, so hopefully that corresponds well with the scans. And my mom is having cataract surgery next Wednesday. She has been having a lot of visual issues and hopefully this will be the answer. Again, prayers that all goes according to plans would be greatly appreciated!
As for the kids. Doing well. The update below still sort of sums up the current issues with all of them. I'll do a better update before we leave for Disney World!!
Till then,
Take Care and God Bless,
Renee
Hi everyone!!
HAPPY HOLIDAY’S and MERRY CHRISTMAS!! We had a wonderful Christmas here and hope everyone else’s was as enjoyable. Peter’s mom and dad and my dad joined us Christmas day and last weekend my sister, my mother and my nephew all came out to celebrate a bit early.
The kids were all in the Church Christmas Pagent last weekend. Marriela was a horse in the manger (but she kept galloping away and needed to be lead away from the manger towards the end. Joshua was one of the shepards and Tray was in the children’s choir. Nettie declined a speaking role and since there is no wheelchair ramp, she opted to just sit and enjoy the pagent with daddy and family. I was in the signing choir and we signed Silent Night and We Wish You a Merry Christmas (note: that’s a tough one to sign! LOL). I think we did a good job, but could have started practicing a bit sooner than only 3 days before the service OOPS.
On the medical front:
Cody, still puking but otherwise doing fantastic. He loves to “stand” rather than sit all the time now. He is spending more time in his excersaucer each day. Still sleeping great and other than going through about 10 bibs a day and 4 - 5 outfits due to the never ceasing drool-a-thon he’s doing excellent! He made out really well for Christmas, but doesn’t seem to know that yet LOL.
Marriela, also doing great. She is still working on the toilet training with number 2 but showing some more signs that we will have success sooner rather than later. She also now knows her primary colors and is just starting to learn her letters. Marriela was the funniest to watch on Christmas day. Last year she found that Santa had left her a doll stroller (silly Santa left it out without wrapping - kindda awkward to wrap if you know what I mean) and she could NOT get past that one toy and didn’t bother looking at another gift for over 5 hours!! This year, Santa left a gift unwrapped (a Leapfrog desk) figuring it wouldn’t really be of that great of interest to her until she was shown what it did. WRONG, she sat down and that was all she wrote. I handed her a gift and with Trayvon’s assistance it was opened, only to find that I had given her a Barney video . . . Oh man was she in Heaven! She spent the next 20 minutes signing every Barney song she could think of while sitting at her desk. Meanwhile the rest of the kids just ignored her and went about their task of finding out was under the tree for them.
Trayvon, still doing well. Behavior in school is so so at this time. Still trying to figure out what it is that he is doing wrong that results in him “losing” his cubes each day. He states it’s because he’s not listening. If that’s the case then I need to meet with the teachers, because I don’t think they fully understand that impact that Tray’s medical history has had upon his poor brain. He doesn’t “listen” at home either, but Peter and I both know that most of the time it really isn’t intentional. He can only focus on one thing at a time and really can’t “hear” you, even if you’re only a few inches from his face. It may be annoying, but certainly not punishable. So we’ll see what the teachers say next week. He truly enjoyed Christmas and seemed to really like all of his gifts. But the biggest hit was a Spiderman 2 water cooler (Trayvon is HUGE drinker due to his meds). But overall he really seemed to like virtually everything he got.
Joshua, doing well, but still seizing. He had another increase in one of his meds. Peter and I have been talking and we are more and more leaning towards the Vagal Nerve Stimulator instead of trying anymore meds. If it works, then he shouldn’t need MORE meds, but actually should be able to wean down on some of the doses (allowing longer usage of more meds). It has also been shown to have the added benefits of increasing alertness, attention span and overall activity level (something we’ve been trying to do with the Adderall). Any more drugs we try all of the side effect of lethargy, weight gain, etc, etc. Exactly what we DON’T want. So we will wait a bit longer to see if the increase works and then talk to the docs about the surgery if it doesn’t. As for Christmas, Joshua also seemed quite happy with his loot. However, I think by far, his favorite is the Spiderman 2 (see a theme here LOL) mini fridge for his room. Now. . . I am sure that Santa was thinking it would be great so that his drink he uses for his late night meds would be nice and cold vs. room temperature and yucky. However, Joshua thinks it is ONLY meant for Pepsi since the box stated that it could “hold a six pack of any soda”. Sigh, Santa needs to read the boxes more carefully and block out what he doesn’t want the kids to read LOL.
Annette, she had her appointment with the plastic surgeon and the surgery date has been set for April 11th!! She is very excited. I am sure she has WAY underestimated the pain that will be involved, but I am going to let her be happy for the time being. Santa even brought some very delicate and pretty bras for “after surgery” (she was very embarrassed but pleased as punch at the same time). Nettie’s big gift was definitely her new cell phone! Santa was able to put her on mom and dad’s plan and get her her own camera phone! What a Santa. She also got a digital camera that was a big hit as well. Darned kids, they get older and the gifts get more expensive! LOL
Peter and I also did very well. It truly was wonderful Christmas with Cody here. I continue to get weepy at least several times daily thinking that this is the end of Baby’s First Christmas”, the last time he will fit into a certain article of clothing, he’s never going to be 7lbs 14oz again, etc. etc. I have no idea why I am still so emotional, but most of the time it truly love and happiness that brings on the tears not saddness. So I don’t really care, and Peter’s getting use to it (he actually likes to try to get me to cry by singing songs that talk about “remember when” etc.) He thinks he’s pretty funny.
Well, I’m exhausted so off to bed I go.
Take Care and God Bless,
Renee
Sunday, December 11, 2005 1:03 PM CST
Hi Everyone!
I hope this finds you all well and in the “Holiday” mode. For those struggling though the Holiday season missing a loved one, you are in our thoughts and prayers. This is such a difficult time for some.
We now have our tree up and our decorations are out in full force. The shopping is coming to an end and all seems to be relatively in order. The picture above was taken on the 11th and is only the second time I have taken a photo of ALL the kids together! Isn’t it funny how, with each new child, it seems harder and harder to get them all together to take a picture? LOL
Cody is growing by leaps and bounds and is already in 6m clothing! I am amazed at how quickly he is gaining and growing. He is now awake most of the day (smiling about 50%, crying about 20%, eating about 10% and sleeping the rest ). He sleeps through the whole night with only one feeding at around 4:00am and then wakes up around 6:30 - 7am. Cody did need an upper GI series done last week due to his continued impressive reflux. But it was negative for anything big, bad and scary so we just have a “pooker” on our hands. He’ll outgrow it some day, just as his brother did.
Marriela is our constant source of energy in the house. No matter how calm it is everywhere else in the house, wherever Marriela is there is sure to be some sort of chaos ensuing! LOL Her toilet training however, is going great and we have now had several dry nights as well as completely dry days for the past couple of weeks! Still working on the PooPoo part though. LOL She is doing great health wise and doing well in school.
Trayvon has had no recent cardiac issues to contend with. He did see his cardiologist for his 6 month check-up and all was as well as can be. We don’t even have to go back for another 6 months unless he has issues in the mean time (which we always do). His behavior has taken a wonderful turn for the positive. His teacher states that the “OLD” Trayvon is back and all is much better. He also saw the eye doctor and we found out that he doesn’t need his glasses anymore!!! One less article of stuff to remember as we run out the door and one less expense needed right at Christmas time! LOL He was very happy to hear the news that glasses are a thing of the past!
Nettie, on the other hand, found out that she needs MUCH stronger glasses! This would explain the significant increase in headaches that she is having. So we are going in the next week or so to get some new specs for her. She is very excited about her visit to the plastic surgeon tomorrow. I am hoping the weather holds out for a nice easy trip out to Rochester. Not much more going on with Nettie. LOL
Joshua is once again having more seizures. Last week he had an “intense” but brief seizure that left him dazed and confused. This was followed up by a severe headache in the front of his head. Peter picked him up and brought him home where he fell asleep for 3 hours. He was fine when he woke up. Peter and I have noticed a definite increase in the frequency of seizures again and we are not happy that he is now having ones that leave behind things like confusion, headache , fatigue etc. . Haven’t heard back yet from the neurologist as to what the plan is.
Other than that, all is going well at the Curkendall household. Oh Yeah!!! Tray’s trip is planned!!! We are off to DISNEYWORLD the week of 1/13 - 1/19. Yep, we’re leaving on a Friday the 13th. Ohhhhhh, I hope that’s a good omen and not a bad one! LOL Tray is very happy. Peter and I were given permission to bring an additional person because we are just out of hands. Nettie needs a pusher for her wheelchair, Cody needs a pusher for his stroller and Marriela needs someone to hold onto her “restraining” device (I hate to call it a leash) at ALL times. In addition, Joshua can’t hear in a crowd so he has to be in direct sight of someone at all times or you can’t get his attention (and worse, you can’t call out if he’s in danger, because he won’t hear you). Tray is actually the easiest one to take! Go Figure. So we are taking Nettie’s nurse, Ginger with us. She is also Marriela’s Godmother and knows all of the kids very, very well. This will be a HUGE help to us.
Well, that’s it for now. I’ll update more closer to Christmas unless something spectacular happens in the meantime.
Take Care and God Bless,
Renee
Thursday, November 17, 2005 7:26 PM CST
Hi everyone!
I know it’s been a while since my last update. Things have been VERY busy here! Let’s see, since we last “chatted” my baby, Trayvon, has turned SEVEN years old!!! Can you believe that?? I sure can’t. LOL He is actually having his Big Party this Saturday. It’s a Spy Party with Special Agent badges and fingerprinting and code breaking and even a spy kit to get them started! It’s going to be so cool. Tray’s really into good guy - bad guy stuff right now. Speaking of good guy - bad guy, Tray is having a bit of difficulty the last three days being “good” at school! On Tuesday I met a classmate of Tray’s when I was picking up some fund raiser stuff, he told me that Tray was calling him names because he wouldn’t give Tray the swing. Then yesterday Tray came home with a note from the teacher (without going into all of the details) that stated he pretty much ran wild all day long and didn’t listen at all. Then today was the real kicker, the PRINCIPAL called!! Apparently Tray “accidently” punched a girl in the eye with his fist. Of course it was an “accident” according to Trayvon. LOL So needless to say, my new little seven year old is not playing any video or computer games for the next 3 days as well as having to turn away from the tv at night when they are going to sleep. He’s not happy, but is handling it all very well. Hopefully the party will help him get reset in a positive direction.
Healthwise he is so-so. Last night he told daddy that his heart was hurting him (“it is pumping and hurting at the same time”). When I got home from my meeting, I listened to him and he was definitely skipping beats as well as having some significant valve leakage (you can tell because the whistling of the leaking valve gets louder as it leaks more) and his O2 sats on the monitor were only in the high 80’s. But today his O2 sats were great and he says he has no more pain. The leaking is barely noticeable right now, so I didn’t bother calling the doc yet. He has a full work up in just 1 ½ weeks and will do a Holtor monitor next Monday as part of that work-up. So we’ll see then just what’s going on.
Ok, next trouble maker has been Cody. Believe it or not, he just couldn’t be an odd man out by not needing any medical help or medicines. Since just before his well-check up a couple of weeks ago, Cody was getting progressively more and more congested and was coughing a very severe cough. I took him last week concerned that he was aspirating on his spit up because he vomits SO MUCH!! The doctor agreed that he was way to congested for a 2 month old and agreed to try some Zantac. I am happy to report that not only has the vomiting really decreased, he is slowly becoming less congested and hardly coughs at all now. He is getting very big very fast. His last weight was 12lbs 10ozs, that’s almost a 5 lb weight gain in only 6 weeks! LOL I have very high fat breast milk. Hopefully he’s drinking away all my excess poundage. J Other than the above, he’s doing great. He LOVES to stand with you holding his hands and still sleeps almost 18 hours a day. He’s a dream to take along with me, because as long as he is in his car seat, he stays asleep the entire time we are out. People are beginning to wonder if I’m drugging him because they never see him awake! LOL
Joshua is now doing much better with his seizures since lowering his night dose of Lamictal. We are very pleased with his current level of activity (only one or two a week right now!). So I will definitely make it clear that we are staying here for a while with this med. He apparently is doing well in school also. The past 2 days have been the State 5th grade Social Studies tests and the teacher’s all feel that he has done a very nice job. They aren’t allowed to provide the same level of modifications to the State Tests as they can to regular school tests, so he is responsible for A LOT more knowledge, information and output. I hope he did well for all of the effort he has given.
Nettie is doing just fine. She is excited to see her plastic surgeon in just under one month. However, today she did inform me that she is having a lot of headaches, especially when she stands up or excersises. I don’t know what that’s all about, but she is asking for Tylenol almost everyday now for a headache. I’ll call the pediatrician tomorrow to see what she thinks.
And last, but not least. . . Marriela! We had her Parent Teacher Conference this week. She is actually doing very, very well. The running commentary was “If she could just sit and focus for a even a few seconds, she’d be doing even more.” But despite her distractibility she is making wonderful progress. We even found out that she never wets at school and uses their potty daily with almost 100% success!! Peter and I were dumbfounded! LOL So now I send her to school in “big girl” underwear and she has been coming home dry every day. Tonight she even voluntarily went to the potty and peed!! We are so excited. Hopefully with some control over things like her feeding, toileting and dressing skills, she will improve in the behavioral and impulsivity departments as well.
Other news. . . Tray was approved for his trip to Disney World. We are hoping to go next month sometime in case NYC wants him down there for the work-up in January. He’s also pretty stable right now and I want him to go while he can tolerate the activity level and even the heat and humidity of Florida.
Oh yeah, it’s SNOWING here tonight. Ughhh. We have a winter storm warning for the rest of the night and into tomorrow morning. Kids only have a half day and already are praying for a snow day. I told them not to waste their prayers on a half day snow day! LOL
Peter and I are doing great. Peter’s whole family and my father are coming here for Thanksgiving. Peter’s mom, has finished her last chemo and the scans done last month showed that, though not all gone, the cancer had remitted considerably. She was both relieved and excited that she is now done. What ever happens now is in God’s hands. Thank you for your prayers and please don’t stop. We want her to have COMPLETE healing of all of her liver and lungs so she will be here to be the children’s Grandma for a long, long time.
Take Care and God Bless,
Renee
Friday, November 4, 2005 11:18 AM CST
Hi everyone!
Trying to keep up with the updates. LOL
Uh oh. . . baby is starting to stir. . . well, gotta few minutes before he's all the way up.
OK, this will be quick.
Trayvon: First - it will be Trayvon's 7th Birthday on the 7th of November !! It's his lucky year. Next - Holtor results are in and he is having very significant variables in his heart rate. He went from 45 beats a minute to 136 depending on what activity level he was at. I was NOT comfortable with the 45 at all, but the doctor only sent a letter so I didn't actually get to talk to him about the results. I'll be doing that today though. He wants to see what happens to Tray's heart rhythm off of the Digoxin. I'll a bit nervous, but there is nothing I can do about it right now so we'll just take it one day at a time. Otherwise, though, Trayvon is doing WONDERFUL!! To look at him you would never know anything was going on! He got a wonderful report from his teachers at the parent teacher conference. He is reading well below average, BUT she really thinks that this will change. Remember, Trayvon has had 2 strokes following his open heart surgeries, so we are not suprised at all at some academic delays. We are thrilled that he likes school and is in fact learning a great deal! We are hoping to go on his Make A Wish trip to Disney World the second week of December (week of the 5th). The wish granters are coming out on November 14th to let us know all of the details. YEAH for Tray!!
Joshua: Seizures are an ongoing bothersome issue. He had 4 more at school yesterday and this is with the increase in his meds recently. I have a call into the Neurologist for this issue. I don't know what else they will offer him. He has also been very moody lately and not nearly as energetic and outgoing as he used to be and I don't know what the cause is. Other family members are noting it as well. One more puzzle to solve. Good thing I like puzzles! LOL
Annette: Is thrilled to death because the plastic surgeon is very interested in her case and has set up an appointment with us for December. She is just so happy to know that she will someday have a smaller front and back and hopefully will one day be free of the constant backache she has. I was so happy too for her. I know she really needs the surgery and I didn't want to have to drag her all the way to NYC for something that I knew could be done much closer to home.
Marriela: Developed another nice sized cold. But she came out of it so far with just a couple of days of wheezing (which were easily controlled with the nebulizer meds). YEAH. She is also STILL BOTTLE FREE!! She now sleeps through the night with only an occasional awakening. She however, lost a bunch of weight because she won't drink her formula in anything else but the bottle. She is eating a lot more, but you can see her thinnning down quite a bit. Yesterday she weighed 34lbs so we will watch her closely to be sure she doesn't lose to much.
Cody: And last but not least the little "bear". He has had a rough couple of days. Apparently MY dairy intake has prevented HIM from pooping. So now, much to my great dismay, I am on a dairy free diet. He has begun to finally have some bowel movements (though still straining A LOT) and I think we'll be back on track by tomorrow. I also had to take him to the doctor on Wednesday. I was worried because one of his testes looked swollen. I was relieved to hear that he has a common problem called a hydrocele (fluid around the teste) that usually corrects itself with time. He's still on the medicine for his thrush and last night he came down with a whopper of a stuffy nose that kept us both up ALL night long! He has as much luggage under his eyes now as I do LOL.
I don't know if I mentioned it or not before, but my beloved pet bunny, Willow, passed away about a week ago. I was not surprised, as he had stopped really eating and drinking, but still greatly saddened. He was the rabbit that some of you may remember I had to take and have his leg amputated after he broke it in three places and it didn't heal properly in the cast. He went through a lot in his 8 years.
Peter's mom could use your prayers. Today she had her scan. We don't have the results yet so please pray that the tumors in her lungs and liver have all disappeared!! She won't go on to have any more chemo if the liver tumor hasn't shown some additional response (it showed minimal after 2 rounds). We are hoping to have the WHOLE family here for Thanksgiving to celebrate great news.
Peter and I are doing well. Peter just finished his last class with another A and finished out with a 3.8 average. I am very proud of him! He is taking the boys to a Syracuse Game next weekend. Then the following weekend will be Trayvon's big birthday party with all of his friends. Then Thanksgiving, and then I am going out to my Mother's house to have a late baby shower for Cody with her side of the family. After that we leave for Disney World, then it's Christmas just a few short weeks away!! Where in the world did this year go!??? It's hard to believe that I discovered I was pregnant in January and that is almost a year away already, I remember it like it was yesterday!
Well, until next time!
Take Care and God Bless,
Renee
Friday, October 28, 2005 9:22 PM CDT
Hello everyone!
Hope this update finds you well and happy. There are many children I am following via other caring bridge sites that are really struggling with life, literally. I can remember so vividly being there myself and it brings great sadness to me to see so many other parents suffering as they watch their children suffer. I, however, have the amazing blessing of having children who. . . by all accounts should not have. . . survived their illnesses. For this I pray for each and every one of these families. However, as we all know, it is not to be that all children will survive. That is a pain that I do not know if I could bear, at least not with any dignity or strength. Please keep Maddie, Lindsey, Ashleigh, the Bennet children, Katia and Maya in your prayers this evening. They really could use all they can get.
Ok, how the heck are we. Cody Bear is doing excellent. As long as you count eating, sleeping, pooping and more sleeping as great. LOL He’s already 6 weeks old and though I am getting over my hyper-emotional status, I still cry with each week he ages. He is almost double the size he was at birth, though he is still “small” he will never be that small again. Amazing isn’t it, how quickly you forget so many things with each passing day. I can’t IMAGINE him any smaller than he is now. I can’t remember exactly what he felt like in my arms anymore when he was first born. So we have pictures. Oh good Lord do we have pictures!!!! LOLOLOLOL His scrapbook is further along than Tray’s and Marriela’s simply because I have so many pictures of him!
Joshua saw his eye doctor and got a wonderful report. I was worried because Joshua seems to squint all the time now, but he said that he couldn’t find any medical reason for it and it may just be a passing phase. So now we don’t have to go back for one WHOLE YEAR!! Yipppe, another doctor moving down the list. Tomorrow he gets his Lupron injection and Flu shot. Poor thing.
Marriela has had a big change. . . She is now working on being BOTTLE FREE!! We are also working on toilet training, but that isn’t going to happen as quickly as the bottle breaking. Tonight is night number 2 without her bottle of milk. Yesterday Peter and I took her out to Toy’s R Us to pick out her own “big girl sippy cup” and her own “big girl potty”. She chose a set of Dora the Explorer cups. Last night was her first night without her bottle. We did give her a cup of water, a small dose of Benadryl and ran her ragged for about an hour before bed, to try and make it as painless as possible for her. All was well until 12:30am when she awoke yelling for “macaroni’s” and “mook” aka Milk. We brought her in to sleep in our bed to see if that helped and sure enough it did. She made it through night number one without a bottle! Yeah! Wish us luck tonight. LOL
Tray is doing well so far without his Digoxin, but the best part is. . . he hasn’t thrown up AT ALL since stopping it! I think we have answered the question as to whether the Digoxin is the source of stomach upset or not with a resounding, YES! LOL So we keep our fingers crossed that he doesn’t develop any abnormal heart rhythms without it. Otherwise he is doing fantastic right now and eating like a horse!
Nettie is doing very well also. She is however, very moody, an unfortunate side effect of being a teenager. She is either sullen, brooding, silent or irritated in general. She takes virtually EVERYTHING you say literally and makes it all very personal. No more joking with Nettie right now! LOL But otherwise she is great.
And that’s all of them. And now a little Thought Moment.
Last night I was standing at our dining room table with Tray on one side, Joshua on the other, both doing their homework. Cody was against my chest in the sling and Marriela was sitting on her new potty. Peter was picking up Nettie from Casey’s Place (after school program). I was busy nursing the baby, helping both boys with their homework, cheering Marriela on for sitting on her potty , and making dinner for Nettie before she got home. I realized right then and there, that I was MEANT to do this job of motherhood. It is what God designed me for, it’s what my calling in life was meant to be. I love caring for my kids. I wish they didn’t have the struggles they do, but I think that I was meant to be in their lives to help them overcome those struggles. I thank GOD every day that he has allowed me the opportunity to be a mother, both to my homegrown and adopted children. It has definitely made me a better person!
Well, that’s all for now folks.
Take Care and God Bless,
Renee
Thursday, October 20, 2005 10:22 PM CDT
I left the old update down below so that you know what I'm talking about in this update LOL.
Well, after one heck of a scare, we discovered at the GI's office that Tray's weight check at cardiology was wrong. Their scale was WAY off! He was 23.3 kilos (actually he gained weight, not lost!) at the GI's office. So with that scare over we move onto the rest of his issues. The GI did feel though that the daily vomiting was not good for his throat and teeth and so put him back on Prevacid. The doctor agreed with me that it is probably the Digoxin causing the vomiting so we will have to deal with cardiology on that one. But with the Prevacid on board, his throat and teeth won't be damaged by the acid.
I did speak with Dr. Byrum (cardiologist) and he felt that it was time to try Trayvon off of the Digoxin again to see if in fact that is the cause of his vomiting. So as of 2 days ago, Tray is no longer on the Digoxin. Now we have to just wait and see if he is able to stay in a normal rhythm without it. Luckily, Trayvon seems pretty in tune with how his heart works and has been an excellent report when things are feeling "off". Since we are now experimenting with reducing meds due to their side effects, Dr. Byrum was ready to send the peliminary letter down to Columbia Presbyterian's transplant team. Other than that, we're doing fine!
The rest of the kids are great, except poor Cody who has a mouth full of Thrush. Started the Nystatin swishes a couple of days ago and have yet to see any real improvement. But we'll just wait and see. He's growing like a weed though!!!
Peter is down in Elmira with his mom who just finished another round of chemo. In addition, her brother just passed away from cancer as well, so he wants to really check on her to see how she is doing. It's hard to tell over the phone just how someone is. He'll be back tomorrow. He's also going down to Penn State to see the Homecoming game. They're having a GREAT season, and he's going with several old teammates, so he should have a great time.
Well, that's it for us!
Take care and God Bless,
Renee
(old update)
***UPDATE*******
Well, I never got to take Joshua to his appointment because Tray started complaining again at school that his heart was going too slow. So I took him right in instead to have another Holtor monitor put on him. While there we did a weight check and we were flabbergasted when we discoved that he has lost 11 POUNDS in just 3 weeks!!!! We now have an appointment on Monday to see the GI doctor to rule out a GI cause and to be RE-evaluated for the need for a feeding tube. I knew he was thinner, but not THAT thin! SIGH, poor Tray.
Well, that's it for now. I'll update on Monday when we hear back from cardiology and GI about what's the next course of action.
Renee
Hello everyone!
I can't believe how fast time is flying. It has been raining here for the past 5 days straight and will be happy when the weather starts to clear up a bit so we can get outside and do some yard work. One would think that while you're all cooped up inside, you'd get so much more cleaning done. . . NOT SO. As a matter of fact, the house has fallen further and further into disarray since there is nowhere to send the kids to keep the rooms clean! LOL
Let's see. Nettie went to see the ID clinic yesterday and as we knew, she is doing great. Her labs are wonderful and her evaluation the same. She had her flu shot (and she actually cried, I felt so bad!) as well as had new labs done. It was very frustrating because they had a very difficult time finding a vein on her. It took three sticks and A LOT of patience to get the blood to flow.
Joshua is going today for a follow-up appointment at the KNOT (Kids Now Off Therapy) clinic. I'll be very interested to find out how much he weighs on their scale, as he has been losing a lot of weight lately. Everyone who sees him comments on how thin he is now. Now mind you, he was QUITE CHUNKY before, so it's relative to the past Joshua. He doesn't look sickly or anything, just thinner.
*As I am sitting here, some poor schmuck was just pulled over in front of our house for speeding by the Village police. Hehehehehe
We did increase Joshua's seizure meds and the increase seems to be doing its job because he hasn't had any ofvious activity in about 2 weeks. If this holds him then he will have one more set of labs to determine what level his meds are at now and then we know if he needs to go up or down in the future. He's also getting his flu shot today.
Tray is, once again, the one I worry the most about! He woke up two nights in a row and told us that he thought he was going to die because his heart was to slow! How's that for an eye opener. Then yesterday he came home from school and apparently told Joshua that in school he thought his heart was going to stop. Joshua told me and when I inquired into what he meant, he said that his heart was just going to too slow. I have a call into the doctor of course, but this did not sit well with me at ALL! Otherwise, though, he is acting and looking great! So it's very decieving to see him and then listen to the complaints he has.
Marriela is doing well. Her asthma has improved nicely. Now the only issue we are dealing with is getting her toilet trained and off the bottle. She still takes all of her high calorie formula via the bottle and this is causing a long night of awakenings as she loses the bottle as well as some very, very soggy nights and lots of sheets and clothing changes. So that is this months big endevour with Marriela. LOL
And finally Cody Bear. He's doing great. However, he did have to go to the doctor for a nasty "rash" all over his face and neck and back. I thought it was prickly heat or an allergy to something I was eating. But apparently it is called seborreaha (spelling???) some or other. He has to have some steroid applied twice a day for a bit to calm his skin down. But otherwise he is great. He weighed 10lbs 10oz at his doctor visit.
We are pursuing Tray's Make-A-Wish trip sometime in the next couple of months. Peter's mom is having a lot of difficulties with the chemo she is getting for her lung cancer and we feel that we should be near by while she finishes her treatment. We did get good news though, that the lung tumor has shrunk considerably!! The liver tumor is still there and only had minimal change, but at least we know the chemo is working.
Well, that's it for now!
Take Care and God Bless,
Renee
Friday, October 14, 2005 10:01 AM CDT
***UPDATE*******
Well, I never got to take Joshua to his appointment because Tray started complaining again at school that his heart was going too slow. So I took him right in instead to have another Holtor monitor put on him. While there we did a weight check and we were flabbergasted when we discoved that he has lost 11 POUNDS in just 3 weeks!!!! We now have an appointment on Monday to see the GI doctor to rule out a GI cause and to be RE-evaluated for the need for a feeding tube. I knew he was thinner, but not THAT thin! SIGH, poor Tray.
Well, that's it for now. I'll update on Monday when we hear back from cardiology and GI about what's the next course of action.
Renee
Hello everyone!
I can't believe how fast time is flying. It has been raining here for the past 5 days straight and will be happy when the weather starts to clear up a bit so we can get outside and do some yard work. One would think that while you're all cooped up inside, you'd get so much more cleaning done. . . NOT SO. As a matter of fact, the house has fallen further and further into disarray since there is nowhere to send the kids to keep the rooms clean! LOL
Let's see. Nettie went to see the ID clinic yesterday and as we knew, she is doing great. Her labs are wonderful and her evaluation the same. She had her flu shot (and she actually cried, I felt so bad!) as well as had new labs done. It was very frustrating because they had a very difficult time finding a vein on her. It took three sticks and A LOT of patience to get the blood to flow.
Joshua is going today for a follow-up appointment at the KNOT (Kids Now Off Therapy) clinic. I'll be very interested to find out how much he weighs on their scale, as he has been losing a lot of weight lately. Everyone who sees him comments on how thin he is now. Now mind you, he was QUITE CHUNKY before, so it's relative to the past Joshua. He doesn't look sickly or anything, just thinner.
*As I am sitting here, some poor schmuck was just pulled over in front of our house for speeding by the Village police. Hehehehehe
We did increase Joshua's seizure meds and the increase seems to be doing its job because he hasn't had any ofvious activity in about 2 weeks. If this holds him then he will have one more set of labs to determine what level his meds are at now and then we know if he needs to go up or down in the future. He's also getting his flu shot today.
Tray is, once again, the one I worry the most about! He woke up two nights in a row and told us that he thought he was going to die because his heart was to slow! How's that for an eye opener. Then yesterday he came home from school and apparently told Joshua that in school he thought his heart was going to stop. Joshua told me and when I inquired into what he meant, he said that his heart was just going to too slow. I have a call into the doctor of course, but this did not sit well with me at ALL! Otherwise, though, he is acting and looking great! So it's very decieving to see him and then listen to the complaints he has.
Marriela is doing well. Her asthma has improved nicely. Now the only issue we are dealing with is getting her toilet trained and off the bottle. She still takes all of her high calorie formula via the bottle and this is causing a long night of awakenings as she loses the bottle as well as some very, very soggy nights and lots of sheets and clothing changes. So that is this months big endevour with Marriela. LOL
And finally Cody Bear. He's doing great. However, he did have to go to the doctor for a nasty "rash" all over his face and neck and back. I thought it was prickly heat or an allergy to something I was eating. But apparently it is called seborreaha (spelling???) some or other. He has to have some steroid applied twice a day for a bit to calm his skin down. But otherwise he is great. He weighed 10lbs 10oz at his doctor visit.
We are pursuing Tray's Make-A-Wish trip sometime in the next couple of months. Peter's mom is having a lot of difficulties with the chemo she is getting for her lung cancer and we feel that we should be near by while she finishes her treatment. We did get good news though, that the lung tumor has shrunk considerably!! The liver tumor is still there and only had minimal change, but at least we know the chemo is working.
Well, that's it for now!
Take Care and God Bless,
Renee
Tuesday, October 4, 2005 7:13 PM CDT
Hi everyone,
Just wanted to let you know that all is going well here! Though I have now truly begun to understand what exhaustion is!! LOL Even my hair feels tired at times! :-) Cody is wonderful and it is almost impossible for me to believe that he is going to be a month old already this Friday. My heart hurts and is ecstatic at the same time. I don't want him to grow up at all. He is my very last biological child and it pains me greatly to know that I will never carry a child again. Again, I realize that alot of this is emotional turmoil from all of the hormones and pregnancy and such, but it still stings every day he gets older.
But, I should say that he is doing fantastic and has finally taken on a more normal human color rather than the nice yellow tint he had for so long! LOL He's still a sleeper though.
The other kids are doing well. Trayvon is still our worrisome one right now. We went in to have an emergency EKG last Friday because he is vomiting daily again and has complained several times that his heart "hurts". The EKG was normal. However, the doctor said that if his heart is leaking there is nothing left for them to do from a medicine point. So I asked for the referral to transplant to be expedited. I should be hearing from the doctor in the next day or two.
Joshua also had his EEG and did great. The doctor stated that there was no change in the pattern of activity so he is going to increase his med, Lamictal. We started this last night and hope to see some improvements in the next couple of weeks.
Marriela started to slide backwards with her asthma control again after the steroids ended, but with some more nebulizers and adding back her allergy med, we seem to have halted it in its tracks! YEAH!! She's been going to school everyday and doing great there.
Nettie is also doing great. I have a phone conference with her teacher tomorrow morning. I already have been given the heads up by Nettie's nurse that the conference is going to be ALL good news! LOL I LOVE those kind of calls.
Well, that's all of them hehehehe.
Take Care and God Bless,
Renee
Sunday, September 25, 2005 1:24 PM CDT
Hi everyone!
Well, Joshua is now officially 10 years old!! And Cody is now just over 2 weeks old! He is doing wonderful. He has really just begun to have more awake periods in the past 36 hours or so. The kids are really enjoying him, especially Nettie. She really likes to play the role of "mother" and is quite good at it I must admit.
I can't believe Joshua is already 10 years old! It doesn't seem possible that he has been through all that he has in just that short amount of time. But then when I think of him as an infant I can't believe how MUCH time has passed! I look at him and realized that he will be 20 years old when Cody is the same age as he is right now. That's a very eye opening thought. My children are wonderful and I hope that Joshua is granted all of his desires, wishes and successes in life.
On the medical front. . . He is now having more and more seizures again. So on Friday we took him in for lab work to check his med levels and tonight I am taking him out to Rochester for a sleep deprived EEG. We stay at the Ronald McDonald House because he has to stay awake ALL night so that he literally falls asleep in the chair at the EEG. This is NOT FUN FOR ANYONE!! I am taking just Joshua and Cody this time. Wish me luck keeping my 10 year old child up all night, when I don't even know if I can keep myself awake! LOL
As for the others. . .
Let's see, Marriela caught a cold on her very first day of school and it quickly went to her sensitive lungs giving her all kinds of trouble. Now we are home on 5 days of high dose oral steroids, inhaled steroids, Xopenex and an antibiotic for double ear infection. She is just now begining to sound a bit better and she's been on the steroid for over 3 days! Hopefully this is not a sign of the winter to come. It's been difficult keeping her away from the baby because she is so inquisitive and wants to be such a part of the action. We are praying we have done a good job protecting him. I know that I have caught something and I CAN'T avoid being around him! LOL So we'll have to see if he cruises through this round of colds scott free or not.
Trayvon is doing well for the most part. He has begun to really trickle down what he eats again and he has vomitted several times again. However, his labwork done on Thursday shows that everything is in the normal range still, so there was no clear cut explanation as of yet. He has an appointment at the end of next month with cardiology to discuss the next step in the transplant process.
And Nettie. . . she is doing wonderful. She has started off to a great start in school. We also visited the pediatrician who agreed to write a letter to the plastic surgeons at Strong Memorial to see if they will take Nettie's case. We are hoping for a breast reduction and liposuction again on her buffalo hump on her back. Both of these issues cause her daily back pain and she is taking Motrin several times daily now just to stay comfortable. Say a prayer that they will take a chance on her even with her complicated medical history.
I am feeling great. I have had a bit of the baby blues and still have a hard time dealing with fact that I have had my tubes tied. I really thought it was what I wanted until I held Cody in my arms and realized that I had NO IDEA what I wanted. And now I have assured that I will never carry a child again. That is a hard pill for me to swallow right now, but with time and as Cody ages, I am sure these feelings will pass. But for now, they are quite powerful and seem to catch me at all different times of the night and day! LOL
Peter starts work on Oct. 1st (though he is in denial about it hehehehehe).
Well, that's it for now!
Take care and God Bless,
Renee
Thursday, September 15, 2005 8:00 PM CDT
Hi everyone!!
I had a whole update done and somehow it dissapeared into Cyberspace.
I'll make this short and sweet and do a better update when I resize this enormous picture up above! LOL
Cody Brian Curkendall has arrived! He was born 9-9-05 at 12:30pm via planned c-section. He was 7lbs 14oz and 21 inches long. He is happy and healthy though the day was not exactly the best way to enter the world. First my spinal never took all the way and I ended up needing to be put under all the way which meant he got sedated as well. AS a result he had a "Transitional" respritory distress and landed in the NICU for several hours as he straightened himself out. Then, once he was down in the regular nursery he just couldn't get himself warmed up after his bath. Due to all of these factors, I didn''t get to see him for almost 12 hours after he was born. It was terrible being all alone in the hospital and not even having yet to see my baby. But then he finally came to join me about 12:30am and he stayed and nursed with me for about 4 hours and then we got into the routine of being mother and son. My pain was also very difficult to control initially so I was very uncomfortable for a while as well.
But I came home on Monday and all is well. He is still jaundice, but as of today he looks better and will not need to go back in the hospital for the "bili" lights.
He is awesome and the kids have been great with him. Nettie is like a second mother and has been wonderful with me, wanting to help me all the time. Marriela is very excited by the baby, to a fault. She has to be monitored very, very carefully around him! LOL Joshua and Tray have just gone on living life. They stop on a regular basis to kiss his head and then go about their regular routines.
Medically, everyone is stable and I will update you all on the specifics in the very near future.
Thank you for your prayers!
Take Care and God Bless,
Renee
Monday, August 15, 2005 10:09 AM CDT
Hi everyone!
Oh my goodness, I am sooooo ready for Cody to make his appearance! I am huge (everyone who sees me thinks that I’m like 2 weeks overdue LOL), have lots of back pain, can’t sleep and now. . . Just really tired all the time. BUT. . . I do have a delivery date!!!! September 9th is the big day, unless he decides to come earlier, which would be just fine by me. I’m not really complaining, just expressing some temporary frustration Hehehehehe.
As for everyone else, they’re doing fine.
Marriela had her physical and is growing beautifully. She did have an ear infection though and we are now treating that, but other than that, she passed with flying colors. The doctor won’t consider addressing her hyperactivity until she is 5 and in kindergarten and she shows that it is affecting her ability to learn. I argued that it is ALREADY affecting her ability to learn, that’s why she is so delayed and she will be in special kindergarten because of her deficits. But alas, it is two different philosophies and the one that can write the prescription is the one that wins LOL.
Trayvon continues to do well on his meds. He is taking naps again, but in between he is FULL of energy. He is also doing well with “wanting” to eat. Doesn’t actually eat that much more, but at least he is asking for food on a consistent basis and eating some of everything we offer. He gets weighed each week now to see if he maintains or loses weight over the course of the next month. If he loses, we go to the g-tube, if he maintains, then we monitor. We haven’t heard anything from NYC yet, but then I didn’t expect to either. They still need to go back and review all of the data, the echo tapes, the doctor notes and then go through all of his stuff that they already have on him (that is where he had all of his surgeries done). So we’ll just wait and see what they think. And on a good note, his recent labs done on Thursday show that his kidneys are continuing to handle the higher doses of lasix and tolerating the Enalapril. Plus his Digoxin level is perfect!
Joshua is doing well. He hasn’t had anymore “big” seizures since camp. We saw the doctor and she checked his ears which look fantastic now, so the antibiotic did its job. He is still having lots of little seizures and I don’t really know what to think of that. But all in all he seems to be doing well still. He is going to be spending some time each week going to Casey’s Place, the respite home he LOVES! Today he and Nettie are both going and they are going fishing. One of Joshua’s favorite field trips, and one of Nettie’s least favorite LOL.
Nettie is also doing well. But boy did she fall behind in her exercising while at camp!! She came home and all of the hard work that she and the PT had done to get her back in shape had all gone to hell in a hand basket. She was winded by the end of our driveway, let alone making it around the entire block!!! LOL So we are back to daily walks and doing her crunches and such. Hopefully we will get back what we lost as quickly as she lost it! She is working hard in speech to learn how to tell time using an analog clock (non-digital). She has a very, very poor sense of how long things take and can’t really tell time, even on a digital. So we thought this would be a great goal this summer for her to do. Her OT is working on her “typing” skills. Annette personally thinks this is a waste of her time since she is convinced that her “writing” is just fine. However, to those who don’t know what Annette is “writing” about, it’s virtually illegible and her spelling is ATROCIOUS! LOL So we have convinced her that with time, she will like the typing better than writing. Only time will tell if we are correct on that. LOL
Other than that, Peter and I are going to the Village Board Meeting tonight to ask their permission to have Nettie’s wheelchair ramp built on a portion of their property. I don’t know if I mentioned this before or not, but the front half of our lawn is actually Liverpool Village property and therefore we need their permission to build the ramp out to the sidewalk. We have been warned by many, many people that they DO NOT like to grant such permission because they feel it opens the door to many other issues and will allow other Village residents to build on Village property too. I think that is the most ridiculous thing that I have ever heard and if they can’t understand that this is a WHEELCHAIR ramp for a disabled CHILD and not some hottub to have parties in. . . then they will have to discuss it further with our lawyer (which by the way, we don’t’ actually have, but will make sure they think we do Hehehehehe).
I also wanted to update you on Peter’s mom. She does, in fact, have a highly aggressive form of lung cancer. We are devastated but not surprised. Neither was she. Tomorrow Peter goes down to be with his parents as they meet with the oncologist to go over what options there are for treatment. The good news is that Mom wants to fight and we are going to be there right by her side. Please pray that we make the right choices for her treatment and that the treatment works.
Well, that’s it for now!
Take Care and God Bless,
Renee
Sunday, August 7, 2005 9:05 PM CDT
Hi everyone!
Well, the kids are back, the roof is on, the house is painted. . . Well, it’s in the process of being painted. For some unknown reason (Murphy’s law or something) everything we have done, takes 3 x longer to complete. :0) but none-the-less, it gets completed. LOL
The kids had a great time at camp. I was most worried about Trayvon, due to the new heart issues, his eating, etc. , but he did FANTASTIC!!! Actually, I got two nerve wracking calls about Joshua instead. The first one came on Tues as Peter and I were arriving in Lake George. They wanted to know, “How many bruises would I say Joshua came to camp with?” Hmmmmm, now let’s see, how many of you out there count your kids bruises before sending them off. Obviously he didn’t have enough for me to be concerned or I wouldn’t have sent him. However, the nurse explained that he had a lot of bruising, but he only had it on his legs (they did a head to toe check) and there was no pettichia (small red spots that indicate a clotting problem). So I agreed with them that he probably just has been having a lot of fun and banging himself up good. All is well, we settle in and then at 11:00 Tuesday night we get another call. This time Joshua has had a very long and rather intense seizure (for him anyways). He slid off his the side of his bed and was in a “tonic” seizure for over 3 ½ minutes. They took him to the infirmary where the doctor monitored him as he came out of the seizure. He had blue lips during, but afterwards he was fine. The doctor did another head to toe check and found 2 severely infected ears. This was probably the cause of the seizure. So they started him on antibiotics. I received no more calls that night or the next day. We went to the Talent Show at the camp Wednesday nite and when we saw Tray we had to laugh out loud!! He was SURROUNDED by girl counselors, rubbing his face in their hair, laying in their laps, and just in general eating up oodles and oodles of attention!! He was in seventh heaven! He hardly even noticed our arrival and didn’t have any interest in joining us! LOL It was wonderful. Nettie, as always had made lots of new friends and the counselors we talked to all just raved about her. One commented that she was as beautiful on the inside as she was on the outside and that she was amongst her favorite campers ever. That was such a heart warming comment and I will treasure it for ever. Not to mention. . . 100% accurate. Then we found Joshua. I knew right away he was “off”. He was clammy, didn’t seem “aware” of us as we talked to him and was very, very nervous acting. We asked him how he felt and if anything was wrong and just said he didn’t know what to do for the talent show. We assured him he didn’t NEED to do anything. It was just for fun. Then as we watched Trayvon go out and ham it up on stage, I noticed that Joshua was no longer with his cabin. I taped a few of his cabin mates doing their “talent” and then went off in search of my baby. We found him sound asleep in his cabin with a counselor. The counselor stated that Joshua just suddenly felt “tired and needed to go to sleep”. We are fairly confident that he was having seizures throughout the day and they finally just caught up to him. We kissed him good night and went back to find Nettie and watch her cabin do their talents. The doctor went down and checked on Joshua again for us before we left for the night and she said he looked and sounded fine. The next morning when we arrived, he informed us that he did wake up and saw the very, very end of the talent show and did the “wish boat” ceremony and awards ceremony. So I was happy to hear he didn’t sleep through two of the best parts of his camp week.
Now that they are home, Joshua is struggling with a bad cough, still taking antibiotics for the ears and his nose is very raw from all the blowing. Nettie has developed a very bad cough since being home and Marriela was wheezing badly yesterday. Tray was the only one acting fine, and then BOOM. . . Today he suffered a severe Migraine attack. He was at the playground with a friend and the friend’s grandmother. We got a call that he was writhing in agony and kept saying his head hurt. As soon as he walked in the door, he ran to the bathroom where he vomited profusely. I gave him his motrin with a pepsi (for the caffeine) and laid him down with a cool cloth. He fell asleep within minutes. Peter now also has a sinus infection. Alas. . . The good health had to end. LOL
I should also let you know that today is MARRIELA’S 3RD BIRTHDAY as well as her BAPTISM DAY!!! We combined the two events so family only had to travel one time. It was a wonderful day and Marriela had a great time. Though she really doesn’t understand the entire birthday routine, she enjoyed being the center of attention!! Happy Birthday Angel!!! This was her first real birthday party because she didn’t get one at her old foster home when she turned one, and last year, Peter’s dad was severely ill and we weren’t able to get home for an actual “party”. So we went all out this year!!
Yesterday I was thrown a wonderful Baby Shower by Nettie’s nurse, Ginger and Peter’s sister, Brenda. It was a lot of fun and I received some beautiful things for Cody. Thank you Ginger and Brenda!!!!
And last but not least, we need to ask for some prayers for Peter’s mom. Tomorrow she is having a lung and liver biopsy to determine if she has lung cancer. We are very, very concerned and could use all of your prayers to help make this a positive (hoping for a fungal infection - if that could be called a positive) instead of the potential terrible news. Peter’s parents are both fragile in health. This is a huge blow to us. So if you could spare a prayer or two we would be greatly appreciative!
In our thoughts and prayers,
Renee Curkendall
Friday, July 29, 2005 12:09 AM CDT
Hi everyone!!
Well, they’re off. Today we dropped off Tray, Joshua and Annette at the bus to go to Camp Hole in the Woods. It was so strange to be in the car with them all, and then none. Joshua and Tray were so cute, as they insisted on sitting next to each other on the bus. Nettie made a pinky swear that she will be nice to her brothers this year (this was a problem with Joshua in the past couple of her “pre-pubescent” years). Marriela wasn’t with us because she went off to summer school this morning so it was just Peter and I in the car. Very strange indeed. Poor Marriela isn’t going to know what to do for a whole week without her Trayvon to torture!!! LOL
Let’s see, where did we leave it with the kids last update. Oh yeah, Trayvon.
First let me just say that he continues to do well on his current meds. However, we did go and see the pediatrician for our monthly weigh-in and he was down another 1.5 pounds. So next Friday we go to GI to discuss our plans and to have his NG tube placed. I haven’t the heart to tell him, so we waited until he comes home from a fun-filled week at camp. After we get the NG in then we make an appointment with surgery to get the G-tube placed ASAP so that he doesn’t have to go to school with the tube in his nose. I would also like very much for it to be done before the baby comes. That way we’re not scrambling to find a babysitter for the new baby right after he’s born so that I can stay with Trayvon. In all reality, this has been coming for sometime now, it’s just been harder for some to admit than others (like his pediatrician), but once she saw he lost over a pound AND he’s actually eating now, then she realized we are falling further and further behind the eight ball. Sigh.
Joshua is doing very well. He is thrilled about camp! We were just commenting the other day on the fact that we haven’t seen any “real” seizure activity in almost a month!! The latest increase in his med, Topomax, has made a nice improvement. YEAH! He’s been enjoying summer school and recently got his new ear molds made. They are green, but not “green”. I’d call them more of a “moss green”. They are really nice and go great with his hair. LOL
Nettie is doing really well. She is walking more and more with her PT. He even said if the weather continues to remain cooler like it is, he thinks they’ll be able to make it around 2 FULL BLOCKS in the half hour session!! Truly amazing, considering just 6 weeks ago she was asking to rest every 15 - 20 feet because “her heart was beating to fast”. But when we would check her heart, all was fine, it was in the normal range, Nettie just isn’t used to her body working so hard! LOL She did her infusion yesterday and this time it was a lot more painful than usual. I think that all of the new exercise is making her muscles taughter and there is less body fat, so the fluid collects on the top of the muscle, making a HUGE lump on both of her thighs. It is absorbed by morning, but it has been getting gradually more painful each week. I think we will have to talk her into using her upper arms as a new location for the infusions for a while to let her belly and legs rest. Other than that though, she is doing really well.
Marriela received her letter of acceptance to her new pre-school program! She will be going 5 days a week for ½ days. She’ll be thrilled to get on the bus everyday just like her big brothers and sister. We also found a daycare for her to go to after school for about 4 hours a day. This way I can get some rest with the new baby, and she will have fun playing with kids her age and not being told to “shhhhhh, the baby’s sleeping” all day long. She is a serious social butterfly! In addition, I’ll be able to still get the kids to and from appointments without exposing Marriela to the clinic settings, because Peter is going back to work and he won’t be here to watch her anymore. We did the same thing with Trayvon and it worked out wonderfully! He’s still friends with some of the kids at his old daycare.
Ok, that leaves Cody. Well, I see the OB today at 3:00 so I don’t have any new info. I can tell you that I saw the physiatrist and he had all kinds of wonderful things (thick sarcasam there) to say about my stance and pelvic bone placement. Apparently I have been suffering from a significant left sided pelvic tilt which has caused one of my legs to be shorter than the other (dang if I ever noticed) resulting in all of my hip and back pain all these years. I am now in PT and they got me a TENS unit for pain relief in my upper back (I’ll be able to use it on my hips too once the baby is born). I also go and do special exercises and today will get a special belt used to help stabilize the pelvic bones so the can’t “slip” anymore than they already have. It will also work as a sling to hold up my ENORMOUS belly (they’re actually betting at the PT office that I’m having twins, despite the fact that I assured them my ultra-sounds have all only shown ONE baby!) . That’s how big I am. I have mothers of twins asking me how much longer and when I tell them just under two more months, they all gawp at me and tell me I am huge for only one baby. I assure them it’s the baby that’s huge, not just me. LOLOLOL So I am anxious to see my next ultra-sound just to take a picture into them to show them they are all WRONG!! God may have a sense of humor, but if it’s twins, I won’t! LOL
Peter’s new job starts on the 15th. They just picked the new office space and it’s wonderful because it is literally only 5 minutes from our house. He will be allowed to work from home if there are any medical issues with the kids going on and the new company is completely understanding of our unique circumstances when it comes to health insurance, so they are looking for the best.
Ok, that’s it for now! House is getting painted next week while Peter and I are away at Lake George (just so happens we’ll be right down the road from the camp the kids are at. . . No coincidence there. LOL). I am excited to come home as a family and see the “NEW” house!
Take Care and God Bless,
Renee
Friday, July 22, 2005 7:17 PM CDT
Hi everyone,
Just thought I’d try to get a quick update out before Peter and I leave tomorrow for a weekend of R&R.
First, and most exciting, is that Tray is FEELING BETTER!!! The meds are doing their job. We did have our first lab draw and it was wonderful, therefore, so far, the meds aren’t hurting his kidneys. We are still being referred for his eval in NYC for transplant, but in the mean time, he’s doing much better. His energy level is back and he is ASKING to eat!! We are going to the pediatrician on Monday to discuss the need for his feeding tube. I still think he needs it, even though he is eating now, it is virtually impossible to determine how long and how well he will continue to do this. He still isn’t growing and his weight is still not going up, so he must be burning more calories than he is taking in. But I’ll talk with Dr. Jones on Monday and we’ll come up with a “plan of action”.
Speaking of Trayvon, I should also let you know that he is proud as punch over how well he did at swimming lessons. He didn’t quite make it to Level 2, but did pass all but 2 objectives (out of 10). He will do 3 weeks of lessons next year (this year he only did one due to camp timing and other activities) so he should move right along next year! Way to go baby!
Joshua saw the ID doctor who went over his lab results with me. He had a wonderful response to his immunizations he just received and still had very nice coverage from his slightly older ones. This leads them to believe that his system may be repaired. Now only time will tell for sure. He did say that when we are ready, we can probably go ahead and stop his prophylactic antibiotic and see what happens. Though this makes me nervous, I think I am almost ready to do it. So all in all, GREAT news for Joshua!! Now he has to go and get his MMR and Chicken Pox vaccines next month. Then we wait and do his HIB and Hep B series and he’ll be all caught up.
Nettie is doing wonderful. She has a busy summer of volunteer work at the local library (only 4 blocks away). She has been going for long walks daily with her nurse and her PT comes 2 x weekly and makes her walk ALL THE WAY AROUND THE BLOCK each time. She is pooped when she gets back, but her stamina is better and better each day. If only the heat would give a us a break, I think she would be doing even better. She didn’t lose any weight at her weigh in at the hospital. At first she was very disappointed, but the Nurse Practioner, made several wonderful observations that we hadn’t really noticed. 1. Her hump on her back (due to meds) is considerably smaller - the only thing different is her new exercise program! 2. Her weight gain is probably due to muscle mass increase - she has little tiny calf muscles and she can now do 40 crunches so she definitely has gained stomach muscle. This made Nettie practically giggle with delight! And 3. Her face and such don’t look any larger which is what would happen if she had truly gained a bunch of weight. So after this discussion, Annette was much happier with herself. YEAH NETTIE!! She is doing great health wise. Her OT is working on keyboarding skills and improving Nettie’s speed of writing this summer. Her Speech therapist is working on telling time using an analog clock (vs. digital) so that she can have a concept of time. It’s funny, because Nettie still thinks tomorrow is a week away, but next year means tomorrow. LOL All in all she’s busy and happy.
And Marriela. She’s going to school 3 x weekly for half days and then comes home and sleeps for 3 hours due to the heat. But then WATCH OUT. . . She is raring to go and has more energy than anyone I know!! We’ve been having our roof redone which has taking a lot longer than we anticipated, so the kids haven’t been able to play outside due to falling debris, tools, and supplies that are all over around the house. She has been BEGGING to go outside and finally tonight, the roofers finished. She was the first one to say goodbye to them and then promptly told me to open the door so she could go out and play! LOL She is doing very well health wise as well other than some eczema issues.
Cody is still VERY active. I am almost positive at this point that he is breech, due to the fact that almost all of the kicking is low in my abdomen. I see the doc again next Friday and should know when my next ultra sound will be. I am also seeing a physiatrist on Tuesday due to severe hip and back pain. I am really hoping he’ll just write for some heat therapy and physical therapy until the baby is born. I am virtually sleepless at night due to the pain.
Let’s see what else is going on. Oh yeah, mentioned the roofers (finally, we have a wonderful new roof), we are having the house painted next week and we had the foundation all shored up with new masonry work. It’s looking really nice. We were going to have a new deck built around the pool for easier access for Nettie and the kids, but since summer is more than half over, we decided to do our living room instead. Boy am I glad Peter talked me into that decision!! We had wall to wall carpeting in our living room, WHITE plush. Not good with kids, it was a disgusting mess and nothing I did made it look better. So we had a friend come over and he discovered amazing hardwoods underneath. So he ripped up the old carpet and finished the floor, it looks amazing. Then we bought a new area rug and some new furniture with the deck money and I feel like a million dollars in our new living room! But, alas, the home improvement $ had to come to an end at some point, so that is all we’ll be doing for now.
Peter does have a new job and will be starting officially on August 15th. It is very similar to his old job, but now he’ll be working with only 4 people, have his own office, make much more $ and have liberal family time! So this is really a wonderful thing for us.
Well, that’s it finally. So much for the fast update! LOLOLOLOL
Take Care and God Bless,
Renee
Tuesday, July 12, 2005 7:26 PM CDT
Hi everyone,
Hope all is well with our visitors! It’s still warm, but not nearly as humid and. . . . . . . The pool is blue again!!! I think our algae problems are behind us! Though we have been so busy, there hasn’t even been anyone in the pool! LOL
Today Marriela, Tray and Joshua all had dentist appointments. After the appts, Joshua went off to College for Kids (he’s doing it for a week in the afternoons) and Tray went to a cardiology appointment.
Let’s get that one out of the way first. It wasn’t the best of news. Tray has continued to experience virtually no appetite, needs to sleep all the time and is breathing very hard most of the day and night. At the appointment we discovered that his blood oxygen saturations are only running at 87% (his normal is the same as yours and mine - between 95 & 100%). He is still Tachycardic (heart is beating to fast all the time) and he has edema in his lower extremities despite the very high diuretics. So we had an echocardiogram done where it was revealed that his primary valve is leaking severely and his heart function in general is poorer. This is probably a direct result of taking away his Enalapril and his Digoxin. However, the Enalapril is what made his kidneys so sick a couple of months ago and the Digoxin then built up to toxic levels in his system causing (at least we think) the severe cardiac arrythmia that landed him in the ICU and the need to be shocked back into normal rhythm. But we have no recourse but to start him on these two drugs once again at lower doses and watch him carefully. He’s in moderate Congestive Heart Failure right now and we need to reverse the process before it gets any worse. At this appointment the discussion of “transplant” was finally brought up by the doctor. It is still a ways away for Tray unless he gets into severe trouble quickly. But he wants to send all of his stuff down to Columbia Presbyterian hospital to be reviewed by the transplant team. They will then call us to come to NY and do a transplant “work-up” to determine if he is an appropriate candidate. Then, if he is appropriate, he will be listed at the VERY BOTTOM of the list. The doctor warned us that there is such a shortage of donor organs, that you now have to be living “in” the hospital and dependent on at least TWO IV meds in order to be placed at the top of the list. I pray that we are NEVER in that situation. But what really stinks about the whole thing is that the children who are stronger and healthier have to wait until they are at death’s door before they can even begin to be considered and then you have only a finite amount of time before you either get a heart or you don’t. . . It makes me sick even thinking about that for my baby Tray. So please pray that these meds help and don’t hurt his poor kidneys any more than they have.!!
So now we are back to talking to the pediatrician about doing the feeding tube to help him grow and get stronger. I think his heart is really in need of good nutrition and he just isn’t able to do it himself. Again, please pray that we make the right decisions in this area so that we don’t traumatize him yet we give him what he really needs.
Nettie and Joshua are going to see the ID clinic tomorrow. Nettie is excited to get weighed because she has been walking EVERY day to lose weight. It’s been 3 months since her last weigh-in because we don’t go for the monthly IVIG anymore. So it will be interesting to see what she weighs. I just hope she has lost even one pound or I’m going to have a very irritated child on my hands!! Joshua’s lab results should be in tomorrow and we will see how his immune system is functioning. I am anticipating good results! LOL If they are good, then we move ahead with some more immunizations and just keep following his responses to them over the course of time.
Marriela is doing great. She is more hyper than ever however. We don’t know what she is feeding off of, but her energy level in this blessed heat seems to be triple that of just a few months ago. In addition, it seems she has taken a likin’ to torturing her brother Trayvon. She hits him, pushes him, throws things at him. I feel so bad for Tray as he spends his afternoons dodging her blows and moving from room to room to play! We’re on top of her constantly but she has made it her mission in life to make Tray as miserable as possible the little stinker! So Tray has been getting a bit more mommy and daddy love to counteract the terrorism he is subjected to LOL.
The dentist appointment was ok. All three kids had way to much tartar on their teeth. Joshua has a bad baby tooth that he needs to wiggle to get it out so the adult tooth underneath can break through. If he doesn’t get it out, then we have to have it removed. Tray has two small cavities on each side of his lower mouth. I don’t have the heart to tell him so I’ll just wait until they call and tell me they have the appointment set up for him to come in. He did NOT handle the cleaning process with grace. He panicked at the sound of the tartar being scraped off of his teeth and starting crying inconsolably. I tried to comfort him but it only got worse when it was time to “polish” his teeth and she used the little sucky thing to suck up the water she squirted in his mouth. He panicked every time it touched his tounge, he thought it was going to suck up his tongue. Can you imagine a child who can’t even handle a dental cleaning going through a heart transplant!!!! EGADS! That is going to be a tricky one!!!
Marriela took ALL of her cues from Tray and announced loudly at her turn that she was done at the dentist and it was time to go home. I had to restrain her on top of Cody (in my belly) and hold her upside down so they could scrape her teeth and polish them as well. I don’t imagine I will EVER do another dentist appointment by myself again! LOL
As for me and Peter. I am doing great. I had my last monthly OB appt and now move to every two weeks. My glucose was perfect and other than needing a little iron due to a mildly low red cell count, I am doing fantastic. I will at some point have another ultra sound and can’t wait to see how much bigger he is!! Cody is very, very, very active! Peter is doing fine and possibly entertaining the idea of a new job with some old friends. I’ll let you know more as we learn more.
Well, that’s it for now. We have done so much, but with all of the medical stuff I run out of time and energy to let you know all of the fun stuff we do as well. Just know that our lives DEFINITELY ARE NOT run by the kids medical problems or anything else for that matter. We are always on the go and doing fun things with the kids. This past weekend we spent it down in Elmira going to a family reunion and relaxing at a hotel. We got some swimming in as well. Next week we are going to a water fun park and the kids are going to see Charlie and the Chocolate Factory. Tray has been taking swim lessons and will finish at the end of next week. Joshua and Marriela are both in summer school and like I said, Joshua is doing College for Kids after summer school each day for this week. The three oldest ones will be going to Camp Hole in the Woods the 29th through the 4th and Peter and I are going out to Lake George, on a “mini” vacation for two days before picking the kids up to bring home. Marriela is going to be staying with Nettie’s nurse (who by the way will also be her God-Mother after Aug. 7th!). There’s a lot more, but I’ll end here. LOL
Take Care and God Bless,
Renee
Saturday, July 2, 2005 6:56 PM CDT
Hi everyone!
What a beautiful day it was today. Only about 80 degrees, lots of sun and a nice breeze. So we packed a picnic dinner and loaded the kids into the car and went to a small county fair north of us. It was the perfect size fair and we only had to spend $40 total!!!! That included admission, 19 rides, 3 fried doughs, 2 waters and a lemonade (that was for me LOL)! Then we ate our dinner on a blanket next to the car before heading home. It was just a wonderful relaxing day.
Still working on the pool issue. A friend came over and informed us that a large tree near our pool is the likely culprit of most of our algae problems. It will continue to drop leaves in all season and that is where the algae begins. So we are now in the situation of having to call in a tree specialist to get the blessed thing out of our yard. It’s always something.
The kids are doing well. I think I told you that Marriela had been running fevers. Well they went away over the weekend but by Monday she was just MISERABLE acting. So I really thought she had an ear infection, off we went once we dropped the other kids off (Tray at day camp and Nettie and Joshua at Casey’s Place). Boy were we surprised when the doctor told us that the back of her poor little throat was loaded with BLISTERS!! She had the Coxsackie’s Virus aka: Hand, Foot and Mouth Disease. She was hurting so we started her on Tylenol and she got a lot better fast. Her blisters are almost gone now and she seems no worse for the wear.
I also mentioned Trayvon’s poor eating again. Well, on Wednesday night I took his heart rate while he was sleeping out of curiosity to see what it was. Again, I was surprised to find that his heart rate was between 130 and 180 while sleeping!! So I called the cardiologist the next day and we agreed to let him go to the last day of camp but to be in the office by 8:30am on Friday. He had an EKG and it showed a resting rate of 112 beats a minute (his normal is usually no more than 80, 120 only if upset). So the doctor is concerned that he has the atrial Tachycardia back again. But the EKG couldn’t define it one way or the other. So we also had lab work to see if his kidneys were doing ok as well as hooked him up to a 24 hour Holtor monitor. I am thrilled to say that his kidneys look GREAT!!! I was absolutely shocked to hear the great numbers. So now we have to wait and see what the Holtor shows us on Tuesday morning. If they can’t find the problem on the monitor OR if they do find the problem and it is atrial tach, then he will be readmitted for drug therapy to see if we can correct it without shocking him again. If the drugs don’t work, then back to the OR for another cardio version. I don’t know what will happen after that. Can’t think that far right now. But overall Tray is acting and feeling just fine. He doesn’t complain of any discomfort like he did last time so I just don’t know what to make of it. We did up his Lasix again to 40mg at night, so now he is back on his original dosage before his last hospitalizations (and he’s still waking up VERY PUFFY). I’ll keep you appraised of the situation as it unfolds.
Joshua went for his labwork yesterday as well. He had his titers drawn to his immunizations to find out how his immune system is responding overall. I am very curious to see the results of these labs!! He goes with Nettie to the ID clinic on the 13th so we’ll know then what’s going on with him.
Nettie is doing great and is happy that summer is finally here. . . No school!!!! She is looking forward to sleeping in for the next 2 months LOL.
I also went for labwork yesterday. I did my Glucose Challenge. That’s a challenge for several reasons! 1. The stuff is AWFUL to drink. 2. I HATE needles and was on the verge of a breakdown by time it was blood draw time. And 3. I lost the prescription and was in a total panic because I couldn’t get a hold of the doctor’s office and I only had 1 hour from the time I finished my drink to the time I got my blood drawn. Finally, with only 5 minutes to spare, the doctor’s office opened from lunch and the nurse faxed over a new script. I was terrified I was going to have to drink another bottle of that crap! LOL
I see the doctor on the 8th and will get the results then. Other than persistant back and hip pain, especially at night, I am doing great.
Peter, likewise is doing great. I realized recently that I hardly ever comment on my baby, Peter. He’s doing wonderful.
Take Care and God Bless,
Renee
Sunday, June 26, 2005 1:59 PM CDT
Hi everyone!
I see it’s been a bit since the last update. It’s still ungodly hot here. We are breaking all kinds of records. At first the heat wasn’t bothering me, but yesterday, that was a bit to much. I went to Joshua’s baseball game and Peter took Trayvon to his (they play at the same time but at different fields - and Tray’s field was not Marriela friendly LOL). I was fine until I got home. Peter actually relieved me from Joshua’s game after Tray finished his and I took the two little ones home to the air conditioning. . . And then I felt so ughhhh!! Joshua has been having a VERY hard time with the heat. At his game he became so red and disoriented and developed the tremors that his coach wouldn’t let him play anymore. He was out of it for a couple of hours after he got home too, until I forced him to drink 6 oz of ice water. Then he seemed to spunk a bit. Tray and Marriela on the other hand don’t seemed fazed at all by the heat. Nettie is like a vampire anyways. . . Heaven forbid you ask her to go outside with the family! LOL
Actually, Nettie is at Darien Lake, Six Flags all day with her girl scout troop today. Hopefully the heat won’t cause the girls to many problems. Nettie seems to do fine, other than beefing that it’s to hot, she doesn’t seem any worse for the wear after a day in the sun.
Marriela has been running a fever, low grade most of the time, for about 4 days now. I had thought her skin was just so hot from being out in the little pool all day because she is so dark skinned. But that night when I put the kids to bed, she still felt hot and boy did I feel bad when I discovered she had a 102 temp! So the next day we kept her inside most of the day and she still kept creeping up on the thermometer and today she is sleeping a lot. I am pretty sure she has an ear infection, because her lungs sound fantastic and she doesn’t have ANY other complaints or symptoms. So off to the doctors tomorrow.
I want to go jump in our pool, but we developed and algae problem the weekend we went away for my reunion because the chlorine got to low. So we have been diligently working hard to get it back to swimming condition. Tomorrow should be the final day and I’ll be the first one in!
We are looking to go do something with the kids today, but it’s so hot that I just don’t know where to take them. Maybe just a nice ride with an ice cream stop along the way. LOL
Joshua will have his lab work next Friday to check his responses to his latest immunizations as well as to some that he received last year. He has also definitely started puberty, but Peter and I have decided to just let nature run its course since he is now almost 10. Had it happened 10 or 11 months ago like we thought it was, then I would have asked to for the shots to stop it. But we don’t see the necessity to inflict monthly injections on him just so that we stave off what nature will eventually need to do anyways. So I am now watching my little boy go through the changes every little boy does. It’s both comforting and scary to know that he has NO idea that his body is changing. It’s actually very humorous to have conversations about things like deoderant and acne cream! He’s such a little boy still that these concepts are just not there! LOL But all in all, it’s definitely mommy having the most difficulty with this newest transition. . . L
Tray’s wonderful eating habits have all but disappeared. He is barely eating anything at all and I am afraid that we are going to lose all of the wonderful ground that we had made! He had to go to the emergency room last week for a quick visit. He woke up and I went to hand him his clothes and was astounded to see his left eye completely swollen shut. He said to me “I think I punched myself in the night because I have a black eye!”. I’m thinking, “ummmmm no buddy, that’s nasty looking and we need to see the doctor. . .” but I waited an hour to see what if any improvement occurred. Unfortunately there was minimal improvement so off to the ER we went because our regular ped is off on Thursdays. Come to find out, it was just a big reaction to a little mosquito bite! They gave him a big dose of benedryl and sent us on our way. He did need to take the Benedryl for almost 3 days though before he could wear his glasses because the swelling was so big! Now he’s waking up puffy again and I think he needs to have his diuretics increased. But he sees the cardiologist on the 12th of July so I think I’ll just wait until then to address the issue. I think we should do some lab work first to be sure his kidneys are still doing well before making any med changes.
Marriela is still going strong and doing great except the recent fever. She’s eating well and definitely getting taller. She has her physical the day after her birthday in August. I can’t wait to see how big she is compared to her last physical! LOL
Nettie likewise is doing very well. She is going to volunteer at the local library 3 hours a week (it’s only 3 blocks away, so she’s going to “walk” down with her nurse) and we hope to enroll her in a program down in the city for kids her age with disabilities every Tues and Thurs. The do a lot of field trips and the majority of the kids are black, something Nettie really wants to be a part of right now. I’m mailing her application out tomorrow so we should hear back soon. I am also working hard to get all of the paper work in order to file a building permit and variance request so we can get her ramp built. We are storing her power chair at the school for the summer because there is no way for us to get a 300lb chair in the house nor can we transport the thing anywhere. So hopefully by the end of the summer we will have a new ramp.
Well, that’s it for now. Cody is VERY, VERY active in my belly and spends most of his day kicking the crap out of me. I look like I have an alien inside of me the way my belly waves and bumps all day long!! Hopefully he’ll be big enough soon so that he has to slow down a bit. LOL I do my glucose challenge this week but I’m not expecting any surprises there. I am no sleeping on the couch because my hips are really bothering me at night. But all in all things are going great.
I’ll update more in a little while!
Renee
Tuesday, June 14, 2005 7:55 PM CDT
Hi everyone!!
Whew it's been VERY hot here!!! I am soooo glad we got the pool last summer. The kids have really needed it to handle this heat and humidity.
Joshua and Tray are both wrapping up their baseball seasons. Both boys have done FANTASTIC despite everything that's been thrown at them. Joshua is a totally different child than he was 2 years ago. His seizures are so much better controlled and he has so much more energy!! He actually runs for the ball, he hasn't napped once during a single game and he actually WANTS to go to his games. Tray has really taken a liking to the game of baseball and, after his little heart issues resolved, he has had a GREAT season. Tonight he hit a line drive right up the third base line and was proud as punch that he made it to first without getting thrown out. The added benefit of the boys playing baseball, is that Marriela runs herself ragged with the player's siblings and sleeps like a charm!! LOL
Health wise, they are all doing great! Nettie has been having some knee pain but we think we've linked it to the wearing of some new sandals I bought her. She can really only wear sneakers if she is going to be walking at all. Her ankles are completely loose and she has to "flop" them into place when she walks, making sandals and shoes difficult to maneuver. So we'll but a hold on the sandal wearing for a bit. Joshua had his physical today. The doctor was very happy with how he looked. His weight is down 7 pounds since starting the Adderal (I really think this med has helped him to not only focus, but become more energetic and it has slowed down his appetite) and he is now 4'10" tall. We did have to get two more prescriptions. One is for his poor allergic nose. He has the chronic nasal dripping so we are going back on the Nasonex twice a day. Dr. Jones also noted when she checked his belly that he isn't "pooing" either often enough, or just not enough when he is, because he's retaining alot. She was worried that this could become a chronic issue and turn into an impaction situation. So now he has to do a daily dose of Miralax to move "things" along. LOL Other than that, he looks great! Marriela has been doing wonderful. She is soooooooooooooooo full of energy. She wa approved for a 3 day a week summer program. This will be great for her, as she LOVES to go to school. In the fall she will go 5 days a week (half days). She has come so far. We know she has a long way to go, but it's truly amazing to see where she is now vs. where she was when she came to us. She's going to keep us on our toes, that's for sure! Tray is doing great as well. He is really trying to eat more types of food (even doing cereal each morning) and is now drinking his pediasure. He knows now that if he doesn't keep up with the eating that he will be facing the feeding tube and this has been a big incentive to try hard. I think he is going to be fine now that his kidney, heart, and GI issues seem to have come into alingment. He still gets frequent "tummy aches" but they dissipate quickly once his attention is off of the food in front of him. Then we just go back and try some more after a little break. Thus far, he is eating "half" a meal at each sitting!! This is a HUGE improvement from before!
And last but not least, Cody. He is kicking the crap out of me!! But we just saw the doctor and all is going great. His due date is still solid at 9/20 (one day before Joshua's birthday!). I am hoping to have the c-section one week early on 9/15 or so. We'll have to see if the doctor will agree. LOL
That's it for now!
Take Care and God Bless,
Renee
Friday, June 3, 2005 9:33 AM CDT
Hi there everyone!!
Well, since my last update (not quite a week ago, so this isn't tooooo late LOL), only a little has happened.
1. Tray GREW a whole INCH!!!! Granted it was the first growth he has had in over 2 years, but none the less, the grew which means we DON'T do the feeding tube just yet. We're going to give him more time to try and show us what he is capable of doing growth and food wise without intervention. I was soooo relieved for him (even though he didn't know about our plan, I was sick to my stomach thinking of having to put him through it). He didn't gain anything, but if he has verticle growth, that means he's getting enough calories. YEAH FOR TRAY!!
2. Joshua saw the immunologist yesterday. We went over his history and his lack of immunization success. It was decided (with my blessing, which is VERY unusual)that we need to try giving Joshua some of the immunizations again, and then retesting him to see if he has had any response. We will also check his response to some vaccinces he recieved back after he finished with the IVIG to see if those immunizations have held as well. This information will tell us A. if he can mount any response at all to his immunizations (we'll know this by checking the levels for the shots we gave yesterday) B. we'll know if he can maintain his ability to remain protected over time (we'll know this by checking his levels of protection to the flu shot and the pneumonia shot he got a while ago) C. we'll know if his T-cells, can create memory to the vaccines sufficient enough to actually kill off the bacteria or infection the shot was designed to kill (we'll know this by challanging his t-cells to various agents he has been exposed to and watch their response - this is differnt than just looking at his blood and seeing if his has any "antibodies" in his blood - this will actually tell us if the anitbodies know what in the heck they're doing in his body). The doctor was also pleased that Joshua was still taking the prophylactic anitibiotic and definately did NOT want it stopped (as several doctors have tried to suggest). So, yesterday, Joshua got his first Polio shot and another dT (diptheria/Tetanus) shot. The punk didn't even flinch at the dT!!! What a kid he is! LOL Didn't get it from me, I'm majorly needle-phobic!
The other 3 are doing great. Marriela has begun potty training (well, let's say we are loosly suggesting to her that the potty is a thing for her to use for something other than a depository for her toys, babywipes, rubber gloves, toothbrushes, etc.). Please pray for us! LOL Nettie had her weekly infusion yesterday and her g-tube changed. All went well and no problems to report. And Cody is far to active for my bladder!! LOL He is going to be a live one at the rate he is going now.
Well, that's it. I'll update more later.
With love,
Renee
Thursday, May 26, 2005 6:17 PM CDT
Hi everyone!!
Ok, time for an update. Trying harder to be better about getting to the updates in a more timely manner LOL.
Let's see, where (or) who do I begin.
Let's go with Trayvon: He's still doing well. We are very pleased that he has not needed any more intervention in the way of medications to keep his little heart happy. Hopefully, this will be a whole new era for Tray and we can worry a bit less since we now think that his heart may be doing better than we thought since it's doing so well without all of the extra meds on board. On the down side, he continues to struggle with his eating. He tries hard to eat more (and more types of foods as well) but his weight is stuck right at 44 lbs and he hasn't grown at all. We go next Tuesday to be weighed and measured at the pediatrician. If in fact he has had not growth, we will go to GI and have an NG tube placed at an overnight stay in the hospital and start nightly tube feedings. It was originally presented to us that maybe we go straight to a g-tube (like Nettie has, it goes directly into the stomach rather than through the nose and down to the tummy). But our problem with that is, we honestly don't know if giving him more calories, will or will not, in fact, spur on his growth. The only way to know is to add the calories and I don't think it's fair to go to surgery if we don't know in the long run it will really help or not. I do know that he will not be happy at all with the tube in his nose. It will be a very difficult thing for the family as well to adjust to, as he has always "looked" so healthy and this is something that will make him "look sick". But we have been preping his school and the family for this possibility and hopefully everyone, most of all Tray, will adapt quickly. Other than that though he is doing very well.
Ok, onto Joshua. Nothing new really. I am trying to find out what lab work the Immunologist wants to run so that I can get it all done at the same time as I have his levels for his seizure meds drawn. He is having more and more breakthough seizures and I can't wait much longer for the levels to be done, but also didn't want to have him stuck mulitple times in the same week. I just finished shaving his and Trayvon's heads (Joshua only goes down to a #4, but I take Tray's ALL the way down so it looks more like a shadow on his head LOL). We don't normally go so short with Joshua's as it accentuates his large scar so much. But I was tired of waking up to some very, very serious bedhead and a very resistant child who didn't want ANY help in taming his hair. No taming needed now. LOL
Alright, Annette. Still doing well. She went to the last school dance of the year today (they do them right after school instead of at night). She didn't want to go at first, but called from the school asking me to fax a permission slip because she realized she DID want to go after all. Typical teenager! She gets her weekly infusion tomorrow since there is no school. Other than that, she is doing GREAT!
Then there's Marriela. My little brown antichrist! LOL Just kidding!!! Honestly!! She's cute as a button, but knows how to try the patience of Job. She finished her steriods and they definately did the trick. She is much, much better and we are trying to go back to "no nebulizers" vs. maitenence nebs. I don't know if I will be successful or not, but we going for it. We also got back the results of her developmental testing. I knew she had some deficits, but they are more pronounced that we had thought. Or at least she didn't do so good on the testing. The psychologist got a 51IQ for her, but Peter and I (as well as her classroom teacher) all know that this is WAY below her real IQ. What was evident on ALL of the tests (OT, PT, Speech, Psychological, Social) was that she had NO attention span! LOLOLOLOLOL I could have saved them the trouble and let them know that well before testing commenced. We are going to talk to the pediatrician to see if she can start a low dose of an ADD med. Hopefully, if she could sit and focus longer and have a higher frustration tolerance, then she could absorb more information and make bigger developmental gains. She was severely crack addicted at birth, as well as a severe Preemie, as well as had a brain bleed, and has mild CP indicating at least some level of brain injury. All of these factors put her at very high risk of having ADHD and boy ohhhhh boy, does she ever!!! LOL
Ok, and last but not least, our little Cody. He is doing wonderful. Just had an ultrasound on Tuesday and he looked fantastic. We saw his face very clearly and it was just awesome. In a million years I never would have thought I would see that sight in MY belly ever again. What a blessing he is. We counted toes and fingers this time, checked his heart for all it's pieces and I had her look at poor Cody's head forever to make sure she didn't see anything out of the ordinary. His brain looks fine, no tumors seen... It's so hard sometimes to have kids with so many different problems. I know how many things CAN go wrong and I won't rest easy until he's here, safe and sound. On the other hand, I've also had to accept the fact that we never know the future and that I can't control what happens within their bodies. So we just check everything out and smile with each new positive report. :-)
Well, that's it for now. I'll let you all know how the appointment with the peditrician goes for Tray and how the Immunology appointment goes for Joshua at the next update!
With love,
Renee
Tuesday, May 17, 2005 6:18 PM CDT
Hi everyone!
I am sorry about being so bad with the updates. Things remain a bit crazy around here. I guess I'll just go down the list LOL.
1. Tray is doing great still. He is now over 2 weeks out of the hospital and his heart continues to do very well since his cardioversion. We did have to increase his diuretics a bit more. But his most recent labs showed everything to be NORMAL!! His kidneys have fully recovered and are handleing the new dose of Lasix fine. We are thrilled. However, the doctor did suprise us with the information that he would like Tray to postpon his Make A Wish trip until further notice (he feels he is still not "stable" enough for traveling). We broke it to Tray and thus far is handeling it well. He is now in full swing of Little League. Here's a little Tray funny. . . Tray is playing in the "coach pitch" league. This means that the coach pitches the ball to the players, but if they don't hit it by the fifth pitch, they bring in the tee for the batter to use. Well, Tray thought his coach's name was "Coach Pitch". He thanked Coach Pitch for the juice after the last game. Isn't that a riot. We did have to correct him and he didn't like the Coach's real name as much as Pitch, but reluctantly has agreed to use Coach Davis. LOLOLOL
2. Marriela has developed a bit of a virus that has wreaked havoc on her lungs. She started orapred this evening and on every 4 hour nebs as well as inhaled steroids to try and break the cycle of wheezing. She is also running high fevers so hopefully this virus will run it's course quickly. I'm not used to my spunky little whirlwind being so blah.
3. Nettie continues to do very well. I had her IEP conference today and everyone had great things to say about her and I was proud as punch to be there!! She has decided to go onto 8th grade but has requested to stay an extra year in 8th grade before moving onto the high school. She is doing wonderful with her weekly infusions. This week we endevour to get her hair braided. I haven't had to stand and do it since I became pregnant so it should be interesting to see how long this will take me!
4. And last but not least, Joshua. The pediatrician spoke with ID regarding his latest test results showing that he has NO protection even though he received all of his immunizations. So the Immunology doctor now wants to see him back again. I think they are as stumped as anyone once they saw his labs. However, Praise God, Joshua has been very healthy the past 2 years. That's not to say it has been an easy 2 years since his seizures have really been the primary concern in that time. But his overall health has, in fact been very good on the every other day Zithromax that the pulmonologist started him on. It was the best move any doctor has made (with the exception of starting his IVIG in the first place). So I don't plan on letting them "do" anything to him at this time, except maybe draw some labs if they want to. However, since his health is stable at this time, then I am not messing with it. But we DO need to know if his immune system is really as bad as it appears to be. That way if he does develop a problem we will be able to address it properly rather than flying by the seat of our pants like we always seem to be doing.
Joshua is also doing great in baseball. He is playing A-Ball and a machine pitches the ball to the batters. He has really improved with daddy's practices in the backyard! So much so the coach wanted to know what we were doing to have such an incredible improvement!! Way to go Joshua!
5. Cody Brian is doing very well. I am very large (at least I feel I am) for 4.5 months. However, my doctor says everything is fine! That's easy for him to say, he isn't the one struggling to find clothes every day to fit over my giant waist! I was very sick last night and I think that I am once again dairy intolerate. It is funny how I was in the beginning and then was fine and now dairy is killing me again. I have been having awful "gas" pain in my lower abdomen that keeps me curled up in a tight little ball for most of the night. Starting tomorrow, I will remove all dairy and see if it improves. Cody is very, very active and is constantly in a flurry of movement. You can now see his movements through the skin if I lay quietly on my back.
Well, that's it in a nut shell. I will try harder to keep up with the updates!!
Take Care,
Renee
Friday, May 6, 2005 3:03 PM CDT
WOW!!! What a little journey Tray has taken us on! LOL What we thought was a "relatively" simple problem of a fast heart beat, and needing to just add a medicine or two to fix it. . . turned out to be a whole lot more! We are finally home from the hospital and he is now feeling a lot better.
Upon arrival at the hospital, the cardiologist had him admitted to the "step-down" unit of the ICU so that his heart rate could be monitored continuously by the nursing staff. After getting him all hooked up, the cardiologist looked harder and harder at the monitor. He then came over and announced that he thought he knew what the problem was (mind you, I ALREADY thought we knew what the problem was). He then explained that even though Tray's heart rate was very fast intermittently on the holtor monitor, the monitor only picks up the rate of the ventricles (the bottom half of his heart). He was suspicious that Trayvon's atrium (the top half of his heart) was beating at double the rate of the ventricles. This is called atrial tachycardia at 2:1 time. They did a drug challange where they injected a drug in his IV that caused the top half of his heart to slow way down to almost stopping and that would then show the problem on EKG. The test was positive so the next morning he was taken to the OR and put to sleep where they then proceeded to "cardiovert" him back into a normal rate and pattern. To Cardiovert a person you put large patches on their chest and back and then "shock" them breifly. It worked like a charm and he was all done in less than 5 minutes. His rythm has remained normal and stable since. We don't know what happened to cause the problem in the first place, but as a precaution we have taken him off all of his meds except one diurectic to help him get fluid off. We are now just taking a more conservative approach to adding medicines. His kidneys are now almost back to normal and his Digoxin level continues to fall so soon he will have none left in his system. We don't know if the Digoxin helped cause all of the problems or if it was helping, but until it is ALL out of his system, we won't know if it was hurting or helping him or doing nothing at all.
In other news, Make A Wish called and let us know that Tray couldn't go on his cruise because I was more than 24 weeks pregnant at the time of the cruise. We were so disappointed. But they called back today and said that Disney could accomodate us on an earlier cruise if we could do it. So I am madly scrambling to get our certified copies of our birth certificates!
Everyone else is doing well!!
Happy Mother's Day to all you moms out there! There is no harder, more challenging, more stressful, more worthwhile job in the whole world!!! God Bless you all.
Renee
Monday, May 2, 2005 8:51 PM CDT
Hi everyone!
Well, as of tomorrow, Tray will be back in the hospital again. Actually, he should be there now, but we felt it was to traumatic to go back in via the ER so the doctor agreed to admit him directly tomorrow.
For a quick recap. . . after leaving the hospital one week ago tomorrow, Tray began complaining of his "heart beating to fast" and he was very out of breath. The doctors determined that he did indeed need to be back on his Digoxin (that was the drug that he developed toxicity to, due to poor kidney function). He wore a holtor monitor on Wednesday thru Thursday and the results were very clear that, though not life threatening, he was having many episodes of very high heart rates. So we restarted the Digoxin over the weekend. He didn't seem all that much better to me and was still complaining quite abit about his fast heart so I called the doctor back on Sunday to report our findings. He stated that he wanted to see Tray today. Well, Tray woke up and looked "off" and he began vomiting again (a sign of Digoxin toxicity). So off to the doctors we go, get some labs drawn and back home where he slept for over 5 hours (not a good sign). The doctor called and said the lab results showed his kidneys were failing again, and his Digoxin level was in the toxic range again. So we are now in a situation where we have to take away ALL of his cardiac meds and add them back very slowly to see which ones are the most offensive to his kidneys and we are starting a new one that should help regulate his heart rate. Tonight we stopped the Digoxin and one of his diuretics, and we cut another diuretic in half. This may not be good for his heart, but it will help his kidneys a lot. So tomorrow we are going back in to be monitored more closely and to get fluids to help flush out the Digoxin and bring his kidney numbers back down again. Hopefully it will only be a day or two this time since we are being proactive instead of having to react to a crisis like last time. All in all he is handling this all quite well, but is very tired of being poked and feeling like crap.
The rest of the gang is doing great. Joshua has his first concert tomorrow nite, so we made arrangements for a babysitter to sit with Trayvon at the hospital while I go to the concert! I am so excited to see my "little" boy up there on stage! LOL
Nettie and Marriela are doing great.
The baby is doing well. I did have to go into the hospital for a quick monitor check because I was having a lot of "pressure" in my uterus area and we needed to rule out contractions. They still don't know, but I am taking it easier to see if that helps and so far it has. But all in in all, things are moving right along. Week 20 now!
Take Care and God Bless,
Renee
Sunday, April 24, 2005 2:12 PM CDT
************NEW UPDATE****************
Thursday, April 28, 8:57pm
Hi everyone,
Well, Trayvon was released from the hospital on Tuesday afternoon. However, right before discharge he made an off handed comment about how fast his heart was beating. I did ask the doctor at the nurses station to listen, but by the time he had come back to the room, Tray was feeling fine again. So we went ahead with the discharge. That night he started to complain again that his heart was "beating to fast" and that he "couldn't stop breathing fast". When I listened to his heart, it sounded very off to me again. So I called the cardiologist the next day and he ordered a 24 holtor monitor (a kind of ongoing EKG monitor that you wear at home for 24 hours). Well, the doctor called only 2.5 hours after dropping off the monitor to be read and said that Tray was throwing a few extra beats here and there and that he was having "periods of rapid heart rates". He told me not to worry, that it wasn't an emergency, BUT I can't send Tray to school and I need to keep him calm until his regular cardiologist calls to tell me what he wants to do. It may be that they will want to re-admit him to monitor him closer and then maybe add the Digoxin back on to his meds. Sigh. . . so again, we are in the famous "wait and see" mode, the mode I hate the most. I am an action kindda person. I like to identify the problem and then fix it. But, the doctors are never really on the same page as I am. LOL So I'll update when we have more information. Maybe from the hospital, maybe here from home.
Tomorrow both boys have lab work to be drawn. Joshua is having all of his seizure med levels checked to see which ones have room to move up on since he is still having seizures despite the 3 med combination. Tray is having his kidney numbers and Digoxin level checked to be sure everything is still moving in the right direction.
Well, that's it for now!
Take Care and God Bless,
Renee
Hi everyone,
Writing to you from University Hospital. Tray has been here since Friday night and we'll be here through at least tomorrow. Peter and I decided Friday night that enough was enough. He wasn't keeping any food down, he was very lethargic all day and I detected a heart arrythmia while listening to his chest (he was complaining of shortness of breath so I thought maybe he was starting with some chest congestion). After talking with the doctors and them deciding that we will just restart one of his meds, Reglan, again and watch him through the weekend. I knew that more had to be done. So I brought him into the ER where they admitted him based on some wacky bloodwork. After confering with the pediatrician on call, she decided we need to see a nephrologist (a kidney specialist) while we were inpatient. She also started him on some special IV fluids to try and get his numbers back into balance. The nephrologist came to see us today and he determined that many of Trayvon's underlining issues are probably due to long term chronic kidney disease. Thus the reason he is not growing, his vomiting, his fatigue, etc, etc. are all related to how poorly his kidneys are working. Soooo, today they started a 24 hour urine collection to see how much of the toxin Creatinin is in his urine, then tomorrow, he will have a kidney ultra sound as well as some x-rays. He has also had daily bloodwork to monitor his kidney and cardiac status (where it was discovered that his digoxin level has been way to high!) and making daily med changes to go with the lab work. He is looking fantastic now (amazing how different today is from yesterday!). We are also doing a calorie count. This is going to help decide if he needs to have supplemental nutrition through a feeding tube (he will HATE that if it has to go that direction!). So all in all, I am pleased that I brought him into the ER. It is so hard sometimes to know if your child reeeeaaaaallllllyyyyy needs to go or if you are just reading more into a situation than is really there. I mean, a big cut, a major fall, serious illness, etc, are all easy to decide. But just that "feeling" that something is wrong and taking the "wait and see" approach may be detremental is more difficult to decide upon. But in the end, mommmy and daddy instinct prevailed and now we are finally on the right track for my baby.
The rest of the family is doing well... well, I should mention that Peter has been home alone with Marriela now for almost 3 full days and I do believe his sanity is nearly completely gone at this time. They should be arriving momentarily for me to see my baby and to do her hair (since that is DEFINATELY not a daddy thing). So I'll go now.
Take Care and God Bless,
Renee
Thursday, April 21, 2005 4:38 PM CDT
Hi everyone!!
Well, things have slowed down a bit here since our last update. Tray is still going for bloodwork at least once a week at this time. He was experiencing a wonderful drop in his kidney numbers but today's results have sort of stagnated thus it raises the question of what his kidneys are doing. His potassium has however, continued to decline and stay in the normal range, so that is good news. Today was a bit frustrating because he kept vomitting everything he ate. As the day went on though, he seemed to get better and ate a decent dinner and is ready to go to park right now.
Marriela is doing wonderful. Nothing new at all with her!! Joshua is also doing very well. His labs are back from the endocrinologist and, as of yet, his levels are not high enough to consider him in full puberty. We will rerun the labs in 3 months to monitor it closely. The pediatrician will be calling me with more information on what she thinks about the lack of immunizations.
Annette did her second IG infusion at home today. It went wonderful with no problems at all. I was thrilled again with the simplicity of it all!! She's looking and feeling great.
I got a call from the OB and was informed that I have something called a marginal placenta previa. Though the odds of this causing any problems is small, I have been given a list of precautions to follow until the next ultra sound in 5 weeks. I can't do any heavy lifting (over 30 lbs - which Marriela now, unfortunately, weighs), no hum-hum, and possibly no traveling. This last one may pose a huge issue for us, as Tray's Make A Wish is coming up really soon!! So please pray that the next Ultra Sound shows the previa to be all gone and everything is back in place where it belongs! Thanks. Otherwise, the baby looks fantastic. We now know that we are having a boy which we have officially named Cody Brian Curkendall. I am now 19 weeks and my new due date is 9/15 instead of 9/22. He was scratching his head, sucking his thumb and even had a full belly and bladder!! It was so amazing to watch MY baby on screen.
Well, that's it for now!
Take Care and God Bless,
Renee
Thursday, April 14, 2005 1:17 PM CDT
Hi everyone!
Sorry to leave you hanging on poor Trayvon and his kidney saga. He has been off of his med now for just shy of one week and the labs done on Monday showed a definate improvement! We just ran some more labs today to be assured that it is truly a trend and not just a temporary thing. He appears to be well, though he has begun to vomit more again (daily now instead of just two or three times a week) and is taking daily naps in school. I don't know the signifigance of either thing, just sort of watching him closely. We did hear back from Make A Wish and he has officially chosen the Disney Cruise as his wish and it looks as though the date of departure is June 2nd. He is so excited and can't wait to make a sand castle on the beach!
Joshua is doing well as is Marriela. Still waiting on word from the endocrinologist regarding Joshua's lab results. He went to Brain Tumor clinic yesterday where we learned that he has NO immunization to ANYTHING. I can't explain this, as he has recieved 2 MMR boosters and 3 Diptheria and Tetnus shots in just 4 years. I feel strongly that his underlying immune disorder is still very much present, but as long as he is currently healthy on his antibiotic prophylaxis, I am not going to stress right now.
Marriela went to Rehab today where they looked at her right leg and her thumbs. Her right leg turns in a bit and she toe walks on that side whenever she is moving fast or trying to run. We have to watch her hip as she grows older to be sure that it stays in the socket nice and tight. In addition, both of Marriela's thumbs "dislocate" whenever she uses them. So we are going to try a technique called "taping" to see if we can stabilize her thumbs and make them more productive. It's hard for her to use a spoon, because she can't get a good grasp on it because her thumb joint is in the middle of her palm (sounds grosser than it really looks LOL). If the taping works, then we will make small, soft splints for her to wear for a while, so her joints have time to "harden" up and stay in place. Otherwise, she is doing very, very well.
Other big news. . . Nettie did her first new IVIG and it went GREAT!!! We are now going to be doing all of her treatments weekly at home using this new Sub-Cutaneous method. It involves sticking 2 very, small, thin needles (the same kind diabetics use) in her belly and taping them in place. Then she is hooked to a very small pump that slowly pushes the medicine through the tubing into her belly over 3 hours. She really liked the whole process and already wants to try putting one of the needles in herself next Thursday!! I am thrilled this is finally coming to fruition after all the clinic put me through.
As for the new baby and the pregnancy, all is well. I am now 17 weeks and tomorrow I will have an ultrasound (hoping that we will be able to find out the sex of the baby!). The morning sickness is at an all time low and the nauseau is completely tolerable now. I actually feel human again. I have definately "POPPED" out and many people keep suggesting that there are twins in there. Curse those people!!!!!! Don't they know that 5 will more than enough to try my sanity. . . 6 would surely send me over the edge LOL!!!
Well, that's it for now!
Take Care and God Bless,
Renee
Thursday, April 7, 2005 11:31 AM CDT
***********Update*************
Hi there,
Just wanted everyone to know how things have been going with Trayvon. He is doing fine. However, his repeat blood work done yesterday continued to show even poorer kidney function and his potassium was very high again. In other words, he is in acute renal failure. However, the cardiologist and pediatrician feel very confident that the cause of the problem is one of his heart meds called Enalapril. So we have taken him off of this med and lowered another one that causes him to hold onto potassium. I am very nervous about these changes thouhgh, because he has needed the Enalapril (a drug called and ACE inhibitor) to help keep him out of congestive heart failure. Hopefully in the past year he has grown enough that his heart can handle working without it. We go back on Monday morning for more bloodwork to see if his potassium has improved and hopefully his kideny numbers will have stabilized. On the outside. . . he's doing GREAT!!! Getting ready to go to baseball practice as we speak! LOL I'll keep you posted with any new developments.
Take Care and God Bless,
Renee
Hi everyone,
Thought I would send a new update your way. Things have been a bit interesting around here. . .
First, last night we had a bit of a scare. Tray had his lab work repeated and some new ones run earlier in the day due to his new habit of eating chalk and paper. The GI doc also wanted to recheck a few things that were off on the labs they drew back in February, like his kidney function and his electrolytes. No big deal, threw a physical in for good measure! Then, at 11:30pm I get a call from our ped stating that some of Tray's labs are severely elevated and he needs to be taken to the ER ASAP!! She had already talked to the PICU team and they definately said he needed to be there NOW! It seems his potassium and one of his kidney numbers (the BUN) was way, way up.
Sooooo.... off to the ER. Were we spend 4 hours to find out the potassium was back in the normal range (high potassium can cause severe cardiac problems) and his BUN was still high, but low enough that we could go home after a bag of fluids. So, we returned home at 5:00am. He has to go back to the doctor's tomorrow for repeat labs to be sure that things are still moving in the downward direction or he will have to see a kidney specialist to assess the cause of his elevated kidney numbers (they are quite high).
This morning I also got a call that my amazing, wonderful granmother has passed away, 5 days after her 97th birthday. I will miss her tremendously. . .
Nettie was also turned down for her "second" wish through the Marty Lyons Foundation. We had hoped to get her a shopping spree to help her out of her depression and to focus less on her body, but she isn't sick enough. I understand completely though, and will share the outcome with Annette.
Joshua will see the endocrinologist tomorrow due to some new "behaviours" indicating that puberty has begun. He has also had a big growth spurt (thus the reason his seizure meds needed increasing). We'll probably start the monthly shots to stop the puberty this month. These will continue every 28 days until the age of 16 or so. Sigh.
We took Marriela to the doctors with us when Tray had his Physical and blood work. She has been running low grade temps for over 4 days now so I had the doctor look in her ears again. Sure enough another infection. She's back on another antibiotic. Me and the ENT are kicking ourselves now that we didn't do the ear tubes when she was in for her tonsils and adnoids, now it looks like another surgery for her. Sigh.
Well, on a good note my morning sickness is now just that "morning" sickness. I usually have a hard time in the morning but once my meds kick in, all gets much better and I actually function at about 75 ow, which is a HUGE improvement!!
So, that's our past few days in a nutshell.
New pictures will be up soon!
Take Care and God Bless,
Renee
GB Jeff
Thursday, March 31, 2005 8:12 AM CST
HELLLLLOOOOOO EEEEVVVVEEEERRRRYYYYYOOOOONNNNEEEE!!!
Hehehehe. I'm just feeling a little lonely having now spent the better part of 3 months in my house wretching. However, it seems there is light at the end of the tunnel and the meds are doing more and more for me as the weeks move on. I actually have been up and yesterday even did 20 minutes in the pool at the YMCA! I was sooooo tired afterwards, but it felt great. Today I feel pretty good again and have actually had a nice size breakfast that has stayed with me for more than a 1/2 hour so things are improving daily at this point. Sigh of relief. LOL
Ok, now for my whine of the day. I'm old. I'm old. I have a 15 year old daughter now!!!!!!!!! How is that possible that my sweet, little, angelic child named Annette could grow up to be my sweet, little, mostly angelic 15 year old!!! I haven't aged a bit and yet she sits before me with her big hoop earrings, her makeup, talking about boyfriends and her plans for after she turns 21, and clearly I have to acknowledge that time has passed. I am older. Annette is older, beautiful and still my amazing, life loving, Santa believing child who will one day shock the world with something she does (hopefully, it will be something good :-)}. She is having some friends join her for a movie and arcade games at our local mall this Saturday instead of a "party".
The boys are doing well. Tray still has yet to be "offered" a choice of Make a Wish trips. We are a bit confused by what is taking so long. But know that it will all work out in the end. He has also started a couple more meds to help with his belly so he can start to gain some weight. He will have some more blood work done on Wednesday because some of his kidney functions were on the high side, BUT. . he takes A LOT of diuretics for his heart so this is not uncommon. I think the GI doc forgot he takes so many other types of meds, so he was more concerned than necessary. Otherwise he is doing wonderful!!
Joshua has had an increase in his seizures again so we have started the process of increasing his meds again. Hopefully, just one increase will be all it takes to get him back on track. He continues to struggle in school tremendously even with the ADD meds. So know we are looking at going to a 1:1 aide to be with him exclusively. It's been a tough pill to swallow, but Peter and I both agree that if we are going to "push" Joshua to his maximum level, then we have to get him all of the assistance he needs. The school itself agrees, we'll just have to see if the district personnel go for it.
Marriela had her surgery last week. She did very well and is now tonsil and adnoid free. The only dillema was that she was refusing to drink and they almost made us stay an extra night, but after some begging she got in 1 ounce of root beer so they discharged us late evening. She had a long recovery and has just started acting more like herself. She has also lost 7 pounds due to her refusal to drink or eat. But the pediatrician has seen her and though the weight is concerning, she is drinking enough to stay hydrated at this time. She has gone to school this week both days so I think she's on the road to recovery.
Well, that's it for now. I'll write more soon!
Take care and God Bless,
Renee
Tuesday, March 15, 2005 1:44 PM CST
Hi everyone,
I know, I know, my God. . . Where have I been!!!???? Well, let me tell you. It seems God is not done giving us a miracle or two. I am now expecting a baby, due, of all days, on Joshua's birthday! How's that for a coincidence?? Apparently I can only get pregnant one day every 10 years! LOL However, amid the joy of our news, I have been suffering from severe morning sickness (now that's a serious misnomer!). We have been playing around with different medications to try and get the vomiting and nausea under control so that I can finally feel somewhat normal. I have just recently begun to have a few good days in which I can actually move out of the bed and function at about 10 - 20% of my norm. It's been a rough few months and I anxiously await the next phase so that we can really enjoy our newest addition.
As for the kids, all is going great. Marriela is having surgery next week to remove her tonsils and adnoids. She was scheduled for last month, but the day before surgery she spiked a high temp and developed a bad ear infection. This same scenerio repeated itself just 3 weeks later and now she is on a strong antibiotic until surgery to insure we don't have to postpon it again. Otherwise she is doing well and gaining weight nicely!
Tray has had some exciting news!!! He was approved for a Make-A-Wish trip by his cardiologist! So we are in the process of working with them to determine the best "wish" for him. He wants to go to the "beach" and see Disney. Unfortunately, to go to Disney World would exclude the beach so we are leaning more towards a Disney Cruise or a stay at the Sandels Beaches Resort. I think though that he will be THRILLED with whatever he and the wish granters decide upon. We are excited and it's one more reason for me to work on feeling better so I can be 100% for his trip.
Joshua is doing well. He is excited about the baby and is the only that acknowledges my pregnancy almost daily. He loves to hug me and then give my belly a kiss and say "hi" to the baby. Since they will be so close in birthdays I think he feels a special link. His health has been good and nothing to report.
Annette is also doing very well. She has adjusted to her new school very well, but continues to struggle with all of the normal Middle School trials and tribulations but with the added burdens of lack of comprehension and her wheelchair. She has formulated her idea of what a boyfriend is by watching the Disney Channel (Lizzy Mcquire, Boy Meets World, etc.) and doesn't understand why things aren't the same as she sees on tv. She talks all the time about "moving out", going to college, and learning to drive. Now mind you, she plans to do all of these things without our help or intervention, at least that is what she is telling us right now. LOL Health wise however, she continues to do very well.
Well, that's it for now. I will try to get up and to another update in a much more resonable time frame.
Renee.
PS. Just thought I'd let you know that on March 4th, we have made it 7 years since Joshua's diagnosis of cancer!! 7 years!!!!! Hope it makes you smile as much as it does us. He had his MRI last week and so far, no news is good news. LOL
Tuesday, January 4, 2005 7:55 AM CST
**************UPDATE****************
Just asking for a little help sending me some luck this way! LOL I have to go to Strong Memorial for Marriela's overnight stay for her PH probe early Monday morning. However, she has to be NPO from midnight on!!!! I don't think they understand! She HATES riding in the car without her bottle of "milk"!! I am terrified this ride is going to be one from hell. :-) My current plan is, to make Peter stay up most of the night with her and then she will be very, very tired in the car and hopefully will sleep the entire way there!! I do realize there are many potential flaws with that plan, but let me dream at least. hehehehe We got a storm today and finally have REAL snow on the ground. Of course, it comes just before my trip. . . ahhhhh ain't that the way. Tray could also use little prayer. He has had a belly ache for the past 3 days. I think it's just constipation, but it's really dragging him down. Joshua has started his Adderall and doing great so far! Nettie is THRILLED to have learned that we are transferring her out of her current middle school (way to hard for her and she is just overwhelmed by the work asked of her) and moving her to a life skills program at a different school. She was disappointed though to learn that she will be picked up almost a half hour earlier each morning!!! Her nurse isn't going to like that news either. LOL We held off on the powerchair, because her school insisted that "there is just no place to store her manual chair during the day." A school that holds almost 650 kids, and they can't find one little corner for her wheelchair!? Crazy. So instead of dealing with them, we are just going to wait for the new school.
Well, that's it. It's 11:00 and Tray and Joshua both just came to me and told me they are hungry. Hmmmm. . . they are going to be VERY BITTER tomorrow when I wake their butts up for Church at 8:00am!!!!!!
Have a great night.
Take Care and God Bless,
Renee
Good Morning everyone!!
Happy New Year to all. Peter and I had a wonderful evening planned (well, in our minds anyway, never thought to call anyone to share our ideas and make any reservations) So off we go, to a nice restaurant, only to find out that its packed unless you have a reservation. Same story for the next 7 restaurants we try. In the end we land at Ruby Tuesdays at our local mall. Then we think, “hey, what about seeing a movie?” So down we go to the theater. Only to find that we missed all of the movies by 15 minutes. Hmmmm, so now we are back in the car, wandering aimlessly. Wind up at the local video store, rent I,Robot and The Anchorman. Bring them home and scare the pants off of the nurse (our babysitter) who isn’t expecting us back for at least 3 or 4 more hours!! LOL We even beat the kids into bed!!! Oh dear are we getting old! We tried to stay awake, but at 12:02am, I rolled over saw the clock and heard Peter snoring. I smacked him, wished him a Happy New Year, 2 minutes late, and then promptly feel back asleep.
Joshua saw the pulmonologist and had a GREAT report. All is stable and he doesn’t have to go back for five whole months!! We also had to take him off of the Concerta, even though we did see an improvement, but it was causing to many seizures. I was having to increase his meds with each dosage increase of the Concerta. So now we are going to try Adderall and see if that has less seizure control impact but good effects on the ADD. Other than that, Joshua is doing awesome!
Trayvon had his cardiology appointment. He also got a wonderful review. He didn’t even need an echocardiogram this visit! Since we now know that his stomach issues aren’t cardiac in nature we can go another 6 months until we see that doctor again. LOL As for his stomach, his pediatrician is working on getting us a referral out to Strong Memorial to see the same doctor Marriela sees for GI. She is also having surgery review ALL of the recent tests to make sure that there is nothing that surgically has to be managed. Outside of that, we are at a loss for what is causing this and how to fix it. But, overall, he is doing great. His school called yesterday and let me know that he is being dropped from PT, his OT is going down to once a week and he doesn’t qualify for summer school anymore! That means, academically, he is in the “average” range! What an amazing kid.
Annette is doing very well also. She did get her new bed and her power wheelchair comes on Thursday. She LOVES her new bed and she hasn’t complained of back pain in over 3 days. How wonderful is that!! I am however a little worried about her being depressed. She has really taken a liking to just sitting in a dark room, in bed under the covers listening to her music with headphones. She rarely comes out except to eat and when we “make” her, or for school. She’s meeting with someone at the hospital to talk to them to see if they can help pull out of her what is bothering her. She has expressed lately though, that she is sad about her old friends. They look at her “funny” and don’t want to talk to her anymore. These are the same girls that have been looking Nettie up on the internet. I really hope if you are reading this, you see how much your actions effect another person. Annette doesn’t understand why anyone would be “mad” at her or why they “look at her like she is strange or something.” She still sees them as the same girls she has been friends with since 5th grade.
Marriela is doing much better since Christmas morning. She is down to only one day left of her steroids, but she is already junkier since reducing them. I think the verdict is in, her lungs need the steroids for a little bit longer this winter. She will be inpatient next Monday and Tuesday for her PH probe and her gastric emptying scan. However, her weight is wonderful!! 26.6 pounds at her last visit with Dr. Jones a few days after Christmas. She had school today and went off happily, despite the fact that she didn’t sleep for about 4 hours last night and decided instead to cry incessantly. When I asked her what was wrong she said “Sworry mommy.” and then kept on crying. I think the steroids make her uncomfortable, but I just don’t know.
Other than that however, nothing new is happening here! Hope all is going well. Our prayers and thoughts go out to those affected by the awful Tsunamis and the workers trying desperately to help amid such destruction.
Take Care and God Bless,
Renee
Monday, December 27, 2004 4:42 PM CST
Hi Everyone!!
We hope this finds you all home, safe and sound. Our prayers are with all of those who have had to face these Holidays with someone missing at their table. May God grant you peace and comfort.
We had a very nice Christmas. The kids actually “slept in” this year (7:00 am). We spent the day with my mom and sister and in the evening, my dad came by. The kids all seemed very happy with their gifts. However, Peter and I are now under the gun on how to get Nettie’s MP3 player started! LOL Marriela had NO INTEREST at all in opening her gifts. Santa had left a doll stroller for her and that was all she needed to see. She spent the better part of 2 hours pushing her stroller around ignoring the rest of us as we opened our gifts.
In the afternoon, while taking a nap, Marriela decided that Christmas just wasn’t very exciting so she’d spice it up a bit with a nice sized asthma attack. After vomiting and coughing her pretty little head off, the nebulizer treatments finally kicked in and she settled down. However, early evening the coughing started again and not long after she was really having trouble. The on call doctor did agree to call in some steroids for her but I didn’t dare leave her while I went to go get them. After observing her for a few moments, Peter and I both agreed she was not doing well and it was time for the ER. So off we went, with Barney in the portable DVD player (God Bless the soul that invented that device!). But as the proverbial toothache gets better at the dentist, so does the proverbial asthma attack. The did put us in isolation, which is always a nice treat so you can’t leave to even get a snack, and everyone that comes in is up to their eyeballs in yellow. Then they gave her a “loading” dose of steroids, which resulted in an utterly monstrous night of sleep last night! LOL And then sent us on our way. She did have another bad bout yesterday morning, and coughed severely throughout the day requiring A LOT of extra neb treatments, but today (day 3 of steroids) she is doing much better.
Joshua, Trayvon, and Nettie are doing very well. They seem very content with what Santa bought (they ought to be !! LOL).
Again, Happy Holiday’s and God Bless,
Renee
Saturday, December 18, 2004 10:43 AM CST
Hello Everyone!!!!
Merry Christmas, Happy Chanukah, Happy Kwanzaa and whatever other holiday’s you may be celebrating this time of the year.
We are doing well. It is for sure now, we will have a white Christmas. Of course, the snow had to fall on the day that I had to take 3 different children to three different doctors’ offices. But at least it will be white. However, with the white came the cold and that has been a bit of a shocker for poor Marriela! I’ve been keeping a medical mask along with her scarf wrapped tightly around her face trying to keep the cold air out of her little lungs. I works to some extent, but boy can you tell when she pulls the mask down before we are in a heated environment! She starts cough and hacking which then scares her and triggers another round. Thankfully, once her lungs warm up she recovers and turns back into the tazmanian Devil on Espresso. LOL
Trayvon had his CT and my concerns about him drinking the contrast were completely unfounded. He in fact LIKED the blessed stuff and drank in less than 5 minutes. He stayed perfectly still for the scan and other than the long hour we had to wait between the time he drank the contrast and the time he was scanned, he was in and out with no dilemmas. The pedicatrician called me and told me that they found a malrotation of his intestines. WELLLLL, we already know this. He has had a malrotation since he was born and had a surgery to fix it. The surgery “tacks” the loop right to the intestinal wall. This way it can’t tighten and become constricted. I shared all of this on his medical history form. I also told them that his internal organs are reversed. In other words, his stomach is on the right (instead of the left like most people) and his liver is sort of in the middle instead of on the right, plus he has no spleen. They STILL read the dang thing wrong and the radiologist asked the tech to be sure the films were labeled properly! Very frustrating. In the end, there does not seem to be any bowel edema, which, is what we all thought was causing his frequent vomiting and lack of weight gain. Sooooo, now he is off to have an upper GI next Wednesday. This I KNOW is not going to be fun. I have already been through this once before with him and it took 5 of us to hold him down (I should note here, that he was also wrapped like a mummy in a sheet and still needed 5 people!) and one to force feed him the barium! Although, at the half way point of the test, Tray looked up at me, with my sweating glistening on my forehead, my voice hoarse with singing songs to him and my arms shaking from holding him so tight. . . And stated that the white medicine tasted good. After that, we all let go, unwrapped him and he laid there drinking that stupid stuff like it was kool-aid. I took pictures to show him should he ever need the test again. Guess I’ll be pulling those pictures out! LOL
Joshua and Nettie are spending the entire weekend at a new Respite Home for children with Developmental Disabilities. It’s called Casey’s Place and I have been active in the group, Familycapped, that has built this amazing house. It is so weird to walk into such an accomplishment and know that you have literally witnessed the process from the ground up. My good friend Diane Nappa had a dream of building a home where kids with developmental disabilities and severe medical problems could go, so families could have a break and the kids could experience a “night or two away from home”. Joshua and Nettie are 2 of the very first 6 kids ever to stay there. This is the first weekend it was open. I was both honored and saddened that they were going. Honored that Diane thought of my kids right away and asked if we wanted to have them stay. Saddened that I have 2 children that are qualified to use it. Though Joshua is not a “typical” visitor of the home, he is very appropriate and. . . According to my last phone call, having an absolute blast!!! The house is an amazing 10,000sq feet and has EVERY amenity you could imagine. They have all of the top of the line equipment to handle literally ANY type of child, regardless of disability or medical status. It is truly amazing to see.
Well, Marriela is, for some unknown reason, up in her room napping and coughing, and coughing. So I better go and give her a treatment.
Again,
Happy Holidays to all!!
Renee
Wednesday, December 8, 2004 6:30 PM CST
Hello everyone,
Boy, things are just moving right along here! I can’t believe the year is almost over and that Christmas is literally, just around the corner. We finished our tree tonight (actually, Peter and I finished the tree, the kids never show ANY interest in getting the tree decorated LOL). I think it looks beautiful. I also put a bunch of lights out front only to discover that most of the strands don’t work. I mean, like only 12 bulbs in the middle of one strand and 30 or so of another out of over 200 lights! Should’ve checked them prior to stringing them. But I think it is really looking Christmassy here now.
I took Tray to see the pediatrician yesterday. It was a nice visit and we talked about a variety of things. The first and foremost being his lack of caloric absorption resulting in very poor growth. It has always been my theory that Tray, for whatever reason, has a lot of bowel edema. This is definitely related to his heart, but we don’t understand why it is just his bowel that is affected. The theory is that the edema makes his bowel very small and therefore difficult for food to pass through at a normal rate, as a result it backs up into his stomach. If he eats past a certain point, viola, it’s “toss your cookies” time. This happens about 3 to 4 times a week. The problem isn’t that he’s vomiting, rather it is that when he vomits, it is literally everything that he has eaten for the day and therefore, 3 to 4 times a week, he’s not absorbing ANY calories. This is where the problem lies. Soooooo, we decided that before we do anything at all with medications or cardiac wise, we are going to scan his belly and bowel to see, if in fact, my theory (and the doctor’s as well I should add) is true. If it is, then the only real way to address the issue to increase his diuretics even more and he is already at very high doses, even for an adult!!! But, if it isn’t the case, and his bowel is fine, then what other reasons could be causing him this vomiting and how do we address it. Tomorrow we go for his CT scan. I am nervous that he won’t drink the contrast. He is already a very, very picky eater and drinker. I can’t imagine this is going to go down well. The worst case scenerio is that we have to NG tube him for the contrast. He will HATE that so I am hoping that I can use that as leverage to get the stuff down. Hummmmm, any other ideas out there from those with CT experience!?
We also discussed Marriela and the fact that we don’t know why we can’t get a handle on her asthma, lung disease, bronchopulmonary dysphasia, or whatever they are calling it at this time. Each doctor has his or her own term for what she is experiencing. We have hit the proverbial wall with her inhaled medications as well as daily “maintainance” meds. The next step is oral steroids and with the possibility that she is having a lot of reflux, steroids will only make that worse. So we agreed that she should go through with the admission in the next week or so for the PH probe and the gastric emptying scan (though, personally, I think the scan will be normal). She is eating more variety of foods and really showing an increased interest in food. She will now actually “ask” for food vs. me having to force her to sit in the highchair and eat at my command. This makes for a much more pleasant meal, I assure you! LOL So I guess we will just have to wait and see what the new tests bring.
Joshua is increasing his seizure meds again. Actually, I am increasing them, he’s just swallowing the dang things. LOL The pediatrician, Dr. Jones, agrees with me that we can try increasing his ADD meds, but the neurologist is against it. He wants to have full seizure control before doing any increasing. However, I think that if there is going to be any increase in seizures due to the Concerta, we should just address it as we would any other increase in activity. Why wait until we have good control and then increase the ADD meds. So, if they do cause an increase in seizures, are we saying that we won’t leave him on them? I contend that the ADD is just as debilitating as the seizures themselves and therefore have to be treated concurrently. I make one heck of an argument for myself, too bad it didn’t work on the neurologist. LOL
Nettie is doing well. We have just ordered her a “hospital” bed. Noooooo, she is not sick. However, her weight distribution (lots on top and NONE on the bottom) makes it virtually impossible for her to turn at night. We have discovered recently that Annette is in the exact same position in the morning as she was when she went to bed the night before. Can you imagine not changing positions at all during the night!?? As a result she is experiencing A LOT of back pain and asking for motrin several times daily now. So we have decided it was time to order her an adjustable bed with the side rails. This way she can sit herself up without someone's assistance as well as use the side rails to roll herself over and adjust her self throughtout the night. She is both sad and excited with the news we ordered it. She is sad that she will have to have a bed that means she is “disabled” but excited that maybe her back won’t hurt so much anymore once she gets it. We also learned that her power wheelchair should be here soon, and that is also being received with VERY mixed feelings. She thinks it will make her look much more disabled and therefore everyone is going to stare at her. I assured her that if they stare, it’s because they want one too!!
Ok, this was a long one and Joshua is itching to get on the computer. So I will bid farewell for now.
Take Care and God Bless,
Renee
Wednesday, December 1, 2004 1:05 PM CST
Hi there!!
Just getting back from our trip to Rochester with Marriela. We saw GI. They were very impressed with her weight gain of 21/2 pounds!! However, she didn't grow a smidgen upwards. So she is still having trouble getting the calories to do everything they are suppose to. Hopefully we will wow them next visit with a much taller Marriela! LOL
They did however, want to admit her in the next couple of weeks for a gastric emptying study and a PH probe. Normally a PH probe is done outpatient with no problem (we have done many with the other kids), but with her asthma being so uncontrolled at this time, they feel it is to unsafe to have her do it as an outpatient. So we will hang at the hosptial for 24 hours or so and then be on our way. We also a bit more blood drawn today to make sure one of her liver enzymes that has been very high in the past, has continued it's downward trend. Other than that, all is well.
Spoke to Trayvon's cardiologist regarding his weight (Tray's not the doctor's heheheh), his headaches he gets whenever running around and his vomitting. He agreed with virtually everything I had thoguht was the cause of each problem. The only one that suprised me was the headaches. This is another sign of increased venous hypertension and the headaches are a direct result of this. There is nothing that can be done and Advil won't even help, since it won't reduce the blood flow to his head. So we have to "teach" Trayvon to monitor himself and to "time himself out" when he starts to feel any sypmtoms of a headache. We see the doctor for a full workup at the end of the month.
Joshua continues to do well. I have noticed an increase in absence seizures again, so I have a call into the neurologist to see what they want me to do. He had his Dexa scan of his arm done yesterday along with vial after vial of blood work. This weekend we have to do a 24 hour urine collection. Sounds like a blast to me! I know Joshua will think this is just the coolest idea, Peeing in a large bucket! To each his own I guess.
Annette is doing well also. We did have to stop one medicaiton because she had gained 6 pounds in just 3 weeks due to it. So now we are working with the doctors to find another method of addressing her issues. She is SOOOOO worried about her appearance and has begun working out in her room daily and regularly announces that she is on a "diet". We are working with her to find a happy middle ground that she can be happy with, but not make her obsessed about her weight. But hey, she's a teenager and she is going to obsess despite my efforts! LOL
Other than that, all is hunky dory, gotta go change a very stinky diaper right NOW!!
Take Care and God Bless,
Renee
Saturday, November 27, 2004 8:59 PM CST
Happy Belated Thanksgiving. . . I truly hope that all were comforted and fed well, regardless of life’s situations. Those celebrating the Holiday’s with an empty chair at the table, are so very much in our hearts and prayers. I can not imagine the pain, but will pray for comfort and strength.
We had a very nice Thanksgiving at my sister’s house. I am not use to not cooking (though I did do a Turkey, some candied yams and a cranberry orange bread). It was hard to just sit back and relax, but Peter made sure I at least “tried”. LOL
The kids are doing well. Marriela and I saw her Pulmonologist. He started her on yet another medication to try and trick those lungs of hers into working! This is a very powerful dose of bronchodialator. She takes the weaker version during “crisis” times, but this one is only for once a day with her normal afternoon nebulizer treatment. If this fails, OR she gets sick, we will have to do oral steroids for an extended period of time. We are also going to have an echocardiogram done again just to rule out the chance of Pulmonary Hypertension. This is when the lungs are having difficulty expelling the excess blood from the lungs due to poor heart function. We definitely don’t think that this is the case, but if we don’t rule it out, then we risk making her very, very sick with the current treatment plan. We are going to Strong Memorial Hospital for her GI visit. Both the ENT and the Pulmonologist want a PH probe done so I am sure we will schedule that on Wed. as well. Yuck. Tray has had two, Nettie 2 and Joshua one. But it doesn’t get ANY easier!
Nettie saw her cardiologist for her dizzy spells and “fast” heartbeat. She is now on a long term cardiac monitor for the next month. We call the company if she has any symptoms and play back a recording right over the phone of her heart rate. Isn’t that so cool!? It’s been a bit trickier though than we thought to keep the stickies where they are suppose to be.
Joshua is doing well and we go for his bloodwork on Monday. I “forgot” to take him for his dexas scan. Yes, I do occasionally just forget a doctor’s appointment once in a while. Sometimes there are just SOOOOOO many to fit in, that I miss one. So we will reschedule that on Monday as well. J Other than that, he is doing well. We are looking to increase his Concerta because I think it helps a little, but he really needs more to have a real positive effect. We will also talk to the neurologist on Monday as well regarding this.
Tray is doing very well. It is so weird to look at your child and physically see signs of aging. By that I mean, his teeth are coming in. He has always had a HUGE smile with lots of gum so you could see all of his baby teeth looking back at you. Now that he has lost most of his front baby teeth, there are these large, “big kid” teeth looking back at me! It definitely takes him from baby to boy. They grow up way to fast. L
Thank you Lord for all that you have given our family, for all that you have taught our family and for all blessings you give our family. It is both and honor and a blessing the be the parents of my 4 children as well as the wife of my loving husband. Thank you for showing them into my life and for the strength to protect them in all of their life’s challenges. Please continue to watch over us as we face each day with your love and guidance.
Amen
Take Care and God Bless,
Renee
Note from previous entry:
I really didn’t know how to add this, so I am just going to say it. Recently some of Annette’s classmates have stumbled upon this site. I don’t know why or how, but they are very interested “looking” her up on the internet. This site has been as much for me, as a diary or journal of sorts to document my amazing children. It has also been a wonderful way to share and find support out in the cyber community.
I ask that if you know Annette, if you care at all about her, you will treat her with kindness, and respect. Just as you, yourself would want to be treated. Annette has always been a model student, friend and daughter. What she has dealt with medically is beyond her comprehension as well as her control. She has beat many odds, and cruel, uneducated words or actions would be devastating to her.
Monday, November 22, 2004 7:17 PM CST
Hi everyone,
I greet you now as the official mother of 4 Curkendall Children!!! Marriela’s adoption was finalized at a wonderful event, by a wonderful judge in Boston, MA on Friday. It was bittersweet though, as she was unable to go with me. Peter and she stayed home due to the fear of exposing her to the flu, RSV or God knows what else on the airplane or surrounded by all the children at the courthouse. I flew down on the 6:20 flight and returned on the 8:05 flight. Long but beautiful day. Boston was sunny, warm and the people were remarkably kind and helpful. I have lots of pictures to share with Marriela when she is ready.
Onto other news. Joshua saw his new endocrinologist. I LOVED him. He was through, competent, knowledgeable and I didn’t have to teach HIM all bout my child’s various conditions. He actually seemed to know what everything was and how they impacted upon each other. The great news was that he definitely felt that Joshua was no longer in need of any treatment for Precocious Puberty. He stated that the evidence pointed to adrenal maturation (mild body odor, starting with some acne, etc.) but nothing points to an increase in his testosterone and that is the only aspect we could treat. So, one less BIG thing to worry about. YEAH!! He did want more information on Joshua’s growth, as he may still not be out to of the woods for Growth Hormone, but the doctor won’t know until he reviews all of his past growth charts and lab work. I also have oodles of blood work to be done as well as a new scan of Joshua’s right wrist bone. They have a lot more data from DEXA scans on kids arms than they do on hips and backs (which is where most DEXA scans are run, because they are designed for older populations). But the doctor now thinks that Joshua may not have a very bad case of osteporosis at all. But this scan will tell us.
Marriela had some more bloodwork done today as requested by the GI docs. She sees them next week. I spoke to the pediatrician again about how much different Marriela’s breathing has been since her pneumonia. She still needs A LOT of nebulizer treatments, takes 6 meds just for her lungs and yet she still wheezes daily, is short of breath and breaths very quickly. It used to be, that she would only do any of the before, when she was sick. Now, she does it all the time. She sees the pulmonologist on Wednesday so hopefully he can shed some light on her new patterns. The pediatrician, Dr. Jones, is going to look for another opinion to see if there is something we are missing. However, on a great note. . . . Drum rollllllllllll please, her new weight, as of 4:15 this afternoon. . . 25 pounds!!!!!!!!!!!!!! That’s 3 pounds in just 2 months!!! That is more than she gained in the entire previous 9 months! YEAH Marriela!! Once she gets to 28 pounds or so, I’ll start slowing down the number of bottles she gets (this is how we get the high calorie formula and calorie packed powder into her) and start switching her over to much more solid food. It’s just harder to add calories to solids so we will stick with what is working right now.
Tray has graced the tooth fairy with yet another tooth. Today at school, he lost his left front tooth. THANK GOODNESS! I didn’t know how I was going to choke down my Thanksgiving dinner watching that dang tooth waggle in and out of his mouth another moment. But, Tray is not one to rush ANYTHING in life!!! So, in true to character, his teeth also take their own sweet time coming free. But it did and now he has a ½ a front tooth to work with (his other front tooth is about ½ in now) at dinner on Thursday. I think he will be fine. He did make his formal request today thought, Chinese food for Thanksgiving. I assured him, we would have SOMETHING he would like amongst the feast. He isn’t going to go down without a fight. I heard him just a few moments ago urging Joshua to request Chinese food for dinner as well. Joshua didn’t budge. HE likes his turkey! J Despite Trays love of “some” foods, he has not grown well in the past year at all. His weight is the same and his height gain is less than impressive. We are working with the doctors to determine if putting him back on the Pediasure is an option. We have to justify it though to the insurance co. but, he’s had it before due to his heart, so I think all will be fine. Hopefully, just a can or two a day will be more than adequate to plump him up.
Annette, she is doing awesome. Right now she is VERY focused on “losing weight”. She is ASKING to go out for walks to “burn calories” and wants to start going to the gym every night. I told her we should start a bit slower and work our way up. She has been short of breath coming up the stairs each night and has had several episodes of dizziness. So tomorrow she sees the cardiologist just to be sure she’s ok cardiac wise. Then on Wednesday she has IVIG.
Ok, other than that, we’re doing great.
I really didn’t know how to add this, so I am just going to say it. Recently some of Annette’s classmates have stumbled upon this site. I don’t know why or how, but they are very interested “looking” her up on the internet. This site has been as much for me, as a diary or journal of sorts to document my amazing children. It has also been a wonderful way to share and find support out in the cyber community.
I ask that if you know Annette, if you care at all about her, you will treat her with kindness, and respect. Just as you, yourself would want to be treated. Annette has always been a model student, friend and daughter. What she has dealt with medically is beyond her comprehension as well as her control. She has beat many odds, and cruel, uneducated words or actions would be devastating to her.
With that, I’ll close,
Take Care and God Bless,
Renee
Monday, November 8, 2004 7:50 PM CST
November 11, 2004
Hi everyone,
I thought I would throw up a new update here since a little has been happening. On the good news front, Joshua’s nurse practioner from endocrinology just called and said that Joshua didn’t need to come in today!! His labs are all in the normal range and his hand x-ray (bone age) was not greatly increased from his previous one. So he does NOT need growth hormone at this time, and though his Testosterone level is still elevated, it has stayed stable so we are NOT starting treatment to stop puberty! I am so glad to hear that we are not facing that at this time. It does however, leave us with the question, “why does he have severe osteoporosis?”. We see the Metabolic specialist next week so hopefully we will have some answers after that.
In other news, Marriela had a HORRIBLE night. She coughed and coughed and coughed, even with many nebulizer treatments. She is very congested and now has wheezing all over her lungs. I just don’t know what else to do for her without taking her back to the doctor and having them put her on daily oral steroids. She did see the ENT yesterday. He did a brief “scope” of her nose and vocal cords in the office (I think it goes without saying, she did NOT appreciate this little procedure). He feels that she has some nodules on her vocal cords due to her prolonged intubation as a newborn (over 2 ½ months). He also found that her tonsils are quite large and taking up a lot of space deeper down in her throat and that her adnoids occupy about 70 f the back of her nose. Therefore he is inclined to remove both her tonsils and adnoinds to help her breathing. He also will take a closer look at her vocal cords and their function with his bronchoscope. But before he does anything he wants her to have another FESS study. This is where they put the camera down her nose and look closely at her swallowing and vocal cords during eating and drinking. I hate to do this to her again, but he wants to be sure that her airway is secure before putting her under anesthesia. He also wants her to have a PH probe now to rule out presistant reflux. Poor thing always has something on her plate to deal with!
Well, that is it for now!
Take Care and God Bless,
Renee
****** I did it!!!! New pictures up on the Photo page!******
Hi everyone,
I am desperately trying to get some new pictures up and running here, but having a great deal of trouble. I can do a newsletter for over 800 people in 2 hours, but can’t resize or create a collage in less than 3 hours. Sigh.
Well, while I am waiting to see if the last set of pictures loaded, I’ll throw in an update as well.
Trayvon. Oh my little baby has turned 6 YEARS OLD!!! On Sunday, Tray celebrated his 6th birthday with a superhero/The Incredibles/villian party. He had several classmates and hoard of relatives here to celebrate with us. I’ll post pics of the party as soon as I become computer literate again. As we promised, when he turned 6, he could have a pet. We welcomed Speedy, the Betta fish into our home yesterday. He seems to have adjusted well to his new Spongebob Square Pants aquarium. Though Speedy, would be a serious misnomer for this particular fish, as he really is anything BUT speedy. He’s, relative to other Betta fish I suppose, a pretty laid back fella. Just hoping this doesn’t mean that the concept of “Fishy Heaven” is just around the corner! To make the weekend a bit more special we also saw the movie The Incredibles on Saturday. Then for the party we ordered one of Tray’s favorite foods, the Happy Meal. Then, as if that wasn’t enough to please our young man, we went on and ordered him Chinese food for dinner. Tray was ecstatic the whole day!!! We are just so proud of how far he has come and how well he is doing after all of his difficulties. Prayer does work!
Let’s see. Joshua has chipped his front tooth. Apparently it didn’t hurt, because he has no idea why we are asking him if it hurts, or what he did to his tooth. So now we’re off to the dentist, again. I don’t think there is much to do for it, but it is a permanent tooth and since his teeth are so fragile from the chemo, we need to be very careful with the ones he’s actually got still! LOL We haven’t really seen a lot of improvements from the Ritalin. We have however, seen more seizures. So I don’t know how long it is suppose to take before we see an improvement in concentration, but it took no time at all before we saw an increase in the seizures. Doesn’t look good for the Concerta now does it. Other than having another cold, Joshua is doing well in most regards. LOL He sees his endocrinologist on Thursday.
Ok, moving on. Nettie. She is off tonight to see a play with our DSS caseworker (she actually doesn’t do much, just files our paperwork with the state for her to receive services as a child with a developmental disability). Linda was looking for something that she and Nettie could do and I suggested a concert or play. So tonight they are seeing “42nd Street” the play. I think she will really enjoy it. She loved Bye, Bye Birdie! Other than that, she is doing fantastic.
Marriela, Marriela. Let’s just say, Marriela has a personality unlike any of the other kids. My mild mannered, easy going, doesn’t move unless you move her child. . . Is anything but that now. Marriela has taken to a variety of tactics to get her point across. Most recently she has moved to the pinch, scratch and then bite technique to alert you to her displease. Peter looked up “bite” in the Marriela dictionary and it stated that it meant “I respectfully disagree with you at this time.” Well, let me tell you, when you are on the receiving end of the bite, it’s not so respectful!! She has taken testing the limits to a whole new level! I’ll be happy when the “terrible two’s” are behind us. LOL As for her health. Well, that could be better, but could be A LOT worse. She sees the ENT tomorrow morning to asses whether or not he thinks she needs to have a bronchoscopy to asses her vocal cords, lungs , tonsils and adnoids. If they do scope her an find that they are inflamed or infected, they will just remove them. But first he wants to assess her and determine if she can handle the anesthesia right now with her chronic respiratory distress she is in. Trust me though, it doesn’t bother her at home!!! LOL
Well, that’s it for now! Let’s go see if the pictures are up on the site yet. J
Take Care and God Bless,
Renee
Saturday, October 30, 2004 12:14 AM CDT
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Saturday, October 30, 2004 11:55 AM CDT
Hi Everyone!
This is going to be a short one because we are on our way out to an Open House at the Firestation down the street. Then we are off to a Stone Castle where they have hay rides, and "trick or treating" around a little make-believe village. It's beautiful out and I can't wait to enjoy the day.
Ok, updates,
Marriela hasn't made the nice improvements we have been so hoping she would make. She is still congested, her breathig rate is still much to fast and she isn't responding to nebulizer treatments. So we have an appointment with an ENT (the same one that treated Joshua and Trayvon) to evaluate her and to take her to the OR for a bronchoscopy to take a lung sample to find the cause of her problems. She is very happy though and runs around like a mad woman, even when she's coughing her head off! She NEVER slows down! LOL
Joshua saw his neurologist and all is well in this area at this time. We are just going to continue to increase his seizure medications until he has "no" seizures. We also started a trial run of Concerta, a time released form of Ritalin. We hope it will help with his inability to concentrate AT ALL!! He will see his Endocrinologist on the 11th to let us know if he needs to start the nightly Growth Hormone shots and if he needs medicine to stop puberty. Since his physical symptoms are very confusing, we have to rely on lab work and it takes several consecutive tests done months apart to make a true determination as to which meds are needed. Then on the 18th he sees the Metabolic specialist to address his osetoporosis.
Nettie is doing well. She had her IVIG on Thursday with no problems. I will be meeting with her doctor on Wednesday to see if we can do something for her monthly "cough" (as she refers to it) since it is soooo problematic for her (painful). It's so unfair to watch someone be in pain for something that they don't even understand! We are hoping to hear from the Immunology clinic out in Rochester as to when we can switch to their clinic since I am very unhappy with the one she currently sees.
As for Trayvon. I had his Parent Teacher Conference and was overwhelmed by just how amazing he is doing in school. He is just below the Average mark (as are many other children who have no issues at all!) and he is soooo liked by everyone in the classroom. I sent out his Party Invitations yesterday and hope this year he will have a wonderful turnout. He did have one scary episode at school though. Apparently he was in Art and doing great, when all of a sudden, he got profoundly fatigued, clamy and his hands were ice cold. They rushed him to the nurse who said she heard no problems with his heart. He rested for about 15 minutes, and then fully recovered. I will be happy when we see the Cardiologist though! Other than that, he is doing fantastic!
Well, this was much longer than I thought because Peter has yet to come down stairs ready to go. Guess I need to go light a candle under his buttocks to move him along! LOL
Take Care and God Bless,
Renee
Wednesday, October 20, 2004 7:19 PM CDT
Hi everyone,
Well, it took me a few tries to figure out the "resizing" process of my new software, but I think I got it now. LOL
Well, what has happened since I last chatted with you all?? Hmmmm, oh yeah. Joshua and Nettie saw the eye doctor today. Joshua's cataracts are still stable and small and not obscuring his vision at all right now. We will just watch them every 6 months and that's it. Nettie did need a slightly stronger prescription, but this is the first increase she has needed in over 2 years!! Yeah, she doesn't have to go back for another year.
Tray also saw his eye doctor yesterday. He likewise needed a new prescription, BUT it was for WEAKER glasses! YEAH. Since we haven't even been patching him like he is suppose to be, I was shocked to hear that he was doing better, not worse! Thank God for small miracles. LOL
Marriela saw the pulmonologist yesterday. He was disappointed she has had such a rough start already to the season. We are now on a 3 time a day steroid through her nebulizer. Other than that, she is already on every other med known to man for asthma, except oral steroids. He is going to try and avoid having to put her on a matinence dose of steroids because she is so young and it will mess with her growth, her bone development and her adrenal glands. So we will pray that she will get through this winter with minimal complications.
Nettie has an abdominal ultra sound on Friday to check out her "feminine" parts. Just trying to help her with her monthly "cough" since it is so hard on her. Lots of blood was drawn and we go back in a couple of weeks to discuss the results.
Joshua saw the KNOT clinic (the long term follow-up clinic). Just before that appointment he had a Dexa Scan (to check his bone density). I requested the results to bring with me to the appointment (even though that wasn't the clinic that ordered the scan) to share the results with. Boy was I disappointed to read the results on the way over to the hospital. Joshua has full-blown osteoporosis of his spine and advanced osteopenia of his hip. We know that his hands and feet also have osteopenia, as the radiologists have commented on it after x-rays. The kicker is, we don't know why. The Nurse Practitioner at KNOT said that nothing he had for his brain tumor would result in this kind of result. She recommened his pediatrician make a referral to a metabolic specialist to determine the cause and prescribe a treatment. One more doctor to add to the list. LOL
Joshua has also been home from school with a whopper of a cold. Tonight it sounds like it is moving to his chest and he has been barking like a seal for the past 6 hours. Other than that though, he's fine.
I just finished braiding Nettie's hair and my fingers are really tired, so I will end there for now. Marriela and Tray have dentist appointments tomorrow. Unless anything astounding occurs in the next day or two, I will update again over the weekend.
Have a great week!
Take care and God Bless,
Renee
Saturday, October 9, 2004 8:41 AM CDT
Hi everyone,
Something is wrong with Caringbridge and it keeps kicking me off when I try to update. I know this is happening to others too, because they’re expressing frustration in their updates as well. LOL
Anyways, let’s try this again. Marriela, despite sounding a bit better by Friday did NOT get well as fast the doctor or I felt she should have, so we went for a chest x-ray. It showed that she had a large pneumonia in her right lung. So we are doing the antibiotics. She was doing much, much better up until yesterday when she started wheezing again. I am watching her closely. She is also drooling a lot thought and she was very fussy last night. I gave her Tylenol and she calmed right down, so I think she may be teething again. Because she doesn’t eat hard foods, it takes that much longer for her new teeth to work their way through her gums, prolonging the agony. Poor thing.
We also went to the GI doctor yesterday. He left her on the Actigall, the medicine they are using to try and dissolve her gallstone. She was exactly the same weight as she was 3 months ago, despite eating over 1200 calories a day!!!!!! I feel like she doesn’t eat at all, but her formula is so high in calories and then when we mix in the extra calorie powder, her bottles have over 400 calories each! She drinks on average 2 - 3 bottles a day, plus eats baby fruit or veggies with rice cereal and her calorie powder in it at least one to two times daily. So they are baffled at her lack of weight gain as am I. However, she did get taller!! We also started her back on her reflux medicine as well as a new one called Protonix (suppose to help the intestines hold onto the good bacteria and get rid of the bad) to help with her stools. In one month we go back and have another ultrasound of her liver and gallbladder to see if the medicine has done anything. We will also have ANOTHER stool sample done (looking for something else gross and disgusting LOL) as well as some blood work that has to be done when she has been fasting.
The rest of the kids are doing well. I did meet with the nurse practitioner yesterday regarding the teams opinion on starting the new method of giving Nettie her IVIG. I was frustrated to tears after our conversation. It hit home like a ton of bricks just how much apathy and lack of knowledge the doctors treating my daughter have. The NP stated that some of the doctors disagree with this method because. . .get this. . . “It’s barbaric, from the dark ages and used in veterinary hospitals. I will be causing Annette a great deal of pain. But, if I insist AND go somewhere else to get the training, then they would write the orders for the medicine and supplies.” I asked the NP if the doctors had even READ A SINGLE THING ON THIS and she insisted yes. But, I know that can’t be true because they would have read all of the amazing positives and the key factor . . . Is it is PAINLESS!!! Where are they getting their information?? Anyways, I called the clinic out at Strong Memorial to inquire as to wether or not any of their kids are doing it. If they are, then I will go there for the training. If not, the Pediatrician, Bless her heart, may be willing to work with me once she learns what she needs to know about it. I believe this is a major turning point in our care for Annette, we are washing our hands of the University Hospital Infectious Disease/Immunology Clinic. So much more was said that was beyond comprehension that I don’t have the energy to even waste time writing about it.
Joshua and Peter are going to Penn State this weekend!! An old college buddy of Peter’s called, had 2 extra tickets and invited Joshua and Peter down to the game. Joshua is SOOO excited. Tray was a little bummed at first (it’s a sold out game, so there was no way to just buy an extra ticket, because it would have been no where near where they were sitting) but Peter assured him he would by him a Happy Meal prior to leaving. . . Well, he’s fine now. The way to Tray’s heart is through his stomach, and I mean that literally!!! LOL
Well, that’s it for now. I’ll write again soon.
Take Care and God Bless,
Renee
Thursday, September 30, 2004 8:32 AM CDT
Hi everyone!!
Trying to be better about these updates.
First, I would appreciate it so very much if you would stop by www.caringbridge.com/il/jordan, and offer your support and sympathy. Jordan lost his battle (and it was a very, very difficult battle) to Hunters Syndrome, for which he underwent a stem cell transplant for. My heart broke, again, as I read the update on another precious child that has left this world much, much to young.
As for the Curkendall gang, well, Marriela is keeping me busy. This morning we had to rush her to the doctors (was going to go to ER, but the doctors and the ER are only one block apart and felt that she was less likely to catch something else at the doctors). She had a very severe asthma attack, the first she has ever had like this. They gave her an emergency nebulizer treatment but that only helped for about 20 minutes, so then they gave her another treatment with 2 more meds in it. When it was done she was doing better so they said that I had to go and fill the prescription for the steroids RIGHT NOW and get a dose into her and give her a nebulizer every 2 - 4 hours. However, if by night time, after her 2nd dose of steroids and several more nebulizer treatments she wasn’t A LOT better, they were going to admit her tomorrow morning. Sooooo, we have been very busy tackling her and pinning her down long enough to get the meds in. She was doing much better until about an hour ago, when she really started wheezing badly and was breathing more than 70 breaths a minute (normal is 20 - 30). So we did the same treatments they did at the doctors and so far they are holding her, knock on wood! But if tonight is more of the same, I’ll be updating from a hospital room. Ughhh.
As a result of the above situation, we had to postpone her Adoption. I was very disappointed, but we all know that it is just a piece of paper. She has been a Curkendall since she moved in on December 17th. I’ll let you all know when the next date is as soon as we know!
Other than that bit of excitement, all is going well. I did an inservice with Joshua’s teachers to show them what his seizures look like. Once they saw the video (we have a video from when he was admitted for the long term EEG monitoring) they all nodded and said they had seen him do all of the things on the video. I was saddened to hear that, because that means he is still having many more than we thought he was. Hopefully once we get his meds up to the full dosage he will settle down a bit. He visited the pulmonary doctor Tuesday. We started him on Flovent to see if it would help him bring up his PFT’s (Pulmonary Function Tests) but since he has no “acute” episodes of asthma there was no way to know for sure if this would help. Well, it’s official, he has asthma and the Flovent was very beneficial! He blew the best PFTs he has ever done AND he has a bad cold!!! So he has to stay on this med now as well.
Tray is doing fantastic! His teachers are raving about how far he has come in just the past few months. I am sooooo pleased that we didn’t hold him back in kindergarten this year! His glasses are just a mess from being stepped on, sat on, rolled on, and dropped so many times, I can’t wait until his next eye doctor appointment. I would go and get new frames right now, but I was waiting to see if he is going to need a new prescription strength before doing it. However, tonight when he looked at me at the dinner table, one lens was at the bottom of one eye, and the other lens was up around the opposite eyebrow. Last time I checked, his eyebrows had no trouble seeing. . . So Peter and I going to take him and get new ones soon.
Nettie is doing great as well. She had her IVIG today. No problems as usual. Didn’t hear back yet on changing the method of delivery of her IVIG, so I put in a call to her doctor.
Well, that’s it for now!!
Thanks for stopping by and God Bless,
Renee
UPDATE 10/1/04
Well, she is a little better, but I am not impressed thus far. I have a call into the pulmonologist because the pediatrician’s office wants me to take her to the ER. I don’t want to do that because she will catch something even worse and that will definitely result in an inpatient stay.
So, the saga continues…
Renee
Thursday, September 23, 2004 8:43 AM CDT
Hi everyone!!
I am amazed at how many people knew it was Joshua’s birthday and I hadn’t even posted it yet!!! Thank you one and all for the wonderful birthday wishes. He really enjoyed seeing that others out in the world knew it was his birthday, that was pretty cool to him (and me LOL).
Sooooo, Joshua turned 9 years old on the 21st!!!!!!!! My God, where did the time go. I see him everyday and it still ceases to amaze me that he is standing before us (or picking on his brother or sister, or wrestling with daddy or hugging mommy or trying to carry the baby somewhere, but none-the-less, before us). In reality, though he is now 9 years old, he continues to be a very, very young 9. Does that make sense? For example, he still believes without a doubt in all things magical (ie. Santa, Easter Bunny, Toothfairy, etc.) There is NO question in his mind that these things are as real as the nose on his face. He also has a very naïve manner about him. He is easily swayed into believing things that most other kids his age balk at immediately. We can still use a random point system to spur him into making the right choices, for example, “Joshua if you put your shoes on in the next 2 minutes you get 100 points.” I should mention here that there is NO chart or reward for any number of points. You just get them. Sortta like the show, Whose Line is it Anyways, where Drew Cary gives out meaningless points. Both Joshua and Tray will FIGHT to get a job done so they can get the “points” daddy has thrown out there! LOL But we tried this when Joshua has friends over and their very first question was, “what do you get for the points?” . Joshua still hasn’t even thought to ask that question yet. Wonderful for us, yes. LOL At 9 he is now 4 ft 7 in tall and about 112 pounds. He is not a small child. But his demeanor is that of a gentle giant and I am so thankful that after all he’s been through, he has this sweetness about him that is hard to find in children his age.
He has a big Spiderman party on Sunday and we are expecting about 20 kids. This will be a breeze compared to previous years where we have always invited the ENTIRE class and had over 30 or 35 kids once the cousins were counted in! It also hit me the other day that he only has 2 more years of Elementary school!!! I felt sooooo old and he is such a “little” boy yet that I can’t imagine him going to Middle School. Alas, nothing I can do about it, dang kids just keep getting old, unlike myself of course. Hmmmm.
Other big news: Marriela’s adoption is NEXT WEDNESDAY the 30th!!!!!! I can’t believe it is actually here! We don’t know yet if all of the kids are going and therefore driving to Boston, or if Peter and I are just going to fly down first thing in the morning and then come back the same night, or if just I am going. We don’t know yet. It’s happening all of a sudden so we are working out the logistics of each situation. Then in a few weeks we are going to have another big Party! An ADOPTION party. Oh yeah, then we are going to have another party, Trayvon’s Birthday is Nov. 7th!!!!
The kids are doing relatively well. Joshua is moving up on his meds some more. We see the neurologist next month and will see what he has to say. If the Lamictal doesn’t hold the seizures back, then we have to contemplate another method (ie. Ketogenic diet, or the Vagal Nerve Stimulator that is implanted surgically). So please pray that the Lamitcal does its job, it’s the last drug option he has for his seizure type.
Nettie went to the pediatrician who made a referral BACK to the cardiologist. She has been complaining of “the room is spinning in my head” and “my heart is beating 5 mph”. In other words, she feels dizzy and her heart is racing. She had some minor abnormalities on her echo the last time we were at cardiology, but they said that her heart function was %100 normal. So who knows what it is. I do know that many girls go through things like this so I am inclined to think it is more stress related, but will feel better having everything checked out.
Marriela continues on her gallbladder medicine to try and dissolve her stone. We see GI in a couple of weeks and they are going to repeat the ultrasound to see if there has been any improvement. She has also developed a cold and is now back on her nebulizer for relief of the wheezing. Other than that though, she is doing great!
Tray is likewise doing wonderful! His teacher stopped me the other day at school and just raved at how well he was doing in school. He brought a book home and blew Peter and I out of the water when he read it to us!!!! We are sooo proud of how hard he works and it is amazing how well he does despite all of the issues he has dealt with in his short 5 years of life.
Did I ever tell you I have amazing children??? I don’t mean to boast (and I can only take credit for one of my children’s genetic makeup) but I have amazing, caring, loving, smart and beautiful children. I am so proud to be a mommy. My heart breaks each and every time I read of another mother or father who is stripped of their right to enjoy seeing their children grow before them. Please say a prayer for all those who have lost a child to any reason, or any fight. May they feel comfort.
Take Care and God Bless,
Renee
Sunday, September 11, 2004 7:35 PM CDT
Hi everyone,
Well, I have survived being alone with the kids for the past 4 days while Peter was in Seattle at the wedding of one of his best friends. It seems he has had a very good time and just called from Atlanta and should be arriving home around 10:30 tonight. Just a few more hours! The baby hasn't slept for more than a couple of hours the past 3 nights and I am seriously sleep deprived. Tomorrow we have Church. Sunday school restarts and Nettie starts her Confirmation classes again.
All are doing well. Nettie had her IVIG with no problems. I did inquire into whether or not she would be a candidate for something called sub-cutaneous IG. Instead of having to get an IV each month and the 4 hour infusion, she would insert a small needle into her subcutaneous tissue and infuse a smaller quantity for only and hour once a month. Nettie and I think this sounds WONDERFUL and it will save her from needing a Port because she is having a very hard time finding veins again. Hopefully the doctors are looking into this for us.
Joshua continues to have intermittent seizures. Today while going for a nice walk he had a rather large one again. If I hadn't been there, he would have wandered right out into the road. He was "marching" in place for a few moments and then he had a bizzare smile and started to just wander away. It lasted only about a 1 1/2 minutes. He was fine after. I guess I'll have to call the neurologist on Monday and increase his meds again.
Tray has is doing great and he loves school. He is deeply saddened that the pool is going to be closed this week for the winter. He LOVES to swim. Right now he and Marriela are dancing behind me.
Marriela is doing well. Still no word from the doctor on her Gall Stone. I just can't imagine what one does with a 2 year old with a gall stone??? She is very moody lately and has been breathing faster than usual. Her lungs sound great so I am inclined to think she is in pain (thus the lack of sleeping at night as well). I don't know where and she isn't bothering any one particular spot or another so it's just a guessing game. She went to her Open House at school and did great! No problem with asserting herself and making herself at home in virtually ANYONES lap (including the other 2 year olds in the class!).
Well, gotta go get the kids to bed. Talk more later!
Renee
September 5, 2004
Hi everyone!!
Well, it’s the day before Labor Day. It seems unfathomable that we are now nine months into this year. Where does the time go!??? My body feels older by the day, yet my mind still thinks I’m only 20 (ok, maybe 25, but not a day over 28!!).
Peter just left with all of the kids to go to the playground. It’s my every other month or so, intensive cleaning day. It’s beautiful here and the kids were fighting me on going out, so I made them go with Daddy. Poor things. LOL
Everyone is doing well. Anxious to have school start up soon (Thursday). Tray and Joshua have had their fill of one another and need new faces to torment. Just kiddin’. . . about the new faces. They have a very bitter sweet relationship right now and need to find some time away from one another. In addition, Joshua thrives on structure and right now, structure is just a word in the dictionary. There is not a shred of evidence of any structure in this house for the past 2 weeks since they got home from Camp. Alas, I’m just not that organized.
Marriela continues to require daily nebulizer treatments to contend with the chronic chest congestion that started over a week ago, following a long string of nightly fevers. At least the fevers have stopped and she is now going most of the day without coughing to much. She visited the pediatrician who said we were doing all that needed doing at this time, but if by Tuesday she’s still wheezy, then she will need a short dose of steroids. This is very early in the season to need steroids already so we made our appointment with the pulmonologist to determine what meds she needs to try and stay on top of her fragile respiratory status. She has had a GREAT summer and has been off ALL of her breathing treatments and asthma meds for almost 2 months. Hopefully the break has strengthened her lungs so she has a better winter this year than she did last. In other Marriela news, we had our ultrasound of her belly and guess what!!!… she has a HUGE GALLSTONE!! That explains the very elevated lab she had and why she has been miserable on and off the past several months. It may also explain the low grade daily fevers. So now we are just waiting on the results of her Sweat Test (for Cystic Fibrosis) and the remainder of her lab work that will be drawn on Tuesday. Then they will give us a game plan on how to help her incorporate new foods and to gain and maintain her weight. I am so hoping that she won’t require surgery to address the gallstone. I guess we’ll just have to wait and see.
Tray has lost not one, but TWO teeth in less than 3 days!!! And there is one more on the way out! He looks so blessedly cute with these gaping holes in his smile. I am taking pictures in tomorrow to have them developed and will post them by Tuesday. He got $2 from the tooth fairy (to him, 2 $1 bills is more than one $5 bill, so the tooth fairy gets a break until he figures out the math - unfortunately, Joshua got it way to fast and each tooth cost the poor tooth fairy $5 each! LOL) So he used his money to buy Chinese food. He stated today that “When I grow up, I want to be a Chinese boy so I can eat Chinese food every day.” That’s my boy. He sees a problem and goes for the gusto to solve it. He needs Chinese food, so he goes Chinese.
Joshua continues to do well. He did have a rather large seizure today, but unfortunately, that was Mommy’s error. I didn’t realize that he hadn’t had his morning meds yet and it was 11:30am (3 hours past his med time). He is very time sensitive with his meds and I was deeply saddened that I had allowed him to have a seizure. He was fine and was acting as if nothing happened immediately after it was over, but it was still the principal of the matter. I pride myself on how well we manage our kids medical needs and their MANY, MANY medications. But today I let it slip. Shame on me.
Nettie is doing great. We went school shopping the other day. It went great until it was time to accessorize her wardrobe. We went to get some earrings and there it was determined that Mommy and Nettie have VERY different ideas on what “too big” is for an earring. Nettie wants hoops that hang and touch her shoulder, Mommy would prefer a small gold cross, or a nice pearl, but was willing to go for a 2 inch hoop. Begrudgingly she chose three pairs of “tiny” earrings (these things would make my ears hurt!). Then we went shopping for some new underwear. Well, let me tell you, my 14 year old daughter thinks this mother is going to let her get THONGS! Not in this lifetime, or the next my dear!!!!! LOL
She got a nice 6 pack of “bikini” cotton panties that NO ONE is ever going to see! I was happy with “my” choice in underclothing. Hehehehehe She keeps saying that I just want her to be 5 years old again. Hmmmm. . . Maybe she has something there. But I am still not giving into this fight for at least another 10 years!!! Boy would she be mad at me if she knew I was talking about her underwear here!
Well, I better get cleaning since that is what I sent Peter and the kids away for. Please check the past Journal entries to find the web addresses of some kids that really need your prayers.
Take Care and God Bless,
Renee
Monday, August 30, 2004 10:01 AM CDT
Hello everyone!
I'm sitting here as my sons discuss "strangers". Joshua is explaining to Tray that the "bad guys" might have chocolate cake and if you eat it, he could grab you and take you away. Tray states that if "a bad guy sneaks on me and chokes me, he will call Joshua to tell mom that a stranger is choking him." Tray last night asked me if the "moths are going to eat him and his shorts while he was sleeping?" I asked him "what moths are you talking about?" and he said the ones that eat clothes like on cartoons. I was worried that we had a swarm of moths in our house somewhere the way he was talking!! Though I think it would it have been easier to kill a swarm of bugs that it was to explain to Tray that moths don't eat people and very rarely eat clothes. He still doesn't believe me. LOL
All is going well. Nettie visited her new Middle School last Wednesday. It went very well and we had a nice meeting with her principal and teacher. I am praying she has a good year. She has also started working out at the YMCA. She LOVES it. I just explain each machine and how it works by showing her what dance moves she could do better by using the machine. That is all the motivation she needs!! She keeps saying she wants to be able to "shake her booty" like the hip hop dancers. She gets her IVIG on Wednesday of this week. Other than that, she's been pretty laid back since getting home from camp. Which by the way, she LOVED!! I am sad she only has 2 more years to go, so I will be looking for an additional camp for her to attend next summer that goes up to age 18 so she will still have something to look forward to after Hole in the Woods ends for her.
***note*****
Joshua is holding a small statue of a little boy reading a book (child is naked). He just explained to Tray that it is a statue of him when he was naked reading a book that's why his booty is showing. I had no idea he thought the statue was of him!!!!! How funny!!!
Ok, back to the update...
Tray is bored out of his skull! He is addicted to this computer game called Toon Town and he wants to play it 24/7. God forbid if I even look at the computer! He can also try the patience of a Saint, but he is so blessed cute about it, it's hard to get mad at him!! He is so pleased that he gets to go to camp next year as well. What will I do with only one child at home!! LOL
Joshua is doing well. He has finished the latest increase in his med and seems to be doing well with it. I can't wait for him to be back in school and to see how much better he learns now that we have all of these seizures under control!!! I just know that he is going to do GREAT this year. He has been healthy now for almost an entire year, his seizures are virtually unseen, we've weaned off one med and will start weaning another med soon. With the exception of decreases in his PFT's at his most recent Pulmonary appt. he is doing great. We put him back on Flovent to see if we can get his lungs working a bit better. But overall he is doing EXCELLENT!! Even his behavior is much better as well as his stamina. He will also start working out at the YMCA with other kids his age in the next week or so.
Marriela is doing well. She recovered from her fever, but yesterday woke from her nap with a bad cough, which has not improved. Her lungs are clear though. We had the first half of her labs done and her one number - alkaline phosphotate - has come down quite a bit, from almost 5,000 to just under 900. Granted the normal limit is only 100, but it is far improved. She has an abdominal ultrasound tomorrow morning, a Sweat test next week on the 3rd and then the rest of her blood work on the 7th. Hopefully we will have all of the answers we need by then so that no further tests are needed. She hasn't gained any more weight, but she is definately starting to get taller! We started her new formula, Peptamin Jr. and she likes it! What nasty stuff that is! She starts school on the 13th.
Other than that, all is going well. Peter starts school full time in the next few weeks and I have initiated the process of completing my Masters in Special Education. I am getting the itch to go back to work once Marriela is in school full time in a year or two. But since I haven't worked in so long and never finished my masters, my certification has expired so I can't work in the education field (which is what I love!) until I finish my Masters and get my permanent certification. Then I will be duel certified in Special Education and as a Teacher of the Speech and Hearing Impaired.
On a last note, I would like it if you could take just a few moments to visit the sites below.
Take Care and God Bless,
Renee
Please say a prayer for a few friends of ours:
Jordan has been through soooo much in his short little life. He is in serious trouble now and needs all the prayers and support you can offer!
http://www2.caringbridge.org/il/jordan/
Baby Allie is absolutely adorable, and is having major trouble following a bone marrow transplant just 40 days ago. Her cancer is back already. Please stop by and let her parents know they are not alone.
http://www.scotthousehold.com/week_17.htm
Maya is an adorable little girl who was adopted by a fantastic mom! Maya has a mitochondrial disorder that has caused difficulties with virtually every body system. She is in the hospital right now as they figure out how to help her little stomach work better.
http://www2.caringbridge.org/mi/mayam/
Wednesday, August 18, 2004 9:07 AM CDT
Hi everyone!! I know, it has been a full week since my last update. We have been very busy traveling back and forth to Elmira to see my Father-in-law who is still in the hospital. HOWEVER, he is doing fantastic and is set to be released once they have the equipment he needs in the house (like a walker, railings, toilet seat, etc). Thank you for all that prayed for his well being and recovery. He was given virtually no chance of surviving by the doctors, but, yet again, another Curkendall proves them wrong. Boy am I glad that we have that characteristic in our family. LOL
The kids are doing well. Joshua and Annette are off to camp. They went out on the bus on Monday morning. I am going out to my mom's house tomorrow (she lives only 20 minutes from the camp) and Peter will meet me out there Friday night. We will be going up to the camp together (the first time in 5 years) to see the end of camp Talent Show. I can't wait!!
Tray and Marriela are home with me and Tray has been spending time with his cousins and swimming. He misses Joshua alot and asks all the time, "When is Joshua coming home?" I am going to take them to the beach when we get to my mom's house, he LOVES the beach! I've also spoiled him a bit with Happy Meals, really need to slow down on that one. LOL
Marriela's GI clinic called with her lab results. Everything was perfect except one test. Something called the Alkaline Phosphotate which was 4,950 (normal 0-100). I guess one of the reasons it can be elevated is a bone issue, most commonly, Rickets. Rickets is a Vitamin D deficiency usually seen in third world countries. However, Marriela had Rickets when she was in the NICU and actually had broken upper right arm as an infant. So she has been referred BACK to endocrinology for follow-up on that issue. I have to take her into the pediatrician's office for tons of lab work sometime soon. Oh yeah, she finally broke her fever 2 days ago. She held onto it for over 5 days with the second day being the worst (104 degrees with no response to the Motrin or Tylenol) but then she started cooling down a bit each day until POOF, no more temps. She's acting just fine now. So now we have to wait some more to see what else they can find to diagnosis her with. Sigh...
Everyone else is doing great!
I hope you are all enjoying your summer!
Take Care and God Bless,
Renee
Wednesday, August 11, 2004 1:09 PM CDT
Hi everyone,
First, before I say another word, HAPPY BIRTHDAY MARRIELA!!
Marriela turned 2 years old on Saturday, August 7th. We are just so blessed to have this beautiful child as a member of our family. She has brought joy, smiles and happiness into our lives since the day she arrived with me from Boston. We meet her the day before her 1st birthday and now we celebrate her 2nd birthday in our home. Thank you God.
Now, with that said, I am sad to say she hasn't even had the chance to have her party yet. Peter's father became very, very ill last Thursday night and was rushed to the hospital. He and everyone else, including the ER, thought he was having his 6th heart attack. But when the numbers didn't come up right and the pain began to move down into his belly, they started doing some more searching. After 11 hours they discovered that he had a blood clot that caused part of his bowel to die. He was very, very sick and is still in the ICU after having emergency surgery to remove the dead bowel. Any prayers would be greatly appreciated!! I have called him Dad since the day we met almost 14 years ago. I love him like my own father and need him in our lives.
Since we have been traveling so much and the family is rallying around Dad, we had to put the party plans on hold for a bit longer. Honestly, Marriela has no idea what it all means, but none-the-less, a big party will take place when there are family members around to have one with! LOL
Speaking of the baby, she has been fighting a fever all day today. I think she caught something while we were visiting the hospital (or any of the restaurants, or the hotel, or the strange playgrounds we took them to, who knows). She woke up from her first nap with a 101 temp and less than a half hour later it was 102, where is sits, despite a good dose of Tylenol. I'll give her some Motrin when she wakes up if she's still cooking.
Joshua and Nettie are all packed for camp. I finished early in case we need to make another emergency trip down to see Dad (he's about 2 hours away in Elmira). Joshua will be going up on one of his meds starting tonight to see if we can get his seizures back down to "none" again. He gained just a tad of weight and that may be enough to need a slightly higher dose.
Nettie and Trayvon are doing great!
Well, that's it for now. Gotta go clean before the Adoption worker gets here at 3:00.
Take Care and God Bless,
Renee
Journal
Thursday, August 5, 2004 7:37 AM CDT
Hi everyone!
I awoke today to a relatively "chilly" summer morning. It's been very hot and humid but today it is only 60 degrees and rainy out. The bummer is, this is Joshua's and Annette's big trip to a water fun park today. :-( Oh well, hopefully it will warm and dry up by the time they arrive.
All are doing well. We went to visit my mom last weekend and had a very nice time. This weekend I am going to Washington DC for the Pediatric AIDS Clinical Trial Group semi-annual conference. I fly down tommorrow morning and fly back on Sunday night. I really enjoyed it the first time so I hope it is as good or better this time.
Yesterday I had to take Marriela out to Rochester for her GI appointment. They were very nice. I didn't spend much time with the doc, but the Nurse Practitioner spent over an hour and then shared everything with the doctor and nutritionist. They ran some more blood work looking for signs of illness or infection that may be causing her loose and frequent stools, bloated tummy and intolerance for so many foods. They did a more detailed test for Celiac Disease (an inability for the body to digest Gluten - such as wheat, barely, bran, etc.). They also checked for some allergies (which we already did, and were negative), blood counts (to check nutritional status, and for signs of infections - which we already did here and was normal). We also did an x-ray of her belly to check for stool and gas which can be signs of infection or poor gastric emptying (which we do know is a problem for her). They also gave me some new powder to add to all of her food. This powder has 42 cal per TSP. That's way more concentrated than the baby rice which only has 60 cal. in a 1/4 cup! I also got some samples of the new formula we are going to switch her to, just to see if she will actually drink it since we will no longer be getting her Nutramigen. I'm trying the formula out in just a minute. LOL They have also called the doctor here and asked for an ultrasound of her liver and belly and to for a "sweat test". The sweat test checks for Cystic Fibrosis. No one thinks she has Cystic Fibrosis, but you HAVE to rule out the big things so you can get a more detailed picture of what may be going on. So, since she has definate lung issues, and she has loose stools and isn't growing at a normal rate - these are all possible signs of CF, so we have to do the test. I'm not worried. They also brought up the fact that her mom was HIV and was I SURE she was tested and was negative. I assured them that Marriela had been properly tested and that unless she was shooting drugs up when I'm not looking, there was no way in hell she was positive. They still spoke with the immunology doctor who also knew me and he assured them as well, "If mom says she has been tested and is negative, then the child is negative, this is one mom I would trust implicitly." LOL :-) I have to admit when I heard this, I was a little bit cocky. hehehehe So anyways, I should hear from her doctor here soon as to when the other tests are scheduled.
As for her walking, well it looks a bit better. I am not AS worried, but still don't like that it has changed. I have to e-mail her hospital PT today to let her know that she can not wear her braces at all, since they make her walk like a piroetting (sp) ballerina! Talk about toe walking! This is despite the fact that the brace guy told me that what she was doing was suppose to be phsysiologically impossible. LOL Not with one of my kids!!!
The rest are doing great! Joshua has begun to have a few break through seizures, but nothing huge. I'll call the doctors and ask them to up his Lamictal just a tad to see if we can get him back down to virtually none again.
Tray is loving summer school and is doing great. He has had an awesome summer and has really taken like a fish to the swimming pool! He was terrified at the beginning of summer, now we can't get him out of the pool!
Annette is so excited that camp is just around the corner. I am so happy that she loves camp so much. It really gives her something to look forward to and she has such a great attitude about going. Some kids her age are just starting to resist the concept of going to "camp". Not Annette. She can only go through her 16th year, so she only has 2 years left. I haven't shared that with her yet. She'd never understand. Her walking and strength training have continued to improve! I had a dream that she was walking around the house the other day (granted it was not a "normal" walk like you and I, but it was her walk and she was doing it all by herself). I think the day will be here sooner than later when she will be walking independently. At least that's what I continue to pray for.
Well, that's it for now!
Take care and God Bless,
Renee
Thursday, August 5, 2004 7:37 AM CDT
Hi everyone!
I awoke today to a relatively "chilly" summer morning. It's been very hot and humid but today it is only 60 degrees and rainy out. The bummer is, this is Joshua's and Annette's big trip to a water fun park today. :-( Oh well, hopefully it will warm and dry up by the time they arrive.
All are doing well. We went to visit my mom last weekend and had a very nice time. This weekend I am going to Washington DC for the Pediatric AIDS Clinical Trial Group semi-annual conference. I fly down tommorrow morning and fly back on Sunday night. I really enjoyed it the first time so I hope it is as good or better this time.
Yesterday I had to take Marriela out to Rochester for her GI appointment. They were very nice. I didn't spend much time with the doc, but the Nurse Practitioner spent over an hour and then shared everything with the doctor and nutritionist. They ran some more blood work looking for signs of illness or infection that may be causing her loose and frequent stools, bloated tummy and intolerance for so many foods. They did a more detailed test for Celiac Disease (an inability for the body to digest Gluten - such as wheat, barely, bran, etc.). They also checked for some allergies (which we already did, and were negative), blood counts (to check nutritional status, and for signs of infections - which we already did here and was normal). We also did an x-ray of her belly to check for stool and gas which can be signs of infection or poor gastric emptying (which we do know is a problem for her). They also gave me some new powder to add to all of her food. This powder has 42 cal per TSP. That's way more concentrated than the baby rice which only has 60 cal. in a 1/4 cup! I also got some samples of the new formula we are going to switch her to, just to see if she will actually drink it since we will no longer be getting her Nutramigen. I'm trying the formula out in just a minute. LOL They have also called the doctor here and asked for an ultrasound of her liver and belly and to for a "sweat test". The sweat test checks for Cystic Fibrosis. No one thinks she has Cystic Fibrosis, but you HAVE to rule out the big things so you can get a more detailed picture of what may be going on. So, since she has definate lung issues, and she has loose stools and isn't growing at a normal rate - these are all possible signs of CF, so we have to do the test. I'm not worried. They also brought up the fact that her mom was HIV and was I SURE she was tested and was negative. I assured them that Marriela had been properly tested and that unless she was shooting drugs up when I'm not looking, there was no way in hell she was positive. They still spoke with the immunology doctor who also knew me and he assured them as well, "If mom says she has been tested and is negative, then the child is negative, this is one mom I would trust implicitly." LOL :-) I have to admit when I heard this, I was a little bit cocky. hehehehe So anyways, I should hear from her doctor here soon as to when the other tests are scheduled.
As for her walking, well it looks a bit better. I am not AS worried, but still don't like that it has changed. I have to e-mail her hospital PT today to let her know that she can not wear her braces at all, since they make her walk like a piroetting (sp) ballerina! Talk about toe walking! This is despite the fact that the brace guy told me that what she was doing was suppose to be phsysiologically impossible. LOL Not with one of my kids!!!
The rest are doing great! Joshua has begun to have a few break through seizures, but nothing huge. I'll call the doctors and ask them to up his Lamictal just a tad to see if we can get him back down to virtually none again.
Tray is loving summer school and is doing great. He has had an awesome summer and has really taken like a fish to the swimming pool! He was terrified at the beginning of summer, now we can't get him out of the pool!
Annette is so excited that camp is just around the corner. I am so happy that she loves camp so much. It really gives her something to look forward to and she has such a great attitude about going. Some kids her age are just starting to resist the concept of going to "camp". Not Annette. She can only go through her 16th year, so she only has 2 years left. I haven't shared that with her yet. She'd never understand. Her walking and strength training have continued to improve! I had a dream that she was walking around the house the other day (granted it was not a "normal" walk like you and I, but it was her walk and she was doing it all by herself). I think the day will be here sooner than later when she will be walking independently. At least that's what I continue to pray for.
Well, that's it for now!
Take care and God Bless,
Renee
Wednesday, July 28, 2004 11:31 AM CDT
Hi everyone!
Oh my, it's been a while since I last updated.
Things are as hectic here as ever. Last weekend Peter and I went down to Elmira (Peter's home town) for his 20th High School Reunion (NO KIDS!). It was great to get away for a bit. We even stayed in a hotel and "almost" slept in. LOL I know alot of Peter's HS friends because I attended Elmira College and then lived there for an additional 2 years. I was very good friends with many of the people Peter hung out with, but we didn't even realize that until several years after we knew each other. What a small world!
The kids are doing well.
Joshua has been virtually seizure free and I have a call into the doctor to start weaning him off of his Neurontin. This is his last 3 times a day drug and then he wouldn't need to get any in school in September!! I am so thrilled with this new drug Lamictal, I just pray it continues to do the wonderful job it is right now for a very, very long time.
Nettie is at the hospital today with her nurse getting her IVIG. She is doing wonderful with her walking and her new home PT is so impressed with how fast her strength in her legs and hips has progressed! She is going to the gym with Daddy tonight to use the reclining bicycle. She's bit upset with me because I nixed a plan she had to color her hair NEON ORANGE! Sorry, but I feel strongly that Neon colors do not belong on a persons head (clothes, sure, nails, sure even a bit of bright make-up once in a while - but on your head - ABSOLUTELY NOT!)LOL She'll get over it... I think.
Tray. . . let's just say, he could find fault with God Himself if left alone with him for 5 minutes. He is my perpetual "beefer" LOL. He is doing wonderful and is blowing me away with how quickly he is learning as we practice classwork this summer. His writing is wonderful (considering that he couldn't write at all just 5 months ago!). He is now adding groups of objects upto 5 (and just 4 months ago still couldn't count to 50!). We practice reading 15 sight words each night and he now knows them all so I am changing the words to a new list of 15, by the end of summer he should have more than 50 words he will recognize by sight alone. We are also now working on "family groups" (ie. the "an" family like van, man, tan, etc. etc.) and HE GETS IT!! God bless his little heart! We are doing well with the new change in meds. We increased his Lasix a bit to see if that helps and sure enough, he stopped taking daily naps, still does one occasionally, but not daily. He has also not awoken with any puffy eyes since the increase either and the vomitting is only about 2 times a week now instead of one or two times a day. So we know he is just VERY, VERY sensitive to any excess fluid build up.
Marriela is imitating more and more words daily. She says Mommy all the time now. When I say, "all the time" I am being very literal there! Everyone is mommy now and even most objects she can't reach are now referred to as mommy. But it is still wonderful to hear her adorable voice cry out Mommy about 2,000 times a day. LOL She is still daddy's little princess and knows it. We have been a bit concerned lately because she has begun to do some funky things with her right foot. She was walking wonderful, even without her braces. But we all agreed she seems better and more confident with the braces, so we were ordering her new ones. While waiting for the new ones to come in, she started turning her foot in and dragging her toe while she walks. I DO NOT like what I see and took her straight to her hospital PT. She recommened some changes to her new braces, but it does not seem to really improve the situation. Now I have an appointment scheduled for Aug. 11 to see the ortho doc to see if he has any ideas about what is happening. It really does change her overall appearance and walking abilities when she does the toe drag. Food wise, she is doing well as long as she doesn't sneak anything she isn't suppose to have, like she did last night! While washing the dishes after we had a speghetti dinner, I found her eating a couple strands of spaghetti out of the garbage can (I had just scrapped them in from my plate). I took them away but didn't know if she ate any or not. Well, at 11:30 pm her stomach was so swollen, she was clearly in discomfort (wouldn't even drink her water bottle to go to sleep) and just cried and cried. I finally gave her some Tylenol and Mylanta to see if that would help. It must have because she was asleep just 30 minutes later. She has her appointment with the GI doctor out at Strong next Wednesday, I can't wait to take the pictures I have taken of her after she eats a new food and she swells up like a blow fish! Hopefully they will have some ideas.
Nettie and Joshua are both in the Kumon math and reading program this summer. It seems to really be working for them. Both kids have made some very, very impressive gains in their fluency, and comfort level when reading. It's expensive as hell, but in the end will be worth it if we can catch Joshua up to the fourth grade (where he will be this summer) and get Nettie as far as she can go with her reading and math. I'm glad we did it.
Well, that's it for now. This weekend we are going out to Glens Falls to stay with my mom for a bit to visit. Then I am going down to Washington, DC to the Pediatric Clinical AIDS Trial Group Semi-Annual conference. I went once before and loved it, so I'm thrilled I'm going again.
Talk soon,
Take Care and God Bless,
Renee
Wednesday, July 7, 2004 7:51 PM CDT
Hi everyone,
Oh boy is this a busy summer!! The kids have started back at Summer School and things are a bit quieter. Actually, that’s not entirely true. Tuesday was the first day of summer school and poor Trayvon had 2 appointments. He was very sad that he missed his friends in the morning. He saw the ENT who said his ears are “great”! So now we don’t have to go back until mid February. I took him to school for 2 hours and then he had to go for his CT scan of his head. The neurologist is looking for signs that maybe his sutures closed too early, a possible explanation of why his head is so small. The CT scan was easy and we were in and out quickly. Then today, Nettie had an appointment with the orthopedic surgeon who monitors her hips and back. Plus, Marriela had a weight check with the pediatrician.
Nettie and Joshua are off to their first field trip tomorrow with their class. They are going to see a movie. Their choices were Spiderman 2 and Garfield. Joshua just saw Spiderman 2 with Peter and Tray and a family friend on Saturday, but he is choosing that one again! Nettie has already seen Garfield, but she is going to go to that one again. Strange creatures my children….LOL
Nettie is doing well. She is currently getting her hair braided by the granddaughter of her nurse. Nish is only 13 but can outbraid anyone I know (definitely me!). Nettie got her new braces and they are much better for her. I think that the walking thing will go much easier for her with these. She is having a major problem with the concept of ordering a power wheelchair. She feels that it will make her look more “disabled” and she doesn’t want that. She expresses daily her frustrations at being “different” and “not cool like the other kids”. I breaks my heart and though I express my love for her daily, she’s a teenager. As a teenager she looks away from home for acceptance and she isn’t finding it in the way she would like. Very, very sad. She has started counseling and I really think that this will help her see the positives in her life as oppose to focusing on the negatives all the time.
Joshua is doing well. He DEFINITELY has less seizures (as a matter of fact, I’ve seen NONE the past 7 days!). He is very tired though and has begun taking daily naps again. I think, however, this is the effect of the heat in combination with the new drug, Lamictal. He turns very, very red in the sun and is visibly tired after just a short time in the heat. This should improve with time. He is otherwise doing very well.
Tray saw the cardiologist and we discussed his new symptoms. Tray has been vomiting daily again despite adequate reflux control. He has also been waking up with swollen eyes as he has done in the past. This is all indicative of fluid retention. He had an echo and it looked “great” according to the cardiologist. However, he also can’t explain the need for so many meds so he agreed that we need to treat the new symptoms aggressively. We have increased his lasix again to 30mg 2 times daily. If this is not enough, then we will increase one of his other diuretics as well to see if we can even him out a bit. I do have to say that the vomiting has decreased since we changed his meds (though he lost his entire lunch on the table at school today! LOL). The cardiologist just said that we need to pray that as he gets larger his lungs will get bigger and therefore will tolerate more pressure and fluid. If they don’t then his heart won’t last and his only option will be transplant. But that is a ways away, we have lots of other meds to try if he needs them.
Marriela is doing well for the most part. Respitory wise she is fantastic!! However, she has lost weight and is down to 21 pounds again. She is having diarrhea with most new foods as well a horrible rash on her bottom. So I have had to cut out all wheat, gluten, oat, barely and dairy products from her diet. Let me tell you, it makes for a very interesting shopping experience when all you can buy is corn and rice products that have no dairy in them!! Otherwise, she is doing very well. She is walking all over and now calls me “mommy” all the time. She likes to say my name like she’s mad at me and then proceeds to babble of a list of demands that make no sense to anyone but herself. Nettie loves to just sit and laugh at her. But this agitates the crap out of Marriela so she turns and yells “ahp eh” or “stop it” over and over. J
Well, Peter and I have officially been married 11 years now. July 3rd marked our anniversary. I ceases to amaze me where we are today. What a ride this has been and I wouldn’t have wanted any other partner in the world for it. He is an awesome father, wonderful husband, and a great son and brother. I married into a wonderful family and love them as much as my own.
I love you Peter.
Well, that’s the latest and greatest from Curkendall land.
Take Care and God Bless,
Renee
Tuesday, June 29, 2004 5:17 PM CDT
You can tell it's summer time! It's getting harder and harder to find time to update the website. Tray has finished his baseball season and this Thursday he has his baseball banquet to recieve his trophy. I am excited for him, it will be his very first trophy and all he has done since seeing Joshua get one, is ask when is it his turn. Well, kiddo, now it's YOUR turn!! LOL
Everyone is doing well. We had a new pool installed today. It is much larger than I had anticipated! Of course, it is raining now, so can't even enjoy it yet!
Marriela has been having some more difficulty with her food intake. It seems that each time we introduce a new food to her, that has any type of wheat or grain other than rice in it, she gets bad diarreha. So we are very, very limited in the foods we can feed her in addition to the fact she can't tolerate ANY dairy either! But she did get up to 22 lbs and is growing taller. She had new braces made today and Nettie picked up her new ones. Marriela walks much better in the braces than she does out of them (but to the untrained eye, she looks great without them too). She has made some great progress with her respitory status and has been weaned off of her nebulizer tx all together at this time. Winter will probably be a problem again, but for right now, she is doing great!
Nettie is a now a proud middle schooler and we are the proud parents of a middle schooler!
Joshua is now in fourth grade and Tray is a first grader. AMAZING.
Well, a family friend just arrived so I will finish this later.
Love,
Renee
Monday, June 14, 2004 7:49 PM CDT
Hi everyone,
Well, finally, I have the ability to send out an update from the privacy of my own home on my new computer. I am so sad to have to say good-bye to my old one and I am still praying that they can retrieve all of the files and pictures I have saved on there, but alas, it was never going to be my faithful servant again.
I have actually started several updates and for some reason was booted, disconnected or called away from them, thus losing them all. Very, very frustrating.
The kids are doing well. Last update I told you that Nettie had a trip to the ER for her arm, which is now fully recovered. She and I went camping with her Girl Scout troops “mother daughter” camping weekend and had a blast! She continues to do well and is still very motivated to walk alone, so she is working hard in PT. Today he began using a therapy ball to have her do a new set of exercises. She also performed in the chorus for the play “Bye Bye Birdie” and did a fantastic job. She has admitted now, that she really would like to try a part in the actual play next year in Middle School. “Not one that I have to remember a lot of words for, but something on the stage.” I think that’s AWESOME!! She is really struggling with her body and has expressed many negative feelings about herself lately. We are working hard to foster a positive self image and as a boost to her desire to be “fit” we are signing her up at the same gym Peter and I attend. I really hope that the exercise coupled with her good eating habits will help her body “reconfigure” itself so she can be more accepting of herself.
Joshua is doing well and has just made another increase on his new med tonight. He is still having several small seizures daily, but the larger ones that also come with the confusion and inability to speak have not really been all that present. He did not tolerate the heat well at all today so that is something that we will have to watch closely for the summer. He was VERY red and fatigued and by the end of Tray’s t-ball game, was having multiple seizures in a row. Once in the A/C he came around, so it was definitely heat related. He also has been struggling with a rash on his arm. I am sure it is ringworm (boy how I hate that word since it isn’t a worm at all!!). But when I put on the cream to treat it, it got A LOT worse!! So much so that I had to take him into the doctors to have it seen. She agreed that the infection looked like an allergy to the medication and said to stop treating it ASAP. Sure, no prob, but then what do we do about the underlying fungal issue???? So we gave it a break for five days and let the inflammation go down. I started a new med and hopefully he won’t react to this one negatively, otherwise we have to go to an oral antifungal for 2 months! Otherwise he is doing very well.
Tray is doing fantastic in both health and school. He is also kicking butt in T-ball!! He is an outstanding fielder (loves going for those grounders). He went and saw the neurologist out at Strong Memorial Hospital in Rochester, NY. I went because we had made the appointment 4 months ago when he was having those terrible migraines, which, by the way, he hasn’t had one since the appointment was made. LOL However, we waited four months so I figured we might as well go so if he does start having them again, the doctor will know him and will be able to prescribe some medicine for him. I also wanted to discuss his microcephaly (very small head size). The doctor really didn’t think it was all that small until he measured it and found out that it is the same size as the average 18 month old and he is 5.5 years old!!!! He did look at his MRI that I had brought and had lots of compliments for the amount of maturation and meylination that he has in his brain! So I presented my concern that if his brain is continuing to grow at a normal rate but his head hasn’t gotten ANY bigger in the past 2 years, isn’t that going to pose a problem in the relatively near future??? He agreed and ordered a CT scan of his bone plates to see if he has premature closure of the sutures. The doctor didn’t feel that this was the case because Tray’s head is very symmetrical, just small. Usually if one or two plates close to early then the head becomes malformed, but if ALL of the plates close early then the child sufferes from problems almost from birth (not Tray’s case). So, despite the fact that it will probably not answer a single question, we are going to go ahead with the CT scan and see if they see anything fixable. I don’t know what the other options are for my baby if this continues to be a problem. We’ll just have to wait and see.
Marriela is doing great. She has not needed a boost of steroids in over a month and a half. She is now weaning off of some of her meds and hopefully we will be nebulizer free by the end of the summer (just in time for falls viruses again! LOL). She did start to have some more tightness in her Achilles tendon so she began toe walking again. This is not good for her so she is back into her ankle braces. She continues to try and toe walk even in the braces at this time so we are hoping that it is just a temporary thing, or she will have to go back into the taller braces that go up to her calf. She is babbling all the time and has begun to imitate almost all words (though you usually only get the number of syllables grunted back vs. an actual clear word, but it’s a start). She is now getting Speech Therapy once a week as well. She is definitely getting taller and I can’t wait to see if she is any heavier (she sure feels it!).
I have officially begun working out at the gym today. I am sore, but hopefully with some comittment on my part, this will be something that I will fall into habit with and actually start to like it in the future. LOL
Well, that’s it for now.
Take Care and God Bless,
Renee
Thursday, June 3, 2004 1:01 PM CDT
Hi everyone!
I know it's been a long time for this update and I only have a very few minutes to get this one out. Our computer met with a lightening bolt that was just to much for it. . . alas, it's been retired. So now I am down at the public library attempting to access my aol account, unsuccessfully I might add, and trying to update this site! LOL Marriela is trying to be patient with me as I type and stuff bits of BK french fries into her mouth in a desperate attempt to keep her "library quiet".
All is moving along here in Curkendall land. Nettie was bitten by a nasty bug (she doesn't remember where or when) but it caused quite and infection that resulted in an ER trip for antibiotics and benadryl. She is doing much better now. She also had to visit her surgeon to identify a nasty little spot around her g-tube. He gave us some silver nitrate sticks to use (it is a long stick that looks just like a match that has a chemical on the tip that "burns" abnormal skin "thingys"). She does NOT like it at all, but it did the trick and all seems to be well again.
Joshua is still having his seizures, but, we think they are getting less. Maybe it's wishful thinking, but hey, even that's better than nothing. He goes next week to see the Epilepsy Center for a follow-up.
Tray is doing well. He is going to see a neurologist next week as well to determine if there are any medications available to address his migraine headaches. I am also going to inquire a bit more about his microcephaly (his very small head size) and ask if there is nothing that can be done to insure he continues to do as well as he is in the future. He LOVES baseball and is doing very well at it.
Marriela is holding her own. She is now almost 21 pounds and she has definately gotten taller. She is trotting instead of just walking (her speed takes me by suprise on a regular basis!). She has also mastered the art of ascending and descending the stairs with no difficulty (much to our dismay). She has had some intermittent difficulty with her lungs, but seems to be moving along very nicely. If all goes well this summer, it is hoped she will be able to wean off of several of her current meds.
This weekend is Mother/Daughter camping with Girl Scouts. I have to go buy Nettie a sleeping bag!
Well, that's it for now!
Talk more once I have a computer at home.
Plus I have some great new pictures to put up.
Take Care and God Bless,
Renee
Friday, May 14, 2004 9:47 PM CDT
******Added New Photos!!!*******
Hi everyone!
I know it's been a while. Peter took me out today and again tonight for my birthday. It was nice to have a full day of adult conversation and to do "adult" things, like shop for yard and deck needs, go shoe shopping, etc. We went tonight and looked at Mother's rings, but I decided that $700 is just to much to waste on one person! That's more than $100 per person in our family we could use for new things or to update stuff in the house for ALL of us to benefit from. Soooo, we compromised and tomorrow the kids will give me (very convient) a nice ring I picked out from Bon Ton. LOL
The kids are doing quite well! There is a bit of a spring cold going through the house, but all in all they are healthy. Joshua is still working on getting his medicines up to levels that will start to affect his seizures. We have to wean him up very slowly because this particular medicine can cause a life threatening rash and some other yucky side effects if it is raised to quickly. We will start to wean down his Diamox on 6/7 if all goes well with the new med. We also found that his Topomax level was on the low side so he is now on an increased level of that as well. Hopefully we will see the benefits of these drugs, and not just sit and worry about the side effects.
We also had our endocrinologist appointment for Joshua this week. Overall we have decided to take a "wait and see" approach. We did discuss an option of a different drug that works in the same manner as the shot, but it is an inhaled nasal spray. It is not used frequently, but he may just be the type of kid where the benefits outweigh the risks of fluctuating levels (ie. if he has a cold and doesn't absorbe the same amounts daily). So that was nice to know that he has an alternative to look at instead of the monthly shot.
Tray has been sharpening his imagination skills to a new level!! Tonight he was running through the hall upstairs at 10:30 pm (after just watching the movie Peter Pan. . .can you tell where this is going???) trying to "FLY". According to Peter Pan, it is easy if you just try. Soooooo. . . in typical Tray fashion, he tried and he tried, and I am sure tomorrow, he will continue to try. He has his first T-ball game tomorrow as well. Hopefully we will have a beautiful day for it, I want to take some nice pictures of Marriela and all of her new teeth to share with you all!! I didn't realize how few pictures I had taken with her in them over Easter! :-(
Nettie is doing great! She is now getting physical therapy at home as well to facilitate our goal of walking independently. She is motivated and showed the PT just how strong she really is!! I am happy to be making these wonderful changes, since I almost gave up on this goal, she's 14 for crying out loud!!! LOL But better late than never, right??!!
It's hot as "_ell" right now and we had to go out and by two new airconditioners and still need a 4th and 5th. Our house is not conducive to good air flow so you really need individual AC's in each room. Ughh.
Marriela is doing very well and has recently made a nice jump in her eating!! She is trying many new foods and really likes to nibble on whatever we are having for dinner that night. As long as it is milk and dairy free, we try to give her as much as she will take. She is also now eating 1 full stage 3 fruit or veggie and a full stage 2 meal (both mixed with baby Oatmeal) twice a day now!!! That's ALOT for her! She is working on having some more breathing issues, but for now we're keeping them at bay, hopefully we can work through it this time and not need to go back on the "s" word (steroids).
Well, that's it for now!
Take Care and God Bless,
Renee
Wednesday, May 5, 2004 11:35 AM CDT
Hi everyone!!
Well, Joshua and I got back last night from our inpatient stay at Strong Memorial Hospital. He did a GREAT job handling the entire situation and I as very, very proud of him. He also did not disappoint the doctors and staff. He had many seizures that were recorded on both the eeg and the video monitor. I actually was suprised by the length of some of his seizures. It was an excellent study and I am so glad that we decided to do it. In the end, he was diagnosed with secondary generalized epilepsy. He has a great deal of abnormal activity occuring all the time, and then he has "seizures" that actually should on the eeg as "quite" times in his brain. The doctor explained that the area causing the more severe seizures is deeper then the eeg can read and when that area gets stimulated abnormally, the rest of his brain shuts up to listen. He is now starting a fourth drug called Lamictal with the goal of removing 2 of his current meds. He will stay on Topomax for now until we see what his levels are. They will be back by the end of the week. If they are low, we will increase the dose, if they are high, we may switch that drug as well.
If the meds do not work, then we will have to look further at other options. The Ketogenic diet is one option, but is very, very difficult for an 8 year old to commit to. Heck, it'll be very, very difficult for Peter and I to do, let alone the fights we'll have to have with Joshua. However, it has shown effectiveness in controlling seizures of Joshua's type. The other option is something called the Vagus Nerve Stimulator. It is a small magnetic coil that is wrapped around the vagus nerve in the left side of his neck. The coil is attached to a pace-maker type pack that tells it to emit a current of varing intensities and frequencies (depends on the patient). The coil is heated thus stimulating the brain so as to decrease the hyper-excitability that happens during seizures. He will still always have to be on medications, however, most people can come down on the doses or on the number of meds they need. In addition, you can actually STOP a seizure once it starts by waving a small magnetic "wand" over the battery pack. This in turn activites the coil in a more intense manner sending a more powerful signal to the brain in an effort to quell the uprising. It sounds very promising to us.
The last and most radical as well as the furthest from consideration is surgically removing the area of the brain causing the problems. However, the very tests that determine if this is feasible are extremely invasive and we are not anywhere near considering such radical treatment. But it is something that was explained to us.
Sooooo, for now we trudge along with the medication route, hoping to stumble upon the right mix to control his seizures. It is well documented that the type of epilepsy that Joshua has is not highly susceptible to medicaiton management, but he was also not suppose to survive his brain tumor. So hey, who's to say he won't suprise the medical community one more time!
As I was making final preparations for our departure Friday morning, I got a return phone call from Marriela's pulmonologist's office. I had called last Wednesday because Marriela still had not really come back down to her baseline with her respitory rate or her lung sounds. We were still giving her extra nebulizer treatments and she was still breathing faster than I liked. However, she was doing better by Thursday so I never followed up with the message that I had left. On Friday she woke up wheezy and crackly (in her lungs) so I shared that with the nurse on the phone. After conferring with her lung doctor, they wanted her seen ASAP by the pediatrician. So I had to secure transportation for Marriela and her nurse to the doctors and back. I was so stressed by time I left!! But in the end, her reactive airway disease is still out of control and she needed another 5 day dose of steroids. I pray this is the answer and she will get out of this funk, she is a NIGHTMARE on steriods. I felt soooo bad for Peter having to leave him alone with her while she is in her roid mood! But he did GREAT!!! She does sound better today than she did the day I left. Here's hoping that nothing more is needed.
Tray had a wonderful time with Daddy as did Annette. They were both big helpers and Annette was kind enough to point out to Daddy, which things he was not good at, and which things he was. She helped to care for Marriela when Peter showered and Tray helped take care of his stuff around the house.
My family is amazing and they all pulled together to handle this stressful time. I am home now and looking forward to my Garage Sale this weekend!! I am PURGING my junk!!
With love,
Renee
Sunday, April 25, 2004 9:40 PM CDT
Hello everyone!!
***** NEW UPDATE*****
Today we went to church where Marriela had a wonderful time showing off her walking skills for all to ohh and ahhh over. LOL Yesterday was a wonderful day, both in weather and company. My mom and sister, along with my sister's boyfriend and her son, Justin came over for a cookout. My sister's boyfriend is a WONDERFUL cook and we had a nice meal. Nettie also had her "boyfriend" over and they spent some nice time together listening to music and then we took them for a walk around the block after eating.
I have been working on preparing Joshua for his inpatient stay. He doesn't really seem to understand the whole situation, he is just worried about wether he will need a shot or not. Granted, this is a valid concern. . . however, no matter how much I explain to him about what will happen, he just looks at me and says, "Will I need a shot???" I think I'll try a different technique another day. We go in on Friday and will be there 5 - 10 days. I'm getting a bit anxious about the stay because I have never left the baby alone before! She's teething quite a bit and she's not sleeping well at all, so I am afraid Peter will be up all night with her and then have to go to work all day. I guess we'll just have to wait and see.
Nettie isn't feeling well today. We let her stay home from church while we went. She just watched tv in our bed while we were gone. She is very achey and has a bad headache. She crawled into our room last night at 2:00am asking for Motrin because she was so achy.
Tray and Joshua are both loving the good weather and have been spending a lot of time outside. It tires Joshua out SO MUCH but he seems to really be enjoying himself.
Marriela is behind me staring at the fire I started in the fireplace. I haven't started one all winter because I felt she was too little to be trusted. But today, since I'm sitting right here, I thought I would try it and see how she does.
Well, here comes my mom to visit before heading back home.
I'll write before I leave for the hospital!
Take Care and God Bless,
Renee
Hello everyone!
I don't know if I have said this or not, but HAPPY EASTER! I was gently reminded today by a good family friend the Bearmonkey, that I hadn't updated in while. So here goes.
Peter and I just got home from a nice evening out. We had a dinner and saw a movie. The movie was called. . . dang, I can't remember the name for my life. . . which is ironic since the movie is about memory losses!! LOL Anyways, it's the one with Jim Carry and the girl from Titanic (again, forgotten her name). It was a good movie, very unique and actually very thought provoking. I really like movies that make you have to follow through and think throughout the whole thing. I recommend it highly.
The kids are doing well. Joshua and Marriela just saw the orthopedic surgeon who had Joshua's feet x-rayed again. He still sees the spot on the toe, but assures me that it is PERFECTLY normal variations, and made me promise to not worry about it at all. I assured him that I didn't have enough worry in my to waste it on a stupid spot on an x-ray on one toe. So we'll repeat the x-ray in 4 months (just so I won't worry. . .) and then we'll be done with the spot.
Nettie and Marriela also saw the rehab doctor. Marriela's braces are now only as high as her ankles and hopefully with her continued success with walking, she won't need them at all in the near future! Nettie is doing great and we now have a new goal. . . drum roll please. . . TO WALK ALL BY HERSELF!! She has come up with this goal herself, so we are going to push her until she says enough, or, she walks. We have a new program to use on her legs with the electrical stimulation machine to strengthen her hip and booty muscles, some new excercises to do, to do the same, and some new skills to practice to work towards walking. We used all of the recent skills Marriela has learned as examples of what she needs to do and it was so much easier to talk about since she had just watched Marriela do ALL of the skills we were talking about!!! I am soooo proud of her, and even if she doesn't fully acheive her goal, she set it herself and has made a huge commitment to at least trying it. YEAH for Annette!!
Marriela is once again on steriods for another bout of severe chest congestion and wheezing. Her chest x-ray was negative for pneumonia, but it was positive for severe reactive airway disease (this is controlled sometimes, and other times it gets out of line). So back on the steriods and increased nebulizers. She is doing much better now. She is now walking more than she is crawling and it is such a joy to watch her learn more and more skills almost daily. We still have a long way to go in the eating department, but we're working on it.
Tray decided yesterday he wanted to be a beautiful rainbow. I explained to him that he is beautiful, but he is a beautiful little boy that I love very much. Not good enough apparently. He wants to be a rainbow. But wait, it gets better, at least it is not the elephant he wanted to be last week. He has recently made several references to his biological mother and her lack of love for him. It is so different going through the adoption experience with Trayvon, as he is so much more developmentally advanced than Annette was at the same age. She was with us for much longer before she started to question the adoption experience and her mothers whereabouts. Tray is only 5 and he already has some questions and confusion about the adoption experience. We are trying to make sure we make him feel as loved, accepted and special as we can so he doesn't formulate negative concepts about himself or his bio family. I don't have to like them, but he does. Hopefully we will handle this well and he'll be able to love being a part of our family and someday be happy with his mom's decision. Oh yeah, it's also ant season now, and that means I have to follow Tray around each time he comes in from outdoors. He is DETERMINED to have a pet and during the warm months, any insect, especially the ants, become his new little "pets". I have to keep sending him outside with his new "buddy" (which by the way has usually suffered permanent, and irreversible neurological damage during the "aquiring" period of pethood, and is nothing more than a twitching mass of legs and antennas). Peter and I are thinking it may be better to relent and let him have the fish so I don't have to flush anymore paralyzed ants down the toilet. Hmmmmm.
Joshua is doing well. We will be very happy to finally have this EEG done and get the information it should provide. He is still having seizures as well as definate periods of confusion. I don't like this new drug and really want to try him on something else. Here's hoping that we will find the right drug combo to have minimal side effects but with complete or near complete seizure control. Other than that, he is doing GREAT!
Well, that it's for now in the Curkendall household. I am sure something new and exciting will happen soon, so unitl then... Adios!
Take Care and God Bless,
Renee
Friday, April 9, 2004 2:12 PM CDT
***********Added New Photos to Picture Page*********
Hi everyone!!
HAPPY EASTER!!! Easter this year snuck up on me. I was looking at the school calander and I was absolutely shocked to see that Easter was this WEEKEND!! I knew the kids had vacation, but had a mind blank on the whole Easter thing. Sigh. . . oh well, ran out and finished the shopping necessary to facilitate the Easter Bunny's job *wink*, on Wednesday with Marriela.
Today Joshua had his appointment with the KNOT clinic. Again, we have to wait for more information to filter in. He is definately demonstrating several "soft" signs of puberty and a couple of "hard" signs as well. However, his lab work was not that elevated therefore he is, again, in the "we don't know what to do with him catagory". She did however, go over many of the pros and cons of intervening with the monthly injection of Lupron, if in fact he is in puberty. Apparently, this shot has to be given EVERY 28 days (not 27 or 29, but 28!!) at the pediatrician's office, until he reaches the age of 13-13.5 years old. That's 5 YEARS OF SHOTS!! There are other issues as well. Today his growth hormone level was right in the normal range, however, it is probably falsely elevated due to the puberty and once we stop the puberty we will stop his production of growth hormone. Therefore, he will have to start the nightly shots of growth hormone as well and he has to do that until his bone plates fuse at around age 16 or so. So, that's 8 YEARS OF NIGHTLY SHOTS!!! Another issue is. . . the Lupron can cause Liver issues. If we have to stop the shots for some reason (either Joshua just says "enough is enough" or he has liver toxicity from it) then he will experience an accelerated puberty. In other words, if we have to stop them at 10 then, within just a few months, he will have facial hair, his voice will change and all of the other pubertal issues will take place. This would not be a good thing at 10 years old to happen to a little boy. So we feel better waiting until we have ALL of the information we need to decide of the shots are the right choice to make. I was just hoping that it would be an easy fix for his seizure situation, but now I see that nothing is easy for Joshua. Other than that, all is well with the Joshster.
Marriela was at the doctors yesterday because she was having a hard time with her breathing and with wheezing. She has been very fussy and needing extra nebulizer treatments and refuses to eat other than a couple of bottles a day. She is also sleeping A LOT. However, the doctor said she was fine (I don't think so) and to just let her finish getting better on her own. I already let her own pediatrician know that she isn't getting better on her own and that I will probably be in on Monday. Hopefully, she'll do ok over Easter.
Nettie is doing great. She had an awesome report card! I am very, very proud of her!! I turned in the camp applications for her and Joshua today and faxed the pediatrician Joshua's physical.
Tray is also doing well. He did wake up very puffy today, but the reason was clearly evident last night. . . I made spaghetti for the family, Tray LOVES this dinner. He had a HUGE plate of pasta and I sprinkled Parmasean cheese on it for him and he loved it. Later, after dinner and Tray asking for another dish full of spaghetti, I went to put away the garlic salt I used to make the Garlic bread with. The bottle was empty. There was AT LEAST 1/2 a bottle of garlic salt in that container and it was ALL gone. I was looking all over for where it must have been spilled, but couldn't find any evidence of the such. Then I looked at Tray, with his face plastered in sauce and his plate LICKED clean and asked him if he had used this bottle (holding up the empty container). He replied "yes, but I didn't mean too." He ATE ALL OF THAT SPAGEHETTI COATED IN GARLIC SALT!!!! DISGUSTING!! Needless to say, he woke up puffier than a blow fish this morning, but as the day has wore on, he is gradually getting back down to size. LOL Gotta love him!
Well, that's it for now!
Take Care and God Bless,
Renee
Friday, April 2, 2004 4:12 PM CST
Well, I'm on my own for the weekend. I "allowed" Peter to go with his brothers to Florida Friday through Monday. Hmmmm. . .what should I ask for as payback for my kindness??LOL Nettie is in the other room with the boys watching The Cat in The Hat. She is REALLY enjoying it. Nettie is wonderful in that she always lets her pleasure in something translate into this amazing-straight-from-the-belly laugh. She is always the loudest one in the movie theater and I LOVE it!! Joshua also really just lets his laughter go but not in the same way as Nettie. It is just awesome to hear her enjoying things so purely.
Annette had a wonderful birthday party. She watched the movie "Honey" with her two best girlfriends and her "boyfriend". They all enjoyed the movie alot. Then the girls had a sleepover which Nettie spent most of the time laughing her head off. She was just so happy to have some good friends over, she was laughing at everything! LOL It is mindblowing that she is 14 already. She has been with Peter and I for more than 10 years now. She has overcome soooo much in her lifetime and has no comprehension of the amazing feats she has accomplished. She didn't actually even begin to "become" the girl most people know today, until she was almost 9 years old. Before that she didn't eat, she wasn't toilet trained yet, she was VERY difficult to understand, she really didn't "walk" yet and she was constantly in and out of the hospital. She has made HUGE strides since she turned 8 or so and most people that know her today, would never think she was as delayed or as sick as she was in the past. I remember though, and it still ceases to amaze me at the profound differences in her now. She is now a vibrant, beautiful young teen with her eye on the future (she wants to go to college). She is not aware for the most part of her academic challanges nor does she herself as all that different from her peers. She does comment regularly that she wants to walk by herself someday. She frequently tells me she can't wait to drive (it will be a heartbreaking day when I have to let her down on that goal in life, but she will never have the physical or cognitive skills needed to operate a motor vehicle). But she WILL be able to travel by public transportation independently or by cab or by any other means she desires, just not driving. She is an amazing child and one that I am proud to call my own. Happy Birthday Baby!!
Joshua's school nurse called me today. Joshua is still struggling a great deal with both seizures as well as side effects from the new med. He is very distractible, virturally impossible to engage in an activity for more than a few seconds at a time. He has had many episodes of confusion and word loss, sometimes scaring him. He had a run of seizures at the dinner table last night and he needed "some love" to help him cope with the experience. All of this is making it very hard for the school staff to know how to help him the best. His teacher, a wonderful caring young woman, was in the nurses office upset to almost tears because of Joshua's change. The school nurse stated that the school's heart is breaking for Joshua and EVERYONE wants to know what to do to help him the most. I explained to her, that this is not something that we will be able to "just fix". There is no concrete answers and if this is in fact the result of radiation damage, then we need to prepare ourselves for ongoing issues and adapt as best as we can, while helping Joshua transition to his new learning styles and needs. Peter and I have also shed many tears over the damage that our beautiful son has had to endure in order to assure that the awful cancer doesn't return. We have had to learn to accept what can not be changed and pray for the knowledge to change what can.
Tray, believe it or not, still has that loose tooth dangling from his mouth!!! He won't let me pull it, but it has migrated almost an inch to the front of his mouth so it looks like a groteques peice of food hanging from his lip! LOL I keep giving him apples, and tortillas hoping that the blessed thing will jump out and be done with it! He and I continue with our pact, "no crying, no yelling". He is doing great and I have been much more relaxed lately. His crying was getting to me way more than I thought it was. He has gotten several great reports from school and now the question has been posed as to wether or not retaining him is the right idea. We will wait it out a bit longer and they are going to focus on his math skills to see if they will improve as quickly as his reading skills have. He is now reading more than several "regular" ed kids and he has a better grasp on phonics than more than 50f the class!! So it just may be that first grade is in his future after all. :-)
Marriela continues to amaze us at the rapidity of her skill development. She is now walking (5-6 steps at a time) WITHOUT her braces!!! She just saw the rehab doctor who felt that she would only need them another 6 months or so and then we can throw them away! Her nose and lungs have been great since starting her newest antibiotic and nasal spray. Plus with the nursing now, she is exposed to a lot less and it shows so clearly in how healthy she stays when she doesn't go out.
I now am the proud owner of a '98 Pontiac Montana which I am completely in love with. Peter said 2 weeks ago, that he would buy me a new (newer) car if I wanted one. Well, I have always wanted a Montana and now I have one! It is all white and looks amazing. I am going to ask to have the inside detailed for my birthday. LOL
Well, the movie is almost over and the kids are getting antsy, gotta go.
Take Care and God Bless,
Renee
Thursday, March 25, 2004 5:22 PM CST
Hi everyone!
Wow! I am so relieved. The oncologist just called and Joshua's MRI today was completely unchanged! In other words, he is still cancer free. I had horrible images of the call coming from the doctor saying that there is new tumor growth. I looked at the MRI myself and was positive I saw some new "enhancement" from the contrast. I am so very, very happy that I did NOT read it correctly. We also drew labs today while he was sleeping for the MRI. The labs will tell us if he is in Precocious Puberty. If he is, the doctor already stated that we will start the monthly shots to stop it right away.
A clean scan also means that we can progress with our search for adequate seizure control without having to worry as to wether or not this is caused by a relapse. I am soooooooooooo relieved. His next scan will be in one year. YEAH!
Marriela is doing well and she continues to take steps independently if set up and "bribed" into it. It will only be a matter of time before she realizes it is faster to walk than to crawl (well, actually, in her case, that probably won't be true, she's pretty dang fast on all fours). LOL She has also gained 2 pounds and is eating very well the past 3 days. We are upto 3 bottles and 2 actual "meals" of fruit or veggies with baby cereal. She actually had a whole bowl of grits (the instant packs) yesterday morning! Nettie and I were joking that she'll need weight watchers also when she hits 2. LOL Just kidding. She has a stuffy nose and infrequent bouts of wheezing that are responding very well to the extra nebulizer treatments. Hopefully with spring on its way here, she'll finally catch a break from all of this goop.
Tray is doing well also. He and I made a deal today. He won't cry and I won't yell. Now, let me explain. I have never dealt well with kids that cry over everything. (and I mean everything) Tray has a knack for making EVERYTHING into a major emotional disaster for himself, resulting a buckets and buckets of tears. I have been working with him for a very long time on how to use words to express himself so we know what is wrong and can help him fix the problem. Today he stated that I yell at him to much (I do find that I tell him to stop crying all the time and he must see this as yelling at him a lot, for which I was devastated to hear). So we made a deal, he doesn't cry unless his feelings are really hurt or he has hurt himself physically, and I will not yell. We shook on it, and it has been a tear free, yell free day for the both of us! :-) He's about to lose another tooth, the dang thing is hanging on for dear life and he doesn't want any help in getting it out. We also picked him up a baseball glove today. He is itching for baseball to start. He asked to sleep in his shoes tonight in case he wanted to practice. I relpied that we don't wear shoes in the middle of the night, it would be uncomfortable. He asked "well, can I wear them on the side of the night." Hmmmm, how does one respond. The shoes will be on in bed as he sleeps through the side of the night. LOL
Nettie is moving right along. She is having her 14th birthday party on Saturday. She and a couple of school friends (including her "boyfriend") will be over to watch a movie and have some pizza and cake. Her one friend will then sleep over. On Sunday we will have the family party. In school on Monday, she is going to have a pizza party for the class. It was sad to think that this will be her last "in school" party, as she will be in middle school next year. Sigh........
We picked up the van that had been hit, and it looks wonderful!! You would never know it was hit. Kudos to the body shop guy.
Well, that's it for now.
Take Care and God Bless,
Renee
Monday, March 22, 2004 6:56 PM CST
Hi everyone,
(Jeff, the rabbit did NOT die. I yelled at him for saying that. I repeat, the rabbit is NOT gone.)
My husband used the "rabbit died" excuse for not calling back a friend. He did confess immediately after, but none-the-less, I scolded him for even making such a statement and that he better not have jinxed either of my lagamorphs!
Ok,
Well things continue to move along here in Syracuse. It has snowed for the past 3 days (not a lot, but enough to tick me off) and today it was very cold. I am SOOOO ready for the spring to arrive.
Ok, onto the kids, I know that's the reason you check in here (though sometimes the weather can be a bit more exciting LOL).
Joshua, still having seizures, but not as many. The medicine is working, but not all the way and it is also causing side effects. He gets very confused at times and his language organization skills at times are very poor. For example, sometimes when trying to tell a story, he can't tell the story in order, or he can't find the words he needs to start or finish sentences, so he stammers through the same sentence multiple times. After a while he is able to figure it out or we help him figure a different method of telling us the story using different words, or filling some details in for him. He doesn't seem to be bothered by it at all, which is truly a God send. It would be so much more difficult for us, if he was upset by this newest challange he has. We go tomorrow for his history and physical so he can have general anesthesia for his MRI on Thursday.
Side note: Tray and Joshua are playing behind me and Trayvon just told Joshua that he is God and Joshua is Jesus. Joshua is laying on the floor playing "baby Jesus" and Tray is being "daddy" God and gave him a bottle. LOLOLOLOL I have NO IDEA where this came from.
Ok, back on topic. Joshua is scheduled for his long term inpatient EEG on April 30th. Believe it or not, this is an emergency admission! They only have 2 rooms and the kids in before him are also in rough shape, so she got him on the schedule as soon as she possibly could. He will be in for 5 - 10 days, depending on how much info they get and if they decide to start messing with meds to see if they can get a better hold on his seizure pattern. He has a full appointment with the endocrine nurse practitioner at the long term care clinic on the 9th of April. Other than that, he's doing great.
Tray is doing great as well. We made the decision to hold him back in kindergarten another year. He did not like it when I told him this and now he seems to be in denial about the whole thing. But we all feel it's the best thing for him. He is Soooo young (he was the very last kindergartener to turn 5 this year), the kids started turn 6 starting Dec. 16th. In addition, he is still a ways behind the rest of the class. So we feel one more year of maturing and skill development will be great for him and hopefully avoid the need for a retention further up the academic ladder. Sounds good anyways. LOL
Nettie is going to see the rehab doc and the hospital physical therapist to discuss her "work out" program. She is very excited about working out, because she wants to wear a bikini. I told her the chances of a bikini were slim to none, not because of her shape, but because no 14 year old daughter of mine was going to wear a bikini! :-)
She wasn't happy.
Marriela is doing great as well. She did have pneumonia again not to long ago and goes for her follow-up appointment tomorrow. She has a chronically runny nose but seems well other than that. She took 5 steps ALL BY HERSELF TODAY!!! She was made as a caged animal, but she did it!!! Pretty soon she is going to associate the face of her Physical Therapist with the word sadist and she's going to learn to walk and run just to get away from her! But I LOVE her therapist because she gets Marriela to do SOO much. She has also been standing all by herself all weekend if you get her stable. She doesn't even realize that you have let go of her anymore! It won't be long before she takes off running. . . or at least a slow trot. LOL
We picked the big beast of a van back up today and you'd never know it had been hit!!! He did a fantastic job on it. So we are back upto three cars. We are going to trade in our junky winter rat for a newer (note I did not say new. With my track record and cars, a new car would never be worth the expense. LOL) Montana so that we have a smaller van to park at the hospital when I need to take Nettie or the other kids (the big van can't park in the garage and lot spaces are very limited at our hospital).
Peter and I are both doing fine, in case you were wondering. :-)
Well, that's it! Take Care and God Bless,
Renee
Saturday, March 13, 2004 10:51 AM CST
Hi there!!
Well, so much for the nice spring weather. It's been flurrying here for the past 2 days, and yesterday was FREEZING!! It was sooo nice to see the grass and now it's all buried again. Oh well, spring will be here soon enough.
Marriela had her first day with her nurse yesterday. It was so nice to take Trayvon to his doctor's appointment at the hospital and not have to worry about her being exposed to all of those germs. Not to mention that it was SO COLD outside it would have not been good for her lungs. After Tray's appointment I had time to go to the pharmacy, the grocery store, the hardware store, pick up some Girl Scout cookies and even eat lunch (INSIDE) by myself at the Taco Bell (I know, big spender aren't I LOL). I came home and Marriela was sleeping peacefully in her crib and the nurse reported that she had a great day. Her pneumonia has definately improved and she is back to only 2 times a day nebulizer treatments (these are her standard treatments that she does daily, whether she is sick or not). Hopefully with Spring trying to peek it's head out here, she'll have an easier time staying healthy. We're working hard to get some meat on her bones (though to see her you wouldn't think she was underweight LOL).
Joshua is doing ok. I spoke with the neurologist yesterday. He feels that since we are having a difficult time differentiating the difference between the side effects of the meds and actual seizures, we need to take a different route. He is going to admit him for the 5 day inpaitent countinous, video EEG. We are now in the process of working out how we will care for Marriela in my abscence. It's possible that Peter will have to go with him initially and I will switch mid-week so we only have to find a babysitter for 2 or 3 days as oppose to all 5. We'll see. I am actually happy we are doing this, as I feel this will definately help determine if the new meds are working. Today has been a good day. . . which means Peter and I haven't "seen" any seizures. But we also aren't staring at him 24/7. His MRI is scheduled for the 25th as well. I will feel SOOOOOO much better once this is done and we hear Negative for the 5th year in a row. :-) I have also come up with another theory for the suddeness of the increased seizure activity. I hypothize that Joshua is going through Precocious Puberty (premature puberty due to the radition damaging his putitary gland). Many children with great seizure control suddenly have a temporary increase in seizure activity when they hit puberty. But Joshu is not due to hit puberty until he is at least 14 years old. So it stands to reason that if we stop the puberty we get better control of the seizures. I hope that makes sense to all of you out there. LOL Peter and I (cover your eyes if your female here) checked his testicle size today and there is definately an increase in size there, pair that with his body odor that he has had for the past year, you've got Precocious Puberty. I still have to have this confirmed by the Nurse Practitioner that cares for the kids in the KNOT clinic. But I think that they will agree to start the monthly shots that stop puberty and hopefully we will get better control of his seizures as an indirect consequence. Anyways, he can't start puberty this early anyways, he would not reach his full adult height and would be pre-disposed to a host of other medical issues if he were. So that's it for Joshua.
Annette contiues to do great!! She is using her canes at home and is doing great with them. I am very proud of her. She recently learned that her "boyfriend" will be going to a different Middle School than she, and she was very sad to hear this news. But I assured her there are many more "fish in the sea" and at only 13 (almost 14, only 2 weeks to go!) she has PLENTY of time to settle upon a boyfriend. She simply announced, "Parent's just don't get anything!!" and stormed to her room. I thought it was awesome that she had such a developmentally appropriate reaction to my advice (granted, I do know something) but didn't let on to her that I was happy inside. LOL
Tray is still the spit fire of the family. He's my perpetual "beefer". In our house we say "beefing" as a synomyn for "complaining". Tray can find fault with God himself, bless his little heart. His obsession with food likewise continues. He comes home from school "starving as a pig" each day, or so he announces daily upon entering the house. After snack he hounds me for the next hour or so, demanding to know what I'm making HIM for dinner and why aren't I cooking yet! I feel sorry for the girl he marrys! She better be a strong willed and determined young lady herself. LOL I now tell him that "I will not talk to you about dinner until dinner arrives upon the table in front of you, unless of course, you choose to cook it." This has been working so far to quell most of the daily inquizitions. HEHEHEHE. Tray did have to go to the ENT yesterday to have his ear tubes checked. Normally, this is a 4 or 5 person adventure, as he HATES to have his ears looked at. He's perfectly content to have open heart surgery, but look in his ears. . . the injustice of it all! I had a nice talk with him upon our arrival, reminding him that "big" boys who can lose teeth, jump on one foot, snap their fingers and grow taller each month (wasn't that a good one!), can sit still long enough to have their ears checked without having to be wrapped in a sheet and held down by 4 people. He tenatively agreed and amazingly... he did it!!! Albeit with a few tears, but he stayed still and we were in and out in less than 10 minutes. His tubes are on the way out but we are going to wait and see if they need to be replaced. I was so very, very, very proud of him and shared my happiness with him over a very large chocolate chip cookie. :-)
We anxiously await the return of our van. We are having it repaired as oppose to buying a new one. It was the much cheaper and far more logical solution to our vehciular troubles. I was hoping today, but Alas, it won't be until early next week.
Tuesday, March 9, 2004 8:34 AM CST
Oh my, where do I start?? LOL
Joshua, still having seizures. They seemed like they were getting further apart, but then he had to stay home from school last Thursday because he had 13 before his bus even arrived. After a "run" of 6 - 7 seizures back to back, he was unable to write and couldn't remember how to make numbers. That passed within an hour or so, but it's still scary for him. Yesterday he had one where he couldn't talk and was very nervous. You know when he's having some or when he's just had one because he has to be very close to you and needs lots of hugs. He also gets very smiley. I am meeting with his teacher today to discuss the impact these seizures are having on his schooling. We are still increasing the Topomax with the hopes that eventually we will find a dose that will work, but I think the doctor will be adding Depakote to the mix in the next week or so as well. It's all very frustrating. We still don't have a date for his MRI either so I have to call on that today as well.
Marriela was back at the doctor yesterday. Last Tuesday she went to the pulmonologist and he started her on steriods to try and break the cycle of congestion and wheezing. It worked for the first day or two, but over the weekend she got a lot worse so I took her in yesterday for some antibiotics as well. The doctor said she had bilateral lower lobe pneumonias. She's feeling fine with the exception of a persistant cough and lots of rattles in her chest. She has also lost 5 ozs. The doctor is going to ask the nutrionist if there is a milk-free product that is as calorie dense as Pediasure is. Right now she is on Nutrimagen, but I can only get 3 bottles a day in her and she is NOT a big food eater. So we'll have to see what else is on the market that will fatten her up.
Tray is doing great. He had a note sent home yesterday that said he was WONDERFUL and had fantastic manners all day. What a wonderful present for Daddy's birthday!!! Trayvon was also very happy when mommy came home yesterday with a prescription from the doctor for the pill form of Zantac! He's been taking the liquid form and it is VILE stuff!! Poor thing's face gets all scrunched up and he chugs about a gallon of water afterwards. So he's much happier now. He's on all pills (13 total in the am, 3 in the afternoon and 5 at night).
Nettie is also doing very well. We had a great time on our Girl's Weekend out at my mom's. Nettie did some birthday shopping and picked out some very, very nice outfits. She had her IVIG on Thursday and it went uneventful. I had her IEP conference yesterday and met with her new special ed teacher for Middle school. She seemed very nice and really was impressed with Nettie when she meet her. The meeting was a good one.
I was suppose to also meet on the boys for their IEP conferences as well. However the school district is tryting to make some MAJOR changes in their programming and I am being asked to make some major educational decisions regarding my sons that I do not feel that I am informed enough about to do so without serious reprecusions.
I hope to get a meeting with the director of special education in the next week or so, so I can get some information directly.
Well, that's it for now!!
Take Care and God Bless,
Renee
Tuesday, March 2, 2004 8:28 AM CST
It's been a while since the last update. Several things have happened.
1. Annette and her friends typed in her name on Google while playing on the computer at school, and up popped this page. Of course, at the top I had listed Annette's various medical issues. This was a major problem as the rest of the class now knows her status. I was devestated that something I have always seen as such a positive, has made life difficult for my baby. I had to share with her the jist of the meaning of her diagnosis and asked that she NOT discuss it with any friends at school. Hopefully with time and the removal of said information from this page, things will blow over and not be a continuing source of trouble.
2. Nettie has had her first "date" with a "friend" from school. He joined us for the Boy Scout Pinewood Derby on Sunday afternoon and then we all went out to Pizza Hut afterwards. They were SOOOO cute!!! Apparently when I stepped out of the car to run into a store for a moment, Nettie made her "friend" hold her hand. When Ginger, Nettie's nurse asked why, Nettie's "friend" said "Nettie, wanted me to feel all of the love she has, and boyfriends and girlfriends are suppose to hold hands." HOW CUTE IS THAT!!!! They have already made more plans for more "dates" in the future.
3. Joshua raced his car at the Pinewood Derby. His car did well, but not as well as last year. He was a wonderful sport though and cheered his den mate, Justin along the whole way!! Justin did come in third in their class and Joshua was the first to congratualate him. We were VERY proud of him!!!!!! Way to go Justin! Joshua has also had a nice decrease in his seizure activity since we expidited the weaning of his old medication and increased his new one last Friday. Apparently the old medicine was actually CAUSING more seizures because it wasn't designed for the type of seizures he is now having. He's still having some, but Peter and I both agree they are fewer and furthur between. Hopefully, once his old medication is completely removed (this Friday) the Topomax will do its job and we'll see few to no seizures. SAY A PRAYER!!
4. Marriela is still having a very hard time with the cold that Joshua and Tray felt so compelled to share with her. She is off to the pulmonologist in just a few moments here. She has some serious wheezing, crackles and such going on in her little lungs. Hopefully a bit of antibiotic as well as some steriods will clear the whole thing right up.
5. Tray is doing very well. We are signing him up for Little League this Wednesday. He is sooooo looking forward to playing baseball. Joshua on the other hand has declined to play this year. So we'll all be there to cheer on Tray as he makes those homeruns since we won't have to worry about being at two games at the same time!!! He has one more loose tooth and asked if he could have some hard candy this morning so that he could "knock out his teeth". I declined his request as any responsible parent would. . .oh wait, no I didn't! I think I forgot to tell him no!! LOL Just kidding. I told him I'd buy him some taffy, that'd work better and hurt less. LOL
6. We are still van hunting. We are now going to see if we can get some of the damage repaired to our old van instead of buying new. We had the garage assure us that the overall frame and integrity of the van was still very much stable and sound. The said absolutely. So we took it up to another garage to see what miracles they can accomplish. Last night a large sheet of ice fell from the roof and landed next to the Buick (our "spare" car) and dented in the back right side. The ice chunks were HUGE and would have killed someone one if they had been there!!! We have another sheet just hanging at the front of the house, so we can't move the cars up and I'm working on getting someone out here to take care of it ASAP.
Well, gotta get Marriela off to the doctors.
Talk more soon.
Renee
Saturday, February 21, 2004 8:27 AM CST
Saturday, February 21, 2004
*********Another Mini-UPDATE*************
Well, I finally heard back from the Neurologist yesterday afternoon. Actually, I was so mad that I MADE the office page him since he was on service. They said that they NEVER do that, but I wasn’t about to take “no” for an answer! He called me right back, had NO idea who Joshua was until I reviewed his entire history to him and then he said he’d call me back as soon as he got over to the clinic to review the EEG results (I already knew the report was in his chart since the secretary accidentally told me, oops). When he called back I was floored with the results, and I think he was surprised as well. Joshua is pretty much seizing all the time. His EEG was “profoundly abnormal” with generalized (meaning whole brain) activity the majority of the time. Sometimes the seizures are symmetrical, in that both sides of the brain had “equal” activity, and other times it was asymmetrical, in that the activity would start on one side of the brain and then move to the other side. But the shear amount of activity was very upsetting. So now we are weaning him off of the Trileptal and started him on a new drug called Topamax. We have to wean up the Tompamax as we work on getting him off of the Trileptal. So for the next month or so he will be on 4 seizure drugs. Topomax is a very scary drug to read about on the internet, so we decided to stop reading and to just learn what to watch for and then monitor him closely, say a prayer that this is the answer and that the seizures will get under control. I did get up the nerve to finally ask if we should be concerned that this could mean the return of his tumor. The neurologist strongly felt “no”, that this activity is NOT tumor related. Well, we’ll still be moving that MRI up irregardless of his reassurances. I don’t think any doctor would fault me on that one. His regularly scheduled scan wasn’t until May, but I’m going to move it up to March or early April.
I had also mentioned before that Joshua was sleeping a lot the day before, well yesterday he woke up with the mother of all colds! He’s been going through a box of tissues about every 2 hours and his nose is just raw! I’ve been using Benedryl (the only med he can have with his seizure meds) in the afternoon and evenings to try and help slow down the mucous production (sorry so gross! LOL).
Well, that’s it for now.
Take Care and God Bless,
Renee
Monday, February 16, 2004 2:58 PM CST
*******UPDATE - 2/19/04*******
Well, Nettie had her appointment and all is well in heart land. She has a very mild thickening of the left ventricular wall (don't know what that means, but hey, they tell me it's nothing to worry about)but is otherwise completely normal. Her EKG likewise was normal so no more cardiology visits unless there is a problem.
We did have some excitment here yesterday morning. At 7:30 am there was a loud "crash" outside our house, I jumped out of bed to find a grey minivan smashed into the left corner of our new conversion van. Peter had just moved it out onto the side of the road (legally parked) so he could get out the car to go to work. Apparently the lady hadn't completely defrosted her windshield and when she hit the defrost button the inside of the car completely fogged over, she was trying to pull over, but couldn't see and smashed right into the van. She only lives 2 blocks up the road from us. The van is totalled, she messed up the back doors and wiped out the entire back left side of the van. The garage said that the parts to replace everything are soooo expensive that it isn't worth the effort to try and repair it. I am sooo saddened. This is our third van in 3 years. I totalled our other "wheelchair" van when I was in a three car accident 3 years ago. Then we bought a Ford Windstar with the money from that insurance check and that turned out to be a major lemon. We sunk money after money into it and after the third engine we decided it wasn't worth effort to try and save it (actually we gave it to Peter's dad because he really wanted it. He put in a new engine for $1,400, but now he is sick of the van as well. LOL). Now we have to get another van and use the money to pay off the loan we took out to get this one and then take out another loan to buy a new one again. I am sick of CARS!!! We have a VERY ugly loaner for now.
Joshua slept alot today, very strange for him. Hopefully he's not coming down with something. Nettie saw the pulmonologist today and she is doing great! They lowered her Flovent to only one puff twice a day instead of 2 puffs. Tray goes to the eye doctor next week to see how the patching is working. Hopefully there will be improvements in that area as well.
Marriela's nursing should be starting next week. . . at least that is what they are telling me. She got her RSV shot today with an audience of three siblings. She cried momentarily and then stopped and went right down for a nap. Her feeding continues to do very well and I am slowly increasing her solids again and varying the palate. She was only 5 oz heavier this month than last so she really hasn't made any progress in the weight catagory. Her pediatrician did call to say that the upper GI did reveal that she was very delayed in emptying her belly and intestines of her food, this may explain the vomitting. So she did start on the Reglan which helps to speed up peristolisis (or the movement of the intestinal tract) so she clears her food faster. She has been great otherwise. (see her new braces in the picture, aren't they so cute!)
On a differnt note, I ordered Nettie some new forearm crutches today as well as a new walker for Marriela. We can't put them through the insurance company because then they will say that they are "walkers" and won't pay for any wheelchairs or strollers. We don't know yet how well Marriela is going to be able to walk long distances and such so she may need a special stroller. If we ask them to pay for her walker, they will say she doesn't need the stroller ($900 - $1,500) and if they pay for crutches for Nettie they will say she doesn't need a wheelchair ($3,000 - $5,000) so we pay for the less expensive items. I got a great deal on both things off of the internet!!! The walker was only $300 and the canes $100, not to bad if you ask me.
Well, that's it in Curkendall land!
Take Care and God Bless,
Renee
***********2/16/04***********
Hi everyone,
Well, not so far out from the last update this time. LOL We made our trip to Rochester and Joshua managed to stay awake from 3:30 am until the moment she started to put the wires on his head. He was asleep for most of the prep time and then did wake up breifly for her and followed her commands as she did a strob light test and a couple of other things. Then he was OUT! He slept hard until she woke him up about 45 minutes later. He was soooo overtired by that point that he was wired to the hilt for the rest of the day. Marriela and I went back to the Ronald McDonald house and we all had lunch and then we went upstairs to take a short nap (didn't want to drive with no sleep). Joshua had made friends with a wonderful family of kids (there were 6 of them, one was being treated for a brain tumor)and their mother agreed to keep her eye on Joshua as he watched a movie with them. After I woke up and packed up the room, woke up Marriela and transported everything to the lobby, I checked on Joshua (I thought they had just started the movie and it was only an hour and a half later), I found him sitting just as good as could be with the family enjoying a wonderful homemade Mexican lunch. This family was such a help!!! I still don't have any results from the EEG yet, nor have I heard back from the neurologist regarding increasing his meds since we had the levels drawn. It is SOOOOOOOO frustrating waiting on everyone else for answers!!! Just before we left for home, Joshua had his biggest seizure yet. He was sitting in a chair and had been really acting up a bit. Suddenly his eye rolled up and his arm extended out and his hand began to twitch (he was sitting the whole time), it lasted about 30 seconds and he was VERY disoriented afterwards. In the car he only lasted 10 minutes before he fell sound asleep for the better part of the trip home. I am anxious to see what the EEG showed.
Marriela is doing well. She had an upper GI done last Thursday. It did not reveal any obstructions or any other reason for her vomitting. It did confirm the presence of reflux, it just doesn't go as high as her vocal cords so that is why it wasn't seen on the FEES test. So the Prilosec is needed and she will probably start on the Reglan soon. I feed her 3/4 of a bowl of grits today (her first solid food in over 2 weeks) and it has stayed down!!! So maybe we are on the road to recovery anyways. LOL Other than that she is doing well.
Annette sees the cardiologist tomorrow to get a baseline for her heart status. Her HIV as well as her meds can all weaken her heart. But in addition to that her lipodystrophy elevates her tryglycerid levels and that is a known heart risk. When she was only 5 years old, her cholesteral was in the 800's!!!!! NOT ONE person thought to do anything about this. Amazing. She is doing well on the Weight Watchers, it will be interesting to see how it affects her weight next week at IVIG.
Trayvon continues to do very well. He is going through a "beefing" phase (at least I hope it's a phase!). He complains about EVERYTHING!!! Winter is to long, it's to short, it's to cold, it's to hot, he wants eggs, just not the way you make them, he likes water, but not the temperature you give it to him, he likes baths, but not with the bubbles you picked, etc., etc., etc.!!! I sure wish there was a way to put your ears on vacation!
Well, that's it for now. Here are some new pics of the kids we did over the weekend (I know, I know, the one of all of them is off center, it's driving Peter insane!).
Take Care and God Bless,
Renee
Monday, February 16, 2004 2:58 PM CST
*******UPDATE - 2/19/04*******
Well, Nettie had her appointment and all is well in heart land. She has a very mild thickening of the left ventricular wall (don't know what that means, but hey, they tell me it's nothing to worry about)but is otherwise completely normal. Her EKG likewise was normal so no more cardiology visits unless there is a problem.
We did have some excitment here yesterday morning. At 7:30 am there was a loud "crash" outside our house, I jumped out of bed to find a grey minivan smashed into the left corner of our new conversion van. Peter had just moved it out onto the side of the road (legally parked) so he could get out the car to go to work. Apparently the lady hadn't completely defrosted her windshield and when she hit the defrost button the inside of the car completely fogged over, she was trying to pull over, but couldn't see and smashed right into the van. She only lives 2 blocks up the road from us. The van is totalled, she messed up the back doors and wiped out the entire back left side of the van. The garage said that the parts to replace everything are soooo expensive that it isn't worth the effort to try and repair it. I am sooo saddened. This is our third van in 3 years. I totalled our other "wheelchair" van when I was in a three car accident 3 years ago. Then we bought a Ford Windstar with the money from that insurance check and that turned out to be a major lemon. We sunk money after money into it and after the third engine we decided it wasn't worth effort to try and save it (actually we gave it to Peter's dad because he really wanted it. He put in a new engine for $1,400, but now he is sick of the van as well. LOL). Now we have to get another van and use the money to pay off the loan we took out to get this one and then take out another loan to buy a new one again. I am sick of CARS!!! We have a VERY ugly loaner for now.
Joshua slept alot today, very strange for him. Hopefully he's not coming down with something. Nettie saw the pulmonologist today and she is doing great! They lowered her Flovent to only one puff twice a day instead of 2 puffs. Tray goes to the eye doctor next week to see how the patching is working. Hopefully there will be improvements in that area as well.
Marriela's nursing should be starting next week. . . at least that is what they are telling me. She got her RSV shot today with an audience of three siblings. She cried momentarily and then stopped and went right down for a nap. Her feeding continues to do very well and I am slowly increasing her solids again and varying the palate. She was only 5 oz heavier this month than last so she really hasn't made any progress in the weight catagory. Her pediatrician did call to say that the upper GI did reveal that she was very delayed in emptying her belly and intestines of her food, this may explain the vomitting. So she did start on the Reglan which helps to speed up peristolisis (or the movement of the intestinal tract) so she clears her food faster. She has been great otherwise. (see her new braces in the picture, aren't they so cute!)
On a differnt note, I ordered Nettie some new forearm crutches today as well as a new walker for Marriela. We can't put them through the insurance company because then they will say that they are "walkers" and won't pay for any wheelchairs or strollers. We don't know yet how well Marriela is going to be able to walk long distances and such so she may need a special stroller. If we ask them to pay for her walker, they will say she doesn't need the stroller ($900 - $1,500) and if they pay for crutches for Nettie they will say she doesn't need a wheelchair ($3,000 - $5,000) so we pay for the less expensive items. I got a great deal on both things off of the internet!!! The walker was only $300 and the canes $100, not to bad if you ask me.
Well, that's it in Curkendall land!
Take Care and God Bless,
Renee
***********2/16/04***********
Hi everyone,
Well, not so far out from the last update this time. LOL We made our trip to Rochester and Joshua managed to stay awake from 3:30 am until the moment she started to put the wires on his head. He was asleep for most of the prep time and then did wake up breifly for her and followed her commands as she did a strob light test and a couple of other things. Then he was OUT! He slept hard until she woke him up about 45 minutes later. He was soooo overtired by that point that he was wired to the hilt for the rest of the day. Marriela and I went back to the Ronald McDonald house and we all had lunch and then we went upstairs to take a short nap (didn't want to drive with no sleep). Joshua had made friends with a wonderful family of kids (there were 6 of them, one was being treated for a brain tumor)and their mother agreed to keep her eye on Joshua as he watched a movie with them. After I woke up and packed up the room, woke up Marriela and transported everything to the lobby, I checked on Joshua (I thought they had just started the movie and it was only an hour and a half later), I found him sitting just as good as could be with the family enjoying a wonderful homemade Mexican lunch. This family was such a help!!! I still don't have any results from the EEG yet, nor have I heard back from the neurologist regarding increasing his meds since we had the levels drawn. It is SOOOOOOOO frustrating waiting on everyone else for answers!!! Just before we left for home, Joshua had his biggest seizure yet. He was sitting in a chair and had been really acting up a bit. Suddenly his eye rolled up and his arm extended out and his hand began to twitch (he was sitting the whole time), it lasted about 30 seconds and he was VERY disoriented afterwards. In the car he only lasted 10 minutes before he fell sound asleep for the better part of the trip home. I am anxious to see what the EEG showed.
Marriela is doing well. She had an upper GI done last Thursday. It did not reveal any obstructions or any other reason for her vomitting. It did confirm the presence of reflux, it just doesn't go as high as her vocal cords so that is why it wasn't seen on the FEES test. So the Prilosec is needed and she will probably start on the Reglan soon. I feed her 3/4 of a bowl of grits today (her first solid food in over 2 weeks) and it has stayed down!!! So maybe we are on the road to recovery anyways. LOL Other than that she is doing well.
Annette sees the cardiologist tomorrow to get a baseline for her heart status. Her HIV as well as her meds can all weaken her heart. But in addition to that her lipodystrophy elevates her tryglycerid levels and that is a known heart risk. When she was only 5 years old, her cholesteral was in the 800's!!!!! NOT ONE person thought to do anything about this. Amazing. She is doing well on the Weight Watchers, it will be interesting to see how it affects her weight next week at IVIG.
Trayvon continues to do very well. He is going through a "beefing" phase (at least I hope it's a phase!). He complains about EVERYTHING!!! Winter is to long, it's to short, it's to cold, it's to hot, he wants eggs, just not the way you make them, he likes water, but not the temperature you give it to him, he likes baths, but not with the bubbles you picked, etc., etc., etc.!!! I sure wish there was a way to put your ears on vacation!
Well, that's it for now. Here are some new pics of the kids we did over the weekend (I know, I know, the one of all of them is off center, it's driving Peter insane!).
Take Care and God Bless,
Renee
Wednesday, February 11, 2004 8:59 AM CST
******Update*****
Well, Marriela had her Upper GI study and it was negative for anything horrible. It did definately confirm that she has reflux. However, it doesn't come all the way past her vocal cords and thus the reason the FEES study couldn't see it. So she is going to probably start a new drug called Reglan to help with the control of this reflux. However, I should let you know, that she LOVED the barium. How very strange is that!!! So now the investigation continues as to why she can't tolerate her feedings. Hmmm, another mystery to solve.
I also forgot to mention that Joshua got his new inserts for his shoes and he loves them. Says they make his feet feel "springy". However, on the x-ray, the orthopedic surgeon saw a "spot" on one of his toes. He said "it's probably just a normal variation in his bone growth, but we really should re-xray it again in 2 months." Now, how does one take that news. This is a child who has already had cancer and umpteen other things go wrong. My radar is just going bezerk, but I really am just trying to put it out of my head until we get the new x-ray in April. He isn't complaining of any pain or anything, so I feel better about that. Hmmmm, another mystery. I am getting to hate mysteries. LOL
Well, that was today. Talk to you all soon,
Renee
Hi everyone!
I know, I know, I know, my updates are getting further and further behind. As I sit here now, I think, do I really have time to be sitting here updating this blessed page! But alas, I have decided, against my inner clock's better judgment, to do so.
Ahhhh, were to begin. First of all, let me say that I am in appointment hell right now. I have fit in soooo many appointments in the past 3 weeks that I feel soooo overwhelmed. I know it will slow down, really I do know this, but when you're in the thick of it, it's hard to keep that in mind.
First, my baby Marriela. She has to have an upper GI done today because she hasn't be able to keep down ANY solid food for almost 2 weeks. She keeps her Pediasure with a bit of baby rice or oatmeal in it down, but that's it. Her poor belly is also swelling up like a balloon for some unexplainabel reason. So we have to go and be checked to see if she has some scar tissue partially blocking her intestines and keeping food from going down. This is the test that Tray had last year and it is NOT pleasant!! Braium tastes terrible and if you don't drink it, you have to have an NG tube put in to give it. :*( She's so small I hate doing this to her. But we did get her braces and they fit great and she doesn't mind them at all! I'm going to have her evaluated tomorrow at the neonatal developmental center and if they think she should have a walker then we will order one right away so she can be up and on her own.
She had her FEES study done and it was nothing like I thought it was going to be, in a great way. I was pleasantly suprised that they numbed her nose and only put the camera in her nose for less than 5 minutes! She was fine and even smiled for the first part but did yell as they moved further down her throat (less than 2 minutes of the study). What they found. . . no reflux!!! She does have very large adnoids and tonsils and these could be the reason she is having a hard time with stage 3 foods because she is just having trouble moving the chunks past her large tonsils. We will monitor her for the next 3 months and if after she gets feeding therapy and has grown a bit, and she's still gagging on her food (this was before the vomitting started) then we will repeat the FEES. Most likely we will have to remove her tonsils and adnoids before the end of the year.
Joshua goes on Friday for his EEG out at Rochester. We are going out tomorrow night and staying at the Ronald McDonald House so I can keep him up all night. Then we'll go back on Friday afternoon and take a quick nap before driving back home. I just faxed the neurologist his Trileptal level. I was dismayed to find out that it was 31 (norm is 15 - 35) so he is already at the upper end of the limit. We will have to watch his level very closely after we increase it, because we don't want him to become toxic from the drug. He doesn't have much room to move up.
Nettie and Daddy are going out tonight to a Father & Daughter Ball. It's being sponsored by the foundation building our new Children's Hospital. She is a bit apprehensive (as she is about anything new) but I am sure they are going to have a great time. They are getting all dressed up (Peter in his suit and Nettie in her fancy new dress), I'll be sure to take pictures!
Trayvon is doing very well and his CT came back totally normal. So he must just be having regular Migraines. Now we have to journal everything he eats on the days he gets the headaches so we can find any common trigger foods (luckily he has been Migrain free for almost a month now). His vomitting is currently a thing of the past (though the zantac is AWFUL tasting, poor thing). Now we just need to work on the bedwetting situation and we'll be all set. LOL
Well, that's it for now!
Take Care and God Bless,
Gotta go do some HOUSEWORK!!!
Renee
Thursday, February 5, 2004 2:07 PM CST
Hi everyone!
I forget what I have updated on whenever I decide to do an update! LOL So forgive me if I repeat myself.
Marriela saw her pulmonologist who started her on reflux meds because she has lost some weight and is now refusing her food. She also had a FEES (fibro-optic enodoscopic esophageal study) done yesterday. This is where they put a very thin tube, with a camera on the end of it, down her her nose and look at her nose, mouth and throat. It was not really positive for reflux, but it did show that she has very large adnoids and tonsils for her age, as well as a slightly smaller airway than the average 18 month old. So combine the two issues and she just may be having a more difficult time swallowing and such. So we decided to just try the reflux meds for 3 months and if things don't get better or they get worse (loses more weight, stops taking her pediasure, etc.) then we will repeat the FEES again and probably take out her tonsils and adnoids. She is doing well otherwise and we can't wait for her to get her braces on Monday!! I just know she is going to walk very, very soon after that!!
Joshua had his blood drawn today to check his Trileptal level to determine if we have room to increase one of his doses. He is also scheduled for next Friday for his sleep deprived EEG out at Rochester. We will stay at the RMH the night before so I can keep him up late and wake him up early. Marriela will tag along with us. Joshua also had his feet x-rayed this morning in preperation of his inserts and his follow-up with the orthopedic surgeon. It was funny, because any layperson, looking at these x-rays, could easily see that there is no arch!! How did I miss this for soooooo long on my poor child! He continues to have multiple seizures (especially in the morning and later in the evening, when he is the most tired) so I am anxiously awaiting the results of his lab work as well as the EEG findings.
Still no word on Trayvon's CT scan of his head. But he continues to do very well on his Zantac now and no vomitting in over a week!
Nettie had her IVIG yesterday which went wonderfully. Her medicine was delivered to the hospital (after some very strong "words" were expressed by myself). We will try this system for a while. She has her cardiology appointment in 2 weeks to assess her cardiovascular system and to determine if it has been affected by either her HIV status or her HIV medications, since they are both well known for increasing the chances of heart attacks. I am sure all is fine, but I want that in writting, if you know what I mean.
Well, the bus is about to arrive, and Marriela is up in her crib screaming baby versions of obscenities at me! LOL
Take Care and God Bless,
Renee
Saturday, January 31, 2004 7:35 PM CST
Hello everyone!
Well, we certainly have been very, very busy here. Tray and Marriela are playing on the floor behind me and Tray is just laughing his head off at Marriela's faces while she attempts to play "peek-a-boo". LOL
The snow and cold weather just keep on coming and frankly, I'm getting a bit annoyed now. I can handle a few weeks to a month or so, but come on now!! 2 full months of snow and artic cold weather is getting a bit ridiculous. I have taken this up with the big guy upstairs and he has yet to get back to me. Why should I expect anything else, I have to wait on everyone to call me back, I shouldn't expect God to be any less busy than a doctor's office. LOL Just kiddin' guys.
Well, Marriela has seen the endocrinologist, and Joshua has seen the neurologist and Tray has had his CT scan of his head and Joshua and Tray have been to the dentist since our last update. First, we had to make a breif detour to the pediatrician on Wednesday before I got on the road to the endocrinologist (he's in Rochester, NY about 2 hours from here) because Marriela was up a good portion the night before just a screaming and her sats were having some fluctuations. So I asked the doctor to take a listen to her. Well, she had the beginning of pneumonia and a big ear infection so we stopped by the pharmacy as well to get her a dose of antibiotics before hitting the road. The travel wasn't horrible, but could've been better. The endocrine wasn't really impressed with her lab work but did decide to rerun the same labs plus added a few more. He said that if the test for her thyroid comes back back low again, then he will put her on the drug Synthroid until she is 3 and then retest her again to see if this is a permanent problem or just a temporary one. So we had labs drawn yesterday while Joshua was in Rochester for his neurology appointment. I'll get the results on Monday.
Ok, Thursday, Trayvon had his CT scan of his head. He did GREAT!!!! He stayed perfectly still and was so proud of himself when he was done. I rewarded him with a Tuna Fish sandwich and cookie from our favorite little deli. I don't have the results yet, but he hasn't had another headache since last week. The Zantac is also working wonders for his tummy and hasn't vomitted since starting it! So he will probably will need to stay on the Zantac as long as he needs the aspirin therapy (which will be for life most likely) to keep any ulcers from forming. Soooo, one problem solved! YEAH!
On Friday Joshua and Trayvon had their 6 month dental cleanings. This was a wonderful visit for the very first time ever for Joshua!! His teeth and gums looked great the dentist said (she strongly feels the prophylactic antibiotic he is on every other day is the miracle he needed) and he can go a whole 3 months til his next appointment!! Tray likewise had a wonderful visit and she found that his top 2 teeth are getting loose as well, so he should have a large space up there in the next month or so. How cute!
After the dentist I flew Tray back to school and Marriela, Joshua and I got on the road back to Rochester again. This time the weather was wonderful and we made great time. We saw neurology for what I think are seizures. As we were talking to the nurse practioner and giving her Joshua's medical history, he had several "spells". I pointed them out to her and she closely observed him, and YES they are definately seizures! Now that I know that all of these "spells" are seizures, he is having between 20 - 100 seizures a day. Most are just a few seconds (most people, including myself, wouldn't even necessarily see them) but some are longer and called "partial complex" seizures and they eat up a good deal of his "concious" day. No wonder he has such a hard time following directions. . . hearing loss, seizures, traumatic brain injury, etc, etc. It's amazing he does as well as he does! So we have to go back in the next week or so for a sleep deprived EEG and we go on Tuesday for labs to see what his current drug levels are in his blood. If they are low or in the normal range we will continue to increase his medication until either he stops having seizures or he has side effects or his levels become toxic in the lab work. If he doesn't respond to the increase in his current drugs, then we will have to wean him off of one of them and start him on another. If the EEG doesn't show the activity that the Doctor is looking for, the he will admit him for a 5 day "long term EEG study". I pray that this does not become necessary, as we just don't have enough hands for that. LOL
And that leaves just my baby Annette. She is doing great! I am very irritated with her new pharmacy that bought out our local home care company though. She is scheduled for her IVIG infusion on Wednesday. The new pharmacy's policy is that the IVIG has to be delivered to the patient and not the hosptial, like we have been doing it for years. So I have to wait on the day of delivery for this box to arrive so I can sign for it (that's the only way they'll let us have it) and then I have to bring it to the hospital and drop at the pharmacy there for them to mix on Wednesday when we get there. However, it is now Saturday and no one from the pharmacy called to let me know if and when they are delivering her med so now I don't know if it will be here in time for her Wednesday appointment!!! UGHHHH. But other than that, she is doing really, really well and has been very healthy for some time. She is just soooo beautiful and sweet. She also aced her report card and we couldn't be prouder if we tried. LOL
Well, Monday is cardiology for Marriela, Tuesday is eye doctor for Tray, and Pulmonary for Joshua and Marriela as well as a quick trip to the doctors for lab work for Joshua, Wednesday is IVIG for Nettie and Marriela has her endoscopic swallowing evaluation. Then we are going to be going back to Rochester for Joshua's EEG either Thursday or early the following week. Marriela and Joshua get their braces (well, Joshua is just getting inserts for his sneakers for his flat feet) the following Tuesday and Wednesday they go for their follow-up with the ortho doc to make sure their orthotics are the way he wants them.
Oh yeah!!!! Marriela also had her developmental assessment this past Monday (remember, I asked my best friend to do her speech and language eval!). She came in at 6 - 9 months across the board in all areas of development. So she will be getting OT, PT, speech and a teacher all 2 x weekly for either a 1/2 hour or a full hour, depending on what the therapist finds when they start therapy. I knew she would qualify, but I was sort of dissapointed that she hadn't made a few more gains in some areas, but just something to work on!
Well, she needs a nebulizer again, poor thing is SOOO stuffed up. So I gotta go.
Take Care and God Bless,
Renee
Tuesday, January 27, 2004 10:59 AM CST
And the snow just keeps on coming. Yuck. LOL We're expecting another 6" - 10" in the next 24-36 hours. I pray there is no snow day tomorrow, because I have to take Marriela to Rochester (2 hours away) for her endocrinology appointment! Their next opening wasn't until June! Joshua has to go out on Friday for Neurology and Tray has his CT scan of his head on Thursday.
Maybe I should back up a bit. LOL Tray is still not up to par. His belly is still bothering him and he has been very "quiet" lately. Because he miracuosly gets relief from his "migrains" after he vomits, the doctor is concerned. Apparently that isn't typical of a migraine. Yes, they can make you feel sick and even can cause you to vomit (I know mine have) but it isn't normal for the headache to magically go away after vomitting. This is more common with an increase in intercranial pressure. So he is going to have another CT scan of his head on Thursday to see if there is any signs of pressure problems. The doctor also thinks that he has the start of an ulcer due to his aspirin therapy (he takes one aspirin a day for his heart) so we are starting Zantac again to see if the vomitting gets better. He got sick at the movies on Sunday and again yesterday immediately after getting home from the doctors office. So here's hoping the Zantac works.
Now, Marriela is going to the endocrine, I already shared the reasons why for that. Joshua has an appointment with the neurologist because he does not have a local neurologist. His has been going to one in NJ, but with the new baby and Tray being sick, it is virtually impossible for me to fly down there and stay for 3 days so Joshua can see his neurologist. Our pediatrician set up an appointment with a new one in Rochester (we don't like ANY of the local ones at all). Because I think he has been have more seizures again, they made an appointment for this Friday. So after taking Tray and Joshua to the dentist, I'll be getting right on the road.
Marriela had her developmental assessment yesterday and was deemed eligible for services. I knew she would be. She is functioning in the 6 - 9 month range for everything. I knew this also. So they recommended speech 2 x weekly (1/2 hour each), PT 1 x weekly for an hour, teacher 2 x weekly (1/2 hour each)and OT 1 x weekly (one hour). They asked me what my goals for her were and I told them "to walk and talk and eat normally". I was joking but they took it seriously and made that her 6 month goal!! LOL So here's hoping that we can work wonders in 6 months (or they're going to be very dissappointed. LOL).
I am still waiting to hear on the nursing services, but as you can see with her schedule above, I think I'll need her just so I can run some errands and such. So I'm glad they said ok.
Well, that's it for now.
Take Care and God Bless,
Renee
Saturday, January 24, 2004 8:16 AM CST
Suprised aren't you, that I am updating already!? LOL
Well, poor Tray has had a difficult couple of days. The night before last he woke up with another Migraine that lasted for over 2 1/2 hours. He ended up vomitting profously twice and only after the second time around did he start to feel any relief. However, all day yesterday he has had a bad pain in his stomach and he woke up with the same pain today (he has abdominal migraines as well as traditional ones, so the stomach pain is the blood vessles in his abdomine constricting - just like they do in the head during a regular migraine - causing him a lot of belly pain). I am going to try some Tylenol and Motrin combined today to see if that helps. Poor thing is starving but each time he eats, he gets sick. Hopefully this won't undo all of the good weight gain he has had. We go to the doctor on Monday for a closer look and then she will decide whether or not we need to re-run the MRI of his head or if she wants one of his belly as well.
Joshua is at his basketball game right now. He LOVES basketball! It's so nice to see him excited about something other than WWE. LOL
Nettie is doing very well. Her nurse is back from PA and seems to be doing ok after her mothers death. Thank you for the prayers.
Marriela is also doing very well. She is SOOOOO ready to walk!! I don't think we'll have to wait very long for her to start walking on her own once she gets her braces!! It's so funny to see such a tiny little thing pushing her toys all over the house. :-) Nettie asked for her "canes" now, because she is. . . and I quote here "I am jealous of Marriela so I want to walk too." I was so sad for her. She sees so much of herself in Marriela, that she just assumed that the baby would always use a walker or wheelchair just like her. Now that the reality of Marriela being able to walk by herself is here, she wants to walk as well. We are going to buy her some nice bright colored forearm crutches next month and let her practice with them at home. Maybe this is exactly the incentive she needed to get up and learn to walk (the therapist always felt she could do it, but Nettie just wasn't into it).
Well, Tray-Tray's calling me for some rice. Better go give it now, so he can finish throwing up before I make my breakfast. :-(
Take care and God Bless,
Renee
Thursday, January 22, 2004 11:49 AM CST
Hi everyone!!
Hello from snowy, cold, blustery NY. At least the kids are finally back in school. LOL We continue to move along at break neck speed here getting everything in place for Marriela and keeping up with the kids homework and activities. Today the visiting nurse come out and gave her her RSV shot. Unfortunately for Marriela, she has gained some weight (which is really a great thing!) because it meant that she has to get 2 shots instead of one. But she handled it like a trooper and stopped crying almost as soon as the shot was finished. I spoke to the nurse about maybe having a home health aide come in to help with Marriela so that I don't have to take her out into the bitter cold and in the doctor's offices (with the other kids) or stores where so many people are sick. She actually felt that Marriela should have a nurse come out instead and that I could have as many hours as I wanted!! I was shocked! I was afraid to ask for the aide, and I was only going to ask for 5 hours a week, just for shopping and maybe a doctors trip with one of the other kids! So we settled on 2 days a week for 4 hours and I can pick and chose which days and which hours. She is also going to see if she can get a nurse for the boys (one nurse would take care of Joshua, Tray and Marriela) so that Peter and I can go out for a nice night on the town, etc. Nettie will still have her nurse so we won't have to worry about her. I was in SHOCK! So we shall see how that goes. I won't get my hopes up though, it has never happened before (though she did say that she has one nurse that cares for triplets).
Let's see what else is new. Oh yeah, Marriela's lab work all came back and it is official. . . she is HIV NEGATIVE!! I don't know if I told you that her mom is positive, but she was, so this was the final test needed to prove that Marriela was in fact, not infected. We weren't worried though. LOL However, her lab work did show that she has a thyroid problem (underactive) and that would explain A LOT about her need for sleep, her hair and her itchy skin. So we go to Rochester next Wednesday for an endocrinology appointment. I think they will start her on the drug Synthroid. Then maybe her hair will start to grow. :-) Other than that, her lab work all looked really good so that means that she is digesting and absorbing her food just fine. It is possible that she has just not gotten enough calories her whole life, that her body is just learning to handle these normal size meals. She is also no longer anemic (didn't think she was with the amount of baby cereal I make her eat each day because it is loaded with Iron!)
She will also have her developmental assessment done on Monday to start her services at home. My best friend Kimmie will be doing the speech eval!! I think that's cool. Kim and I went to college together for speech therapy. She went on to get her Masters and she has stayed in the field. I would like to go back to school to finish my Master's someday, but I would finish it in Special Ed, not speech. So Kimmie will come out on Monday and "evaluate" my baby. LOL (I'll be testing her!)The case manager feels that she will qualify for OT, PT, speech (which will include feeding therapy) as well as a special ed teacher. I'll need the nurse just so that I can go out anywhere! With all of those therapists coming in, I'd have to become a hermit just to meet her therapists schedule. LOL
Marriela will also see the cardiologist and will have the FESS study done the following week. If all goes well, then we will be able to stop 2 of her medications and the study will show that she has no reflux or aspirations, then we can also stop the cardiac and apnea monitors again! Yeah!
As for the other 3, well they are all doing great! Nettie had her computer evaluation to find something to help with writing. It was very good in that it identified a program called "Co-Writer" and she was VERY good at using it with only a little bit of training. So Peter and I will look into how much this will cost to purchase one for home. Hopefully the school will get a program for the school so she will have access to it wherever she is doing her school work. This program will also help Joshua A LOT! So it would definately be worth the cost.
Tray is also doing very, very well. His vomiting is less and he is no longer back on the Carafate. If he still continues to cycle through the vomiting then we may have to go back to GI, but I think we have it all under control now. He LOVES the snow and spent 45 minutes outside yesterday, sliding down the back steps on his butt. LOL That was until his poor hands got so cold they turned blue (common with heart kids) so he had to come in and get them thawed out with the hair dryer.
Peter and I are making plans to take the kids to Disney World over the Spring break in April. I am excited to see Tray's reaction to the place because he has never been. Marriela will be to young to really remember it, but she'll have a blast!
Well, that's it for now.
With love and prayers,
Renee
Monday, January 19, 2004 1:03 PM CST
I know, I know, it has be a very long time since my last update! Adding just one more kid to the mix has me quite busy lately! LOL
Marriela has seen so many doctors and has all kinds of things happening so she's keeping us busy. But in a great way. The pediatrician saw her for her "well" child visit. She feels that there is a strong possibility that Marriela has a malabsorbtion issue. The reasons for her thinking this are many. First, she has a very picky/poor appetite. She doesn't "ask" for food like a regular baby does. I could go a whole day without feeding her, and she would never say a word (that's not always the case at night though, little stinker!!). So we have been giving her 2 - 3 cans of Pediasure daily instead of whole milk to give her more calories, nutrients etc. However after eating (anything) her belly swells up really big and then has trouble breathing because her belly is pressing on her lungs so much. Also, as I was doing her hair the other day, I was holding a tiny little braid in my hand trying to remove her beads, the WHOLE BRAID fell off in my hand!! It didn't "break" or "pull" off, it just lifted right off of her head! It was actually really kind of gross. Poor thing has so little hair to begin with, and now she has a big bald spot smack dab on the top of her little head.:-(
This can be caused by nutritional defects or defects of the thyroid. She is also itchy, itchy, itchy. Now I know it's dry weather, but she is really ITCHY! Add to that the fact that she had rickettes as a baby in the NICU which resulted in a broken upper right arm, the pediatrician thinks she isn't absorbing some key nutrients and hopefully we can identify them via the bloodwork. The pediatrician also ordered her to be put back on the Cardiac/Apnea monitor with the Sat monitor as well. This way we will see just how high her heart rate is going as well as how low it is going. But Marriela HATES the strap that holds the electrodes in place so we haven't even got her to wear it a complete night! I'll call today to see if we can get the sticky kind instead. The monitor can be discontinued if no major events occur (on the monitor) and she is cleared by the cardiologist as being heart healthy. On Wednesday the Visting Nurse will be coming out to give my poor baby her RSV shot. This month she only needs one shot, but once she is 18lbs she will need the dose split into two doses (one in each leg). She'll do this monthly until April or May and then will do it again for one more year from October to May 2005. Tis will keep her fragile lungs safer from the RSV virus that is rampant during the fall and winter months.
She also saw the Orthopedic surgeon who agreed that she has mild cerebral palsy and needs braces on her feet to help her to walk. She goes tomorrow to get fitted for those. The doctor felt that with the braces, Marriela will be up and walking all by herself within the next couple of months! She can already go up stairs (though has yet to learn how to stay on them without landing on her head). So I don't doubt the fact that she'll be walking soon.
Joshua also saw the ortho doc and yes, he has flat feet. The doctor ordered him x-rays of his feet and he will also be fitted tomorrow for inserts in his shoes to help "create" an arch.
Trayvon and Nettie are both doing great as well. Nettie is suppose to go for her evaluation for her computer to help with writing, but I was going to send her with her nurse and then meet them there after the appointment with Marriela and Joshua. However, today, Nettie's nurse had to leave because her mother had passed away in the night. She was so devestated. I know someday I will get the same call for my mother or father, so it was very, very hard to see someone go through that. She won't be back for probably at least a week (she has to go to PA) so I am not sure how I will get all of the appointments fit in. Oh well, I'll figure something out. Please say a prayer for Ginger as she goes to make the arrangements for her mother and decides what to do for her father who is very ill himself.
Well, that's it for now!
I'll do better with the updates once the kids actually get back to school! They had 3 days off last week due to frigid weather and today they are off for Martin Luther King day.
Take Care and God Bless,
Renee
Thursday, January 8, 2004 10:01 AM CST
Hello everyone!
What a week this has been. The kids and Peter were off for 18 days and on the first day back to school and work, Annette and Peter both get very sick. Peter came home with a 103 temp and "intestinal distrubtion". Nettie made it through the first day, but by that evening, she was a regular on the potty herself. The next day she was so dehydrated we had to start giving her fluids continuously via her g-tube using the feeding pump. We haven't had to do that in YEARS!! Marriela, me and the boys have all been doing well so far. Nettie recovered mostly in one day, but she had IVIG so that kept her home from school one more day. Peter on the other hand has missed 3 days of work and went today thought his belly is still not doing well, but he is fever free.
Marriela saw the pulmonologist yesterday and he had a lot of suggestions, concerns and praise. He officially proclaimed her to be "failure to thrive" since despite her increased eating, she has fallen way off the chart for height and weight (even when you subtract the 3 months she was early). So we will have a full nutritional evaluation done in one month. He was also very concerned that she was still on the diuretics (she has been on these since birth to keep her lungs "dried" out). This is not the way they use diuretics here and after she has a full cardiology work-up, we will get her off of them asap. He started her on an inhaled steriod twice a day and a long acting asthma med twice a day. This should "prep" her lungs for the removal of the diurectics. He is also setting up an appointment with the NICU developmental team here in Syracuse to have her fully evaluated. He also wants her to see the eye doctor right away, as it seems, most premies need glasses due to weak eye muscles. Great. . . we have enough trouble trying to keep track of Tray's (3 pairs in one year!) and Nettie's (at six years old, she went through 6 pairs in less than 9 months - kept hiding them!) How do you keep glasses on a baby!!!??? And the last thing the Pulomonologist is going to do is order something called a FESS study. This is where they put a very small (thin) tube with a camera on the end of it, down her nose and then feed her, to watch how she handles the food, where it goes and if she has any reflux or if it goes into her lungs instead of her tummy.
Next week she sees the eye doctor, orthopedic surgeon and pediatrician. She will also have lab work done to be sure she isn't anemic anymore and that her nutritial status is good. He also gave me a list of labs to have done for the cardiologist, so we won't have to make another appointment after the cardiologist sees her.
WOW!! Poor thing is going to be put through the wringer! But this way we will be able to treat and help her overcome any and all difficulties she may have. In addition, it gives us a great picture of her now, so if anything changes, we already know how she was.
Joshua and Trayvon are both doing great! Joshua finished up his Neuropsychological testing and now we will meet with the psychologist to go over the results and to see what we can do to facilitate his school program.
I'm doing fine as well, guess that is just a side note. LOL
Well, take care and God Bless,
Renee
Thursday, January 1, 2004 12:37 AM CST
Hi everyone,
Oh how the time flys! Peter has been in Portland, Maine at his good friends wedding since Tuesday. He is coming back tonight, Thank God!! Marriela has been VERY cranky for some reason that I have yet to figure out. She cried (well, screamed would be a better description of the sound emminating from her small body) for the past 2 hours and then. . . nothing. She just stopped. Go figure. Joshua and Trayvon are tired of one another, 2 weeks off is a very, very long time! LOL I hope to get the kids out for the weekend a bit before they head back to school.
I did steam clean the rug but unfortunately, it looks like Minute Maid fruit punch is stronger than the steam cleaner. So now Nettie has an interesting pattern next to her bed that resembles the birth mark on Gorbachev's head (I know the spelling is something like that!). She doesn't seem to mind. LOL
Tray saw the Cardiologist yesterday for his 6 month check up (though it has actually only been 3 months since he saw him). Dr. Byrum was THRILLED with Trayvon's progress since changing his meds. Trayvon was 20.2 kilos, up from 19.4 kilos three months ago, and that was without the pediasure! The doctor stated that getting over the 20 kilo mark is usually one of the most difficult things for cardiac kids to do and Tray has done it ALL by himself. We didn't even have to do an echocardiogram since he looks and sounded so good. We will do one in 6 months at his next appointment.
Marriela seems to be over the worst of her respritory infection and other than these crying jags, she seems to be well on her way to a full recovery.
Nettie likewise recovered fully from her vomit fest she had the other night. Luckily no one else decided to join her little party with the bucket. I guess they felt somethings are best enjoyed alone. LOL
I am now remembering the "sleep devprivation" that goes with having a baby. She is a great baby, but in general, you just get less sleep with a baby around. I am thinking that once the kids get back in school and I get her back on a stricter schedule she AND I will be much better rested. At least I am praying for that. LOL!!
I would like to take a moment to say a prayer for the families facing 2004 less one member of their family. My heart aches with the number of losses the world has experienced in the past several months. So many children, so much suffering. I am in awe of the parents who make one of their life's ambitions to raise awareness and money for the many different and awful illnesses that rob our children of their childhoods and in far to many cases, their lives. One of my goals this year to get listed as a marrow donor. I also intend to help my good friends raise money in honor and memory of their angel, Breanna.
May God shine down upon you this year.
With love and prayers,
Renee
Tuesday, December 30, 2003 11:10 AM CST
Hi everyone,
Well, things have been hopping here, thus the reason I never got the last update posted before I had to do this one! LOL
Marriela has been having a rough start to her new home. She had her first ER visit on Saturday due to increased respitory distress and a 103 fever. They started her on a dose of steriods and we increased her nebulizer treatments and added a steriod to her nebulizer as well. I took her yesterday for her to have a post ER check up with the pediatrician and it was discovered that now she also has an ear infection. Last night she was coughing and coughing which kept her up for about 3 hours (12:15 - 3:15). Why do they ALWAYS get sicker during the wee hours of the morning??? Nettie has also been sick. She woke up at 3:30am Sunday night and vomitted all over her white rug. Unfortunately I let her drink a RED fruit punch at the movie I took her too that night. :-( So today I'll be renting the steam cleaner to clean her room. Tray and Joshua are doing well. Joshua has an appointment with the orthopedic surgeon to have his flat feet evaluated. I don't know if I told you or not, but we discovered that Joshua has severely flat feet. No wonder he is always complaining about his shoes and the "bump" in them!! Hopefully it will just take an orthotic to fix it. marriela will also so the orthopedic doc the same day to evaluate her feet as well. Well, the baby is down for a nap and I can't hear her all the way down here, so I need to go.
May God grant you all peace, happiness and health in 2004.
With love,
Renee
December 26, 2003
Hello everyone and Happy Holidays (whatever you may be celebrating)!! Peter and I truly feel blessed to have such a wonderful family and so many friends around the world.
Christmas was very nice and relaxing here. Though I wish I could say the same for Christmas Eve. . . which was sort of a comedy.
We had a nice brunch for family that live close by. After that we started getting the kids ready for church. Joshua was protesting loudly the whole time (because I made the mistake of letting him know that there was no Sunday school during Christmas Eve service). At church Marriela decided it was her turn to protest the experience (to loud, to many people, and forced to wear a dress, ughhh). So I spent most of the service in the back of the church while Marriela crawled around. When we got home Marriela made it abundantly clear that she was NOT ready for bed anytime soon. So we tried to get the boys down so I could start “working”. But they too proved to be resistant and finally Peter resorted to just lying on their bedroom floor and “pretended” to start snoring so that they would fall asleep. A bit later I went up and woke Peter up (since he pretended so well he put himself to sleep as well LOL). We finally got Marriela to bed, the gifts in place (had to resort to some small garbage bags for the final gifts, as I was running out of steam as well as paper) and headed to bed. Less than an hour later, Trayvon came into our room crying that he had a headache. Moments later he had a full blown Migrane ( we had let him have some pepperoni from one of those prepackaged trays, and they tend to have a lot of MSG in them). So I got him some motrin and spent the next hour filling him up with Pepsi (for the caffine) and praying he didn’t wet the bed. He finally had relief about an hour or so later and then Marriela decided that she wanted to cry for another ½ hour. Needless to say, I was the slow one Christmas morning. LOL
The kids seemed very pleased with Santa’s choices of gifts (though poor Nettie is patiently waiting for mommy or daddy to figure out how in the Hell you download MP3 files from the computer into her new MP3 player 3 days later).
Marriela has adjusted very nicely to her new home and family. We have all adjusted very well too. She is a very happy baby and typically sleeps a full 11 hours a night and takes 2 naps a day. She was eating very well, but she has developed a cold in the past few days and her appitite is dwindling quite a bit now. She has also shown us just how fragile her little lungs really are. She has been having quite a bit of trouble with her breathing over the past few days and we have been using the nebulizer every 4 hours faithfully to try and keep her from having to go to the doctors or worse yet, the ER. Too much Flu. But it is very clear that her little lungs won’t be able to handle any big infections for a while so we are going to be much more diligent about where we go and who holds her.
We are also much more aware of her strengths and her needs. She definitely has some issues with her lower legs and there is no doubt that she has at least some mild cerebal palsy. I will be getting her into see an orthopedic doctor as well as a rehab doctor that specializes in children with “high” tone, to see what early interventions we can do to try and reduce the effects of the tone on her walking and such. But she has also shown many improvements already with her speech. When she came here, she only had a very funking gargling sound, a raspberry sound and the “dadadada”. Now she can say bababa, yeah, dadd-eeeeee and clucks her tongue. She crawls everywhere and really likes having freedom to roam pretty much wherever she wants.
The kids have really accepted her and all of them are doing well as well. Monday Joshua finishes up his Neuropsychological testing. On Tuesday, Nettie goes for her computer evaluation to find something that will help her with the writing component of school and on Wednesday, Trayvon goes to see the Cardiologist of his semi-annual checkup. The cardiologist is going to be pleased with Tray, this is the longest we have ever gone without needing to see him, plus he has gained some very nice weight. Now we just have to see if his heart is behaving on the inside as well.
Well, that is it for now. I’ll give a more thorough update (I know, what the heck could that one look like if this one isn’t thorough! LOL) next time. I’ll also update the pictures in the near future. It’s just soooo much harder to do anything while the kids are home from school (plus Peter has been home for the entire school break as well). So maybe after they’re all back in school I’ll write some more. LOL
Take Care and God Bless,
Renee
Saturday, December 20, 2003 6:41 PM CST
Hello everyone!!
Well, as you can see from the pictures above, Marriela has come home!! I can't believe what a happy, easy going baby she is. I flew to Boston early Thursday morning and then had to hang out at the airport for 7 hours until the foster mom was home to send the baby with the social worker. I went to see the movie Lord of the Rings just to kill some time. Then the social worker brought her to meet me at the airport and we went to check in. I was suppose to fly out at 6:00pm on a flight that connected in Newark, NJ. I wasn't happy to have to take her into the Newark airport and the layover was almost 2 hours, but God was shining down on us. When I went to check in, the machine told me it was to close to departure time (I had e-tickets) so I asked the ticket lady what was going on, she stated that Continetal had a 2 hour delay for the 6:00pm flight and since I would miss my connection in Newark, they bumped me to a 5:00 flight. NOW HOW WOULD I KNOW THAT!!! This lady was soooooo nice, she checked another airline and found me a NON-STOP flight to Syracuse at 6:55 and arriving at 8:25 (a whole hour earlier than my scheduled flight!). It was also a much bigger plan (34 seater vs. the 16 seater) so we had lots of room to move and drink our bottles. They even served a complimentary drink!!!
Marriela has had a wonderful acclimation to the new house. She seems a bit shell shocked upon awakening in the morning, but she is still happy. Now that she is with us though, we can definately see just how far behind she really is. She can't stand and has a very difficult time making "steps". She is TINY!! We will be bulking her up in now time though. She really enjoys Pediasure and she has readily taken several different types of baby food mixed with oatmeal. She takes 2 naps a day!!! AND falls asleep by 8:30 and sleeps until 7:30 (actually I have had to go in and wake her up!). She loves to babble and blow spit bubbles (kinda gross after a bit :-)) and she smiles all the time.
The kids are loving her and they are even getting along better! Nettie and Tray actually had "sister and little brother time" as per her initiation!!! If you knew Nettie, you would understand why this is such a shock!
Tomorrow is Marriela's coming out day at church. I have a beautiful outfit for her to wear and can't wait for the world to meet her.
Well, that's it for now. I'll update more on the medical front in a day or two. I've gotta go and "play" with my baby now. LOL
With love,
Renee
Monday, December 15, 2003 7:46 PM CST
Hi everyone!
It's been a while. I was quite upset by the whole Marriela thing and I still don't have my baby. I am hoping that I can go out this Thursday and get her. I really want to fly out and return in the same day, but since we just spent a fortune going out and staying for 3 days (airline ticket, hotel room, cab rides, food, and baby supplies for the hotel room)we really don't have the money this close to Christmas for ANOTHER plane ticket. So we are asking the Boston Department of Social Services to pick up some of the tab (they have to reimburse us anyways). If not, then Peter and I will be driving to Boston together and bringing her back via car. But since she wasn't thrilled with the car seat for the 15 minutes to the hotel, I am SURE the idea of being in one for over 6 hours really isn't going to fly! So obviously the 2 hour flight is superior to the car ride. LOL
The other kids are doing well. Tray come home with me sick today. He had a bit of diarreha at school and said he was tired. I had already been there for CSE meetings and visited the nurse only to find Tray lying in the bed. LOL He did throwup once at home, but then couldn't wait for DINNER!! He had 2 helpings of rice as well as chicken and a slice of cheese. Obviously he was feeling better!
Joshua is still doing well on the antibiotic but we have developed a new issue. He now has severe belly cramps on the same days that he has to take the Zithromax. So now we have had to add another medication, immodium, to his ever lengthening list of meds. But he is doing better right now. His cough is much better and his nasal congestion is greatly improved. So we'll see what happens from here.
Nettie still has her cough. We saw the doctor and she said that there was no real infection, continue what we are doing. Well, I don't think this is quite doing it. So I'll give another week or so and then I am insisting that we do an x-ray and start an antibiotic.
Other than that, all is well here in Curkendall land. We are ready for Christmas (for the most part) and excited to have 4 children this wonderful Christmas.
I say many prayers a day for many children who need them. Sometimes I feel so bad reporting what seems like trivial issues, when others are literally batteling for their lives. However, I remind myself that these kids here have all also battled their way back from the edge many times. So I add prayers thanking God for my beautiful children.
With love,
Renee
Thursday, December 4, 2003 1:06 PM CST
******NEW PICTURES ADDED TO THE PHOTO PAGE AS WELL!!!*******
Saturday, December 6, 2003
Hi everyone!
We had a wonderful visit with a Bearmonkey named Jeff (we'll spare you the details of how he became a "bearmonkey"). Peter and he played football at the same time and met on a football feild back many a years ago. Thank you Jeff for your delightful visit! We'll be sure to reciprocate one of these days. :-)
Joshua saw the pulomonologist as planned. He was frustrated that Joshua is experiencing so many difficulties and as he sees it, should be back on the IVIG immediately. He called the immunology doctor who completely disagreed and stated that "I make it very hard for him to do his job, because I push him so hard." Whatever that means. The reality is that I didn't ask the pulmonary doctor to call him, that was one medical doctor calling another with an opinion. I took Joshua in for treatment of lung issues and feels that they aren't lung, but immune issues. So where does one go from here. The pulmo doc did put Joshua on a prophylactic antibiotic to try and clear up some of the lung and sinus issues as well as added an inhaled steriod to his regime. He feels that this is like giving Tylenol for a fever without treating the underlying cause of the fever.
Joshua missed his first basketball game because he was feeling so bad. His nose was raw and he hadn't had a good nights sleep in almost a week. However, after one dose of antibiotics (500mg of Zithromax) he is feeling AND looking much, much better!!! So maybe the prophylactic antibiotic will work for Joshua.
Tray, well. . . he's still eating. LOL It's only 11:00am and he's already had a bucket of popcorn, a bagel, 5 pepperonis and 3 glasses of water and he just asked me "When are you making me some lunch mommy?" Ahhhh, well, at least someone likes my cooking!
Nettie is showing all the signs of clearing this cold. She has had a very good past 2 days with just a bit of coughing.
Tomorrow we have 2 Christmas Parties to go to. One at the local zoo and one at the church. The kids will be doing their Christmas play for the first time at the party. I can't wait to see it.
BUT THE BIGGEST NEWS OF ALL!!!!!!
I LEAVE AT 7:20 MONDAY MORNING TO GO AND GET MARRIELA!!!! I will be with her all day at the foster mom's home and then on Tuesday I will pick her up and take her to the Hotel where I will spend the day and night with her. We will then fly home at 7:30am Wed.!! I can't believe it is finally happening!
So my next update we will be a family of 6 and there will be lots of pics of Marriela.
With love to all,
Renee
Hi everyone!
First: Please check the "past journal" entries and check in on some families that could really use some support at this time.
Ok, with that said. Here's is our update.
Joshua and Nettie continue to battle their colds, infections, or whatever this chest crap is called. I actually had to pull out the suctioning machine for Nettie yesterday (haven't done that in over 2 years)to suction out the large amounts of secretions she is having difficulty clearing. We are still trying to manage it at home, but it's getting more difficult daily.
Joshua has a full fledge something going on. His nose is just flowing forth and his is getting more and more congested too. He sees the pulmonologist tomorrow, that just happens to be very convenient. LOL He will also see the dentist to check his mouth again.
Tray is now up to 45 lbs!!!! That's 5 lbs in 6 weeks. He took 2 years to gain the same amount of weight previously. LOL Food is his friend (bestest friend at this time). He likes me to plan out the daily menu for him immediately upon awakening and the moment he steps in the house after school, watch out if you don't have snack ready for him!! He is also healthy as a horse at this time. He goes to see the cardiologist New Years Eve. I think his cardiologist is going to mildly suprised by this recent change in Tray, good suprised though. :-)
Nettie saw the endocrinologist yesterday. He was very willing to listen to my concerns, ideas and proposals. He also called in the head of Immunology to go over the aspects of treating lipodystrophy in HIV kids with Growth hormone. He said many of the same things that the doctors here did. However, he did say that they would be willing to work with both endocrine and me to try the growth hormone if in fact she is deficient. With that said, we had labs drawn and should hear back in 10 - 15 days. Nettie was very disappointed. She thought she was starting the shots right then and there and she would be "skinny" by Christmas so she could wear "sexy" clothes. My heart was breaking when she shared this with me. I had some explaining to do and after all was said and done, I think she understood the need to wait for the labs and then proceed carefully with the doctors.
We also had Nettie's Tri-annual review conference. This is a meeting where they go over all of the testing they do every three years (IQ, academic achievement, motor skills, etc.)I was shocked to see that Nettie's IQ was only 43 on the testing. This is in the severely retarded range. Anyone who knows Annette would seriously question those results. So we took them with a grain of salt. Her academic skills all fell at about the 6 -8 year old range. This I expected. I am so hopeful that Annette will be able to live independently, but it just may not be in the cards. I sure will be trying for that goal though!
Joshua started his full Neuro-psychological testing yesterday as well. He will also have all of the same testing as Nettie and I should be getting the appointment soon to go over the results. I am more nervous about his than I was about Annette's. With all of the recent radiation changes, I am scared to find out if his IQ is still the same of if it has gone down. Please pray that it is the same (or better if you really feel like asking for a miracle LOL).
Nettie also saw the orthopedic surgeon for her back. She has a very, very mild scoliosis, but no reason to treat as she is done growing. She also has a very, very mild kyphosis (or rounding of the shoulders and upper back). Again, nothing can be done at this point. So she is now going to just be monitored twice a year and that's it for surgery, hopefully for the rest of her life!
We'll that's about it for now. I added the kids newest school pics above and will change the photo album soon.
Take Care and God Bless,
Renee
Friday, November 28, 2003 2:03 PM CST
Please pray for those that have recently lost their precious children.
http://caringbridge.org/ca/bennettboys/
Funeral Dec. 2nd
http://www.caringbridge.org/page/christina/
Funeral Dec. 2nd
http://www.caringbridge.org/mn/noahjay/index.htm
Funeral Nov. 28
http://caringbridge.org/ny/connors_page/index.htm
http://www.caringbridge.com/pa/colby/
http://www.caringbridge.org/page/anthonym/
http://www.mighty-max.com/updates.html
Funeral Dec. 2nd
Max was taken off of life support and with the love and support of his parents, his spirit flew to it's new home. Please stop by and offer some words of support.
As you can see there are many families celebrating their holidays saying final goodbye's to their children. Again, as we give thanks for our own good fortunes, please stop by and offer support during these difficult times. I know it can be hard to go to a child's page that has passed away, but this is when the family needs more support than ever!
OK, Time for an update.
As I scanned through the various caringbridge sites this morning, so many were expressing all the things each family is thankful for. I have to echo those same sentiments. My Children are here (sometimes healthy, sometimes not, but definately here). My husband loves and supports me in all aspects of our lives. I have a beatiful home ** my son, Joshua, just came up and kissed me on my cheek, how wonderful that was ** and love to fill it and then some.
I have a small list of things that I intend to do different this year. . . Ohhhh, why do I do this to myself!!!
Ok, here goes. . . my promises to myself -
1. I will NOT stress over trivial things (I have the right to determine what is trivial to me LOL)
2. I will find a doctor for Joshua that will see him as the individual he is and approach his health from that perspective, rather than relying solely upon lab work.
3. I will do something for myself every week. (scrapbooking, walking, massage, etc.)
4. I will get my hair colored and enjoying the process of getting to change "my looks". (I usually panic and chicken out at the last minute. I am VERY routine oriented, but I have always WANTED to try a different hair color, just chicken. LOL)
5. I will lose 15 pounds and do it by eating good and excercising. (this will be my most difficult challange, I love sweets...)
Ok, that's it. I already figure I'll blow one of these promises somewhere along the line, so I better keep the list short to increase the likelihood of success. LOL
The kids are all doing well. Tray's best holiday thus far is Thanksgiving. HE LOVES TO EAT!!! He has been walking around with his eyes wide open looking and trying ALL of the different foods we have left over from yesterday. :-)
Nettie is trying to pull the "I'm-a-teenager-and-I-don't-have-to-come-out-of-my-room-just-to-visit" crap. She gets agitated with me when I tell her she can't spend her WHOLE day in ther room listening to Hip Hop music! TEENAGERS, can't live with them, they can't live without you!
Joshua has a persistant cough and now has even more nasal congestion. But he's still VERY active and not sleeping excessively. He's seizures have definately taken a nice turn for the better and I think the one extra dose is all he'll need for a bit.
I hope to hear from the adoption agency on Monday so I can make my plans to leave Friday after Joshua's two doctor appointments to go to Boston. I will stay the weekend and then bring Marriela home on Monday!! What a wonderful Christmas present!
This weeks appointments:
Monday - Meeting with school to go over Annette's newest testing results.
Monday - Nettie meets with excersice physiologist to asses leg strength and to formulate and excercise program for her legs.
Tuesday - Annette to Rochester (2 hour trip)to see new endocrinologist to discuss her lipodystrophy and to come up with a possible treatment plan.
Wednesday - Annette to orthopedic surgeon to go over back x-rays regarding scoliosis and back pain. (don't think there is anything wrong, other than her weight and having to sit all the time in a wheelchair. But hey, I'll let the surgeon tell her, then she can yell at him, not me. LOL)
Wednesday - Joshua to Rehab for a full neuro-psychological evaluation to assess his learning difficulties.
Thursday - My day off!!!
Friday - Joshua to pulmonologist to go over this persistant cough and to try and determine if it is infection, chemo or inflammation related and treatment options.
Friday - Joshua to Dentist to re-check the area that had the large oral abcess. His gum is still very sore and I think I'm going to just ask her to take the tooth right out to prevent another infection.
Friday - Hopefully I'll be hoping an evening flight to Logan Airport in Boston, MA and then to my hotel.
Well, it's going to be a busy week, but a typical one for us. LOL
Take Care and God Bless,
Renee
Tuesday, November 25, 2003 8:18 AM CST
I had an entire entry all ready to send and it was lost.
My heart and soul are very heavy today. Tommy Bennet lost his battle with the complications of transplant. I had had such high hopes that Tommy would be the exception to the rule. He and his family have been such and inspiration to me and yet there is nothing I can do for them.
My children stand before me each and every day. Sometimes it is happily, sometimes sadly, sometimes angerily, sometimes inquisitivily, but none-the-less, they are standing before me. It is so hard to believe that Nettie has had several DNR's (Do Not Rescusitate) in her life. Joshua was given a 30 r less chance of surviving his cancer or the treatment used to kill the tumor. Tray was doing so poorly that they felt the only option he had was a transplant and his foster mom had made it clear that she did not agree with that so he was going to be let go. For reasons beyond my grasp and to my utter amazement and joy, my children have ALL proven modern medicine wrong. I don't know how or why. I wish I had a small insight into God's grand plan. What it is that we are moving towards. But Peter offered an explanation the other night that helped to shed some light on it for me. He said "Renee, we are all given one paragraph to read, that is what we live our life according to, God is the author of the whole book and he knows how that one paragraph fits into the story." I guess these web pages are in a sense, a part of different paragraphs as they are being read and lived around the world. I hope my paragraph is helping others as they live their role in their part of "The Story". God is the ultimate author and therefore each of these sad events in life must make sense at the end of the book.
Please pray for those that have recently lost their precious children.
http://caringbridge.org/ca/bennettboys/
http://www.caringbridge.org/page/christina/
http://www.caringbridge.org/mn/noahjay/index.htm
http://caringbridge.org/ny/connors_page/index.htm
http://www.caringbridge.com/pa/colby/
http://www.caringbridge.org/page/anthonym/
http://www.mighty-max.com/updates.html
Max is still of this world, but as his parents have feared, it may only be his body that is here and his spirit has been trying to fly free. They are now faced with some awful decisions. I know, we have been asked to make these decisions before, but Annette has always guided us and has never been so sick as to blur the line between yes and no. These parents are trying to make decisions while their son is unable to speak to answer them. May God grant them peace and serenity as they move towards their life without their baby.
As for us, despite my current state of sadness, all is well. Still making plans for picking up our other miracle child, Marriela and anxiously await the word to buy my plane ticket.
Joshua was seen by the pediatrician yesterday as a follow-up on his ear infection. He is now coughing again and has nasal congestion. She said his ears and lungs are clear and look great, but his sinuses are "slimey and very swollen". So he is now on a nasal steriod, Flonase, to see if we can control the swelling and reduce the chance of infection.
Nettie is still coughing and will need to see the doctor in the next day or two I fear if she doesn't turn the corner here soon. She feels fine otherwise so we'll wait it out a bit longer.
Tray is STILL EATING, but has also grown UP as well as OUT. So he is obviously having a growth spurt. I sent a LARGE box of Goldfish to school today (not the swimming kind, the cracker kind LOL) for his snack time and his end of the day "I'm-hungry-as-hell-and-can't-wait-until-I-get-home" snack that he has each day (he eats behind a wall so the kids can't see him!!). He is to funny!
Here is a Thanksgiving Prayer for my internet friends and "family".
Dear Lord,
Please watch over those that come to this page to offer their love and support. May they have the food they need to live, the love they need to love, the home they need to be safe and the friends they need to laugh. I am eternily thankful for my husband of 10 years and my beautiful children, both present and future. May God shine his love down upon all those suffering losses and may they feel Peace in their hearts.
Amen
Take Care, God Bless and Happy Thanksgiving!
Renee
Friday, November 21, 2003 3:31 pm EST
http://caringbridge.org/ca/bennettboys/
I beg all of you who visit us, to stop by and see this young boy. Tommy has been through 3 transplants, trying to save his body from the ravages of a terrible disease called Sanfillipo Syndrome. He is now in critical condition from the effects of 3 transplants. He and his family need some prayers! I know I'm praying for him. Tommy is an amazing child! He also has a brother and sister who have the same syndrome and are severly disabled. This family needs us.
Thank you!!!!!
Renee
I just wanted everyone to know, I HAVE CHANGED THE NAME OF THIS PAGE!!!!! MARRIELA IS COMING!!!!!
If all goes according to plan, I should be flying out to get her on the 8th of December, exactly 4 months to the day we met her. I am in shock that it is now all starting to fall into place. I worked on it all day yesterday and made MANY phone calls. But all of a sudden, all obstacles seemed to just fall away and the clearance was given. Now I just have to work with our local social worker to get our paperwork updated and sent out ASAP to the powers that be and the homecoming can commence. Thank you God for your wonderful hand in all of this.
Joshua's seizure med, Trileptal was increased to 600mg at night time. That is double the dose he has been getting (300mg three times a day). Since it can make you tired and Joshua already is more tired than the average child, we felt that trying the increase just at bedtime would be the best option. If we don't get control of them using this method then he will go inpatient for 24 hrs to get a 24 hour EEG done. But I think he's just had a growth spurt and the increase will work.
Nettie is still working on her cold, but hopefully she's turning the corner any day now (I need them all healthy before Marriela gets here! LOL).
Just wanted to add a quick update to let you know the great news.
Take Care and God Bless,
Renee
Tuesday November 18, 2003
Hi everyone!!
Well, the food marathon continues with Trayvon! It seems each time I make a mild reduction in the calories the other two are eating, he makes up for it by eating double that amount!! Last night he ate 2 whole hamburgers on potatoe bread (you know, that when you make them at home, hamburgers are MUCH bigger) and then asked for goldfish for a SNACK!!! Peter didn't even eat 2 WHOLE hamburgers! LOL I was laughing so hard this morning because he woke up and the very first thing out of his mouth was "It's a good spagehtti night, I want spagehetti for dinner." Where did this kid come from! LOL So spagehetti it will be tonight.
Joshua has been a little "off". He has been sleeping a lot more and complaining of back pain. He needed a heating pack last night to go to sleep and this morning he used the heating pack while he finished his homework. I don't know what that's all about. I do however, know that the need for growth hormone, at least at this time is NEGATIVE!! I had measured him (as per the endocrinologists orders) 3 weeks ago following our appointment at the hospital. I am suppose to measure him in exactly 3 months at the same spot and then call her with the difference. Well, in only 3 weeks, he has grown 1 inch. That is more than he grew in over 12 months!!! This could mean that puberty has in fact arrived, which would mean monthly shots to stop it. Or he could just be doing a normal "growth" spurt and thus the extra sleeping. It is so hard to just "wait and see" with Joshua because little things can be big things and the big things can actually turn out to be quite little. He is my constant mystery man. He continues to do very well on his food plan and I continue to be sooooo proud of both him and Annette and all of the good work they are doing to learn what foods are "good" and which ones are "not so good".
Nettie has developed a chest cold. We started the nebulizers again and since she just got her IVIG she should be able to get over this bump pretty well. She saw the Rehab Doctor yesterday who approved our request for a letter to justify a power wheelchair for Nettie. They are going to work on Medicaid to get it covered. The PT and Doctor also determined that Annette has made remarkable progress in developing the muscles of her calves and ankles and now want to start on her outter and inner thighs (Nettie uses a machine called "electrical stimulation". Many people have used it before in PT or a chiropractors office. It is small electrodes that are placed over a specific muscle group and attached to a power pack. The pack delivers a constant or intermittant Pulse of electricity to the muscle group to stimulate it. Nettie uses the e-stim while she is doing some sort of physical excersice - walking, PT, gym, etc. - so the muscle group gets worked out both passively and actively.)
With the e-stim, over the past 18 months she has gone from not being able to move her foot AT ALL independently, to being able to move her ankle both up AND down. This is incredible, because she has no achilles tendon!! ALL of the major tendons in Nettie's legs have been cut or lengthened to allow her legs to straighten out. Hamstrings, inner thighs, outter thighs, achilles tendons and hips are all "released". So to make her body do things that relied upon a group of muscles that no longer work is amazing. What actually happened is that the e-stim just triggered another muscle group to take up the slack where the cut ones left off. So now we can't wait until we get our new electrodes and start working on the next group of muscles!! Annette's big motivation now to work hard is that she wants to dance "hip hop" and practices ALL the time in her room. She wants to be able to "shake her booty" like the girls on MTV. So the therapist is going to put the e-stim on her booty and Nettie is going to work hard to "shake that booty"!! LOL
I did find out that our local agency now has Marriela's contract and I anxiously await a phone call today from our caseworker to find out when they are coming to do our update. So maybe, just maybe, there is light at the end of this tunnel after all!!
Take Care and God Bless,
Renee
Friday, November 14, 2003 10:29 AM CST
Hi everyone,
Thought I should drop a new update real quick.
First the amazing news: TRAY HAS GAINED 3 1/2 POUNDS IN JUST 3 WEEKS!!!!! Before you think, well that can't be good, or, it must be fluid weight. . . NOPE!! He has been eating us out of house and home. LOL First question when he wakes up is "What's for breakfast?" followed closely by "What's for lunch and snack?" and not long after that, he wants a full run down on the dinner menu for the day. He ate a WHOLE pack of salami in just 3 days (I didn't know it until I went to make myself a sandwich and Tray told me I needed to buy him some more "ham"). Hmmmmmm. So needless to say, we are thrilled that he now wants to eat, but overwhelmed by his constant demand for food. I think he's going through a major growth spurt and hopefully he won't be eating like this the rest of his life (can't afford it LOL).
Nettie had her IVIG yesterday with no problems. She gained only .8 kilos (the smallest amount of weight gain she has ever had in over 18 months)! So her new "food plan" is working for her. Next month I would expect that she has begun to lose weight as long as she sticks with me on this plan.
Joshua on the other hand has lost 3 pounds on his "food plan"! He doesn't have to lose a lot, but he could use a little, as well as eating better. I am soooo proud of both of them for working with me on this with virtually no grief!!! He also saw the pulmonologist's nurse practitioner. She felt that he definately does NOT have asthma. His lower airways are perfect, however, his upper airways are mildly obstructed. Since he is still on the antibiotic for the sinus infection, we are going to go back on the 5th of December for repeat PFT's and to see what his lungs look like off of the antibiotics. The next time he has a respitory infection he is to start the Xopenex via nebulizer immediately. However, if after 2 days he isn't A LOT better, she is going to do a five day course of steriods to see if we can reduce the amount of inflammation in the lungs. Ughhh, steriods will weaken his immune system even further, but the inflammation traps the infection in so it can't clear. Catch 22.
Still waiting on word about Marriela. I am sooo FRUSTRATED with this whole process!!!!! I just don't understand why it is taking so long. It's completely unexcusable. It really is.
Well, gotta go and get some Christmas shopping done!
Take Care and God Bless,
Renee
Monday, November 10, 2003 8:24 AM CST
********* MORE NEW PICTURES ***********
Hi everyone,
Getting ready to take Joshua to see the pulmonologist. So I thought I'd load a few new pics for you to check out!!
Tray had a great time at his Superhero birthday party. The kids made their own superhero masks and capes (can't be a superhero without those!!) and even decorated their own superhero cupcakes. We had superhero "special skill" contests and relay races. Tray had a great time!!
Happy Birthday Little Superhero!!!!!
Nettie went to girlscouts last night and made fleece hats. They are SOOO cool!! She donated one and was able to keep one. Perfect timing too, because last night the tempurature went down to 10 DEGREES!!!
Peter and I went out last night for his company night at the local Toy's R Us store. We had saved up some Christmas cash and got some breaks on kids stuff. We also WON A BIKE in the door prize raffle!!!!! CAN YOU BELIVE THAT!!! It is the perfect size for Trayvon in the Spring!! We also got Marriela a few things and can't wait for her to be here to open them Christmas morning!!!
Well, that's it for now.
Take Care and God Bless,
Renee
Monday, November 3, 2003 9:01 AM CST
********ADDED NEW (OLD) PICTURES*********
November 6, 2003
Hi everyone!
Tomorrow is my baby's 5th birthday!!! I can't believe he is going to be five already!! He is getting so smart too. His observation skills and his ability to call my every move into question is enough to make me laugh and scream at the same time! LOL He now asks questions as to "Why are we waiting until 'such and such' time for dinner, I'm hungery NOW!" Or, "If I do this, will you do that???" and if he doesn't like the answer, the negotiations begin! But. . . he is doing wonderful, he has enormous amount of spunk and he is turning 5. All remarkable acheivements for a remarkable little boy. We love you Tray!!
Joshua continues to improve on the antibiotic and goes back to the doctor for a follow-up appointment. On Monday we will be going to the pulmonologist for the first PFT's he's needed in over a year. Then we will know whether he needs the daily nebs, or just "as needed" of if he needs to start the steriod inhalers as well.
Nettie is doing great as well. She has a cold that is trying hard to work it's way into her lungs, but she is working hard on coughing and doing her breathing treatments, so I think we will win this one!
Gotta go and prepare a SUPERHERO party!! LOL
Take Care and God Bless,
Renee
Hi everyone!!
We hope you had a safe and happy Halloween!
We had a fun weekend, though no weekend would be complete without a bit of excitement. . .come on, you know it's true. LOL
Saturday the weather was not nearly as nice as Friday so we couldn't really enjoy the outdoors to much. Joshua had his first basketball practice. He did well, but was VERY tired afterwords. Tray had Jui-Justu which he did very well at, except with the "boxing" component. He complained that the gloves were to heavy (they need to make itty bitty boxing gloves for kids with itty bitty hands!). Nettie hung out with us and then came home and soaked her tired bones in a nice warm tub for about 1 1/2 hours!!! I had completely forgotten she was in there and she never thought to call out and tell me she was ready to get out. Silly girl. LOL Later that day their cousin (same age as Joshua) came over and spent the night.
I went to fill the prescription for Joshua's ear infections on Saturday and the pharmacy informed me that he was terminated from his policy on the 31st. UGHHHH!! I could't get the medicine at all. I actually just got off the phone and it is being reinstated right now as we speak. The lady is going to call me back when it is all set and I can use it. I'll just have to bring the medicine to the school to start it.
Sunday we went to church where Joshua recieved his first bible. In our church, all 3rd graders receive their bible in a small ceremony as a group. He was as proud as a peacock afterwards and walked around with it tucked under his arm with his chest sticking out!! It was a riot. Most of the other kids were like, cool, but Joshua was like, COOOOOOOLL! Then we took them to see the movie Brother Bear. It was an AWESOME movie!!! Sadly, even though he was so enjoying it, Joshua wasn't able to stay awake for more than half of it. I was so sad that he missed something he was really enjoying. He seemed fine with it once we let him play some video games, but then he had a major meltdown when we told him we weren't buying him a $40.00 ps2 game! He sobbed so hard for almost 1/2 an hour. I know he wasn't feeling well, but sometimes I don't think HE knows he doesn't feel well. That evening from 4-8p Nettie had confirmation class at church (she is never thrilled about this! LOL).
I also took the time yesterday to send an e-mail off to the doctor at NIH regarding Joshua. I have posted the responses I have recieved from the two doctors I have contacted thus far. He actually wrote back to me within the hour of my sending the e-mail!! Can you believe that! I can't. I still don't know who we may end up seeing since each doctor seems to have "someone in mind that maybe able to help us". So I'm just hanging tight to see what happens.
************************************************************
These are in response to an e-mail containing a brief overview of Joshua's medical history:
THis course is not typical. I am sorry this has been so trying. I would like to refer you to someone at the NIH. There are multiple other immune deficiencies that manifest themselves with staph infections etc that willl not show up on a simple test of cbc and t cell panel. e.g. Chronic granulomatous disease, LAD deficiency etc. I think he needs an immunologist to take a look at him. RIght now I dont know who to send him to. THe guy I talk to at the NIH is a Dr. Steven Holland who does granulocyte abnormalities including CGD. YOu might look him up or call for an appointment. The number I have for him is 301-402-7684. Second opinions are always a good thing. Your doctors should not feel threatened by that. You will need a complete copy of his medical record prior to the visit with all of the culture information to make the visit the most reliable and useful. I can also take your email and send it to him and see what he says e.g. who should you get referred to. I makes sense that you have exhausted the help and evaluation that has been done up there and now you need another set of eyes to look at your child. Maybe restarting IVIG may help even if the numbers indicate that he doesnt need it.
Let me know
Nat
(Natalie Neu, MD. professor of Infectious Diseases at Columbia Presbyterian Hospital in NYC)
_____________________________________________________________________________
Sounds like an immune deficiency to me. The PNET rings a bell as well, but
you need a good immune workup for this. I woujld suggest Charlotte
Cunningham-Rundles at Mt. Sinai there in NYC as the best one to see. She is
excellent and local and well plugged in to the immunodeficiency community. I
will look into this further, but I agree with you that there is something
going on.
Steve Holland, MD (Immunologist from NIH)
*********************************************************
I also called on Marriela again, as it has been more than 2 weeks since they told me, "I should only be a week or less until you hear from your agency." I went straight to the supervisor this time and she will call me back later today or tomorrow with an update. I am soooo frustrated with this entire experience. :-( I can't wait for my baby to join us.
Well, that's it for now. I'll try to put in some new pictures, so check out the photo album in the next day or two.
If you have a moment, take a minute and stop by these kids sites and give them some encouragement. . . great kids, facing great odds.
http://caringbridge.org/ca/bennettboys/
http://www.caringbridge.org/page/christina/
http://www.caringbridge.org/fl/katia_leukemiapage/
Take care and God Bless,
Renee
Friday, October 31, 2003 1:50 PM CST
Hi everyone!
HAPPY, HAPPY HALLOWEEN!!!!
Kids are psyched up for their trick or treating advetures tonight! Nettie is a cheerleader, Tray is Eeyore and Joshua is a boxer (with a very nice black eye if I say so myself).
We just got back from the doctor. Nettie and Tray, much to their suprise as well as dismay, got their flu shots. Nettie relaxed, and breathed through it and was SHOCKED at how just little it really did hurt! I was soooo proud of her. Tray on the other hand got so upset that after it was over he threw up everything he had eaten for the day. But less than 5 minutes later he had fully recovered and is doing just fine.
Joshua was seen today for his lung congestion. Of course, the proverbial toothache, he was clear as a bell. However, he has an ear infection. So back on antibiotics he goes. The pediatrician, after talking at length with the immunology doctors here, has come to the conclusion that she wants him to have a second opinion (I hadn't even told her yet that I was arranging one!). She is also going to call the doctor in NYC that may be able to help Annette with her Lipodystrophy. Hopefully all will start moving along in these areas.
The weather here is just AMAZING! The kids are outside in short sleeve shirts eating their lunches. I am going to get out our new blower and start cleaning up the leaves that have taken over our house.
Have a safe and Happy Halloween!
Renee
Monday, October 27, 2003 11:08 AM CST
October 30, 2003
Just thought I'd drop a few lines before going out and fetching Halloween Costumes. Joshua is going to be a boxer (actually, he just wants to have a fake black eye, so I'm just building a costume around that concept), Nettie is going to be a cheerleader (even though she thinks the skirt I picked out looks like a "girl scout" skirt - don't ask where that's coming from??) and Trayvon is going to be Eeyore. I think he was Eeyore last year as well, but he LOVES the hair on the tail and around the face, so that is what he wants. No, actually, I just remembered, Tray was Bozo the clown last year. Phew. I would hate to repeat a costume two years in a row. LOL
Joshua continues to struggle with lung congestion and shortness of breath even with the nebulizer treatments. Even Nettie's nurse was suprised at how "coarse" his lung sounds are even after a treatment. So now we have to add the Pulmicort (an inhaled steriod) to see if that helps to improve anything. I contacted a doctor friend in NYC and she recommended a second opionin from NIH. She thinks he may have an immune disorder that can't be tested by most labs in the US. So she is forwarding my e-mail to her onto him and I will call for an appointment. IF he were in NYC, she would start him back on the IVIG immediately. Scary how different doctors think in the same field. Like the old adage says, ask for 5 opinions and you'll 6 different ones. Who knows who is right. All I know is that this is NOT normal for my child. So I will forge ahead some more (hey, it's been a 4 year uphill battle to begin with, no sense in stopping until we win the war).
Nettie is doing well and just brought home an A on a Social Studies unit!! She actually knows about the Fertile Crescent, Mesatopia, the cunniform system, etc.!!! Amazing! This is the same child that didn't talk until she was 4 1/2, sit until she was 5, toilet train until she was 8, eat solid food until she was almost 10 or write her own name until she was 10 years old!! Now she is taking the same tests as the 6th graders and doing better than many of them. I am truly amazed at God's handiwork. Nettie is a walking, talking, miracle in progress.
Trayvon is doing SO MUCH better in school. He is still VERY stubborn, but they are learning how to "trick" him out of his stubborn streaks. He loves to be a helper, so if he looks like a melt down is about to happen, they magically find something for him to "help" with and POOF, melt down just melts away. He is eating better and has found a new love in life. . .CHEESE. This child is going to deplete the cheese supply in Livepool, NY single handedly! I have had to stop him from his 5 or 6th pc so he doesn't get all constipated! LOL He now takes those "cheese sticks" to school for snack instead of Goldfish. Calcium is not a concern for Trayvon. :-)
Peter had several moles removed the other day and had a cortisone shot in his elbow. Now, here is a note to all those out there that may get a cortisone shot anywhere on their body. If the doctor says to ICE THE SPOT, THEN ICE THE SPOT!! Peter's arm swelled up like a balloon and he was in mind boogeling pain for almost 16 hours. Needless to say, lesson learned, follow the doctors advice. He is also enrolling back into college and needs to submit his immunization records. Well, as a child, he didn't recieve all of his immunizations (he actually had the mumps and measels) and the shots he recieved as an adult (to get into college or to work) were done at health clinics, we have no documentaion of their existence. So at his last physical he had boosters done. But for enrollment into a college you have to prove you have had 2 MMRs. So now he has to go back to get a 2nd one, even though he has had several in his life time, not to mention the fact that he HAD THE MEASELS! Go figure. He has just been a human pin cushion the last 2 weeks. Better him than the kids though (and more importantly, better him than ME!!)LOL
Well, gotta go get some costumes.
Take care and God Bless,
Renee
*****NEW PICTURES NEW PICTURES NEW PICTURES*******
Hi everyone,
I am so NOT computer literate. I have just taken 3 hours trying to figure out how to load pictures of the boys earing their yellow belts in Jui-Jitsu yesterday. In the end, I was unsuccessful at getting them onto the front page, but they are in the PHOTO SECTION!! Both boys did a great job and we were very proud of them. Peter also earned a belt (actually he did so well, he skipped a belt and went straight to an orange one!) but the boys were so tired and I still needed to finish Nettie's braids before Girl Scouts, so we couldn't stay. I am still very proud of all 3 of my boys.
We had a nice weekend and spent time with Peter's sister and her husband and the kids. We took them to our town's Halloween Party and then that evening we went on a Historical Haunted Hay Ride. (May have been "historical", but it sure wasn't "haunted". LOL)
Still no further word on Marriela.
Nettie goes to see the pulmonologist today, but that is no big deal.
I think I updated you on Joshua's endocrine appointment. I'll check the journal history and if it turns out that I didn't, then I'll come back and do it later today.
Tray is doing well also. We don't have any appointment for Tray in the near future. Yeah!
Well, that's it for now.
Take Care and God Bless,
Renee
Tuesday, October 21, 2003 10:57 AM CDT
OCTOBER 24, 2003
Nettie had her appointment with the orthopedic surgeon regarding her back. He is sure that there is no scoliosis but is worried about how she always slumps to one side. So she will have a full set of spine x-rays next month when she gets her IVIG.
Tray saw our new pediatrician for the first time today. She was very interested in his diagnosis and told me she has "stacks and stacks of info that she has pulled on the different things the kids have wrong with them!" She has her before-bed-reading cut out for her for a while I think! LOL She is going to call the Cardiologist to get a formal as well as "informal" sense of where Tray is from a heart stand point. I told her, I have no concerns at this time with Tray, he is my most stable right now. :-) YEAH FOR TRAY!!
Joshua saw the endocrinologist today as well. He growth hormone level has gone up into the normal range. However, the x-ray of his hand to determine his "bone-age" was not read yet by the clinic. It is possible that he is in precocious puberty and that is what bumped up his GH. If his bone age is less than his chronological age, then that is what is the cause of the increase. If it is normal for his age, then we will just keep checking him every 6-12 months with lab work to be sure all continues to be normal. It always seems that we have to wait on something for Joshua. He is a constant puzzle. :-)
Well, that is it for our day today!
Oh yeah, I left the office today without getting the kids their flu shots. So Joshua got his at his appointment, but now Tray will have to go back to the doc. and Nettie will get hers when she gets her IVIG in a couple of weeks.
Silly mommy.
Take Care and God Bless,
Renee
It won't be long now before I get to change our Title to MY4ANGELS!!!! I talked to Marriela's social worker and she gave me a wonderful update on our daughter. We last saw Marriela on 8-7-03 the day before she turned one year old. She was 14lbs, no teeth, unable to sit independently, made minimal sounds and was still on a special formula called Neosure. Just shy of 3 months later: Marriela has 2(with a third on the way)teeth on the bottom! She is now eating Stage 3 baby foods and drinking whole milk (NO formula!). She can now sit all by herself and she says "dadadadad". She doesn't like to crawl, instead, she rolls around the room to get what she wants and she can clap her hands together as well. What a huge change!! She has also been very healthy and we are so thankful that she is doing so good. The caseworker assures me that they now have a subcontracting agency in MA and we should be moving along relatively quickly here. I am definately hoping that this will all be over before Thanksgiving! What a wonderful thing to give thanks for.
The kids are all doing very well. Joshua saw the dentist and all is still well, though he now has to brush his teeth every day after lunch as well. His gum is still very "spongy" where the infection was so she is worried that a new infection is trying to come through. Tray sees the new pediatrician on Friday, Joshua sees the endocronoligist on Friday and Nettie sees the orthopedic surgeon on Friday as well. LOL It's a day off from school and I have them just as busy as if they were in school. They are not going to be happy with me on Friday. Not to mention, that if the flu shots are in that day, (since all the kids are with me. . .) they will all get them Friday morning! Oh, my poor ears. :-)
Other than that, all is well here.
Take Care and God Bless,
Renee
Thursday, October 16, 2003 9:18 PM CDT
Hi everyone!
Well, Nettie had her IVIG and, again, it was very uneventful. LOL I had "THE" meeting with the infectious disease docs regarding Joshua. The Dr. was very kind and took all the time I needed to answer all of my questions. For this I was very thankful. All in all, it was a good meeting. Joshua now has a perfectly normal immune system on paper. For this I am eternally grateful. Really, I am. However, I shared concerns with all of Joshua's infections and the need for repeat high dose antibiotics. Their take on the situation is this. . . Joshua's immune system post transplant was like that of a new born baby. He had a difficult time, for one reason or another, re-building his immunity to normal pathogens in our lives. Thus the need to do the IVIG for the 8 months like we did. However, those eight months were like when an infant has passive immunity due to mom's antibodies. He was recieving
DONATED antibodies to prevent him from getting ill. Now he has the immune system like that of a young toddler. He now has the ABILITY to fight infections, he just doesn't have any exposure to them yet. Remember, an 8 month old normally isn't in school and exposed to all of the things Joshua is, so he is really doing a great job of making his immune system work. The doctor's told me to brace for a difficult winter and that they would definately work with the pediatrician to be more aggressive with infections and carefully rotate the different antibiotic classes so as to try and prevent any significant immunity to them. I am very sad at the news that Joshua will continue to suffer this winter. I am happy that he now has an immune system to "teach" but it will be very hard watching him go through all of this all over again. The doctor's did try to reassuure me though, that as he catches each bug, he IS building an immunity to it for the next time, so in theory, next winter should just be a typical winter (no different than the "average" child), but in our house, nothing is average. LOL
Tray meets the new pediatrician next week on Friday, on the same day, Nettie will have a repeat scoliosis check and a full set of spine x-rays, and on the SAME day, Joshua has an appointment with the KNOT clinic nurse to go over his growth hormone results. So we have a busy day that day!
Tray has been dealing with a stuffy nose, and he is quite a bit more tired than usual, but otherwise, doing very well. We had been hoping for a bit more weight gain, but today's weigh in showed that he has stayed at exactly 40 lbs still!!! He needs to be OVER 40 to get out of the booster seat on the bus! LOL So this is our goal for the next month or so, getting Tray over the magic number 40 (he hates the bus booster seat).
Well, that is it for now.
Take Care and God Bless,
Renee
Tuesday, October 14, 2003 6:28 PM CDT
Hi there,
Well, Joshua and Nettie had busy days today! Today was the first day they saw their new pediatrician, Dr. Jones. She was a resident when Joshua was in for his chemo and she had also cared for Nettie several times when she was in for pneumonias. So when I stumbled upon her practice when we were at Nettie's orthopedic surgeon, I was ecstatic that we may have finally found a dr. that will fight for my kids!!
She was blown away when she saw Joshua (remember, she saw him when he was only 2 years old, bald and sick as a dog from chemo!). That was almost 6 years ago so he looks a bit different and he is "bit" bigger. LOL
I expressed my concerns regarding his infection rate and the lack of interest his ID doc seems to have in his case. She was very upset that Joshua was assigned to the Fellow ID doc instead of an attending, so SHE is going to request that he be switched to an attendings caseload. I have no idea how that idea is going to float with the ID docs but, hey! I didn't ask for the change, SHE did! I just happen to agree with her. :-) She is also going to refer us to Strong Memorial Hospital for neurology follow-up. No one has ever suggested this to us before and his insurance will cover this doctor (we pay the $300 office visit and the travel expenses to see his doc in NJ). She is also going to ask for ALL of the labs for ALL 3 kids from the past 6 months (she has NO idea how many labs that is!!!). Then she is going to call the KNOT clinic and follow-up on his growth hormone issues and try and find out what is happening with that.
Ok, onto Nettie. Again, I expressed my concerns regarding her ever expanding waist and "boobies". She was very understanding and agreed with us that she should at minimum have the labs drawn to see what (if any) discrepencies may be present. If there are some problems, then she will make a personal referral to the endocrinology dept. at Strong Memorial for Nettie. She is also going to call cardiology and have her seen as soon as possible for a complete cardiac work-up. She was also concerned with her spine and asked the orthopedic surgeon (remember, he shares the same office now!) if he could re-evaluate her spine and then send her for a full set of spine x-rays.
Tray goes to see her next week, but he really is pretty set. He has an excellent cardiologist and his GI problems are doing well with Dr. Karjoo's input. So she will be releived to know that she will have no referrals to make for my baby. LOL She will however, have to deal with his screaming when she goes to check out his ears! :-)
After the pediatrician, we went to the eye doctor. Nettie's eyes are perfectly stable and her perscription will stay exactly the same for another year. YEAH NETTIE!
Joshua did well with his exam, he tried very hard to do a visual field test (to check his peripheral vision), but he had a very hard time remembering to "look only at the dot in the middle". He kept looking for the light so that he would do well on the test. The doctor did find a mild cataract in his right and eye and the beginnings of another in his left eye. Again, we were told this would probably happen due to his radiation treatments, but none-the-less, I was saddened to hear of the newest complication he has developed. He doesn't have to go back for a whole year, but if he has any problems seeing between now and then, we are to call and make an earlier appointment.
And finally, Nettie just walked in the door from her new "support" group. It is a group of adolescents who are all transracially adopted. She apparently had a GREAT time and can't wait until next week already. I am so happy she liked it.
Well, that was today. I will be going to an inservice tomorrow for my new job (oh yeah, I'll have to update you on that someday). On Thursday Nettie has IVIG all day and I will be meeting with the ID doctor (I think) regarding Joshua's immunology studies. That should be interesting to say the least. LOL
Take Care and God Bless,
Renee
Saturday, October 11, 2003 11:10 AM CDT
Hi everyone,
Since we won't be able to update for the next few days due to a server change, I figured I'd just say hi now. :-)
All is going well. Joshua's infection is clearing up nicely. He will be done with the antibiotics next Wed. which he is very thankful for (it tastes AWFUL!). I will be meeting with the Immunology doctor on Thursday to officially go over the results, but I really have nothing left to say to them. I have e-mailed a doctor in NYC that may or may not have some ideas.
There is something new though for Joshua. The other night in bed as he was sleeping, I noticed that his scar that is low down on his belly (from his kidney surgery as an infant) looked really stretched out and his belly looked much larger than normal. He is a larger child and has a nice soft belly. When I felt his belly it was hard and has some "lumpiness" to it. I think he has a hernia where the old scar is. We were told that may happen, but after 8 years you tend to forget things until they happen. So now he sees the new pediatrician on Tuesday and we will have to have that evaluated. In addition, he has developed a very juicy and persistant cough. He is already on high dose antibiotics so it probaby is not an infection. So I don't know what would be making him get congested and hoarse. Again, just one more thing to figure out for our little mystery man. LOL
Tray and Joshua will be going for their belt tests in Jui-Jitsu in 2 weeks. They have been working hard in class and at home to get ready to earn their yellow belts. I am so proud of both of them!
Nettie is off with her nurse today for a "girl's day" out. She is seeing the new movie "School of Rock". She was soooo excited to be allowed to see a PG-13 (remember, she is almost 14!) movie. She also was given $20 to spend any way she wants, I may regret that when I see what she buys. LOL
We are taking the boys to the pumpkin farm today to go on a hay ride. It is beautiful out and I want to soak it up while the weather is still nice. Tomorrow it is suppose to rain, but we are going to a "kids" haunted house anyways after church.
Well, that's it for now!
Take care and see you when the new server is up and running!!
Renee
Wednesday, October 8, 2003 4:40 PM CDT
Hi everyone,
Well, Joshua just had his follow-up appointment with the surgeon for his post-op infection. He thought it looked much better, but was very surprised that he had an infection at all. I am not.
Out of frustration with these infections and the fact that we are being constantly "appeased" by the immunology doctors, Peter sent an e-mail to the doctor expressing our concern for our son. As I had anticipated, she was usless. On a good note, Joshua's lab results apparently have shown a nice improvement. He apparently has a "normal" immune system on paper. Yet. . . he is still chronically sick. In less than four months, Joshua has had 3 major infections, is chronically (an at times, severely) fatigued and he hasn't run a fever with ANY infection (no matter how big) in almost 2 years. That to me, does not indicate a normal immune system. But, as is so often the case, the doctors rely so heavily upon information given by a textbook or computer, rather than looking at the patient and seeing how they are doing. Any doctor who looks at Joshua, would easily see something is amiss. Alas, that is not the case and we continue to wait and see just what is around the next corner for Joshua.
Nettie and Tray are doing very well. Tray is stilling having some difficulties in school, but not nearly as many as in the beginning. So we are going to just leave his school day as it is for now. Nettie is still doing great with the 6th grade curriculum and just got a B+ on her first Social Studies project!!
Both Nettie and Joshua have been approved by a local agency to recieve an assistive technology evaluation. Both need some help with writing as this is a very difficult task for both kids.
Well, that is it for now.
Take Care and God Bless,
Renee
Sunday, October 5, 2003 2:19 PM CDT
*****************Update****************
Hi there,
Well, Joshua has seen the surgeon and yes, he has a bad infection (see photo) at the upper insicion site. He is now a huge dose of oral antibiotics to see if we can get it to clear up without having to go back in the hospital for it to be cleaned out surgically and for IV antibiotics. He has 2 days to show a big improvement. But to look at him, you'd never know he was sick!! I actually took him straight to school because he just doesn't act sick when most kids would be home with high fever, and extreme pain. We'll see what happens.
This is Joshua's incision site last night, it looked even worse by morning. Sorry for being so gross. LOL
Hi everyone,
Sorry, I was going to just "add" this update to the last one but forgot and hit the NEW journal entry instead by mistake. That makes sense to all the caringbridge users out there. LOL We went to Six Flags, Darian Lake in Rochester, NY this weekend. It was very nice but, VERY COLD!!! The kids were really enjoying themselves after we spent a fortune on gloves, hats and ponchos when we got there. Nettie had mentioned a couple of times that her feet were cold so we took them upto the hotel room before dinner, so they could warm up a bit. Dinner was by the "lake" and was quite bitter so I wrapped a blanket around Nettie's legs and a quilt around ther shoulders. She was all toasty after that. I also thought that it might be best if we take the stroller back to the park with us after dinner with an extra quilt. Peter thought we wouldn't need it, as Joshua and Tray both seemed to have so much energy at the time of dinner. Only an hour later, Tray had already had several "rides" in the stroller because he was tired and not long after that, Joshua was crying because his "legs hurt and were tired". We wanted them to see the laser show so we had to kill some time while waiting, which we did in a quite little restaurant were we ordered 4 hot chocolates and a burger (for Peter, because he didn't eat enough dinner lol). $25.00 later, (some vere expensive hot chocolate apparently, though not particurally hot) it was very clear that Joshua was not only going to need the stroller for transportation, but was going never going to make it through the laser show awake. He officially fell asleep 1 minute into the show (I think he saw one laser light and one firework) before sleep overcame him. At this point Peter looks over and says "Good call on the stoller, honey." Knowing full well that without the stroller here, he would be carrying our 103lb son a 1/4 of a mile to the hotel on his back, because once asleep, NOTHING can keep Joshua awake!! Tray and Nettie both loved the show (though Tray's little body jumped each and every time a firework went off). When we got back to the room, I started undressing the kids, Nettie commented again that her feet were cold. NOW, when I say my feet are cold, they are to me, but most others wouldn't necessarily say "oh yes, those are some cold feet.", but poor Annette's feet were soooooooo cold that I could even hold onto them. I was so worried that she might have some frostbite because she said they didn't hurt, but were just cold, that I quickly filled the hotel garbage can with warm water and put her feet in it to warm them up.
Oh, yeah, I need to back up about 20 minutes here.
When we finished with the laser show, we stopped in the lobby to say hi to some of Peter's co-workers and to get a hot chocolate. Tray asked for some water so I happily gave him a cup of cold water. One second after taking his first sip, he coughed, which anyone who knows Tray, means an upchuck is an unavoidable event in the near future. I put his cup under his mouth and thought - "good job Renee, you got it all and no mess" - but alas, he had MUCH MORE in his stomach than I had anticipated, so after trying, to no avail, to "catch" it in my gloves I begin shoving my puking child across the hall to the bathroom as his last 3 meals drip down his chin, jacket, my hands, over the rim of the cup and into the bathroom where he announces happily that he is "all done, but I need to pee".
Now back to Nettie's feet. After a few moments in the water and a quick check to be sure nothing needed amputation, I felt a bit better that we had saved her feet.
Needless to say we all slept well. Until 7:00 am when Nettie and Joshua both awoke with nasty cases of the croup and nice juicy coughs. In addition, Joshua's upper surgical incision (the one where they had to fish out the broken catheter) looks nasty and it hurts to push on it. So off to the doctor tomorrow we will probably have to go.
We had a nice trip home, though it is pouring out right now. Annette and Peter are taking a nap and Joshua and Tray are sitting here watching Blues Clues with me. Both look wiped out so hopefully they will go down early tonight for bed. Annette still has a 4 hour confirmation class that goes from 4:30 - 8:30 tonight.
Take Care and God Bless!
Renee
Friday, October 3, 2003 7:56 PM CDT
Hi everyone,
I know I told you that today was the big day that we got all of his results, well, I was wrong. I called yesterday to see if all of the results were even in yet and. . . of course, they weren't. So I cancelled the appointment and will get the results on the 16th when I will be in clinic with Nettie for her IVIG. This way I don't have to take Joshua out of school, just to get results.
Joshua is doing well since his surgery. I have been working hard to try and find a way for him to be on Medicaid because he needs services above and beyond what the typical health insurance plan will cover. For example, respite hours. This is where we hire and train a person to work and care for our children (Tray and Nettie qualify because they are on Medicaid due to being adopted and disabled) and then the cost is reimbursed to us. However, Joshua is the only one that didn't qualify because of his medicaid status that he wouldn't be allowed to be here when the respite worker came (it is ONLY for the "approved" kids). Now, that makes NO sense to me at all, since he is the one that needs the MOST supervision!! He would also be able to get an "assitive technology" evaluation. Nettie is going to get one and Joshua needs one as well. This is an evaluation that will assess their learning needs, learning disabilities, as well as their learning Abilities and then identify areas that technology can help them overcome any obstacles they may have. Both Nettie and Joshua have a hard time with writing. It is the bane of Joshua's existence if you ask him. LOL So we have been reducing the amount of written work he has to do. However, that will only last for so long as the demands for work increases each school year. So we need to find a way for both kids to say what they need to say and have it done on paper without stressing them with the laborious task of writing it by hand. With Medicaid this eval is covered as well as many of the recommendations that come from the eval. He will also have access to hearing equipment he can't get now, because it isn't considered "medical", like a vibrating alarm clock, stobe-effect smoke alarms, etc. The vibrating alarm clock alone is over $50!! Now that isn't bad, if I didn't just have to pay $300 for hearing aid repairs, $100 for a second set of earmolds (for his fm system in the school) and $50 for the programming of his digital hearing aids. Oh by the way, he chose blue and red earmolds this time around, very bright!! So you see, it isn't that I DON'T want to pay, I am. It is just that he should qualify on the basis of his disabilities. But they keep telling me that his IQ isn't low enough. He definately has a TBI (traumatic brain injury) but was fortunate enough to come out of it with his IQ still intact, so they won't qualify him. They completly disregarded his seizure disorder, his hearing impairment, his chronic health needs, his obsessive compulsive disorder, his behavior challenges and his severe sensory dysfunction, not to mention the learning disablities that are now becoming more and more apparent.
AHHHHH, anyways, I am preaching to the choir here aren't I. LOL.
Nettie is doing great in school!! She is going to start some new adoption support groups next week. She is going to go to a group specifically for kids that are transracially adopted (brown kids with peach parents, like us) and one for teens that are adopted. They will last for about 6 weeks each and I think that she will really enjoy mixing with other kids that have so much in common with her. When Tray is old enough, I will make sure he is active in such groups as well.
Tray is doing well in school for the most part. He actually spent time in the principal's office yesterday because he pushed a student out of a chair and then hit the teacher who was reprimanding him. We are trying to find out if it is just the way that Trayvon is processing his enviroment (not necessarily picking up on the adult cues around him) or if it is fatigue that is generating the behavior melt downs, of if he just needs some "teaching" of correct social interactions. I think it is all of the above. On days that he has a hard time in school he will always come home and take a 2-3 hour nap. But he needs a GREAT deal of verbal reminders on how to "be nice" to his sister and brother. He doesn't see their body language or hear their words to help him determine a proper course of action. I know it will come with time, I just hope the school will have the patience for him! LOL
I heard good news regarding Marriela today!!!! They are waiting on a contracting agency in Mass. to work with our agency. Once that has been done, our agency just has to forward an updated copy of our homestudy to the Mass. contracting agency. They will review it and then send it to the local DSS where they will call us and to come and get her!! All in all it looks like it should be less than 8 weeks. I know I was hoping that she would be here before Halloween, but she will definately be here before THANKSGIVING!!! YEAHHHHHHHH!!
I went out and bougt a new pillow and baby record book to start for her. LOL
Well, that is it for now!
Taking the kids to Six Flags at Darien Lake for the Fright Fest weekend. We're only going on Saturday and spending the night at the hotel and coming home, but it should be a great time and will get us in the mood for Trick or Treating!
Take Care and God Bless,
Renee
Monday, September 29, 2003 2:13 PM CDT
Hi everyone,
All continues to move along well here. Joshua is doing great since surgery. We go back on Friday for the lab results. I am nervous and anxious at the same time. I look at him and at times, almost hope the results are no good, so he can get the IVIG. Then I look at him and think, YEAH! No more port, no more IVIG, no more doctors because he has a nice and healthy immune system. But then he will be committed to a life of fatigue since we won't have any more idea why he is tired all the time. It will be something he just has to live with. So again, we are left waiting for blood tests to guide our actions. We will also know if he needs the growth hormone and the monthly injection to stop puberty. So alot is riding on Friday's appointment.
Nettie is doing GREAT in school!!! So few people know Annette from when she was a very small, sick child. Nettie has been in Hospice 3 times, she has had pneumonia more than 22 times, missed 97 days of school her kindergarten year and when she was there, she was getting 3 IV antibiotics around the clock (she has always had a one-to-one nurse). She spent more time in the hospital than out from 3 years old to 7 years old. She has had 7 central lines and one port-a-cath in her lifetime. She has had 14 surgeries, and more than 10 PICU admissions due to septic shock. We were told she would never walk, yet if we didn't operate on her legs and feet as soon as possible, she would die from lung failure because she was always lying down or crunched up, making it virtually impossible to erradicate her pneumonias. Yet here she is today, sitting in ALL 6th grade classes, walking with her walker to many of her classes, passing ALL of her subjects and STILL learning more and more each day. Yesterday she said she wanted to go to college. COLLEGE!! Can you believe that! I wanted to cry (but she would have been very upset that she made me sad). It is still hard knowing that there will definately be limitations for her. I have faced reality. But her limitations are less and less with each passing year. I do dread the day she turns 16 and will want to drive. Driving is NOT in her future, but she doesn't know this yet. Graduating with her current "friends" will not be possible, she will have to stay back at least one more year of school. Again, she doesn't know this. For these heartaches, I feel very sad for her. Yet she has sooo much more going for her now than ever before!! We are so proud of her it hurts sometimes.
Tray continues to do well, though he is fighting a bad cold at this time. I have been keeping a close eye on his lungs to be sure they stay nice and clear. So far his new medications are doing the job and for that I am very pleased. He is doing better in kindergarten now. I think he just needed a transition time. I will be having a meetign with his teachers soon, to see just how much more he needs to catch up with his peers. I saw him playing on the floor in his classroom today and it was soooo nice to see him having a great time in school and being such a social child. He has so much going on in his little body, that it is amazing that he has made as many strides as he has!! He is continuing to make many great strides!!
We heard that the contract between the two adoption agencies has almost been completed. From there some minor paper work is needed and then it has to pass through a couple of different agencies that oversee intrastate adoptions. I am so frustrated that it isn't even funny!!! This has to be equivilent to labor pains! LOL :-P
Take Care and God Bless,
Renee
Friday, September 26, 2003 3:27 PM CDT
Hi everyone,
It's been an interesting few days. :-) I am writing from University Hospital where Joshua was admitted yesterday unexpectedly. With that said however, we are waiting to get discharged as we speak.
Yesterday we headed back to clinic to try for another blood draw via his port. Some of you may remember that 2 weeks ago it was an absolutely nightmare trying to get it to work and we decided it wasn't worth the agony of trying anymore that day. So yesterday was the day of our return. Well, the dang port didn't work again, but this time each time they flushed it, it HURT him. So the nurses decided he needed to go to interverntional radiology to have things checked out. After only one picture and only 1cc of contrast, the problem was very obvious, it was VERY BROKEN. The catheter had moved almost 6 inches up his chest away from the beginning of the port. UGHHH. So we were admitted because the other end of the catheter had migrated far down into his heart and they wanted him on strict bed rest until the port could be removed surgically. He had his surgery this morning (where they also drew all those blessed labs we have been trying to get for 2 weeks!). It was very uneventful and he is doing well. We are just waiting for surgery to come up and discharge him home.
Now we will wait and see what the labs show us to decide if he needs the IVIG again and if he needs to come back in and get a new port.
Nettie and Tray are both doin well.
Take Care and God Bless,
Renee
Sunday, September 21, 2003 6:31 PM CDT
**** September 22, 2003
Mini (but not really so mini) UPDATE***
Today was one for the books, really. At 8:40 am we were off to our first appointment, skull x-rays for Joshua (needed them for his 4:00 appt with the neurosurgeon), finished at 10:00 took him back to school, picked up Nettie BACK to the hospital for a wheelchair review (I have not liked the way she looks in this chair or how her back always hurts in it), finish at 12:10, got her a peice of pizza for lunch and back to school, picked up Tray and down to the eye glass store (he sat on his glasses and flattened them completely), finished at 2:10, stopped by Dunkin Donuts for 100 munchkins, swing by the Family Dollar for 3 boxes of Capri Suns, swing by the house for the "goodie" bags and BACK to the school for Joshua's classroom party, finish at 3:30, BACK to the hospital for his neurosurgery appointment, done at 5:10, go home, wait here for Peter to get home so I can take Tray BACK to the eye glasses store to pick up his new glasses (old ones were TOO flattened to repair). THEN I"M DONE FOR THE NIGHT!!!! LOL Oh yeah, somewhere in there I finshed my newsletter for work and dropped that by the duplicating office as well.
NOW, for the results of all of these appointments (told you, this wasn't mini): Joshua's skull has healed completely, BUT he has to much free fluid in his brain to play contact sports. He is at an extremely high risk of strokes due to clots with any head contusion (yes, I would really like him to wear a helmet, but the doc just stared at me like I had a third eye with that comment, go figure). So he can not play football like daddy, he was ok with that info for now, I am sure it will be an issue in the future. Nettie's chair was fixed in several different ways (I made them do it my way and though they fought me like crazy at first, they really liked what she looked like in it after they saw, again, go figure). Next year, just before middle school, we will probably begin the process of ordering her a power chair to make her more independent in life and school. I already stated that Tray had to get all new glasses (went with bronze this time). He also saw the cardiologist on Friday. His bloodwork was all just fine, and he was NOT dehydrated like we hypothisized. So we changed diuretics and he has had a very nice response. He diuresed (or peed) very well for the last 3 nights and days after each dose of the med. He is now on 20mg of Lasix BID and 25mg of Hydrodiuril BID as well as aldactone at 12.5mg BID (all are diuretics). It is supposed at this point that he has a lot of fluid build up around his intestines thus the reasons for the vomitting, since the change in diuretics, he hasn't vomitted but once. This is good.
Well, that is all for now.
Ok, mini update has just come to an end. :-)
Oh, it is so very hard to believe that 8 years ago my son was born. Nettie had been in the hospital all summer for complications from a systemic infection and I spent all summer with her (7, 8 and 9 months of my pregnancy) sleeping on the tiny pull-out beds in the hospital room. I was HUGE and had to frequently buzz the nurses to come and help me out of that dang bed so I could go to the bathroom or eat. LOL On several occasions, I had some premature contractions and the nurses would insist that I go up to Labor and Delivery to be checked out. They were wonderful. On September 21st 1995 at 7:30 am, I woke up, took a shower in the "parent shower" and kissed my baby good-bye (Nettie was sound asleep still). Peter and I took the elevator upstairs 2 floors and prepared for my scheduled c-section. Joshua was born at 10:09 am, weighing in at 9lb 2oz and 21.5in long. He was a full 2 weeks early and in a full breech position. We already knew before his delivery that he had hydronephrosis (extra fluid in a kidney). Within hours after his birth, the doctor was telling me (while I'm doped to the hilt on morphine) that his hydronephrosis was severe and he would be followed closely by the urologist after discharge. At only 3 months old he developed a blocked ureter and had to have surgery ASAP to re-implant the ureter onto his bladder. I honestly did not know or think that this was a very big surgery. After the operation the surgeon told us "Now we just have to wait for him to heal in the next 7 - 10 days and then we can go home!" 7 - 10 DAYs!!! I had NO idea how I was going to come up with coverage to care for Nettie while I was in the hospital for 7 - 10 days. But God cared for us the whole way and Annette stayed remarkably healthy during that entire time (she was admitted just 2 days after his discharge to the PICU for like the 3rd time). I thought that was the worst he was going to throw at us, how little did I know. . . He celebrated his 3rd birthday in the hospital during his stem cell transplant. From that point on, every birthday has more meaning, more signifigance and more awe than the last. He is growing up, something few ever thought he would do. Thank you God, thank you.
Looking back now, it is so hard to recall all that Joshua has been through. Kidney surgery, ferocious unreleting ear infections, brain tumor, seizures, hearing loss, missing part of his brain (making impulse control very difficult sometimes), immune problems for years, monthly infusions and still has a port-a-cath. He is truly an amazing child and though he could challange even the most seasoned parents, he is one of the sweetest, kindest, hardest working kids you will ever meet. He LOVES everyone and giving hugs and kisses is still one of his favorite gifts. He still has a wonderful neiveity to him that other children his age are beginning to lose. He believes in Santa as much as he believes his father was once one of the "world's stongest men" (long, but very funny story Peter told Joshua eons ago, that has sort of perpetuated itself).
Joshua you are loved beyond words and may God continue to shine upon you and bring all of your dreams to reality.
Hugs and Kisses,
Mommy and Daddy
Thursday, September 18, 2003 7:19 PM CDT
Hi everyone,
Ho hum, ho hum, things just keep amovin' here in Curkendall land. ;-)
We were at clinic all day today while Annette recieved her IVIG infusion. It was highly uneventful, which is good. She has grown a full inch since last visit (though I seriously question their method of obtaining her height each month) and came in at 4'9" (she is now just on the cusp of no longer qualifing for the "Little People of America" Club, and yes, this is a real organization for females 4'9" or less and males 5'3" or less)!! However, her weight increased as well, by 5.2lbs in one month!!! I have no idea what we're going to do with her weight gain. It can't continue at this pace. I am now waiting to here from another doctor in the NYC area that specializes in metabolic disorders. I am soooooo hoping someone has at least a SUGGESTION on how to help her.
Joshua did NOT go back to the lab for his bloodwork and port access. More than a week later it is still completely black (like black and blue, but only black) around the entire port site. The edges of the bruise are starting to turn brown so I know it is improving, but we are going to wait until next Thursday to try again. He took a 3 hour nap today.
Tray is going in for stat bloodwork to determine if he is losing protein, has low albumin or if his potassium is to low. Any one of those reasons could explain his current trend of fluid retention, vomitting and fatigue. It is entirely possible that when he had that run with the virus that caused the high fever for over 7 days straight, he became dehydrated and his body is still trying to compensate for that. If that is the case then he may just need some IV fluids to correct the imbalance that has resulted and then he should need no further intervention. If none of these labs looks off, then we will go back to the 40mg of lasix three times a day instead of two like he is now(that is a huge dose, even for most adults!) and see if that controls the symptoms once again. No one can seem to explain why he is so "unstable" from a cardiac stand point. Most kids I know, or whose parents I communicate with via list-servs, with kids with heart conditions just like Tray's, rarely EVER have problems like these. They see the cardiologist every 6 months or yearly for their echo and ekg and they're off. Most are only taking one or two meds, Tray is taking 9 and has only had to go up in dosages as oppose to down like we thought. I don't know.
In Marriela news we heard that the paperwork is making it through the beauracratic machine slowly and we are hoping that she will be here before Halloween. She better be! I already bought her a costume! LOL
Also in the news here, we have 2 new (older) cars!!!! We have a "new" 1995 Chevy 3/4 ton hi-top, conversion van, mood lights, bed and tv/vcr included! I LOVE it, though I do have to admit it is huge!!! It only had 58,000 miles on it which was WAY less then almost all of the used 2000 - 2002's we were looking at. So it was a great deal and exactly what we needed for our very active lifestyle. Peter also bought his father's 1992 Cadillac DeVille. It is a beautiful car with power everything, 6 cd player, leather interiors, etc, etc. So we are traveling in style once again. Sigghhhh. I am now known locally as a serial car killer. I even think there is a reward out for me at this time. :-)
Take Care and God Bless,
Renee
Friday, September 12, 2003 2:04 PM CDT
*****ADDED NEW PICTURES******
Mini update: 9/13/03
Tray has us worried again. The last few days he has been sleeping A LOT more and had begun the cycle of fluid retention in his face and vomitting. I was more worried today because he took a 4 hour nap yesterday (when he woke up he was VERY puffy) and then slept for another 9 hours last night. Today he actually "asked" to take a nap today!! He slept for about 1 1/2 hours and vomitted up all of his dinner again tonight. I don't know if school is just to much for him at this time. We'll see I guess.
Hi everyone,
Ohhhh, was yesterday a long day for Joshua and I. :*( What was suppose to be a simple blood draw to determine his current immune status as well as his growth and testosterone levels, turned into an all day affair with many tears and screams of pain. We arrived at clinic at 9:15 am, signed in and waited for the nurse to call us. Joshua was weighed (gained another 4 lbs and 2cm). Then we go back to have his port accessed to draw oodles and oodles of blood for all of these tests. Now a brief history here regarding port accesses. He has done GREAT with every one except the first. But he had always used EMLA (a numbing cream) prior to the access. 2 weeks ago when he had to have a port flush, he declined the EMLA because it makes a mess when it leaks out of the tape (that goes over the cream to keep it on the spot that needs to be numbed) and anyone who knows Joshua, knows he can NOT tolerate anything that makes him feel wet. So he tried something different. It is a numbing spray that "freezes" the skin where the procedure will take place. It went like a charm...
So, back to yesterday. We used the spray BUT for some reason Joshua was screaming in agony everytime she moved the needle or his port. It also failed to have any blood return. So she had to remove it. By now he is beside himself with pain and distress he jumps off the table and refuses to return. We gave him a break and several other nurses come in to help get him back on the table. He was SOOOOO upset, but this time the port was accessed wonderfully and he didn't even know when the needle went in. However, despite the re-accessing, it still would not work. So we had to order something called TPA (a clot buster) and inject it into the port and tubing to see if it would break up any clots that may be blocking the blood flow. Nothing, nothing, nothing. While trying desperately to get some sort of blood return, the nurse pulled the needle back slightly to see if it would work better. NO, it stopped working all together!! So off to another room where we had to remove the second needle and access him again because now he has no heprin in his line (if you don't line the port and tubing with heprin, then the blood will clot and you definately will not be able to save the port). Again, several people assisted and this time again, it was extremely painful for him and he really did try to stay still, but everytime they touched his chest he cried out in pain. By now I am crying and burying my head in his shoulder while I hold his arms above his head so he doesn't rip out the third needle until the heprin gets in. It was an awful experience.
Then the doctor comes in and says that we need to consider taking it out. Thankfully, Joshua's oncologist was in the room with us and said that it was probably a positional thing and that if we come back next week it will most likely work like a charm. Apparently, over time the tubing running from the port under his right collar bone and down the left side of his chest into the heart, can shift with a lot of activity and if you just let the child go and let them play normal, etc. the tubing will "readjust" itself and work again. So he more or less told the doctor to step aside and let those who work with these apparatuses make the calls on when and where we have it removed instead of someone who rarely orders or even sees patients that have them. In addition, if he were to have it removed, it would only be after the test results come in to see if he needs the IVIG again, because if he does, then he will need a new port. It would just go in at the same time as the old one is removed if that were the case.
Sooooooo, we go back next Wednesday and try all over again.
On a better note, we found Tray's glasses and we are in the process of buying a new van right now, as I type this!!! We will have it parked in our driveway TONIGHT!!!! LOL I'm giddy with excitment!!! The kids are going to love it. It is a chevy conversion hi-top van with tv, cd player, captians chairs and the back bench seat even folds out to a queen bed!! To Cool! It's a 1995 but only has 60,000 mi on it and it has a complete towing package for when we get Nettie's motor scooter and need the external lift anchored to the back! :-)
Well, that's it for now.
Take Care and God Bless.
Renee
Tuesday, September 9, 2003 8:29 AM CDT
Hi everyone!
Well, school has started and life has begun to slow down. Yes, in our house, life gets slower when school is in session instead of the other way around! LOL Nettie is doing well thus far. She seems to be enjoying the idea of 6th grade and is going to spend almost ALL of her time in the regular classes vs. being pulled out for special instruction. I have mixed feelings on this, but have decided to "give it a try". I have very high expectations for my children, yet seem to underestimate their abilities regularly! On the other hand, the teachers have lower expectations, but and overestimate their abilities, so somewhere we need to find the happy medium.
Joshua really likes his 3rd grade teacher, Ms. Middleton. Oh crap, just remembered, he doesn't have his hearing aids at school, need to bring them. . . note to self. He came home last night and excitedly sat down and did half of his homework and did the other half independently this morning. He actually did GREAT work, instead of just rushing though it like he usually does.
Tray is doing very good as well. He likes his kindergarten teacher, Mrs. Alles. She is a very kind soul and has a gentle touch but a firm hand at the same time. Tray will do well with her. Peter and I have talked and decided that we want to hold Trayvon back in kindergarten. He is the youngest in the classroom and the furthest behind academically. Even if he catches up to his peers (which is highly unlikely in just one year), he will still be the youngest. I think an extra year in kindergarten will be much better, self-esteem wise than waiting until 3rd grade when he has made soild relationships. I wish I had held Nettie back in kindergarten rather than having to wait until her fifth grade year (she was held back in second grade as well).
Health wise, all are doing well. Nettie and Joshua had dentist appointments yesterday. Both got good marks, but need to brush their back teeth harder and longer. Joshua goes back in 6 weeks and Nettie in 6 months. Joshua has his lab work done on Thursday to recheck his immune status, his testosterone, and growth hormone levels. If any or all (as I suspect) are abnormal, we will start treatment in October. Tray visited the eye doctor and did very well. His left eye is still quite a bit weaker than his right eye, so now we have to start patching it. He will wear the patch at school for 2 one hour periods while doing fine motor or academic activities. That was until he lost his glasses AGAIN! So now I have to reorder him a new pair of glasses. I wish they had glue on lenses so they couldn't fall off! LOL
We hopefully will have a new van by the end of the week as well as a new (old) Cadillac for Peter. He just has a hard time getting comfortable in regular cars because of his height and size so we are buying his father's 1992 Cadillac Seville at the same time we buy the van. Then we will have 3 cars!!! (the third being the winter rat we bought to just cruise through the snow it).
No new news on Marriela.
Take Care and God Bless,
Renee
Monday, September 1, 2003 9:36 AM CDT
Well, hello everyone!!
Oh my oh my. I am sooo tired. Peter's sister got married this weekend (well, actually, they got married last year in a very simple ceremony but she was pregnant and really wanted the "big wedding" as well). We have had people here for the past 4 days (as many as 30 at any given time) and I am sooo tired from being "hostess". I have however, truly enjoyed my time and LOVE having people over, just tired.
Joshua was the ring bearer for the wedding and he looked so GOOD in a tuxedo. He was a proud peacock walking down that aisle.
He has lab work done next week to check his immune system. He is very fatigued all the time. It is so sad to say that I almost hope the tests come back bad so he can get his IVIG again, he was soooo much better on it. He will also be having lab work to determine the true extent of his growth hormone deficiency and wether or not he has started puberty. If the two latter ones are still abnormal then he will start next month on a nightly growth hormone shot and a once a month shot to stop puberty from occuring. He will take both of these shots for the next 9 years. OMG, I had never thought of it in that light. Nine years, that's a long time. But it will be best for him. He will grow to his "God given" height and he will be "physically" the same as his peers instead of him having to worry about sexual maturity years ahead of his friends. These issues exsist because of the radiation he received to his brain for his tumor. The radiation damaged his pituitary gland which regulates most of your hormones (especially the ones responsible for growth and puberty).
All 3 kids start school on Thursday. Nettie thinks the word school should rank up there with some of the other 4 and 5 letter words people shouldn't say. LOL But Joshua and Trayvon are thrilled to go back to school. Tray is all ready for kindergarten. We got a lot of school shopping done and just have to get a few more specific school supplies.
I think I have found an endocrinologist for Nettie to see for her lipodystrophy. They are about an hour away, but I think the wait time for an appointment is worth the drive. Here in Syracuse the wait is over 6 months, but this doctor, after reviewing the charts, sees the kids in less than 2 weeks. See, that is much better. :-) Here's hoping that he will work with me to try and address her problems.
Trayvon sees the eye doctor tommorrow to follow his progress and be sure he doesn't need the prism lenses. He is learning numbers and letters now with no extra help from mama so I think he is seeing just fine now.
Nettie's nurse of 7 years had her last day here on Friday. Tomorrow we start with a new nurse. I am more nervous than Nettie I think! Joanne was a God Send to us and it is soooooo hard to know she isn't going to be here anymore. The kids have grown up with her!
Nettie goes to see the orthopedic surgeon on Wednesday to be sure her hips are still ok. Hopefully she will not need the surgery on her other hip and her scoliosis has gotten better!
Joshua and Nettie go to the dentist next Monday. Joshua is still being followed very closely for his abcess and Nettie has a cleaning.
Nooowwwww, as for Marriela. We still don't know when. But we do know it is a sure thing! I am guesstimating about another 4 - 6 weeks. She is doing great, her health is wonderful (though the real hard time for her will be winter) and she is making developmental gains weekly. Now that the wedding is over, I will be taking the king bed out of her room (which has been used up until now, as a spare bedroom) and finishing up the details for her arrival. I hope before October.
Well that is it for now!
I will be trying to get a picture of our newest arrival on today sometime. :-)
Take Care and God Bless,
Renee
Monday, August 18, 2003 10:54 AM CDT
Hi everyone!!!
Oh my has it been a long time since my last update!! The verdict is in for the poor van. . . I killed another engine. I am really starting to form an inferiority complex when it comes to cars. If you go back and read the archives you will see that we have a long history of going through cars. We are going to have them put in another engine for $1400 and then go for a new van in a few months. I dread the idea of having a car payment!
My sister came in from Minn. last week and stayed a few days with us. It was so nice to see her and my neice and nephew again! We went out this past weekend and spent the day with my family at the Great Escape fun park in Lake George, NY. It was great time for all. She will be swinging through on Wednesday for the night before she gets on the road for home Thursday.
Nettie and Joshua had a GREAT time at Camp Hole in the Woods!!! Joshua did however, sleep alot. I have asked for his immune studies to be rerun to see how he is doing without the IVIG. Nettie had a fantastic time AND she did the talent show!!! She has been suffering from a bad case of stage fright for the last few years. This year she got up there and danced with several of her camp "sisters"! Joshua told a couple of jokes (which were absolutely awful and I will pay someone to provide better comedic material next year LOLOLOL!!).
I met with a doctor on the infectious disease team that follows Annette adn Joshua for their infection and immunology issues. I have been really pushing to start some sort of treatment for Nettie to address her body shape and lack of height. I really want to start her on growth hormones but the team have repeatedly stated that they feel the benefits do not outweigh the risks for the HIV population. However, if a study does become available for kids with lipodystrophy, they will be more than happy to enroll our site in the study and let her get the drugs here at home. Unfortunately there are no studies happening right now, but I will be looking and calling he manufacturer of the hormones to see if any studies are in the works.
I also spoke to him about Joshua. I am concerned about his level of activity and he fatigue. I would really like him to go back on the IVIG but unless he has to many infections or his labs look bad, they won't. So we are rerunning the labs in September to see if he has had any response to the vaccines he recieved on the IVIG. I will also be making another appointment with the allergist to see if there is any chance that he could be allergic to more things now that he is older.
Tray is doing great! He is still on the high doses of lasix and other meds, but he is going back in October and hopefully we will be changing those meds then. He and Joshua have hearing tests on Friday.
We are still anxiously awaiting Marriella's arrival! It looks like it might up to 2 months before she gets to join us, but what's two months in the scheme of the rest of her life! LOL
Kama, Nettie's service dog, has had his own allergy problems and we had an emergency trip to the vet. He developed some seriously infected "hot spots" overnight and needed a shot of prednisone and came home on a heavy duty antibiotic adn oral steriods. He is doing much, much better.
Well, that's it for now! Take Care and God Bless,
Renee
Thursday, August 7, 2003 10:48 AM CDT
Hello everyone!!
Oh my what a busy week this has been! I went to VA to my conference and LOVED it, but unfortunately was only able to stay the one day before having to come home. (I knew that was going to be the case, because the kids needed to be taken to the bus for camp the second day of the conference). But I still learned a lot and came home ready to work hard for Pediatric AIDS and the kids. LOL
I came home on Monday and finished packing Nettie and Joshua up for camp for the next day. Peter and I dropped them off at their bus at 8:30. Both kids were SOOOO excited to be going. I have called a couple of times and all seems to be going very well so far with both of them. I hope to go out on Friday to be closer to them if Joshua starts to have issues with homesickness later in the week.
After we dropped the kids off Peter, Tray and I headed off to Boston to meet our new daughter, Marriela!!! First we met the social worker and had the opportunity to read ALL of her medical files. However, since she is a year old today and most of the files are from her birth, they are of no use to us now. We decided to wait until we met her to decide if she was the right one for our family. I was THRILLED to see a happy, chunky little baby - with absolutely NO teeth at all - hanging out in her walker. She readily came to both Peter and I and loved trying to grab Peter's hair (for those of you that know Peter, he has no hair on the top of his head, so she was fighting a losing battle there!LOL). I noted a couple of things, but felt confident that she will be a great addition to our family. The things I noted were her increased tone. That means, that her muscles "over-respond" to external stimuli. It was especially notable in her feet, so when she stands she is way up on her tippy toes. It was also noticable in her arms and back, as she preferred to hold her arms behind her rather than in front of her. But she was easily able to move her legs and arms so she can control the tone and just needs intensive intervention to prevent any additional tone from developing as well as reducing what is already present. She loved clapping her hands, grabbing Peters nose, "hair" and shaking her toys. She smiled at everyone and was very socially appropriate. Her lungs will be her weak spot and we will need to be very diligent about keeping her strong and healthy so her lungs can heal from all of the damage done in the NICU.
I can't wait until she comes here!!!!
Tray had a great time (I think. . . he never actually stated that per say). However, he started asking lots of questions about his "brown" mom and so I think we are going to be addressing some of the initial "adoption" questions very soon. I have given him a picture of his birth mom and he calls her his brown mom and me his peach mom. He asked for both and you can see the confusion and even some pain when he talks about where can he find his brown mom. I hope we can help him work through this. He's such a little fighter and I love him immensly. It hurts to see him struggle with such big concepts at such a young age. When Nettie gets home, I'll have her help me also. LOL
Well, that is it. Oh Yeah, one more thing, I killed another car. The Windstar ran great the whole trip until I drove it. We are going to have it towed back to Elmira to see if it is the oil pump, or if it is something in the engine. If it's the engine, then we are dumping it and goiing for a new one. How, I do not know, but we have too.
Well, that is it.
Take Care and God Bless,
Renee
Tuesday, July 29, 2003 9:26 AM CDT
Hi everyone!!!
It is soooo hard to believe that when I started this web site, we were just finishing Joshua's treatment and only had 2 children. Then we added Trayvon, and boy what a trip he has been! LOL He has kept us on our toes since his arrival Memorial Day weekend two years ago! And now. . . our fourth will be joining us in just a few short weeks. We were approved as the family for little Marriela in Massachusettes and now we are just trying to figure out the best time to have the paper signing, meeting of Marriela and her trip home to our house. I am scurrying around now like a mad woman to try and scrape together at least the bare minimum a baby would need. She is a tiny little thing and will definately need "baby" stuff. Her first birthday is August 7th but she was born 3 months early so she is actually just 9 months old (developmentally as well). She only weighs 13 lbs!! I have a stroller from a good friend, we are converting an old table into a changing table (one of my loves is refinishing furniture), a dresser, a swing and a car seat. But I don't have a crib yet. My sister-in-law has a bassinet that may work as a temporary bed, but I don't know if Marriela is going to go for that, she's been in a crib her whole life, a bassinet is VERY different.
But I guess we'll just have to keep our eyes and ears open for any cribs wandering around out there with no babies in them! LOL
As for our weekend and Tray, both were wonderful! Tray never ran another fever after his appointment with the doctor on Friday. We decided to go ahead with our weekend and are thrilled we did. He was fine, as were the other two and we had a WONDERFUL time!! The food, company and surroundings were great. I already can't wait until next year, but now we will have to find a babysitter for 4 kids instead of 3!
Nettie and Joshua are both doing great and leave for camp next week. Both are very excited about camp this year. I am still waiting to hear from Nettie's doctors as to whether or not they think they can address her growth, weight and insulin issues.
I leave this weekend for a conference in Virgina. It is the PACTG (pediatric AIDS clinical trial group) and I am a parent consituency and will be addressing the medical community on what I feel the needs are that are currently going under noticed or un-noticed. For me, the issue I wish to address is "Lipodystrophy in children". I am hoping that by meeting with the very people responsible for creating, maintaining and providing the clinic trials that our children are enrolled in, I will be able to bring more focused attention to Annette's needs (in turn bringing attention to children across our country faced with this awful side effect from either the virus or the meds to treat the virus). It is hard leaving so many times in a row, but it is important and I never feel that I do enough to address Nettie's needs so this is definately something that I want to carry through with.
Peter and I are so very excited about our new arrival, but also overwhelmed with the rapidity of it all and the need for so much in such a short time. We will get through it though, like we always do, together.
Take Care and God Bless,
Renee
Friday, July 25, 2003 7:25 AM CDT
Hi everyone!
*** UPDATE****
See below for events leading to today:
We saw the cardiologist and though he "can't see any infection per say" he felt that if the fevers continue through the weekend, then he needed to be treated empirically with 6 weeks of IV antibiotics. The normal course for a virus is 7-10 days, Monday will be day 9. If it is still there Monday, we have to assume he has an infection somewhere, though his cbc done at the ER last night was completely normal. Soooo, Peter and I are going to go on our trip. The doctor's assured me that if he has endocarditis, it is "sub-acute" and he isn't going to change his course. And if it is a virus, it should be gone over the weekend, so we would stay home for nothing anyways. So we decided to chance the one night "out of town" and tonight we will stay close to home, but still go out and stay at a hotel. That's it for now.
Take Care and God Bless,
Renee
The elusive fevers continue for Tray-Tray. He and I spent 3 hours in the ER last night waiting on another round of blood work and blood cultures. Today I am taking him into cardiology as per the on-call cardiologist's request, to have and echocardiogram of his heart. There is a possibility (though smaller if his cultures remain negative) that he has an infection in his heart. His fever may be the result of bacteria "showering" into his blood stream after vigorous excercise or activity. Yesterday's fever was one of his highest and it was after he did his martial arts class. When he is afrebrile he feels just fine! He is playing right now and wants to know why he can't go to school. But when he starts to get sick, he LOOKS and FEELS terrible. The ER attending did tell me that he has seen many children the past 2 weeks with nothing but fever (sometimes very high) with no other symptoms. It is some unusual virus that is making its rounds and should depart the area soon. However, since Trayvon has several underlying issues that make it very difficult for him to fight off infections, you have to take the fever a bit more serious.
Peter and I are still hopeful, that if today's echo is negative, we will still be able to go on our weekend excursion. We did change our plans to spend tonight more locally before driving all the way up to Blue Mt. Lake. That way if there is an issue, we are closer before making the trip up, but still get to enjoy our WHOLE 2 DAYS away! LOL Because if the echo is negative, and his blood work is not impressive, then we have to assume it is the viral infection and he will clear it on his own. My sister can give Motrin as well as I can! :-) But if the echo or blood work show something, it won't matter because we'll be off to the hospital. Yep, need those prayers there!
Nettie had her IVIG yesterday and did great. I spoke to her nurse practioner about my concerns and the need to investigate possible treatment options for her weight gain and redistribution. In addition, she has now developed insulin resistance (mild at this time) which is all part of the pattern for Lipodystrophy. There was a study that showed Growth Hormone significantly improved the body shapes and insulin resistance in adolescents with the same problems as Nettie. I think I made some impact, because she was much more interested in what I had to say once I handed her a copy of the study! LOL Here's hoping that we can help Annette.
Joshua is doing well. He saw the dentist yesterday and all still looks well for his mouth. She can see where the infection started and that he may be at risk for multiple issues on both sides of his mouth due to the way the roots of two of his upper molars developed. The roots are spongy and not well formed, allowing food and saliva to pocket there. She'll keep a close eye on him for the next 6 months with visits scheduled every 6 weeks at this point.
Now, on to the BIG NEWS!!! We think we have a new baby daughter!!!! I have been in contact with an adoption worker in Massachusettes who has chosen us as the family for 11 month old Mariella. She actually turns 1 year old next week (August 7th) but she was born 3 months early so her gestational age is actually only 9 months. And that is about where she is developmentally. She has chronic lung disease, but she is no longer O2 dependent and she has made tremendous progress developmentally and medically in the past 3 months! She is tiny, only 13 lbs at 1 year old. I think Joshua weighed that much at the end of his first week! LOL Seriously though, I think he did, he was 9'2" when he was born and stayed in the hospital for 5 days (where he gained, not lost like most babies, a pound), after he came home, he gained almost 2 lbs in the first week!! I will have to adjust to holding such a small thing in my arms. :-)
We will find out next week if it is the desire of the entire adoption team in MA that we are to be Mariella's family. Please pray that they say yes!!
Well, that is it for now.
Take Care and God Bless,
Renee
Tuesday, July 22, 2003 3:16 PM CDT
Well, the elusive fever returned full force for poor Tray. He woke this morning feeling a bit warm, by 11:00 he was almost 102 under his arm. I took him into the doctors and they ran a cbc, blood culture and a urinanlysis. Because he has no spleen he was also given a dose of Rocephin to cover him for any bacteria that may be lurking in his body waiting to overrun his blood stream. Now, for those of you out there who have never experience a shot of Rocephin, you will NEVER FORGET it. . .NEVER!! It is a very, very thick medication and has to be broken up into two seperate injections. Due to it's thickness it took almost 30 seconds to complete the injection (which 2 nurses did at the same time in each leg - to hurry and get it over with). I was PRAYING the blood work would come back and show that he did not need anymore of this awful drug. Actually, it is a really good drug, it lasts for a whole 24 hours and you can give it right in a doctor's office so no IV is needed. However, it is soooooo very painful to recieve.
To complicate matters, Tray was reported to be allergic to the drug Ceftin by his foster mother prior to being adopted by us. Since Rocephin and Ceftin are in the same class of drugs, we had to stay at the doctors in the "treatment" room for 2 hours to monitor him for any adverse reactions he may have. Luckily, he had none. Though he may have broken out in hives after using Ceftin, it is thought that since he has taken daily amoxicillin (many people allergic to penicillins are also allergic to cephlasporines - the class of antibiotics Ceftin and Rocephin are in) he has de-sensitized himself to this other class of antibiotics. Either way, it was good to know if this is one he can have in case of a situation like we have now (fever with no identified source of infection) or he can't have it and we need to find something else to cover him.
Anyways, it was a very long and painful day for my baby and I almost lost it myself when he was screaming and wailing after the injections. He is upstairs sleeping right now (been sleeping all day).
Nettie's lab work is so far all in the normal range (though I am beginning to wonder if we ran the right "growth hormone" labs). We are still waiting on some others.
I have to take Tray back tomorrow for a follow-up appointment to check him out and if he is still running a fever (with no obvious source of infection) they will give another dose of Rocephin (UGHHHHH!!!!!!). Please pray that the cause of his fever reveals itself soon!
Joshua continues to sneeze non-stop and suffer from sore and swollen eyes and face. We are trying combinations of over the counter allergy medications to see if we can bring him some relief since insurance won't cover the Allegra.
Peter and I hope to go away this weekend. It is our annual retreat up to Blue Mountain Lake with about 20 other couples, all with children who are medically fragile and/or multiply disabled. They pay for everything (including a free massage!) and it is wonderful company in absolutely wonderfully peaceful surroundings. We anxiously await this weekend each year. Here's praying that Tray and Joshua are well enough for us to go.
Well, that is it for now. I'll update more as the info comes in on Tray.
Take Care and God Bless,
Renee
Monday, July 21, 2003 10:53 AM CDT
Hi everyone!
I hope this finds you all well. The weekend, once again, went by in a blurr! LOL On Saturday Joshua and Nettie's summer school program was holding a carwash to raise money for the different trips they take throughout the summer. I took both of them as well as Tray and we had a very nice time helping to raise money for the class. Afterwards, Nettie and I went "garge saleing" while Tray took a nap in the carseat.
Sunday, Peter and I went to the Renaissance Festivle (about an hour away) and participated in a wedding vow renewal event. It was very sweet and well done. The "Queen" blessed us all and a Justice of the Peace presided over the ceremony. They had a wonderful meal and lots of great music. It was very authentic in the manner of which it was done in keeping with the entire "Renaissance" era (1535 is actually the year that is portrayed by the entire festivle). I will post pictures in a few days.
When we arrived back home mid afternoon, the house was silent with the exception of Uncle Larry (the babysitter) and Sammi (my neice). Tray was sleeping on the couch and it was reported that he was "falling asleep sitting up on the deck while playing". Concerned I went over to check on him and he was very warm. It was his VERY FIRST fever since joining our family almost 2 1/2 years ago!!! Normally, since he has no spleen, he has to go straight to the doctor of blood cultures, cbc and a chest x-ray. However, after I packed our stuff for the ER trip, I retook his temp (which had been 101.2 under his arm) and it had come down by itslef to 100.1. So I waited, fed him and gave him some fluids to drink. His temp was normal within 4 hours, so I made the executive decision to NOT go to the ER. Today his acting fine, eating and drinking normally and no signs of a temp. So I think he'll live through this ordeal. :-)
Joshua is still dealing with nasal congestion, but a visit to the doctor reveled nothing to significant so they are still ruling it allerigic rhinitis. I tried to fill his prescription, but the isurance will not cover Allegra any longer and Claritin and Zyrtec do nothing for him. So I do not know what to do for the poor guy.
Nettie is still dealing with her g-tube, but is otherwise doing really well. We had her bloodwork drawn and her x-ray of her hand taken (to determine her bone age) on Friday. We should have the results in by the end of this week and then we will see if a visit to the endocrinologist is in the cards.
Other than that, all is well here!
Take Care and God Bless,
Renee
Saturday, July 12, 2003 9:53 AM CDT
Hi everyone!
It's another beautiful day outside. Peter is taking the boys to a local reserve called Beaver Lake to work on some of their boyscout requirements. Right now Joshua and daddy are up getting fitted for their tuxes for Peter's sister's wedding. Joshua is the ring bearer and Peter is a grooms man. I don't know how well Joshua is going to handle the whole tux thing. He doesn't even like polo shirts because they have a collar and worse yet, they have buttons!! So the concept of seeing him in a shirt with LOTS of buttons and a tie wrapped around his neck is almost beyond fathoming.LOL Hopefully seeing Peter getting fitted for his also will make a big difference.
Nettie and I will be working on her hair (I am redoing her braids again - only I am doing VERY small braids and ALOT of them). So while the boys are partying at Beaver Lake, Nettie and I will rent a movie and braid.
Tray had his follow-up with the GI doctor and all went well. Joshua had his follow-up with the dentist and no active infection was detected. However, he complained that his teeth hurt when she tapped on them so he has to go back in 2 weeks and will have a panoramic x-ray of his entire mouth to determine if their were any other signs of infections.
Other than that all is well.
We have made a big decision for our family as well. We are looking to adopt again, and we had been identified as a family for two little boys. However, both children have special needs with the oldest one have significant developmental and medical needs. It was a very hard decision but we opted to not take them. My heart so badly wanted to take these children, but Peter, my grounding force, made many good points. We feel that the medical needs of the older child will put more strain on the other children if I had to take extended leaves to care for him in the hospital. In addition, the younger one has physical needs as well as his brother so we feared that we would have to radically change our family lifestyle (which is a very active one!!) due to so many variables in their care. So after much thought and consideration we will continue to look for a child (or children) to add to our happy family.
I do want to ask you to send prayers the way of a family who just lost one of their two boys who had a stem cell transplant for a metobolic disorder. My heart aches for this family. Thank you for your support of us and please offer some as well to this family.
http://www.caringbridge.org/co/nicollbrothers/
Take Care and God Bless,
Renee
Monday, July 7, 2003 3:46 PM CDT
Hi everyone,
I sit here listening to the wonderful sound of laughter coming from the pool right outside the window. The kids are playing Marco Polo (though Joshua initially thought it was "Marsha" Polo! LOL) and laughing at almost everything each other say. Justin my nephew is here as well and the addition of ANY playmate to the pool is just such a treat for the kids it's amazing.
All are doing well. I called today and initiated the search for a replacement nurse for Nettie. I also called to restart her adoption counseling as per her request as well as called to enroll her in a "companion" program for developmentally delayed teens. The latter program sounds wonderful and I can't wait until it starts! A local agency works with Syracuse University special education majors and pair them with teens in the area with developmental disabilities. They spend about 20 hours per semester which is about 2hours a week. Perfect for catching a movie, going to the mall or just hanging out and "chatting". I asked if we could be paired with an African American companion since Annette so badly wants to connect with someone of the same race.
Joshua has been having a difficult time with severe nasal congestion and this morning he stated his ears hurt and refused to wear his hearing aids to school. His right eye yesterday was very swollen and bright red, but that resolved during the night so I sent him to school today. He is acting fine and is out having a great time in the pool. I will wait it out a bit longer before going to see the doctor.
Tray has been doing very well. He is sooooooooo dark since being out in the sun and the pool all weekend!!
He has a follow-up with GI this Friday and ENT on Monday. I don't expect any suprises. But I always say that and then I get suprised. LOL
Peter and have been enjoying having to babysitters living next door. We have been out more in the past month than we have in 7 years!! There are 2 sisters that are very sweet and remarkably mature (17 yrs and 21 yrs) who WANT to babysit whenever we need them!! So we have been holding them to that.
Well, that is it for now.
Take Care and God Bless,
Renee
Wednesday, July 2, 2003 7:49 AM CDT
*****see new pics!*****
Hi everyone!
Well, the boys survived Camp Jr. Good Days and Special Times. The first 3 days they came home and took long naps (Joshua slept 4 1/2 hours on Monday!!). Yesterday neither one took a nap AND Joshua attended and finished his last little league game. He tried to say he was to tired and wanted to lay down and take a nap on the bench in the dug out, but I sat with him and started playing with him and he was able to go back out and finish out the game. Afterwards their coach took the team out for icecream. It was amazing how much energy he had when we were there!!! LOL
The kids are now all in summer school. I will be going in in just a few minutes to meet with the school nurse to give her the boys meds and go over Trayvon's feeding issues.
Yes, Trayvon is still having weight issues. No matter what we do, he starts off strong and finishes weak. He asks for LOTS of food, but then just can't eat it. He has also started vomitting again, so he is back on the Carafate. I was POSITIVE he had gained a pound or two when we went to the cardiologist, but no... a mere .8 kilos is all we were able to get in the 2 weeks of "good" eating! So I am really pushing the pediasure and trying the 6 small meals a day routine. He would snack all day on cheese puffs if I let him, but they have no nutritional value and are loaded with sodium! So that won't work. He is really liking carrots lately so I bought the highest fat and calorie laden blue cheese and ranch dressings I could find on the market for him to dip in. We'll see how that goes.
Joshua has finished his antibiotics and and looks good with the exception of needing extra sleep. I feel like we are just in the "wait until the next infection" mode now. I really didn't even think about him being sick since he hadn't been for so long on the IVIG and then his brief run afterwards. But now my nerves are back into the "monitor and watch him like a hawk" mode and it is exhausting.
Nettie is doing very well. We have our appointment with the pediatrician to discuss a referral to the endocrinologist and to run some basic lab work.
Peter and I will have been married 10 YEARS tommorrow!!!! Can you belive that! Well, I suppose if you have never meet us, you can, but for those who do know us. . . can you belive it has been 10 YEARS already! Actually we have been together for almost 14 years (just a little slow with the ceremony there LOL). Peter has made reservations to have us renew our vows with several other couples at the local "Renassaince Festivel" with a "Queen" (justice of the peace) followed by a special meal while watching dancing and jousting and the cutting of a large wedding cake! He is soooo cute to think of such things. I am useless when it comes to planning activities for Peter and I (I can't even think of what presents to buy for the poor man!). He always picks the best presents and plans the best things for us. THANK YOU PETER, I LOVE YOU!!!! I will post pictures of our little ceremony.
Til next time.
Take Care and God Bless,
Renee
Friday, June 27, 2003 8:25 AM CDT
***************added new pics to photo page*************
Hi everyone!
Well, several doctors later, the end of school and the start of camp, the week is off to a strong start!! Joshua had his follow-up with the pediatrician to evaluate his arm and mouth and happily, all looks fine. He had a very nice response to the antibiotics. Tray had his appointment with the dentist, eye doctor and cardiologist. The eye doctor had GREAT NEWS - his eyes have improved dramatically! No need for prisms right now. His tracking was smooth and consistent, he had no "shakiness" of the eyes when he looked up and his vision has improved to 20/20 with his glasses! That was wonderful. His dental appointment likewise was good. He has NO cavities and his teeth are in goood shape. He took the x-rays very well and it was discovered that he must have fallen on his bottom teeth when he was very little because they have no root. So they will definately be the first ones to fall out soon. LOL the dentist did also say that he will need some extensive orthodontic work (namely, palettal expansion) to try and correct his severe crossbite. If that doesn't work then braces here we come. UGHHH. Tray's visit with the cardiologist also went well. Though we still don't have a full understanding of Tray's edema, we do know that he has some mild "pulmonary hypertension". It is supposed at this point that since he has very small pulmonary arteries as well as a leaky AV valve, to much blood is backing up and his face is just very susceptible to edema. So we decreased his Lasix to 40mg twice a day and if he does well with the only 2 times a day, we will go to 20mg 2x's a day and add another diuretic to work in congunction with the lasix. I had hoped that we would be able to lower the captopril (this helps the heart beat more productively) but since his valve during the cath was leaking mild to moderately Dr. Byrum felt that it wasn't a good idea to mess with it just yet. If we get a handle on the edema then we can move to a once a day drug that works the same as the captopril. For some more good news, Tray hasn't vomitted at all in over a week AND he isn't on ANY medications for reflux!!!! The carafate was wonderful and Tray has done extremely well since the biopsy. We have our follow-up GI appointment on the 11th of July.
Nettie had her IVIG yesterday and did fine. We came home and the boys had arrived home from camp. They were exhausted. While they were sleeping I prepared Nettie for going out in the sprinkler. The boys woke up and we all went outside (very, very hot out). While the kids were playing and I was cooking on the grill, Nettie somehow managed to tip straight backwards in her wheelchair and cracked her head on the concrete patio. She was bleeding but not that bad. One of her beads in her hair had broken and poked her head, but luckily that is all that happened. She wasn't as playful as she had been, but she survived the ordeal (better than I did anyways!LOL).
As for the blood work I had asked her Nurse Practitioner to order. . . she declined, but on good grounds. She felt that the pediatrician would be the more appropriate person to make the referral to an endocrinologist and order the lab work. So I made an appointment for July 16th.
Well, that is it for now!
Joshua has his follow-up appointment with the dentist today and that should be it for doctors until next week! hehehe
Take Care and God Bless,
Renee
Saturday, June 21, 2003 11:23 AM CDT
Hi everyone,
Well, Joshua's infection free period has come to a crashing halt. Yesterday, I took him for his regular 6 month dental visit. We have NEVER had an uneventful dental exam. He always seems to have some major teeth issues that have to be resolved. Well, yesterday was no different. Upon exam, the dental assistant informed me that he had a large abcess. The dentist did a closer inspection and found that it is his baby tooth that is infected, however, the kicker is, he has NO adult tooth to come in after it. The chemo caused quite a few of his teeth to not form and this is one of those spots. In addition, the tooth next to the infected one, looks as though there is inflammation around it as well (it is one of the ones she crowned 6 months ago) and he may lose that one soon as well. This was an adult tooth, therefore he will lose 2/3 of his chewing surface on the upper left side of his mouth permanetly. That can't be good. He is a walking poster child for braces right now! LOL
But the fun didn't end there. While the dentist was writing the script for the abcess, Joshua mentioned causually that his mosquito bite was hurting his wrist. I looked down and was shocked to see a large cellulitis on the underside of his left arm. He had significant swelling, it was hot, hard and bright red. You could see where something had bit him. So rather than write the script for his mouth, the dentist sent us straight to the pediatrician. I called the immunology doctor and she felt that he should be admitted, but the ped and I felt differently because he was acting just fine for the most part. He is home on 2 high dose oral antibiotics. One is for his mouth and one is for his arm. We will follow up with the pediatrician on Monday to be sure the meds are doing their job.
I was irritated with the immune doc because she told the ped that we are going to treat Joshua just as if he had a perfectly normal immune systme since his t-cell test came back normal. However, we all KNOW darn well that he has never had a normal immune system and to think that it has magically changed is deluding themselves. I don't care who chooses to delude himself, but have a problem when it is one of his primary treating physicians!!! We were told that if he developed 3 or more infections in 3 months then he would requalify for the IVIG infusions. Well, Peter and I count this as infection #1 and #2. We did do blood work and a culture yesterday to be sure that he wasn't sicker than he looked. Since he has done well all night and looks fine today, I am assuming all is well. His arm does look A LOT better today!!
We are going to take the kids to see the HULK movie since it is raining (nothing new).
Tray and Nettie are still doing great. I called to see what the "team" decided regarding my request for the lab work to check her thyroid and growth hormone levels, but I didnt' get a reply yet. Tray goes to see the new eye doctor on Tuesday, followed by his 6 month dentist appointment. Then on Wednesday he sees the cardiologist to go over the cath results and the team's decision as to how we are going to approach his treatment. Then on Thursday, Joshua and Trayvon are off on their first day of Camp. It is a day camp and they go on different feild trips each day. They had a BLAST last year!! Summer school starts on July 1st. Peter and I will celebrate our 10th wedding anniversary on the 3rd of July! Amazing!
Well, that is the update for now. I'll let you know how the appointments go next week.
Take Care and God Bless,
Renee
Thursday, June 19, 2003 4:06 PM CDT
Hi everyone,
I'll take a few moments to drop a line and say "hi" while the boys take a nap and Nettie listens to her music in her room. It is rainy and dreary here.
Trayvon "GRADUATED" from preschool today. It was an adorable ceremony. Afterwards we went and saw daddy at work where Tray (attempted) to sing his "Rainbow" song and showed daddy his diploma and pictures. He was soooo happy today!! LOL
The kids are all doing well right now. I have lowered Trayvon's lasix to 30mg TID and he is doing ok on it. He has facial edema when he wakes up, but it is gone by afternoon and the goal is to only give him enough diuretic to "maintain" him and not necessarily to "correct" the problem. This way we will have options if he needs higher doses as he grows. On another positive note, the new medicine Tray is taking for his reflux has been a miracle drug! No kidding. This stuff called Carafate has complete stopped ALL the vomitting he had been doing. I haven't even needed to give him his Reglan. It is amazing. In addition, he is eating sooooo much food!! I think weight gain issues should be behind us really soon. Yeah for Trayvon!!
Joshua is doing very well and he and Nettie had their last full day of school today. Joshua sees the dentist tomorrow, but first he is being given an award at school for scholastic improvement!!!!! I am so proud I can't stand it. So he'll see the dentist after he goes to his award ceremony. Here's hoping that he has NO cavities this time. He had 8 last time. OUCH!
Nettie is doing well. She has expressed concern that she is growing up too fast. She has decided that he doesn't want to grow up anymore. I feel the same way baby. :-(
Well, that is it for now.
Take Care and God Bless,
Renee
Thursday, June 12, 2003 8:23 PM CDT
***NEW PICTURES ADDED***
Hi everyone,
Trayvon had his kindergarten screening today. He charmed the pants off of all of the reviewers!! They can't wait until he comes to school in September! LOL However, as socially engaging as he is, it didn't help him on his testing. :-( Out of a possible 173 correct answers he could have gotten on the pre-academic screening tool, he got only 39 correct. He only recognized the letters T and O in both upper and lower case. He also could only count to 13 and didn't know his birthday. Soooooo, I have taped the letters A, B, and C on the refridgerator and we will begin some SERIOUS efforts to help learn these skills. I knew/know he is behind in his skills, but I guess this caught me a little off gaurd. But, it hasn't slowed him down and we just have a lot of work to do this summer. I am determined to have him counting to 20 and knowing at least half of the alphabet (upper and lower cases) by September.
Joshua and Tray are doing well in their Jui-Jitsu class and may be going for a new belt in July. Both have earned a strip on their current belt. Little league is almost over, though several games had to be cancelled due to all of this blessed rain we have been recieving all spring. Joshua has done well with the rigors of going to school and then right off to either jui-jitsu or baseball almost everynight. Last year he was asleep on the bench half way through the game and he NEVER would have been able to do a second sport.
Joshua met with the Immunology Dr. today for a check up and all looks fine. She did begin her little speech about how we need to start to consider when the port needs to come out. But I stood my ground and stated that I need to see him make it a minimum of 6 months before we even consider having another surgery to take it out only to find at 7 months he needs the IVIG again. I am pleased to say that the Dr. agreed with me and we don't go to see her for another 6 months, but if he has ANY infections between now and then, we need to call immediately so they can document it. I am fine with all of that. ;-)
Annette is doing great. I talked with her NP and discussed with her my concerns regarding her lack of height and her "body shape". She was reluctant to agree that any testing would be necessary, but after stating my case, she digressed and agreed to take it to the "team". So hopefully next week I will hear if the "team" agrees to allow the blood work and x-ray that will show whether or not Nettie has a hormonal imbalance that we may be able to address. It will also show us if it is still possible to assist her growth with growth hormone.
Please stop by and see our new pictures!
Take care and God Bless,
Renee
Tuesday, June 10, 2003 9:56 AM CDT
Hi everyone!
Well, for now all of the tests and crap are over for Trayvon. He removed his PH probe this morning all by himself (with my permission). It was not nearly as positive as last time, but I didn't get a report because the doctor was in the OR so I have to wait for his call. The endoscopy was positive for bile reflux, but his esophagus looked ok, though they still did the biopsies to be sure there have been no changes to the linings of his throat, stomach and intestines. He also only had to have his right ear tube changed this time (he didn't even know we did his ear, I did that on purpose!). So now we just wait for all of the doctors to review all of the information that has been obtained in the past 2 1/2 weeks to see what we can do to help Trayvon. He is still gagging and vomitting regularly after most meals. If his reflux in fact is better than last time, it doesn't explain why he can't hold onto his meals. I began talking to the GI about an NG tube if Tray continues on his current path of oral intake. It would only be used to "supplement" his diet vs. using it all night long as his entire diet. That way he continues to recieve much needed calories and nutrition while still enjoying all of the foods he loves to eat, even if he throws them up.
Joshua goes to Brain Tumor clinic today. We will meet with several doctors to review his progress and go over his MRI results (which we already know are clear). On Thursday he goes back to the Immunology clinic for a check up. Thus far he has handeled being off of the IVIG much better than I had imagined he would!! Yeah! I love it when I am wrong sometimes. LOL So I think we will just have to go back in 3 months and then that will be 6 months off of IVIG and we can re-run his labs to see if in fact his immune levels are back to normal or if they still are faulty and he still has the potential for problems in the future. I won't let them take out his port-a-cath until I am sure we are in the clear (or at least as sure as I can be).
After learning alot about Growth Hormone Deficiency because of Joshua's treatment, I began to wonder about Nettie. I asked her NP how tall she though Nettie would grow to. 4'10"!!!! That's it! The Little People of America define a "dwarf" anyone 4'9" or less irregardless of wether or not they truly have dwarfism! I can not believe NOT ONE DOCTOR THOUGHT TO MENTION HER HEIGHT after all of these years of seeing them! I am trying to make her an appointment with the endocrinologist to be evaluated. Now that she has entered puberty (did so a couple of years ago actually) it may be to late to address her overall height, but they can address her unique physique. Apparently many children with either Thyroid or Growth Hormone Deficiency develop short stature with "pudgy" faces and bellies. Well that certainly describes Nettie! LOL I am e-mailing her NP to run the lab work at her next IVIG appointment rather than waiting to go to the endocrinologist so that the labs will have already been done and if there is anything wrong, it can be addressed immediately. I know what labs she needs because they are all the same ones that Joshua has had and will be repeated in October. It certainly helps to have one child pave the way for another doesn't it! LOL
I have been fighting one mean summer cold! But otherwise all is well. We went to the Relay for Life in Sauquoit and I did my speech at the luminary ceramony. I lost it less than half way through because Peter and the kids came along as well. When I introduced myself and then shared part of Joshua's story and mentioned that he was right below me on the track the whole place cheered, I lost it. When I lost it, so did Trayvon and Joshua because they had no idea why mommy was up on stage, with the big light on me, crying my eyes out. I think I traumatized them. OOPS. Oh well, it's time they knew their mother is a sappy soul. :-) Peter and I were suprised at the kids reaction but found it endearing as well. It appears Joshua is beginning to grasp a bit more what it means to have had a brain tumor and what being a survivor means.
Well, that is it for now.
Take care and God Bless,
Renee
Thursday, June 5, 2003 10:45 AM CDT
Hi everyone,
We've been busy, busy, busy. But sadly, poor Trayvon has not been feeling great. He started vomitting again after each meal and has begun to show increased fatigue and shortness of breath when playing. The cardiologist really doesn't know why and isn't convinced it is cardiac related. To complicate matters, he is not able to have his reflux medications due to his endoscopy and biopsies on Monday. But even if it is just his "reflux" causing all of this vomitting, it still doesn't explain the tiredness and shortness of breath. I am very frustrated with everyone and everything because in my heart I know that something is wrong. I just don't know what. I have once again attempted to contact Dr. Fethke in NYC to see if he has any input, but I feel like I am going behind Dr. Byrum's back when I do that. I trust Dr. Byrum to take what I say seriously, and I whole heartedly believe he wants to do the best for Trayvon. I just don't know if he actually "has the answers". Trayvon has also developed a cough (probably from the reflux that sits in his throat all the time) that keeps him up all night. I finally was able to get him to sleep in my bed last night after propping him up against several pillows and letting him play with my hair.
On Monday he will go in at 6:30 am for his endoscopy, biopsies, new ph probe and replacement of his ear tubes (for the third time). While talking to Trayvon's teacher who had called to check up on him, Tray overheard me tell her that he wouldn't be in school next Monday or Tuesday becasue he would have to go to GI to have the PH probe removed. He started crying immediately saying "I don't like the tube, I don't like the tube!!" It was sooo sad that he is now so scared of ALL doctors because we keep having to take him in and doing all of these invasive tests to his little body. I am not new to this, but neither Joshua nor Nettie were EVER so anxious about their medical care or appointments. With the exception of shots, neither of the other two could care less what gets done to them. Joshua LOVES to get his "white medicine" and actually asks for MRI's and tests!! Nettie is very apprehensive 0f MRI's if she has to do it awake, but if she knows she will be asleep, then she doesn't care.
Annette and Joshua are also now very aware of Trayvon's medical needs. Nettie frequently says "I wish I didn't have a brother that throws up all the time and didn't have a sick heart so you don't have to go away Mommy." I am quick to remind her that I LIVED in the hospital with her for almost 2 years when she was his same age and that she was the QUEEN OF REFLUX!! She then wanted to know why only "adopted children have reflux, because Joshua doesn't!" That took a bit more time to explain. Joshua on the other hand LOVES his little brother, but commented yesterday when Tray was down for one of his long naps, that "I could be ok again without a little brother. I was ok before." I asked him if he wanted Trayvon to leave and he said that he didn't, but that if he did, he would be ok. LOL I explained to him that once someone is "adopted" they are part of our family FOREVER. Then I asked him who he would play wrestlers with, who would he ride his bike with and who would he play "pretend" superheros with? His answer was "I would not be ok with Tray gone, but I would be ok with him here if he woke up so I can play my game (his playstation is in the bedroom where Tray naps LOL)." At 7 years old, everything is so black and white still. LOL
This weekend we are going to Utica, NY to join our good friends, Craig and Colene, as they do their 3rd Relay for Life in memory of little Breanna. Oh how I miss that little girl. She would have turned 7 years old on June 2. She and Joshua were just 6 months apart and spent a great deal of time in the hospital together. We met them on the very day Breanna was diagnosed with Neuroblastoma, stage IV. She fought soooooo very hard, but lost her battle when she was only 3 years old. I will be doing a speech at the Luminary Ceremony that night as we remember all of those whose lives Cancer has touched. I am very nervous, but know it will be good for me to do as well.
So, for now,
Take Care and God Bless,
Renee
Friday, May 30, 2003 8:07 PM CDT
Hi everyone,
Well, the catheterization is over!! It went. . . well, let's just say it went. Upon arrival Trayvon was strung so tight about being in the hospital again that EVERYTHING made him cry. I asked the nurse to see if he could have some valuim to bring him down a little, but the doctor felt that with the other meds it would be to much. Little did they know. Trayvon NEVER fell asleep despite having 50 mg of Benedryl (that's an adult dose!), 5 mg of valuim, 2mg of morphine, fentynal, versed and finally, as a last resort, they called the anesthesiologist in for complete sedation. They were minutes away from calling the whole thing off, but they had already given him sooooo many meds that they felt it was best just to do the cath with the help of the anesthesiologist than to bring him back and do it all over again.
Ok, ok, the results. Well, first the good news. His heart does in fact look GREAT! It is NOT a heart issue, well, not directly.
Now, the bad news. Trayvon's veins that accept the blood going back into his lungs after leaving the heart, are to stiff. This is causing the blood to back up and "displace" into other areas which for him is his head and belly. There really is no treatment for this problem except what we are already doing. I really don't know alot about it other than it is called "Pulmonary venous hypertension" and it can result in right heart failure. That is a BIG problem because Tray only has a right side of his heart. Dr. Byrum, Trayvon's cardiologist, is going to present Tray's case to the entire team and they will discuss the options we have. It is his hope that as Trayvon gets older and his lungs get larger, these pressures will drop and the problem will self correct itself. I don't know how likely that is, but it is the doctor's hope. I really don't know the long term implications of all of this.
Joshua and Nettie are both doing great!
Take Care and God Bless,
Renee
Monday, May 26, 2003 8:04 PM CDT
UPDATE:
Just picked up Trayvon from Daycare. He had another Migraine. Poor thing still feels yucky even after vomitting this time. After the catheterization on Thursday, I think it will be time to go back to the neurologist to see if we can get a prophylactic medication to help head these off.
Take care,
Renee
Hi everyone,
First and Foremost. . . Joshua's MRI was CLEAR!!!!!!!!! No signs or evidence of any recurrence. Thank you GOD!!
It's been a fun but long weekend. On Thursday we left for Virginia to see Peter's brother, Perry and his new house. Though it rained quite a bit, it was still a very nice and relatively relaxing weekend. I did however, have a very bad reaction to strawberries (though I didn't figure out that it was strawberries that were causing the problems until I ate them three different times). I spent most of Friday nite on/over the toilet or sleeping on the bathroom floor. I felt better the next day and then had a yougurt with strawberries in it and began to feel bad, a few hours later I had some strawberry cheesecake and that night I awoke with violent cramps and diarreha again. I haven't had any strawberries since and have felt fine. I LOVE strawberries!!!! Bummer. . . oh well, could be worse.
the kids all had a great time with Perry's girlfriend's kids.
Today we had a very nice cookout (actually, we just cooked out in our rain ponchos) and ate inside. Peter's sister and her family and my mother, father and sister came over.
Tray awoke on Thursday with a definate increase in his facial edema so I called the cardiologist to get permission to increase his diuretic one more time. He agreed that at this point it is only beneficial to go ahead and increase it as needed. He and I are both very interested in what the cardiac catheterization will show this Thursday. I went ahead and called NYC and spoke to his old cardiologist to let him know that Trayvon has been having significant problems again. He was very suprised to hear that he had been having problems and promptly called our cardiologist up here and faxed him the results of the last catheterization Tray had last year.
Nettie is doing well, she is every bit a teenager. She LOVES to just go up in her room and listen to her radio LOUDLY and write in her journals. She is soooo funny to talk to. LOL
Joshua is doing well and had a great time with his cousins today at our cookout. He wished everyone a "Happy Memorial Day". This morning while I was washing dishes he asked Peter and I to "have a minute of silence for all of the dead soldiers and generals in the armies". Peter and I stood there with Joshua in the kitchen while he stood at attention and we had a moment of silence. It was adorable and touching and humorous all at the same time. He is such a sensitive child.
Well, that is all for now. Please remember Trayvon in your prayers this Thursday. He needs them. I am truly afraid of what they are going to find.
Take Care and God Bless,
Renee
Wednesday, May 21, 2003 8:51 AM CDT
Hi everyone,
Well, we had a great weekend!! We threw a graduation party for Peter's best friend, Steve, who just recieved his Doctoral in Philosophy. We had about 80 people come and it went wonderfully smooth and everyone had a great time. The next day we took Peter's mom and dad out to breakfast to celebrate Mother's Day since the weather on actual Mother's Day was awful! Then my sister came and babysat while Peter and I went to a benefit for a little girl who was diagnosed at the same time Joshua was in treatment. Though she is still in remission from Neuroblastoma, she has to go back to NYC every 3 months for extended stays due to testing and evaluations. The family has more than $80,000 in unpaid medical bills. I can appreciate that situation completely. We had $250,000 in bills because the insurance company completely refused to pay for Joshua's stem cell transplant, so we had no option but to file bankruptcy. That is why it took us so long to actually buy our house.
But that chapter is behind us. Joshua had his MRI on Monday and all went very well. Peter is going to call today to see if he can get any results from Dr. Dubowy. I am very confident that all is perfect. His next MRI isn't for another YEAR!!!! Way to go Joshua!!
Nettie has done very well the past few days. We started her back on her Nexium and her g-tube feels much better. She is excited about her 5th grade feild trip tomorrow to Howe Caverns.
Joshua has begun to drag to the point where his coach for baseball is noticing it. He is sleeping later in the morning too and still dragging by mid-late afternoon. He is also breathing through his mouth again instead of his nose, and he sounds congested. I am sure he has a sinus infection. His body is sooo used to them however, he hasn't run a fever in over 2 years, and he has a high tolerance for illness related pain, that it is hard to show him to the doctor and tell them he is sick. He just always looks "well" even when he's pretty sick. Soooo frustrating.
Tray is home with me today. He has had an eventful couple of days. Last Wednesday night he was up with painful stomach cramps. He had several bowel movements, but no actual diarreha. The next morning, I let him stay home with me and took him to a meeting I had to go to becuase he had had so little sleep the night before. While in the middle of the meeting he started to say his head hurt. UH OH, flash back to January!!! Sure enough, as the hour went on he got progressively worse and worse, I started to dress him for the ER when he got really lethargic and less responsive, then out of nowhere he vomitted, ALOT! And then he was fine. I took him to the ER anyways just to be on the safe side since the last time I took him to the Dr. for the same thing, they told me to take him straight to the ER. There they did a CT scan of his head which was normal as well as lab work which was also normal (except for a slightly high white count). We waited 5 HOURS for a neurology consult which told us she is pretty sure he is having something called "abdominal migranes". The blood vessles in his abdomine constrict first (frequently causing severe vomitting or diarreha for some kids) and then the head vessels begin to constrict and spasm, vomitting almost always releives the symptoms. So added to his list of maladies now is Migraines. Today he is home with me because he woke up with a bad ear ache and he has drainage coming out of his ear. So we see the doc in just a couple of minutes. Fun, Fun. His cath is next Thursday. Today he is VERY puffy, the worst in 2 weeks since bumping up all of his meds.
Well, that is it for now.
Gotta get ready for the doctors.
Take Care and God Bless,
Renee
Wednesday, May 14, 2003 12:52 AM CDT
Hi everyone!
It's been a whole 2 days and already some new info has come downt the pike line! LOL
First Annette did a FANTASTIC job on her concert!! I couldn't have been more proud. She was so beautiful sitting up there with her legs all crossed like a young lady. We didn't have to figure out how to manage both of us being at the concert after all because Joshua's game was cancelled. BUT. . . not for weather (which it probably would have been for that too) but because there is a RAT infestation at the park!!!!! And believe it or not the rats are attacking the park workers trying to cut the grass and stuff. Very scary and very movie like????
Joshua has been doing better since we gave him benedryl the past 2 nights to get him down and asleep a bit earlier and has stayed in bed a bit longer in the morning. The extra sleep has definately had a positive impact on his behaviour, though his eyes and nasal congestion tell me something is brewing. But hopefully he will be able to kick it again like he has these past 2 viruses.
I also received an interesting call from his Nurse Practitioner that he saw at the KNOT (Kids Now Off Therapy) clinic. She called with the results of his growth homone study which showed a definate, thouhg mild, deficiency. She wants him to come back in October to repeat the lab work and have an x-ray of his wrist to determine his actual bone age. If it is, as she strongly suspects it will be, below normal, Joshua will start Growth Hormone Shots nightly. Now, anyone who knows Joshua, knows how big he is and probably are asking why would he need them. Well, the answer is simple, he is suppose to be big, that is his genetic make-up. If we let him stop and significantly slow down in growth velocity (upwards not out) then he will never reach his "normal" or God Determined (or genetics, which ever you prefer) height. When he was 2 we were told by the doctor that based upon his height at that time, he will grow to be 6'4" (Peter's 6'3") so that sounds about right. If we don't intervene with the growth hormone shots then he will not see 5'8" at this rate of growth. That's a huge descrepency and not one that I am will to accept. Radiation is the reason for this growth issue and therefore it is only right to correct this problem as you would any other side effect of treatment, irregardless of how large a child "looks" at the time of diagnosis. Sooo, we will once again, have to take the "wait and see" approach.
In other news, Nettie has another g-tube infection. So we called GI to ask if he could please put her back on the Nexium to reduce the acidity of the stomach drainage so it isn't so corrosive to the area of the tube. He happily agreed and today she is feeling much better.
Tray woke up once again with facial edema. I will be SOOOO HAPPY when the 29th arrives and he has his cardiac cath so we can see what in the heck is going on with this kid!
Other than the transmission going completely bezerk in the toyota and Peter having to wait on the side of the thru-way for a tow truck this morning, nothing else is really happening. I get to pick dinner tonight because it is my birthday so I think may some ziti is on the menu. Hmmm, yeah, that sounds good, a little Italian food!
Take Care and God Bless,
Renee
Monday, May 12, 2003 4:47 PM CDT
Hi everyone,
It's been a little while since I last updated, for that I am sorry. It has been a little chaotic here! LOL
First,
HAPPY MOTHERS DAY moms!!!! Stop, give yourself a little pat on your back and take a deep breath, your doing a great job! For mother's day we went to Kahunaville for lunch and then we took the kids to see "Daddy Day Care" at the movies. It was a cute movie. It was a nice relaxing day, albeit, a very wet and rainy day! LOL
The kids are doing fine right now. Nettie has her concert tomorrow night so I had to buy her a nice dress to wear. She is soooo excited for us to see this concert. Unfortunately, Joshua has a little league game at the same time, so we are working on figuring out how to get us both at the concert and then to the game, YIKES!
Joshua had some problems in school today. He has looked a bit under the weather the last 2 days and now his behavior is poor, very typical before some sort of illness. This will be his third in 2 months. Sighhhh.
Tray is doing well with the increased medications. I think I told you the doctor increased his lasix to 3 times a day to be given with the double dosage of captopril. I have to take him in to have some bloodwork done soon because the increase in diuretics can leave you deficient in potassium. His cardiac catheterization is scheduled for May 29th. He is going to be admitted after all. Originally Dr. Byrum was just going to do it outpatient, but felt that since Tray has had problems in the past with caths and does NOT wake up well from the anesthesia, it would be better to watch him overnight. He is scheduled the following week for his endoscopy, biopsies, repeat ph probe, and replacement of his ear tubes on June 9th. Poor thing, always has something going on. He also has an eye appointment the first week of June. He will have his left (the lazy one) eye checked and if it is stronger then a prism will be added to the right lens. The teacher of the visually impaired called me and told me that with the addition of the prism to the glasses, he will qualify (and will need) some services to help him adjust to "using" the glasses while doing complex tasks, such as writing, pre-reading, math etc. I never thought of this and was glad his teachers are so on top of his needs. I thought that once the prism was in, that was it. Apparently it is very difficult for children with prisms to process writing and symbols. See, I am always learning!
This weekend we are having a big party for Peter's best friend, Steve who is graduating from his doctoral program. We will have about 50 people here to celebrate this big day with Steve. But it is a bit overwhelming to do everything that needs to be done. AYE!!!!
Oh yeah, as you can see I tried to add some pictures to the front page. However, for some unexplainable reason, several extras showed up and I have yet found a way to extract them. If you have any ideas for me PLEASE let me kow!! LOL
Well, that's it for now.
Take Care and God Bless,
Renee
Monday, May 5, 2003 7:44 PM CDT
Hi everyone!
Ok, so I lied. Tray's new pictures of him in his new glasses didn't make it on the site yet. I picked them up today and will get it on there tomorrow so come back and check him out!!
I spoke with the cardiologist today and Trayvon will have a cardiac catheteriazation as soon as an opening becomes available. He also increased his Lasix to 30mg three times a day to be given with his captopril. The cardiologist agrees, Trayvon is slowly slipping into more and more trouble and we need difinitive answers RIGHT NOW to see what is really happening with his little heart. Strangely, I feel very relaxed with this new turn of events. I know there is nothing that I can do so why worry before time.
In addition the poor things reflux meds stopped working over the weekend. He had enjoyed a wonderful lunch at Friendly's and was working on his sundae when he "lost his lunch" literally. If felt so bad leaving that mess under about 50 napkins on the table and bench! YUCK. The poor waitress earned her tip that day. Then he vomitted up his morning meds so I called GI and asked them to bump up his meds to get him through until his endoscope 6/9. They did and he will now get his Reglan 4 x's a day at a slightly higher dose. I hope this will hold him till then. :-) It's not pretty when the meds don't work!
Joshua appears to be making a small turn for the better. He made it through school without a nap and even felt well enough to go to a friends house after school for dinner. He is still very congested and has very thick green drainage from his nose. I will just keep our appointment with the pediatrician on Friday and most likely by then they will treat him for the sinus infection I am sure he has.
Nettie has a new problem that has arisen. She has had an on again off again type rash the affects the lower left side of her chin. But in the past 3 days this rash has started on her forhead (between her eyes) and on her upper lip. Her lip is definately the most affected and it is swelling a bit. So she has an appointment to see the doctor on Wednesday morning. She will also see the dietician the same day to address the ever present and problematic weight gain. Now, mind you, I am totally, 100onviced that her weight gain and increased stomach girth is related to a yet to be determined problem. But the clinic wants her to try some "excercise and diet changes" first. Ok, but I hate when I have to say "Told you so!". Hopefully they will have something to help her lips and face feel better. She will also be getting her NEW WHEELCHAIR on Wednesday!!!! Nettie looks like a giant her current chair that is 2.5 years old. So we have a new "razzleberry" chair coming. On Wednesday Nettie will also be taped for the local news channel. She is going to be used to demonstrate the need for a Pediatric Respite Home for Medically Fragile/Developmentally Delayed children. I have been very active in this project. I will let you know when it is suppose to be on.
Well, that is it!
Take Care and God Bless,
Renee
Saturday, May 3, 2003 5:01 PM CDT
Hi everyone,
Well, another weekend is upon us. And none to soon!!! LOL Yesterday was another one for the books for poor Trayvon. What was suppose to start out as a simple eye doctor visit to determine if he has a visual field deficit, turned into an all day excursion resulting some very surprising results and new glasses (see new pictures).
After waking up and discovering that Tray (and not the rabbit as we had suspected) was the one that failed to heed natures call to go to the bathroom on the potty, I showered him, and dressed him for his doctors appointment. Noticing with great displeasure that...first - he slept in wet undies all nite on the freshly washed sheets I had changed only an hour prior to him going to bed; and second - his eyes have been swollen for the past 3 days despite the increase in medications. Then, I argue with Joshua, who still feels like crap that he DOES have to go to school and therefore has to do his homework before getting on the bus. So fight, fight, fight, homework, homework, homework. I won. Send Nettie and Joshua on their way with a quick call to the school nurse to let her know about Joshua's day at the doctor's on Thursday and to call me if he gets progressively worse as the day goes on.
Then, shower and dress myself. Off to the "functional eye test" with Dr. Levinson. No big deal, but Tray doesn't agree and starts to cry the minute we step foot in the room. I calm him down with cookies (kindly provided by the doctor's office since I am a completely incompetent mother and didn't think to bring any bribes with me) and get the preliminary tests done with minimal protest. Go to another room and meet with the doctor. . . new set of tears, more cookies. . . doctor wants to see Tray walk the hall way several times. Trayvon eagerly displays his walking talents and smiles at the pretty nurses the whole time. Note, I have seen Tray walking for over 2 years now, I am not suprised by the zig-zag approach he takes to walking a hallway, nor have I been notably impressed by his lack of awareness when turning a corner, that's just Trayvon. Ahhhhhh, but NO!! There is a name for this "mid-line vision shift syndrome". I should have known!! LOL Back to the room. . . one more last set of tears as the dialating drops are given, more cookies and a 15 minute break to watch Blues Clues. Go back to the same machine we did when we first came in. Off to another room to meet with the doctor again, this time no tears. He is VERY concerned since Tray has a very severe astigmatizime in his left eye and probably isn't making out more than shadows. WHAT!! Sigh, deep breath. It gets better. Tray also has definate signs of stroke damage to his vision center as he also has something called nystygamus (rapid jerking movements of the eyes) whenever he tracks and object up or to the side. In addition, the doctor is fairly confident he has this mid-line vision shift syndrome. Simply described: you and I see things mid-line down the bridge of our nose. Tray's mid-line is approximately in the middle of his right eye. Thus the reason he over or under estimates where the doorways are, why he walks a zig-zag pattern and why he holds his body in a slightly sloped manner (to him he is standing straight since he is basing straightness more to one side of his body). Very, very interesting. What to do??? First and foremost, he got glasses to address the severely lazy left eye. He looks great in them and doesn't complain at all about wearing them, so he must see fine out of them (boy are they strong!!). Next, in 4 weeks he goes back and gets tested again to see if his eye is responding better, if it is, they will add a prism to his right lens to move his mid-line back to the middle of his body. The problem with this is that we can't see out of Trayvon's eyes and he has to tell us somewhat how well things look. So that should be an interesting process.
Soo, you can see it was another eventful and exciting new day at the Curkendall's. LOL
I have a call right now into the on-call doctor's office to find out what Joshua's lab results were since he is still struggling at night. He does ok during the day (just sounds like he has a bad cough) but at night the croup kicks in and he struggles a lot more.
I know if it comes back something other than allergies, they will want him to go to the ER, but we know that I won't oblige them that, and will wait until Monday for the clinic to open. Boy that will make them mad. Oh well, they should have called me Friday when they were in clinic huh.
Peter and I went out to his company's black tie even last night and had a very nice time. We had our pictures taken and I look forward to posting them on the web for you to see. Finally, a picture I won't mind sharing with you of me! LOL
Well, talk soon and God Bless,
Renee
Thursday, May 1, 2003 1:14 PM CDT
Hi everyone!
Well, today was suppose to be Joshua's MRI day but alas, it wasn't meant to be. He started with a slightly runny nose last evening which rapidly progressed to coughing, croupy cough, severe nasal congestion and a swollen left check. I thought maybe he was having an allergic reaction to the cat he was playing with earlier, but the symptoms did NOT subside with Benadryl. So off to the doctors after I canceled our clinic and MRI appointments. The pediatrician consulted with the immunology doctor and they felt that he was having some sort of allergic response as well. But they ran blood work (which I asked for them to run an IGE level - this is the antibody that rises in response to an allergic reaction) and a viral battery (they culture the mucous in his nose to see if they can identify any viral infections). Hopefully we will be able to identify clearly whether or not this is a true "infection" or some sort of strange allergic reaction (though he is not allergic to anything according to an extensive allergy workup he had 2 years ago!). He also has pettechia all over his wrist and arms (pin point size spots of bleeding under the skin) which usually occurs with viruses or very severe bacterial infections (but he looks to good to have a severe infection). So most likely it is viral. We shall see tomorrow when the lab work comes back.
Nettie is at the hospital now with her nurse (I hate when I can't be at the kids appointments with them!!!). She is getting her IVIG and will be seen by the Nurse Practioner to determine if she needs some additional time on the antibiotic. She is complaining of feeling "like my brain is spinning and the room looks all funny" as well as having a decreased appetite again the last couple of days. She finished her antibiotic 3 days ago and lo and behold, that is when she started feeling yucky again.
Tray is doing ok. I talk with the cardiologist daily and we are still increasing his one medication incrementally as long as his blood pressures stay in the normal range. We are up to 2 full Captopril pills three times a day, he was getting only one 3 times a day last week. His facial puffiness has improved some since the increase, but strangely his blood pressures are NOT coming down with the increased medications, so the doctor is now feeling that maybe the b/p numbers Tray has been getting are in fact "too high" for him and he has been having high blood pressure for a while thus the reason for the fluid build up. We may try increasing this medication even more or adding another one or switching to a stronger, longer releasing medication. I am expecting a phone call any time now from his doctor to tell me what he wants me to do.
Never a dull moment here in Curkendall Country!! LOL
Hope all is going well for your and your families.
May God shine down on you and light the way.
Take Care and God Bless,
Renee
Monday, April 28, 2003 1:22 PM CDT
Hi everyone!
The weekend was a blast as well as exhausting!!! But I have to say, I had more energy than some of the girls!! LOL Nettie had a really good time and it was a wonderful experience for her to go with all of her typical peers on this trip. She does camp and everything, but everyone there is there because they are medically needy and therefore she never really has the opportunity to interact with "normal" children in such enviroments. I also enjoyed watching her interact with the other girls and really tried to stay "away" whenever I could to let her do her thing. She wasn't feeling well by the end of Sunday and her g-tube had continued to bother her a lot throughout the weekend. Hopefully we are making some progress on this infection.
Joshua and Trayvon had a wonderful, busy weekend with daddy. I was very proud that Peter did so much with them and had the house looking very good when we arrived home. Thanks Honey!!
Joshua has his MRI this Thursday, Nettie has her IVIG on Thursday and Trayvon has kindergarten registration on Thursday nite!! Hey, might as well get everything done all at once so it is out of the way! LOL
Trayvon is doing well on his new increased medication and his blood pressure didn't change at all which is one of the primary side effects we were worried about. As a matter of fact, his bp went up a bit! LOL He is still slightly puffy, but we (Peter and I) are going to wait 2 weeks to see just "how" puffy he gets while on this before requesting the catheterization to be moved up sooner. If he stays nice and stable then we will wait until June as per the recommendation of the cardiologist. Here's hoping that is the way it goes so we can give him a bit of break this month from all of the medical crap.
The weather her is beautiful today and I am getting very excited for the good weather coming. It is about time!
Well, I think that is about it for now. Nice and short this time! :-)
Take Care and God Bless,
Renee
Thursday, April 24, 2003 3:47 PM CDT
Hello everyone!!
Again, another busy day. Some good and some not so good things happened.
As I stated last update, Tray was doing the facial swelling thing again. I finally felt like it was time to confront the cardiologist and try to pin down an explenation for this happening. After going over my concerns; presenting my feelings of confusion as to why his medications have been continually increased rather than decreased and yet he is still symptomatic; expressing my frustration as to why other children with virtually identical anotomical make-ups and identical surgeries, are on almost none or no medications. He listened and we discussed once again his suspicions that Tray has a restrictive issue involving the right ventricle. I then wanted to know what happens 2 or 3 years down the road if he is already having this much difficulty now. He just looked at me and said 3 choices, nothing, transplant or undo the fontan and revert him back to a surgery he had when he was an infant. The problem is, he didn't do well with that surgery and thus the reason we moved forward with the Fontan surgery. So that leaves options one and two. I always knew that, have even mentioned it on here before that I always suspected that Tray hasn't conviced me yet that he won't need the transplant. However, it is sooooo much harder hearing a doctor suggest to you this is the path Trayvon appears to want to take. He is recommending scheduling another cardiac catheterization (Tray's 8th) in June. He increased his one medication Captopril to the maximal dose he can have right now with the hope it will help reduce the fluid load his heart will have to deal with. But if the swelling continues he will have a cath scheduled sooner and they will measure the pressures in his heart and pulmonary arteries to be sure they aren't too high. If they are, then we will have to talk about the next line of treatment and I am sure that will neccessitate another trip to NYC for a consult. UGHHHH.
Now, that was the bad news meeting for me. For Trayvon, it was a nice simple appointment with NO ouchies. However, following that appointment it was time to go over to the pediatrician's office for his kindergarten immunizations! 2 in one arm and one in the other. OUCH!!!! He was so brave, bless his little heart.
Nettie and Tray then had their pictures taken with Carmelo Anthony and another Syracuse Univeristy Basketball player for a photo shoot that will be used in a new brochure for the Children's Hospital we are building. It was pretty cooooooool.
Tomorrow morning Nettie and I leave for Philidelphia for 3 days with her girl scout troop (and about 12 other ones! YIKES). So I freshened her braids up and have to go pack.
Take Care and God Bless,
Renee
Tuesday, April 22, 2003 8:42 AM CDT
Hi everyone,
I hope everyone had a very HAPPY AND HEALTHY EASTER!!! We had a very nice time with my family coming over all day Saturday and Sunday. Sunday we had a nice brunch and the kids got to play outside in the beautiful weather.
Nettie is starting to show signs of improving, however, her g-tube is still hurting her a great deal. We are trying some Zantac now to see if this will help reduce the amount of acid that is leaking out around the site and maybe that will help to decrease the pain she is having. Overall however, she is sleeping less and her appetite is back in full force. She is very excited about her trip to Philidelphia with the Girl Scouts (I'll be going too) this Friday, Saturday and Sunday. Lord help me!! LOL
Joshua is doing well, though his night time cough is still lingering on and on. I haven't taken him to the doctor yet though and he seems to be doing ok without any medications. His MRI is on May 1st and then he has Brain Tumor Clinic on May 8th. I feel very confident that all will be just fine, but those nagging doubts get louder and louder with each passing day! Hurry up and get here May 1st so this stupid scan can be over and done! LOL
Tray is doing well for the most part. I have become concerned again, because he is waking up very puffy each morning once again despite the medications. He is also beginning to cough more and that almost always goes with the increased puffiness. I called the cardiologist and told them I want an appointment first thing in the morning either tomorrow or Thursday so they can see him looking at his worst. Usually we have a late afternoon appointment and by then he has had 2 doses of his diuretics and has been up and running around and looks fine. I want the nurses and doctors to see him when he looks like a blowfish! LOL They should be calling back in just a few minutes. If there are no answers forthcoming after our appointment, then I think it will be time to re-visit NYC and see the clinic down there. I won't make it a real issue if we see someone else instead of Dr. Fethke, as he NEVER called me back when Tray was having this same issue before. I left 6 messages for him and not one call back to me. So I think we'll just make an appointment for the clinic and take whoever we get down at Babies Hospital. At least the surgeon can review his echo and see if he sees anything.
Well, that's it for now! Gotta go to work for a bit and then clean my house!!!
Take Care and God Bless,
Renee
Friday, April 18, 2003 9:48 PM CDT
Hi everyone,
Well, as hard as it is for me to believe, Easter is upon us already. I can't imagine where the last 4 months have gone!!!! LOL After a very nice weekend at my mother's with Annette. It was a busy, but none-the-less enjoyable week for the most part. Nettie was the only one that really seemed to be not enjoying her vacation as much as we thought she would. So much so, that today we decided she had to be seen by a doctor to see what was up. She has been sleeping a GREAT deal (going up for a nap at 3:30 and sometimes not coming down at all for the rest of the night!), not eating well (refusing favorites like grilled cheese and pizza, NOT NORMAL) and just in general she looks off especially her eyes and g-tube. So we went today and saw the ID clinic where we discovered that back in February when her g-tube was bothering her a lot, they cultured it. Lo and Behold it had come back very positive for psuedomonas and strep. NO ONE CALLED!! So this infection has been brewing for awhile now and no one (namely the NP that took the culture and cares for Nettie most of the time) called to say she had an infection and she needed to be treated. I was not happy. So now she is on a heavy duty antibiotic 750 mg of Cipro BID x 10 days to kick this g-tube and sinus infection once and for all. If she still looks and feels punky after the antibiotic they may do some more in depth testing and bump up her IVIG infusion to help her.
After the doctors I took the Joshua and Nettie to see the movie Holes. I had dropped Tray off at daycare because I didn't think he would like waiting at the docs with us while Nettie was seen. It was nice just having the 2 older kids and doing an "older kids" activity with them. If I had had Tray we would have gone to see Piglet's Big Adventure, which I am sure is wonderful, but not what Joshua and Nettie wanted to see! LOL Holes was cute and fun to see, but Tray would not have agreed (LOL).
Tomorrow the kids go to Peter's work for the annual Easter Egg Hunt and visit from the Easter Bunny. Wonderfully (and sadly) ALL 3 children still very, very much believe in the Easter Bunny. Sadly in the fact that though Annette is 13 years old, she is still such a little girl in soooo many ways. At times like this it is a clear reminder that her brain is still that of a child and as precious as that is to me, it is going to hurt her soooo much more when she is finally "enlightened" by a not-so-nice peer that these fantasy figures are not real. Joshua is still more nieve than his peers as well and I think that he is going to believe whole heartedly for several more years to come. And Tray. . . well who can question the reality of the Easter Bunny and Santa Clause if your 2 older siblings are telling you that they are very much real!!! LOL
My family will be in town this Easter and the whole gang is going to be here to enjoy an nice Sunday Brunch. This will be my first "gathering" in our new home. It sort of feels like we are now officially here and it feels great.
We were able to enjoy a wonderful picnic this past week, a beautiful walk through our village and a nice trip to a book store in town, as well as a nice day at home with the two boys, as Nettie and her nurse Joanne went and visited a mutual friend of theirs from school.
Thank you God for my wonderful week.
May you all have a wonderful Passover/Easter/Spring Weekend.
Take Care and God Bless,
Renee
Sunday, April 13, 2003 6:12 PM CDT
Hi everyone,
Still moving in high gear here. LOL I know, my updates lately have been quite long. Unfortunately and fortunately, there has been so much going on lately!!
Well, let's pick up with Friday. Tray had his appointment with the ENT. It started off soooo nice. Tray sat calmly while he looked in his ears. Usually this illicites a very violent and not-so-nice behavior. But not on Friday. However, his was NOT clear and the doctor really needed to try and clean out the tube before making the decision to take him to the OR and replace his tubes for the THIRD time. So we swaddled him in the sheets like a mummy again and then put him on the papoos board and strapped him in. Tray was once again, tortured by another doctor trying to help him. It was soooo sad. Sadly, the results were not successful and he still will need to have the tubes replaced in the OR. We will be sure to schedule the procedure in conjunction with GI when they do his scope and place the PH probe again. That way we only have to put him under ONCE.
On Saturday Nettie and I left for our long awaited to trip out to see my mother in Lake George. Nettie has been talking about this trip for months. She couldn't wait until we went and "shopped til we dropped". Actually she got to spend some of her birthday money. Which she was remarkable thrifty with once she learned just how fast it would go if she shopped the way she wanted to. LOLOLOL I had the opportunity to look for some house things that I have wanted to get for a bit, but wanted to wait until I went to the "Christmas Tree Shoppe" in Albany. I LOVE THAT STORE!!
We had a very nice weekend and Peter really had fun with the boys while the girls were out playing. In 2 weeks I will be travelling to Philly with Annette's girl scout troop. Nettie wouldn't have been able to go if I hadn't agreed to go so we're off again in 2 weeks. More daddy time for the boys!!
I don't have any lab results back for Tray's liver or kidney function tests nor for any of Joshua's blood work. If I get it tomorrow I'll write again.
God Bless our Troops and may they all return home safe and sound to a safer and more secure world.
Take Care and God Bless,
Renee
Thursday, April 10, 2003 9:07 AM CDT
Hi everyone,
Well it has been a very busy past couple of days.
First, I need to pre-empt this update with a brief comment or two. I am very in tune with my kids. Sometimes to in tune. I will frequently note small changes that no one else notices. However, rarely am I concerned about these small changes, just the big ones. But in the past couple of years, when I have made a comment to a doctor on a "small" change that I may have seen, it has turned out to be a BIG PROBLEM. So I try not to "see" things as well now. LOL An example would be when I made a subtle comment to the cardiologist that Trayvon was slightly more tired than he had been a couple of months earlier. Lo and behold, he needs major reconstructive heart surgery! This is just one of many different times this has happened. My husband calls the intutive curse of mom. LOL
So onto our week with that info in mind.
MONDAY: Tray goes to see the GI doctor. Now, I made this appointment because he has been vommiting (always has since he has been with us)more frequently and the school is trying to say that he can't stay at the school if he vomits. So I had the doctor's office fax a letter to them saying that he vomits for a medical reason called reflux. Now I should also note that Tray had a test called a PH probe done about 18 months ago that was "normal" so technically he doesn't have reflux, but has always vomitted, so the doctor agreed to write the letter if we came in to see him on Monday. Ok, ok, ok, back to Monday. I tell the GI doc that Tray vomits almost every meal but that we were also suspicious that he is a "stuffer" (likes to stuff as much food in his mouth as he can and this makes him choke). When he is with us, he trys to eat fast, but is more sly about the quantity of food he tries to eat. The doctor decides it would be wise to do another PH probe. This is when the insert a long flexible tube down the nose and stop just before entering the stomach. At the end of the tube there is a sensor that can tell just how much acid is leaving the stomach and entering the esophagus (where there shouldn't be any food) and just how often and how long this happens. All of this info is recorded into a little computer he wears in a fanny pack. We decide to leave it in place for 2 days instead of just the one like they usually do. Then the doc decides he wants to see an upper GI as well. (notation: Tray recieved the dubious honor of being the VERY WORST PATIENT IN THE HISTORY OF THEIR OFFICE WHEN THEY PLACED THE PROBE! :-O)))But they still love him. LOL
TUESDAY: is spent at home following Tray around so he doesn't pull the tube out and making sure he is not eating or drinking off of the very strict schedule he had to follow. It is also Joshua's appointment with the KNOT clinic. This was a wonderful meeting with Sue Shaw, the nurse practioner that will follow Joshua now until he is an adult to monitor him for long term side effects from his treatment. She tells me the things I already knew and the shares a few things that I didn't. Like, I did not know that Joshua recieved the lifetime maximum amount of radiation to more than 1/2 of his brain. So if he does relapse in the same location, radiation is not an option for treatment. In addition he has a greater than 50% chance of developing cataracts due to the radiation. She also shared that he had the maximum lifetime allotment of the chemo Cytoxan. This drug is the worse one for causing infertility. But we won't know his fertility status until he is old enough to request a sperm sample on his own. She also told me about the types of blood tests that she orders to check for pituitary and thryroid damage due to the radiaiton. She also will check his blood for signs of leukemia every year since 2 of his chemos can cause leukemia 3 - 10 years after getting them. FUN STUFF!! LOL But all in all, it was an interesting and enlightening meeting. I am so thankful that we have acheived this goal tha now we just have to set our sights on his future and not worry about the what if's. Ok, now onto . . .
WEDNESDAY:
Wednesday we go back to the GI to have the tube removed, which Trayvon did by himself when he removed his tape. He was so proud of himself for that. I request a copy of the the test results before going down to the GI study, but the machine is to slow so the nurse practitioner just comes out and tells me that it is "extremely positive". So off to Upper GI. Again, Tray does not make the exam an easy one. So we wrap him up in sheets like a mummy and try using a large syringe to facilitate his drinking of the barium. After 20 minutes of absolute chaos, Trayvon decides that there is NOTHING scary about this test and agrees that the barium, now this is a quote from him "is very yummy, tastes like bubblegum" and watches his tummy on the video monitor. Though his stomach was on the opposite side (one aspect of his syndrome)it looked very normal. What wasn't normal was the vast quantity of reflux that was going up his esophagus the entire time he was in there. In addition, his entire small bowel was in complete disarray and nothing was where it should be, making it difficult for the doctor to follow the study at one point (Tray had surgery to correct a malrotation in his small intestine and when they pushed the intestine back in to his belly after the surgery, the different parts didn't rearrange themselves properly apparently). After the test we go back up to see the GI doctor and he shares with me the fact the the PH probe is soooooo positive he will be talking with the surgeons. So at this point I slow him WWWWWAAAAAYYYY down and tell him there will be no surgery until there is documentation that there is NO other treatment method. Then I asked how could he have NO reflux just 18 months ago and now all of a sudden have it so severe he may need surgery????? He looked at the old study and read the note from his old partner (who is no longer with the practice) that there was "no evidence of gastroesophagal dysfunction or reflux noted" yet the doctor sitting ther with me was baffled, because the previous study was in fact VERY POSITIVE for reflux!!!! That doctor told us to STOP Trayvon's reflux med that he came to us on because he assured us that he had no reflux. This doctor was unable to explain his ex-partners assessment and put him on much higher doses of meds and increased their frequency. We go back in 2 months for a follow-up and will schedule a complete endoscopy with multiple biopsies taken. He will then place another PH probe while Tray is asleep and then keep him in the hospital overnight so that the surgeons can observe the numbers on the computer themselves.
All this because I needed a letter that said he could stay in school when he yacks up his snack. SIGH. . .
Well, that's it for now. I will update wiht any new info tomorrow.
Take Care and God Bless,
Renee
Monday, April 7, 2003 4:49 PM CDT
Hi everyone,
Well, it has been an exciting weekend here!! First we had a severe ice storm that took all the power away from most of Central New York for more than 36 hours. We were without power for 2 full days. We luckily have a gas stove in the family room, a wood burning fireplace in the living room and gas hot water. So we were ok for the most part. We did go out for our meals and slept in our sweat suits with extra blankets, but all in all, it was ok for us. Others weren't so lucky. All of the hotels in the Syracuse area were full to the max with people who had no heat or hot water.
In addition there have been several updates on the kids. Nettie's lab results came back and showed that her HIV virus is still undetectable!!!! That means that the new medication she is on is still effective against the virus. Nettie has been still working on fighting some wheezing but she is holding her own.
Joshua has developed his first upper respitory infection in over 8 months. Since we have all had it, I have been waiting to see how he will react to the same virus we have all successfully fought without developing any bacterial infections as well. Well, he has already needed nightly saline nebulizer treatments due to the croup and he is wheezing and has really coarse lungs sounds. If he sounds like this tomorrow I will have to take him in for a chest x-ray and a listen to by the doctor. Luckily he has an appointment with the KNOT clinic tomorrow and the Nurse Practioner will be able to assess him.
Tray has had a VERY rough day today!!!! Poor thing had an appointment with the GI doctor to discuss what we can do to reduce the number of times he vomits. Well he decided that it was necessary to repeat the PH probe again (had it done 18 months ago) but this time we would leave the probe in place for 48 hours instead of 24, since I had already given him his Prevacid and Reglan meds. Let's just say that it did NOOOOOOTTTTTTT go smoothly at all. Tray holds the dubious honor of being the "worst" patient to recieve the PH probe in the clinic's history. In addition, he will have some blood work done tomorrow morning to check his liver function as well his kidney function to see if these are a possible source of his daily edema as well. He will also have an upper GI on Wednesday morning with a "small bowel follow through". They are looking to see if he has any partial blockages or severely delayed gastric emptying that would explain his multiple vomitting episodes. Hopefully with all of these tests we will get some answers!! I don't want to put him through anymore. Today was very traumatic for both him and I. When he finally fell asleep out of exhastion I broke down. It is very hard to hold your child down while they shove things down their noses. But he is now able to walk around the house without his arm splints on (he had these on to prevent him from bending his arms and pulling the tube out). So things are much calmer now.
Well, I'll update with more info as we go to different appointments.
Take care and God Bless.
Renee
Wednesday, April 2, 2003 9:09 AM CST
Hi everyone,
It’s still snowing today. Where did our nice spring weather go???? Please come back Spring! LOL
Yesterday I had a meeting with Trayvon’s CSE (Committee on Special Education) and CPSE (Committee on Preschool Special Education) to discuss the plans for his summer program as well as next year for kindergarten. It was an interesting meeting! First, he did qualify for summer programming. Second, his OT will be increased because, though he did well on the testing, he took A LONG TIME to complete every task. Therefore he needs help with his fine motor skills to help him to become more fluid in his movements. This will help A LOT with writing. He will also receive Speech and Physical therapy to address those needs. The elementary school also insisted that he has a one:on:one for any eating activities and outside on the playground. I agreed with the eating (because he stuffs his food and gags and vomits almost every meal again – even with very close supervision) but I thought the playground was a little overkill. However, the school has to feel comfortable and I agree, better to be safe than sorry. And finally, I signed an approval to be referred to a vision specialist to have his perceptiual skills assessed. All in all, I was very happy with the meeting.
Then I had a wonderful visit with Craig and Colene. They brought there little darling, Nathan with them and I got to hold and feed him! Nathan is in the process of being adopted by Craig and Colene who are the parents of Angel Brianna. Brianna was in treatment with Joshua and Joshua considered Brianna a good and special friend. Unfortunately her cancer was unbeatable and she went to Heaven 4 years ago. Now Craig and Colene are parents again to little Nathan. It was sooooooo good to see these loving parents with a baby in their arms again.
Nettie is feeling better and today she seems to have turned the corner with her asthma. She and Joshua will be seeing the pediatrician today for a well check-up. Joshua will be going to the KNOT (Kids Now Off Therapy) clinic next Tuesday. This is the clinic that I was so emotional about just a month ago. Now I am excited to go. She has scheduled a full 2 hours to meet with us to go over EVERY aspect of his treatment, diagnosis and health since completion of treatment. In addition, she will order some new tests to check for damage that the chemo and radiation can cause years down the road. From now on he will have these tests ordered once a year, along with his annual MRI for the rest of his life. He will also have his MRI this month, sometime in the next 2-3 weeks. His next MRI won’t be for another year! Then next month he will see the Brain Tumor clinic for the second time ever. Here they will go over his seizure history, give me the results of his MRI and discuss any ongoing learning, or processing issues he may be having. He will also go to this clinic once a year from here on out.
Tray saw the ENT yesterday and I was very surprised to learn that he has a severe ear infection (he had no signs or symptoms!). In addition his Right ear tube is blocked with old dried blood. There is only a 1 in 3 chance of clearing the tube but we are going to give it one heck of try, otherwise he has to go back to have a new one put back in again. That is NOT an event I treasure to repeat again. I also have to schedule another GI appointment because he is vomiting every meal again. This morning, he threw up his meds and had to do them all over again. He’s also coughing a lot at night. If the GI has no answers then it will be time to visit the cardiologist again.
Nettie has IVIG tomorrow and then I have a big meeting with her education team to discuss her progress as well as where we see her going for Middle School. I think I will be very pleased with this meeting as well.
Oh Yeah!!! I forgot to tell you, Joshua has been DISMISSED from Physical Therapy and Adaptive Physical Education!!!!!!!!! Now he only gets Speech and Occupational Therapy plus the assistance of his special education teacher and assistant. But this is a huge improvement and we are very proud of him.
Well, that is it for now!
Take Care and God Bless,
Renee
Sunday, March 30, 2003 7:44 PM CST
Hi everyone,
Annette is 13 years old now!!!!! HAPPY BIRTHDAY BABY! She had a friend over and we took everyone out to the movies and then a bit of shopping. Her friend spent the night, Nettie’s first sleepover. Ohhhh, I feel old. I have a 13 year old, OMG! LOL
I seem to have made headway in beating this blessed virus I have been battling for weeks. I can finally swallow with feeling like a hand grenade is going off in the back of my throat.
Unfortunately, Nettie seems to have begun to develop her own version of this virus. She is back on twice a day nebulizer treatments due to increase asthma. In addition, she has been complaining that her neck is hurting a lot. I gave her some motrin as well as a dose of Tylenol and she still was in pain. I don’t know what it is.
Joshua and Tray are doing well. Tray woke up the past two days with quite a bit more eye swelling than he has had but all in all, no other changes.
I am going back to work tomorrow for the first time in 2 weeks!! I miss it tremendously! But I was to afraid to go to work feeling as bad as I did. Many of the kids that we see in our department are what we call “neutropenic” which is a fancy word for a suppressed immune system due to the chemo they are receiving. When a child is neutropenic it is very difficult for them to fight off even the smallest of viruses and bacterial infections and have to be hospitalized for any fever they develop. I would NOT want to be the reason one of these children had to endure any extra time in the hospital than they absolutely have to.
I was able to do a lot of yard work last week and then I woke up this morning to a Winter Wonderland!! I can’t believe how much snow we have since I was just outside raking up the leaves without a coat on only 2 days earlier. LOL
Again, a reminder, to please say a prayer for the Troops, in all areas of the world, securing our peace, freedom and security. May the countries they are working in begin to experience, and appreciate the amazing feeling of a Democratic way of life. May they also appreciate the blood that was shed for their country to be free as much as we appreciate the blood that was shed to keep the USA free.
Take Care and God Bless,
Renee
Tuesday, March 25, 2003 6:50 PM CST
Hi everyone!!
Ohhhhh SPRING IS ON THE WAY!!!!! AMEN. Though I have been fighting a vicious viral infection that has inflicted one of the worse sore throats I have ever had, as well as ongoing aches, pains and a mean headache. I'm hoping it'll come to an end soon so I can begin to enjoy the nice weather.
Anyways, on to more important things. Nettie's initial labs came back and so far so good!! I have been very worried about her since we had to change her medications. Since we are using a drug she has already been on for a long time in the past, there is a chance that the virus will remember it, therefore rendering it useless. If that were to happen then we would have to change ALL of her meds and there just aren't enough left that she hasn't been on to have a long term fix. The real proof though isn't in yet. We are still waiting on the viral load test that actually measures the amount of HIV in her blood. She has been "undetectable" for over 3 years now, so any HIV would be very bad. But we shall see. The only lab that came back elevated was her triglycerid level. Last month it was 200, this month it was 262 (and that was a fasting level!). So we will have to watch her closely to be sure she doesn't need a cholesteral lowering medication.
Joshua had a couple of seizures the last week so we had to bump up his medication again. But since stopping the Tegretol he has had very nice weight loss!! YEAH! If he doesn't have any more seizures on this new dosage, then we will draw some blood work to check his medication level so we know for future reference what level works for him. We think he has lost about 5 pounds and many, many people have noticed it already.
Tray has being doing great health wise still.
Both of the boys started something called Jiu-jutsu (pronounced "jew-jit-sue"). It is a type of martial arts that combines gymnastic like moves (rolling, running, sliding, etc.) with wrestling like moves (grappling, tossing, pinning). I like it alot for the boys because it doesn't involve any kicks or hard punching. Therefore, both Joshua - even with his port-a-cath - and Tray -even with his previous open-heart surgeries- will be able to get a lot out of this without risk to their health. Tonight the instructor stated that Tray had a lot of natural athletic talent and that he may be excellent at this sport with some training. He also stated that Joshua is extremely strong. I was very happy with the class and the teacher as well as the boy's response to it. YEAH!!
So we are doing this instead with the boys instead of the swimming classes because they both fell on the same night. We will enroll them again in swimming in the spring.
Peter and I continue to enjoy fixing the house up a little each month. I love this house.
On that note I'll go to bed.
Take Care and God Bless,
Renee
PS PLEASE Pray for our Troops in Iraq. They deserve our support irregardless of differing opinions. I have been following the photos of the war and the devestation on the faces of those carrying our dead and wounded as well as those that have become POWs is heartbreaking. Please keep them and their families close to your heart tonight. May God shine down upon our troops and smile upon them.
With Love,
Renee
Tuesday, March 18, 2003 8:47 AM CST
Hi everyone!!
We are really enjoying this wonderful warm weather. I had the opportunity to go out and clean the backyard yesterday, it was sooooo nice to work and actually get hot while working outside! LOL
The kids are doing well. Joshua had his "last" IVIG last Thursday. We will now see how he does with infections and how many he gets over the course of the next 6 months or so. Nettie had a very difficult time with her IVIG. The home care nurse missed the vein the first time and then got the IV, but it infiltrated (the IV went through the vein) after she started the medicine. To make it worse, the nurse did not have any extra IV kits!! I called the clinic to see if we could bring the medicine there to have the infusion the next morning and they said yes. But. . . because the nurse had already accessed the bottle with the tubing from the home care company the hospital wasn't allowed to use it. Nettie's nurse practioner pulled a rabbit out of her hat, the hospital pharmacy had ONE bottle left that wasn't expired. So she was still able to get her IVIG on time, but it cost the insurance company over $4,000!! Each bottle is $2,000 and one of them was thrown away. UGHHHHH!!!! So we decided that Nettie will just have ALL of her infusions at the hospital for now on.
I also had Annette's IEP meeting. It was sooooo good to hear how well she is doing. She is now walking over 350 feet using her forearm crutches! She also has a word recognition level of fourth grade and is doing better on the third grade spelling tests than the third graders! LOL Her teacher is going to try giving her 4th grade spelling words next marking period just to see how she does. Math however continues to be a huge problem. She just doesn't "get" it. But hey, who can complain with the incredible gains she has made!!!!!!!!! YEAH Nettie!!
Also on the school note, I stoppped by to see Joshua's teacher while I was in the building. I commented that he was doing well on his homework and that I LOVE the new math program they are using. She showed me what he had just done that morning and I was shocked! The whole class has already been introduced to multiplication and division as well as geometry in addition to their regular addition and subtraction. I also want to note that Joshua is only in SECOND grade!! I couldn't belive that he was able to correctly multiply 8x4=32!! They use "arrays" or graphs with rows of objects to learn to multiply. I am amazed that he is able to grasp these concepts with his peers that never had major brain surgery, high dose chemo and high dose radiation. GOD IS GOOD. (Actually I am amazed that the kids are getting this at all, I didn't learn multiplication and division until 3rd and 4th grade and geometry was done in 10th grade! These kids already know quadralaterals, polygons, vertex, ipsilateral triangles, etc!)
Tray is doing very well. We discovered however that he doesn't like cheesecake. LOL On Sunday we suprised Peter's mom by going down to visit her for her birthday. Both, Peter's mom and dad have been on the Atkins diet so we couldn't bring just any birthday cake. It had to be a low carb cake. So Peter sent me a recipe via e-mail on how to make a no bake cheesecake that was low carb. It was REALLY easy to make, but once it was hard it looked to much like tofu to me for me to try it. However, everyone else LOVED it! Everyone that is except Tray. As soon as he put the first bite in his mouth, he threw it right back up, but then he had to empty his entire belly that was full of pepperoni, salami, and ham, alllllll over the house. Note to self - DON'T give Tray cheesecake anymore!!! LOLOLOLOL
Well, that's it for now. Nettie has her bloodwork tomorrow so I'll update when I know the results.
Take Care and God Bless,
Renee
Monday, March 10, 2003 5:22 PM CST
Hi everyone,
Well, I am back and seeing things differently now. I am sorry for the previous entry, I was caught off gaurd with my own emotions and sometimes you just need to write them down to see, validate and move on. That is what I have done.
I look forward now to our appointment with the KNOT clinic (Kids Now Off Therapy). I am actually ready to ask questions, look to the future and address several issues that have been thus neglected. We will also be seeing the Brain Tumor clinic on the same day and that will only be our second visit since the beginning of journey. I also look forward to this appointment. Joshua's next MRI is at the end of April and then we will move to annual scans. That is going to be harder to accept, but I am working on it! LOL
Nettie is now officially on her new medicine full dose and she is feeling better each day as the other medicine leaves her system. Next Wednesday she will have fasting blood work done to check her cholesteral (apparently it made a very sharp incline on the last lab work) and her glucose since the medicines are notorious for causing mild diabetes. But all in all she is doing MUCH better and we are pleased to see her looking better and feeling better.
Trayvon continues to do very, very well. Though he has daily edema still, no further problems have been noted. I had a wonderful meeting with his teachers. Apparently his IQ is in the normal range which is wonderful considering he has been on bypass 3 times, has had 2 strokes and has microcephaly (this is when the head circumfrence is far below average - usually it also means that the brain is abnormally small as well resulting in some level of developmental disability). However, despite all of these challenges, Tray clearly demonstrated on all of the testing that he has the potential to overcome all of these. He also scored very well on his OT tests, his pre-academic skills and his speech and language tests. He did show significant delays in processing though. This means that although he has all of the facilties to decipher all that is said to him, he has a big gap in how long it takes for his brain to process what was said, thus sometimes he loses large chunks of the information before it actually got processed. We see this at home ALOT and we were very suprised at the normal test results. But once the team expressed that the processing difficulties were overriding his actual intellectual abilities, it made much more sense. Therefore he will continue to recieve special education as well as speech and language therapy. In addition he demonstrated some huge gaps of knowledge on the OT and PT tests. He was able to do some of the older skills (ie. he could do some things at 6 and 7 years old, but couldn't do many of the 3 and 4 year old things). So he is going to recieve both of those services as well. The one thing that stood out clearly during the group meeting was that there is a STRONG possibility that Trayvon has a visual perception problem. Apparently he had a great deal of difficulty on all of the tests that required scanning pictures, aiming for things or doing eye/hand activities. So he will have a special test of his "functional eye use" sometime in the near future. Hopefully with this test we can pinpoint the reason he has difficulty with these tasks so we can tailor his therapy to address them. Look out kindergarten here comes Trayvon!!!! LOL
Well my friends, that is today's update on my angels.
Take Care and God Bless,
Renee
Wednesday, March 5, 2003 10:18 PM CST
Hi to everyone!
Well, it came and went quietly. Joshua's 5 year anniversary. There was no celebration, as he really has no idea what we would be celebrating. Since he still gets the monthly infusions he has never had a real break from the hospital. So he doesn't see the signifigance of the date.
But I do. I do so much it hurts. I have been more emotional about this day than I have in the past 4 years. I don't know why. Something in me has a great sense of fear, trepidation, elation, thankfulness and confusion. I do not know from where all these tears flow. Maybe it's a massive case of survivor's guilt. I do think that has a lot to do with it. Maybe if I didn't work at the hospital and see the constant influx of new patients or loss of far to many children, I would have time to learn to live life away from cancer. But I do work there and love it. I love seeing the parents grow and learn and embrace their child's life. They grow stronger, bolder and smarter every time I see them. I LOVE seeing the kids. Even the sad cases where nothing is working. Kids are kids and I love them all. I wish I didn't have to see them in such a sad and life altering situation, but none-the-less, I love my job. But I am surrounded by cancer, and I wonder why my son has beat unfathomable odds to be here today. What was in his favor that wasn't in Brianna's or Marrissa's or Alex's or Raheem's or Jennifer's or Timothy's or Mike's or, or, or. . . . I know that answer will never come to me, nor to the heart broken families of the children who have left this earth. I am sooooo very thankful that Joshua was to young to befriend his hospital cohorts. That way I don't have to explain to him how so many are no longer with us.
I do apologize if this sounds depressing. I realize it shouldn't be, but it is. Again, I don't know why. Maybe tomorrow or the next day or the next it will all seem to be the happy moment it is suppose to be. But today, I am sad. Maybe, just maybe, I never really let the tears flow 5 years ago as we embarked upon a battle for Joshua's life. I can honestly only remember crying (about his cancer and the treatment) only 3 or 4 times throughout the entire year. Maybe that wasn't enough and now that this chapter is closing, my mind is allowing me to cry the tears that needed to be cried so I can move on. Well, if that is the case I should be ready to move on here in just a minute or two. LOL
Well, it's time for me to go to bed. I will promise to change this journal update soon. It feels good to get my feelings into words.
Take Care, God Bless, and please, hug and kiss your kids tonight. They are precious.
God Bless,
Renee
Saturday, March 1, 2003 8:57 PM CST
Hi everyone,
Well, it's been a week already! We just got back from taking the kids to the YMCA for Family Night swimming. We got a family membersihip a few weeks ago and the kids love going to the rec swim times.
Nettie has had her medication changes. It was a very hard decision to make, but we decided to put back on her old medication she was on a year ago. We hope that since she was doing great on it when we took her off of it, she hadn't developed a resistance to it. However, there was a catch to the change. Due to the potential for developing a very serious rash you have to increase the dose slowly. She can only be 1/2 of the dose for 2 weeks and then she can go on the full dose. But the problem with that was that she wasn't adequetly protected with her other two drugs and only 1/2 of the dose of her new drug. We ran the very strong risk of losing the other two drugs due to resitance. So we added a fourth drug to cover her in the interm. The extra drug (which she will go off of when she goes on the full dose of her new drug, neviripine) is causing her a lot of distress. She is constantly achey, has bad headaches and a lot of joint pain. I feel so bad that she suffers from every side effect that exists with these drugs. The great news is that she has had NO REFLUX and only minimal diarreha since stopping the Sustiva. YEAH!!! I only hope that we have made the right choice of drug to change her to.
Joshua is doing great! His stamina is soooo much better. We will get his test results back by Wednesday so we will know whether or not he will be staying on the IVIG or if this month's IVIG will be his last before we try trialing him off of it. I'm a little nervous but I'm handling it better than I thought I would. LOL
Trayvon is doing well. He is still having the daily swelling, but he is doing great when it comes to exercise, no signs of tiring at all! LOL So I am not going to be to concerned until he shows problems in that category.
Well, that is all there is right now. We have an application into a NYC adoption agency that specializes in infants so hopefully we will be shareing some good news with you soon!
Take Care and God Bless,
Renee
Sunday, February 23, 2003 10:40 PM CST
Hi everyone!
OHHHHHH!!!! 9 days home with the kids, during the middle of some major snow storms, lets just say, challenging. LOL But we fit in TONS of stuff, so much that neither Joshua nor Annette finished their homework! (yes, their teachers send home simple assignments to be done over the break) Today we picked up a brother/sister combo. Both siblings are friends of Joshua and Nettie. It was “Scout” day and “bring-a-friend” day at church. So we brought the gang to church and then we all went to the Museum of Science and Technology. Our friends had never been to the Museum before so it was fun to see the kids show them all around and do all the old stuff with a renewed sense of interest. Then we went to the Spaghetti Warehouse for lunch. Again, it was a very good time! Though it took some time to find a table for 7 (including one wheelchair LOL). After lunch we took our guests home and then went straight on to the YMCA for “family rec” swim. We had a really good time, though Tray was VERY apprehensive about the very large pool. Joshua impressed Peter and I greatly with his much improved swimming skills. He is now able to go to the bottom of the pool to retrieve an object. In addition he was able to swim about 5 – 10 feet using an overhand stroke. I was in shock with his swimming, because he wasn’t that great at the end of summer. What was also much more obvious was his increased stamina. We were on the go from 9:00 am – 5:30 pm and he did great until he got in the car on the way home. He ran all day at the Museum, swam and walked everywhere without complaining he was tired. It was such a pleasant switch of pace, we almost didn’t even notice the nice change.
Tray continues with his daily facial puffiness. Today it was much more prominent than it has been the past couple of weeks. I gave extra lasix and it took most of the day for it to begin to resolve. I really do worry that the doctors are missing something. I tried reporting these changes to the cardiologist in NYC, but he has failed to get back to me on 4 different occasions. I don’t feel it is in Tray’s best interest to keep trying to work with someone who doesn’t even take the time to call back when there is a major problem. So I will work with the doctors here for a bit longer, but then I will just make arrangements to get a second opinion at another hospital. I do think that something is being missed. I don’t know what, but something is.
Nettie was taken off one of her HIV medications out of desperation to get her gastric pain and diarehha under control. Since stopping this one med, she has been PAIN FREE!!!! So tomorrow morning I have to report to the ID team and they will now have to embark upon the search for a drug to replace this one with. The problem here is that she has been on almost all of the medications, new and old and therefore, they have a VERY limited selection. It is also important to pick a medication that won’t cause a repeat of the same symptoms we just relieved. However, she can’t stay on just 2 drugs. The virus is just too smart and she has had such aggressive viral increases, she needs to be on a minimum of 3 medications to be sure the virus stays dormant. She has had an undetectable viral load for almost 4 years now, I don’t want to lose that ground we worked so hard to gain. But I will let the ID team consult first before I worry about things that I may not even have to yet. J
Other than that, all is well here. I am happy that school starts again tomorrow so I can get some cleaning caught up and several errands done that really need doing. But we seem to be in the middle of a major snow squall and it is possible that there may be a snow day tomorrow. Let’s hope not!!!
Take Care and God Bless,
Renee
Tuesday, February 18, 2003 4:42 PM CST
Hi everyone,
Well, today has been a busy day. Since the kids have the entire week off, I had to plan a couple of fun days out. Today we went to a local theater to see Spy Kids 2 and then out to lunch. Yesterday Joshua spent the day at his friend's house and I took Tray and Annette out to Taco Bell for some lunch and a quick trip to the Dollar General to pick out some little "prizes". After going out to lunch today, Peter met me and the kids up at the GI doctors where Nettie and Tray had appointments. I scheduled Nettie because she has been having some really bad reflux that yesterday caused her to yell out in agony in the middle of Taco Bell. In addition, she has had an increase in her diarreha. I made the appointment for Trayvon because he continues to vomit with the slightest cough or gag. When he does throw up, everything, and I mean EVERYHING is still in his belly hours later. If he ate tuna at 7:00 AM (not uncommon) it would still be there at 10:00 PM. Now that just isn't right. It would explain the lack of weight gain as well.
Soooo, the doctor put Annette on Nexium to see if we can get her reflux under control and an Irritable Bowel Syndrome drug that should help with the very loose stools. Unfortunately it will bond to all of her anti-HIV drugs, so I will have to get up every night at midnight to give it so it is spaced in between when she gets her other drugs. YUCK!! Hopefully these 2 drugs will help bring her some relief. Trayvon was started on some Pepcid AC to help decrease the irritation from the aspirin he takes every day for his heart. (he has blood in his stool on a regular basis and since he isn't on coumadin anymore, the doctor is concerned his stomach is very irritated). He was also started on a drug called Reglan. This will help move the food in his digestive tract along faster so he can digest his food better rather than it sitting in his tummy for such a long time. This may also help with the vomitting since his stomach will be emptier throughout the day.
Joshua and Nettie have appointments at the Immunology Clinic tommorrow. Nettie will have her regular 3 month study visit (bloodwork and check-up) and Joshua will get his IVIG and some labwork too. The doctor's have now decided that if there are any abnormalities on Joshua's immune studies they will leave him on the IVIG indefinately, instead of trialing him off. I don't know whether to hope for an abnormality (since the IVIG has certainly helped him to be the healthiest he has been in his entire life) or, hope that he is completly normal and try going without the IVIG. I guess the answer will be clearer with the lab results. :-)
Well, that is it for now.
Take Care and God Bless,
Renee
Monday, February 10, 2003 12:38 AM CST
Hi everyone,
I know I just did an update, but felt I needed to share my anxiety, happiness and concerns. Yesterday for some unexpected reason it became an extremely emotional day for me. I was at work, doing my weekly coffee hour in the clinic and had to make some appointment changes for Joshua. After changing Joshua’s IVIG appointment from today to next Wednesday, I asked if there was an appointment for the KNOT clinic made yet for Joshua. At our hospital, once you are 5 years from diagnosis AND 2 years out from any treatment, you move from regular clinic to the KNOT clinic which stands for “Kids Now Off Therapy”. He will also begin to be followed by the brain tumor clinic rather than just seeing Dr. Souid. I was fine thinking about making the switch, actually it is a huge milestone and I was excited we are approaching this step in Joshua’s care, but I was just overcome by emotion over the whole experience as well.
March 4th 1998, when Joshua was 30 months old, we faced our first day of shear terror and absolute chaos. Joshua, after 6 weeks of progressively getting more clumsy and lethargic was brought to the ER by me. Peter waited for the nurse to put Nettie on the bus and then met us at the ER. My mom was up for a visit and came with me to keep us company. Within a half hour arriving at the ER Joshua was no longer able to lift his right foot off the ground. Still, no one seemed concerned except me. When we finally saw the Dr., Dr. Brown, who knew us well from our visits to the ER with Nettie, we knew something was wrong. She immediately ordered an MRI but the machine was busy with a critical little girl, so we went to CT instead. While there, the nurse looked at me and said “he isn’t on ANY medications?” The comment meant nothing to me at the time. Peter went to work as we were going to the CT scan, because he really believed nothing major was going on. I had to call him back only 20 minutes after he left because Dr. Brown came in and showed me the film of my baby’s head with a GIANT white blob stuck in the middle of his brain. From that point on it was a pure journey into chaos. He was rushed to the ICU (mind you he was still up and talking and playing, albeit slightly drunken like) where they scheduled him for emergency decompression of his brain only 2 hours later. Then after 2 very long days of sedation, confusion, extreme irritability and blood pressure problems, he was taken to surgery to have the tumor removed. He was in the OR for 15 hours where they replaced his blood volume 3 times. They removed 90% of his tumor. He spent the next 3 weeks intubated in the ICU and struggled with many different complications. 2 days after being removed from the respirator he developed surgical meningitis and took another week to recover from that in the step down unit.
All of that started on March 4th 1998.
It is now almost March 4th 2003. Five years later. Technically he’s cured, technically he has the same risk of developing cancer as the rest of the general population, technically he never should have had a brain tumor in the first place. So I place NO faith in technicalities.
Moving to the KNOT clinic is like admitting that we completely trust the fact that he is cured. This is a wonderful moment but it is riddled with anxiety, sort of like when you come off of treatment. You feel like you are more diligent when going to the regular clinic. The KNOT clinic is also where they start to look at the long term side effects of all of his treatment. I know the obvious ones like his hearing loss, his immune issues, his Obsessive Compulsive issues, etc. But now they look at things like thyroid, pituitary, learning, and blood cancers. I don’t know if I am ready to start looking at the big picture yet. Also, this is our last 6 month scan (actually this was a favor from Dr. Souid, as he should have moved to annual scans last MRI.). That scares me silly. How will we know if it comes back before it gets so big it starts to cause symptoms???!!! I know that it is normal to feel this way and every other parent of a child with cancer struggles with these same issues as they become long term survivors. I count my blessings everyday that he is a long term survivor. We are very close to many families who will never have the pleasure of wrestling with these same issues. Their children’s battles were cut short. But I also acknowledge that my feelings are real and I am frightened, happy, anxious and excited over this next phase in Joshua’s life.
Thanks for listening to my venting. I will be ok after a nice nap and a Pepsi. LOL
Take Care and God Bless,
Renee
Wednesday, January 22, 2003 at 07:59 PM (CST)
Hi everyone!
Well, Trayvon was just the beginning of the puke-a-thon. Two days after Trayvon’s night of yucky’s, Joshua started (again in the middle of the night of course) but he also had the diarrhea and fever. Not more than 6 hours later, Nettie woke up crying with a stomach ache. Although she never threw up, she had bad diarrhea for 2 days. Neither Joshua nor Nettie had ANYTHING to eat for almost 3 full days!!!!!!!! That is definitely an all time record for those two!! I didn’t know what to do with myself and all of the food still in the house when it was time to go grocery shopping. LOL
Trayvon had his echocardiogram on Friday. The doctor was THRILLED with what he saw. He was unable to explain his reliance upon the increased meds and why, despite this increase, he is still waking up with facial edema daily. It is possible, though apparently there is no test for it, you can have something called “restrictive” disease. In which the heart doesn’t completely relax, thus doesn’t allow all of the blood to flow out of the heart resulting in fluid build-up. He said that the only treatment available is lasix. Since he is already on that, there really isn’t any more to do. I don’t know how comfortable I am with that explanation. I feel that if the heart is reliant upon a medication and if it isn’t doing the job is should be. . . I don’t know, call me crazy, another solution! I’m going to call his doctor in NYC to see what he thinks. I hate to play that game again, but maybe he will have some input on it as well.
There is no school again today due to severe cold weather, it was only –8 out this morning. I am actually boiling water right now to melt ice off the roof, because it is splitting the roofing tiles and water is leaking in around the back door. There is over 4 inches of ice on our roof right now!!!!! Scary!!! The kids are playing somewhere in the house. Guess, I should go check on them. LOL
Take Care and God Bless,
Renee
Sunday, January 19, 2003 at 03:26 PM (CST)
Hi everyone,
I am soooooooooo relieved to report that Trayvon has not had any further signs of problems. I am still very unnerved by what happened last week, but feeling better each day we pass and nothing else happens.
I thought I would share some recent "insights", "goals", and "observations" that the kids have recently enlightened me with.
In the car the other day after getting Joshua's haircut, we were approached by a couple of nice Church of Latter Day Saints girls. When Joshua asked me what they wanted I just told him that they wanted us to know that Jeasus and God loves us very much and if we had any questions we could call their Church. Tray readily piped up that Jesus loves everyone. I agreed happily and asked Joshua what he was thinking about. He announced that our bodies don't go to Heaven just our spirits. I told him that he was right and how did he feel about that. He thought hard for a moment and then he announced with a great deal of conviction that he knew who the boss of Hell was. I asked who he thought it was and he answered "Jafar" (from Disney's Aladdin movie)! Apparently that is what he has pictured in his mind. LOL I did let him know that the devil is the boss, but that we don't know what he looks like because only people who have died know that answer. Welllllll, that opened another whole can of worms because then he needed to know who went to Hell. That was a tricky conversation, but I think I did pretty good at covering all of the necessary bases without going too far into the rights and wrongs of life.
After liistening to all of this Tray made an announcement that caught me by suprise. He stated very seriously, that "He is going to be the boss of Heaven." I suggested that maybe he could be a wonderful angel who helps the boss who is God, and that God likes being the boss, but he said "NO!" He wants to be the boss and that's all there is to it. LOL Well, he aims high doesn't he! LOL
Take Care and God Bless,
Renee
Wednesday, January 15, 2003 at 01:21 PM (CST)
Hi everyone!
It is FREEZING here in NY!!!!!! Today has been a mixed day. First thing this morning Trayvon woke up very irritable. I thought at first it was because he was just overtired. But as the hour went on, he started crying harder and harder and then he started telling me his head was hurting him. I thought maybe he had accidently scratched himself, but after checking him out, I realized he meant the "inside" of his head. I tried the cold washcloth routine and the quiet, no light routine, and the the massage the temple routine, all to no avail. He cried HARD for the next hour and then vomitted. He said he head then felt better, vomitted one more time about 45 mins later and that was it for the day. I had called the doc first thing in the morning and decided it was better safe than sorry to take him in anyways considering had no other "sick symptomps".
Now, I realize that most mothers would never think like I have been thinking, that is unless they have had a child with a brain tumor before. I tried SOOOOOOOOOO hard not to read more into these symptoms than was really there. But once we arrived at the doctor's I knew all of the things they were thinking and trying to "rule out" just by what they were asking and looking at. By then my stomach was turning and then they asked who the neurosurgeon was that just saw him. After calling the neurosurgeon as well as the cardiologist we were told to go home and watch for ANY further symptoms. If wakes up tommorrow with another headache and he isn't any sicker tonight, then we are to go straight to the ER. I take some comfort in the fact that he is healthy as a horse right now, and yet that is also extremely disconcerting. I also know the odds of having a second, totally unrealted, child develop a brain tumor are so astronmomically high that they almost inconcivable. Yet in our house, if it is possiblity, even the tiniest of possibilities, it can, and sometimes does, happen.
So for now we just wait it out and see what happens, and God willing, nothing will.
In other news, our new washing machine arrived today. I haven't even had a chance to use it, but just knowing it is sitting in my basement makes me feel all warm and fuzzy inside. I can't wait to order the matching dryer in a few weeks and our new dishwasher should be here soon. YEAH!!!!!
I also was able to go down to the Social Security office today and get Trayvon his new social security number!!!
Well, that's it for today.
I'll update if anything changes.
Take Care and God Bless,
Renee
Wednesday, January 08, 2003 at 01:28 PM (CST)
Hello everyone,
Since setting up the computer and getting internet service back, I have been able to check up on so many children I have been following via their caringbridge sites. I was so heartbroken to see how many have either passed away or have taken serious turns for the worse. I frequently have people ask me "why I read other kids sites, doesn't it depress me?" Well, yes, as a matter of fact at times it does. But it is the stories of these children's lives that are so powerful and moving. It gives me much strength to read of their trials and tribulations, and sadly sometimes of their deaths. It could so easily be one of my children that could be in their place. As I read of the care they recieve, how the families cope and the successes that do occur (far more frequently than those who do not win their battle), I approach life with a bit more gratitude.
My children fight for their lives, more so at times than others, but none the less, they have fought and will continue to fight. And so have and are hundreds of other children in the world, as they try to beat the odds and live life to the fullest. To read of them is an honor.
That is why I read other children's sites. It is an honor to know them and cheer them on, if only in my own head.
As for the kids here, well, Tray again has begun to demonstrate somemore CHF. He is swelling again and he is more tired than usual. I faxed the doctor today a list of my concerns and he called to say he is setting up a full evaluation again. He wants to look at the pulmonary vein as well as his valve. Peter and I have talked and if they think he will need several other open heart surgeries, we would like to discuss the option of doing a transplant instead. It just doesn't make sense to try and fight to save his heart, when it obviously can't make the long haul and each surgery is soooooo difficult on his little body. It is a discussion we thought would be much further down the line.
Joshua is doing well, but has the pre-IVIG exhaustion setting in. He is doing great in school though! I called the urologist yesterday to try and get him in to evaluate why he needs to urinate umpteen times a day. Haven't heard back yet.
Nettie is doing wonderful. She will be doing her IVIG at home tomorrow for the first time in a long time. She also has this interesting rash covering her body, but has no other symptoms, so I have been basically ignoring it. :-) She wastes no time letting me know it's there every morning when she dresses and each night when she undresses. Otherwise she doesn't even remember it's there.
Loving the new house, gotta go unpack a bit more.
Take care and God Bless,
Renee
Thursday, January 02, 2003 at 10:22 PM (CST)
Good evening everyone (actually it is almost good morning!). I am pleased beyond words to tell you that I am typing from our computer in our new house. Road Runner was finally turned on today so I can update now. I actually had updated the day we moved, but the server froze our computer so I had to just pack the computer without the update up and running.
Anyways, we are in our new home and mostly unpacked. It was an arduous process, but well worth the effort now that we are here and living finally in our "own" home.
We had a wonderful Christmas despite the confusion and the kids have been home on their Christmas break. I have to admit, it is definately time for them to return to school though, all I hear all day long is how "bored" they are! LOL
When I left off, Trayvon was having some difficulty with facial puffiness and he had a cardiology appointment. Well, the cardiologist was concerned that he continues to demonstrate congestive heart failure and had his lasix increased again to 3cc twice a day. Just to remind you, only 3 months ago we were only on 1.5cc's of lasix only once a day. So I was not happy. In addition, he wants to increase his Captopil dose as well, this also does not sit well with me. Tray had been on only 9 mg 2 times daily after his last surgery in April and now he is on 12.5 mg three times daily with an increase in the near future.
Well, anyways, over Christmas I began him on the 3cc of lasix with virtually NO effect. I called the day after Christmas to inform them of this development and he was increased to 4cc's twice daily!! This actually did do the trick, but I am starting to see other disturbing things indicating increased cardiac issues. For example, he is vomitting a great deal again. The doctors don't believe me when I tell them that this is a bad sign for him, but EVERY time he goes into CHF he has spontaneous vomitting as a symptom. In addition, he is now taking naps again. He doesn't slow down AT ALL, but then out of no where, he just falls asleep, he hasn't done this since he needed his last surgery. Soooo, I am am of the inclination that Tray is in for his fourth open heart surgery this year to replace his valve. We are less than one year from his last major open heart surgery and were told only 3 months ago that he wouldn't need his valve replaced until he was like 10 years old or so. Apparently they forgot to tell Trayvon's heart that! I also leads me to believe that Tray's heart isn't going to make the long run. Just a few short months ago 3 different doctors assured me that Trayvon has improved SOOO much that the likelihood of needing a transplant in the future was now virtually 0%. THREE DOCTORS!! But I really think they are all wrong. Call it mother's instinct, call it karma, or as my husband calls it the "curse of Renee's intuition". I think that we are in for a long ride with Trayvon's stubborn, tired little heart and it isn't going to behave as nice and soundly as the doctor's want it to so badly. Granted Trayvon has NO IDEA that he is suppose to be sick, even his cardiologist noted that despite the severity of his heart problems, he is one happy little bugger! LOL Ohhh, one other thing, he has failed to continue gaining any weight. In fact he has lost 1 pound since he had to have an increase in his lasix, so his actual weight increase was probably water weight and with this newest increase he has become even thinner and I don't even want to check it until we see the doctor. Nothing that can be done about it right now anyways. :-( In addtion to all of this, Trayvon had his ENT evaluation for his bloody ear. I know I mentioned in the past that Tray had "stuck a toy in my ear mommy" and it bled for several days. Well it has continued to do that for the past month so when Joshua had a follow-up appointment, I asked if I could bring Tray instead because Joshua was healthy as a horse at this time. The ENT was very unhappy with Trayvon's ears. He stated that it was NOT a toy that caused his ear to bleed, but a big, bad pocket of pus and infection in his ear canal. He was shocked he had no pain or fever! Both of his ear tubes have fallen out, and the other ear was filled with fluid. Sooooo, the long and short of it is, more tubes for the ears and a debridment of the infection area. He was on high dose antibiotics and ear drops for 2 weeks. His surgery is scheduled for Feburary 9th. Not a good ending to 2002 for Tray, here's hoping for a better beginning to 2003.
The one good thing that did happen though was that he was able to stop his coumadin!!!! YEAH, no more finger sticks to check his bleeding times! Though he really didn't mind these and I was doing them right in the clinic (had to use their machine because Medicaid wouldn't let us have one for home)it was still a pain in the neck to go all the way to the hospital and wait for the nurses to be done with the machine and all. At least was one shining moment in the last 2 weeks for my poor baby! LOL
Joshua is doing Fantastic!! The doctor did confirm that they want to stop his IVIG after his March dose to see how he does. I honestly hold out little hope that he will be successful in staying infection free. But hey, what do I know, I'm just a the silly parent.
Nettie is doing GREAT!! She is such a beautiful young woman now, she makes me smile every time I see her. Which actually isn't that often because she is now spending hours in her room listening to her radio and writing in her journals, like any normal teenager!!!!!
Well, that's it for now.
I hope all had a wonderful Christmas and a Happy New Year. Please pray for the families moving through the Holiday seasons greiving the loss of their precious angels. My heart aches for them.
Take Care and God Bless.
Renee
Tuesday, December 17, 2002 at 09:16 PM (CST)
Happy Holidays to all,
It's been a completly chaotic here and I am almost at my breaking point of stress!! But.......we having a closing date for the new house and the movers are coming on Saturday morning at 9:00am sharp! I know, I know, it's only 4 days til Christmas, I know. But at least we will be moved and all done with it for GOOOOOOOD!! I can't wait.
Tonight we had the wonderful pleasure of seeing Annette in her Winter Concert at school. She was a vision of sheer pride, beauty and amazment. I sat there looking at her singing with her friends up on stage, in her beautiful clothes, looking as grown up as I will let her be. To think that was only a few short years ago that she was fighting for her life, over and over and over. Everytime she caught what appeared to be a break, another huge whammy would happen and she would be sitting at death's door again. We never dared to dream back then that one day we would be sitting in the auditorium tonight watching our beautiful daughter join the the ranks of other fifth graders singing Christmas songs at their annual Holiday Concert. She has shocked all those who knew her in the past, and continues to impress those that know her now. Medically, Nettie has been very stable for the past 2-3 years with nothing more than a minor sinus infection and some problematic drug side effects. But most of you never knew her when she was barely able to breath on her own, had a total of 7 central lines over only a 1 1/2 year period, wouldn't eat a bite by mouth and was taking over 32 different medications, many of them IV. She lived more in the hospital than she did home, but we never left her alone, EVER! She was told that she could do what she wanted including joing Jesus, if that was her choice, but it had to be her choice. I guess she didn't feel like going just yet and in May of 1996, she had a COMPLETE turn around and was healthy as a horse for almost 2 years, though she never became as ill as she did during that point in her life.
Nettie we love you and are proud as peaches that you have come as far as you have and will stand by your side as you continue to shine on this world with your beauty and strength.
On a different note. Trayvon had an appointment with the ENT to see why his little ear keeps bleeding (it started a couple of weeks or was it a month. . .ago, anyways, I thought it was because he had stuck a toy in his ear and since he was on coumadin it just bled more). Apparently the tubes he had put in had come out into the ear canal. The one ear has already filled with fluid, though he has no signs of any discomfort. The other ear (the bleeder) has a big pocket of infection and the doctor was concerned because he can't see what the cause of the problem is. So now he is on a high dose antibiotic and we are scheduling him for a second set of tubes.
In addition, Trayvon has been waking up each morning for the past 2 weeks with facial edema again. I was a little concerned but with an extra dose of lasix he seemed to do well. But lately, this past week, he has been doing it more and more and it isn't going down. So we are scheduled to see the cardiologist tomorrow and will have a full work up. The last time we were there, 3 months ago, we had to add all of Tray's medications back because he was doing this same thing. The evaluation revealed that his single valve was leaking again, but with the increased meds the follow-up evaluation showed that he was doing GREAT. So I am a little concerned that he isn't doing GREAT anymore and will need some tweaking again. I guess tomorrow will tell.
And last but not least, Joshua. He has definately been "punky" lately and it seems to happen every month the day or two before IVIG. He gets huge dark circles under his eyes and he sleeps a lot more. I just know that the months following the discontinuation of IVIG will be a very unpleasant experience. But again, well, just have to wait and see.
Sooooo, wish us luck on this stupid move!!! And say a prayer that Tray doesn't need more open heart surgery!!!
Take Care and God Bless,
Renee
Sunday, December 08, 2002 at 07:04 PM (CST)
Hello everyone!
I just wanted to give you a quick update since I haven't updated in a bit.
All is going well for the most part. LOL We still don't know when we are moving into our new house and I am soooo frustrated because I can't decorate for Christmas or get a tree or anything because we aren't sure where we are spending Christmas yet! UGHHHHH. Apparently all is going well, it's just waiting on the lawyers from both sides to finish all of the paper work and then consulting with the banks to get their stuff in line, etc. etc, that is the hold up.
The kids are doing well. Joshua is going in for his dental surgery on Wednesday and may spend the night depending on how much work they do and how well he comes out of the anesthesia. I think and hope he will do fine and will come home later in the evening as oppose to spending the entire night.
Tray is doing very, very well and I meet with the neurosurgeon to go over his MRI tomorrow. There really isn't any major concerns so it will be more of an interesting, insightful appointment vs. a stressful interpretation. Tray now weighs 41 pounds!! He was down to 28 pounds at the time of his surgery in April. He has gained 13 lbs in 8 months, incredible!!!! He still has a very fluctuating appetite and can go weeks living on his one can of Pediasure and a small meal a day, to other days eating us out of house and home LOL. He still has intermittent facial edema but it is never directly connected to anything specific so I just think he will need his valve corrected far sooner than they are thinking. But hey, well deal with that when the time comes. For now he is doing great.
Nettie is still having trouble with her "imaginary friends". Apparently however, I was mistaken. I had thought she only had one that was bothering her, however, she corrected me the other day and informed me that she had MANY "imaginary friends" that follow her around. The other day one was tickeling her in the car and she was laughing out loud!! I really think that a medication change is on the horizon. :-((( I have no idea where or what they will go with meds now, since she is exhausting all lines of drugs and has been on almost all of the old ones and is on the new ones now. I guess we'll just have to wait and see. She was ordered a new wheelchair the other day and it should be here in about 3 months. She picked the color "razzleberry" for her new color. I think it will look great!
Peter and I have begun to open the search for another adoption. We haven't broken it to much of the family yet, I think they are still adjusting to Trayvon, but we're ready. Peter and I talked about having 6 kids from the day we met, and we always knew that some of them would be adopted. But unfortunately, my ability to bring forth many babies into the world is less than ideal. So it looks like we'll just have to adopted the rest! LOL
I think that's about it!
Take care and God Bless,
Renee
Monday, December 02, 2002 at 08:42 AM (CST)
Hi everyone!
It's been a little while since I last "talked" with you all. In that time I was thrilled to witness the birth of my second God child and neice, Samantha, we had a Wonderful Thanksgiving with family and friends, I attended the funeral service for the baby mentioned in the past journal entry, and the kids appeared to have grown about 4 inches each!!!
The funeral was beautiful and touching. My guilt has lessened but my anger at this disease has doubled!
Our Thanksgiving was calm and relaxing and spent with Peter's mom and dad, my mom and dad and my brother, from Long Island, joined us. The only down thing that happened was that I fell down our back steps with my left over turkey on the plate. I tripped on a boot the kids had left there from their time out in our first real snow fall, and I lost all but a bit of my turkey. Not to mention the fact that my back is still sore as hell! LOL But I was more mad at the turkey losage than my back. :-(
Samantha is my second God Child (not official yet) and this was the first "birth" I had ever seen. Joshua was a c-section and all my other neices and nephews have been born far from our home. So it was especially special for me to see this wonderful event. I will forever be grateful to my sister-in-law for allowing me this chance. Samantha was HUGE at 9 lbs 10 ozs (and yes, she was a vaginal delivery with NO medications!). She is as beautiful as an angel.
Trayvon is having an MRI today under general anesthesia. He is a bit bitter about not being able to eat and keeps telling me that he smells popcorn in the house! LOL He has also informed the family that he is to be called "Trayvon" from now on, NOT Tray. I don't from where or whence that came about, but he is not playing games either! LOL Now, normally I would be thrilled with this because I prefer to call kids by their full names, ie.Joshua vs Josh. However, with Trayvon and Annette, since we didn't have any say in their given names, we always thought that adding a "twist" was acceptable. Though Annette now prefers Nettie, Tray has clearly stated that it is TRAYVON. He'll say "Tray is not here" or "I'm not Tray, I am Trayvon." LOL
Well, that is about it! Talk more later, gotta run.
Take Care and God Bless,
Renee
Friday, November 22, 2002 at 06:18 PM (CST)
Hello to everyone!
It's been a busy couple of days here, but the weekend is upon us at last.
First on the agenda:
We got our committment letter!!!! NO, no, not that kind of committment letter, though I am sure many people think I should be committed! LOL We finally recieved our letter from the bank to solidify the purchase of our house. YEAH!! So now we will be moving sometime in December.
Second on the agenda:
Joshua's IVIG went without any problems. He was perfect for his port access and behaved like an angel the whole day. The following day, Thursday, he had his MRI. It was done under general anesthesia again, because he has yet to develop the ability to lie still for more than one or two minutes at a time. We recieved the results today and all looks clear!!! The official results are still pending, but the oncologist looked at them and felt that they were picture perfect.
Third on the agenda:
Nettie's little "friend" has begun to make fewer appearances since the changing of the medication times. However, the sleepless nights continue and she is showing the signs of exhaustion, crankiness, irritablity, moping around the house, etc.. But the clinic wants to stick to this time a bit longer to see if the insomnia will work itself out in time. We'll see.
In closing, I have been sitting here, writing all this while tears flow freely. I have been greatly saddened by the news today that a little girl who is being treated at the hospital Joshua was, and on the same treatment protocol (Head Start II) has failed the protocol severely. She has tumor all over her precious little body. I had soooooo strongly believed that this chemo, that has spared my son's life, would do the same for this baby (she is only 2). I have been cheering her family on for months, telling them how good she looks and that it HAS to be working, only to be proven competly wrong. Surviors guilt is a powerful, devestating emotion that I have delt with several times since Joshua's treatment. However, today it was at an all time high. I just don't understand cancer, treatments and life in general on days like this. Which is very difficult to accept at times, because, as the Parent Advocate, I pride myself on my comprehension of these very things. I know that I had nothing to do with her situation, nor did I influence the outcome of Joshua's treatment. Things happen. But it makes me very, very sad.
Please say a prayer for this family as they seek out treatment options and answers.
Take Care and God Bless,
Renee
Tuesday, November 19, 2002 at 12:30 PM (CST)
Hello everyone!
Once again, busy, busy, busy! LOL This past weekend the kids went to a bowling party with Camp Good Days and Happy Times. It was at the bowling alley right down the street from our house. Joshua loved it!! Tray kept his counselor on the run the entire time and Nettie was bored stiff. LOL I think Nettie is getting a bit old for some of these events now and she has never been a big fan of bowling anyways. But Peter and I were able to get some significant Christmas shopping done while they were there. :-)
Today the boys went to the dentist. At first there was a lot of concern that Tray had TOO MUCH antibiotic for his pre-med. (Tray has to be pre-medicated with an antibiotic prior to any type of mouth work being done, as a precaution against developing a serious heart infection from the loosened bacteria in the mouth) But after a quick call into the pharmacy who confirmed the dose and amount give, all was fine. Tray has PERFECT teeth so far!! There are some mild dark spots on his back teeth, but those are from all of the antibiotics he has had and the matainence antibiotic he takes because he has no spleen. So she was thrilled with his teeth.
Then there was concern because I forgot to mention that Joshua had a Port-a-cath until after his cleaning was done, and they thought he should have been pre-medicated too! But again, after a quick call to the clinic, it was confirmed that he did not need the antibiotics. The dentist was not happy with his teeth at all. The radiation and chemo did terrible things to his new 6 yr molars. They came in absolutley filled with holes and decay. She, meaning the dentist, warned us that this may happen and we will deal with it as it comes up. But it is still not something any mother wants to hear, that her child's teeth are in TERRIBLE shape and will have to deal with a life of ongoing dental issues. So he will have to have surgery to put on 2 crowns on the top two molars, and the bottom ones will have to be filled completely. We are keeping our fingers crossed that the rest of the molars will NOT look like these, but the odds are strongly against him.
On another note, our poor neice Kali has developed a severe case of the chicken pox!! Despite having had the vaccine. So I had to call the doctors to let them know that Joshua and Annette had been heavily exposed and to see if they needed the special shot to help their immune system fight the virus. Nettie luckily just had her IVIG last week, so she as plenty of protection from that. Joshua needs the shot, but tomorrow he is getting his infusion so the doctor thinks that the IVIG will be just as beneficial as the VZIG(varicella zoster -another name for chicken pox- immuno-globulin)shot. She is going to call later today to let me know if I have to bring him in tonight for the shots (he needs two because the dose is so big- and they HURT like the dickens!!!) So hopefully he will not need them.
Tray should be all set because he had the vaccine and his immune system is set against viruses.
Just another typical day in the Curkendall household! LOL I will update tomorrow to let you know how it all works out.
I will ask for a little prayer for Joshua, as his MRI is on Thursday and this is his last one before he hits the big 5 year mark since diagnosis!! I am sure everything is fine, but a few extra prayers can't hurt.
Till then,
Take Care and God Bless.
Renee
Tuesday, November 19, 2002 at 12:30 PM (CST)
Hello everyone!
Once again, busy, busy, busy! LOL This past weekend the kids went to a bowling party with Camp Good Days and Happy Times. It was at the bowling alley right down the street from our house. Joshua loved it!! Tray kept his counselor on the run the entire time and Nettie was bored stiff. LOL I think Nettie is getting a bit old for some of these events now and she has never been a big fan of bowling anyways. But Peter and I were able to get some significant Christmas shopping done while they were there. :-)
Today the boys went to the dentist. At first there was a lot of concern that Tray had TOO MUCH antibiotic for his pre-med. (Tray has to be pre-medicated with an antibiotic prior to any type of mouth work being done, as a precaution against developing a serious heart infection from the loosened bacteria in the mouth) But after a quick call into the pharmacy who confirmed the dose and amount give, all was fine. Tray has PERFECT teeth so far!! There are some mild dark spots on his back teeth, but those are from all of the antibiotics he has had and the matainence antibiotic he takes because he has no spleen. So she was thrilled with his teeth.
Then there was concern because I forgot to mention that Joshua had a Port-a-cath until after his cleaning was done, and they thought he should have been pre-medicated too! But again, after a quick call to the clinic, it was confirmed that he did not need the antibiotics. The dentist was not happy with his teeth at all. The radiation and chemo did terrible things to his new 6 yr molars. They came in absolutley filled with holes and decay. She, meaning the dentist, warned us that this may happen and we will deal with it as it comes up. But it is still not something any mother wants to hear, that her child's teeth are in TERRIBLE shape and will have to deal with a life of ongoing dental issues. So he will have to have surgery to put on 2 crowns on the top two molars, and the bottom ones will have to be filled completely. We are keeping our fingers crossed that the rest of the molars will NOT look like these, but the odds are strongly against him.
On another note, our poor neice Kali has developed a severe case of the chicken pox!! Despite having had the vaccine. So I had to call the doctors to let them know that Joshua and Annette had been heavily exposed and to see if they needed the special shot to help their immune system fight the virus. Nettie luckily just had her IVIG last week, so she as plenty of protection from that. Joshua needs the shot, but tomorrow he is getting his infusion so the doctor thinks that the IVIG will be just as beneficial as the VZIG(varicella zoster -another name for chicken pox- immuno-globulin)shot. She is going to call later today to let me know if I have to bring him in tonight for the shots (he needs two because the dose is so big- and they HURT like the dickens!!!) So hopefully he will not need them.
Tray should be all set because he had the vaccine and his immune system is set against viruses.
Just another typical day in the Curkendall household! LOL I will update tomorrow to let you know how it all works out.
I will ask for a little prayer for Joshua, as his MRI is on Thursday and this is his last one before he hits the big 5 year mark since diagnosis!! I am sure everything is fine, but a few extra prayers can't hurt.
Till then,
Take Care and God Bless.
Renee
Thursday, November 14, 2002 at 04:35 PM (CST)
Hi everyone,
Well, the house saga continues and we continue to wait for the banks to come forth and give us our comittment letter to move on with the finalizing of this purchase. However, they seem to be stuck on the one little fact, that our bankruptcy (we had to go bankrupt because our health insurance would NOT pay for any of Joshua's stem cell transplant which came to a whopping $220,000, sorry didn't have that in my back pocket, lol) won't officially be two years old until the 6th of December. So they are holding up the whole process for 3 lousy weeks!!!!! The sellers are getting VERY impatient and though we have been trying to stall them any way we can but they really want to close on Dec. 1st. OHHHHHHH, the stress!!!! LOL
As for the kids, all are doing well. Nettie had her IVIG at the hospital today and was pleased to know that we got permission from the clinic nurse to move back to doing her infusions at home. I did bring up one little concern that we have been having with Nettie. She has been staying up late (like till 3:00 am) almost every night, talking to her "imaginary friend" - Her Sister. She says things like she can't sleep because Her Sister is talking all night and she won't leave the room. Now, as a mother, I was a little concerned but didn't give it much thought until Her Sister, began showing up in our van, at our dinner table, etc and Nettie would say that she was bothering her. OK, yes, I'll admit, this is strange!!!!! So I brought it to the NP's attention at her clinic visit today and the nurse practitioner felt very strongly that it was one of her HIV medications, called Sustiva, that was responsible for the "hallucinations". Now I was just thinking that this was a phase, but the nurse said this is a common side effect, along with very vivid dreams and in extreme cases, psychosis. We are to change the time the medication is given so it is closer to bed time and see if that makes a difference. If it doesn't, then we may have to take her off of it to see if there is any change, however, that would be an awful sitution, because she has very few medications left that she can use to control her disease (she has been on virtally all of them at one point or another). So hopefully just changing the time should be enough to solve our sleepless over imagination! LOL
Joshua has had to cut back on his seizure medication due to the excessive urination, and though he is still going a lot, it is improved. The even better news is that he hasn't had a seizure yet since lowering the medication. So hopefully he won't need to increase it again. Next week is his IVIG and the next day his MRI. So I'll update more then.
Tray is doing FANTASTIC!! Had a bit of a cold, but came through it with no problems. He is getting big and looks great! The doctor called to let me know when his MRI is scheduled but I missed the call, I'll find out tomorrow.
Well, until the next time! Take Care and God Bless,
Renee
Thursday, November 07, 2002 at 10:09 AM (CST)
HAPPY BIRTHDAY TO TRAY, HAPPY BIRTHDAY TO TRAY, HAPPY BIRTHDAY DEAR TRAYVON, HAPPY BIRTHDAY TO YOU!!!!!
We LOVE you baby!!
Tray turns "four year old today" as he would tell you.LOL He looks and feels great and we are so pleased to be able to share another birthday with him. This month is his 18th month living with us!!! I can hardly believe how fast that time has flown by!!
We are having a little party here tonight with just the 5 of us, but on Sunday we are having the whole family and several of his little friends over for the "big Barney party" he asked for!
Everyone is doing well. Joshua continues to have a difficutl time with excessive urination. We have a call into the neurologist, but no call back yet. I think we are going to have to cut back on this medication and increase another, but that one may cause a significant increase in sleepiness, so well just have to play it by ear.
Nettie is doing great!!
Well, need to go and prepare for a party here tonight!
Take Care and God Bless,
Renee
Tuesday, November 05, 2002 at 04:22 PM (CST)
Hi everyone!
Well, it has been a whirlwind week here so far! We've seen several doctors in the past 2 days and a new problem has arisen. So I'll give you the lo down as best as I can.
Tray was seen by the Neurosurgeon and it was quick and painless for the most part. It would seem that Tray simple has a VERY small head, and though his head is growing, it is so at a very slow rate. His brain volume is "probably" significantly reduced thus the reason his skull isn't growning in response to it. The doctor felt that this was probably the result of several infarcts, the first of which mostly likely happened in utero thus the reason he has been microcephalic since birth. In addition since his mom used alcohol during the pregnancy, many of these kids have a smaller head circumfrence. The good news is that he is completely proportional (face to head size) so though his head will look smaller as he grows larger, it won't be out of proportion to his face. We are going to do an MRI sometime in the future to see just what his brain looks like and if there are any infarcts (old stroke damage) that can be seen. So not the greatest of reports, but by no means the worst!! LOL
Joshua had his hearing retested and it is completely stable. He has an identical lose as he did last year so now we get to go to once a year tests. However, Joshua has had a new problem that has come up with Joshua. Since Saturday he has had a huge increase in urinary frequency and urgency. So we had to have a couple of extra doctors appointments to rule out some more serious reasons (ie. diabetes). Those came out negative as well as a test to see if he has a urinary tract infection. Since neither of those are the reason, it is suspected that it is his seizure medicine that we increased to stop his seizures. One of the "infrequent" side effects is urinary frequency and urgency as well as nighttime wetting, all of which Joshua has. So now we have to decide how to address his medications without causing an increase in his seizures again. It's always something with this kid!! :-)
Nettie is doing well, with the exception of one really severe bout of reflux that really caused her a great deal of discomfort. She cried and yelled that her throat and chest were "killing" her and she couldn't take it. But after several doses of tums, rolaids, pepto and a glass of milk, we had it under control. She is up at her old school where she still attends girl scouts, helping out at a bake sale they are having to raise money for a trip to Philidelphia at the end of the year.
Well, that is is for now. Gotta go pack and finish dinner!
Take Care and God Bless.
Renee
Friday, October 25, 2002 at 08:08 AM (CDT)
Hi everyone!
Just wanted to send a quick update to let you know how proud I was of Joshua yesterday. Now, many of you may know via these updates, that Joshua HATES having his port accessed. However, this month and especially this past week Peter and I talked and practiced the process of accessing in a fun and non-threatening way. Well, yesterday was his IVIG infusion and he had to have his port accessed. I am thrilled to report that he just laid there on the table, with his hands behind his head and let the nurse access him with NO PROBLEMS!!!! I was soooooo proud of him. Then at the end of the infusion he had to have two shots. Not one, but two!! He had his flu shot and his 2nd prevnar. He did great for both of those too, although he jumped right before the second one and accidently pulled his needle out of his port. So to add insult to injury he had to have the needle pulled out all the way and re-inserted without any emla cream. He did cry and moved his legs, but otherwise laid there and didn't fight or try to get away like he would have, just a month earlier. I was truly amazed as was the rest of the staff at how well he had improved in just one month.
The doctor and I talked breifly and she felt that since starting IVIG he has had NO infections, she would be hard pressed to be convinced as to way they would take him off of it until summer. I was relieved to hear that. They will have a meeting after his 6th infusion in December and then the team will decide if he should continue. I think enough of the docs feel he is doing soooo much better that I can't imagine that they would say he has to stop.
Well, that was all. Tray and Nettie are doing fine. Tray has a cough, but is fine otherwise.
I have to go to work now, talk more later!!
Take Care and God Bless,
Renee
Monday, October 21, 2002 at 02:04 PM (CDT)
Hi there everyone!!
Well, it is final, we are moving!!!! The house thing worked out and it is our hope to be in our new house by Christmas. I am sad and thrilled at the same time. This house is the only one that Joshua remembers, Tray has ever know (with us) and that Annette has ever really called home. It has been home for us for over 5 years. It has served us well. But the new house is much bigger, is beautiful and has a pool. So in the end it is for the better, but I'm still sad.
The kids are doing well. Tray has been doing great since his visit with the doctor in NYC and has had no problems. Still waiting for the ok to take him off his coumadin like the docs in NYC want, but no word from our local doc yet. I'm patient though. LOL He has an appointment in 2 weeks to see a neurosurgeon. Tray has always had microcephaly (his head is much smaller than average), however, his head circumfrence has not increased at all in the past year despite significant growth everywhere else. His neurologist recommended us taking him to a neurosurgeon to be sure that he dosen't have something called craniostenosis (the suture lines in the skull close prematurely, resulting in a skull that is unable to grow to accomodate a growing brain). Developmentally he is doing GREAT so I don't think that this is the problem. But if it isn't, then the reality is that there is a strong possibility of significant problems for Tray in the future if both his head and his brain are not getting bigger, explanations are not needed for that I don't think. I always pictured Trayvon in High School with his brother and out hanging out with his friends and the such and to think that he may have the potential for severe delays if his head growth slows to a halt at only 3 years old is hard to swallow yet. But, alas, nothing I can do by worrying about it, so we will go to the appointment and see what the doctor thinks. If it is craniostenosis then he may need a big surgery on his skull to add bone to it to make room for his brain to grow, but that may not have to happen until there is evidence that his brain is "squished" and that may be some time down the road. Who knows.
Joshua is doing well. He was suppose to have surgery to replace his ear tube that fell out but the ENT thought his ear looked GREAT and his pressure was wonderfully normal, so surgery was cancelled and we will be followed every 2 months instead. Hopefully with the IVIG his body will be able to reconstitute his immune system and his ear and sinus problems will be a thing of the past. He has had only one "possible" seizure since increasing his meds, so I think we are definately on the right track there. His next MRI is in November and I think we go to yearly scans after this one!!! Peter and I are nervous about that, but it is a wonderful sign of moving in the right direction, away from cancer! LOL
Nettie has had some belly aches and diarreha issues lately, but this weekend she wasn't to bad, so hopefully that has moved on. She is doing soooooo good in school it is hard to believe she is the same girl! I spent 5 hours taking her braids out yesterday so now she has "bushy" head syndrome again! LOL Have to go buy a new perm today. :-) We are going to make an appointment for her to have her wheelchair reviewed, as she has grown so much she doesn't fit in it the right way anymore! I don't know what kind of begging, borrowing or pleading I am going to have to do to get a new chair for her, but she needs one!
Well, that is it for now.
Take care and God Bless!!!
Renee
Friday, October 11, 2002 at 11:00 PM (CDT)
Hi everyone!
WOW, what a whirlwind week! But it was a good one. Joshua and I left on Wednesday for NJ to see his neurologist. Unfortunately, though he has been stable for almost an entire year, Joshua started having more seizures this past 2 weeks. We counted a total of 5 in that time period, of which only one was actually witnessed by myself, but the extreme need to sleep afterwards has been the key that he has had one. So off to our appointment. We use Angleflight each time we go and stay at the Holiday Inn close to the airport. I have nothing but the utmost respect and admiration and thankfulness to express. Angelflight went out of their way to be sure that we got down and back in just 2 days thus avoiding the need to pay for another night in the hotel. Our pilot down developed a bad head cold and couldn't make the return flight, so Angel Flight looked high and low and found us another wonderful pilot who was able to take us back.
Sooooo, anyways, the doctor's appointment, Joshua has gained 22 pounds since he was there last year and it is obvious that he has simply outgrown one or two of the meds. We know that his Tegretol is not the one, because his level is perfect. So we increased his Neurontin to 1200mg three times a day (up from 900mg three times a day). If the seizures stop, the doctor would like to try increasing his Diamox and decreasing his neurontin because he doesn't want him to "outgrow" this drug and the maximum dose is 1800mg TID. So we'll hope to gain control of them and then wean him down on the one and move him up on the other. Make sense to you??? I did want to mention also that the Holiday Inn in Hasbrouck Heights, NJ was, once again, superb to us. They let us check out at 2:00pm so that I could take Joshua to the mall (which they shuttled us to) before flying home. They also approved their shuttle driver to take us to the doctor's office in Teaneck, NJ so we didn't have to pay the $80.00 round trip taxi fee. They happily took us to the airport and in the past have been there waiting for us when we arrive. They truly go out of their way for you and yet are VERY reasonbly priced!
Tonight we just returned from a wonderful night at a WWE event in Utica. A saint named Suzanne from Share-A-Card was kind enough to contact the WWE on behalf of Joshua. The WWE responded by sending him a box of wonderful merchandise and 5 tickets for the even tonight. Annette wasn't feeling well so it was just the boys and Peter and I. It was sooooo much fun!!!!!!! We had EXCELLENT seats and the boys got right up close to several of the wrestlers. Joshua became profoundly tired towards the end, luckily we had brought his adaptive stroller to sit in. But he enjoyed himself so much! Tray really got into too! He was yelling, cheering and copying the fans around him, it was to cute. THANK YOU SHARE-A-CARD and SUZANNE!!!!!!
The house thing is still in the works and it is very possible it isn't going to work out for this one. It will need a lot of work and we are going to rebid to try and work out a deal to make the house more affordable for us and allow us to still make the necessary improvements that are needed. I am thinking that it isn't going to go through, but everything happens for a reason is my motto. So well just have to wait and see what God has in store for us.
Boy, am I tired! I've gotta run now.
Take Care and may God shine his grace upon you!!!!
Renee
Friday, October 04, 2002 at 08:33 AM (CDT)
Hi everyone!!
Well, we had the follow-up with the NYC cardiologist with Trayvon. The great news is. . .the meds are doing the job!!! Tray's ventricle function is doing much better and though his valve continues to leak, it is much less than 2 weeks ago. So the consensus is that Tray will just have to take these meds for a very long time. The one thing that was clear though is that his valve is going to have to be completely replaced at some point in his childhood. Eventually the medications will no longer work - due to chronic, long term use, growing body size, hormone changes in adolescence, etc. etc.. Hopefully it will hold out until he is a teenager and by then, who knows what the technology will be! They may not even have to do surgery or artificial valves anymore! So only time will tell, but for now he is doing very well on the meds and there is no reason to think, as long as we don't play with the meds, that he won't continue to thrive. :-)
Joshua has been fighting a cold for over a week now and I am fairly confident that he has a sinus infection, but we are hoping that between him, the vaccinations and the IVIG, he will be able to keep it in check and will fight it on his own. If on Monday he is still miserable, I will take him into the doctors for antibiotics.
Nettie stayed home from school yesterday because she had a low grade temp and her lungs sounds were decreased. In actuallity, she was fine, but since she sooooo rarely has a cold or any illness anymore, she really plays it up when she is sick. LOL So she vegged out on our bed watching tv, eating cheese doodles and drinking punch, having nebulizers and relaxing. Boy does all of that sound good! LOL
Willow is doing great now with his 3 remaining legs! :-) And Kama is working hard to not get stung by anything else that will make him allergic. Granted, that is a hard task for a dog, but he is trying! LOL
We did put in a bid on a new house and won the bid, now we are just waiting for the green light from the mortgage people. I hate waiting for anything!!!!
That's about it for now.
Take Care and God Bless,
Renee
Thursday, September 26, 2002 at 04:52 PM (CDT)
Hi everyone!
Another week down. At least I think it has been a week since I updated! LOL
Joshua had his IVIG today and did great with the infusion. But accessing his port was. . . again, a nightmare! But we did it and he was fine afterwards. So far NO infections! He is having his ear tube replaced, again, on the 15th of October. Hopefully this will be the very last time. He is also going to NJ to see the neurologist for his yearly check-up on the 9th of October.
Tray saw the cardiologist again for an unscheduled appointment, because his face has continued to swell and he has been vomitting again. However, the doctor feels that he is trying to get over a virus and this is the reason his nose is running so much and he is coughing, resulting in some reflux and vomitting. So we continue to take the wait and see approach at this time. He does in fact look considerably better today, though the cough is still very present. His rash likewise is still the same, so his exczema has remained unchanged. We go to NYC on Wednesday to see his old cardiologist and I have copies of the echo tape and x-rays taken last week to compare the ones done next week. Hopefully things will look ALOT better!!
Of note though, his coumadin levels had gone way up and so we have to recheck that again Monday, provided he doesnt develop any bleeding or bruising before then. This just solidifys my resolve to get the machine that checks the pt/inr for home. People with diabetes have glucose monitors so why should insurances get to deny the same kind of machines for those on coumadin!? However, that will have to be a fight I take up next month.
Nettie is doing AWESOME in school!!!! She is doing double digit addition with NO assistance and aced her first spelling test that had 5th grade words on it!!! She continues to do very well health wise, with only intermettent episodes of severe heartburn. I'll take that over what she has had in the past.
For those wondering how Willow the killer rabbit is doing. Sadly I have to report that the casting did NOT work. He developed a severe infection and an open fracture that resulted in the need for his leg to be removed at the hip in emergency surgery. I now have a three legged rabbit who doesn't seem to see his new physical characteristic as odd at all. He can hop and even pull himself up, if his front paws are on something also!
Kama, Annette's service dog has developed a continued allergic response to something that has bitten him. So back on the prednisone, antibiotics, benadryl and topical steroid spray!
The animals are now more medically fragile than the kids are! LOL
If you are still with me, the house hunting is still going on. Getting a bit more frustrated!
Take Care and God Bless.
Renee
Friday, September 20, 2002 at 08:11 AM (CDT)
Hi everyone,
Well, we were suppose to have our appointment with the cardiologist next Thursday, however, Tray does not like schedules! He felt it was necessary to give mommy a scare and make an emergent appointment to the cardiologis just to add some "spice" to our so very boring lives (Yes, lots of sarcasm there people!). Tray woke up (the morning that I wrote the last update) and was VERY swollen in his face. It was by far the worse day yet and this was with an additional dose of lasix given the night before. So I called the cardiologist and he wanted to see him right away. So I picked him up from school and off we went. After an echo, an ekg, some blood work, and a physical, we have come up with an answer. Tray's heart can NOT tolerate a reduction in any of his medications. His valve was leaking badly and his only ventricle (the right one) is not pumping well, resulting the the backing up of fluid and subsequent edema. We increased his medications back up to pre-surgical doses, and added an extra diuretic. It is hoped that these problems are in fact a result of the medication reductions and not in fact evidence that his heart is just getting tired. This was always a possiblity, but not anticipated until much later in life (early adolescence - late teens). But we are not focusing on that right now. I fully anticipate that the medications will help to right the wrong an he will not have any further major problems. Today is the 3rd day on the meds and he is definately less swollen. However, he continues to vomit without provocation and has the persistant cough, but I think more time is needed. We go back to see his cardioloigst in NYC Oct. 3rd to do post-op follow-up appointment. However, now we are going to be comparing this recent echo to the one to be taken on the 3rd to see if in fact his heart has made a full recovery.
I'll update you on those results.
Joshua continues to do well. He did complain yesterday that his ear was hurting, but he tolerated having his hearing aids put in, so that means that it is not THAT sore. LOL He recieves his next dose of IVIG next Thursday.
Tomorrow is his 7th birthday!!!!!!!!!!! It is so hard to believe that this little boy who has come through sooooooo much in life is going to be 7 years old! 4.5 years ago, my husband and I sat there as the doctors told us that his odds of survival were less than 30% with the very best of treatment. It was 0% without the treatment and the odds of not having major deficits as a result of the surgery was very low also. So we said good-bye that day to the son we knew and sent him to surgery to have the monsterous tumor removed. We said hello to him again 20 hours later in the ICU and we knew then that his life was going to be forever different. Though in fact, life is different, I am forever grateful that life is going, period. Different is far better than gone and in many ways, different is better. So, HAPPY BIRTHDAY JOSHUA, we love you!!!!!
Nettie is doing well as well. She had her IVIG yesterday without incidence!
Well, that is all for now.
Take Care and God Bless.
Renee
Tuesday, September 17, 2002 at 09:39 AM (CDT)
Hi everyone!
I know it has been a while since my last update, but I have a valid reason!! I moved our computer back into our bedroom on a whim when I was on a whirlwind cleaning spree. But because of that, I had to wait until they came and turned the cable on for our internet service.
But now it is on and I am up and running!
They kids are still liking school (granted they're only in the 3rd week of school! LOL).
Nettie has acclimated to her new program and teachers and school without missing a beat. She already got a 100% on a spelling test!! She is also back to trying to use her forearm crutches, something that she refused to do at her old school with her old therapist. I was thrilled to hear this and hope that maybe, just maybe, the dream of her walking independently has not gone completely out the window!
Joshua has had a few transition issues since school started. The teacher's are working hard to get a solid routine down so he feels more in control of what is happening and thus reducing the amount of time he feels confused, thus reducing the chances of outbreaks. He had 2 good days last week so we hope that we are moving in the right direction! His birthday is also this Saturday!! He will turn 7 years old!!!
Tray is doing really well in school with the exception of one bad day when he was hitting and scratching the teachers. However, health wise Tray has developed some little glitches. He has recently begun to retain fluid again, necessitating the need for an increase in his diuretics again. In addition, he has developed a cough which is very reminiscent of his "cardiac" cough he developed prior to his last surgery. I am very concerned as we are only 6 months out from his last surgery which was suppose to "fix" the problems!! He has a scheduled follow-up with the cardiologist next week where we will do a complete evaluation. The cardiologist is aware and he is concerned too, at the sudden onset and at times, the severity, of the edema and fatigue.
As for the house hunting, we are still hunting!
Willow continues to heal well.
Kama (Nettie's service dog) had another trip to the emergency room. He developed another severe infection from a bite of some sort. This one was on the side of his neck and his entire side of his face swelled with fluid and infection, so now HE'S on medications too!!! LOL
Got love our house! HEHEHEHEHEHEH
Take Care and God Bless.
Renee
Saturday, September 07, 2002 at 07:52 AM (CDT)
Hi everyone!
Well, all three kids survived their first week of school. Nettie said it wasn't nearly as bad as she thought it was going to be. She was the first one to start getting phone numbers of other kids to call over the weekend. She is sooooo socially appropriate! Her regular ed 5th grade teacher thinks she is a riot! I guess he is kindda of clumsy and trips rather frequently. Well the other kids in the class aren't sure if they should laugh, but NOT Nettie! She'll just sit their and laugh until she's drooling, cracking the rest of the class up and making her teacher fall over in stiches. He loves that she has such a great sense of humor. Everyone that meets her will comment on the fact that despite all of her challanges, and delays in academics, and medical difficulties, she has a fantastic sense of humor! That's my girl!
Tray had a great first week, with just a little excitment mixed in. When he arrived at daycare Thursday his daycare mom noticed he had a lot of dried blood in his ear. So I was called to come and get him and take him to the doctor. I was on my way home from taking Willow (the rabbit) to Cornell for his weekly cast change. After the doctor looked at it and was unable to determine the cause of the blood it was thought that maybe his coumadin level may be to high and we should check it. Now, getting blood from Tray is harder than trying to pull teeth on a fully awake tiger! Then after all of that torture, the lab values were wrong and he has to go back for more blood on Monday. But the good news is his ear never bled again, and he was happy as a lark at school! LOL
Joshua seems to definately have A LOT more energy!!! He is staying awake in school and he is not falling asleep on the bus! Even on the first day of school when he was on it for over an hour! He's still running and going strong in the evening too (maybe to strong! LOL). He seems to like school so far and his new sign language interpreter is very nice. No infections thus far and his back continues to heal nicely from his little window experience.
For those wondering, Willow the rabbit is likewise doing very well. He had his third cast change on Thursday and is not scheduled for another one until the 23rd of September and then we will x-ray his leg and if all is well, we will remove the cast for good. He'll still have to be in the cage for another 2 weeks until he gets use to using his bad leg again, but hopefully he will be good as new once all this is over. The doctor even felt that his leg had not lost ANY length and that it was healing GREAT!!! YEAH Willow!
The house hunting is still going, but we're not having as much fun now! LOL Kind of frustrating finding the right house. But we will, I know it.
Well, Take Care and God Bless!
Renee
Friday, August 30, 2002 at 07:00 PM (CDT)
Hi everyone!!!
Well, it was a very busy week this past week. First of all, Joshua had his second IVIG infusion yesterday and sailed through it with flying colors!! He did NOT like having his port accessed but once the needle was in, he settled right down. But it did take 4 of us to get it done! LOL. They ran it over 5 hours which felt like a lifetime. Next month they will do it over 4 hours and then down to 3.5 and then down to 3 etc, until he is about 2 hours with NO reactions. He also got his first immunization of Prevnar the shot to try and boost his immune system to fight off the common bacterias that cause all of the ear, sinus and lung infections he is plagued with.
We did find out during his exam, that the brand new tube just put in his ear to replace the old infected tube, has already fallen out! AHHHHHH. We are hoping that with the IVIG, he will not develop as severe infections as he has in the past, thus avoiding the need for any more surgery.
On another Joshua note, he fell through a glass window in our bedroom after jumping and falling on our bed. Fortunately the blinds were down and there was a screen in the window to keep him from going all the way out the window and to the ground. By the Grace of God, he only suffered a long, bloody, superficial cut down the left shoulder blade. It was one of the scariest moments of my life! But he is fine.
Nettie is doing great, but is having difficulty with the fact that she is going to her new school next week. She really is going to miss her old special ed friends and is scared that the new kids won't like her as much. I know in my heart that she is totally wrong, but she will have to see for herself next week. Nothing I say is going to convince her otherwise.
Tray is doing very well also. He visited his new classroom on Tuesday and meet his new teacher. She is very nice and they are so excited to get him, as they heard such great things about him from the summer school staff! LOL He is going to be in a class with several other 4 year olds (or almost 4 yo) who will also be going to Longbranch Elem. kindergarten next year. So hopefully he will already have some little friends to start school with next year! Can you believe he will be in kindergarten next year! Well, maybe you guys can, but I am having a very difficult time with that concept! LOL
Joshua and Tray go to NYC next month for their appointments. Tray will see his cardiac surgeon and old cardiologist, and Joshua will see his neurologist.
I think that is about it. Oh yeah, did I mention, Peter and I are house hunting! It is so much fun!
Take Care and God Bless.
Renee
Sunday, August 25, 2002 at 06:49 PM (CDT)
Hi everyone!
It's been a while, but no news is good news! The kids have been off of school for the past week and doing well. However. . . our poor rabbit hasn't faired so well!! Peter and I went away for our trip to the mountains (sponsored by a support group I attend) and had a wonderful time last weekend. When we got home we were informed that Willow (the rabbit) had not been out since he was frightened by the new puppy my sister-in-law had brought by the house to show the kids. So in search of "my" baby Willow I went. I found him shaking and soaked with urine behind the couch. Assuming he was just frightened out of his mind I comforted him, cuddled him and gave him a bath (yes, my rabbit loves to take a bath in the sink with bubbles). It wasn't until I set him down on the floor when much to my horror, his right hind leg was pointing the wrong way!! When I picked him up his leg was just flopping around like it wasn't even attached to him. Very gross to be perfectly blunt. Teary eyed and absolutely beyond reasoning with, I had my husband call the emergency vet to see what to do. Answer: wait until morning and go to your vet. So off to the vet we go first thing Monday morning. She takes x-rays and tells me that he has shattared his right tibia in 3 peices and he needs to be seen by an orthopedic surgeon ASAP to have pins and plate put in! Good God. . . now, don't get me wrong, I LOVE MY RABBIT, but we're talking MAJOR surgery with no insurance!! So I take him instead to Cornell Universities Veternarian school's hospital and have him seen by the, get this, "exotic, small mammal" specialist. He likewise informs me that the BEST treatment was to do the surgery which would include a 3 day stay in the ICU and at the cost of at least $1,200!! The second option was to cast the leg in a traction state and let the healing begin, but his leg will be shorter than the other. I can handle a rabbit with a gimp and a bill of $151 much better than a perfect rabbit at $1,200. So now I have a rabbit confined to a cage, on TID pain killers, being forced fed a Critical Care diet and requiring daily perianal cleanings as well as applications of cream and powder to behind to prevent urine scald!! You have NO idea how hard I have laughed at the irony of this whole thing. I finally have one week when the kids are ALL healthy and the RABBIT is sick!!!! LOL
Joshua is going in for his next infusion of IVIG on Thursday. Friday he has a check up with the Pediatrician and tomorrow Tray has an appointment for a check of his PT/INR. So we have a busy week. In addition, Willow needs to go back to Cornell to have his cast changed on Wednesday.
School starts September 2nd (I think that is the day after Labor day). We are going to Peter's home town to see his sister get married next weekend.
I think. . . that is it for now. :-)
Take Care and God Bless.
Renee
Thursday, August 15, 2002 at 06:38 PM (CDT)
Hi everyone!!
We are home! Joshua and Nettie had a great time!!!!! Apparently Joshua was wonderful all week and had no problems until. . . I showed up for the talent show the night before the last day.
All parents are invited to come and see the talent show done on the last night. I was thrilled to go and see Nettie and Joshua on stage. I made the mistake of letting Joshua see me before he went on stage, and he cried that he wanted to come back and sleep at Grandma's house that night. I told him ok, IF he did a good job on stage for his cabinmates. WELLLL, He did FANTASTIC!! He sang and signed "God Bless America" all by himself. Everyone cheered him and started chantting "USA, USA" after he was done. I had to keep wiping the tears from my eyes so I could manage to get some pictures of the whole thing. :***), I was just so proud of my "little" boy. Nettie declined again this year to do anything for the talent show. She HATES to have people clap "at" her. She gets soooo embarrased. So I just waited until today to "bother" her when she was getting ready to get on the bus. I was amazed at how well she fit right in with the older girls even though she is really developmentally much younger. She "fell in love" with a counselor named Chris from an adjoining cabin. She was embarrased to tell me, though it didn't take long before she cracked and let the cat out of the bag! LOL She oozed attitude while there too, I could see it from across the camp as I watched her while I hung out with Joshua at his cabin. She didn't even know I was there all that time! I drove Joshua home with all of the supplies, bags and equipment. Nettie took the bus with her friends and her homecare nurse, Joanne, met her at the pick-up point.
Tray and I had a great time with Grandma. We went up Gore Mt. on the gondola, took a scenenic train ride along the northern end of the Hudson River, visited Stone Bridge and Caves (wonderful site!), swam in the river and at a beach and walked the quaint streets of Saratoga Springs. I even managed to finish the back to school shopping while out there! Tray was on his best behavior and ate like a horse. The only downer to entire week was this blessed HEAT!!!! It was hard to walk along a mountain when it was 96 degrees out!
Peter is pleased we are all home, safe and sound. He also did a great job on cleaning out the basement like I had asked him!! Yeah Peter! Thank you honey!
Joshua finished his IV medication as planned at camp and other than a bad stuffy nose, seems very well right now. Here's hoping that that was the last time for that experience now that he is on the IVIG.
The next 2 weeks will be filled with doctor appointments to get them out of the way before school starts.
Hope your summer is going well!!
Take Care and God Bless.
Renee
Friday, August 09, 2002 at 07:23 AM (CDT)
Hi Everyone!!!
Hope all is going well for the world out there! LOL Things are slowing down a bit here (thankfully). Nettie and Joshua are leaving for camp tomorrow. I will be driving out and staying at my mother's (who, by the way, conviently lives only 5 miles from the camp!) with Trayvon. Peter will be all by his lonesome. But don't worry, I gave him a list of things to do while I was gone (the biggest being to empty out the basement!) LOL.
Joshua is still doing his IV antbiotics and will until Monday morning. I will then go up to the camp and take out his needle (deaccess his port) for him. Then we just sit tight and wait and see if the infection has been completely cleared. They gave us the option of using oral Ciprofloxin, but is has a history of causing serious tendon damage in young children and the ID team felt that there were no gaurentees that it would really keep the infection down if it is in fact still there. So we declined it. Hopefully that was the right choice. He has been very irritable and tired this past week and I hope he holds up for camp!
Nettie has started a new anti-diarreha medication. She has been having a big problem with this and the old medications weren't helping. This new one has definately shown a slight improvement and with longer use, I think it just might do the job! It is a drug they use with Irritable Bowel Syndrome, so I think that is more and more the direction they are thinking all of her symptoms are. It makes sense so I am glad they are treating her as though this is the diagnosis.
Tray continues to do FANTASTIC! His last PT/INR (bleeding time) was perfect so his coumadin stays at the current dosage. We don't have to go back until the end of September! Then he will have his whole cardiac work-up to be sure all is still well with the little ticker. I know all to well now, that how he looks on the outside can be completely the opposite of how things are working on the inside so I will be happy to have the appointment to take a good look.
Peter and I go on our weekend away next Saturday!!1 YEAHHHHHHH.
Take Care and God Bless.
Renee
Saturday, August 03, 2002 at 04:50 PM (CDT)
Hi everyone,
Well, it has been a busy couple of days. Joshua's ear did NOT do better on the ear drops so we were admitted to the hospital for IV antibiotics. But then they decided to go ahead and expidite the port surgery so that was done too. However, the results of his sleep study came in and it was determined that he had a classic case of "upper airway restriction" syndrome. So the ENTs decided that they would join the surgeon in the OR and replace the infected tube, remove his tonsils and do a bronchoscopy to see if there is any reason for the airway problems during sleep. He was in surgery for longer than I would have liked, but he did great! His port is in, and we are very pleased with where it is, his tonsils are out and his ear is doing much better. We are leaving in just a little while when his IVIG dose has finished. We will do 9 more days of IV antibiotics at home and then do 2 more weeks of oral antibiotics to be sure that the infection has been completely cleared. Hopefully we are making all the right moves towards health and he will be doing MUCH better by the time school gets started. Well, that is it for now!
Take Care and God Bless.
Renee
Wednesday, July 31, 2002 at 08:42 AM (CDT)
Hi everyone!
Joshua's ear is continuing to give him problems. The culture of the drainage grew pseudomonas that was resistant to all but three different antibiotics, 2 of which are IV. The 3rd was clindomycin, however, children under the age of 18 should not get it because it can cause spontaneous tendon ruptures. We saw the ENT yesterday and he cleaned out the ear and decided to make one last ditch attempt at treating the ear without admitting Joshua. He put clindomycin "eye" drops in his ear. Since the bacteria should be suscpetible to this drug we are hoping it can get down past the tube and to the actual infection, not just the outter canal. If by tommorrow morning there is STILL drainage from the ear, he will be admitted and a temporary IV will be placed so he can get 10 days of antibiotics at home. If this happens then he will also be able to get his IVIG much sooner than waiting for the port surgery. Overall, though, with the exception of the goop pouring from his ear, he looks and feels good!! LOL
Tray has begun to develop a wet cough and I think that he is going to need to go back up on his Lasix again. I had been hoping that we would be able to take away the lasix all together, but apparently his little body is not interested in what I want! LOL His last coumadin levels were much to low also, so we had to increase his coumadin and go back this Friday for levels again. I will have them listen to him while we are there and let them determine how we should progress with the diuretics. However, he is doing GREAT with the reduction in his captopril (improves the hearts pumping capacity) and maybe that is one drug that he will tolerate having discontinued. Only time will tell.
Annette unfortuantely has not had any relief from the addition of the zantac. So I will be calling the doctor on Monday to request some testing. I do not want to take chances going from drug to drug if we are not even aware of what is wrong. Call me unreasonible.
Well, the weekend is coming and I am psyched for the Renassaince Fair!!!! I am also looking very forward to my weekend with Peter at Minnowbrook. We have been for 3 years now and it is such a much needed break from everything. I hope that all of our babysitting plans work out!
Take Care and God Bless.
Renee
Sunday, July 28, 2002 at 08:45 AM (CDT)
Hi everyone!
Not much has happened lately. The kids are enjoying the summer very much so far. I went with Nettie to a local beach with her summer school class and it was a blast! I plan taking the three kids back to this beach next week. We are going to the Renassaince Fair (spelling??) on August 3rd. It runs for 6 weeks about an hour from here. There's a jousting show, you eat giant turkey legs, everyone who works there dresses in authentic costumes and they sell toys "of the time". The kids love it!
Joshua's surgery for his port has been scheduled for the 26th of August. I had really hoped to get him in before camp, but it wasn't meant to be I guess. He has been batteling another really bad ear infection which we had to go in and have cultures taken again because the antibiotic is not working well at all. I should hear tomorrow what the verdict is.
Nettie had her appointment with the GI doc. That was a waste of time. He put her on Zantac and Loperamide (Imodium AD) which are the same two drugs she has been on for eons. He could have told her regular doctors the same thing without wasting our time going to see him!! I'm suppose to call him with the verdict on wether this is helping or not. So far, NOT! But I could have told you that before we started.
Tray has stopped the pukey thing, Thank God, that was getting a bit messy! LOL He is doing GREAT and really loves school. His cousin Kali is also going to his daycare for the summer so he loves going to daycare now too! He went to his first birthday party yesterday. His daycare mother's daughter turned 3. He enjoyed himself immensely.
Nettie and Joshua leave for Camp Hole in the Woods in 2 weeks. Tray and I are going to stay at my mother's who lives just down the road from the camp, for the week also. That way if there are any problems with Joshua I will be nearby. Next year will be much easier on Peter and I! I think. . .
Well, that's about it for now.
Take Care and God Bless,
Renee
Friday, July 19, 2002 at 10:11 AM (CDT)
Hi everyone!
Well, time has passed and some choices have been made. Joshua will begin his monthly infusions as soon as a "central line" has been put in. We are adamant that the "central line" they are referring to, be a port, however, the doctor said they are discussing a hickman as another option. We definately do NOT want the hickman again, especially if it is only for the purpose of a monthly infusion! But before any more discussion can occur, Joshua is going to have a vascular scan to see where the best sites to put any device will be. Then, depending on the location of the "best" sites, we will discuss what options exist for him. The plan at this time is to do the IVIG for 6 months. At the same time he gets these infusions, he will also recieve some immunizations. He will get 2 Prevnars 8 weeks apart. This immunization is designed to trigger the body into fight the 17 most common bacterial infections caused by the pneumoccocal strains. Since he does not respond well, they will give him 2 doses to see if they can "SUPER" booster his immune system. Then 8 weeks after the second Prevnar, and at the last IVIG they will give him a dose of the regular pneumovax that most kids get, because this one protects against 23 strains, where as the other one protects against only 17 strains. Hopefully with the Extra shots and the 6 months of "donated" antibodies, his bodies immune system will get jump started into place and will give him a much better chance at fighting off all of these illnesses. If, after they stop the IVIG and retest his immune system, he does not do better, then they will begin a long-term use of the IVIG to give him what his body can't do on its own.
At least now we have a concrete plan of action in place and a goal to reach for. Getting started is always the hardest part.
Nettie has her appointment with the GI doc on Monday to see what all this reflux pain is about. Tray is doing great, except he keeps throwing up at the most unusual times and unexpectedly. Last night we took the kids to go see the Crodile Hunter and he threw up all over his seat and the floor in front of him. Needless to say, I limited his popcorn and soda intake. But he was DEVASTATED at that move and protested loudly to be sure I knew that he was OK and his tummy was JUST FINE MOMMY!! LOL
We're going to the Pediatric Brain Tumor Foundation motorcycle drive on Sunday in Old Forge. This will be Joshua's 4th year going!! We are pleased to be able to show the wonderful people who raise sooooo much money, what their hard work is going towards!
Well, that's about all right now.
Take Care and God Bless.
Renee
Friday, July 12, 2002 at 07:17 AM (CDT)
Hi everyone!
It's been a very busy week here. Joshua had his appointments with the various doctors and his CT scans of his skull and sinuses. I'll start with what I know for sure first. Joshua and I had our meeting with the Immunology doctor to determine, what, if anything showed up in the testing that we did. As it turns out, a lot showed up! He did not respond well at all to the various immunizations that he recieved which means his b-cells are not working well. In addition, they tested his t-cells to see if they would try and respond to things we are all exposed to in-utero via the mother, and he had a problem with those too. So that means that his body ISN"T fighting infections like it should resulting in all of these blessed sinus, ear, and chest infections. The treatment recommendation was for a monthly infusion of IVIG. However, Joshua has poor veins. Kids who get chemo early in life tend to have much smaller and weaker veins and that certainly is the case with Joshua. We are successful at finding blood drawing veins but to find a large enough vein every month for a 4 hour infusion would be VERY difficult. But the only solution is to put in a port, which is a little device that has a tube that runs to a large vein near his heart. They simply push a needle into the little bubble under the skin and the medicine would then go straight to this vein. A port is completely covered by skin so he could still swim and stuff, but you have to be careful when wrestling and rough housing so as not to dislodge the catheters. In addition, it requires more surgery to implant the port as well as surgery to remove it or replace it if it something happens to it. So Peter and I have been having some discussions on this and trying to come up with a game plan. I'll let you know more as we do.
As for his CT scans. No word yet. I have seen the scans though and his right sinuses are completely blocked still, but with the new diagnosis of immune dysfunction, and the IVIG treatment to come, we probably will hold off on any type of sinus surgery until we see how well the IVIG helps. On his skull CT it is not as clear, but Peter and I feel that there are definately 2 locations that are not completely healed and will, in all likely hood, not heal completely together. There are plates and screws covering these locations, but they are much more fragile than the rest of his skull so I would be inclined to think the neurosurgeon is going to say "NO" to all contact sports. And with the need for a port now, it seems it was ment to be that way anyways!
I am very tired now. I feel like I have been fighting this fight for Joshua almost 4 years by myself. I have known for a very long time that he was not just getting the "normal" number of childhood infections, he was not responding "normally" to the antibiotics, and it isn't "normal" to have a sinus infection last for more than a year. Yet for 4 years I have been told that he is fine and "normal" now I am relieved and devestated that I was right the whole freaking time. He suffered needlessly for all these years and yet now that we know we can treat him (at least part of the way, IVIG will only help with the b-cell function)I don't know if we are ready for a port. He had a Hickman wich is just an external version of a port, for all of his cancer treatment. It feels like we are stepping back into a world I was ready to leave behind. The immunology doctor had even go so far to mention that he would like to know if Joshua had any remaining stem cells in storage incase he needed to have a booster. SIGH. . . there aren't any extras, so he will have to just slug it out for the rest of his life.
Ok, I'll go now. Trayvon and Nettie are doing GREAT! Nettie has her appointment with the Gastro doc in a couple of weeks, but since her H. Pylori treatment, she is doing much, much better!!! Tray is doing fantastic and has reduced several of his meds to only once or twice a day now!! YEAH! His Lasix is only once a day, his captopril is only twice a day and his aldactone has been stopped all together. Hopefully next month we will be able to stop the diuretic comepletly and wean him off of the captopril as well by school time.
Summer school is going great for everyone!
Take Care and God Bless.
Renee
Tuesday, July 02, 2002 at 02:30 PM (CDT)
Hi everyone!
Can you say HOT!!! It's 95 and the heat index is 105 degrees. . . YUCK! Our little pool has been a God send for the kids. Joshua and Tray have been at camp for the past 4 weekdays. Today is their last day. They have had a great time. I am so glad that they let Tray go. He LOVES doing "big boy" stuff with his brother. They've been at the beach all day today and I awaiting their return home as I write this. Peter and I gave Nettie's nurse the day off and took Nettie out to the Outlet mall about 45 minutes away. We went out to get her some new sneakers and shoes to wear with her new braces (which are wonderful and do a great job, but are sooooo much wider than any she has ever had before) but sadly we were unsuccessful. We did find her some clothes for her and promised to call some people to make some custome made shoes for school.
Nettie is feeling better since starting the meds for her H. Pylori. However, she caught the rotovirus and lost a bit of weight with all of the diarreha. But she has since recovered and doing well. We did decide to move her to the school where Joshua goes, it is the home school for where we live. She will repeat 5th grade again. This way next year when she is in 6th grade, all 3 children will be in the school at one time! Cooooool.
Joshua has a CT scan of his skull and sinuses on the 9th and a meeting with the immunologist on the 10th to discuss his results. The CT scan of his skull is to see if the bones have completly healed together and that there are no gaps. If there are gaps he won't be allowed to play any contact sports. The CT of his sinuses will help to determine if an additional sinus surgery will be beneficial to help alleviate his sinus infections and thus his chest congestion. I really DON'T want him to have ANY more sugeries! But we'll see what the scan shows. Tray has an appointment with the orthopedic doctor to take a look at his hip, but he seems to be improving steadily in that area. He is limping less and less and we are hoping that this is just a side effect of growth and it will completely disappear on its own.
Peter and I will celebrate our 9th wedding anniversary tomorrow. We are taking the kids to a Waterfun Park about an hour from here. I love this park so it will be a lot of fun. . .and lots of sunblock! LOL
Take care and God Bless.
Renee
Sunday, June 23, 2002 at 08:23 PM (CDT)
Hi everyone!!
Today was Trayvon's Baptism. It was a beautiful service and he did great (though the church was a bit hot!) He smiled through the whole thing and stood like a big boy with his brother as the Pastor walked them down a side aisle. She introduced Tray, and the other baby baptized today, to the church as a whole. Afterwards everyone came back to the house and Tray had a party! The kids spent the whole day in the pool while the parents sat outside and lost gallons of fluids via persperation! LOL Tray asked us to sing "Happy Birthday" to him and for a candle to be lit on the cake! So we did and then he opened his gifts. It is a birthday of a sort. :-) I made a nice poster to hang in the dining room over his scrapbook for the family to see. I included a poem I wrote and published, a letter for when he's older and an 8x10 of his new pictures taken on the day he was adopted (last MONDAY!!!!). I'll put some of it on the site for you to see before I put it in the scrapbook for him.
Over all it was a very nice day. This is the last week of school for Joshua and Annette. Tray and Joshua will be going to summer camp (Jr. Camp Good Days) on Thurs. Fri and Mon. and Tues of next week. They're going swimming everyday for camp except one, just at different locations (beach, pool, amusement park, etc.). On Thrus. though they are going for a pizza party and fishing at a fish hatchery. They go on a bus with adult counselors, a nurse, and about 10 Jr. counselors. Joshua always has had a lot of fun and he is excited to be "in charge" of his little brother while at camp.
We have an appointment on July 10th to see the Immunologist for Joshua. The oncologist did mention that the labs so far had come back with some discrepencies. So I anxiously await the results for the immunologist to go over with me.
Nettie is going to have an x-ray of her hand. This was a major desicion for the nurse practitioner and Fellow! They were also very suprised that her blood test for H. Pylori (which I requested to see if that was the cause of her stomach pain) was VERY POSITIVE. H. Pylori is the bacteria that is responsible for more than 80% of gastric ulcers. Now that I know a bit more after some research, it seems more and more likely that Nettie already has the ulcer. Normally it is usually very easy to cure these ulcers with some antibiotics, antacids and another medication. However, due to Nettie's HIV meds, she can't take any of the antacids or meds like Pepto-Bismol (apparently this is the key to eradicating the H. Pylori). So now they don't know what to do with her. So the are going to conference AGAIN on her situation and hopefully come up with a plan of action.
Well, that is it for now. Check the photo page, because I'll have new photo's up soon!!!
Take Care and God Bless.
Renee
Saturday, June 15, 2002 at 06:47 PM (CDT)
Hi everyone,
It's been a while since I updated you on anything! HAPPY FATHER'S DAY to all those wonderful dads out there!!!! Peter is going to really like what we got him for Father's Day, but I can't say what it is yet in case he checks out the site before he gets it! LOL
The kids are doing well. Joshua's labs came back, or I should say, some of them did, but they lost his t-cell blood work so we have to repeat that again. The labs should that he has all the correct number of cells in his blood, but his b-cells did not mount a response to a vaccine all children receive called the pneumovax. This vaccine prevents ear infections, pneumonias, and other infections caused by pneumococcal bacteria. However, Joshua's immune system did not try to fight off any of the bacteria when it was introduced to his system in minute amounts via the immunization. I have a meeting with the oncologist who has been working with the infectious disease doc., and will let you know what they suggest for a follow-up for Joshua. I am hoping that there are some suggestions forthcoming, because I am tired of my baby being sick all the time and noone taking it seriously!
Tray has us a bit concerned, but not in a life and death manner. He has been limping more and more over the course of the past month or so. His left leg is turned in a bit and he is walking with a sway back, not like he has been in the past. He sort of walks like he always has to go to the bathroom. He has had 3 doctors look at his leg and though he will occasionally complain of pain in his knee, he has no pain upon manipulation of the leg. So we are thinking that he has muscle "weakness" causing him to twist his knee easier and that is why it is hurting, but not why he is limping or walking and running so differently. I had even thought that maybe he had suffered a mild stroke, but the cardiologist really felt that, that wasn't the case, because his arm and hand are just fine. So he suggested a full evaluation by a an orthopedic doctor to see if there is muscle disorder or a hip abnormality causing the changes. So we have a July 9th appointment for that. On the good side with Tray, his cardiology appointment went GREAT ANNNNDDDDD His ADOPTION DATE IS MONDAY!!!!!!! He will be a full fledge Curkendall on Monday June 17th by 9:30 AM. Poor kid.... LOL
His Baptism date is for next Sunday and afterwords we are having a BIG adoption and baptism party to celebrate these wonderful events in his life!!! You are all cordially invited too!! :-)
Nettie is doing well. We did her IVIG without any pre-medications (Tylenol and Benadryl) so she was much more energetic and fun to be around when the benadryl wore off! Normally she is a grump head and we just leave her alone! But we thought it was time to try it without any meds and she did great!!! She does have this strange bump on her hand right at the base of the palm. It is very hard and feels just like the top of a bone, but she can move her hand around freely and it only hurts when you push on it (which of course we feel obligated to do to prove that it only hurts when you push on it! LOL) So we are waiting for the "teams" decision as to what they should do (sarcasm is thick there). You would think that a simple x-ray would be the first thing you should do and anyone can write that order, but it has to pass through the "team" and "maybe a CT or MRI would be better. . ." is the reasoning we got. Of COURSE, order the $1,500 test first and then get the $28 test last! That took a "team" approach. :-) Again, words here are dripping with thick, gooey sarcasm.
Peter and I are doing well. Our 9th wedding anniversary is coming up on the 3rd of July. Hard to believe we've been married for almost 10 years!!! We've been together for 12 years.
Thats about it for now.
Take Care and God Bless.
Renee
Wednesday, June 05, 2002 at 08:48 AM (CDT)
Hi everyone!
Joshua had his MRI on Monday and it is once again. . .ALL CLEAR!!!! YEAH! There are some minor changes now from the radiation. They told us that radiation will begin to make changes sometime between 3-5 years and continue for upto 10 years, and we are now at the 3 1/2 year mark since radiation. So we just have to keep a close eye on his academics and the such. But the important thing is that there is NO CANCER! He also had his immune studies done again. So far very few of the immune labs are back yet and the ones that are back are the ones we knew would be normal. So I anxiously await the outcome of these latest tests. Joshua also saw the ENT yesterday who confirmed that the tube in his ear is still in place and is clear. Therefore, that is not the reason for his severe ear infections. He did comment that his sinuses on the MRI (I brought a copy of his MRI with me) were all filled again (left more than right) and that we should consider a second surgery to go in and enlarge the openings to allow for better drainage. We will have a CT scan of his sinuses done in a month or so and evaluate where we are at that point. He is also going to have a CT scan of his skull to see if the bones of have completely healed. If they have then he can enroll in peewee wrestling. So we'll do both scans together.
Nettie is doing better since we started using the Mylanta prior to her one meication, but she is still coughing and has nasal stuffiness. This means that though she isn't feeling the discomfort of the reflux because of the Mylanta, she is still having it. So we are waiting for the ID docs and the GI docs to determine which medication can be used safely to control the problem.
Tray is doing wonderful! His appetite has grown each day and now he eats like a horse and his activity level is definately in the normal range!! LOL He We should be hearing very soon (like in a day or two) our court date for the adoption. After MANY bungles and the complete failure of many different people to do their jobs correctly, we are within reaching distance of this adoption being completed. It has just been way to long for this to have gone on, but there is nothing we can do, except push people to to their jobs and pester, pester, pester until we get to the end of the tunnel! LOL
Hope all is well with you and your families.
Take Care and God Bless.
Renee
Friday, May 31, 2002 at 12:50 PM (CDT)
Hi everyone,
Believe it or not, everyone is relatively healthy at the moment. Joshua is now almost 2 weeks into his antibiotic and has made a wonderful recovery! He is able to wear his hearing aids again and has not had to have single breathing treatment in almost a week. We see the oncologist on Monday, and then go and have an MRI (please say a prayer that he continues to be tumor free!), on Tuesday we see the ENT to be sure the tube is still in his ear right, Thursday is our first visit with our new pediatrician. We changed because our old one was just to afraid to do ANYTHING!! He couldn't give antibiotic shots in the office, can't do a coumadin level, wouldn't help with Tray's ng tube,etc. He would just send us to the ER for EVERYTHING! He also felt that Joshua had a normal number of infections! Even a lay person could see what was wrong with that statement!!!
Nettie is having a new problem. She has developed a bad case of reflux in the last couple of months. Today she saw the doctor, who confirmed that she is definately having reflux (her throat is bright red, and she describes the pain and location exactly. The problem is, that all of the medications that treat reflux, interfer with her HIV medications. That would be bad. So they are going to try and work with the GI doc to find something that will give her some relief. Right now all that we have is Mylanta and Tums. But they are short lived. There is also the question as to why the reflux has come back (she had it bad about 7 years ago, but was much better a few years later and hasn't been on any medications since). It is possible she has a hiatal hernia or an H. Pylori infection. So they will be looking into both of those as well.
Tray is doing great! He got some mosquito bites on his back which swelled up enormously! But other than that he is eating wonderfully, and playing full force!! LOL He has his follow up post-surgical appointment on the 12th of June. I think all will be just fine, really I do!
Well, that's all for now. I will give the verdict on the MRI when I get it!
Renee
Saturday, May 25, 2002 at 09:45 PM (CDT)
Hi everyone!
It was a beautiful day today! We spent the entire day fixing up the house outside. The mowing got done, the mulch was spread, the yard was trimmed, etc. etc. It feels so good to see your yard look nice. The kids had a very nice time outside too! They colored with chalk, rode their bikes, went through the sprinkler and made big messes in general! LOL But it was a wonderful spring day.
Joshua seems to have made a turn in the right direction today with his health. Though he continues to have very noisy lungs when you listen to them, he was able to play and keep up today with no problems. He also did not need any nebulizers due to coughing or shortness of breath. This is the first day in almost 2 weeks that that is the case. So it seems that the antibiotic must be finally working a bit.
Nettie and Tray continue to do GREAT!! Tray continues to complain intermittently that his feet or knee hurts, and I know they do, by the way he hobbles. But thankfully, the times are fewer and less severe and can usually be fixed with a nice distraction. The results from his Sickle Cell test confirmed, what we already knew, that he was negative. So there is no real medical explanation right now for the pains.
I had a very nice talk with the school to try and figure out where and when Nettie will go to school. By that I mean, will she continue at the same school she is and move onto 6th grade with her peers, or will she move to our home school (the one Joshua goes too, and Tray will) and repeat 5th grade. See, many people don't understand that a child with mental retardation, no matter how mild, will not be able to graduate with high school diploma, and therefore stay in school until their 21st birthday. But unless you hold back the child throughout their school years, then they end up spending a total of 8 years in high school, instead of the normal 4. I don't want that for Nettie. So my plan was to hold Nettie back for 2 years in elementary school but due to many different circumstances the time was never right. So right now Annette is slated to spend 7 years in High School doing "Community Based" skill training. So I am hoping to change this situation, by either moving her to another school and spend an extra year in elementay school,or by encouraging several of her "special ed" peer's families to consider holding them back in Middle School. AHHHHHH, why do parents have to be the only ones to look into the future of their children!!?? The schools should have been on top of this on thei own. But alas, they weren't. LOL
Take Care and God Bless.
Renee
Monday, May 20, 2002 at 04:41 PM (CDT)
We're still home!! Joshua's infection proved to be sensitive to 3 different oral antibiotics (none of which he has ever really been on with any frequency, so it makes sense). We are now on 21 days of diflucan for the yeast infection and 21 days of Keflex for the Staph infection. Then after this we will try to wait and see how long in between he can hold out on his own without using any antibiotics so we can try and save these meds for future use. He was up 3 hours last night because he was just soooo congested and couldn't breath well. Plan is still the same, review the ears and sinuses and chest in 2 weeks, draw the labs for another full immune workup and have his MRI as planned. I think this may be just what he needs. So for now, all is well in Curkendallville. LOL Like it will last long! :-p
Take Care and God Bless.
Renee
Friday, May 17, 2002 at 04:05 PM (CDT)
Hi everyone!
Well, there have been some interesting developments here on the homefront. After many, many phone calls to Dr.s to find someone to help Joshua's bad ear infection, I finally gave up and took him to the oncologist. I was hoping that maybe we could get an emergency consult from an ID doctor who works in the same clinic.
Well, that is exactly what happened. And then we also saw an ENT who took an emergent culture of the pus in his ear and helped to clear it out a bit. The culture results came back today and it grew Staph Aureus and +3 yeast (indicating a significant overgrowth of yeast). It was discussed on Wednesday whether or not to admit him to address the infection immediately with IV antibiotics. However, the ID doc discouraged that to see what, if anything grew, and then pick the best drug for the bug. However, since he grew a bug that should have been killed many times over with the different antibiotics he has been on, the concern is that he has a multi-drug resistant strain. So we are waiting until Monday afternoon when the sensitivities arse in, telling us exactly which drugs will work against his infection. This way we will only use an antibiotic and anti-yeast medication that will besure to treat the problem. Otherwise we chance causing it to mutate more and making it far more difficult to treat than it already is. So there is a strong possibilty that we will be admitted on Monday evening to start IV meds to address the problem. The docs are also assuming, that since this is what grew in his ear, that it is also what is infecting his sinuses and chest (both of which are also infected). So it is important that we get this thing taking care of right away.
The other news is that with all of this attention to these infections now, they are now wondering why he is SOOOOO sick all the time. So we will rerun all of his immunology studies again on June 3rd when he has his MRI. Here's hoping we find an answer.
Take Care and God Bless.
Renee
Friday, May 10, 2002 at 08:50 AM (CDT)
Hi everyone,
AUUUGHHHH is all I can say about yesterday. I ended up taking Tray to the ER about 4pm yesterday because he had been screaming (and I mean, blood-curdling, frantic, agonizing screaming) for over 2 hours because his feet hurt so bad. I was on the edge of a nervous breakdown and so was he. So off we go, only to arrive and have him look at me and say, they don't hurt any more! AHHHHH. Now don't get me wrong, I am pleased as punch that my baby is no longer in pain, but come-on, 2 hours of torture and no one got to see his suffering. At my request, they did do a cbc with diff and a sed rate. The white count came back very high (23.7 with the norm being 4-17). But his differential (the breakdown of cells that make up the white cells) was not impressive, only a slight shift to the left (the way the numbers breakdown indicate a viral or bacterial cause) so there was no clear cut evidence of any infection. His SED rate (a test that shows systemic inflammation) was only slightly higher than normal, nothing to get worked up about. And since there is no hard copy of the negative sickle cell test, they went ahead and ordered that too, since they were already drawing labs. Though this is a very low possibility (virtually non-exsitent) the doctors wanted it in his chart stating he had been tested, because everyone we see for this pain is going to ask the same question, and I can't produce a document that states what I know is true. So we came home 6 hours later, with absolutely no answers, another bruise on his foot where they drew the blood and and a prescription for Tylenol with Codein #3 (should his pain return). However, he has yet to say anything about his pain today and it is already past 10:00 here. So maybe, just maybe, we cured him by taking him to the ER! LOL
Other than that, all is going well here. That's actually a funny statement if you ever really spent any time here, you would know, that NOTHING is ever going REALLY well here!! LOL
Joshua has his MRI on June 3rd, so some extra prayers his way would be appreciated. We are now past the 4 year mark since diagnosis and I just keeping looking forward to next March when it will be 5 whole years!!!!
Nettie is doing wonderful, though she has gained 16 pounds (she is now 96 lbs at 12 years old!!) in the past 4-5 months, so we had to take her Pediasure away (this was very traumatizing to her). She was a bitter little woman!!! But she has discovered that she likes Sunny Delight so that is what we are substituting the Pediasure with. I guess no more Pediasure Pancakes! LOL And to think that she was failure to thrive is funny. She was the same weight Tray is right now at 3 1/2, at the age of 5 1/2 (32 lbs). She took forever to gain weight and now, she is putting it on like it's going out of style! What a long ways she has come. GO NETTIE!
Take Care and God Bless.
Renee
Wednesday, May 08, 2002 at 07:59 PM (CDT)
Hi everyone!
Well, the Sickle Cell question was answered by Tray's guardian angel (thanks Pam!!!!). So one less thing to have to worry about. The pains are also showing some signs of slowing as his body adjusts to the new blood flow and the increase in coumadin and baby aspirin take effect. His swelling has also improved greatly since putting him back on a second diuretic called aldactone. Hasn't woke up in 2 days with any puffiness at all! YEAH! I'm going to try sending Tray back to school next week for 2 days to recieve some of his therapies. In addition, he really needs a PT eval and the end of the year is coming soon, so I need to be sure he gets a little time in at the school before they close. He only goes for 2.5 hours a day, so I think he should be fine, since he can play 5 hours in one day at the playground already!!! LOL
Joshua was seen at the pulmonologists today to see how the reflux meds are helping with the infections. Well, after analyzing the number of infections, including his new ear and sinus infection today, little seems to have really changed at all. So now we are wondering if these meds are doing anything for him. Though the culture did support the presence of reflux. So he is still on them, but we are also going to try something new. After his normal 5 day course of Azithromax for the ear and sinus infection, we are going to use this antibiotic as a prophylactic medication to try and stave off any additional infections that will require high doses and longer treatments of more powerful antibiotics. He will only take it every other day for the next 5 weeks and then we go back and see the dr. again. In addition, last time he did his PFT's (pulmonary function tests) he showed some mild improvement following the albuteral inhaler. The doctor wanted to see if this was a true response (indicating that his asthma is back again) or was it just a fluke. Well today it was no fluke! There was a huge improvement following the inhaler, so now he is on Xopenex via the nebulizer three times a day whenever ill. When we go back we will repeat the PFT's and see if there is still signs of asthma when he is well and on treatment for infections. VERRRYYYY INNNTTTERREEESSTTINNG!!!!!! He's my stumper child. Nothing he does makes sense when it comes to his health. He gets better when they say he shouldn't and he gets sick when they insisit he can't. Who knows, but I can tell you this, my supposedly healthy child with no immune problems or anything else, is on is on 8 medications daily (Nettie is only on 4 and she has AIDS and Tray is only on 6 and he has. . . to many things to mention) so go figure. At least Dr. Anbar (the pulmonologist) agrees that most of this has to be a result of an insult to his immune system and maybe, just maybe the antibiotic will work. And if it doesn't he is willing to go to bat for us and propose to the immunlogy team that we try the same medication that Nettie gets, IVIG, be given a trial run to see if anything improves. Again, we'll have to wait and see.
*Side note: Our cars were broken into last night and they stole our camcorder and digital camera that I had locked in there in anticipation of Joshua's first little league game. But it started to rain and the game was cancelled and I forgot to go out and get them. All 3 cars - none of which add up in value to the objects stolen LOL - were ransacked. Very very frustrating!!!
Well, that's it for now. I'll have new pictures of Tray during his hospital stay in the next day or two.
Take Care and God Bless.
Renee
Monday, May 06, 2002 at 11:49 AM (CDT)
Hi everyone!
Well, it has been wonderful to be home, but not all of our problems have been solved as we thought they would be. We had a wonderful visit to the cardiologist on Friday and he was very pleased with his heart progress. However, no explaination could be given for the extreme pain episodes Tray has been having. Out of concern that Tray may be having very tiny blood clots in the smallest of his veins and/or arteries, we upped his coumadin considerably and put him back on his baby aspirin. The concern as to wether or not Tray has ever been tested for Sickle Cell Anemia has come up. It seems very strange that a child would have no symptoms of such a disorder until after his third open heart surgery, but the symptoms are consistent with what is seen in the disease and it is important for us to find out. That however, is a difficult task to say the least. He wasn't in the care of the Orange Co. Social Services Dept. until he was 4 days old and had been transferred upstate from NYC where he had been born. In the first 4 days of his life, there was no caregiver in the picture and his other medical problems were of the primary concern. It is now wondered if the results of his newborn screening were ever recieved by anyone caring for Tray following his transfer to the upstate hospital and subsequently placed in foster care. So the search is on for these results. He has also continued to have daily swelling of his eyelids despite the surgery and the use of a diuretic. This is also concerning, as this was one of the symptoms that prompted such an emergent surgery date. It has been happening since before we left the hospital, but noone there seemed concerned. Now that we are more than a week and a half out, there is concern. Go figure. So he had to have some more blood work today to see if there is a metabolic reason for the edema. If not, I hypothosize that they (local docs) will want another cath to see if there is still an occlusion of one of is veins leaving his head area. This is really the only logical explanation. I'm very frustrated with it all. He deserves some down time from all of this doctor stuff!!
Well, I have rambled enough.
Take Care and God Bless.
Renee
Thursday, May 02, 2002 at 01:30 PM (CDT)
Hi everyone!
We are home!! We came home yesterday. Peter drove out to pick us up. Tray had a completely uneventful recovery on the floor and actually could have gone home on Monday if we had lived closer to the hospital. But since we didn't they wanted to just keep an eye on his chest x-rays a bit longer. So Tuesday was a day of play and relaxing. We had a roomate that was also from upstate, and sees doctors at University Hospital also. She is going to have a heart transplant. We are VERY lucky surgery went so well.
Tomorrow we go for a check up here in Syracuse with an echo and a blood test to check on his coumadin level. If all continues well, we will probably be seen in 3 months and then stretch it out to 6 months. YEAH!!
Nettie and Joshua are doing great too!
PS. There are some new pictures up too!
Take Care and God Bless.
Renee
Sunday, April 28, 2002 at 05:55 AM (CDT)
Hi everyone!
Well, in just a few moments we will be moving up to the cardiac floor and out of ICU!!! I won't have access to the computer again, so I just wanted to let you know that ALL is going great so far. He hasn't had his x-ray this morning yet, but he is breathing well and doing great on the little bit of oxygen he is getting. His blood gas numbers are excellent, so we don't think he has anything big going on with his lungs at this time. He has finished 2 cans of pediasure and even ate a couple bites of rice last night. He was switched off of Morphine and put on oxycodone with Tylenol yesterday afternoon and what a difference in the amount of time he is awake! He's crankier now, but wants to sit up and watch Barney, so he's definately doing better. Well, gotta go before they move him without me!
Take Care and God Bless.
Renee
Saturday, April 27, 2002 at 02:06 PM (CDT)
Hi everyone!
Tray continues to do well. He is sitting up more and today he has been able to keep down 5 ounces of Pediasure! He does have one area of his lung that has collapsed, but they just want to wait and see if sitting him up more and getting him to cough will fix the problem. He is getting less and less pain medicine and is now taking tylenol by mouth. He is still sleeping about 20 hours a day, but he is keeping his eyes open for a bit longer each time he wakes up. He does answer yes and no questions and will say a few words every now and then. They removed is chest tube this afternoon (he did NOT like that at all) and we've weaned down the amount of O2 he is using to just a little bit by nasal cannula. So, now we just work on eating, staying awake, coughing, and keeping the lungs from filling with fat (can't really do anything to prevent that :-)) and getting better each day. Tomorrow he will probably go upstairs to the cardiac floor if he continues to do as well as he is. YEAH!! That's it for today thus far!
Take Care and God Bless.
Renee
Friday, April 26, 2002 at 05:59 PM (CDT)
Day 2
You couldn't ask for a better day! Tray's breathing tube came out this morning with no problem. He has been doing great with his heart rate and rythm and is only using a little oxygen to make him comfortable. He is down one IV and they removed the urine catheter and just have him in a diaper. He is off all of the medications that sedate him and he is only on morphine for pain. He still has his chest tube, but that should come out in the morning. The next big step is to see if he develops any "fat" deposits in his lungs after he starts taking in food. This is an area he had problems with last surgery. We are hoping that he will continue on the current path and cruise through that phase too. If he does develop these deposits, called Plureal effusions, then he will have to have tubes placed through his ribs and into the lung and they will use suction to drain the pockets of fat. Then he will be put on a 0 fat diet for a week or two to see if it improves. Hopefully we will not need to go that route.
He is fever free and talking occasionally. YEAH!!!!
Well, that's today's update!
Take Care and God Bless.
Renee
Thursday, April 25, 2002 at 09:48 PM (CDT)
Hi everyone!
Well, he did it!!! He's out and doing well. We had an interesting week, but so far so good.
We arrived in NYC on Monday after a 5 hour bus trip, which by the way, Tray LOVED! We enjoyed a BK happy meal and then some nice down time in the Hotel. On Tuesday we arrived at the hospital right at 8:30 as we had been instructed. After many delays, running around, blood work, ekgs, chest x-rays and finally an echo, we were informed that our admission day had been changed to Wed. NOT Thurs! Ok, Ok, I can deal with cancelling one night at the hotel, missing a whole day of "fun" time with Tray and getting settled into the "nice" cozy hospital room. But then they decided after looking at his echo, that his blood was flowing much to slow to be safe. He had to go off of his blood thinner, coumadin, and that coupled with his heart problems resulted in very slow blood flow, which could have cause clots to form resulting in strokes or even death. Therefore they wanted him to come in so they could start him on a continous Heprin drip to keep his blood thin. So you see, how could I argue with that. 'Cept my stuff is at the Hotel down in Times Sq.!! So Tray and I take the A train back to the hotel, pack everything up, accept the fact that we are going to have to pay for the night since it is already past checkout time and cab back to the hospital where they have a bed waiting for him. Now we were told that they were going to start the Heprin drip at 6:00 am on Wed, but wanted us admitted on Tues, because there was no chance of having a bed open that early in the morning on Wed. Imagine my surprise when, as soon as we arrive on the floor I am told that Tray needs his IV right away, as they feel he needs the Heprin ASAP. So, off to IV land. 6 hours later, at 12:00 am they draw a heprin level from the vein in the top of his foot (only vein they could find, other than the one the IV was in). Back to sleep. Wed. all is well, except he hasn't pooped in 3 days, so we try colace, ummmmm, let's just say, that was a no go. Next Miralax, we were told that this stuff would make him poop out a bus if he had one in him, but noooooooo, not Tray, no poopy for him. Peter had arrived 5 1/2 hours after starting his trip because the traffic on 87 was so bad! So he went back down to the Hotel that we had cancelled out stay at and stayed there! LOL I was so nice to have him come though! So Thursday rolls along, I.m up at 5:30, Peter arrives at 6:00 and surgery starts (2 1/2 hrs late but starts none-the-less) with a belly full of poop. He did VERY well though with the surgery. The famous Dr. Q came out and talked at length with us about what he had to do and answered all of our questions. He had to do 50% of the worst case scenerio. He did have to redo the Fontan and there was an interesting wall of muscle that had grown into the atrium causing even more constriction of the pulmonary veins. But the valve looked great and he didn't have to move any veins!
So, at this point, Tray is still intubated. He is getting dobutamine to help his blood pressure, which has been great the whole time. He did spike a good size fever and has been on Tylenol to help with that. We also bathed him to help cool him down and it seemed to have worked. He is trying to wake up, but the meds are helping him to stay calm. It is hoped he will be extubated by tomorrow!!! He only has one chest tube at this point, 2 IVs, one IV line in his artery in his groin and a urine catheter. All in all, this has been much better than we had anticipated. We were disappointed to learn that he was on the bypass machine for 3-4 hours again, we were hoping for much less this surgery, but he did not do any funny business and is working hard to get better fast.
Well, I'll update more when there is more.
Take care and God Bless.
Renee
Friday, April 12, 2002 at 12:43 PM (CDT)
Hi everyone!
Ok, ok, ok, I am MUCH better today than I was the other day doing the update. Note to self - don't update when depressed!! LOL I had a long conversation with Dr. Fethke (NYC cardiologist) and we do know that this is going to be a long and difficult surgery with many risks involved. However, Tray has been there before and he's still here today. That's all we can think about, we can't change the future. We do know that if this surgery dosn't work the way it is suppose to, he will move to the heart transplant list. This was a difficult decision for Peter and I to consider, but we feel that Tray is doing so well in all other aspects of life, that if we can just get him "heart-healthy" then he has a chance at a long and healthy life, even if that means giving him someone else's heart. But here's hoping that we don't even have to go that avenue for a very long time! I have been making many preperations for this trip and I am feeing stronger and more positive each day. God won't give us more than we can handle. I do know that, and everything happens for a reason. So onwards and upwards!
Take Care and God Bless.
Renee
Wednesday, April 10, 2002 at 03:42 PM (CDT)
We have a date. April 25th. They are concerned. So am I. I am having a hard time with all of this today for some reason. In addition, we attempted to initiate NG tube feeding today, but he threw the tube up, all 3 times we put it in. The last time he really tried not to but it just was to much for him and he gagged it up. (sorry so gross, but he had to go through it not us). I was so disappointed on so many fronts. I was so sad to know I caused my baby so much discomfort, only to have it fail in the end. I am so sad to know that he so very much needs this feeding but he can't get it before this huge surgery. And I am so sad that he has to go through the enourmous, scary, very dangerous operation to be able to live life like we know he can. This is so different from my other 2, because their surgeries were always truly emergency type surgeries (except Nettie's leg surgeries). So there was no "think" time, just reactions and going through the motions. I have been so prepared so many times for this stupid surgery, that so few have ever had to had, that now I am past prepared and right smack in the middle of "what-the-hell-do-I-do-now". Each time we go back to check on his progress they find something else that has fallen apart or gone wrong. So what was supposedly suppose to be just a simple cath procedure in which they would put a little stent in to open up a narrow vein, has turned into a complete redoing of his previous huge surgery, moving veins and replacing valves. Each of these are big surgeries by themselves, but to do all at once is enormous. However, to not correct all of them, will only undo all of the good of fixing the ones they fix. His Fontan is bad because he veins are bad and his valve is bad (again) because his Fontan is bad, so it's a vicious circle that can only be fixed by addressing everything at once. So here we are, again. Waiting for surgery. Knowing he is way to thin to do it, but it's because of his heart that he is way to thin. I am very saddened today, but tomorrow is just around the corner and next week there is no school and me and the kids are going to make the very most of it before their little brother has to leave on the 22nd for NYC. We'll take all of the postive thoughts and vibes you have to send our way. Thanks for listening to my whining! LOL
Take Care and God Bless.
Renee
Saturday, April 06, 2002 at 02:55 PM (CST)
Hi everyone!
(*Note: I will change the pictures more often now. I had lost the software to download pics from my digital camera and had to wait until I found another method of retrieval. So I put up some older ones from last fall and will add more now as we take them! Say Cheese!!)
Well, we haven't heard from the docs in NYC yet, but we now know that Tray needs his surgery sooner than later. I spoke with his local cardiologist yesterday regarding some new issues and the old one, not eating. For the last 3 days Tray has awoken in the morning with signficant swelling of his face. We have now had to up his diuretic called Lasix to 20mg two times a day (up from 15mg twice a day) and had to add another medication called aldacton to prevent the excess loss of potassium from the higher dose of diuretic. He has also all but ceased eating. The cardiologist, who at first felt that there was no cardiac reason for his lack of appetite, now agrees, that Tray is retaining fluid in his intestinal track, making him feel full, even though he hasn't eaten. We are now discussing ng tube feeding him until surgery to fatten him up, verses waiting for surgery and having to worry about losing weight during the recovery period and needing prolonged nutritional support post surgery. Sort of a damned if you do, damned if you don't situation. Still, I'd rather do it before surgery, have him have the weight to lose vs. going into surgery with no extra weight and worrying myself sick while trying to learn all of the new stuff going on.
We are now anticipating that his surgery will be taking place within a month. In actuality that is only one month shy of where his local cardiologist, Dr Byrum, thought he would need it.
Joshua has been batteling a bit of the stomach bug, he vomitted once last night and has had some diarreha, but nothing to bad. He did start some antibiotics for his sinus infection and we have raised his reglan to 3 times a day instead of 2. He also showed some improvements on his PFT's after getting an albuteral treatment, so now he may in fact, have asthma. Just like the allergist thought he did! Oh well.
Nettie also isn't feeling good. As a matter of fact, she has slept all day today, a VERY unusual event! She has cold symptoms so we are hoping that that is all it is. Well, I am suppose to hear from Dr. Byrum some time Monday afternoon with the recommendations of the surgeon in NYC. I'll let you know what he says.
Take care and God Bless.
Renee
Monday, April 01, 2002 at 06:17 PM (CST)
Hi everyone,
Let me start by saying, still no word from the docs in NYC regarding Tray. So I am going on the preface at this point, that no news is good news. Nettie has been doing well and celebrated her First Communion a week ago. She is such a wonderful girl, and I can't believe she is old enough to be taking First Communion (In the Lutheran Church the kids take First Communion in 5th grade). In addition to that big milestone, Nettie just turned 12 years old!!! She has been with us now for just shy of 8 years! She had a very nice party on Sat.. She had 4 good friends go to the movie ET with her and her brothers. Then we all went out to Friendly's for icecream and to open presents. She had a nice time. Easter was hectic but nice. Tray really enjoyed the easter egg hunt, but REALLY enjoyed the candy in his basket the most. The Easter Bunny also brought him a cowboy hat and a fake gold foil wig, which he wore for 4 hours straight (until his head was itching). Nettie was a bit upset because Joshua got a camera in his basket and she really felt the Easter Bunny should've known she would want one of those too. So guess what she got today??? :-) Tray is doing wonderful! He did catch Joshua's cold, but other than a mild runny nose, nothing else has come of it and he recovered in only 3 days. Joshua on the other hand continues to struggle with the severe sinus congestion and fatigue the cold brought with it. He sees the pulmonologist on Wed. so we will see if he treats him for a sinus infection. But overall, he is doing better with this cold than he has with previous ones, so I still think the reflux meds are working. I have a call into the cardiologist to see if they have any input on Tray's case. I'll update you with any info I find out. Till then,
Take Care and God Bless.
Renee
Saturday, March 23, 2002 at 10:10 AM (CST)
Hi everyone!
We have been very busy! No word yet on whether NYC thinks Tray can wait for his surgery. He's doing great right now though! :-) Nettie is also doing very well. She had her IVIG yesterday as well as a pulmonary appointment. Her pft's (pulmonary function tests) look the best they ever have! She spent the night last night with her Girl Scout troop at our local Children's Museum. She was terrified to go, but had a great time and thanked me this morning for making her go. I also redid her braids and that made her very happy. Joshua was up most of the night with a bad case of the croup, head congestion and a fever. He is doing much better today with no fever yet, but the croup is hanging on, which is unusual for him. So we will wait and see.
We have been jinxed in the car areana AGAIN!! All 3 cars were out of comission at one time! This time the head gasket on our new van went, the tie-rod on our other car went and the horn on the third car broke and it was up for inspection and they kept the car until they can fix the horn, which of course will require a special order part. LOL So we rented a small car for the weekend and hopefully will be picking up one of the cars on Monday. The mechanics in this area LOVE having us around! :-)
Well, that is about it for now.
Take care and God Bless.
Renee
Monday, March 11, 2002 at 09:38 AM (CST)
Hi everyone,
Thought I would give you a litte update on the Curkendall Clan here. Well, Tray had his appointment with the local ped. cardiologist. He had another echo and ekg and physical. They concurred with everything NY found and even determined that his mitral valve is leaking a good deal more than it was the last time we saw them. Another sign that the heart is really working with too much fluid. It was also noted that the blood flow through the tunnel (called he Fontan)is moving quite slowly so they had to increase his coumadin to be sure he doesn't develop any clots. However, he also concurred that he LOOKS GREAT and is asymmptomatic at this time. This varies from day to day but nothing to serious since raising his one medicine. So he wants to follow him VERY closely, but that Tray can probably wait another 3 months or so unitl the surgery. The info has all been sent to NYC for them to review and we wait to hear from them and wether they will agree with this remains to be seen. Tray is going back to school starting tomorrow so he can get back into some sort of semblence of normalcy here. Everyone has recovered from their pneumonias and doing well right now.
We even have good news about Joshua! Since starting the Reglan with the Prilosec, he has been completely clear!!!!! That means NO stuffy nose, no coughing or croup and no wheezing! Could all of his illnesses have been caused by an undiagnosed reflux problem??? It seems as though it is at least part of the picture, as he is doing very well right now. He is also sleeping better and not as much. We're keeping our fingers crossed that this is going to only get better from here! LOL
Nettie had her spinal MRI and we will get the results next month. She is still having stomach aches regularly so we aren't sure what that is all about, but for the most part, she is doing great.
Well, that is it for about now!
Take Care and God Bless.
Renee
Wednesday, February 27, 2002 at 03:59 PM (CST)
Hi everyone!!
You will never believe it! Tray will probably NOT have his surgery as planned on the 8th because he now also has PNEUMONIA! Now both Joshua and Tray are walking around hacking and Tray has been vomitting. Since he got this pneumonia while on Augmentin, it is most likely a result of the flu virus and we will just have to ride it out. Joshua has not made significant improvement in the past week, except that his fever has not returned, so there is no reason to think that Tray's little body will do much better in fighting this. In addition, Nettie has begun coughing too and has needed extra neb treatments, so I am sure she will be next. Hopefully her IVIG will protect her more than the boys had.
Joshua had his follow-up with the pulmonologist and he is Cystic Fibrosis NEGATIVE, but. . . he is a chronic pseudomonas carrier. It makes no sense to the Doctor, and if this next throat culture comes out positive, then we will do 1 month of inhaled Tobramycin to try and eradict the bug. In addition, he was started on Reglan today to try and complement the Prilosec and continue to reduce the number of ear and sinus infections. So we wait and see again as too what we will find! :-)
Over all we are managing, just frustrated by the lack of answers for Joshua and the possibility of not going to surgery again!! Share more as it unfolds!
Take Care and God Bless.
Renee
Saturday February 23, 2002 12:40 AM CST
Hi everyone,
Well, I spoke to soon regarding Joshua. It seemed as though he was doing well, but on Friday (3 days after his fever started) he developed the shaking chills and his temp broke through the Motrin to 103 under his arm. So off to the doctor, then to the hospital for labs and an x-ray. He has a definant pneumonia, second in 2 months, and we are waiting on the blood culture. He also has pink eye, so we are now on eye drops, antibiotics, xopenex(medicine used in a nebulizer to open the airway), Motrin and Tylenol. He woke up today fever free for the first time in 4 days, and his eyes are already lookig better. As long as he dosen't play to hard he does ok. So now I am more interested than ever as to what the pulmonologist will say about 2 pneumonias in just 2 months time. The good news is. . .NO EAR INFECTION! Never a dull moment!!!
Tray and Nettie on the other hand are doing great! Nettie's IVIG will protect her and Tray is now on a prophylactic antibiotic again to try and keep him healthy. Only a week and a half till surgery!! Yeah, I am happy to be getting this over with!
Take Care and God Bless.
Renee
Thursday February 21, 2002 10:17 AM CST
Hi everyone,
Hope this finds you all well. Tray is doing much better since the last update. I increased his one medicine, Captopril and he started eating within 12 hours of the increase. He is no longer taking any pediasure and has maintained his weight without it. We are keeping our fingers crossed that he doesn't get sick, as our community is in the midst of many, many different viral infections right now. RSV is still going around, the stomach bug is all over the place and a virus that causes a high fever and nasal congestion has run rampant through Joshua's school. Speaking of Joshua, he is now in his second day of a bad croup and fever. He seems to be doing much better today than yesterday and just praying that if Tray is going to get it, he gets it soon so he is fully recovered in 2 weeks!! I have my meeting with the pulmonologist regarding Joshua's lab work and DNA work-up for Cystic Fibrosis next week. Though I am sure he doesn't have it, I will be very relieved to hear it in person, straight from the doctor's mouth. However, if the results are negative, he is going to push for more work-up to identify the immune problem that must exist to result in a positive pseudomonas culture. As usual, we'll have to wait and see! LOL
Nettie got her IVIG yesterday with no problems and is as healthy as a horse because of the stuff. Sure wish I could give a bit of it to Joshua to see if it work such wonders for him! Peter has determined that he is "allergic" to Amoxicillin. He has been Augmentin for 8 days and has progressively felt worse and worse each day. Nausea, achiness, even some vomitting. He even stayed home for 1 1/2 days as a result of the feelings he was having, we determined that the medicine, though working great on his sinus infection, was the culprit and since discontinuing it he feels great! I am doing just fine except for getting a bit stir crazy keeping Tray away from crowds and not being able to go to work! Otherwise, all is well for me.
That's about it for now.
Take Care and God Bless.
Renee
Wednesday February 13, 2002 8:32 AM CST
Hi everyone,
Well, we have our date, March 8th. I know, it is so far away. We feel the same way, but they insist that there are no other openings before then. I have been muched more worried about Tray than I have been before. He is now no longer really eating anything. He takes 2-3 cans of Pediasure daily, but he isn't really hungery for anything. He is also now taking 2-3 hours naps and sleeping through the whole night. He fatigues sooner than he used to and really huffs and puffs after strenuous activity. I let the cardiologist in NYC know all of this and that I want to bring him in for an echo, ekg and to be checked over. He has no "basic" medical concerns, as he was just seen by the pediatrician and he gastroentorologist. Both felt that everything was cardiac related and I am of the same thinking.
Nettie had a sinus infection but one round of Zithromax and she is well on the way to full recovery. She is doing great in all other areas.
Joshua still hasn't needed to see a doctor! He has horrible breath, classic sign of sinus infection, but he has NO other symptoms, so we are sitting tight. I really think that the Priolosec is doing a really good job. He must have had severe reflux to cause so many URI and ear infections all these years!! Go figure.
Well,I'll talk more later.
Take Care and God Bless.
Renee
Wednesday February 6, 2002 10:30 AM CST
Hi everyone,
Well, we have made a tremendous step in the right direction. Tray was medically cleared for surgery. The Ped GI doctor, as well as his pediatrician both agree that his liver problems are related to his heart problems. So we are just waiting for Dr. Q's (the cardiac surgeon) office to call with the new date. Tray is feeling great and despite having more blood taken yesterday as well as an ultrasound of his liver and seeing 2 doctors in one day, he made it through the ordeal laughig (most of the time).
Joshua has done great this past 2 weeks since the start of his Prilosec for reflux. I really didn't think it would work, but lo and behold, he has been croup free for over 2 weeks now! He is still very tired for a child his age, but at least he hasn't needed to go to the doctor's for any antibiotic in 2 1/2 weeks, working on a record here people! LOL
Nettie had an appt. with her rehab doctor. They still are not happy with the way she is walking with her legs completly straight (she always has, so we don't even really notice anymore). So she is going to be enrolled in a study that will force her to do intense repetative movements to retrain her muscles and brain to use a new gait pattern, as oppose to the one she has used for the last 5 years. She didn't even sit on her own until she was 4 year old, and didn't stand up without braces locking her legs staight until she was 5 1/2ys old. She took her first real steps with the walker when she was 6 and hasn't looked back since. She still can't stand independently, nor walk without a assistance (ie. walker, hands, wall,etc). But she sure gets around fast enough!! LOL I would love to see her walk more normally, and it will facilitate the muscles she needs to walk on her own, or at least without a walker, maybe a cane or a forearm crutch. In addition, instead of doing the scoliosis jacket (which she is completely against). They want to do TENS on her back, shoulders and stomach to work her muscles that control the scoliosis. She would only do it at night and would wear a small fanny pack around her waist with the machine. The electrode pads will go on her stomach and back in specific places and work by impulse to contract them over over throughout the night. (Sort of like the stuff on tv, but not as strong). Nettie already uses a machine like this, but with a variable impulse control to work on her leg muscles. Since starting this machine,she can now lift her foot upwards and push it down. She can also pull her knee towards her bottom (when sitting in a chair) and flex it upwards. She has had all of the muscles in her legs cut and/or lengthened so some were not working at all, and some were just to weak. She is such a miracle!
Well, that is it for now. I will update you on the date, as soon as I know.
Take Care and God Bless.
Renee
Tuesday January 29, 2002 9:22 AM CST
Hithere,
Forgive any typos, as my key board is petering out on me.
Wanted to let you know that the new tentative date for Trayvon's surgery is 2/7/02. His cold is improving, though his nose is not. We are hoping that with the removal from school and daycare, along with the antibiotics and some extra love and care, he will be 100% well and can go on to have this surgery and get back to living life without it hanging over our heads.
Joshua had a multitude of stuff done on Monday. He had sweat test for Cystic Fibrosis, it was negative. He also had A LOT of blood taken to check for mild versions of CF that don't show up with the sweat test. In addition his stool is being looked at closely for any traces of unusual stuff (glad I don't have that job!!)He had a throat culture done 6 weeks ago that grew out pseudomonas which is very unusual for healthy immune systems. It is very common in the Cystic Fibrosis pop. thus the reason for all of the testing. However they repeated it on Fri. and it came back neg. so I don't know what it all means.
Nettie continues to do FANTASTIC!
I'll update you more soon
Take care and God Bless.
Renee
Tuesday January 22, 2002 8:35 AM CST
Hi everyone,
I almost hate to say, but the surgery has been post-poned again. Monday morning Tray woke up with the start of a bad cold. I had to make a desicion as to whether or not to cancel the surgery. It was such a hard decision to make not knowing if the runny nose was actually going to get worse or not. But I know Tray, I know winter colds and they never go away in one day. So by 10:30 am yesterday, I had called everyone that needed to be called and cancelled the surgery. I am so glad I did, because today he is MUCH sicker and will be going to the pediatrician this afternoon. He has a very bad cough and a terrible nose. I am pretty sure that he has an ear infection too, as he keeps saying "HUH?" and is pressing that ear with his hand. So it was the right decision. It is the plan to try and re-schedule the surgery in 2 more weeks for the 6th of Feb. but, I haven't actually spoke with the surgeon's office yet, that was just the cardiologists plan. I will also be speaking to the local ped. cardiac surgeon to see if there is any way he can possibly do this surgery at Strong Memorial Children's Hospital in Rochester, NY. He works here too, but I think we have a better shot of getting onto the surgery schedule in Rocester, as he only works here in Syracuse 2 days a week.
I'll keep you updated on this never ending saga of Tray and his surgery!! LOL
Joshua has been suffering again from a sinus infection. The problem is, he is already on an antibiotic, has been for over 20 days. He was also wheezing again this morning. He has his sweat test and appointment with the pulmonologist this Friday, so now I get to go to that appointment with him. I will also get to go to Annette's sleep test on the 29th. Peter wasn't to happy about having to leave Joshua at his sister's house and then going to sleep with Annette down in the city from 9:15pm to 6:30 am while she has her sleep test. We are looking to see if she has any sleep apnea or breathing irregularities. She has always had a very strange noise and snoring sound when she sleeps and is frequently very tired when she wakes up, even after a very long nights sleep. I don't think they will find anything, but hey, it is painless, and it may just find something interesting.
Well, that is it for now.
I will let you know the date of the surgery as soon as I know.
Take Care and God Bless.
Renee
Saturday January 19, 2002 4:50 PM CST
Hi everyone!
Well, the verdict is in, surgery is a go ahead... ifffff the labs drawn in NYC on Tuesday are the same or better. There is still no reason to be found for his elevated labs, and yes, they are still very high. But, everyone is now thinking that this is just Tray and these numbers may never get any lower, nor may there ever be a real reason for them to be up.
So, I am flying down Tuesday morning, going straight to the lab to have the blood drawn, they are going to do them STAT so that I have the results within in an hour, then I will call Peter to let him know if the surgery is still on or if we are coming home. If it is a go ahead, then he will leave work early on Tues. and drive down and meet Tray and I at the hotel. Surgery is scheduled for Wednesday at 6:30 am. I am ready for it. Last posting I stated that I needed to clean my house, well, I am so pleased to announce that my house is, in fact, clean! Even the rugs got shampooed and the refridgerator was cleaned. To bad it takes a major surgery hanging over my head to make me do this. LOL!!
I will update as soon as I can. As always, prayers are welcome and may even be needed if they go for the big surgery they have been talking about.
A thank you also to everyone at CablExpress who made this trip so much more tolerable with their kindness and generosity! You are an incredible group of people and I am honored that Peter works with you and calls you his friends. Thank you from the kids, Peter and myself.
Take Care and God Bless.
Renee
Monday, January 07, 2002 at 08:39 PM (CST)
Hi everyone!
Well, surgery is off for a while. It has been rescheduled for the 22nd of Jan.. Tray's liver enzymes, instead of going down like they should have, went up even more. They are concerned that he may have one of the following: a viral hepatitis, contracted via a blood transfusion, an unknown systemic viral infection (which should clear as quickly as it came), or this is an indication of a significant cardiac problem (though he has no real physical symptoms of this). None of his other blood work indicates strongly one way or the other. So we will run a hepatitis panel(this will check for all of the different types of hepatitis you can have) and then repeat the lab results again in a week to see if anything is improving. Please say a little prayer that nothing serious is wrong and this is just a wrinkle in the plan.
Outside of this little scheduling conflict, all is well here. Just thought I would update you on the ongoings.
Take Care and God Bless.
Renee
Saturday, January 05, 2002 at 07:48 AM (CST)
Hi everyone,
Well, the saga with Tray continues. On Thursday we had his pre-testing lab work done here in Syracuse. As usual we had a bit of a surprise. Apparently his liver enzymes are sky high and unless the doctor sees them coming downwards fast, surgery is cancled and he will need an immediate referral to a liver specialist. Why am I not suprised at this development??!! We are re-drawing the labs on Monday to see if the numbers are going down and wether it is worth it for us to go to NY for the rest of the pre-testing on Wednesday.
Joshua also woke up yesterday with another horrible ear infection. Off to the doctor's, more ear drops, and oral antibiotics. In addition, the Dr. cultured the pus coming out of his ear and had it sent to the lab to see what is growing this time. Dr. Vargas, did agree to keep Joshua on a strong antibiotic while I am away in NYC with Tray to try and reduce the chances of him becoming sick while I am away. We were also able to secure nursing for 2 hours a day for Joshua so that Nettie's nurse will be able to legally give Joshua's meds and assess him for any illnesses each morning and afternoon. Thank goodness for Joanne.
Well, that is about it, I'll update more when I know how things are swinging here.
Take Care and God Bless.
Renee
Tuesday, January 01, 2002 at 02:46 PM (CST)
Happy New Year to everyone!!!!!! We wish all close and far, a very happy and healthy start to the new year. It is hard to believe all that has happened in our lives, our country and the world in the last 12 months. We finally have the first real snow of the winter and it looks beautiful. I'll take it as a good omen. :-)
We are making our plans for Tray's upcoming surgery on the 10th. He is doing so well right now, it is hard to believe that he really needs to be cut open and subjected this surgery. But I know in my heart as well as medically it is the right road to travel at this time.
I just finished braiding Annette's hair again. Boy it is a strain on my back. But I did the big braids this time and it only took 5 hours instead of the 12 it took last time. But the last braids lasted almost 3 months!! I never got that long of wear out of the professionally done ones! hahahaha At least now all she has to do is pull it up into a pony tail and she'll look good. Her hair is sooooooo course and kinky that it is very difficult for anyone to do it who doesn't have a lot of experience with black hair. That counts out everyone in our family and her nurses. LOL So I just braid it and then there is no concern as to what they need to do with it.
Joshua and Nettie both recovered from their chest colds. Joshua still has VERY bad breath, a strong sign that his sinus infection is still very much there, but it isn't bothering him, so we'll hang out and see what happens. Nettie never did need an anitbiotic, boy is she ever doing great on her IVIG! Tray never did get the chest cold, just a runny nose and some nasal congestion that cleared up on it's own.
We are going to take the tree down right now. Need to get this house into shape before next week!!!! I don't think I could do it in a year let alone a couple of days! We'll do the best we can. I always seem to go into nesting mode whenever a big sugery or hospitalization is on the horizon. Guess in some ways it's good the kids have these surgeries or hospital stays, it's the only way the closets, drawers and cubby spaces get cleaned! LOL
Well, gotta go and get started on this cleaning spree that is so very much needed.
Take care and God Bless.
Renee
Saturday, December 22, 2001 at 08:30 PM (CST)
Hi everyone,
Well, the news is. . .January 10th is Tray's big surgery day. He is going to have a vein relocated, and there is a very strong possibility that they will redo the wall that they built, called a baffel. This baffel is working well for the most part, but it has those 2 devices in it and there remains a very small hole that shouldn't be there. Since they will already have him in the OR and opened up, the surgeon feels that the best option to try and prevent any MORE surgeries, EVER will be to make everything as perfect as possible while he is strong and healthy. I can see the pros and cons of this thinking, but will talk more in depth with the surgeon when we go down. He's been started back on Pediasure, because he is losing weight, probably because he is not prefusing well. In addition he is on lasix 2x daily, but has needed several prn doses to help with the fluid build up.
Both Annette and Joshua now have an respitory thing going on. Joshua is on 4 times a day nebulizers and another antibiotic for sinusitis and bronchitis. Annette is back on the nebulizer every 6 hrs too, and seems to be holding her own for now without the antibiotics. Peter continues to fight the same thing, he's been down with this bug for over 3 weeks now!! It's a tough bugger to get rid of, here's hoping Trayvon can stay clear of it for now! I, on the other hand, feel fine. :-) Tired from taking care of everything and everyone, but NOT sick!!! HAHAHAHAHAH I am getting very excited about Christmas and looking forward to Tray's first Christmas with us.
Well, that's it for now.
Take Care and God Bless.
Renee
PS. I inadvertently became a Discovery Toy consultant when I ordered my kids the "Intro" pack for Christma. I did not know that the "Intro" pack was what new consultants use to do shows. Well, I don't do shows and I don't sell door to door or phone to phone. But, if you see anything you like on the Discovery Toys web site, I can order it for you! :-) Apparently you need to order from a human and can't do it online, so I would be happy to do that for you.
Well, that's it again.
Take Care and God Bless.
Renee
Wednesday, December 12, 2001 at 07:11 PM (CST)
Hi everyone,
Well, I had a wonderfully beautiful and detailed report all typed up, but I leaned over to blow Tray's nose and somehow managed to erase the ENTIRE update!! So here is a very abbreviated one.
Tray and I are home. He did have the catheterization, but it was determined that the problems were not amenable to repair in the cath lab. Therefore he will have to go back sometime soon for OPEN-heart surgery. Though we had orginally been told that the repair could be done through the sternum but with a closed-heart procedure, it now seems that that is not the case. We are very, very upset that all of this is happening! But we're rolling with the punches. (It seems that Tray is building up much to much scar tissue over the small devices he had placed in his heart to seal up some holes. This scare tissue is becoming obstructive to the tiny veins entering his heart from his lungs, thus the increased respitory symptoms he has had.) He seems very well, with the exception of the constant running nose and a chronic cough. The increased lasix definately helps.
The cath team will meet next Tues. and inform us of their decision as to when they think the surgery should take place. Please pray that they say "after" Christmas!! Even if it is the day after I wouldn't mind. :-) As long as we spend our first Christmas as a family here.
So that is it for now!!
Share more later.
Take Care and God Bless.
Renee
Thursday, November 29, 2001 at 08:34 AM (CST)
Hi Everyone!!
Well, I thought I would add a little update here. Joshua had his MRI on Monday without a hitch and even went to school afterwards (begrudgingly)! ALL IS CLEAR!!!!!!! He now goes to every 6 months for one year and then onto once a year!!! Can you believe it? I can't! It is so hard to believe that just 3 short years ago, we were fighting the fight of our lives and now we are closer and closer to saying good-bye to cancer forever (as child anyways). Thank you God.
I must say though that the same goes for Annette too. It seems like such a distant memory that she was as sick as she was in NYC. We havent' been hospialized (except for surgeries) in over a 18 months! And she hasn't had a blood infection now for over 5 years!!! She went to being critically ill every 2 weeks, to not getting sick at all for almost 2 years! Kids, you'll never figure them out. LOL Again, Thank you God.
Hope all is well with you out there. The weather here has been wonderful!! Haven't hit 30 degrees in more than a week, and no snow in site, although there is a lot of rain right now.
The kids are holding their own. Nettie had her IVIG yesterday and it went off without a hitch. She has to go back the day after Christmas for her next dose and they are going to be doing a pharmokinetic study that day too. She is on an experimental drug and they need to monitor the way her body metabolizes the medication. They will put in an additional IV in the other arm and draw blood repeatedly over the course of 12 hours. Sounds like a party to me!! LOL Shouldn't be bad, other than getting the IV's she should have no discomfort, just inconvienced. And it is only one time. Since being on the new meds, her t-cells made a nice jump and the amount of HIV in her blood continued to be undetectable. So that was great news.
Joshua continues to struggle with severe sinus congestion and he had another bad ear infection only 8 days after having the new tube put in. But the oral antibiotic cleared it right up and there is hardly any drainage at all right now. It was running right down his cheek before!! Gross. He saw the pulmonologist this week. He strongly feels that he doesn't have asthma and most of his respitory issues are sinus related. He is going to do a sweat test to rule out Cystic Fibrosis, but we all feel that this is not the problem. However, he needs to rule out things as we go along. There is also the possibility that he is having reflux when he is sleeping, and this is resulting in the chronic croup, night time coughing, and sinus infections. We are going to try some medications with him to see if there are any improvements, before putting him through the ph probe. Reflux doesn't explain the cellulitis, high temperatures and other problems he has had in the recent past, but it does lend some explaination to the other symptoms. He has his last 4 month MRI on Monday, they will go to 6 months for a year and then onto only 1 time a year!!! It's hard to believe that he will be coming into his fourth year since diagnosis in just a couple of months!!! YEAH! So say a little prayer that all goes well with this MRI, but I have no fears as he is acting just fine.
Tray has been having some difficulty. He is much more out of breath than he was before whenever he runs around. We have upped his lasix to 2 times a day again. So far it hasn't made a huge improvement. His catheterization has been set for the 11th of Dec. and if surgery is needed it will be done on the 12th. He has also been having some strange stools. They are VERY green (like he ate a green crayon, but I know he hasn't and it has been going on for a while now) and has a lot of mucous with them. I'm a bit concerned and will call the cardiologist today. His appetite is ok, no major changes there and he has been gaining weight slowly, so I don't think there is anything to major to worry about, but still, it's strange. I don't like hearing him pant as he runs around the house and he is just exhausted each night. He sleeps straight through without even waking up for a drink or to go to the bathroom anymore. So the catheterization will be a good thing.
Well, that is about it. Nettie and I are off to see my mother and do some Christmas shopping near Albany this weekend.
Take Care and God Bless.
Renee
Monday, November 19, 2001 at 08:26 AM (CST)
Hi everyone,
Well, we have a date for Tray's cardiac catheterization. It will be done on Dec. 11th at Babies and Childrens Hospital in NYC. If they are unable to correct the problem in the catheterization, he is going to go right to surgery the next day to have every thing done. It was much to difficult for us, as a family, to wait until the new year and then to split the process up into 2 different trips. So we went ahead and scheduled it for before Christmas. It is our hope that we planned early enough, so that even if there are some complications that keep us in the hospital for a bit, we will be home before Christmas. But there won't be any complications, now will there!!!!
Joshua had his left ear fixed in surgery on Friday. He had the old tube removed and a new one put in. It is hoped that his ear problems will improve from this point on!! His sinus' are a mess right now and he woke up this morning with the croup again, but he went to school. I hope that he is able to stay, I have a ton of Thanksgiving shopping to do!!
We are having a quieter Thanksgiving this year. Peter's mom and dad, and my dad as well as Peter's sister and daughter will be coming. This is by far the fewest people that we have ever had!! Hopefully there will be a bit of turkey left over this year for me!
Well, that's about it.
Take Care and God Bless.
Renee
Thursday, November 08, 2001 at 10:57 AM (CST)
Hi everyone,
11-11-01
Update: I had forgotten completly to acknowlegde Trayvon's birthday in my first update!!! What a shmuck I am! Tray turned 3 years old on Wed. November, 7 2001. We had his birthday party yesterday, and though the whole thing was a bit overwhelming for him, he really enjoyed himself! Just thought I should be sure to make a point to let everyone know about this little milestone I neglected! Bad mommy, bad mommy!!
11-8-01
Well, I'm sitting in our hotel in NJ, after finishing the last of our doctor appointments. Though a little stressed, the boys did great. On Wed. we saw the cardiologist Babies and Children's Hospital. He had an echo and ekg. We had a suprise with his echo. Apparently the subtle increase in his breathing and the occasional need for an extra dose of lasix can be explained by some changes in his pulmonary veins. Apparently one of the veins leading from from his head emptys right next to the artificial tunnel they made to make the blood flow around his heart and go to his lungs instead. On you and I these veins all open more to the left of the heart, but with Tray, they are scattered sort of randomly, with the one right next to the tunnel (called the Fontan). There is also a small flap of tissue right on the other side of where this vein opens that would have been the divider between his heart, but it never finished. The blood coming into this little narrow space is under a great deal of pressure. The normal range for pressures involving veins is under 3, Tray's is 18 right now, and that was while he was quiet and not active, so it will be higher when he is moving around. This blood is coming straight from his lungs and if the blood is to hard to push through than it can either back up into the lungs or make the lungs work much harder to get the blood through. So in Jan. we have to come back to the hospital and have a heart catheterization to see what can be done. They may be able to fix everything right during the catheterization, however, if they can't then that will mean a big open chest operation. The good news is, he won't need open "heart" surgery, but he will have to have his chest opened to see the heart. So we are REALLY hoping that they will be able to fix everything during the catheterization. That wil mean a 2-3 day hospital stay, but the other surgery will probably mean a 5-10 day stay. The GREAT news is, that Tray's heart function itself is improving dramatically. Dr. Fethke feels at this point we are free and clear of needing a transplant ever!!!!!! We just need to "tweek" his previous surgery a little and he should be good to go for a VERY long time!
We saw the neurologist today. Tray was seen just as a consult, no real issues seen. His head circumfrence has gotten very small. It is now only in the 1st%. It use to be at the 5th% just 6 months ago. But he has really grown a lot and there for there is a bigger discrepency. But Dr. Cargan was very pleased with his progress and has "high expectations for Tray", so it would appear that though his head is small, his brain is very powerful! :-) Joshua has also made very good progress in this area. We are going to try and wean him off of the Neurontin next month. It seems that he no longer has "neuropathy" but instead has developed OCD as a result of his surgery to the frontal lobe. OCD stands for Obsessive Compulsive Disorder. This is a very common side effect from the type of surgery that Joshua had to remove his tumor. It would explain why Joshua has such difficulty with getting his sneakers just right, or why he can't spill ANY water on his clothes or wear certain types of clothes. We just to work with it for now. There are medications that can be used, but Dr. Cargan, Peter and I all agree, that there is no reason for that right now, because the OCD dosen't really affect his quality of life. If and when it does, Joshua will help to make the decision as to wether or not he wants to take a medication to help him. I was thrilled to hear Dr. Cargan say that he doesn't need to see Joshua for another YEAR!!!!!
So, now Annette is all done seeing the doctors here in NY, Joshua only comes to see Dr. Cargan once a year, and the one time immunology consult. If we can get Tray all set, then we will only be coming once a year instead of our 3-4 times like we have been doing!!! YEAH!
Despite the fact that Trayvon will need some more surgery, I feel that this was a very good visit.
Once both of the boys are done with their naps, I am taking them to see the Monster, Inc. movie again (we took them last weekend and both of them fell asleep in the first 5 minuets, that is why I MADE them take a nap this time). And them home tomorrow.
Take care and God Bless.
Renee
Monday, October 29, 2001 at 09:21 AM (CST)
Hi everyone!
Well, we made it through our first surgical procedure with Trayvon. It was an unpleasant experience, though no surgery is ever really pleasant is it? He had to have a complete hypospadius repair AGAIN, instead of the much easier procedure of just repairing what we thought was just an extra "hole". He had another "new" urethra created and divereted to the correct position at the tip of his "bug". He came home with a catheter in place (it was actually a feeding tube), I was instructed to open the catheter every 1-2 hours to empty his bladder. Well, the hospital staff did an AWFUL job getting him any pain medication and he screamed every time his bladder was emptied. After he was discharged home the next morning, I went to release the catheter and he started shaking like a leaf and screaming like someone was killing him!!! In addition there was blood in his urine and I was in a panic as to what was going wrong. But after conferring with the dr office, I was told he was having bladder spasms and to just leave the catheter in the open position and put a diaper on to catch the urine, HUGE relief after the initial agony of emptying his bladder. He had the tube out on Friday and other than pain after urination he is much, much better. Things are still VERY swollen down there and he is very cautious about his "bug", but everything is coming out only ONE hole and in the right spot!!! So I think it was a success in that aspect.
Joshua is doing much better too after another horrific ear infection. We have moved his ear surgery up to the 2nd of November hopefully! The ENT gave him a new antibiotic called Augmentin 600 (a super strong antibiotic) and gave him an adult dose, what a difference!!!! Within 3 days he was doing wonderful, even his sinus infection has improved tremendously! I have made an appointment with a very good and world renowned immunologist down in NYC at Mt. Sinai hospital. I am hoping that she can take a better look into his immune system. Several people I have consulted with are sure there is something that we are missing and need to find it to prevent any real serious infections from taking hold. So off to New York again in Dec. for this appointment. I take Tray and Joshua next week for their neurology and cardiology appointments. I think Tray's cardiologist is going to be pleasantly suprised at the size of his patient!
Nettie continues to do wonderful! She will be evaluated for her scoliosis in Dec. again, to see if the jacket is needed. We are also changing ALL of her HIV meds this week. I am a nervous wreck about changing them but really needed to due to the amount of diarehha she has been having. It is a very unpleasant experience to have loose stools ALL the time! So here's hoping that not only will that improve, but so will her lipodystrophy (the hump on her back) because we are taking away all of the drugs that are most notorious for causing this! Yeah!!
Well, that is it for now!
Take Care and God Bless.
Renee
Friday, October 19, 2001 at 11:03 AM (CDT)
Hi everyone!
It's been a while since the last depressing update! :-( We have since replaced the van that I crashed. We now have a '95 Ford Windstar. Not nearly has elegant as our last van, but it is nice looking and much better than not having one at all!!
As for the kids, Joshua once again has been struggling with multiple illnesses. The poor little guy just hasn't really caught a break in that area for some time now. He had another episode of the bad body rash "contact dermatitis". He needed steriods again to get it under control. He has also had a really bad time with his left ear. It is very infected again and we are on our second oral antibiotic and ear drops. The last time (3 weeks ago) he had to go to the ENT to have the pus removed with the suction catheter. It was determined then that he needed to have a new tube put in. He is scheduled for the 16th of Nov.. But I think that we will have to go back to the ENT sooner than that, to have the ear cleaned out again. He has been picked up from school for the last 3 days in a row, due to not feeling well.
Nettie woke up the morning with the same cold that Joshua has. She is such a ham though that you would think she had been inflicted with the ebola virus the way she acts! LOl Nettie has also made the transition from my baby to my "little" lady now. She got her period this week. Suprisingly, she handled it just fine and has even managed to learn to care for her own personal needs already!!! What does she even need me for anymore???!!!
Tray is having his surgery this coming Wendsday to fix his extra hole in his penis, as well as put in some ear tubes for him too. We hope this works, as the urologist doesn't know if he can close it. Please say a prayer that it will happen!!
Well, that is all for now!
Take Care and God Bless.
Renee
Tuesday, September 18, 2001 at 05:07 PM (CDT)
Hi there!
Well, it has been a difficult day here. I was in an accident and the van we had worked so hard for, our "wheelchair" van, was totaled. I was the only one in the car and I am fine, a little banged up, but fine. It was a chain reaction crash and I was the last one in the chain of three cars. The worst part of it all, was that the person who caused the whole thing, was not even cited, because he was not hit. Apparently a guy in a white mercades came along the right side of our line of traffic, swerved into the left lane and took a sharp left hand turn into a driveway. Apparently, no turn signal or anything. But there were no eye-witnesses to this, I didn't see it, I was 3 cars away. All I saw was a truck that was moving come to a screeching halt and then bam! The truck I hit actually was following to closely too, which I won't deny, I probably was, but took a chance and turned into the north bound lane to avoid hitting the car in front of him, therefore he cleared the way for me to hit her, as well as clip his bumper, making it look like it was all my fault. So I was ticketed. To make matters worse, I was ticketed for no insurance, even though I had my cards and they were current. I called the insurance co. and they said they did not know why the DMV had me listed as un-insured. They have already faxed a statement clearing me of this offense. But it was just that much more traumatic to be given this ticket too!
Ok, I am done whining now. The kids are all doing great!! Nettie has been to the orthotist and her new foot braces and the new lift on her sneakers should be in any day now. We really are looking into the "soft-body" jacket for her scoliosis. I'll hear back on this soon. Joshua and Tray are doing very well. Tray's surgery has been re-scheduled for late October in which both procedures will be done at the same time. This is much better for Tray and myself!!!
:-)
As you know, I was suppose to go to NYC with the boys last Wed.. For obvious and sad, sad reasons, we did not go. My heart broke that day, as I watched my beautiful city crumble like that and I felt so very, very vulnerable. Though we lived in the Bronx, and only for 6 years, I feel as though I really belong in NYC and have always been very proud of my time living in NY. Now, I am more proud than ever and have been flying my flag high. I hope that all others reading this are also flying their flags high and proud too!!!!!
My sympathies to all those tragically affected by this horrendous act and prayers to those still waiting and praying for their loved ones to come home.
Take Care and God Bless America.
Renee
Thursday, September 06, 2001 at 10:47 AM (CDT)
Hi everyone!
Just sitting here waiting for Tray's bus to get here. Today was Tray's first day of "regular" school. He went to summer school for 6 weeks at the local preschool, but I now have him enrolled in the same preschool Joshua went to. I love this preschool and hope that Tray will do as well as Joshua did.
The other two are also off to school and seem to really be enjoying it so far. Joshua is in a "looped" class. This is were the teacher loops from kindergarten up to 1st grade with the same students in the same class. So for him, this is the same as last year, but with a few more rules and more homework! LOL Nettie has started 5th grade (hard to believe my baby is in 5th grade!!!). She seems to like it so far. She missed the first half of the first day due to an orthopedic follow-up appointment. Where it was discovered that she now has a 22 degree spinal curve (scoliosis). She will have x-rays taken again in 3 months to see the progression and then decide if she needs to wear a scolosis back brace. I am so hope it doesn't come to that, but the reality is she has one leg 2 inches shorter than the other, therefore the odds of it staying the same or getting better seem pretty slim. We have calles into the therapist and orthotist to have another look at her foot braces. I am also looking into a "soft-body" brace to wear now BEFORE she gets to sever and has to wear the hard plastic shell. Maybe we can prevent any further problems with a little forsight.
Yesterday she missed the second half of the second day due to her IVIG infusion. Which went great and had no problems at all. We are changing one of her HIV medications though because she is having severe diarreha and her bum is a bit sore.
-where is that bus!?-
So she had a blood test to evaluate her virus and see which medication on the market would be a good choice to change too. They have come so far in the world of HIV and AIDS!
I take Tray and Joshua down to NYC next week for their follow-ups. Tray will see his old cardiologist at Babies Hospital and have an EKG and echo. Then Joshua and Tray will see Dr. Cargan the neurologist together. Joshua will have his blood levels looked at and Tray is going to be evaluated to see if he needs some Physical therapy. He is definately weaker on one side and it is suspected that he had a stroke when he was a baby. In addition, he is still microcephalic (abnormally small head) and I just wanted a professional assessment about what that may mean for his future.
-still no bus!-
Tray surgery for his ears has been set for the 3rd of October, it will be a 23 hr stay at the hospital. It was hoped that the surgery to fix his penis and the tubes for his ears could be done together, but apparently it was not meant to be. Life goes on.
Well, that is it for now. In need to call and find out what is up with this bus, so no little stories today. I know, I know you are all so disappointed, aren't you! LOL I promise next time I will be sure to share one with you! :-)
Take Care and God Bless.
Renee
Tuesday, August 21, 2001 at 06:04 PM (CDT)
Hi everyone!
Well, Nettie is home from camp. She had a great time and made many new friends. She is looking forward to next year, however she was very upset to learn that Joshua will be going with her! She sees camp as her domain and is having some difficulty with the concept that she will have to share the experience with her brother. In fact, as Tray ages, he will qualify too! Poor thing, never gets a break does she, or so she would have you think LOL.
Tray saw the urologist and will be scheduled sometime in his lifetime (sarcasm there) for the repair of his extra "pee" hole. Apparently there is a very long surgical waiting list for urology procedure. He has also been having some new difficulty with going to the bathroom. It started with him saying his belly hurt one night last week and progressed to him refusing to urinate until he was going in his pants or me making him sit on the potty chair with his hand in a bowl of warm water. He claims it doesn't hurt to urinate, yet he strains and tenses while going. He has made some improvements over the last 24 hours, and his urine was cleared by the laboratory. So we are just waiting to see what happens over the next day or two.
All of the kids are home now for the next two weeks, oh how do parents do it with them home for the entire summer!!!!!!! Joshua is taking it all in stride, but Nettie is driving me crazy with the idea that she should be occupied at all times with pre-planned activies. NOT BY ME SHE WONT!
I had said before that I wanted to share little tid bits on one of my children each update, so here goes this weeks.
Nettie has made her requests very well known regarding her desire for a sister. Well, the other day at clinic, she informed all within hearing distance, that I was going to get her a peach sister for Christmas. I was taken a bit by surprise by this comment and wanted to know how I was going to do this for her. She simply stated that I needed to put the baby in my stomach and have it come out on Christmas and she will name it "Alyssa". Needless to say I had to do some quick explaining that Santa doesn't work that way and babies can't come and go out of bellies as easily as she thought that they did. I see it may be time for a little talk on the birds and the bees in the near future, or at least before Christmas comes! LOL
Take Care and God Bless.
Renee
Wednesday, August 08, 2001 at 07:38 AM (CDT)
Hi everyone!
Just dropped Nettie off at camp. She is going to Camp Hole in the Woods for the week. She really loves going to camp! Her IVIG went wonderful and no problems after either. Not even the achy muscles or headache! We changed one of her HIV meds back to 3 times a day instead of 2 times to see if we can get some control of her diarreha. She has a least one bout every morning and usually another each nite as well as 2 or 3 more throughout the week. Hopefully with a smaller dose given more often it will help. We shall see!
We took the kids to the local Renissance Fair yesterday. They loved it! We saw a jousting match, kids got "tatoos" on their arms, I got an ankelet made out of chainmail (very pretty) and we ate turkey legs! Most people were dressed in traditional costumes and we even saw a parade at the close of the day. Very nice.
Recently I realized that I typically limit my news here to just medical in nature. I would like to be sure to add some about at least one of the children that was "non-medical" each update also. So that all can see what beautiful children we have (no bias here LOL)!
So for today's update, I thought I would share with you something about my baby Joshua. When Joshua was a baby and then after he was diagnosed and in the hospital, Peter and I each had a song that we would sing to him whenever he was upset. My song was "Amazing Grace" and Peter's was "Going to Carolina in my Mind" by James Taylor. About 2 months ago I came across a tape at a garage sale of James Taylor's top songs and this song was on it. I played it for Joshua when he got in the van one day and he immediately started to sing what words he could. He also asked to hold my hand while the song was on. Now, he asks us to play the song each time we get in the car for a trip and he has to hold either mine or Peter's hand throughout the entire song. He has a look of complete contentedness and happiness on his face every time he hears the guitar start and the words come on. It is such a remarkable thing to witness the power of music and how much a simple tune can bring such peace to a child who has been through so much in his short lifetime. It is also a testimony to the fact that Joshua is going to be ok. At least that is the way I see it when I look back at his round face and his red hair and the barely visible scar that runs along the entire side of his head and just down past his little ear and spills onto his cheek, and see him singing mostly the wrong words (because he can't hear them due to his hearing loss from the chemo), holding our hands with his eyes closed and his head tilted sideways listening to the rhythm of the song. I know, in my heart, that he is going to be fine, because he can find joy in the little things in life. Now if only we could all learn how to do that, what a better world we would live in.
Take Care and God Bless.
Renee
Thursday, July 12, 2001 at 07:41 AM (CDT)
Hi everyone.
Though there really isn't anything really going on, I just thought I would give a short update. :-) All continues to go well here. Annette received her IVIG back at the clinic yesterday because there is a national shortage of the brand we usually use. Therefore we had to try a new brand and didn't want to chance a reaction at home. All went great and now she will receive this brand at home from now on. Nettie is going to Alexandria Bay in the 1000 Islands with her summer school class today. She is so excited, it will include a 2 1/2 hr cruise and a trip to a deserted stone castle that sits on a small island. But I think her nurse was even more excited to go, she LOVES field trips! LOL
Joshua seems to have finally cleared his poison ivy, although I am still suffering with some small patches!! He has had the croup for the last 3 morninings and he has bad breath, so we are pretty sure that he will be sporting a good sinus infection in the not to far future. He also mentioned to me today that "sometimes my ears get dirty." So when asked if his ear was hurting him and that is why he says it was dirty, he said yes. So we will be visiting the pediatrician this afternoon to see what is going on. Otherwise he is doing really well. Joshua's next MRI is on the 5th of August, but since his 2 year mark, I am so much more relaxed about these scans, and don't really even think about them until the day of it. Joshua on the other hand, can't wait for his "white" medicine!! (propofol). Go Figure. Peter and I joke that Joshua won't be into the crack or pot, he'll be dealing in propofol on the street corner! LOL
Trayvon is doing very well!! We have really been expecting something to happen and it hasn't! He had the one ear infection, but that was it. His INR/PT (these are the levels that the doctors use to determine how fast or slow a person is clotting. Tray has 2 foreign objects in his heart -little seals- and therefore is at a risk for a stroke if his clotting time is to slow.) are right where the doctors want them. So we go back in 3 weeks check it again and then if all is well, we go back every 4 weeks for a finger stick. So much better than the every 72 hours deal. He has been doing great at school and really enjoys going. He is really tired when he comes home and typically sleeps for about 2 -2.5 hrs each morning. Imagine if he went to a full day! He'd be zonked out by 4 for the night. LOL
Well, that is about it. I guess I actually had more to say than I thought, you knew that before you started reading though, didn't you!
Take Care and God Bless.
Renee
Thursday, May 31, 2001 at 12:30 PM (CDT)
Hi everyone!!
Well, Tray has moved in and made a wonderful adjustment!!! He has been very healthy other than the one big ear infection he came down with only 3 days after his arrival. ;-( We have been playing with his coumadin levels and it was getting pretty frustrating going in every 72 hours and then daily for the blood tests or finger sticks. It seems we have finally settled on an acceptable level, 1.8 was his last one. Our new pc (pediatric cardiologist) has also reduced his lasix from 2x daily to once a day. What a help with the toilet training!! Which by the way has been successfully completed. He is completely off diapers, even at night now. Truly amazing! I am waiting to meet with our new cariology team to see what their expectations and plans are for Tray and then discuss them with his old pc to see if we are all on the same page. It is my hope that they will have a discussion with the NYC cardio before they meet with me, but that would just be way to simple!! We all know that the medical feild goes out of its way to make things more difficult! LOL:-)
Nettie has just returned from a week of Camp. She didn't have a very good time it seems. She was very disappointed that her favorite counselor was not there and she had a bad experience with another counselor, nothing bad really, but to Nettie it was. So she is happy to be home, but is anxiously awaiting her next week at camp at the end of the summer.
Joshua also went to camp (day camp). He had a good time, but came home with a bad case of poison ivy all over his face. We are not sure where or when his exposure occured. However, it would appear that he continues to be exposed even though camp is over, because he is still breakiing out all over and now I have it on my arms and legs too! Let me tell you, this stuff is ITCHY!!!! He is now on oral steriods to try and stop the spread of the systemic reaction and benydral. He also had a cellulitis infection in his leg, probably from a spider bite and is on antibiotics for that too. Poor kid, instead of decreasing meds, he keeps getting stuck on more!
All 3 are starting summer school programs on Monday, YEAH!! Tray will only be going in the morning, but Nettie and Joshua are all dayers. They will have a lot of fun. Joshua will continue to learn sign language and practice his academic goals and Nettie is in the socialization group this year. She will be going on many trips where the goals will be for her to ask directions, locate common landmarks (in case she gets lost), order her own food and to request information from authorities. It should prove to be an interesting summer for all of them.
Well, that is about it!
Take Care and God Bless.
Renee
Monday, May 07, 2001 at 08:49 AM (CDT)
Hi everyone!!
We spent the whole weekend in Newburgh, NY with our new son Trayvon!! He is beautiful and an absolute doll. He is extremely easy going and readily came with us all day Saturday and Sunday morning. He wanted to stay with us, but we had to take him home early on Sunday so that we could get the kids home at a decent hour. He is so easy to care for and bonded right away with Nettie!! To look at him, you would never know that he had been sick at all. He plays hard, and naps hard :-). He can hold his own with the older kids and has no problem getting his point across despite an obvious severe delay in speech. He only has about 30 words that he uses readily, he has the tools but not the motivation to speak. I think that will change once he is a steady preschool program with consistent speech therapy. I will upload a picture (which I have tons of!!!) as soon as I can figure out what is wrong with my digital camera.
Thought I would also let you know that Joshua's MRI was CLEAR AGAIN!!!!!!!!!!!!! Thanks to God. He is sick right now, but I can handle the croup as long as "you know what" stays away for ever! He has a very bad case of the croup right now and is already on the antibiotics for a sinus infection. So it is probably just a viral infection, but thought the doctor might have an idea on how to get the cough under control.
Nettie is doing great and had an excellent report card!! She is already missing Trayvon and can't wait until this weekend. However, it hasn't stopped her from constantly reminding us that she wants a "brown" sister next!!! LOL
Well, that is about it! Update you more as we find out more.
Take Care and God Bless.
Renee
Saturday, April 28, 2001 at 06:05 PM (CDT)
Hi there!!!!!!!!!!!!
Well, it is official. We will be enlarging our family this month by one little brown 2 year old!!!!!!!! His name is Trayvon and he is beautiful. We met with the social workers on Thursday and then with the doctor on Friday. Thursday was very difficult and the choice was a difficult one. So we decided to speak with the cardiologist before making any decisions. Boy am I glad we did, when we got off the phone, there was no hesitation!!!! The answer was a resounding YES he is meant to be our son!! He has had a rocky medical past. He has hypoplastic left heart syndrome (born with only half a heart, and one of the chambers he did have was doubled). He was also born with some malformations of the intestines, stomach and liver, but all are repaired and will be of no concern as he ages. In addition he had a condition called hypospadias, this is where the opening of the penis is on the under side of the penis instead of at the tip. This to is completely repaired and requires no more intervention. He takes some comman heart medications and an antibiotic daily. He is a beautiful, happy little boy who also likes to eat dirt and paper, YUCK!! Our insentive to keep the papers cleaned up in the house. LOL Nettie and Joshua are thrilled and looking forward to meeting him this Friday! I'll let you know how things go.
Take Care and God Bless.
Renee
Friday, April 20, 2001 at 03:56 PM (CDT)
Hi everyone!!
I have great news to report!!! I just got back today with the two kids from NYC. Joshua had his neurology appointment and Nettie had a follow-up with the plastic surgeon, a visit with the ped. surgeon regarding her G-tube, and a visit with the HIV clinic to discuss her lipodystrophy and any possible solutions. Joshua's appointment went very well and the neurologist is VERY pleased with Joshua's progress. He also reviewed his MRI's and said they look GREAT!! No med changes needed. Nettie's visit with the HIV clinic was about what we expected, no real solutions are available at this time. The plastic surgeon was very pleased with the results, although he never saw it when her hump ALL gone, it's growing again, but smaller than when he saw her, so he is looking at it as a success. No need for any more follow-ups, unless we decide to do more surgery. Her visit with the general ped. surgeon was different! We had a small problem with her tube 2 days before we left for NYC. She has been complaining of pain at the site of the tube for about 2 months now. We have also noted that there is constant drainage and we have needed to change the tube quite frequently. Well on Tues, the day she got her IVIG, her balloon popped and the tube fell out. We did not have ANY tubes in the house so we called the nursing agency brining her IVIG and asked them to bring one. Once the insurance issue was rectified the tube was delivered. We put it in and guess what, the next morning the brand new tube burst and we had no access to another one. So we substituted a foley catheter until we got to NYC. The surgeon measured her stoma to see if it was a deepth problem, it wasn't, so no answers were given to the popping balloons or leaking. But we did get a new tube and she likes this type alot! :-)
But I've got even bigger news than all of this!! LOL We are adopting again!!!!!!!
It hasn't been solidified yet, but the first meeting with the social workers is next Thursday. His name is Trayvon and he is 2 years old. He has some health related issues, but I won't go into those right now. I am just thrilled to death right now and have already dusted off the stroller and bought a new car seat!!!! :-) I'll keep you all updated.
Take care and God Bless.
Renee
Tuesday, April 03, 2001 at 10:09 AM (CDT)
Hi everyone!! Hope all is going well for you out there. Nettie and Joshua are doing ok. Joshua has been fighting a "cold" for a while now and we are hoping that he can do it on his own without needing an antibiotic. He hasen't been "sick" since his pnemonia on Feb. 1st!!!! This is the longest he has been without antibiotics in almost 3 years!! Yeah.
Nettie on the other hand developed a very bad sinus infection and needed an antibiotic to clear it up. She is feeling better with her nose and head, but has begun to complain a lot about muscle cramps. First they were in her legs (inner thighs) and then her lower back, now it is her triceps in her arms. Needing heating packs, ice packs and motrin to deal with the pain. Anyone have any ideas?? I would love to hear from you. A few weeks back she also had a night of really severe adominal cramps that made her scream out and cry. I hate seeing her in pain.
But overall, things are relatively quiet here.
Still working on the adoption, as we hear more I will let you know!! :-)
Well, that's all for now.
Take care and God Bless.
Renee
Friday, March 09, 2001 at 10:28 AM (CST)
Hi there,
Just letting you know, that all is still quiet on the home front here!! YEAH!! We all have the same sinus crud, but are holding our own. Peter's birthday was yesterday, the big 35! Dosen't look a day over 34 though if you ask me. Nettie's is this month too. She won't let you forget it either. LOL I can hardly believe she is going to be 11 years old. She is still just a little girl to me, yet she has the body of a young woman (and the attitude too!). She is still as beautiful as ever. I am getting nervous, because she always talking about "boyfriends" now and I don't really think that she has the developmental where-with-all to know exactly what that means. She is talking about kissing boys and holding hands, and I worry so much about how nieve she really is. It would be so easy for a boy to convince her that anything is alright. She is so innocent like that, she believes ANYONE!! Yet I don't want to fill her head with ill thoughts or worry her about things that she is not aware even exist yet, by bring up the "topic". I guess, we'll just have to feel our way through this phase.
Joshua on the other hand, also has girlfriends. 3 as a matter of fact, making daddy very proud. Have to wait and see how these girls keep him in line, I'll take notes for home!! LOL
Anyways, just wanted to let you know we are doing well and things are calm. Take Care and God Bless.
Renee
Sunday, March 04, 2001 at 01:38 PM (CST)
Hi everyone,
I just wanted to let you know that things are still going very well here!!!!!! We are preparing for a big Nor'Eastern storm tonight and tomorrow. Getting some extra groceries and lot's of movies for the kids! Nettie is fighting a sinus infection and a cold, did some heavy duty wheezing last night, but otherwise doing great. Joshua is likewise just dealing with a bit of a cold, woke this morning with the croup and a bit of a red eye. Hoping it isn't pink eye, YUCK, don't want that while snowed in and no way to the docs or pharmacy!!! But overall, things are going really well. We are very happy and looking forward to hearing on a couple of children we are looking into for our adoption.
Oh yeah, suppose to go to NYC with Joshua to see the neurologist, but with the storm, looks like we will be postponing that trip!
Well, Take Care and God Bless.
Renee
Monday, February 19, 2001 at 12:22 PM (CST)
Hi everyone!
Just a quick update to let you know that all is going very well here! Following Joshua's little pneumonia following his MRI, he has done great! I really believe that the very high dose of antibiotic that they gave him for he pneumonia, finally cleared a bunch of the sinus stuff. He has yet to have so much as a stuffy nose since, knock on wood.
Nettie likewise is doing great. Her t-cell count was still over 1000 and her viral load was still undetectable. Yeahhhhhhh! Unfortunately, her "buffalo hump" that she had removed last Sept. is returning. She is not yet aware of it because it is enlarging between her shoulder blades and she can't feel it there, nor see. I will not be pursuing any more treatment unless she requests it, like last time. She is a very happy and healthy child at this time and I couldn't ask for more.
The adoption is moving along. We are "looking" at different children and the agency is trying to find a good match for us. I can't wait to be a mom, again!
Well, that's about it here.
Take Care and God Bless.
Renee
Thursday, February 01, 2001 at 07:54 PM (CST)
Hi there everyone!
Well, we are home from the hospital finally and the results are in. . . ALL CLEAR still. So it must have been a prolonged recovery phase from the seizure activity he had experienced. However,not all went well today. After we got the wonderful news about the mri, we packed Joshua up and brought him home, as soon as Peter put him in the car he began to shake really hard. By the time he was home, he was breathing very fast, his temp was spiking and he was shaking like a leaf. So I called and was instructed to bring him back to the ER. So back in the car, back to the hospital. When we got there it was assumed he was having an allergic reaction to the anesthesia. His respritory rate was 60 (normal is 18-28), his temp was 1o3.9 (ear) and his blood pressure was low. They took us straight back and hooked him up to the monitors. His sats were 90 (normal is 95-100) and he was "tight" in his chest. So they gave him some albuteral in the nebulizer and watched him closely. Within 1 hour his temp under his arm was 105.2 (that would be 106-107 rectally!!). We had a chest x-ray taken and it turns out that he probably aspirated during the scan and developed a pneumonia. So we are home, much cooler, still breathing a bit fast, but overall doing better. We are back on another antibiotic, and need to see the pediatrician tomorrow for follow-up. Apparently aspiration pneumonia can be unpredicatable and may become worse before it gets better. So I will be on the watch tonight!! The good news though is that the MRI is still fine and now we won't have another until May. I will be in contact with the Neurologist tomorrow to see what, if anything, he wants to do. We have already increased one of his meds to try and prevent any more seizures, and next time I will not be so nervous if he continues to be weak for an extended period of time.
Nettie continues to do excellent and her t-cells are doing wonderful. Don't have the viral load yet, but I am confident that it is doing great too.
Well, gotta go. Take Care and God Bless.
Renee
Thursday, January 25, 2001 at 09:41 AM (CST)
Hi there!! Well, things keep moving on here! Joshua did great through his surgery!!! I think I already said that before, but I can't remember. We have had our follow up appointment with the Allergist and the verdict has come in. He is allergic to DOGS!!!! We have had a dog Joshua's whole life and now we have 2. Nettie's service dog and our 16 year old border collie. I feel so guilty that so much of this has been because of a stinking allergy. Who knew!!?? Last night he was having such a difficult time breathing I was so sad that there was so little I could do for him. We have started him on allergy medicine, Claritin, we will be purchasing a high quality vaccuum cleaner with the HEPA filter as well as a air cleaner with a filter to help clean up the air and house. We will also be throughly cleaning everywhere he sleeps and the furniture and not allowing the dogs anywhere near these items. Because his sinuses are so congested again (only 2 weeks after surgery) he is wheezing again. He is now on asthma control puffers and albuteral PRN. As if that didn't take the cake, he has begun to have seizures again and needs to increase his seizure meds again. I know that there are so many other kids out there with so many bigger problems. However, after everything that my two babies have been through, I just want Joshua to be "WELL" for a while so he can see what not being sick feels like.
On a good note, Nettie was approved for her IVIG for another year, and as her Nurse Practitioner stated "By that time, the doctors won't remember what they said so she'll just stay on it until it stops being of use :-)". She has done sooooo good on it. I am very pleased that she will be staying on it and in March, she will begin home infusions since she is now on Peter's private insurance as well as Medicaid. So things are going well with Nettie. She had her labs drawn yesterday, so I will report her numbers when I get them.
Well, gotta go and a get Joshua to take him to the dentist to get those 8 cavities filled. This is looking up to be a great day!!!! Yeah right!
Take Care and God Bless.
Renee
Wednesday, January 17, 2001 at 08:15 PM (CST)
Hi everyone!!! It has been a long time since our last update. Joshua has had a little going on since last update. He had since surgery a week and a half ago on his sinuses. We debated as to wether or not this was the right decision, but a second opinion suggested that at the very minimum, it may help a bit. So we had cultures done, a ciliary biopsy and sinus scraping done. All sinuses were done on both sides. The cultures all came back negative (dr stated that he expected that, since Joshua has been on antibiotics for so long). The biopsy is not back yet, but this is where I am betting there may be a problem. It only makes sense that the cilia in his ears were damaged by the chemo so why would the cilia in his nose and lungs not also be damaged? But we'll have to wait and see. His most recent immune studies have shown a very nice improvement, to everyone's suprise. I was thrilled! So we just wait and see what happens with the biopsy.
Nettie has had a wonderful month!!! She is doing well in school. She recently was tested for Auditory Processing Disorder. She did very well with the testing, but the ability to score it only goes down to 7 years and developmentally she is lower than that in some areas. Therefore, certain aspects of the test were unable to be administered. However, based upon what testing was done. Nettie does demonstrate a great deal of difficulty processing things presented auditoraly. It was suggested that we try using a device called an "Easy Listener". She would wear a little box like a walkman with headphones. The teacher would wear a microphone which links right to the box Nettie is wearing. That would mean that no matter what the noise level in the room, or where the teacher is, the teacher's voice will always sound only 6 inches away from Nettie's ears. We are also going to try using a computer program calle Earobics to try and retrain parts of her brain to "listen" better. Auditory Processing Disorder is sort of like having dyslexia of the ears. The ears hear fine, but the brain dosen't receive the message properly. So we'll see if any of these things help her.
I also would like to mention that this has been a hard month. Two girls I have known for some time have passed on to a better life. But the ones left behind are very, very saddened by their departure. Prayers for Amanda and Jennifer's families would be greatly appreciated. In addition, another friend has just relapsed for the 3rd time. It is a very anxious and sad time for Hunter's family. Prayers are needed for this family too.
Thank you and God Bless.
Renee
Friday, December 15, 2000 at 08:10 AM (CST)
Hi everyone!! Well, we have made it through another MRI and . . . it was ALL CLEAR again!!!!!!!!!!!!!!!!! Peter and I are so relieved it is beyond words. We have been told that the highest chance of relapse for Ependymoblastomas, is within 2 years of ending treatment. Well guys, tomorrow is the 2 year mark and he has a clean MRI! We are now moving to every 4 month MRI's for 1 more year and then to every 6 months for another 2 years. Then the word "Cure" comes into the picture. So the way I see it, 7 more MRI's and Joshua is cured. Boy doesn't that make it sound so easy and close. LOL.
Joshua has also reached another milestone. . . he lost his FIRST TOOTH! Granted the anesthesiologist assisted in it's departure from it's home. However, it was sooooo ready to come out but, Joshua was to afraid to let me help him part with it. The toothfairy visited last night bringing $2 with her (She's a very nice toothfairy, if I say so myself. :-)). I don't know if I had reported before that Joshua and Nettie had both had their bi-annual dentist appointments. Joshua has/had 10 cavities. But 2 of them are in the two bottom front teeth (one of which is now gone and the other will be close behind) so he will only have 8 to fill. The cavities are ALL along the gum line, probably caused from all of the bacteria that lived in his mouth from the time he was on chemo and the gum line swelled over the tooth and we couldn't have reached it with the toothbrush. His permanent teeth look great on the panoramic x-ray though, so this problem should be limited only to the baby teeth. The fillings are all easy and he doesn't even need to have any novacain. Nettie had only 1 cavity, her very first one. Not bad for just learning to eat orally a year ago and having had nothing but formula PO for 9 years! It to is also very superficial and will be an easy one to fill.
As for Joshua's sinuses. The surgery that had been scheduled for the day after Christmas, has been cancelled by the doctor because he developed an attitude when he found out that we were looking for a second opinion. I was shocked. But we are trying to get in quickly with the doctor that did Joshua's surgical second opinion for his adenoids and I really liked him and his professionalism. He is holding his own with no antibiotics or decongestants right now, just has a loose cough and BAAAAAD breath (common with sinusitis). But otherwise, hanging in there. In a positive note, all of his immune studies that were ordered again have come back looking even better since the last time they were drawn! So we are now much more relaxed that this is not an immune dysfunction. That is good and bad. If it were, there would be a good source of treatment, the same one Nettie gets, IVIG. But since it's not, we just have to look more carefully at other potential issues (ie. anatomical, radiation damage or cilia dysfunction {from the chemo, just like the damage to his cilia in his ears, the cilia in his nose may not be working either}).
Nettie was told "NO" to increasing her IVIG or giving it more frequently. Although, I have to say, she began getting sick only 1 week after her infusion, so I am inclined to agree with them on this one too. YUCK. I hate having to say that they were right. HAHAHAHA. We're just going to keep a close eye on her lungs and hope that the Pulmicort medication she takes everyday in the nebulizer now, will help keep those pneumonias at bay. The last time I updated was the day she had her holiday concert. She did MAGNIFICENT! She sang all of the songs, followed the rest of the chorus in doing the hand movements and such and just looked beautiful. I was so proud of her I was crying half of the show. She has come so very, very far in her life. She is also coming along in her reading at an amazing pace. She took a spelling test last week on words that she had never studied because she had been out sick and then had IVIG. She got a 75%!! She actually sounded the words out as oppose to just trying to memorize them and actually did very well on her test. She then took her actual spelling test for that week and got a 100%! She is also doing very well with her service dog, Kama. She has been using her commands, feeding him and loving him very well. She has grown so much!!!
Well, that it is all for now. Not that that wasn't alot in the first place.;-)
Take Care and God Bless.
Renee
Tuesday, December 05, 2000 at 09:52 AM (CST)
Hi there! It has been a VERY long time since my last update. We have been very busy with many things. Several new things have happened that I should mention...
Joshua will be having more surgery the day after Christmas on his sinuses. He had a CT scan recently and has had a severe sinus infection that has persisted since the removal of his adenoids. The CT scan showed a huge infection on the left side and a moderate infection on the right side. However, both of the sinus are sealed shut with "stuff". It is not known at this time if the "stuff" is infection, or an anatomical defect so the surgery will help to answer those questions. He is also having a more through work up of his immune system tomorrow, this was ordered by an allergist and asthma specialist. He wants to rule out an immunological or allergic basis for all of his illnesses. So we shall see what comes of all of this! :-)
His next MRI is the 14th of December. Say a prayer or think good thoughts!
Nettie has been doing well for the most part. We all had a bad GI bug that laid us up for a while but we've all since recovered. Nettie has been treated 2x now for a sinus infection that started to cause a bit of lung problems. We are looking into the possiblity of moving her doses of IVIG a week closer or increasing her dosage a bit to see if we can head off these infections. She seems to get sick the third week after her infusion, therefore she may just need a more frequent infusion to stay healthy. I should have word back on that today. Mind you the operative word here is "should". :-) Nettie also has her very first concert tonight!! I can't wait to see my baby singing so beautifully with the other children. She is also excited to be all dressed up and to be video taped doing something so "grown-up". I'll let you know how it goes!
Well, take care and God Bless.
Renee
Friday, October 27, 2000 at 04:55 PM (CDT)
Hi everyone!
Well, the surgery is over and Joshua came through it with flying colors. The ENT stated that the adenoids were not that enlarged, and that suprised him. However, they were very "slimey" (nice way to describe something, huh?). The base of his nasal bed was also "slimey" and he feels that this stuff was just a breeding ground for bacteria. We are going to keep him on an antibiotic for the remaining 7 days of his most recent prescription. He also put tubes in his ears after draining out all the old infected fluid that was stuck there. Now we will cross our fingers that this will fix most of the things that have plagued him in the recent past. As for Joshua, he is doing great!! We even went to Pizza Hut after his surgery, he hasn't complained once of pain and has a normal activity level already! Kids are amazing creatures.
Nettie is doing good. She has been fighting a cold for about a week now that is trying to settle into her lower right lung. She has been using the nebulizer morning and night to keep things under control. I am glad that her next infusion of IVIG is next Wednesday to give her the extra umpf to fight off these viruses that are going around. She will also have her levels checked to see how her t-cells are doing. When we checked them 3 months ago they were down bit from 2 months earlier. Even though they were still in the normal range, she has always had a t-cell count of 3,000 or higher and last count was only 1,200. So I am a bit anxious to see what they are now, after 3 months. Probably just fine.
On the personal front again, I have begun the first round of fertility meds. It is possible by this time next month, I could be pregnant. It is possible by this time next month, I won't be pregnant. I realize that is obvious to the rest of you, but I need to keep reminding myself of that fact all the time. Some out there may understand what I mean.
Well, Take Care and God Bless and Happy Halloween!!!!!!
Renee
Monday, October 23, 2000 at 10:18 AM (CDT)
Hi there everyone!!
Just a "quick" update on the crew. We were busy over the weekend going to pumpkin farms and hayrides! It has been absolutely beautiful weather here and we are trying to make the most of it.
Nettie is doing GREAT!! She continues to train with her dog. We are excited too, because National Geographic wanted to do a story on children and therapy dogs. Guess who just happen to be at the right place at the right time! Nettie is going to be the center of their story on therapy dogs. We do not know yet whether or not this is a tv or magazine story. I'll find out today.
Joshua was doing very well until Saturday. I had the doctor start an antibiotic 2 days after we scheduled the surgery with him becasue Joshua was miserable with a sinus infection. He started on Lorabid and did GREAT!! However, it was only for 10 days. 2 days after ending it, he is sick again. Yesterday he had to be on the nebulizer all day (we brought in the car on the way to the pumpkin farms) to control the croup and nasal congestion. I just called and they will start him back on another antibiotic until his surgery is done. No fever, but miserable. We also now have an appointment with a an allergist to do allergy testing. We had a second opionin done for the adenoid surgery and the doctor agreed with the surgery, but felt strongly that he should be tested to see if there is any relationship to his frequent sinus infections and croup episodes. The good news is, he has been seizure free for 2 months now!!!!! The neurontin likewise seems to be helping with his neuropathy. He is much more tolerant of things to do with his feet and back than in the past.
Well, that is all!
Oh yeah! We are in adoption classes right now! We are very excited. I also have an appointment with the fertility specialist on Tuesday to discuss my lab work. Here's hoping for our miracle!
Take Care and God Bless.
Renee
Saturday, October 07, 2000 at 04:56 PM (CDT)
Hi there everyone!!!
It's been awhile again. :-) We have been very busy as of lately and tend to forget all that goes on here if I don't write it down right away.
Anyways, a few new developments have occurred. Joshua is scheduled to have surgery to remove his adenoids and to put tubes in his ears on the 27th. We had an audiological done on Tues. which revealed that his hearing in his left ear has decreased so much that he is virtually unable to hear us, even with his hearing aids in. (left side only). There is a lot of fluid still present behind his eardrum as a result of faulty eustachian tubes. The ENT does feel that the culprit at this time are the adenoids, but since he can't be 100% sure and since he will already be under the anesthetic, no sense in not putting in the tubes too. Just to be on the safe side. He is hoping to get him through the winter with few to no ear or sinus infections to try and let everything heal. He is also going to take a look at his sinuses with the endescope to be sure there are no serious signs of problems there that need immediate attention. We are pretty sure that there aren't, but again, better safe than sorry. Here's hoping that this will be the answer to many of his health problems.
Joshua has also started a new medication, Neurontin to help curb his neuropathy in his feet. This neuropathy (pain or tingling sensation) is a result of the chemo. We are going to increase his dose slowly to see were it helps at the lowest dose. It is also another seizure med and since he is already on 2 seizure drugs, we have to be careful that they don't compound the side effects of each other. There is also a chance that it may cause him to have more seizures, sort of like when he had more seizures on the higher dose of Tegretol and needed it lowered and added another drug. So we'll see there too.
Alas, my little brown pumpkin, Nettie. She is doing well. She had another dose of IVIG in the clinic and had NO problems at all, other than boredom. It does not look as though we will be able to give it at home, because the infusion companies will not accept the reimbursment rate that insurance co. is willing to give. So we will do it in the clinic monthly. She has been having a little trouble with her asthma, but nothing serious. She is using her nebulizer 2x daily. She is also training with her service dog at this time and doing great!! We get to bring home "Kama" the day after Thanksgiving. HEY! Well that is about it.
Gotta go do Nettie's wild hair! :-)
Take care and God Bless.
Renee
Thursday, September 28, 2000 at 03:57 PM (EDT)
Hi everyone!
I have updated several of the listserves but thought I would write the wonderful news here also. Joshua's MRI on Monday was NEGATIVE!! So far he remains cancer free. It is so hard to get through those days. But so wonderful to hear the good news. I become a cleaning fanatic though. :-)
Nettie is doing great still. We thought that we might be able to move to home infusions for her monthly IVIG, however, there seems to be some contractual difficulties with our nursing agency and the local IV companies. So this Wednesday she will have her infusion in the clinic again.
On a personal note. Peter and I have begun the process of infertility treatment to try and enlarge our family. We have been trying for some time now, but it looks as though we will need some assistance from Gods of medicine. Go figure. I'll keep you posted if anything "new" should happen. ;-).
Take care and God Bless
Renee
Thursday, September 21, 2000 at 08:32 AM (CDT)
Hi everyone.
Well, today is Joshua's 5th birthday!!! I can hardly believe he is 5. 5 years ago today I was sleeping in a hospital bed with Nettie and then woke up, walked up to 4 flights of stairs and had Joshua via c-section at the same hospital. (Nettie had been in all summer for a severe blood infection). I feel so very honored to have the children that I do. They are my life. I know that Peter feels the same way. And to think that both kids have been on the brink of heaven far more times than I care to remember.
But it is also bitter sweet. I can't help but wonder why my baby was allowed to live, when other beautiful babies were taken from their loving families far to early. I have been to a total of 13 funerals for children who have passed from either cancer or aids. At each of those funerals, I ask "why?" Why were we so fortunate, why were our children now healthy (relatively speaking), why, why, why. I know there are no real answers, but the questions don't go away. I am very happy, and I don't mean to sound depressed. But my heart breaks for all of the chilren who fought so hard and still lost the battle.
I had asked you to pray for two little ones in my last update, both have since passed away from complications during their transplants. Now I ask you to say prayers of comfort for their loving families as they start a life they never dreamed they would one day have to live. One without one of their children.
I also ask that you say a little prayer tonight for Joshua as he has his MRI this Monday. As well as for all of the children in this world struggling with things beyond our comprehension. Hug your children tonight and be thankful for their presence, their beauty, their humor, their honesty and their love. I know I will be. Joshua is 5 today, a miracle in itself. For this I am so very, very thankful.
Take care and God Bless.
Renee
Saturday, September 09, 2000 at 12:05 AM (CDT)
Hi everyone!!
It's been a long time since our last update, but not intentionally. I updated immediately after our trip to Florida, but did not realize the update didn't post until today. So here goes!
Nettie and I returned home today from NYC following her surgery to remove her "buffalo hump". We arrived right on time at the airport, but no transportation had been sent for us, so we had to take a taxi and were over an hour late for surgery. However, surgery went very well and she was able to go straight to the peds floor instead of the PICU. We did have a significant problem getting her pain under control and ended up using some morphine to help her through the night. The next morning she received her IVIG with nothing more significant than a minor rash on her face and we were discharged! We spent the night in NJ just to be cautious should any complications occur. But there were none and we flew home without incident. However, she has some significant rales and ronchi in her lower right lung now and haven't really improved despite several nebulizer treatments. I hope the IVIG will give her the ability to prevent a pnemonia from stepping in. We'll see.
We had a wonderful time in Disney World. But, and this is a big but!.... we will NEVER go to Florida in August again!!! It was over 90 every day with 90 - 100% humidity! We saw some shows 2 and 3 times just to stay in the air conditioning. The kids did great though and we loved staying in a Disney resort. Much more convienent than any of our other trips.
Joshua started Kindergarten and gymnastics this week. He loves both, but is very, very tired afterwards. We had an appointment with the ENT about his sinuses and his ears. He thinks that Joshua's adnoids are the source of many of his problems. The next time he is sick we are to go straight to him and he will try to determine the ultimate source of infection and then determine if surgery is needed. If he does remove his adenoids, he is also going to use the endoscope to visualize his sinuses and determine what, if anything, should be done to them. So well see there too. This is a busy month for us! The kids start horseback riding lessons tomorrow, Joshua has his 5th birthday (the 21st)but his party is on the 24th, an MRI on the 25th and Peter is having eye surgery on the 28th in Canada. Things are never dull around here :-).
Several prayers are needed for some little ones out there in the world of bone marrow transplants and yours would be greatly appreciated. Tyler and Ariel are in the same hospital and the same PICU fighting for their little lives after some nasty infections set up camp following their bone marrow transplants. Please pray that Tyler can come off of the ventilator and let his lungs heal, and please pray that little Ariel keeps fighting those nasty leukemia cells and she continues to get stronger than the fungal infection in her lungs.
Thank you and God Bless.
Renee
Friday, August 25, 2000 at 10:25 PM (CDT)
Hi,
Just wanted to leave a quick note before leaving for Florida early Sunday morning. Our plane leaves at 6:00am so we have to be at the airport by 4:30.
Nettie and Joshua are doing well. Joshua needed to go on yet another antibiotic becuase his ear infection was still persisting. He is now on Cefzil and Floxin ear drops and doing much better!! I signed both kids up for gymnastics today. They enjoyed an open gym session today and it was such a nice work out for both of them. I look forward to seeing them in structured classes. Nettie is getting her hair braided tomorrow morning. It will be so nice to wake up, throw it up in a scrunchie, and go! Right now it is quite the process to do her hair. Looking for the easy way out for mommy!!! :-)
Well anyways, it's time to sleep so I can get up and PACK!! I am excited for Disney. Touch base upon our return!
Take care and God Bless.
Renee
Monday, August 21, 2000 at 05:18 PM (CDT)
Hi everyone,
Well, we have been very busy since my last update. First, I'll get the bad news out of the way. Joshua had ANOTHER severe ear infection on Friday. He had just ended the Zithromax on Wednesday. He woke up from his nap screaming about his ear. The ear drum was ready to burst when the doctor saw it. Now he is on Augmentin and doing much better, but today he was VERY irritable. I don't know what all that was about.
The good news is, Peter and I spent our 2nd weekend away in 10 years. We went to a "retreat" of a sort sponsored by the support group I belong to for Nettie. They held it at the conference center owned by Syracuse University in a small town called Blue Lake. It was so wonderful!!!!!!!! Peter and I really needed some time away.
This is the week before we are off to Disney again and it is a very busy one! Trying to fit in all the doctors appointments and other needs before we leave so that the kids don't have to miss school in September. Nettie had an eye doctor appointment today and needed a stronger prescription and so we'll get her new glasses this week. She is also going to get "braids" done and have some adjustments done to her AFO's (foot braces). We also need to go and get new shoes and sneakers for Nettie. Joshua is going to see the pediatrician on Friday afternoon to be sure his ears are clear for flying and to get a referral for a visit to an ENT. I think it is time to get much more serious about caring for these infections. He is becoming resistant to some powerful antibiotics and this is going to be an ongoing problem if we don't get to the root of it now. I have my first physical in 4 years tomorrow and look forward to meeting with the doc on several issues. And last but not least, the dog (a 15 1/2 year old border collie mix, is in very bad need of some cortisone shots for his old hips. So we're off to the vet on Wednesday for him. I also recieved confirmation of Nettie's surgery on September 6th and arranged the flight and transportation today. Not to mention I found my missing car keys!!!!!!!!!! It was a very productive day and hopefully a productive week! :-)
Well, that is it for now. I will update after our trip to Florida and I'll think of you all while we wait in the VERY HOT sun in those nice lines. HAHAHAHA.
Take Care and God Bless.
Renee
Friday, August 11, 2000 at 04:34 PM (CDT)
Hi everyone,
Well, so much for not having much to report. Joshua was diagnosed with bilateral ear infections and sinusitis. He is doing much better now since the beginning of antibiotics. His immunology tests came back. For the most part they look normal, but his CD4/CD8 ratio is very low (these are different kinds of t-cells that help to fight infections. There is a balance that the body maintains to make sure that there is always the right amount of cells to handle most infections. Joshua's ratio is off because there are too few of one and too many of another, thus throwing the infection fighting scheme awry). He is also at the low end of normal for his antibodies (IgG) which also put him at risk for infection. As a result of these numbers, we will just keep a close eye on him and retest him in one year. It would appear that his immune system has just been VERY slow at reconsituting after the stem cell transplant leaving him prone to many different bugs.
Nettie likewise is sick. Today she was diagnosed with pnemonia of the right lower lobe. She had a chest x-ray and blood culture done and now is on antibiotics too. She is going to camp if she is feeling better by the AM otherwise she will miss her last week of camp. I am sure she also has a sinus infection but the antibiotic will take care of that too.
It's been a long day here at the house and looking forward to a nice warm bath and a good book I think.
Take care and God Bless.
Renee
Tuesday, August 08, 2000 at 06:37 PM (CDT)
Well, it was to be I guess. Joshua is sick. I knew something was up when he slept for 13 hours the day before. Nothing too serious but sick enough to get picked up from school today and to fall asleep at 5:45pm. He has a bad cough and an extremely stuffy nose (so much for the sinus thing behaving itself) :-) Hopefully we will ride this cold out and have no major issues to deal with.
Nettie gets her next dose of IVIG tomorrow. She is "camping out" under a tent made of a sheet stretched from her bed to a chair and tv tray. She is so thrilled to be doing this (can't imagine why though). I will prabably have to move her to her bed later tonight or she is going to wake up with one heck of a neck and back ache.
Well, gotta go and give Joshua a neb to help his cough and breathing.
Take care and God Bless.
Renee
Sunday, August 06, 2000 at 03:48 PM (CDT)
Hi there,
Thought I would give you a little update, since there has been little to update on ;0). Joshua has had 3 seizures since his increase in meds, and we are hoping that this is just his body's way of adjusting to the new dosage. He also slept for 13 hours yesterday - today, which for him is an unusually large amount of sleeping. We're keeping our eyes open for any fevers that may appear. His immunology tests aren't all back, but the ones that are are all normal! Yeah! So maybe all of his problems with his sinuses (which have been behaving themselves recently) are allergy related. The claritin may be doing the trick. He is still constipated all the time and I am having to give him extra doses of colace to move things along. I don't know why this is an issue for him.
Nettie is doing wonderful!! She has gained some weight and is now back up over 70 (71lbs to be exact). The IVIG has kept her from being sick for almost 4 months now, that is a record for her in the last 2 years!!! She did spike a temp (101 F) at school and said she had the prodrome headache, but her nurse watched her carefully, slowed down her day to almost a halt and let her sleep and hydrated her right away. Lo and behold, the temp went away all on its own. That means that her body is protecting itself like it should. I didn't like hearing that she had a fever, but I was ecstatic that it went away on its own with no further problems. It just proved that she is on the right treatment and doing well now.
Well, that is about it. Summer school will be over soon and we are so looking forward to vacation (Disney World AGAIN!!) :-).
Take care and God Bless.
Renee
Wednesday, July 26, 2000 at 08:15 PM (CDT)
Hi everyone!
I am so happy to report that all is very well here! I am enjoying working VERY much and don't want the summer to end! Nettie and Joshua are doing very well (knock on wood). Nettie is all set for her surgery on September 6th to remove her "buffalo hump". She will receive her dose of IVIG that is due that week, while an inpatient at the hospital. I am a little nervous because they are not going to be able to get her brand and we will have to try a brand she has not had yet. But I think that if it goes slow enough and she receives her benadryl and tylenol she should be just fine. We will also do a 5 day stint of oral steriods before going to prevent those nasty "wheezes".
Joshua has been doing well since the ending of his antibiotic. He is still sneezing but seems to be doing well. we finished the increase of his tegretol with no major side effects or problems.
Well, guess that is it!
Take care and God Bless!!
Renee
Thursday, July 20, 2000 at 07:07 PM (CDT)
Hi everyone!!
It's been a while! All is well her in NY. Joshua had his appointment in NYC with the neurologist. We are increasing his Tegretol to 500mg daily (up from 300mg). Even though the frequency isn't any less, the length of the episodes is considerably shorter. So the doctor feels the med is working, but he needs a higher dose to get rid of them all together. I also had a very nice and long talk with the oncologist again. This time we ran a full imunological workup to determine if everything is normal. If there is anything off base, he will refer us to the immunology team that cares for Nettie. I was inquiring about the administration of all of his immunizations if we don't even know if his immune system is functioning properly. So now we will know.
Nettie continues to do wonderful! She got her 3rd dose of IVIG yesterday and flew threw it with no problem. She has not been "sick" since the very first dose. She also received a treadmill to improve her skills in the area of walking with her electrical stimulation unit. It is HUGE! We are working on finding a place to put it in the house.
Well, that is it for now!
Take care and God Bless.
Renee
Sun Jul 9 23:19:53 CST 2000
Hi everyone.
Well I have tried to update twice now and neither update was implemented to the page. I do not know why.
Things are going ok here. Annette and Joshua both went to camp and enjoyed themselves very much. Annette actually is leaving for her second camp tomorrow. This is one for siblings of children who have had cancer. The first camp was for children and siblings of children with AIDS. She stayed healthy and is still going strong. This IVIG thing is doing its job for sure!!!!!!!!! I am so glad we went this route.
Joshua's MRI results regarding his sinuses wasn't very good. He has severe inflammation in ALL of the sinus cavities bilaterally and the right maxillary sinus is completely blocked. He has already been on 10 days of Augmentin and 10 days of cefzil. It was also determined that he did NOT have scabies as we had been told, but that he had an enterovirus. He had continued to develop patches of the rash even after 4 days of treatment so we did a swabbing of one of the sites and that is what grew. He is now on Claritin and 10 more days of Cefzil to see if we can't clear up these sinus before the end of the summer. If this doesn't work, we will go to an ENT for further treatment. I have now told both the oncologist and the pediatrician that I am tired of Joshua being sick all the time with no reason. We need to be more aggressive to determine the cause of these infections and to get them under control. His peliminary immunoglobulin studies were normal. However, I am asking for his subclasses to be measured to see if he has a similar disorder as Annette. That is, only one or 2 of the IGg levels are low as oppose to all of them. This would explain so much. But we won't know until we do the test.
Well anyways.
Here is hoping that this update will post.
Take care and God Bless.
Renee
Monday, June 26, 2000 at 10:56 AM (CDT)
Hi everyone!
Well, it's Monday and off to camp they went. Joshua however, almost was unable to go. On Saturday he developed a 105 temp again and this went on all night even with motrin and tylenol. He has had a "rash" or "multiple bug bites" for sometime on his belly, arms and legs. So I thought that maybe he has come down with the chicken pox and they just look different because of the stem cell transplant. So off to the doctors on Sunday we went. Luckily the pedatrician was on. Joshua's fever was from Strep throat, although he had no sore throat. And the "rash" is scabies. He caught it from a little classmate at school. I treated him last night and so, along with his antibiotic for his throat he was able to go to camp. Now we all have to be treated. I'm kinda sceeved at the whole thing, although I know it has nothing to do with cleanliness. What I don't understand, is how Peter and I did not develop any symptoms and yet we sleep in the same bed with Joshua. No one else in the house is itching and he woke up with MORE "bites" this morning, even after I treated him with the cream. He is also still coughing a bit but it is getting much better. Hopefully, the Cefzil for the strep throat will finally do the trick with the sinuses too. Well, time to go and strip the beds and steam clean the house while everyone is gone! Oh yeah! It's always a rocking time in this house. :-)
Take Care and God Bless.
Renee
Thursday, June 22, 2000 at 05:09 PM (CDT)
Hi Everyone!
I am thrilled to let you know that Joshua has had another "Clean" MRI today!!! We are so close to that 2 year mark that I can taste it! Only 2 more scans to go and then the chances of recurrence go down 100 fold for his type of tumor. So keep saying those prayers! They're working. He still has that very annoying cough and the pediatrician will call the radiology department tomorrow to see if there was any signs of sinusitis on the films. If so, he might try some injectable antibiotics to try and get rid of the infection once and for all. Otherwise, he is doing wonderful.
Nettie and Joshua go to camp next week and both are very excited about it. Nettie has started with a very bad cough this week. I am worried about sending her, but her Nuse Practioner is going too, and she is bringing along some antibiotic to be on the safe side, in case Nettie takes a turn for the worse. So that is it for now!
Take care and God Bless.
Renee
Monday, June 19, 2000 at 06:33 PM (CDT)
Hi everyone!
Thought I would do an update on the kids. Well, Joshua is back on an antibiotic for his sinuses. He has this really annoying cough (for him and anyone else in the area) that sounds like he is constantly trying to clear his throat. He has been doing it for 2 weeks now with no relief from the antibiotics or allergy meds. I tried some nebulizers and they did nothing also. If you have any experience with this or any suggestions, please let me know. Last night he and his cousin sat on the couch with a small bottle of bike chain oil and poured it in their ears. Joshua was in a great deal of discomfort and had to go to the urgent care center to have his ears flushed out. He is fine today. My neice had no problems at all, go figure.
Nettie has been complaining bitterly of an ear ache for the whole weekend, and today. Took her to the doc, nothing. He says her ears look great and have nothing to worry about. Who knows what that was all about.
Joshua's MRI is on Thursday, say a prayer for a great outcome!! He graduates from preschool tomorrow. I will be a puddle of tears by the end of the morning. They grow so fast!!!!
Well, that is all for now. Take care and God Bless.
Renee
Wednesday, June 14, 2000 at 09:18 PM (CDT)
Hi everyone!!
Well, we did it! Nettie got all of her IVIG with no reaction at all. We changed the brand and slowed it down to 4 hours instead of 2 hours of infusion and she did fine. A little bored but otherwise nothing. I am so relieved. Now we have 2 more good infusions in the clinic and then we can move to home care. I am working this summer so I wouldn't want it to be at the house anyways until September so that I can be there.
I thought I would also mention that Nettie got some new braces today. They are very different than the ones she has had in the past. They spiral around her leg and look like springs when off. She put them on and. . .STOOD UP all by herself and then took 2 STEPS ALL BY HERSELF! I started crying, it was like watching a baby take his or her first independent steps. It will only be a matter of time!!!!
I also had a very nice meeting with Dr. Souid, Joshua's oncologist. I expressed my concerns over Joshua's constant ongoing sinus infections, his croup and the high fevers, the constipation, and the seizures(?) he has had in the recent past. Dr. Souid was also a little concerned that he is gaining weight a little to fast. We would like to see him stablize in weight for a while. Today he was 61 pounds. That is a 6 pound weight gain in 3 months. So we decided on a few things. We are going to test his immune system to see if there are any gaps that occured after the transplant. We are also going to test his thyroid and pituitary function to be sure that these are not the reason for his weight gain. Joshua is going to see Dr. Souid every month for the next 6 months to monitor his health and to see how his immune system, seizures, constipation and weight fair over the course of time. I was very releived to have the support of Dr. Souid and to know that he is going to monitor him on such a personal and consistent basis. I left feeling a sense of relief instead of a sense of frustration, like I usually do. So that is all for now. Take Care and God Bless.
Renee
Monday, June 12, 2000 at 06:10 AM (CDT)
Hi everyone.
Well, we're back from NY and as most are aware via the update, we did not have the surgery. It was a highly chaotic adventure! Nettie had an asthma attack while waiting for the surgery to begin. The long and short of it, no surgery while wheezing. So we have to reschedule for September and take a 5 day course of steriods prior to the surgery day. This will help prevent any possiblity of this happening again. I am not sure what triggered the wheezing and lung congestion. She was acting absolutely fine and has been very healthy the last 3 weeks. I had no idea that she was wheezing and was so disappointed and surprised when the anesthesiologist told us that he would not allow the surgery to continue. She was also hearbroken and I felt helpless to comfort her. The good news was, that after all of her crying and her temper tantrum at the doctor, her lungs were clear by the time we made it to the ER, where they sent us for medical management of her "attack". After I had my mental meltdown and a private anxiety attack about where we would be staying for the night and what to do if she were to develop into a full blown asthma attack in some hotel room, I also calmed down. Angel Flight had found us a complementary hotel room at a Holiday Inn in Hasbrouck, NJ only 5 minutes from the airport we would be flying out of on Sat. So we went there and enjoyed ourselves with a movie on Fri and an outing to the local mall on Sat. morning.
As for Joshua, he is sick again. He has had to have prednisone for 2 days straight to keep the croup in check and his sinus are draining like crazy. He looked terrible when Peter met us at the airport. He is still coughing alot, but with the steriods he at least is sleeping which always helps his paleness. Well, gotta get the kids ready for school. Take Care and God Bless.
Renee
Friday, June 02, 2000 at 10:16 PM (CDT)
Hi everyone!
Well, there have been some changes in our plans. It seems the pediatrician neglected to send in the prior authorization forms to the insurance co. so Annette was removed from the surgery schedule. The "not-so-bright" secretary working for the doctor is going to try and reschedule the surgery for Friday the 9th. We shall see. If isn't on Friday we will have to wait until October due to a completely full summer and then school beginning. She is going to be so devestated if I have to tell her. Nettie's CT scan of her lungs is on Monday. Here's hoping that nothing serious is found but that there is an explanation for all of her pneumonias. I do have to say though, that since her IVIG infusion, she has stayed very healthy! Even though she only got half of the dose before she reacted it seems to be working!
Joshua saw the Rehab doc again on Tues.. She continues to be concerned about his symptoms and wanted an emergent MRI of his head next week. However, since I wasn't suppose to be here, we tried for the following week. The earliest the hospital could schedule it (has to still be done under general sedation) was on the 19th. His regularly scheduled scan is on the 22nd. What was the point of changing it? So, I didn't. His tone has become higher in his right foot and there is now bilateral clonus (a reaction, to a muscle being stretched quickly, that results in a rapid bouncing movement. Usually indicative of a neurological problem). So we just wait and see. Nettie's new wheelchair is finally in!!! We will pick it up on Monday and she will also have her feet casted for new braces. A lot is happening here!! :-)
Well, take care and God Bless.
Renee
Tuesday, May 30, 2000 at 07:32 AM (CDT)
Well, it has been a while since the last update. Joshua did very well on the steriods and the croup abated by the next morning. He continues to have a very stuffy nose and the fallout is green, probably a sinus infection again. I don't know why he is so susceptible to them!
Nettie had a wonderful time at an overnight Girl Scout Camp this past weekend and is feeling "ok". She started asking me to suction her nose again yesterday, but there was nothing there. Hopefully she was just a little stuffy from the damp weather at camp. We are getting things together for Nettie's trip to NYC for her back surgery. She is all excited to have the hump removed to look "sexy" in her bathing suit for her boyfriend. Who, by the way, is a counselor from Camp Good Days and Special Times, is 22 years old, and had a girlfriend at camp. But none of that deterred Annette from thinking he was her one and only, STEVE!! She has been talking about him for a year and writes a letter to him each week, although we don't have an address for him and the letters sit in the "extra" mailbox. I sure hope he plans on coming to camp this year otherwise there will be one heartbroken girl sitting there waiting for him. :-( Anyway, take Care and God Bless.
Renee
Monday, May 22, 2000 at 05:41 PM (CDT)
Hi everyone,
Well, the peace and quiet had to end soon enough.:-) Nettie became much more conjested on Friday and developed a VERY bad case of halitosis (bad breath)! This is almost always indicative of a sinus infection for her. So we called the pulmonologist that we had seen the day before to let him know that things had gotten worse and we needed the antibiotic. I am happy to report that she is feeling a whole lot better now. Still needs nasal suctioning daily but feeling a whole lot better.
Joshua on the other hand, developed a severe case of the croup again last night. We had to keep him on the nebulizer with normal saline all night to control the stridor and coughing. He was still croupy today so I took him to the doctor. He put him on Pediapred (steriod) to try and halt the problem before it gets any worse again tonight. If that dosen't work, we'll have to go to the ER for inhaled steriods. Here's hoping for a nice quiet evening.
Please say a prayer for a little girl named Katy. Her mother made Annette the most beautiful pair of socks, and although she was pronounced in great health by the docs only 3 weeks ago, she has suddenly become VERY ill. So I would like to send as many prayers her way as I can.
Take Care and God Bless.
Renee
Wednesday, May 17, 2000 at 07:13 PM (CDT)
Hi everyone!
Well today was Annette's first dose of IVIG and wouldn't you know it, the poor thing had a bad reaction. She started shaking violently and then spiked a 105 F temp. She felt awful and looked worse. So we had to stop the drug and we'll try again next month. Poor Nettie! Two days ago she received her new vaccination against the primary cause of most pnemonias and she still has a large knot in her tricep where she got the shot. Then today she had the reaction. This has been a very rough year for her so far. I think I already wrote that she is going to New York City for the corrective surgery on her back. She was suppose to receive a dose of IVIG as an inpatient in NY prior to the surgery, however, in light of the strong reaction I think it would be wise to wait and try again here. Hopefully the amount she did get will keep her a bit healthier and there will be no infections post surgery. I guess we'll just have to wait and see.
Take Care and God Bless.
Renee
Thursday, May 11, 2000 at 08:20 PM (CDT)
Hi everyone!!!
Well, no news is good news! Everyone is healthy and happy still, ahhhh. Annette is set to start her IVIG on Wednesday the 17th. Finally. She is also tentatively scheduled for the surgery on her back on in NYC on June 7th. She will be admitted on the 6th and, barring any unforseen complications, will be discharged on the 8th. We are having a difficult time getting her weight back up after her severe stomach flu on Easter. She had lost 9 pounds and has only gained back 3/4 of a pound in 3 weeks. We have added back some tube feedings to try and plump her back up a bit before her surgery. Joshua is doing very well and I have been working with the school district to be sure that his program will be everything he needs. He had another seizure today (of course we didn't see it, just the severe limp for several hours). We go back to NYC in July, and will probably have an increase in meds done at that time. But he seems no the worse for the wear and is sitting here watching WWF. I will be working this summer it seems at a local special education preschool program. I worked there last year and we hope to use the extra money to take the kids back to Florida. This time to see Universal Studios and Sea World. We'll see how the summer goes. Take Care and God Bless.
Renee
Sunday, May 07, 2000 at 10:22 PM (CDT)
Hi everyone!
I realized today that I haven't updated the page in a while. It occurred to me that this is the first time since January that I haven't had ANY health related issues to report on the kids!!!!!!!!! That is such a pleasant surprise. So this is an update on healthy children. :-) We spent all weekend outside and Joshua got quite a bit of color even with the sunblock. That's what happens when you have translucent skin:-). It was wonderful to spend such a nice weekend together. Tomorrow both Nettie and Joshua have a dentist appointment. So far so good with both children's teeth. I anticipate no problems now. We are expecting to start Nettie's IVIG on the 17th or 24th. I think the sooner the better. But if we start the 17th, she will be at camp when the next dose is due. I don't know how they will handle that situation. Wether they will give it one week early (probably better) or one week late (probably not so good an idea), who knows, I'm just the mom (HAHAHA)!! Anyways,
that is our update for now.
I want to thank EVERYONE for taking the time to stop in and check on our angels. Please sign the guestbook so we know who to thank in our prayers for your loving watchfulness. Take Care and God Bless.
Renee
Sunday, April 30, 2000 at 08:58 PM (CDT)
Hi everyone!!
Just a quick update since it has been about a week almost. Joshua was in the ER on Friday. He didn't have any school, so I took my neice, Kali, and Joshua to McDonalds playland. He looked very tired but started out strong. About 1/2 hour after we got there he stated that he had a stomach ache and then proceeded to go sheet white. He began looking more and more ill as the minutes passed so I packed them up and went home. At home he had a low grade temp, but within 1 hour it had shot straight up to 104 degrees. I called Dr. Vargas (pediatrician) and he said to bring him over. After he evaluated him, did a throat culture and found that Joshua had a very tender abdomen, he sent us to the ER. There they gave him a big dose of Motrin and sent us to the waiting room. By the time they saw him he was a whole lot better and had almost no temp or belly pain. His white count was elevated (16.9) and there were some bands, indicating a bacterial infection. So they gave him one dose of IV ceftrioxone and did an abdominal film. He was severely constipated AGAIN. So home we came. He is doing just fine now. We have started giving him a daily dose of mineral oil to help the situation down below.
Nettie has been doing fine since Easter. We haven't started the IVIG yet, since the clinic hasn't called yet. But I anticipate it will be this week or early next week. She is going to be featured this month on the Make a Child Smile page. She is going to love all of the mail!!!!! :-) She deserves it after her year so far.
Well, take care and God Bless.
Renee
Tuesday, April 25, 2000 at 01:28 PM (CDT)
Hi everyone,
Hope that you had a wonderful Easter and I know the parents are happy that school back in session! :-) Nettie was very sick on Easter with vomiting and diarreha. She just laid there while we ate our big dinner and then fell asleep on the bathroom floor in between bouts. She is doing much better today and actually went to school. She has lost 9 1/2 pounds from this!! Unbelievable. The docs also called from her clinic and after discussing her case, yet again, they want to start her on some IV medications that may help her fight off some of these infections. It is called IVIG (Intravenous Immunoglobulin). It is suppose to replace the antibodies her body does not produce on its own. This is a problem she was born with despite her HIV infection, so she would still be just as sick even if she didn't have AIDS. Very frustrating for her and us. Hopefully these once a month infusions will help to bolster her immune system into fighting a bit more and she will go longer in between the illnesses. They are also going to CT scan her lungs to try and locate a pocket of infection. It is thought that despite the antibiotics, a small pouch of infection is still lying in her right lung causing all of the repeat pneumonias in that area. I have no idea what they will do if they find one. Forgot to ask.
I seem to have gotten what Annette had over the weekend and now I am a bit miserable. So I will go to sleep now. Take care and God Bless.
Renee
Thursday, April 20, 2000 at 06:50 AM (CDT)
Hi all,
I am happy to report that all is calm at this time in the house. No one is currently ill and Nettie is feeling 100% better since Tuesday. Her blood cultures have come back negative and her lungs sound a bit better each day. On Monday she was still looking very ill and I was getting worried that the antibiotic wasn't working. But is seems that she had gotten pretty dehydrated and so we flooded her with water in her tube and she started to perk right up after a few hours. They have retested her immune system yesterday to see where we stand. But the results take a long time to return so there will be nothing to report hopefully for a while.
Joshua is doing great right now. We have still seen a few signs that he had a seizure, but we still have never actually witnessed one yet. We just see the limp afterwards. But he certianly isn't any worse for the wear!!
And that is it for now. I like a lull once in a while :-)!!!! So off to the store for more milk. Take Care and God Bless.
Renee
Saturday, April 15, 2000 at 10:14 PM (CDT)
Hi everyone. It has been a while since the last update and a few things have happened in the mean time. Annette was admitted last night to the hospital for a high fever due to pnemonia. Today she was discharged but we were told that her blood culture was positive and that we need to keep a close eye on her to be sure the antibiotic is working. She is pretty uncomfortable from the pnemonia, but otherwise appears to be doing just fine. Peter has fully recovered from his elbow surgery. Joshua has been doing very well, and has tolerated the recent increase in his Tegretol, to the full dosage he should be on. The only real thing we are seeing is that he is much moodier recently. It is a frequent side-effect of this medication. I hope it is only temporary because it is causing some difficulties in the classroom setting. We shall have to wait and see. That is it for now. Hope all is well with you and your families. Take Care and God Bless.
Renee
Tuesday, April 04, 2000 at 03:16 PM (CDT)
Hi everyone!
Well, we're moving right along here in Syracuse. I can't believe that it is April already!!!!! Time is just flying along. Joshua is now on an antibiotic for another sinus infection and had the croup again. He also appears to have had another seizure, because he has been limping again and it's the right leg also. However, I am taking him back to the doctor tomorrow because he is still limping and it is now 3 days since he started. There may be something else going on that we aren't seeing. Who knows at this point??? Nettie is feeling great and just had a nice checkup with the orthopedic surgeon. He thinks her hips look great and that she is doing very well. Looks like no more surgery will be needed on her hips in her lifetime. Yeahhhhhh!!! She was very pleased with that news too. She is going to get new braces for her ankles and some canes to use for walking. This will be a very nice improvement for her and we are very proud of her. Well, that's it, take care and God Bless.
Renee
Tuesday, March 28, 2000 at 01:44 PM (CST)
Hi everyone! Well, we have made it through another MRI!! This time we had one of the brain and spine done, just to be on the safe side. The peliminary results are in and all looks GOOD! They are just waiting to compare the scans against the old ones to be sure. Joshua has started his tegretol and has had no side effects at all.
Annette is feeling much better now with the antibiotic on board. Just spoke with her nurse practitioner and told her that I do not want to let Annette continue to suffer from sinus infection after sinus infection as well as have multiple pnemonias again. It is not fair to her to suffer like that. So she is going to "talk" to the doctors about it and let me know what they think.
So that is all for now! Take care and God Bless.
Renee
Saturday, March 25, 2000 at 09:21 PM (CST)
It sure has been an eventful week!! We got home from NYC on Wed. nite so that Joshua could see Dr. Souid (oncologist) on Thursday for his physical and history, required for his MRI on Monday. Annette woke up with a bad headache, never a good sign with her, and a low grade temp that she had while I was in NYC. We took her into the doctors at the same time as Joshua. They diagnosed her with a viral infection. The next day her temp had gone up even higher, and she was acting miserable. So I took her to the pediatrician. He felt strongly that she had pnemonia and put her on Augmentin. She is doing great now, just in time for her Birthday Party!!! She had a very nice time with her friends at a restaurant called the spagehti warehouse. They have a children's theater troupe come in every Saturday so the kids saw an amusing rendition of Jack and the Bean Stalk and then had a nice lunch. I was so pleased to see her feeling better!!! But of course she had to wait for me to get home to become ill in the first place :-). Well that's it, gotta go!
Take care and God Bless.
Renee
Tuesday, March 21, 2000 at 06:35 PM (CST)
Hi everyone. Well, we made it to our EEG yesterday. It was a very long night and he was truly, "sleep deprived" by 7:30 at the time of the test. Today we had our cardiology appointment. We found out that he has a perfectly normal heart and venous system! His EEG however, was not normal. He is having seizure activity in his right frontal lobe (where the tumor was). He is have so much at this time that the doctor was suprised that Joshua is not showing a lot more activity outside of his brain. So we will start Tegretol when we get home. This will hopefully prevent anymore obvious seizures and slow down the ones in his brain. We will return to NYC every 3-4 months to see Dr. Cargan for monitoring and another EEG if necessary. So, at least we have our answers. That was all we were looking for. Now we can address the problem and move on with life. The doctor here in NY has also agreed to do the surgery on Annette. So we will come back down and have that done in a month or two. That's all for now. It looks like we will be coming home on Thursday, instead of tomorrow, because the Corporate Angels didn't have a flight yet. Take Care and God Bless.
Renee
Saturday, March 18, 2000 at 07:42 PM (CST)
Well, yesterday was suppose to be the day that we did the EEG. It was a very unusual day to say the least. First of all, I looked and looked to see if there were any messages from the hospital to say wether or not they were successful in getting the appointment set up for Friday. No message. I kept him up until 10 pm, just in case. At 4:20 am, we get a wake up call letting us know that there will be a ride picking us up to go to the hospital in New Jersey at 5:00 AM. Obviously we are totally suprised, but up we go, and there is our ride. An AMBULANCE!! The social worker called and had an ambulance drive us to the hospital, we arrive at 5:45 and find out that the EEG dosen't open until 6:30. So we hang out in the ER waiting room with the ambulance people. Then we go to the EEG and find out that Joshua was suppose to be awake from 12:00 AM on and he was not prepared for the test. He was TOTALLY awake at the time. We page the doctor to find out what he wants done, no answer. We wait until 9:30 and then call for a ride homw with the intentions of coming back in on Monday. We wait until 11:30 for the AMBULANCE to return to get us. We were at the hospital for 6 hours and did nothing. VERY frustrating. I plan on getting to the house to find out how I did not get a message, only to find the message carasoul on a different table with my 2 messages in it. They told about the test, the ride, the times and the directions. So, I was the one that screwed the whole thing up. Amazing! So we will do it on Monday. He can not sleep after midnight on Sunday and the test is at 7:00. The ride, an ambulette this time, will pick us up at 5:00 again. So, wish me luck that I am able to stay awake!! I'm not worried about him :-)
Take Care and God Bless.
Renee
Thursday, March 16, 2000 at 05:35 PM (CST)
We saw the neurologist today. He was very thorough and very good at explaining everything! He even stood there and went over 3 sets of MRI's with me to explain all of the changes that Joshua has had since the day he was diagnosed. I was in awe of all of the things that were wrong and that are now right. He was very, very impressed with Joshua and felt that at this time he is not seeing any motor issues that concern him. He does want an EEG done as soon as possible and NOT done with any sedation. To do this we have to do a "sleep depervation EEG". I am suppose to keep him awake as long as physically possible at night and then wake him early in the morning so he will be exhausted by time we arrive at the test. He has to go to New Jersey for this test, Holy Name Hospital. The neurologist feels that he is probably having seizures and not TIA's, but that until he sees Dr. Zucker, the cardiologist, this can not be ruled out. So we now await this wonderful EEG, so we will both be sleep deprived and wandering around New Jersey, that should be a sight to behold!!! Take care and God Bless.
Renee
Wednesday, March 15, 2000 at 02:39 PM (CST)
hey everyone. Well, we're here in New York City at the Ronald Mcdonald House. Arrived on time yesterday. Joshua is enjoying his visit so far. Today we went to see Fantasia 2000 at the IMAX theater. He loved it!!!!! Tomorrow is our visit with the neurologist, and Friday will probably be an MRI. He is still batteling a bad cold and took a 1 1/2 hr nap today while in the stroller. I am pretty sure he has an ear infection because he cried when we took out his hearing aids, I also won't be suprised if he has the beginning of bronchitis and sinuses again, he is so conjested. Hope the neurologist is ready for the multiple issues he is about to see :-))) Even though they are not in his field! He's going to work for that $400.00 fee he gets on the first visit, that's for sure!!! Hahahah Take care and I'll update you tomorrow after the appointment.
Renee
Sunday, March 12, 2000 at 09:58 PM (CST)
Well, we're off to NYC on Tues. What started off as a 3 day trip has progressed into a 9 day stay thus far. Joshua will be seeing a cardiologist and neurologist. The cardiologist is ordering an EKG, an echo, and an MRI of his chest. The neurologist may want an MRI of the head and EEG. So we shall see if we can fit all of this in in our time there. We are staying at the Ronald McDonald House. He also has croup again, still don't understand why he has it so often.
As for Nettie, she is doing great. She is very upset that I will be gone for so long. I will miss her and Peter terribly too. I am showing pictures of her to a pediatric plastic surgeon at Babies Hospital also. He is fairly positive he can help her. She is already getting nervous about "surgery"! She is such a worry wort!! LOL Anyways, wish me luck in NY and fill you in when I'm back!!
Take care and God bless!
Renee
Sunday, March 05, 2000 at 08:40 PM (CST)
Hello everyone,
It's been awhile since our last update. Well, it seems things are finally moving in the right direction with Joshua and we are now just waiting for finalization of his appointment in NYC. The doctors were taking to long to make the referrals and so I went about making the calls myself. Since I have more experience with Babies and Children's Hospital of NYC, and that was where Joshua was born, I figured that was the best place to go. A Dr. Cargan is going to see him in the neuro clinic and we are going to stay at the Ronald McDonald House. I am anticipating a possible stay of a couple of days, as I am assuming that they will be running some tests and that will take time to orchestrate and complete. Hopefully now we will have some answers. He is also due to have his MRI on the 27th of this month. It is always a nerve wrecking time when it is time for the MRI. But we have no reason to think anything will be different on this one.
Nettie is likewise doing good at this time. I have begun to look into finding a possible treatment for Annette's "buffalo hump". It is an unfortunate side effect of the medications she has to take for her HIV. It's called Lipodystrophy. It causes fat to leave the legs and arms and causes a large increase in fat in the stomach area and at the base of the skull. She sometimes looks like she has a hunchback. So we are contacting pediatric plastic surgeons to see if liposuction of the fat is a possibility. The doctors here in Syracuse are against it, but then again, they have been against everything we have wanted to do. :-) So upwards and onwards I say!
Well, that's it for now. Take care and God Bless!
Renee
Sunday, March 05, 2000 at 08:40 PM (CST)
Hello everyone,
It's been awhile since our last update. Well, it seems things are finally moving in the right direction with Joshua and we are now just waiting for finalization of his appointment in NYC. The doctors were taking to long to make the referrals and so I went about making the calls myself. Since I have more experience with Babies and Children's Hospital of NYC, and that was where Joshua was born, I figured that was the best place to go. A Dr. Cargan is going to see him in the neuro clinic and we are going to stay at the Ronald McDonald House. I am anticipating a possible stay of a couple of days, as I am assuming that they will be running some tests and that will take time to orchestrate and complete. Hopefully now we will have some answers. He is also due to have his MRI on the 27th of this month. It is always a nerve wrecking time when it is time for the MRI. But we have no reason to think anything will be different on this one.
Nettie is likewise doing good at this time. I have begun to look into finding a possible treatment for Annette's "buffalo hump". It is an unfortunate side effect of the medications she has to take for her HIV. It's called Lipodystrophy. It causes fat to leave the legs and arms and causes a large increase in fat in the stomach area and at the base of the skull. She sometimes looks like she has a hunchback. So we are contacting pediatric plastic surgeons to see if liposuction of the fat is a possibility. The doctors here in Syracuse are against it, but then again, they have been against everything we have wanted to do. :-) So upwards and onwards I say!
Well, that's it for now. Take care and God Bless!
Renee
Wednesday, February 23, 2000 at 03:15 PM (CST)
Hi everyone!
Hope all has been going well with you and the families. We are doing well here in Syracuse. Nettie is finishing up her antibiotic and Joshua just started one. They both have sinusitis. Joshua had a bad case of the croup the other night but is doing well now except the stuffy nose and loose cough.
Joshua was seen yesterday by a Dr. of Rehabilitation Medicine. Her name was Dr. Turk and she expressed great concern over Joshua's "episodes" of slurred speech and limping. She recommended that we get to CHOP (Children's hospital of Philidelphia as soon as possible. He is now showing weakness on the right side of his body which is different than several months ago, when it was the left side. His tumor was on the right side so you would expect problems on the left side. She stated that the fact he has weakness on the right side now, probably means that he has already suffered some sort of insult to the left side of his brain. SCARY STUFF!! So we called the Pedicatrician and he is making the referrals this week and hopefully we will be on our way to answers within a week or two.
Nettie will be getting a new kind of vaccination to try and prevent her from developing any more pnemonias. It's brand new and we are just waiting for it to hit the market.
Well, that's about it. Take care and God Bless.
Renee
Friday, February 11, 2000 at 09:23 AM (CST)
Hi Everyone!
Just thought I would update the page for you. Following Joshua's most recent "episode" his peditrician is going to request further follow-up from the neurologist and neurosurgon here in Syracuse. However, they are at a loss or want some invasive tests, Dr. Vargas asked that we consider going to Children's Hospital of Philadelphia for further evaluation. He is not comfortable waiting any longer and wants an answer as to what these episodes are and if they are putting Joshua at higher risk of neurological complications, like a stroke. So of course we said YES! Now we are just waiting and seeing.
As for Nettie, her Pulmonologist also agrees with the diagnosis, I have so thoroughly researched, and is calling the Immunology team itself to put her back on the IV medication called IVIG. This will hopefully help with her asthma, chest congestion and sinusitis that she has been dealing with recently. She is now on 6 weeks of antibiotics for her sinuses.
Well, that's it for now! Take care and God Bless.
Renee
Monday, February 07, 2000 at 01:37 PM (CST)
Hi everyone!
Well, today was Breanna's funeral. It was very beautiful and sad. I had to do a reading, "Bless the Children" Mark 10:1-16. I made it through without crying but lost it in the pew.
The kids are doing well. Joshua fell and hit his cheek and eye hard on Saturday. It stayed red and swelled abit throughout the day. Around 2 o'clock he began to drool and his speech was slightly slurred. In addition, about 1/2 hour later, he began to limp. For those who do not know, Joshua has had a couple of "episodes" similar to these but has never been diagnosised. His pediatrician feels that they are likely "mini" strokes, I agree, but Peter does not. He feels they are just like "mini" concussions, similar to football players who have taken frequent hits to the head. He feels that because of all of the trauma from the surgery and tumor and chemo he is prone to suffering these "mini" concussions whenever he hits his head hard. I can neither support nor dismiss this concept. The dilemma lies in wether or not there is something we can do to stop these "episodes" or wether he will have to live with them. I do not know the answer. The doctor will probably schedule an ultrasound of his chest arteries and veins soon to be sure there are no clots in there. Other than that, nothing more can be done at this time.
Well, that is it for now.
Take care and God Bless!
Friday, February 04, 2000 at 08:31 AM (CST)
It is with a very heavy heart that I share with those that know of this page, that one of earth's angels has moved on to be a heavenly angel. Breanna was diagnosed 2 months after Joshua with neuroblastoma, and we have been honored to become very close with Breanna and her parents, Craig and Colene. For those who never had the good fortune of meeting Breanna and those who have, please say a prayer tonight for Craig and Colene as they move through the next difficult part of their lives. Her web page is in the links below, feel free to visit and sign their guest book. I am sure they would appreciate the support.
Thank you and God Bless.
Renee
Tuesday, February 01, 2000 at 04:29 PM (CST)
Well hello again everyone!! It is snowing outside very, very hard. YUCK! Today has been an uneventful day with the exception of a doctors visit with Annette. She saw Dr. Vargas, her pediatrician, today and he was very insightful and supportive of something that has bothered me for a long time. For those who are not entirely familiar with Annette and her medical history, well, let's just say it is a long and complicated one. To long and complicated to believe that JUST her HIV is responsible for it all. So I have consistently asked the Dr's in NYC and Syracuse to determine if she has an underlying immune deficiency. To make a long story short, I stumbled upon several special tests that had been run and it showed a very low level of two antibodies. Her doctors at the hospital were not impressed nor concerned. However, Dr. Vargas confirmed with me that he suspects this deficiency is the culprit of all of her infections and that we may have to approach her care in a different manner. Chalk one up for Mom! So now he will be the one to argue with the other docs and I will just wait and see. Feels good to be right once in a while, dosn't it!? So that is the new update for the day. Take Care and God Bless
With Love,
Renee, Peter, Annette and Joshua
Monday, January 31, 2000 at 07:14 PM (CST)
Hi Everyone!! Well the verdict is in on Joshua's renal scan and. . .all is NORMAL! Not a word frequently used with either of our 2 angels when it comes to scans and stuff. So we sighed a sigh of relief. Annette however, had her first "real" asthma attack today on the bus on the way to school. Scared her nurse pretty bad but she did fine after her nebulizer. Strange though because she hasn't been on preventative meds in years and had no "real" attacks, just wheezing when sick. But now she is on a new medication daily to prevent the wheezing and she has an attack! Go figure. So we will see the pediatrician tomorrow to see if she has anything brewing in those annoying lungs of hers.
A request was made to define some of the lingo I used in the intro, I would be happy to! I will include a short list at the end of the intro. God Bless and Take Care Everyone!!!
Definitions:
Renal scan: a special set of pictures are taken of the kidney and bladder using a small amount of radioactive material. It tells how well the kidneys are working.
nebulizer: a small machine that administers medication in a mist form so it can be inhaled.
Saturday, January 29, 2000 at 07:58 AM (CST)
Well, this is our first entry. For those who do not know us well (practically everyone I guess (-:) our house always has some minor situation or two. Overall Both kids are doing GREAT! Joshua and Nettie have stuffy noses and by the looks of the "fallout" it is probably sinuses again. Joshua had a renal scan done yesterday. We are trying to determine if he is having any kidney dysfunction at this time. He had a uretal reimplation done when he was 3 months old. Recently had was found upon renal ultrasound to have a cystic structure in his right kidney and reflux was present. A CT scan ruled out the chance that it was a tumor (YEAH!) So now we just need to know if his kidney function in that kidney is reduced. We'll have to wait until Monday to find out though. Well, I guess that is it.
God Bless and Take Care of Yourselves!!!
Renee and Peter Curkendall
Friday, January 28, 2000 at 05:42 PM (CST)
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