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Saturday, December 30, 2006 3:45 PM CST

Wow, has it really been that long since I last updated??? I sincerely apologize for not getting around to this sooner!!

Things around here have been busy, busy, busy. Let's see where to even begin?

Both boys had their GI appts in mid-Dec and that was not quite as same-ol same-ol as I expected. Nicholas had lost about 2 lbs in a matter of days when taken off the Reglan and also when he became sick with a sinus inf at that same time. We fought hard to get it back on and I thought we were doing pretty well, but he was still down in weight when we saw the GI this time from the weight he was last time. The GI, needless to say, was not happy. We had to bump up the night feeds, which we have not had to do in a LONG time, to get the weight back on. His fat reserve was pretty much nonexistant...and for a kid who is tiny to begin with and can drop weight at the drop of a hat while sick, it is not a good thing. He responded really well to the increase in feeds and put on nicely and we have since dropped back down to the usual. We went over the boys' emptying scan (GES) results and they were not quite what we had hoped either. Normal half-empty time (the time it takes for 1/2 the food in the stomach to leave) is < 60 min. Nicholas' was 181 min and Nathan's was 108. The GI has decided not to treat Nathan's for the time being as he is concerned with the possible neurological side effects the Reglan can have and since Nathan has the Mito and possible neuro issues anyways, he is hesitant to risk trying any meds out until after his MRI to see how things look. Nicholas' however, is getting to the severe range again. At his worst, the half-empty time was 215, which prompted surgical correction. So, 181 is not too far off the mark from that. Sadly, there is nothing we can do for him besides treat with meds. We have upped his Reglan dose wise and also added in an extra dose per day to see if this will help. I am upset that we did this surgery with the thought that this would be a long term solution for him and instead, bought ourselves side effects like dumping symdrome and ended pretty much right back at square 1 anyways within 3 short years of the procedure. Ah well...what can ya do? Nicholas had to have a nutrition panel run on his blood to make sure he is adequately nourished (because of the weight loss) and Nathan had a celiac panel run, since he has not had that done up til now. Those results are still pending. Other than the unexpected news at the appt and the horror of blood draws, the rest of the day was pretty nice. We had a yummy lunch and did some shopping at the outlet stores in San Marcos. Then we headed back early and stopped at one of our favorite little places on the way home to eat dinner.

We have been having potty training boot camp around here since the news came that Nicholas would be able to start preschool in Jan. I am pleased to report that Nicholas is about 99% poopoo trained...this with the exception of a blowout he had from a dumping episode. I felt for him as by the time he realized it was coming, it was too late (because it came on so fast). Poor kid. Other than that, he has been doing great. He wears training undies and plastic pants during the day while we are home and has stayed dry...way yo go my little man! It is a work in progress, but he has done wonderfully thus far and I could not be prouder! School starts for him Jan 4 and I am so nervous. I know he will be fine and LOVE school, but at the same time, I have been with him every single day except 1 since he was born, and this is going to be a huge adjustment for me letting him go and giving him some independence from me. It will be so good for the both of us, but I am pretty sure I am not going to be able to see this until he goes and I know he has had a good time and likes it.

Christmas was wonderful here. Doug took a few days off work and we had such a good time! Christmas eve was spent with my parents opening gifts, playing, eating our big Christmas dinner, and then heading out to church for the Children's service. Once we returned home, we ate grillec cheese. started a tradition of opening one family gift of new PJ's, watched Polar Express, laid out Santa's cookies and juicebox, threw the reindeer food into the yard, read the Christmas story and Twas the Night before Christmas, and then put 2 tired little boys to bed. Doug and I had bought them a mini trampoline with a jumping bar for them as a therapy gift and we were up for 2.5 hrs trying to put it together. Then we were up again at 8 for Santa gifts, breakfast, and family gifts before heading out to my inlaws house to celebrate with them and stay overnight. I swear these are 2 spoiled little boys and they are so enjoying all the wonderful presents they got! The next day, we all headed out for some shopping and picked up a few things here and there. I spent my much appreciated Liz Claiborne outlet gift cards and have some beautiful new clothes to wear.

Today, the family has been busy cleaning and culling toys to make room for the new ones and we have set aside some things to sent to my parents' house, 2 bags (1 big, 1 small) for the church nursery, 2 big bags for Texas Children's Hospital for their playrooms (which Nicholas has LOVED to use while inpatient), and another bag to donate to our local charity resale shop. We already sent some things up to my inlaws back in Nov around Nicholas' birthday. I think we did pretty well and both boys seemed to be ok with the toys that are going to be sent on. Most are baby toys and rattles, teethers, and such, but some are older aged toys that the boys hardly used and I am so happy some other little children will be able to get some benefit from them. Both boys had their rooms/closets overhauled as well today and at some point, we will be doing our bedroom as well. It has been a lot of hard work, but it will be so worth it in the end.

January is going to be a big month for many reasons. Nicholas starts school and will be getting his SMO's. Nathan has an MRI with Spectroscopy and a spinal tap and he also has an appt for a equipment evaluation for something along the lines of a special needs stroller with bus tie downs for him for when he goes to preschool as the PT feels he will likely qualify for PPCD. That should be interesting.

Guess that is about all the news we have for now. I am going to try to be better about updating...I promise. It has just been a whirlwind here recently with the holidays and Nathan fighting a cold and I am coming down with something sinusy and all the added excitement. When we have had a chance to lay low and relax, we have jumped on it since those days seem to be few and far between lately.

I hope that you all had a wonderful holiday with friends and family and are looking forward to a fabulous and amazing 2007. I know we sure are! We are SO eager to move forwards with our lives and get all this current testing and diagnosing behind us once and for all. Thanks to all who have kept us in thought and prayer throughout this past year and those who continue to do so for us. We appreciate you more than you realize. Thanks also to those who have taken the time to sign the guestbook to let us know you were here and thinking of us. It is much appreciated as well. Take care, God bless, and have a much blessed 2007!


Melody

Wednesday, December 13, 2006 10:38 PM CST

Whew...where to begin, where to begin? I have been wanting to update, but then I think well, maybe I should wait until we have X appt tomorrow and then by the time I know it, it is time for another appt and I say the same thing. Here is the latest...

Ding Dong...the stitches are gone!!!

We had to go into the peds Sat morning since they had no appts Fri and Mon was too long to wait. Boy, the trauma of getting them in has made Nicholas super sensitive. I am sure the fact that he was held down while he was stitched by a male nurse that looked straight out of WWF did not help...he was big, burly, and muscular with long curly hair and a full mustache and beard. I think that would have scared me too! Poor Nicholas cried so bad for a simple immuno blood draw Fri, which is unusual for him since he has had that so much and he was so excited to get the stitches out until the nurse showed up with a pair of scissors in her hand. At least it was quick, but it did hurt a little since it is healing so well, the stitches were embedded in a scab. He was a trooper tho and they are out now! Woohoo!

Nicholas had his VCUG Mon and even tho it was sedated, I was horrified at how awful it was. He cried like I have never heard before and anxiety was through the roof. They cathed him and emptied his bladder, then filled his bladder with contrast to see how much it would hold and to look at anatomy and check for kidney reflux. He refused to urinate for the test so they could get the "voiding" part on film and that complicated things. He finally went, thank goodness but was indignant that they would not let him use his diaper to urinate in. He was in terrible pain after they pulled the catheter out and was afraid to urinate because of the pain. When he did go again after the test, he was urinating blood and started screaming out in pain every time he had the urge to go after that. He held it in for a good 8 solid hrs before we finally bolused a ton of water and got him to go. Before that, nothing we tried worked. When he woke Tues morning, it was more of the same and he did not stop having issues with the urinating until late yesterday afternoon. I am exhausted from hearing him fuss and it was heartbraking to see him in such pain. All we know after all that is that he has no kidney reflux (which we already knew...grrr) and he can hold it in for 8 hrs straight. I am frustrated about this and have a lot of angry thoughts, but I am not going to get myself started on that.

Nicholas had his appt with Physical Medicine at TCH today for a 2nd opinion about his ankles. His therapist was not happy with the ortho's opinion about it last summer and asked that we go to see someone downtown. So, after all this wait, the appt was today. She immediately agreed after seeing how his flat feet and poor muscle tone was making him walk on the insides of his ankles and making his knees hyperextend backwards, that Nicholas needed something and thinks he would be a good candidate for SMO's. She was not happy with his knee hyperextention, but said that, with how well he is moving right now, she is more afraid of overbracing. Apparently, the more support you give, the more dependent they can become on it and use it as a crutch and not develop as well because of it, so she feels it is better to go with the shorter braces and hope that the knee sutiation will improve with further therapy, strengthening, and support. She did say tho, that she was REALLY surprised and happy to see how well he has progressed with the amt of tone he has in his legs. I guess the tone must not be great, but I am glad he is doing that well with what he does have. So, we have an appt now with the orthotics place to get the casting done. I just hope Nicholas does ok with having to wear them. She and I also talked about how nobody is really following Nathan for his as the Ortho (who I am not fond of) just wrote the rx for them, but never wanted any follow up and so the neuro wrote the rx for them this last time as they were getting too small and he needed them soon. I thought it would be good to have someone to follow him for that who knows the mechanics of the legs and can tell us how he is progressing with the bracing, so she said she would be glad to take him on as well and will see them both when Nicholas comes back in 7 mos for his follow up. Since he just got the new AFO's last month, she did not see the need to come in for him any sooner since he is not likely to outgrow them before then. I am glad as she was really nice and I liked her a lot. Not sure how we will pay for these as they are not covered by ins and he does not have a dx to be covered by MDA, but since he needs them, we will figure something out.

Now for some good news...

I am so excited I can hardly stand it! Nicholas has not been able to go to preschool in the past because of his immune deficiency. He finally got the drs clearance to go in Aug and by then it was too late for him to get a spot, so he has been on a waiting list at this one local church since then but nothing has come open. So, Doug gets a call this morning that they have an opening for the spring and would we like to enroll Nicholas. Well, in theory yes, but in reality, we have no extra money and would never be able to pay tuition every month. We barely make the bills we already have right now, so it would never work. Doug explained that and told her that maybe we would try again in the fall and hopefully we could pay then and thanks for the spot anyways, but they could pass it along to someone else on the list. She said she needed to check on something and could she call him back? So he said yes. Well, about 30 min later, the director herself called him and said not to worry about the tuition and that they were offering him a scholarship so he could attend for free and would we still like to have the spot for him, so we took it and we go in tomorrow morning to meet his teachers and fill out the paperwork. He will start in Jan!! I cannot believe how blessed we are by this place. Nicholas has SO needed this and we just could not afford to send him. The even better news is that it is on the days opposite his 2 therapies and will allow us to be home after dropping him off just in time for Nathan's therapies so we do not have to compete with Nicholas or deal with Nathan being distracted during therapy time. I cannot believe how perfectly this is fitting into the schedule for us! It was like it was meant to be. I was just so overwhelmed and speechless until I heard this news...

I got a call earlier today from the Immuno fellow and the boys' bloodwork results were in and...(drumroll here please!)...

Nicholas had IgG go from 495 to 566, so almost normal since low normal is 592. His IgA was well within normal range at 40 (norm 33) and still low on IgM from 21 to 22 (not sure what normal was for that). I am thrilled as his IgA started out as undetectable on the first test. His titers were overall ok... Tetanus was awesome at a whopping 4.5 (protective is 0.15) and his pneumos were a mixed bag, half the same, half a bit lower, but one was higher and they think this was the bug they were sick with a few wks ago. If that is the case, that is GREAT news since it means his body made more antibodies to the bug they were sick with then he had before he was sick.

Nathan's IgG was almost normal at 507 (norm 533), his IgA well above normal at 36 (norm 24) and his IgM was still low and had gotten lower at 20 (norm 26). His HIB was a whoppingly HUGE 9 (protective is 1) and Tetanus was ok at 1.4 (protective 0.15). Pneumo was not as great...the same for some and lower for some. He has lost protective immunity to about half, but he said he was not terribly concerned and to see how he does without a revax and if he seems to be getting sick more, we can revax then. Otherwise, he can wait until his 2 yr well check to get his next dose then.

As far as Nicholas goes, I asked him would he be ok for preschool since we got the call this morning and he said to expect him to get sick a lot at first, especially since he starts in Jan. And, if we notice hs is sick an excessive amt or cannot get over bugs or those kinds of issues, we may need to reconsider it and he may need to be pulled, but this would be a good "test" to see how he does. I hope he will be ok...I think he will be. I am so excited!

We will need to go back in 6 mos. He said we aren't out of the woods yet, but we are getting close to the edge! If we can get everything to be in the normal ranges at some point, we will be able to be discharged to a consult only basis at that time! Boy, wouldn't that be nice! So, it looks like THI may be the correct dx for us after all. Overall I am very encouraged!

So there you have it! Overall, not a bad bag of tricks. Fri we go to the GI in San Antonio and will be talking A LOT over this last draft of the ins appeal letter and we will see what can be done about it. I am not expecting this appt to be overly exciting...it should be just same ol same ol for us. Then we can enjoy the rest of the day.

Hope this finds you all well. Please continue to keep our MN friends in your prayers as they are inpatient and have a long road ahead to get their daighter's pain under control and get her back on track. Thanks to all who continue to visit us and think if us..we sure appreciate it. Take care, know we think of and appreciate you all, and God bless each and every one of you!


Melody

Thursday, November 30, 2006 4:43 PM CST

Update - Sat, Dec 2

So today we were supposed to meet up with a friend and her son at the mall where her parents live today and then go see a small light parade after that. Things never seem to go like they are supposed to...

We decided to make one last pit stop at Yankee Candle before we left to go eat before the parade. The kids were smelling candles in there and my friend was paying. Doug and I start rounding up the troops and getting the stroller turned around and Nicholas pranced to the door of the store. Seconds later I heard what sounded like a bowling ball being dropped on the floor and then an ungodly scream from my child. I ran to see what had happened and found my poor Nicholas standing there screaming and redfaced and blood pouring down his face. Somehow he had tripped and fallen headfirst into the railing (we were on the 2nd floor) and split a HUGE gash into his scalp. It was a 1-1.5 in gash and so deep you could see his skull where it was gaping open. :( I screamed for Doug to get me some baby wipes and as soon as I wiped the blood off I knew it was bad enough for the hosp. Meanwhile everyone was freaking out around us. The ladies in the store called 911 unbeknownst to us (mall store policy I think) and we were trying to stop the bleeding while Nicholas screamed and screamed. Finally we got him calmed and the paramedics showed up and by then the bleeding had almost stopped. Everyone outside the store was stopping to stare like we were a circus side show and mall security had to come and stand blocking the window and make people move on. We knew it was not bad enough for an ambulance ride, but the paramedics wanted to bandage it up before we drove the 1 block to the hosp. We went to the ambulance and all the way, people were staring and sucking in their breath when they saw his head...ugh. He got bandaged up and got to pick a toy in the ambulance, but adamently refused to ride it, which was fine with us since we knew it would have cost a fortune. M friend and her mom decided to take Nathan to the parade with them while we went to the hosp. We get to the hosp and waited an hour to be triaged!! Then another hour to get into a room! Finally by this time, they had watched the parade AND taken Nathan to eat, so Doug went to go get him and bring him back. Once we got a room, we were stitched up in a matter of 30 min. The nurse showed up with a sponge in her hand and that was it for Nicholas...he sceamed and screamed until she was done stitching. He had 6 stitches and needed a head CT scan to rule out a skull fracture after a line the NP saw inside the wound made her suspicious. That, thank goodness, came back normal and Nicholas was impressed to see what his eyeballs looked like on the screen. We were finally d/c with 6 stitches and a concussion. Poor baby missed the parade and we only got to spend about 1.5 hrs with our friends before all the excitement. Thankfully, she and her mom offered to take Nathan with them to the parade and also to eat afterwards, so he enjoyed himself and we did not have to worry about him being bored while we were at the ER. Doug went and got him and arrived back right when they were stitching Nicholas up. Nicholas was just devastated to miss the parade, dinner, and playing with his friend. I felt terrible for him. Thankfully, he is sleeping now and we will be checking him before we hit the hay for the night. I am just glad he is going to be ok. I just wish I could get the sound of his head hitting out of my head...what a sickening sound. :( And the screaming when the nurse came in...I think that had to be the worst I have heard from him yet. What a day... :(


Thursday, November 30, 2006 4:43 PM CST


Geez, it has been weeks since we got the emptying scans done on the boys and only just got the results today. There was difficulty sending it from TCH to San Antonio to our GI and then the holiday thrown in there...ugh.

Nicholas' showed a moderate delay. This is so frustrating since he had a pyloroplasty and this was supposed to help with this issue. The GI told us that unfortunately if the motility is poor, the pyloroplasty will not fix that...it can help and make it a little better, but won't be able to make it "normal". So, poor baby has to go back on the Reglan. I hate that he has to take this, but I am glad he is going back on it as his stooling has been terrible since being off and he had lost weight initially after stopping it (from 31 lbs 6 oz down to 29 lbs 12.5 oz) and is finally slowly putting back on. He is up to 30 lbs 9.5 oz.

Nathan has a delay too, but not quite as bad as Nicholas'. His is more in the slight catagory and the GI said to leave him as is for the time being, as with the Mito and posible neuro side effects he could have, he is not comfortable risking putting him on Reglan right now. We go to see him Dec 15, so we will be discussing further options at that time and will decide if it is bad enough to need medical intervention or not. At this time, he is only on the Miralax to help with stooling and that is all as far as motility is concerned.

So, right now, we are just sticking with the same ol same ol and waiting until our appt on the 15th to see where we go from here. I am going to be asking for copies of the reports for our records since all we got was from the nurse and she did not have exact numbers with her...just the orders from the dr to tell us what to do until our next appt.

In the mean time, we are waiting to hear back from the neuro's office as he is setting up a sedated MRI for Nathan and at that time he will also be getting a spinal tap. He needs to get a look at the cerebral spinal fluid so he can see if there is anything wonky going on that would be contributing to his problems. I am so upset about this, but thankfully it will happen when is is still sedated after his MRI, so he will not feel any pain at the time. It is still a scary thought to think of a dr sticking a long needle into your baby's spine though.

Also, in talking to the neuro, he is going to get with the metabolic geneticist and see what, if any, testing the MG wants done on Nicholas before we see him on Mar 19. We have loads of time to kill until then, so might as well use it to get some of the basics out of the way until the appt. Then we can save ourselves the wait and the MG wil have the results at the initial appt.

Nathan is set up for his equipment evaluation for mid Jan. They are looking into transport equipment for him...not sure what we will end up getting if it will just be a stroller or a wheelchair. He called it a wheelchair eval, so I don't know. It makes me sad, especially when I see how well he is doing with the walking, but then I see him when he first wakes, when he is tired, or at the end of the day and he staggers around and can only take 2-3 steps at a time before he falls. He is such a trooper though, and just keeps picking himself up and pushes on. What a little champ!

We had to make an unexpected trip downtown to TCH yesterday for Nicholas to see the eye dr as he developed an eye infection on the lower lid last week Tues and by Fri, needed abx drops for it as it was not improving. It was looking so much better by Mon and then he woke Tues with the upper lid really swollen. The concern with the ped was that he was still taking the abx drops when this new inf popped up so he thought, knowing our kids, it would be best just to go downtown. The dr came in and the first thing he said was that it looked like it was too small for surgery....WHAT?!?!?! I never knew a sty could be bad enough for surgery!! He said to keep doing what we are doing and it should go away, but if it doesn't or it looks worse, we need to call back for further instruction. Wow. Only our kids would go in for a sty and have the dr say we were lucky and did not need surgery...yikes! Today it is at least looking a bit smaller, so thank goodness for that!

I think everyone is finally over the last of the sinusy yuck we have been passing around! WOOHOO! I am hoping that with the change in weather we had this morning (went from 73 to 38 in about 10 min...BRRRR!!) it will stay gone. Fingers crossed. We should not have any other appts this week, but next week, Nicholas has a sedated VCUG and urology appt to check his bladder out and sometime soon we have an immunology appt for both boys and Nicholas sees the physical medicine dr. Then the GI for both boys on the 15th, so here we go again into another appt frenzy. Also, my mom has her retirement party on Monday. We are all going to this to celebrate a long career well served as an elementary school speech path. She is SO looking forward to becoming a full time Nana to her 4 grandsons, but I know how bittersweet this day is going to be for her.

It's beginning to look a lot like Christmas...here at our house. After the Thanksgiving festivities, we had the house lights up Fri, the tree and inside decorations up Sat, and the yardwork done and outdoor decorations done Sun after church. Thankfully, we were able to finish it Sun as it was warm and nice then...since then it has been rainy and now it is COLD, so I think we got it done just in time! The kids are loving the decorations and we are all just so excited and ready for Christmas.

Guess that is about all for us for now. Please continue to remember our MN friends in your prayers as their daughter continues to struggle for her life. She is hanging on, but not doing well and her prognosis is unknown at this time, but drs are not giving them encouraging thoughts at appts. I know they would really appreciate any thoughts or prayers you could spare for them. Take care, know we think of you all and appreciate each and every one of you for the support you have given us. God bles you all!


Melody

Thursday, November 23, 2006 9:33 PM CST - HAPPY THANKSGIVING!!!

Wow...can I just say how STUFFED I am??? Boy, there was enough food here to feed an army!! We had my parents and sister and her family and Doug's parents, so it was a full house...12 altogether. We had turkey, stuffing, sweet potato casserole, mashed potatoes with gravy, green bean casserole, corn casserole, strawberry dill baby spinach salad, homemade cranberry sauce, dinner rolls, pumpkin bread, blonde brownies, pumpkin pie, carrot cake, and cherry cookie crumble dessert. Oh, and the deviled eggs we forgot to put out! Not to mention drinks, drinks, drinks! When the parades were on earlier, we grazed on some yummy snackage...chips/dips, veggies/ranch, cheese/crackers, snack mix, popcorn...oooooohh yummy! I am so full I can barely move! Boy we had a great day though! The food, family, and fellowship was wonderful. The boys were soaking up all the attention that being alone with BOTH sets of grandparents brings. Then, they got to enjoy running around with their cousins when they arrived. Boy, I cannot even explain the path of destruction 4 boys ages 4 and under can make in a house!!! 3 rooms demolished all while we were eating! Ah well...they had fun and it was all easily cleaned. Nathan, however, made the most of being the only boy to sit there and eat his dinner. The bigger boys had more pressing things to do than eat, so he took advantage when they left the kids' table and went around and sampled all they left on their plates! Boy did he eat well tonight! And, I said something to Nicholas I thought I would never say to him...he snatched food off his cousin's plate and ate it and his cousin put up a protest and I had to fuss at Nicholas to stop snitching food from someone else's plate! Isn't that great??? Now, everyone has left, the dishes are done, the house is put back together, and we are settled in and comfy and enjoying what is left of a wonderful day. I hope each of you had a day equally as pleasant.

This past week has been pretty uneventful. Our TV was on it's last leg and everyone's face was a sickly shade of seasick green and the color was slowly going out. It was getting hard to watch and we need something to keep the natives quiet and occupied while they are getting breathing treatments and such, so it was time to start looking. Thankfully, since Doug gets paid every 2 wks instead of 2x/mo, we have 2 random paychecks throughout the year that have no bills taken from them. We were even more fortunate that one of them came right now and enabled us to get our Christmas list checked off for the most part and we had some left over to buy a new TV. The only bad part was that barely any of the new TV's fit into the old entertainment center we have, so we ended up getting a TV and a new armoire to house it for a little more than the price of a much tinier TV (and not as nice) that would fit in the old one. This one fits much better in the space in our living room for the TV and Doug's parents said they would buy the armoire for Doug as his Christmas gift, so we were only out the money for the TV. How great is that? Doug loves the new TV as it is part of his Christmas gift from us and the new armoire that is his gift from his parents.

Doug finally caught the sinus junk the rest of us have been battling for weeks and was home from work on Mon with fever. Thankfully, he was back on his feet and feeling better by Tues after resting some Mon. I am still coughing as are the boys on occasion and I cannot help but blame the yo-yoing weather in part for our inability to kick this once and for all. It has been going hot to cold and back for so long now we cannot seem to kick it before the next big change comes around. No dr appts this week, but we will be having some big ones coming up in the next couple of weeks.

On a side note, the MDA (muscular dystropy assn) is having a Stride and Ride fundraiser walk at Katy Mills Mall on Feb 3 and we have been asked to form a team and participate. We feel gratefully indebted to them for stepping in and offering to pay for Nathan's AFO's when our own insurance was telling us they are not a covered item. The leg braces cost $2,104.00 and MDA will pay up to $2,000 at their contracted rate for them. What a lifesaver for us! So, how could we refuse their offer to form a team and walk for them? So, we have formed a team so far consisting of my parents and sister and her family, Doug's parents and brother and his family, the boys' godmother, and Nathan's therapist, who graciously asked to join us. We are accepting any donations for our walk and our team goal is for $1,000. So far, we are doing well and have raised some money already thanks to Doug's parents and their wonderful friends and aquaintences. We would gratefully appreciate anyone who wants to offer prayers for our team or who want to donate. Please contact us and we will tell you how to make a donation possible. We will be posting the donation information and a link very soon, so be watching out for it. It is a wonderful organization and has done so much to help us already. We can attest to the help this organization gives as we are direct beneficiaries of funding through them. Please prayerfully consider helping us out through prayer, donation, or both.

I hope this finds you all enjoying what is left of your holiday. For those brave souls venturing out on Black Friday to hit the sales...safe shopping, fabulous deals, and lots of adrenaline to you all!!! Take care, know we think of you all and appreciate all you do for us, and God bless you all!


Melody

Thursday, November 16, 2006 12:17 AM CST

Nicholas wanted me to tell everyone THANK YOU for all the nice birthday wishes! He had an awesome day and is SO proud to be 4 now!

Both boys are finally on the mend, but this yo-yoing weather has made hings very difficult to completely get rid of the coughs. I am recovering from a sinus infection myself and it decided to settle in my throat and as a result I now have laryngitis. That is a hard one for someone who talks as much as I do! I am even psyching out people I call or who call for me as I do not sound at all like myself! Ah well...this too shall pass.

The boys are doing well in therapy. Nicholas had easier sessions than usual this week due to the illness and they wore him out even with reduced work. He is making some great progress though. Nathan had therapy as well this week and his PT continues to be excited with his progress. Today he turned around in a circle for her. It sounds like such a little thing, but ends up being HUGE. She said today if he does not progress any more than this, he has enough skills right now to get him through all his years of schooling. What a relief it is to hear that. Now, any other skills he gains are a bonus!

Nathan is doing really well with his new AFO's and wearing them like he has had them all along. We lucked out at Stride Rite and found some 3W shoes which are actually XXXW!!! The biggest issue with kids in AFO's is finding a shoe with an appropriate fit. If Nathan were a kid with an average sized foot, that would not be a monumental task, but he takes after his brother with the wide puffy feet and would be an XW anyways even without the braces. So, finding shoes that will be wide enough to fit his chunky monkey feet AND the AFO's around them is near impossible! You can tell this find was a miracle! We were so hoping to find a pair of shoes that would NOT be tennis shoes so he would have something for church and other dressier kinds of occasions and this 3W was the only one in the store AND just the size we needed! Talk about luck! We also ordered shoes through the orthotics place that were meant to fit over the AFO's, and they are tennis shoes. So, that should have us set as long as they fit! I am so excited!

Still no word on the additional testing from the neuro. This week is 5 wks, so we are expecting to hear something any day now. As soon as we hear something, we will let you know. Also, we are in the process of appealing the formula denial, so no word yet on that front either. We were blessed with 2 angels who donated formula to us, one for nothing and one for the cost of shipping, so it will be about $23 out of our pocket for 4 wks worth. Boy are we blessed. I am not sure how long the appeal will take, but we will probably need another month's worth. I am so hoping the GI's office has samples we can use. If not, we will be checking eBay or similar, I imagine.

Guess that is about all for us right now. We are hanging in there and things seem to be stable, which is the way we like it! No excitement is always a good thing! I do have a very important request though. Our friends in MN are caring for a VERY sick little girl right now and things are not going as well with her as they would like. The drs are not being very optomistic about her odds right now, but the family is trying to stay upbeat and positive and have turned it all over to God at this point. PLEASE if you can, keep them in your thoughts and prayers right now. I know they would truely appreciate it. Take care and God bless!


Melody

Saturday, November 11, 2006 2:19 PM CST - HAPPY BIRTHDAY MY SWEET NICHOLAS!!!!

I can hardly believe we are celebrating my little guy's 4th birthday today! Seems like he was just born and already the time is flying by and he is growing up! Yesterday, he had a great time at Chuck E Cheese with 2 families we play with a lot. We ate pizza and played games and had such a good time! Here are some pics...

Nicholas blowing out his ice cream cake...



Everyone checking out Chuck E Cheese himself...



Nathan enjoying a game...note his new AFO's he got Thurs!



Nicholas feeding the ticket counter...



And Nicholas opening a gift...




Then, today was the family party. We had my parents and Doug's parents, my sister and her family, Doug's brother and his family, and the boys' godmother over. We had a blast! The kids played outside on the swingset and ran around the yard while the adults visited and had a good time. We grilled hot dogs and sausages and had chips and queso, potato chips, and popcorn. While the food was cooking, Nicholas opened gifts and after we ate, we had yummy cake made by Doug's mom. Here are some pics from earlier...

The cake table...



Close up of the cake...a Buzz Lightyear one made just for Nicholas...



Blowing out the candles...



Opening gifts...





Nicholas showing off his Buzz balloon...



Nathan chilling out after the party ended...




I think Nicholas loved all his gifts and spending time with his cousins and family. Tonight we will be going to Outback Steakhouse for his special birthday dinner and then home for him to play with all his new stuff! I have some medical stuff to update, but I am going to wait until the next entry since I want this entry to focus on our special little guy and his important day...no downers or yucky medical stuff today! Just marvelling at how far he has come and how well he is doing!

Thanks to all who come and visit...we appreciate you all. Take care and God bless!


Melody

Tuesday, November 7, 2006 9:02 PM CST

Well, this sure has been one yucky weekend! Nathan came down sick last Fri with an awful cough and fever. He stayed home with daddy while I took Nicholas to a birthday party on Sat. Nicholas had a great time, but once the party was over he was really quiet and still and felt warm. Sure enough, by Sun morning, he was running fever as well. Now, we have 2 coughing, green yucky nosed, and crabby kids. I am just hoping they are feeling better soon as we were planning on having a small friend party for Nicholas Fri at Chuck E Cheese with 3 litle friends and we are having the big family party for him on his actual birthday this Sat. I just don't want him to be sick on his birthday. Today, he was really good and rested on his little Pooh folding couch all morning after sleeping in until 10:30 and he went for a 4 hr nap at 2, so I am hoping that all the rest helped and he will wake tomorrow feeling much more himself. In the mean time, he has missed OT this week and will be missing PT tomorrow as, even if he is fever free, I am sure his body is not going to be able to handle that kind of physical strain this soon after illness. Nathan missed therapy today as well for the same reasons. I am hoping we are back to normal next week.

Still not much to report on the formula situation with the ins. We need to talk to the GI and see what needs to be done and in the mean time, I am trying to figure out how to get formula inexpensively that we can use for him until we are done appealing and know where we stand. I just cannot see racking up $800/mo formula bills with the HHC while we wait to see if the ins will pay or not. If we don't win, someone has to pay for all that formula and we sure can't do it at that price! We already have a bill of $2400 that the ins has not paid yet due to this mess, so we are not ading any more to that if we can help it. I have arranged for 4 cases of formula and that will last us a month, so we are ok for about a month now. After that we will see. I am forever grateful to 2 angels on the reflux and parenting site I am a member of ( www.parent-2-parent.com ) as their kind offer of formula (for the price it costs to ship it) is enabling us to be able to make it another month right now. What a great group of people! God sure blesses us when we need it the most.

Well, that's all folks...know we think of you all daily and appreciate all the support you have given to us. Take care and God bless!


Melody

Friday, November 3, 2006 7:46 PM CST

Whew, what a day today has been. Poor Nathan has been through the wringer and we have all been along for the ride.

First, he had his gastric emptying scan (GES). This was his first, and let's just say, even a new Baby Einstein DVD for this huge fan was not enough to keep him from screaming all the way through this 90 min test. He HATED it. Doug and I took turns sitting in with him and watching Nicholas in the waiting room. Thankfully, it is over and now we wait to hear the results.

Then, he had his eye appt. Last time he was at a -1.5 and now he is at a -2 with a slight astigmaism in the left eye. He seems to be changing half a diopter every 6 mos right now. She has decided at this point not to give him glasses just yet as he refuses to wear his sunglasses and she feels that the astigmatism causes the diopter change to appear to be more than it actually seems to Nathan in the way he sees. She thinks he will still be ok to go without, but any worsening will require correction. I am ok with that as long as she feels it is ok to wait. So, we will be seeing her with both boys on a reg basis from now on.

Nathan also went into the ped this afternoon. He is coughing up a lung, has a runny yucky nose, is sneezing, has purple rimmed weepy eyes that have been crying all day, and has a fever right now of almost 103. He looks as awful as he feels. He feels Nathan has a virus and it needs to run its course. The fever has popped up since then, so we will see how that plays out tomorrow. Poor baby just moans all the time he feels so bad.

Nicholas is not having any diarrhea right now, so I am hoping it was just a 24 hr thing that has passed now. Hopefully we are back on track for his emptying scan next week.

Here is a bit of GREAT news...To kill time in between appts at TCH today, we stopped by the Neuro clinic to leave another msg for the neuro. We left one yesterday and he called us back even before we had arrived back home. That is something we are very unaccustomed to. We left an apology msg for missing his call and asked him to please try us again. Well, he came out of a room right as we were leaving the msg and came over to talk to us face to face since that was his last patient of the morning. We explained the situation about Nicholas' formula and asked him his opinion on Nicholas' caloric needs with the suspected Mito and he said Nicholas needs all the calories he can get and offered to write us a letter of med necessity to help us! He then told us he would be right back anc went into an office, typed up the letter for us, and came back with it in his hand ready to go! I only thought I was impressed with him before, but now I am even more so! He said the results of the additional sequencing testing he ordered should be back within 2 wks (he called the lab to ask while we were there) and said we would schedule Nicholas' Mito testing and Nathan's repeat MRI when we got those results back. He is also geting us the referral to Physical Medicine for Nathan to get his equipment eval. Wow...what a HUGE change from where we were with our old neuro not long ago. This dr has been a Godsend for us!

Anyways, I sure hope this letter is the answer to all the prayers I know you have been lifting up for us. THANK YOU so much! Please know we think of you all and appreciate all you do for us. Take care and God bless!


Melody



Thursday, November 2, 2006 7:09 PM CST

I am updating to ask for some emergency prayers for a situation that has been causing us problems. We are in desperate need of prayers at this time...

Well, it seems like we finally have gotten to the bottom of the denial for Nicholas' formula. We had heard from the ins that our GI had told their med review dr that Nicholas was eating by mouth, so they denied it based on that. I know our GI well enough to know that he would not have just said something like that. Heck, he has written letters for us every time stating Nicholas needs coverage for tube dependency, so I knew better than to think he would just up and say something like that. We had a chance finally today to speak with him and he was as upset as we are about the situation. Seems that he tried to say everything he could without coming out and saying "sole source of nutrition" or "100% tube fed" so he would not technically be untruthful. Well, it seems the dr from the medical review board was kind enough to threaten our GI with losing his liscense if the ins found out he was lying for us and that if he kinew what was good for him and his career, he would tell the truth. Our GI basically had no choice left. I am so upset that the ins would sink so low as to bully a dr and threaten his career to get their way instead of taking him at his word and not questioning it. He then went on to plead Nicholas' case saying Nicholas was one of the more difficult cases he treats and because of his GI issues, it would be dangerous for him to not get his feeds and that he would be at risk for not getting them without coverage since we could not afford to pay for it on our own. He also said that of kids he treats who are tube fed, very few are 100% tube and 0% oral since the whole POINT is to get them eating at least a little to keep the oral skills so that they COULD eventually wean someday and that these kids NEED the support of the ins in the mean time to keep them on the track to weaning. Seems that was not good enough. I am devastated since I have no idea what to do now. We make to much to qualify for any assistance....and believe me, we have looked into everything. We are looing at already owning $2400 for the 3 mos they have not yet paid and wonder what we will do while we appeal this since we cannot afford to keep racking up $800/mo bills we are not sure the ins will pay in the end. The GI said he would do everything he could to try to help us and that he was so sorry this was happening. He felt terrible and I know it. I just wanted to warn you all about this. If our ins has taken to bullying drs and getting out of covering things this way, other ones might start. I would hate to see this happen to someone else. It is just plain wrong.

Nicholas had an eye dr appt today and it looks as though he is headed down the path to glasses as well. He is nearsighted also and tested at a -1 today, same as Nathan. Because of the occular issues associated with many forms of Mito, she is concerned for both boys, especially as they are showing signs of nearsightedness this early and most kids at their ages are 20/20 vision or farsighted, which is also normal for this age group due to the spacing of the eyes, I think she said. She also said that a nearsightedness dx at this early of an age is not the kind that can improve either...seems they are starting out like I did as a child. I am legally blind without corrective lenses and went straight into thick corrective lenses in 1st grade. Since it had happened so early on with me, I had no idea it was not normal since it had always been that way, so I am so glad we are taking them for evaluation early. She was concerned enough about Nathan's eyesight worsening after we told her he tries to stand just inches from the TV and leans down into books to look at them. She is having us come back tomorrow after the GES to examine him. For now, Nicholas will not be getting corrective lenses until he is at a -2 since she said at this age, a -1 correction is not enough improvement in vision to make him want to hassle with glasses and he probably would not wear them because of that. So, we go back for Nicholas in 6 mos for a recheck unless we see worsening before that time. Nathan, we will know more about tomorrow and I will update about that when we get that info.

Nicholas now has a GI bug...6 diarrhea diapers today and still counting. With his poor motility and constipation issues, a bad day recently has been a 4 diaper day, so this is a bad day. He was scheduled to have his GES tomorrow and Nathan's was to be next Fri, but the GI wants us to have Nathan's done tomorrow to allow Nicholas' motility time to settle down. A test done on him tomorroe would show fast motility because of all the diarrhea, so it would be inaccurate and a waste of time. So, Nathan gets his GES first thing in the morning, then goes up for his eye appt after that. Then, we will be going to the ped since Nathan has a bad, chesty sounding cough and runny nose. With the weekend coming, I want to be sure he is not wheezing or having any lung involvement. In the meant time, we are bumping up his breathing treatments.

Ugh. What an awful day. I swear I just want to go into a dr just once and hear them say nothing is wrong and no need to come back. Why can that never happen to us? I want better for my kids than this hand they have been dealt. I hate hassling with the stupid ins for things my kids NEED and not things they would ever have if it weren't medically necessary. It upsets me that, even with all the financial and emotional stress we are already under with everything the kids are going through, the ins could care less and chooses to cause us even more stress and upset by forcing us to deal with this excess junk on top of everything else we are already dealing with. It just is not fair.

Thanks to all who stop by here and check on us. It really means a lot. Please know we appreciate each and every one of you. Take care and God bless!

Thursday, November 2, 2006 7:09 PM CST

I am updating to ask for some emergency prayers for a situation that has been causing us problems. We are in desperate need of prayers at this time...

Well, it seems like we finally have gotten to the bottom of the denial for Nicholas' formula. We had heard from the ins that our GI had told their med review dr that Nicholas was eating by mouth, so they denied it based on that. I know our GI well enough to know that he would not have just said something like that. Heck, he has written letters for us every time stating Nicholas needs coverage for tube dependency, so I knew better than to think he would just up and say something like that. We had a chance finally today to speak with him and he was as upset as we are about the situation. Seems that he tried to say everything he could without coming out and saying "sole source of nutrition" or "100ube fed" so he would not technically be untruthful. Well, it seems the dr from the medical review board was kind enough to threaten our GI with losing his liscense if the ins found out he was lying for us and that if he kinew what was good for him and his career, he would tell the truth. Our GI basically had no choice left. I am so upset that the ins would sink so low as to bully a dr and threaten his career to get their way instead of taking him at his word and not questioning it. He then went on to plead Nicholas' case saying Nicholas was one of the more difficult cases he treats and because of his GI issues, it would be dangerous for him to not get his feeds and that he would be at risk for not getting them without coverage since we could not afford to pay for it on our own. He also said that of kids he treats who are tube fed, very few are 100ube and 0ral since the whole POINT is to get them eating at least a little to keep the oral skills so that they COULD eventually wean someday and that these kids NEED the support of the ins in the mean time to keep them on the track to weaning. Seems that was not good enough. I am devastated since I have no idea what to do now. We make to much to qualify for any assistance....and believe me, we have looked into everything. We are looing at already owning $2400 for the 3 mos they have not yet paid and wonder what we will do while we appeal this since we cannot afford to keep racking up $800/mo bills we are not sure the ins will pay in the end. The GI said he would do everything he could to try to help us and that he was so sorry this was happening. He felt terrible and I know it. I just wanted to warn you all about this. If our ins has taken to bullying drs and getting out of covering things this way, other ones might start. I would hate to see this happen to someone else. It is just plain wrong.

Nicholas had an eye dr appt today and it looks as though he is headed down the path to glasses as well. He is nearsighted also and tested at a -1 today, same as Nathan. Because of the occular issues associated with many forms of Mito, she is concerned for both boys, especially as they are showing signs of nearsightedness this early and most kids at their ages are 20/20 vision or farsighted, which is also normal for this age group due to the spacing of the eyes, I think she said. She also said that a nearsightedness dx at this early of an age is not the kind that can improve either...seems they are starting out like I did as a child. I am legally blind without corrective lenses and went straight into thick corrective lenses in 1st grade. Since it had happened so early on with me, I had no idea it was not normal since it had always been that way, so I am so glad we are taking them for evaluation early. She was concerned enough about Nathan's eyesight worsening after we told her he tries to stand just inches from the TV and leans down into books to look at them. She is having us come back tomorrow after the GES to examine him. For now, Nicholas will not be getting corrective lenses until he is at a -2 since she said at this age, a -1 correction is not enough improvement in vision to make him want to hassle with glasses and he probably would not wear them because of that. So, we go back for Nicholas in 6 mos for a recheck unless we see worsening before that time. Nathan, we will know more about tomorrow and I will update about that when we get that info.

Nicholas now has a GI bug...6 diarrhea diapers today and still counting. With his poor motility and constipation issues, a bad day recently has been a 4 diaper day, so this is a bad day. He was scheduled to have his GES tomorrow and Nathan's was to be next Fri, but the GI wants us to have Nathan's done tomorrow to allow Nicholas' motility time to settle down. A test done on him tomorroe would show fast motility because of all the diarrhea, so it would be inaccurate and a waste of time. So, Nathan gets his GES first thing in the morning, then goes up for his eye appt after that. Then, we will be going to the ped since Nathan has a bad, chesty sounding cough and runny nose. With the weekend coming, I want to be sure he is not wheezing or having any lung involvement. In the meant time, we are bumping up his breathing treatments.

Ugh. What an awful day. I swear I just want to go into a dr just once and hear them say nothing is wrong and no need to come back. Why can that never happen to us? I want better for my kids than this hand they have been dealt. I hate hassling with the stupid ins for things my kids NEED and not things they would ever have if it weren't medically necessary. It upsets me that, even with all the financial and emotional stress we are already under with everything the kids are going through, the ins could care less and chooses to cause us even more stress and upset by forcing us to deal with this excess junk on top of everything else we are already dealing with. It just is not fair.

Thanks to all who stop by here and check on us. It really means a lot. Please know we appreciate each and every one of you. Take care and God bless!


Melody

Sunday, October 29, 2006 10:15 PM CST

Well, lots to tell!

Nicholas had his Urology appt this past Thurs. We had this appt in the hopes of getting to the bottom of his potty training issues. Nicholas will be 4 in 2 wks (gasp!) and is still in diapers as he urinates like a newborn. Little and often...all day long! He cannot go longer than a few minutes (10-15) without needing to urinate again and this frequency makes it near impossible for him to wear undies or train. He simply has no idea when he nees to go. So, we saw the uro and he suggested some testing since the "wait and see" approach did not work for him. We waited 8 mos and still no change, though he really WANTS to be trained and wear big boy pants. He is just not able to stay dry enough yet to do that. He wants Nicholas to have a VCUG, which I think stands for a Voiding Cysto-Urethro Gram. Basically, he will be catheterized and they will fill his bladder to capacity and then watch how he urinates. I hope this will give us some insight as to why he is having these problems. He also suspects that, if Nicholas is dx with Mito like his brother, he may have bladder involvement as it is a muscle. So, having Nicholas tested for Mito will probably help us figure out what is going on with him, we hope. Please pray for Nicholas as he undergoes this test as we have heard it is just awful. Thankfully, the uro suggested doing it sedated, so we will be going that route so hopefully he will not remember it. My sister had one as a child and still to this day remembers hers so I know it is very unpleasant. He will be having this done the first week in Dec.

On to Nathan...

NATHAN'S RASH HAS A NAME! After going to 2 peds, an allergist, and a derm, the ped was the one who finally figured out what it was. It is a common rash that is rare in babies and is called Pityriasis Rosea. The ped even went to far as to look up Nathan's symptoms in his med book at home to figure it out and sure enough...he did! The treatment is to do nothing except treat the itch. It can take up to 14 wks to be gone, but (knock on wood) it seems to be disappearing already, thank goodness.

Nathan had an orthotics appt on Fri and was recasted for new AFO's. Apparently he is not too fond of wet plaster on his skin as he screamed through the whole casting, even with a sucker I had given him hanging out of his mouth. Poor baby. He picked a cool star and planet looking pattern called Light Sky for his new AFO's and they will have gold colored velcro. They will be in in 2 wks and we will go back the 9th to get them fitted and then take him shoe shopping for new shoes!

He is also...(drumroll please!!!) officially WALKING!!! Yes, you heard that right! Our 19 mo old baby is finally WALKING!!! He has been walking for about 2 wks or so now and to look at him, you would never know he is so new to it! He walks around like he is hot stuff and knows it! He has been meeting goals as fast at his PT can write them, so she is dropping him down to 2x/mo instead of weekly. I am not sure what we are going to do without seeing her weekly as she has been coming for over a year every week to our house, but man am I proud of him! He is doing so awesome in spite of everything!

In other news...

We have been pumpkin patching it for 2 weekends in a row now and also went to the annual trunk-or-treat in Uma and Papa's neighborhood. The kids have had a blast and raked in the goodies at the celebration. I think we will all be glad for this holiday season to be over as we have been busy, busy, busy and on the go all the time! I am ready for some calmer, quieter weekends!

Guess that is all for the recent news around here. Please pray for our MN friends as they had the appt that every parent dreads last week...they got some very unexpected and scary news about their infant daughter. I know they sure would appreciate any and all prayers you could send up on their behalf right now as they face a very uncertain journey with her new medical issues. Take care, know we think of you all, and God bless!


Melody

Friday, October 20, 2006 4:41 PM CDT

What a week...if it isn't one thing, it is another...

I had to take Nathan in to the ped Mon for this white pimply rash that just cropped up out of nowhere and it went from a few bumps to everywhere in a matter of minutes. He dx him with some patches of what appears to be eczema and contact dermatitis from some irritant he had come into contact with somewhere. He rx some steriod cream for the eczema-like patches and said the rest would go away on it's own in time.

Well, Tues, the rash had changed from white to red pimply bumps and was more bumps than ever, so I took him into the allergist/asthma dr to see if they had any other ideas for him. The dr was pleased with the steriod that the ped put him on, but he said due to the severity of the lesions, he needs to be on the cream 3-4x/day temporarily instead of just twice daily until we can get it under control. He had a new patch of it on his inner elbow this morning, and since making the appt, a new patch showed up on his inner wrist. It was spreading like crazy. He said he was not sure if it was a true exzema or not seeing as how it usually shows up much earlier than 18 mos, but it looked like it was, so he said we need to bathe him daily in Aveeno bath and use Aveeno products, use Vanicream moisturizer on him immedialtely after baths (he said 3 min and the moisture starts evaporating already), up the steriod cream for the time being, and give him Benadryl every 6 hrs until it clears up so he won't scratch at it. He said after it is gone, we can go back to normal and see how he does...if it comes back, it is exzema and we go back on the protocol for it and if not, we can go about our business. As for the contact dermatitis, he had no idea what could have caused it. By the time we got there, the pimply bumps had all turned even redder. Since they turned back to skin color when he stretched them, he was not as concerned since it did not involve the vascular system. He said we needed to just watch it and it should resolve on its own eventually. He was pretty surprised at how much it had spread and how many bumps he has. He literally looked like he had a BAD pimple breakout ALL OVER. You touch his skin and all you feel is bumps!

We have been dealing with this all week and today it looks no better. The pimply bumps have changed into more like tiny blisters and the size of them is bigger than they were earlier this week. They are also terribly itchy and he spends most of his days right now scratching, trying to get into his clothes to scratch, rubbing himself on the carpet to scratch, and being clingy and fussy. We decided not to chance leaving it over the weekend and so back we went to the ped today. Our reg ped was out so we saw another dr we have seen before in the practice instead and the first thing he said was that he had been seeing a LOT of rashes this week and I said to him "Good...maybe you have an idea of what to do about this one". I took Nathan's pants off and he looked and looked and said "ummm....well....this is one I have NEVER seen before...." Ugh! So, he took blood for a CBC to see if anything looked off and gave us an rx for Prednisone (which I am dreading since he has such awful mood swings on it) and told us to wait to give him any until we hear back from him later today. He could not tell us what it was, how long it would take for it to go away, or how to treat it except that he said it sounded like we had been doing everything we could be doing for it right now. If it is not better after the weekend and the steriods, we have to get an ASAP appt with a dermatologist and see what they recommend as he had no other ideas what to do. Leave it to my kid to be the one who has a rash that 2 drs so far this week have said they have never seen before. We do know however that it is not contagious as nobody here has gotten it at all. We at least have an appt with an adult derm for Tues and will probably need to see a peds one eventually unless the ped can pull strings and get us into one at TCH next week. I just want it GONE...my poor baby is itchy, bumpy everywhere, and just plain miserable. Here are some pics of our poor, pitiful little man...

Rashy leg...



Rashy leg and you can see how nicely his biopsy site is healing...



You can kind of see how bumpy it is in this one...



And this one is on his arm...



So, that has been our week in a nutshell. We are going to a big Halloween party tonight put on by the therapy place where Nicholas receives his therapy and also where Nathan's PT works part time. It is a wonderful place and I think the boys will have so much fun! At least it will be a lot more fun then dealing with this yucky rash this past week! Nicholas is going to be a lion and Nathan is going as a giraffe...Doug may dress as a zookeeper just to make it more fun! I will be sure to take pics and post them later. I think tomorrow we will be heading out to a local pumpkin patch to enjoy the cooler weather with Doug's family. That should be fun too! We will have lots of pics to share next week! Take care, God bless and know we think of you all!


Melody


Ok...just had to come back and add in the pics from tonight...just too cute to wait! We had such a good time! They had games there and a bounce house, a haunted house, crafts, food, a pinata, and they took pics of all the kids in their costumes. It was a great time!

Nicholas the Lion and Nathan the Giraffe enjoying the bounce house...



This lion sure enjoyed his cupcake!



And a giraffe who loved his pumpkin cookie!



Mama and Nathan enjoying grapes with Nathan's PT...he loves her soooo much!



Our wild animals enjoying the slide together...



We saw Nicholas' OT there dressed in a weding dress and crown and Nathan's PT dressed as a queen with a red wig. Nathan had no idea what to think as he recognized her voice, but was confused since she did not look right...he knew it was her tho from her voice and toddled right over to her for a big hug! she has been SO proud of him that she was showing him off to everyone tonight. After we left we had to pick up Nathan's meds at the pharmacy and sure caused a stir there bringing our wild animals in there. It was too funny! Tomorrow is the pumpkin patch, so I will get off and get these exhausted kiddos into bed! Have a good weekend everyone!


Melody

Friday, October 13, 2006 3:19 PM CDT

Nathan had his appt with MDA (Muscular Dystrophy Assn) today. We got to see the dr we wanted to see and not the dr we were actually supposed to see of the 2 that see patients through the MDA clinic. The MDA lady asked this neuro if he could come in to see us even tho he was not seeing patients today and he said he would...I was really impressed. Not many drs would do that for someone they have never met before. He came on a day when he was not working just to see us. It seems like the testing was all in after all. Not sure why the other dr never got around to telling us that, but whateever about that at this point. It looks like Nathan has a Complex 1 def...he said something about him having 55% function in the mitochondria instead of 100% as it should be plus extra fat and sugars built up in the cells and extra mitochondria as well since the body is not using all it is supposed to and is compensating for the lack of functioning mitochondria by bringing in more. He ordered another test to be done today to do some more testing specifically on the Complex 1 so we should hear back from that Mon I think he was saying. He was very kind, answered all our questions, seemed very thorough, and agreed to take us on as patients. I was so relieved. We are to get another MRI soon to check progression of his myelination, probably a spinal tap to look for something (not sure what it was he said) to do with the Complex 1 in the Cerebral Spinal fluid, see the metabolic geneticist with both boys, and he wrote the rx for Nathan's new AFO's and also gave us referrals for an equipment eval and a gait analysis through Physical Medicine (which is where his wife is a dr of all things). He is not going to start Nathan on any diet changes or meds until we get the results back from this current test they are running. When that happens, he said he would call and talk to us about that and what we need to do about Nicholas. That is about it in a nutshell.

It was a good appt overall and I am really pleased with this new dr. We did run into the old neuro today and that was not terribly pleasant, but not unexpected from the way she has treated us recently. I am just happy for this to be over, have some answers, be on our way to getting the rest of them, and having a dr who cares about taking care of us. THANK YOU for all your prayers! They obviously worked!! Take care, God bless, and know we think of all of you.


Melody

Wednesday, October 11, 2006 6:09 PM CDT

Well, we have been trying to get a call back from the neuro since almost 3 wks ago when we last spoke to her. She finally called us back today. She knows we are meeting with the MDA clinic dr (who is also a higher-up in the neuro clinic we go to) so the call was not all that surprising really. I think it was more for looks than for us, but whatever the reason, she called. She told us she looked into the testing and why it was not back and said that they were not done yet. That was really about all she could say except that there were no intermediate results available that we know of and she did not say if they have not found anything further and are still looking, or if they found something and want to look into that further. So, we still know nothing more than the initial results of Mitochondrial Myopathy. She also said that although she is a neuro, her specialty is in headaches and since there are other neuros (the one we are seeing through the MDA clinic and the other neuro who sees MDA clinic patients) who have a specialty in neuromuscular disorders, she thinks we should stick with the dr we are seeing or the other neuro through that clinic instead of with her. She said she "would not be offended at all if we chose to see the other dr", so I guess that is her way of nicely saying she is passing us off to another dr. She said we should cancel our appt with her at the end of the month, but we are going to wait until AFTER this appt Fri to make sure we HAVE a dr to go to and not be stuck in no mans land with no dr at all.

I have a bitter taste in my mouth from all this. I am not sure if I should be happy that she is admitting this is beyond her since we have suspected this from the way she has treated us since he was dx...or if I should be upset that we have basically wasted 13+ wks since the dx when she KNEW this was beyind her and could have referred us to another dr and set up an appt with them so we could see someone else and find out what is going on. At this point, we STILL only know what we have read about and researched on the internet and joining a mito group online and not ANY info from our actual dr. We have been stuck in one spot all summer since we have no info to use to move ahead and move on past this. I am frustrated and disappointed and most of all, I feel so let down over the lack of concern from a dr whom I had a lot of respect for and personally really liked. I just hope this new dr has something to tell us about all this because if not, then we are looking at travelling to Boston or somewhere else to see one of the mito gurus in the US and get help somewhere. I just NEED to know how to care for a child with Mito and right now I have NO clue how to do that. I am currently hanging all my hopes on this appt Fri and I hope we can get somwhere...

Beyond that we are just learning what we can and cannot do by trial and error. We went to the Rice Harvest Festival on Sun thinking it would only be in the 80's and we would not be there long. Well, we were there maybe 2.5-3 hrs and it was HOT. Not really any breeze and a whole lot of sunshine. The kids drank water and ate snow cones and ice and acted ok, so we did not realize how much they were affected by it. That night, both slept 13+ hrs overnight and the next day they both slept about 4 hrs for a nap and we had to wake them up at 6 so they would sleep that night. Yesterday we had my sister and her 2 kids over and also my parents and I guess we wore the boys out. Both slept in until after 9 today when I had to wake them up to make it to Nicholas' PT and both slept 4+ hrs for nap again. On the day s when they sleep a lot, both are pretty laid back and quiet. I am learning from them what kinds of things we can do and what we need to cut back on and/or avoid. Both Nathan's OT and PT are getting together and working out a new therapy regime for him at home since they do not want to give us a block of activity to do with him that will tax him too much and cause problems, so they are trying to see how they can work therapy into the daily routine...like doing a crunch when we pull him up after a diaper change every time his diaper is changed...so we can still get it all in, but without taking too much energy at once. Did I mention how much I LOVE his therapists? :D In the mean time, they will be taking it easy on him until we have more info on what is going on with him.

Anyways, that is our update for now. I PROMISE I will update on Friday after we have our appt and I have time to process it all and let it sink in. I am hoping and praying that we will get the answers we need for how to care for our child. We may not have the official results back yet, but we can at least get as much other info as we can. Please think of our MN friends as they are away from home with both their Mito kids seeking medical care and have had some rough patches this week and last. If those of you who read could pray for us on Fri with this appt, we would sure appreciate it greatly. Take care, God bless you all, and know we think of you all.


Melody

Friday, October 6, 2006 10:29 PM CDT

Another week and still no word from the neuro. We tried to contact her all this week and nothing. I am beginning to get frustrated and am going to hang most of my hopes at this point on this MDA appt we have next week. We will be seeing one of 2 neuros and both are well versed (from what we have been told) in neuromuscular conditions. I am hoping someone knows something about mito, but at this point I am willing to travel out of state to get answers if we cannot find someone here who can help us with our child(ren).

Nicholas has been fighting a tummy bug this week and has been feeling crummy to the point of me hooking him up for 2.5 hrs for extra pedialyte or water through the tube during naptime. It seems to help amd perk him up when he wakes up. Since he is used to being hooked up overnight while sleeping, it does not bother him. He has been running a low grade fever all week and Nathan started in with one today. I am not sure what to think...they had flu vaccines earlier this week (Tues) and both have been mopey since then. I am hoping they both feel better soon.

Both boys have been progressing nicely with therapy. Nicholas has been working on squatting in PT and has been greatly improving with that according to his therapist. He has been using stamps and the like in OT and just got a weighted vest to help him cope with stressful situations and his increasing issues once again with sensory integration dysfunction. He is increasing his wearing time right now and the jury is still out as to whether or not he likes it. I guess time will tell. Nathan has been a little workhorse at trying to walk. He can take steps now and can even go as far as several feet at a time when he really wants to. He tires SO quickly, so stamina will be an ongoing issue for him, but man is he doing great! The PT is in heaven with his progress right now! OT is going ok, but he seems to be much more proficient in those skills as opposed to the gross motor dealt with in PT. Nicholas is just the opposite in his strengths, needing more help with OT. The PT for Nathan brought up again the need for him to be fitted for a special needs stroller with bus tie downs as she is almost positive he will qualify for PPCD and thinks he needs it. I am not sure what to think as the part of me that wants to live in the land of denial wants to believe he will never need something like that, but the reality is...even when he starts walking enough, the stamina will be an issue for him due to the Mito and he will always tire quickly and need assistance for longer distances. I am not sure I am ready to get him something now, but when we go to the MDA appt next Friday we will be asking about an equipment eval to make sure he has all the special equipment he needs. If they decide he needs one, we will look into it then.

On other fronts, I had my endocrinologist appt last week and got bloodwork drawn and she is not happy. My fasting blood sugar was 102, which is high. It needs to be under 100, especially since I am taking 1000 mg of glucophage/day and that is one treatment for diabetes. I am to get a special sugar level test next week called a Hemaglobin A1C to see what the average of my blood sugars has been over the past 3 mos. I also have to get my cholesterol levels and triglycerides checked as well since they forgot to order those this last time around. I am not sure what will happen once we get those results back, but in the mean time...bye bye sugar and carbs for me and hello excercising. After this past chaotic summer, I have not had a lot of time to focus on myself and my health and I slacked on my diet and exercise and now I think I am paying for it as it all catches up to me. I will keep you posted as I know more.

Guess that was our week in a nutshell. Nothing too exciting, thank goodness! Please pray for us to get some important answers at this upcoming MDA appt next week. Right now we know nothing about Nathan's Mito dx and this is causing great anxiety as we just want to care for him properly and we are not sure we know at all how to do that...the neuro is no help as she has not gotten us ANY info at all so this has been the new great source of stress for us. We will keep you posted, but prayers would be greatly appreciated in the mean time. Thanks to everyone who stops by. Take care, know we think of you, and God bless!


Melody

Saturday, September 30, 2006 11:46 PM CDT

Well, this sure has been one busy week...if it is not one thing, it is something else!

Nathan blew a 104 fever Monday morning and had cold-like symptoms...cough, runny stuffy nose, etc. I should have known something was up when his breathing was wonky Sun night. He was breathing very fast and retracting after his pulmicort treatment, so we immediately gave him xopenex and that seemed to help. He was still breathing fast, but not as fast and not retracting, so I think it was enough. He has been getting xopenex since then and things seem to be ok with the breathing now. He also got a nice big infection of some sort in his nostril that swelled up so big it nearly blocked off his nostril. The ped saw him and told us to just put bactroban ointment on it and that seemed to help. Fri it was HUGE and then seemed to have burst and was draining blood and yucky stuff. Today it looks much better...still a touch red, but not swollen or yucky anymore. I hope we are on the back end of that.

Mon I also had my appt with the reproductive endocrinologist for my routine checkup. I have lost an additional 6 lbs since my last visit and I am assuming all that is from stress from the summer. Not complaining, but not the nicest way to lose weight either. I have to get my liver enzymes, triglycerides, cholesterol, sugar levels, and hormone levels rechecked. Not looking forward to that as it is a fasting test, but ah well. I am hoping it comes back looking ok.

Nathan had his well check Thurs. He is still holding steady at 25 lbs 8.5 oz (as he has been since Mayish) and he was 31 in tall. He seems to be growing into his weight and slimming down some which has helped his mobility and seems to be a healthier weight for him. He looks good and even showed off for the ped by taking a few steps while there. I thought the ped was going to jump for joy almost he was so excited to see Nathan so close to walking! He was a lucky baby and got out of there with NO shots this time. He would have gotten the flu shot had they been available, but the office has not received theirs yet. I hope it is soon, but we will be ok...both boys are on their high risk first for the shots list so I know they will save them for us.

Both boys saw the GI on Fri and that visit was ok. I was not thrilled with it overall, but that is the way this roller coaster works sometimes. Nicholas had what the GI called an "angry sounding tummy" and told us most likely Nicholas had a stomach virus. That would explain the yucky smelling green stool he had twice the day before and his almost nonexistant appetite. Sad to think that Nicholas was feeling bad and never even mentioned it. This just leads me to believe he feels sick a lot more than he lets us in on and that makes me sad for him that he is hurting and feeling bad and we have no idea. Guess I really need to watch closely for appetite changes and stool changes to see if that will point out a problem. He is stagnant in height and is slowly dropping off the chart. Hie weight is ok I guess...that was not a complaint this time. Nicholas also had an enlarged liver again and needed a blood draw to check liver enzymes and do another celiac panel to check things over. He was a brave boy as usual and the tech noted that she thought it seemed like he was used to this since he was so good at letting them in there and get things done. Nothing exciting has happened with regards to the plastic Nicholas swallowed, so either we missed it, or it is still in there. The GI did not seem overly concerned at this point though, so I guess that is ok for now. The GI ordered a gastric emptying scan (GES) for Nicholas since it has been several years since he has had one and wants to see how his gut motility is doing. This is my biggest dread as this has to be the most tortuous test my child has been through. They have to lay completely still for 90 min to evaluate the rate the stomach empties, so they tape the kids to the table after wrapping them up like a mummy. He has screamed through it every time and it just rips my heart out. I am hoping he is old enough now to lay still and watch Baby Einstein without getting too worked up. He also has to be off the Reglan for 3 days mon, so we have to wean him off that. I am assuming this is going to make for one unhappy child. Nathan is still having constipation issues that seem to be worse since starting whole milk. The GI thinks it may have something to do with all the casein in the whole milk and suggested trying soy milk to see if we see an inprovement. He wants Nathan to have a GES as well since he has not ever had any formal testing for reflux since his has always been pretty easy to control with meds. This test is not going to go over well with him at all. I am not thrilled about one child getting put through this, but 2 makes me want to cry. His reflux has been flaring more as well recently due to all the constipation backup causing it to flare. The GI upped his Miralax to help him go and we will wait for the results of the GES to see if he needs an added motility med. He was thrilled with Nathan's weight and is happy with this trend towards a more proportional weight to height ratio. We also talked about Nathan's mito dx with the GI and I noted that he showed no surprise with that revelation. He has suspected something mito or metabolic related with Nicholas since he was about 18-20 mos old, so I knew that Nathan's dx was not going to bowl him over. He is really interested in seing if we are able to get a more specific dx and to see how Nicholas' testing turns out as well.

Thankfully, after that, we were able to enjoy a nice lunch and get in some great deals shopping at the outlet mall in San Marcos before coming home. Gotta love the Disney Store outlet, the Gymboree outlet, and the Liz Claiborne outlet!

Today was nice. Doug's parents came over for a visit and dug up an oak tree that had sprouted up in the middle of our front hedge. We did not need it and they were wanting to plant some trees on their property, so it worked out. Nicholas was kind of sad to see it go as it was outside his window and he liked it there, but there was no way it could stay...too close to the house and it was already 7-8 ft tall and a thumb width around at the base. They went with us to Toys R Us and the kids got to celebrate Geoffery the Giraffe's birthday. They got to color pics, march in a parade with instruments they got to keep, have cupcakes or twinkies, and we also went through the aisles to get ideas for upcoming birthday and Christmas. My inlaws got some gifts for the kids while they were there. Then we went to eat. All in all, not a bad day.

Guess that is all for now. Hope all is well with everyone else. Take care, God bless, and know we are thinking of each of you!


Melody

Sunday, September 24, 2006 8:08 PM CDT

Well, what a night we had last night! Never a dull moment around here...gotta love it...

So yesterday in the car we were driving around running errands. Nicholas had some candy in a plastic tube he was eating. Suddenly we heard him choking and Doug immediately pulled over and I ran around to the back. By this time he had cleared whatever it was. So, we ask him if he was ok and he said yes. Then we ask him what was in your mouth? He tells us CANDY TRASH. We had NO idea what he was talking about, so we had him point. Apparently he had removed the plastic disk that was the bottom of the candy tube and was chewing on it. When we saw him, we only saw him chewing and assumed it was the candy. He swallowed this...a slightly bigger than a quarter round plastic disk. We turned the car right around and went home to call the GI and see what we needed to do. The GI on call tells us take him in since he has a fundo and we have to be sure that the disk cleared the wrap. She was also a bit concerned about his poor motility being a problem moving it through as well. So, off we went to drop Nathan at my parents and go into the ER at TCH on a Sat night...probably the worst night of the week to go there. UGH. We actually got there before the crowd hit (thank goodness!) and were in and out in just under 3 hrs. That HAS to be a record for the ER there without seeing the surgeon (and we sure did try to make this a problem they could help us with...it was a no-go...ah well). They xrayed him and since it was clear plastic, it did not show up. They trialed juice and he did ok, then graham crackers and he still did fine. They assume it cleared the fundo wrap since he tolerated eating with no problems. They d/c us to come home and wait for it to pass. We then drove home in a torrential downpour with lightening flashing everywhere around us to get Nathan and head home. We gave him a big dose of Miralax last night to see if we could get results. So far one little one and one big one and nothing in either. Tonight will be another big dose. Thank goodness we see the GI Fri. If we don't see it by Thurs we will be calling to see what he wants to do about that. I think we must have been the ER's easiest case all evening! And, Nicholas was the little entertainer for everyone making them roll with laughter at his own original "Shaky Diaper Dance" (you HAVE to remember to ask him to do this dance for you sometime as it is absolutely hysterical!). Only my child...

So the other day I was having a REALLY down day and I knew I needed to talk to my dear friend in MN. She is the calmest person I have ever met and it always makes me feel so much better to talk to her. So, we talked for a long time and had a great conversation. Then, later on that night she emailed me to make sure I was ok. I am so blessed to have someone like her in my life right now, but I did not realize just how much I was blessed until the other day when these showed up on my doorstep and left me speechless and in tears....



My friend is a true Godsend a I am one lucky person to know someone as genuine and sincere and caring as she is. THANK YOU again...words cannot express what that gesture meant to me.

We got the boys' Halloween costumes today at Babies R Us of all places. Nicholas had told me weeks ago that he wanted to be a LION and he is not big enough to fit into the Mickey Mouse costume he was supposed to be wearing. So, off we went to find see what we could find. Well, lo and behold, we found a lion costume in just his size and he LOVED it! And, he looked adorable in it, too. Nathan decided he liked the giraffe costume they also had there and boy did they look so sweet together! I think one of us is going to dress up like a zookeeper when we take them out to complete the look! Goodness knows we will have our hands full with those little wild animals!

Guess that is about it for us. We are going to be hanging out this week and waiting for things to start moving through. Hopefully we will find our little "prize" soon. Take care everyone and God bless!


Melody

Friday, September 22, 2006 11:49 AM CDT

UPDATE...

Doug had called our ped's office to make an appt to talk to him and see if he could make more headway then we were. One of their phone nurses (who we love!) suggested trying to talk to the office mgr at the neuro clinic and see if she could help us get in touch with her. He got someone who, after hearing the situation, transferred him to our neuro's secretary's supervisor, who said she was the office mgr. He explained to her the situation and she connected him directly to the neuro. Needless to say Doug was quite caught off guard that it was that easy after 7 days of no luck.

The neuro apologized for not getting back to us sooner and said she had to prioritize the msgs in order of urgency...meaning we got stuck at the bottom of the pile repeatedly. Ugh. She also said she had been out of the office on vacation all week and then on hospital rounds, which is strange since her secretary had told us that she was in clinic and was doing double duty taking over for another dr who had to leave unexpectedly. There is a lie in there somewhere, but at this point, I am too frustrated and tired to worry about that. This is not the first time we have encountered gross micommunication at this office tho, so who knows.

He then got to the heart of why he called. She is willing to write the letter of med necessity and cautioned us it may not work. We already knew this, but figured we would at least try. She is concerned with Nathan's hand wringing with zoning out and wants us to try and note when it happens, how long it lasts, and if there seems to be a trigger for them. She also feels we need to update his MRI since he has not had one since 5 mos old. She is concerned with Nicholas' frequent headache complaints and faxed us a headache log to record them. When asked if she would be willing to see Nicholas at Nathan's appt, she did not agree or say no, so who knows if he will be seen soon or not. The test results are still not back. She said, in her experience, that usually means they have found something and are taking time to look further. We know he has Mitochondrial Myopathy, just not what specific kind yet. Those are the tests being run now. She said she would call the lab and ask what was going on and get back with us. She is still recommending waiting on the testing for Nicholas until after we receive the results from Nathan. She also said, since the last time we spoke (6-7 wks) she had not had a chance to talk over Nathan with her colleagues and get the information she told us she would get. She said it is on her "to do" list and she will get back with us after she does it. I am not holding my breath as this is the 3rd time she has told us this. She was glad that we got in with MDA and had no idea we already had an appt with them, which is strange since they are in the same clinic with MDA. Other than that, we just wait to hear hack from her. I am thinking we may not hear from her again until the next appt at the end of Oct, but we will see. I am hoping she will get us this info quickly. In the mean time, I am still trying to decide of getting the ped involved will help matters any at all or not. I am on the fence about that one. Guess that is all. Thought I would share and let everyone know where we are in all this.

So, we are making progress, tho it is agonozingly slow and not nearly as quick or easy as I was hoping it would be. I really just want to KNOW so we can start the boys on whatever they need to be on, get them whatever help they need, and move on with our lives. Thanks to those who have emailed and offered support. It means a lot, especially now while we are struggling to deal with all this. Take care and God bless every one of you!


Melody



Wednesday, September 20, 2006 3:40 PM CDT

I just need to vent about this for a min since I feel right now like I want to just SCREAM....

Nathan had his muscle biopsy weeks ago...in fact, we are now in week 11 of waiting. We are in limbo mode with him right now and definitely with Nicholas since it complicates things to move forward with testing for him if we are unsure of exactly the issue we are looking for. We are also in the middle of our battle with the insurance over things for the boys they need, but are not covered. We called our neuro LAST Thurs and it is Wed now and we have yet to hear back from her. We have been calling almost daily and nothing. We need her to write this letter before we can send the appeal in and right now we are just wasting time. All summer it has felt like we have been getting the blowoff from her and that upsets me. The last time we spoke, she asked me if he was having emergent issues and when I said no, she kind of got onto me about how I should be happy he was doign ok and to not worry so much since there are kids down in the ICU seizing right now and we are so lucky to not be one of them and to imagine how their parents feel right now. Ok... I know NOTHING about this dx she dropped into our laps 10 wks ago and how am I supposed to know if he is emergent or not? I have never witnessed a seizure before in my life. I have no idea what to look for. He is hand wringing now which concerns me and also seems to kind of blank out while doing so, but I cannot even get her to return a call to ask if it is a problem or not. I know I should be happy that things ar enot worse, but right now I am a parent who has a LOT of unanswered questions and I feel I have a very valid right to feel upset and anxious and want answers. Am I wrong for wanting her to stop pushing us to the back burner to always put other people in front of us? She told us also the last time we spoke that she had several people she needed to talk to to get more information and as soon as she did, she would be in touch and pass the info along. That was probably 6-7 wks ago now. How long should it take for her to speak with people she works with in the same office and get back to me? I am trying not to be unreasonable here, but HOW LONG DOES THIS TAKE? I know her life goes on after taking with us, but ours isn't. It feels like we are frozen in time just waiting. Dh just called up there and left yet ANOTHER msg on her secretary's voice mail. Probably better since the thing we always get told is that she is "so busy right now" anyways. I am tired of having to tell everyone who asks that we still have not heard yet as I am getting pretty certain from others I know who have gone through this process that 11 wks is getting on up there and we should be hearing something soon if not already. I just want to KNOW so I can deal with it and move on with things. And I don't like being made to feel like my concerns are not valid about my child and his future prognosis just because right now he is doing ok and is not emergent. Are my feelings any less valid than any other mother who has a child who has been dx with a chronic disorder...whether it be emergent or not? I am not sure if I am being unreasonable or not and I would hate to be upset with the neuro if I am totally overreacting over this. Am I? Right now I just feel on edge all the time, like I could cry at the drop of a hat. I am trying to understand myself and I have no idea where to look and without a NAME all I get are scary things and I do not want to worry myself needlessly. But daily, I watch him struggle and I wonder if one of the meds he may need to take would work for him right now if he were on it or if there was something else we needed to do but have no idea about since we have had NO feedback from the dr at all since she said the biopsy came back positive. I am not sure how much longer it will be, but the longer this drags on, the harder it is to deal with it.

Ugh! Ok...now that we got that out I feel a little bit better. I have not been updating much since there is really not much to update. Nathan wants to walk so bad. He has been taking a few steps here and there and wears himself out so badly just from that that his legs and trunk get all shaky and he loses balance and falls a lot. He is working though! Nicholas has been in OT and PT for a couple of weeks now and is making good progress. We are looking into weighted items like a vest for him since he is having increasing difficulty with his sensory issues.

Both Nicholas and I have been battling another recurrence of staph abcesses. I have one and Nicholas has 2. We have decided we are going to assume the whole family is colonized and treat us ALL to see if we can get rid of this once and for all. It is getting to be really OLD dealing with this! Doug and I deep cleaned most of the house over the past week and we are hoping this will help also. It seems that lately with everything going on, we have just been superficially cleaning when we can...the house was clean, but cluttered and probably in need of a deep clean anyways.

Other than that we are hanging out here in limbo-land just waiting on answers so we can move ahead. Fortunately, tho the Shriners appt did not work out, we are going to be working through MDA to get at least AFO's for Nathan. He will also have an equipment eval which the PT was excited about. She thinks he will proably need a wheelchair type stroller since it looks like he will be headed to the PPCD program and will likely need something to transport him that has bus tie-downs. I am saddened by this, but I will do whatever is best for them and if this is what he needs, then so be it. After seeing how fatigued he gets by taking only a few steps here and there, I understand the need for something since he will more than likely have issues with stamina and endurance from the myopathy. I guess we will hear what the equipment person recommends when they do the eval.

I hope this finds everyone well. I am sorry for not updating sooner since right now, I am strugling with all this uncertainty and unknown. With all the infections all summer I am feeling very far from my faith and church since we have not been able to go regularly and replenish the peace that chuch brings for me. I am having a hard time realizing how long term this is going to be for Nathan for sure and probably Nicholas and talk of all this equipment is such a blow to the heart. Please keep us in prayer right now as this has not been an easy summer for any of us and it is beginning to take its toll. Thanks to those who regularly come and check in and sign the guestbook with encouragement. It is hard to even come and update anymore with everything and is so nice to know people care when we see the messages left for us. Thanks again, take care, and God bless!

Wednesday, September 20, 2006 3:40 PM CDT

I just need to vent about this for a min since I feel right now like I want to just SCREAM....

Nathan had his muscle biopsy weeks ago...in fact, we are now in week 11 of waiting. We are in limbo mode with him right now and definitely with Nicholas since it complicates things to move forward with testing for him if we are unsure of exactly the issue we are looking for. We are also in the middle of our battle with the insurance over things for the boys they need, but are not covered. We called our neuro LAST Thurs and it is Wed now and we have yet to hear back from her. We have been calling almost daily and nothing. We need her to write this letter before we can send the appeal in and right now we are just wasting time. All summer it has felt like we have been getting the blowoff from her and that upsets me. The last time we spoke, she asked me if he was having emergent issues and when I said no, she kind of got onto me about how I should be happy he was doign ok and to not worry so much since there are kids down in the ICU seizing right now and we are so lucky to not be one of them and to imagine how their parents feel right now. Ok... I know NOTHING about this dx she dropped into our laps 10 wks ago and how am I supposed to know if he is emergent or not? I have never witnessed a seizure before in my life. I have no idea what to look for. He is hand wringing now which concerns me and also seems to kind of blank out while doing so, but I cannot even get her to return a call to ask if it is a problem or not. I know I should be happy that things ar enot worse, but right now I am a parent who has a LOT of unanswered questions and I feel I have a very valid right to feel upset and anxious and want answers. Am I wrong for wanting her to stop pushing us to the back burner to always put other people in front of us? She told us also the last time we spoke that she had several people she needed to talk to to get more information and as soon as she did, she would be in touch and pass the info along. That was probably 6-7 wks ago now. How long should it take for her to speak with people she works with in the same office and get back to me? I am trying not to be unreasonable here, but HOW LONG DOES THIS TAKE? I know her life goes on after taking with us, but ours isn't. It feels like we are frozen in time just waiting. Dh just called up there and left yet ANOTHER msg on her secretary's voice mail. Probably better since the thing we always get told is that she is "so busy right now" anyways. I am tired of having to tell everyone who asks that we still have not heard yet as I am getting pretty certain from others I know who have gone through this process that 11 wks is getting on up there and we should be hearing something soon if not already. I just want to KNOW so I can deal with it and move on with things. And I don't like being made to feel like my concerns are not valid about my child and his future prognosis just because right now he is doing ok and is not emergent. Are my feelings any less valid than any other mother who has a child who has been dx with a chronic disorder...whether it be emergent or not? I am not sure if I am being unreasonable or not and I would hate to be upset with the neuro if I am totally overreacting over this. Am I? Right now I just feel on edge all the time, like I could cry at the drop of a hat. I am trying to understand myself and I have no idea where to look and without a NAME all I get are scary things and I do not want to worry myself needlessly. But daily, I watch him struggle and I wonder if one of the meds he may need to take would work for him right now if he were on it or if there was something else we needed to do but have no idea about since we have had NO feedback from the dr at all since she said the biopsy came back positive. I am not sure how much longer it will be, but the longer this drags on, the harder it is to deal with it.

Ugh! Ok...now that we got that out I feel a little bit better. I have not been updating much since there is really not much to update. Nathan wants to walk so bad. He has been taking a few steps here and there and wears himself out so badly just from that that his legs and trunk get all shaky and he loses balance and falls a lot. He is working though! Nicholas has been in OT and PT for a couple of weeks now and is making good progress. We are looking into weighted items like a vest for him since he is having increasing difficulty with his sensory issues.

Both Nicholas and I have been battling another recurrence of staph abcesses. I have one and Nicholas has 2. We have decided we are going to assume the whole family is colonized and treat us ALL to see if we can get rid of this once and for all. It is getting to be really OLD dealing with this! Doug and I deep cleaned most of the house over the past week and we are hoping this will help also. It seems that lately with everything going on, we have just been superficially cleaning when we can...the house was clean, but cluttered and probably in need of a deep clean anyways.

Other than that we are hanging out here in limbo-land just waiting on answers so we can move ahead. Fortunately, tho the Shriners appt did not work out, we are going to be working through MDA to get at least AFO's for Nathan. He will also have an equipment eval which the PT was excited about. She thinks he will proably need a wheelchair type stroller since it looks like he will be headed to the PPCD program and will likely need something to transport him that has bus tie-downs. I am saddened by this, but I will do whatever is best for them and if this is what he needs, then so be it. After seeing how fatigued he gets by taking only a few steps here and there, I understand the need for something since he will more than likely have issues with stamina and endurance from the myopathy. I guess we will hear what the equipment person recommends when they do the eval.

I hope this finds everyone well. I am sorry for not updating sooner since right now, I am strugling with all this uncertainty and unknown. With all the infections all summer I am feeling very far from my faith and church since we have not been able to go regularly and replenish the peace that chuch brings for me. I am having a hard time realizing how long term this is going to be for Nathan for sure and probably Nicholas and talk of all this equipment is such a blow to the heart. Please keep us in prayer right now as this has not been an easy summer for any of us and it is beginning to take its toll. Thanks to those who regularly come and check in and sign the guestbook with encouragement. It is hard to even come and update anymore with everything and is so nice to know people care when we see the messages left for us. Thanks again, take care, and God bless!


Melody

Thursday, September 7, 2006 10:21 AM CDT

I feel like I am constantly trying to play catch up with this website lately! I knew when I went from daily updates that this would probably happen and I feel badly for it. Sorry everyone!

We have has a lot going on recently. First off the best news...NATHAN'S EAR TUBE IS NOT BLOCKED ANYMORE!!! Somehow, by some miracle, the tube is clear! I guess the peroxide did work after all! Whatever the reason, he has been sleeping better at night, despite the still nasty nose and junkiness, so I am hoping to see that improve soon since the tube is no longer blocked. We do not have to go back to the ENT for 6-9 mos unless something else comes up...well, it better not!!! So, whew...we avoided the OR again!

Yesterday, the boys had their big immuno appt at TCH and I am glad to say it went well. We liked the dr and she was very genuine and did not play games or patronize us, so that made it all the better. She seemed very knowledgeable and took our boys and our concerns very seriously and respected all our questions. I think it went well. Man was it a LONG day for us! They had a no show right after our first appt was scheduled and it allowed us to do the boys together and not have to do one at 9:30 and come back for the second at 1:30. Anyways, we had gone thorugh all the med records we have last night and made copies for the immuno of all the labs we had run that were NOT from TCH and on their comp system. I even went through and highlighted all the areas of concern to make it easier. I swear I am getting too anal about this med stuff! They seemed to really appreciate having it, though and were referring back to it, so I guess it was a good thing to have done. We met with a fellow first who took down the boys' med histories. That took a while. She then examined them and then left to talk with the dr. It was forever until the dr came in to talk with us. Meanwhile the natives were really restless and Nicholas did about 30 laps around their hallways with Nathan's walker. Once the dr came in we went over everything. She was concerned that Nicholas seems to have this apparent loss of antibodies so soon after making them. He does make them, which is good, but does not retain them, which may not be good. She said only time will tell how much this will affect him, but it needs to be watched closely so we will need to go in every 3 mos for checks with her and she will be drawing Ig levels and titers every 3 mos when we go in to see what the antibody levels are doing. Something else of concern was how low Nicholas' lymphocytes get when he is sick. I noticed this when I was going through the records last night. Every CBC done while ill showed a low level of lymphocytes. The low normal is 4,000 and Nicholas' lowest level was 644 and he also had 855, 2919, 3275 and some between 3400 and 3800. She was concerned with this and ordered a CBC to be done while he is well to see what it looks like when he is not sick and see if the levels look more normal. She was also concerned over his neutrophils and wanted to see those as well. She did also say that she thought the sudden jump in IgG we saw on his last labs was odd, but hoped it was a promising sign instead of a fluke, but she ordered the Ig levels to be redone to be sure. She ordered another test...an oxidation blast (?) I think as well and I have NO idea what that is or what she is looking for. In the mean time, we stay on the same track, but will keep a closer eye on things and see where they head. With Nathan, he did not have pneumo titers redone after his last immunization for some reason...we assume an oversite or mistake, so those were redrawn today to see how they look along with a redraw of his Ig levels too. He also got the intradermal testing done for the Candida, TB, and Tetanus to see how he reacts. Needless to say he was NOT a happy camper about that. He also had a couple of other tests run, but after today, my brain is so fried I cannot even remember what it was. We got there at 9:20 and left the office at 1:30 to go downstairs to the lab for the blood draws. It was a good appt and I was happy with this dr. I am glad she wants to keep a close eye and I am glad she took our concerns about the loss of antibodies seriously. She is not recommending IVIG right now, but she is reserving the option to revisit that at a later date depending on how things look in the future. So, we should get the Ig levels back by Fri she thought and the others in about 10 days and she will be in touch. I have been saying that if we walk out of there with answers, a plan, something, that I would have gotten the best birthday present I could have asked for this year. Not sure we got that exactly, but I do know I feel a lot better about the way this is all headed now that we have this new dr on board. so, I guess this was the next best thing to answers and it seems like we definitely have more of a plan than we did before, so overall I am happy.

And as for the Shriners situation...ugh. We got denial letters and they have really not been able to tell us why. They have waffled back and forth and their story keeps changing. We spent a LONG time with them on the phone last Fri trying to get someone to help us and they assured us they would have a dr call us specifically on Tues to see if we could get to the bottom of this whole thing. Well, they were supposed to call us back yesterday and nobody did. Surprise, surprise. We were shocked when the phone call from them came yesterday morning while we were driving to the hospital for the boys' appts. They were still pretty adament that they did not work with neuro issues. When Doug mentioned that it said they did on their website, they backpedaled some and said, well, we do work with some CP kids, but that is different from what your son has. Hmmm...but your letter to us said you did not work with ANY neuro issues. I wish they would quit changing their story. UGH. Anyways, they apologized and asked us if anyone had referred us to MDA. Hmmm...would we be bugging you if someone had? So dh told them no and they gave us a phone number for someone at MDA. Doug called them between appts yesterday and come to find out they have a setup similar to Shriners (probably a lot smaller though) and as long as we get a referral from a dr with the dx he has, it sounds like we are in. They have therapy, gait analysis, seating and equipment evaluation, an orthotics evaluation, and a lot of other stuff there. They said they will pay for up to $2000 for orthotics of whatever the ins does not cover (which for us is nothng), so we would end up paying around the same as we would for an 80/20 with the ins anyways. they will also make sure that Nathan has all the equipment he needs as well. If we get in our referral this week, they said they could probably get us in sometime in Oct! So, anyways....that is our great news! I guess something good did come out of our hassle with Shriners....they did help us in a roundabout way. So I think it will all work out...

Anyways, that is all for us these days. thanks to all who stop by and visit. We truely appreciate it. Know we think of everyone who stops by here and thinks of our boys, Special thanks to those who take a moment to sign the guestbook. It means a lot to us. Hope all are well. Take care and God bless!


Melody

Thursday, August 24, 2006 9:18 PM CDT

Every time I come for an update, the next day is another thing I know I will want to update you all about so I keep waiting. I think we finally have a break big enough to stop and catch everyone up on things.

Nathan has the blocked ear tube and has continued to sleep poorly and tug his ear and he now has a yucky nose and BAD cough...back on Xopenex and Rescon GG for him. I do not expect to hear the clog is gone when we go back in for the follow up on Mon after the way he has been acting this week. I am hoping to avoid the OR again, but not sure we can put this off too long with how yucky he is feeling.

Nicholas came down with a cold over the weekend and is on Xopenex and Extendryl and seems to be doing better. He was feeling badly this weekend...he just wanted to lay around which is highly unlike him. I knew he felt awful.

Nicholas had his PT and OT evals yesterday to see if he needed therapy or not. I knew deep down how it was going to turn out, but you know how you always want to be kind of optimistic until you hear for sure? Turned out to be not quite exactly what I expected though. I was expecting hom to qualify for sure in OT and maybe PT and it turns out he was better in OT than PT even though he needs both, and weekly for each at that. I was really surprised at that. It was hard to hear he has not met most of the 3 yr old milestones, though I knew he hadn't and she actually said she was honestly shocked at how well he has learned to compensate and do as much as he can do with how weak his legs are. She was amazed he could do as much as he can do since she said logically, he shouldn't be able to do most of those things with the degreee of weakness he has in his lower extremeties. I guess they weren't kidding when they nicknamed him the "King of Compensation" in ECI. He has never let anything stop him from achieving what he wants. Thankfully he at least has that going in his favor right now. She expressed big concern over his ankles and how much they are pronated and how much his knees go backwards when standing due to the poor ankle alignment. We have watched them get progressively worse over the summer and we had made an appt through ortho at TCH to have him evaluated, but that is not until Dec. I am going to bite the bullet and take him back to the ortho (who we saw the last time and who blew us off) this coming Mon morning. With the high likelihood he is going to have the mitochondrial myopathy like Nathan, he really needs to be seen again and I am not sure we can afford to wait another 5 mos for that. We have an appt with ortho for Mon morning and I am hoping we can get this straightened out somehow. In the mean time, we are fighting with ins about getting AFO's covered, but it looks like the only way that will happen is to appeal, which could take months. We are now looking into seeing if we can get the ortho or another dr to refer us to Shriner's Orthopaedic Hospital here in town. From what I understand, they provide free care to kids with orthopaedic needs, including bracing as well. I hope they can help us as with 2 in AFO's will cost us over $5000 out of pocket without ins. Anyways, he starts OT next week for weekly visits and PT in 2 wks after this therapist returns from time off for weekly visits with her as well. Now I am going to be meeting myself coming and going with the boys for therapy it looks like. Nathan sees 3 and Nicholas now sees 2. I am sad, but glad that he will now be getting the help he needs. I hope it helps...

Nathan had his swallow study today and that was quite interesting to say the least. We were very lucky and got the same SLP who did all 3 of Nicholas' study. She saw me and thought she had done Nathan before and I told her it was actually his big brother's she had done and she was excited to see the baby as the last time we saw her I was pg. She remembered Nicholas and his issues well...very impressive I thought. Nathan's swallow study could have been a carbon copy of all 3 of Nicholas'. He had reduced bolus formation, poor tongue lateralization, and laryngeal penetration just like Nicholas. She saw no frank aspiration, but Nathan did not do his normal choking while drinking routine either, so that did not help. The assumption is that the aspiration IS from swallowing though since he has the penetration. He also mashes harder solid food with his tongue before swallowing it whole and softer solids (like noodles) he does not even attempt to chew before swallowing whole. Nicholas also did this SAME thing. The therapist was just amazed at the similarity and kept commenting on it. She also was shocked he was not in speech therapy yet since he has 2 words and has had all the ear trouble and all, so she is making sure she puts speech therapy needed in his report so we can hopefully use that to help us get services through ECI for that. She said that with myopathy (the muscle weakness) it is not surprising at all that he is lacking in these skills. All in all very informative.

Still no word on the final results of the mito testing. I am getting frazzled with the wait since it has been almost 7 wks now. I know it could take longer, so I am trying not to think on it too much. As soon as we hear, we will update for everyone.

The boys are now sleeping in newly redone rooms. Nicholas has a surfer big boy room with a grass skirt valence, Hawaiian lei drape tiebacks, surfer decorations, and a new wall mural a la mama complete with a surf shack and surfboards. Nathan had his room painted with suns, moons, and stars compliments of mama as well. They are both very happy with their overhauled rooms.

So, I guess that is about all for our clan. Another week down and still smiling! Thanks to all who check in on us. We really appreciate it! A special thanks also to those who take a moment to sign the guestbook. It sure is uplifting and strength renewing to see the support people leave for us. We sure need that some days. Tale care everyone and God bless!


Melody

Thursday, August 17, 2006 9:54 PM CDT

Well, here is the latest news...

Doug had his ID (infectious disease) appt on Mon morning to see if he was able to eradicate the MRSA colonization. We ALL went since Nicholas and I have had recent outbreaks of MRSA and Nathan had an icky looking area on his incision that seemed like it could be the start of an abcess. Doug was tested again to see if he is still colonized and the rest of us were looked at. Nicholas and I checked out since we are doing better. I am still waiting on my incision to close and Nicholas looks great. Nathan was started back on the Bactrim and Bactroban since the spot was red and oozy. He was concerned and said it would not hurt him to take the abx even if he was not infected as it could help protect him from becoming infected in the future while it heals.

The ENT appt on Monday went NOTHING like we had planned. To be quite honest, I was so surprised when we left there. The right ear tube IS blocked. He was hoping that if we used peroxide in the ear canal every night for 2 wks, it would "bubble" the wax blockage out. So far, the jury is out on whether or not it is working, but if the screaming that goes along with it is any indication, I sure hope so. That child could wake the dead every night when he gets the earful of peroxide. If we are unable to clear the blockage, there is a very high likelihood that he will have to go back to the OR to get it replaced. This would be the 4th surgery since March and hard since he can no longer have gas for them to place the IV. Last time it took 40 min and 8 sticks to get 2 poorly placed IVs in. Especially since within the week that we waited to see the ENT, the ear was filled with fluid again since it cannot drain and Nathan was getting fussy and congested and not sleeping well. It is very obvious that he needs the ear tubes to function. Hopefully the Bactrim will help with this as well. Another discovery was the results the ENT got back from testing the lung secretions he took from the bronchoscopy and laryngoscopy. The sample from his lungs tested positive for milk cells, which means he has been aspirating. I had always wondered if he aspirated since he is a silent refluxer and chokes while drinking and refluxing and asked about this all the time, but was made to feel as though I was overreacting, so I let it drop. To find out after all this time that I was probably right makes me sad. The GI was concerned and said he wants Nathan to have a swallow study to see if we can figure out where he is aspirating...from swallowing or refluxing. Depending on the results he may also have a pH probe or emptying scan. The GI is going through the peds office to set this up for us since they are local. I will let everyone know when we are scheduled for that. Not sure what this means as far as meds weaning goes, but it looks like we may not be getting him off the reflux meds anytime soon.

Doug and I went to the eye dr yesterday and that was pretty anticlimactic. Both of us need changes to our lenses...mine the most it has been in years which was surprising. I need both new lenses and a new contact for my left eye. Doug already got his new glasses, but mine have to be sent out since I require the high index lenses for my poor vision. That is usually about 2 wks.

Tomorrrow is a really busy day for us. We are heading out early for TCH to get the boys' blood draws to recheck Ig levels and titers. Then, Doug and I have dental appts that we have been rescheduling for literally 6 mos or more due to illnesses or appts for the boys coming up and taking precedence over ours. After a quick lunch, we will be heading out to have Nathan's AFO's refitted since his left foot is now beginning to hang over the end of the brace. We may be in the market for new ones. I will post soon and let everyone know how the appts went.

Thanks for all the good thoughts and especially thanks to those who have left messages in the guestbook. It has been an especially hard summer and it can be disheartening at times to see nothing new in the guestbook. We can use all the support and prayers we can get right now. Hope all is well with everyone. Take care and God bless!


Melody

Thursday, August 10, 2006 10:42 PM CDT

Oh where to begin??? I almost dread having to update after such hectic times as it is always long and crazy!

Let's see...

Nathan's leg is healing well! YAY!!! FINALLY! We had our last scheduled surgical post op appt on Monday and, unless we have problems (knock wood), we don't have to go back! WOOHOO!!!! He has slight redness of the incision that may be cause for concern, but we are to put the Bactroban ointment on it and keep it covered until the redness goes away. His muscle biopsy final reports are still pending and no word yet as to when we might get the answers we have been waiting for 4 wks to receive. He also has to go into the ENT next week to unblock an ear tube that is clogged with wax. Yuck. I hope that one is an easy one.

Nicholas has been having increasing problems with GI issues. He is pretty much hurting all the way through the GI tract and has been having diarrhea on and off (mostly on) for the past 8 or so weeks. He will start it up, so we dillute feeds with pedialyte and work back up to full feeds as he tolerates it and within a day or so after being on full feeds, the diarrhea starts in again. It has sacraficed SO many calories these past few weeks and it is now affecting his appetite. He is having more issues with eating solids than before and food she usually loves make him feel bad now and he balks at eating them. He has no problems drinking and says milk makes his tummy happy and the food makes his tummy ache. I feel for him. His reflux is flaring worse than we have seen it in a while and he is not doing too well. After consulting with the GI he went into the ped for a KUB (abdominal) xray and it showed no impaction like he suspected. This leaves us wondering what in the world is going on. For a child with constipation issues, this diarrhea is odd and unusual...especially for so long. We are now doing an enema and will call the GI tomorrow with the results of that. Depending on how it looks, he may need a transit study/Sitz marker study done, possible GES (emptying scan), and/or stool samples to rule out infection. Never a dull moment. He just got over another round of abcesses which we are assuming were MRSA...one on the leg and another on the stomach near the stoma. This greatly hampered our ability to go out and do anything fun for quite a while. We have been stuck at home for way too long! He is looking at a probable skin biopsy and possible muscle biopsy when we figure out what is going on with Nathan. He is also going to be evaluated for OT services through private therapy. He went to the dentist and NO cavities! Yeah!

This is our local office of the most recent immuno we saw and we saw the ped dr there who has immuno experience as well. We got there at 1:55 and did not leave until 5:20. Hse k ept popping out of our room to go see others and come right back to continue with us. She was VERY thorough and took plenty of time with us getting through their med histories and testing and all. She was very concerned that we have not seemed to be taken very seriously by the other immunos we have seen and was SO glad we were going to see this one immuno at TCH since she used to work with her and they have worked together on many patients. She said both were too complicated for them NOT to be seen by someone there at thispoint. There is just too much else going on with them health-wise for her to feel comfortable recommending anything less than that right now, but she wants to be able to be a local dr for us to see when they are sick and such so we din't always have to go downtown. She said that, after 2 yrs of testing and revaxing, if we were going to see improvement, we should have already started seeing it by now and that his IgG levels are pretty much as bad as they were when he was first tested at 20 mos old. His constant GI issues were a concern as well and she said at this point she is concerned about function since he is losing immunities. She said everyone will lose them in 6-10 yrs, hence the need for boosters, but nobody should be losing them in 18 mos or less. Nicholas has already lost protection from pneumococcals twice and diphtheria once. She said with Nathan, it is too soon to tell with him since he is so young and is not wuite finished with vaccines yet. We will not know if he has the same problem with retention until enough time can pass between a vaccine and we can test and see what it does. She said for either of them, once a year monitoring is not nearly enough and they need monitoring every 3-4 mos. She said she was going to call up the ped after she goes over both kids' files in detail and she will talk to him about what he has seen and what they can do to work on keeping the boys healthy.

Can I tell you I was almost in tears in her office? I feel like this is the first time any immuno has REALLY taken the time to listen and try to fit the pieces together. She is also the first person who has listened to my concerns and treated them like they were valid and a real cause for concern and not just blown me off or placated me. I wanted to just hug her I was so relieved. She is going to be getting info from the peds office and taking time to go over the files in detail. she wants us to have the immuno at TCH call her to discuss this after we see her. So, that was our marathon appt...


I have been battling a BAD MRSA abcess on my arm...abcess silver dollar size and cellulitis softball size or bigger. This all while I was on oral abx and 2 skin abx ointments. I had to go into the ER on Sun night to get it lanced and drained and I am taking the previous abx in addition to a new one...over 2000 mg a day! I went to have it checked Tues and it had closed over and I had a huge marble sized lump under the skin. Turns out the infection had solidified and he had to relance it and redrain it and clean it out really good. Now Doug has to clean it out every night and make sure it does not close for another few days. The dr said today it is finally looking ok and I am finally able to do stuff again...Doug has been cooking and my computer time has been severely limited due to pain when typing. I am glad as it has forced me to miss visiting with my sister after her surgery she had a couple of weeks ago. Nicholas has especially missed seeing her and the boys.

Doug has been the only healthy one but has been doing ok with work. He is finished with his first project assignment and is now moved to a different building and working on a new project. This one should be more long term, but thankfully, they are really busy! Doug is getting tired of moving around already...this is his 3rd cubicle!

Guess that is about it on the home front. We have some upcoming appts that should prove to be interesting. I am sure we will have more that are not scheduled just yet as well. We will keep everyone posted! Thanks for all the thoughts and prayers. We sure appreciate it. Please remember our MN friends in your prayers if you can as well. They have had some hard times health-wise recently and could use the extra thoughts right now. Take care and God bless!


Melody

Sunday, July 30, 2006 11:41 AM CDT

Just talked to the surgeon...No fever this morning!!! The incision is only a tiny bit red now and is no longer hot to the touch!!! No trip to TCH!!! YAY!

We still have to go into the clinic tomorrow for him to look at it, but he feels it is healing well. Due the the crusty and weepy nature he feels it is pretty likely it is some sort of Staph infection, maybe MRSA , but whatever it is seems to be responding very well to the Bactrim. He said to stop the Neosporin since it sounds like the pimply rash is probably yeast and the ointment will kill the bacteria, but allow the yeast to spread. After he looks at it to be sure of what it is, he may give us a rx for Nystatin cream for it. The tape rash he said could be fixed by something called Coban...a bandage material that will stick to itself and not to the skin. And, he wants us to start leaving it more open to the air. I am REALLY nervous to do this because of all the problems we have had, but I think we need to at least a little bit. Maybe just at home so it will be in a controlled environment.

Anyways, just thought I would update with the good news! Thanks again for the continued prayers. I hope we are finally seeing the light at the end of this tunnel. Take care and God bless!


Melody



Saturday, July 29, 2006

Today we decided to try to keep Nathan still...so we ran errands and I would run out of the car and Doug would wait with the kids in the car. Nathan really enjoyed watching some shows in there and took a nice long nap and sat STILL all afternoon! I think that helped.

The GOOD NEWS: We just took his temp and it was 100.2, so it is way down from last night. He has had 3 doses of Bactrim so far and it seems to be knocking out whatever has been bothering him. I think we may avoid the OR tomorrow. I am keeping cautiously optimistic!

The BAD NEWS: He has been tearing off the bandages every chance he gets. The Medipore tape we have been using to avoid a tape reaction (since we were not sure he has it) does not stick back down once it has been removed. We tried the clear hospital tape and now he has a TERRIBLE rash! I think it is a tape allergy, but not sure. It is raised red whelts in irregular splotches all over the outside edges of the tape...probably 2/3-3/4 of the way around the perimeter of the taped edges of the gauze but not under the gauze. There are also some pimply looking spots under the bandage, but it does not look like it is related to the other rash. If it is a tape allergy (which I am suspecting at this point it is...both my mom, myself, and Nicholas are all tape sensitive), it will be interesting to see how we can use cream on the rash and STILL have the tape stick to the skin. Hmmm....

Other than that, the incision is a little red, but not bad and it is also crusty and weepy. I hope this is the healing process. I am hopeful we will be ok when we talk to the surgeon in the morning. Just thought I would update. Thanks for all the good thoughts, everyone. I truely appreciate them. Take care and God bless!



Friday, July 28, 2006 11:50 PM CDT

The saga of Nathan's leg continues. His leg had been doing SO well up until yesterday. I saw a dark spot on his bandage and decided to change it and see what was going on. It was blood! I about died! After 6 days of good healing and then this! We were supposed to be meeting up with out of town friends after lunch and we had to run him into the surgeon's office downtown before 2. Well, it turns out his body was rejecting the drain tube. Since it was almost time to remove it anyways, he just cut it and took it out. We were told to go back to see the surgeon in 10 days to get it checked again.

Well, this morning, that little imp had pulled the bandage off and the first thing I saw laying in the crib when I went to get him up was a bunch of steri-strips! Yep...you guessed it! That little stinker ripped them ALL off last night or this morning before we got him up! I think the incision is ok, but I put some neosporin on it and bandaged it back up again. I think I am going to go gray soon from all this drama! Well, sadly, that is not the end of the story...

I just had to call the surgeon again...Nathan is now running a fever of 102.1 . The surgeon is calling in Bactrim for him. The incision was not quite all the way closed this morning and now it is surrounded by red and feels warm to the touch compared to the rest of his leg. He feels there is a good chance it is infected at this point and is worried about MRSA since we have had it in the house and both boys have had it already and are more prone to it. He wants us to soak it 2x/day this weekend and treat him as NPO after midnight Sat night. We are to call him Sunday morning and report on how it is doing. If it is not better or any worse, we have to bring him in and he may have to take him back to the OR and reopen it to allow it to drain. If it is worse tomorrow, we have to take him right in and have the surgeon on call tomorrow look at it.

When will this be over??? This has been an ABSOLUTE NIGHTMARE from the get go! I just want to scream out of frustration and for the suffering of my baby! Why can this just not heal like it is supposed to??? This should have been healed long before now!!! I HAVE HAD IT with this!!!!! Please pray for him to heal with the meds so we won't have to go into the OR for a 3rd time for all this. He has been through so much already and has had a really rough night. I am so fed up and tired of watching that poor sweet baby suffer through all this mess! Whoever said this would be easy sure has not met one of my kids...for some reason neither of them is happy going the "normal" route. Ugh! If there is a rare complication or a tiny chance something will/will not happen, they are the ones to jump right in with both feet! It is getting a bit tiresome to say the least!

At least this was not all done in vain. We got preliminary biopsy results back last week that were "consistant with Mitochondrial Myopathy", which is a category of Mitochondrial Disorder. We were hesitant to post this information since this is all we know. We have no specific dx yet as to which form of Mito he has. This testing will take 4-6 wks at the least to complete. What does this mean? Well, until we find out the exact form of Mito he has, we are unsure. It certainly does explain a lot about the many issues we are seeing. It also more than likely explains why we are seeing such similar issues with Nicholas. Once they identify the form of Mito Nathan has, Nicholas will be tested for it as well. We are hoping to only have to do a skin biopsy for him since they will know exactly what they are looking for this time. We are understandably saddened by this dx but we are also filled with hope. Now that we know what we have been chasing down for so long, we are going to be able to know more specifically what to do to help them and that makes me more relieved than anything right now. I just want to help my babies as much as I possibly can and give them every chance they can at a "normal" life.

Any prayers you offer up for us would be gratefully appreciated. This has been a very rough past month for our family. We will keep you posted...

Oh, and the last journal entry has some pictures in case you missed them. Just click on Journal history to view them. Take care and God bless!

Friday, July 28, 2006 11:50 PM CDT

The saga of Nathan's leg continues. His leg had been doing SO well up until yesterday. I saw a dark spot on his bandage and decided to change it and see what was going on. It was blood! I about died! After 6 days of good healing and then this! We were supposed to be meeting up with out of town friends after lunch and we had to run him into the surgeon's office downtown before 2. Well, it turns out his body was rejecting the drain tube. Since it was almost time to remove it anyways, he just cut it and took it out. We were told to go back to see the surgeon in 10 days to get it checked again.

Well, this morning, that little imp had pulled the bandage off and the first thing I saw laying in the crib when I went to get him up was a bunch of steri-strips! Yep...you guessed it! That little stinker ripped them ALL off last night or this morning before we got him up! I think the incision is ok, but I put some neosporin on it and bandaged it back up again. I think I am going to go gray soon from all this drama! Well, sadly, that is not the end of the story...

I just had to call the surgeon again...Nathan is now running a fever of 102.1 . The surgeon is calling in Bactrim for him. The incision was not quite all the way closed this morning and now it is surrounded by red and feels warm to the touch compared to the rest of his leg. He feels there is a good chance it is infected at this point and is worried about MRSA since we have had it in the house and both boys have had it already and are more prone to it. He wants us to soak it 2x/day this weekend and treat him as NPO after midnight Sat night. We are to call him Sunday morning and report on how it is doing. If it is not better or any worse, we have to bring him in and he may have to take him back to the OR and reopen it to allow it to drain. If it is worse tomorrow, we have to take him right in and have the surgeon on call tomorrow look at it.

When will this be over??? This has been an ABSOLUTE NIGHTMARE from the get go! I just want to scream out of frustration and for the suffering of my baby! Why can this just not heal like it is supposed to??? This should have been healed long before now!!! I HAVE HAD IT with this!!!!! Please pray for him to heal with the meds so we won't have to go into the OR for a 3rd time for all this. He has been through so much already and has had a really rough night. I am so fed up and tired of watching that poor sweet baby suffer through all this mess! Whoever said this would be easy sure has not met one of my kids...for some reason neither of them is happy going the "normal" route. Ugh! If there is a rare complication or a tiny chance something will/will not happen, they are the ones to jump right in with both feet! It is getting a bit tiresome to say the least!

At least this was not all done in vain. We got preliminary biopsy results back last week that were "consistant with Mitochondrial Myopathy", which is a category of Mitochondrial Disorder. We were hesitant to post this information since this is all we know. We have no specific dx yet as to which form of Mito he has. This testing will take 4-6 wks at the least to complete. What does this mean? Well, until we find out the exact form of Mito he has, we are unsure. It certainly does explain a lot about the many issues we are seeing. It also more than likely explains why we are seeing such similar issues with Nicholas. Once they identify the form of Mito Nathan has, Nicholas will be tested for it as well. We are hoping to only have to do a skin biopsy for him since they will know exactly what they are looking for this time. We are understandably saddened by this dx but we are also filled with hope. Now that we know what we have been chasing down for so long, we are going to be able to know more specifically what to do to help them and that makes me more relieved than anything right now. I just want to help my babies as much as I possibly can and give them every chance they can at a "normal" life.

Any prayers you offer up for us would be gratefully appreciated. This has been a very rough past month for our family. We will keep you posted...

Oh, and the last journal entry has some pictures in case you missed them. Just click on Journal history to view them. Take care and God bless!


Melody

Monday, July 24, 2006 10:59 PM CDT

We left the bandages from the last surgery on Nathan's leg for an extra day out of sheer fear of it not staying closed this time. Good news! The surgeon must have used about 10+ steri-strips on it and EVERY single one is stuck down tight to his skin! He did them across the incision next to each other all the way down and then made 2 big X's with more over the top of those...guess he did not want to take any chances this time!! The drain tube has kept the little bit of fluid build-up draining and it looks wonderful!! I think we got it this time! Man am I glad we went back in...it is going to heal in a little line exactly like it should have instead of a huge ugly scar! I am so happy it is looking so much better this time!

Now I am about to make everyone really happy and post some pics...I am in SUCH a good mood tonight, so I am going to pelt you with as many pics as you can stand! Here goes...

Doug and I were feeling so bad that Nathan has not gotten to enjoy swimming very much this summer. The pool is off limits for the time being due to his leg, but the bathtub is not. So, we were at Target yesterday and found the perfect pool for him! It is only about 3-4 in deep when full and when he sits in it, the top of his thigh is up out of the water. It has a slide and sprayers and a cool ring stacker and he LOVED it! Needless to say Nicholas did too! What a great buy as it was on clearance, too! Here are some pics from tonight...their first time in it...

The whole pool...


The boys playing...


Nathan...


Nicholas...


Our little Ravioli man from dinner tonight...


Ok...as promised...here are some vacation pics we took while in San Antonio...

We spent the afternoon after the boys' appt at the Children's museum. This was a COOL place! They had a small airplane, a travelling castle exhibit, musical instruments (which my little musician Nicholas LOVED), a mining area where you could look for gemstones, a fossil dig, and tons of other stuff including a small area just for the little guys to play.

Nathan enjoying a fossil dig...


Nicholas and daddy flying the plane...


Nathan playing in the area just for little guys...


Nicholas making a ramp for a ball out of little plastic cards...


We spent Saturday at Sea World. Nicholas was so excited to see Shamu! We watched several shows, Nicholas got his face painted, they made rice grain necklaces with their names on it, and saw some really cool animals! Nicholas even got to ride on his first amusement park rides! He is FINALLY tall enough for a couple of them!

Here is Shamu in the new show, Believe...





Some sea lions and a walrus in another show...





Two exhausted boys after a long day...



Sunday we went to the Natural Bridge Wildlife Safari Park. Man was this place cool! Included in admission was a bag of food pellets to feed the animals and you could buy more bags for $1/bag. These animals came right up to the car and would eat right out of your hand! They had all sorts of African hooved animals like Addax, Llamas, Antelope, Kudus, Gazelle, Sheep, Wildebeast, Elk, and Deer. They also had Ostriches, Emus, Rhinos, Zebras, Giraffes, a huge Longhorn, and a Buffalo! We were in our cars...but we did ride with the windows down. It was super cool except when ther animals got pushy and went up so close to the car that they were practically inside the window. Then, we were stuck there since they were too close to the car for us to just drive away. Doug had to roll up his window once for a particularly insistant ostrich. Luckily the ostrich got the message and finally left.

We had to stop for this ostrich walking down the middle of the road like he owned the place...



A Barbado Sheep begging for food at the car window...look at that face!



A Llama getting a snack from the car in front of us...



A HUGE Buffalo that would not move so we could drive on...he was licking the ground under our car for the longest time and made a huge wet spot...



My boys playing at the petting zoo...



After this, we hit the outlet mall in San Marcos before heading home. We had such a good trip!

Guess that is about all for the update right now. I know with all the pics that this is REALLY long. Sorry for taking so long to post them! Thanks to everyone who supports us through this site. Take care and God bless!


Melody

Friday, July 21, 2006 2:29 PM CDT

I am really beginning to think we are stuck in a freakish episode of Groundhog day where we take Nathan in again and again for surgery. All the same people even...what a crazy day!

Everything went well. The surgeon said that, although it looked like it was healing well, he thought it would be a much better idea to basically start over from scratch and do it all over again. So, he cleaned out the wound really well and cut all the tissue growth off the sides of the wound down to new tissue and then stitched it closed tightly as if it was a new incision. He did put in a double ended surgical drain so that, just in the case of another fluid pocket forming, it would not be able to do the damage it did last time. So, barring anything unusual (knocking wood!), he shoul dbe able to have the bandage removed in 48 hrs again and if all looks good, he can even go swimming in a few days!

Anesthesia is now a new adventure as Nathan cannot have any gas products in the mask to sedate him. Sadly, at TCH they use the gas to help the child sleep so they can place the IV. Since Nathan cannot have any gas now, they had to give him oral Versed (which was nasty and he spit half out) and give him some Nitrous oxide so they could place the IV and give him the rest of the anesthesia. A 20 min procedure turned into almost an hour since it took them more than half the time to place the IV. What a mess. He came through fine and his sats were great! A little nausea, but after he was awake, he screamed and tried to yank all the IV's out (he had 2). He was signing to the nurse to pull them out and did not really stop screaming and calm himself until we were in the car on the way home. That made for a VERY long 2 hrs in the PACU.

So, that is our little update. I am SO hoping this is the last surgery one for a VERY long time!

I will update more this weekend along with the promised pictures. Right now I am off for a nap as I am beat! Thanks for thinking of us! Take care and God bless!


Melody

Thursday, July 20, 2006 10:18 PM CDT

Just a quick update before tomorrow. Nathan will go in tomorrow morning to TCH to have the procedure done on his leg wound to try and loosely close it and insert a surgical drain. He goes back for this procedure at 9:00, so we will be there around 7:30. I am hoping things go smoothly this time and we will be out of the PACU more quickly than last time. Please be in prayer for him as new developments (which I will update you all on later) will make it more dangerous for him to have anesthesia. Thanks to you all for your continued support. Words cannot express how much we appreciate it! Take care and God bless!


Melody


Tuesday, July 18, 2006 0:28 AM CDT

We went into the surgeon this morning for Nathan's weekly wound check. The surgeon said it was looking like it was healing well, but the wound has spread open wider than it was before. The granulation tissue is growing up from the inside and pushing the opening wider apart. He said at the rate that this is healing, it would take several weeks and possibly several mos to heal completely. The surgeon suggested taking him back into the OR and putting 2-3 loose stitches into the top to try to pull the incision closer together, while still leaving it open to heal. He would also place a surgical drain to allow for continued drainage. This would minimize scarring and speed up the healing process. He said there is a small risk of infection, but probably no more than leaving it open, plus we would not have to subject Nathan to the daily dressing changes and wound packing that he screams through daily.

He left the decision up to us. He said it would be fine to leave it as is and allow healing that way, but it will take MUCH longer and the scar would be MUCH bigger...not to mention the stress and pain of the daily wound packing and changing. Or, we can put him through another sedation (which we were trying to avoid by doing multiple procedures at once), deal with a surgical drain at home for a short while, and hope that it heals faster and better. The biggest problem he has with the whole general anesthesia process is the intubation because of his airway. The surgeon said since it is such a short procedure he would not even need to be intubated if we did not want him to. He also said that this is something they would usually just do in the office with a local were it not for his age. He wants to be sure he is comfortable and not fighting them due to the location and how hard it would be to stitch if his muscle were flexing, so they need him relaxed. I just want to make sure I make the right decision for him. He has already suffered so much already from this. I just hate not knowing which would be the better option as both would allow it to heal eventually. I just have NO idea which is better and am stressing out over what to do! We have it tentatively scheduled for Fri to get us on the schedule as we have to move quickly if we want to do it, but we can always cancel if we change our minds.

Tonight's wound dressing change went ok. We have started to debried (?) the wound with water sprayed from a Peri bottle and then repack the wound with the saline soaked gauze. This is the part that is the most tortuous for him. I think the saline stings the wound as it is all open flesh. The rest seems to be ok with him, though I can tell he knows what is coming and starts whimpering when we are about to start. Poor baby.

We went away this past weekend to San Antonio for the boys' GI appts. We actually got a little bit of sleep after the ER and before going to San Antonio, which was nice. This was the first time I was REALLY glad we had already decided to stay since driving back on 2 hrs of sleep in the dark for 3 hrs sounded seriously unpleasant.

The boys saw the GI and the appt went really well. The only major thing we came out with was med changes. Nathan is overeating, which we knew. The GI wants to drop the morning dose of Prevacid to see if he can tolerate the lower dose and also hope that some acid will decrease his appetite some. So far, it seems to be working and he is not eating quite as much as he was before...seems like a more normal amt for a baby his size/age. He is having some really yellow acidy looking diarrhea that is giving him horrible diaper rash, but I am hoping this is just an adjustment to the lowered dose. Nicholas got his 2 7.5 mg doses of Prevacid moved to one 15 mg dose at bedtime to see if allowing him some time with acid in his stomach during the day will help eliminate the bacteria that has been plaguing him with diarrhea tummy bugs lately. So far, no change, but he did start another bout with the diarrhea yesterday after getting over the last one from early last week. Every time this happens, he has to have feeds dilluted with pedialyte until he can tolerate upping the formula once the diarrhea is under control. This has been wreaking havoc with his weight gain lately...and he *was* doing well, too. He also is getting his Reglan reduced from 2 doses of 2 ml to one dose of 2.5 ml since he has been having some extreme mood swings/behavior issues and the GI is worried that the Reglan might be causing a buildup in the brain. I am not convinced, but I am willing to try it to see. So far no improvement, and no affect on motility either. I just hope it does not mess with the GI issues any.

He also wants us to start Nicholas on this additive called Nestle Additions. It is a calorie enhancer sinilar to Duocal and stuff I guess. 2.5 tablespoons=100 cals. I am not sure how this is going to work as Nicholas only eats dry cereal for breakfast and major staples of food like cheese toast and apples and other fruits I am guessing will not work with this stuff. He needs over 600 cals from it to drop the overnight feed like the GI is hoping for. If he eats the full 2.5 tbsp at every meal, that is still only 300 cals. I am willing to give it a shot though. They are also getting a full time dietician at their office, so Nicholas will get his first appt with one at the next appt in Sept. For now, no more day feeds.

We talked about Nicholas' height and whether or not he might one day need growth hormone inj. He said Nicholas is borderline for that and since Doug and I are not tall people, it makes it hard to judge if he is small because of that, the GI issues, or some other reason. His growth has been very slow, but also relatively stable, so who knows. Doug and I are not ready to pursue anything like that right now anyways, so I am glad there is no immediate need to adress that issue right now.

Other than that, things are looking ok. Nicholas was 29 lbs and 14 oz and almost 37 in tall at 3.5 and Nathan was 24 lbs 4 oz and 30 in long at almost 16 mos.

The GI was showing Nicholas pictures of his wife's new pony and was surprised to hear Nicholas has been riding since he was 14 mos. Nicholas loved the pics and the GI said sometime he might just have to invite us out so Nicholas could have a ride. I thought that was so nice of him. He is a great guy!

The rest of the weekend was spent at the Children's museum, the Riverwalk, Sea World, visiting with friends, this Animal Safari park, and shopping at the outlet mall. I promise the next update will be all about the weekend and complete with pics. For now, this update is getting to be TOO long!

Thanks for all of you who have shown support for us through everything...it sure means a lot! Take care and God bless!

Tuesday, July 18, 2006 0:28 AM CDT

We went into the surgeon this morning for Nathan's weekly wound check. The surgeon said it was looking like it was healing well, but the wound has spread open wider than it was before. The granulation tissue is growing up from the inside and pushing the opening wider apart. He said at the rate that this is healing, it would take several weeks and possibly several mos to heal completely. The surgeon suggested taking him back into the OR and putting 2-3 loose stitches into the top to try to pull the incision closer together, while still leaving it open to heal. He would also place a surgical drain to allow for continued drainage. This would minimize scarring and speed up the healing process. He said there is a small risk of infection, but probably no more than leaving it open, plus we would not have to subject Nathan to the daily dressing changes and wound packing that he screams through daily.

He left the decision up to us. He said it would be fine to leave it as is and allow healing that way, but it will take MUCH longer and the scar would be MUCH bigger...not to mention the stress and pain of the daily wound packing and changing. Or, we can put him through another sedation (which we were trying to avoid by doing multiple procedures at once), deal with a surgical drain at home for a short while, and hope that it heals faster and better. The biggest problem he has with the whole general anesthesia process is the intubation because of his airway. The surgeon said since it is such a short procedure he would not even need to be intubated if we did not want him to. He also said that this is something they would usually just do in the office with a local were it not for his age. He wants to be sure he is comfortable and not fighting them due to the location and how hard it would be to stitch if his muscle were flexing, so they need him relaxed. I just want to make sure I make the right decision for him. He has already suffered so much already from this. I just hate not knowing which would be the better option as both would allow it to heal eventually. I just have NO idea which is better and am stressing out over what to do! We have it tentatively scheduled for Fri to get us on the schedule as we have to move quickly if we want to do it, but we can always cancel if we change our minds.

Tonight's wound dressing change went ok. We have started to debried (?) the wound with water sprayed from a Peri bottle and then repack the wound with the saline soaked gauze. This is the part that is the most tortuous for him. I think the saline stings the wound as it is all open flesh. The rest seems to be ok with him, though I can tell he knows what is coming and starts whimpering when we are about to start. Poor baby.

We went away this past weekend to San Antonio for the boys' GI appts. We actually got a little bit of sleep after the ER and before going to San Antonio, which was nice. This was the first time I was REALLY glad we had already decided to stay since driving back on 2 hrs of sleep in the dark for 3 hrs sounded seriously unpleasant.

The boys saw the GI and the appt went really well. The only major thing we came out with was med changes. Nathan is overeating, which we knew. The GI wants to drop the morning dose of Prevacid to see if he can tolerate the lower dose and also hope that some acid will decrease his appetite some. So far, it seems to be working and he is not eating quite as much as he was before...seems like a more normal amt for a baby his size/age. He is having some really yellow acidy looking diarrhea that is giving him horrible diaper rash, but I am hoping this is just an adjustment to the lowered dose. Nicholas got his 2 7.5 mg doses of Prevacid moved to one 15 mg dose at bedtime to see if allowing him some time with acid in his stomach during the day will help eliminate the bacteria that has been plaguing him with diarrhea tummy bugs lately. So far, no change, but he did start another bout with the diarrhea yesterday after getting over the last one from early last week. Every time this happens, he has to have feeds dilluted with pedialyte until he can tolerate upping the formula once the diarrhea is under control. This has been wreaking havoc with his weight gain lately...and he *was* doing well, too. He also is getting his Reglan reduced from 2 doses of 2 ml to one dose of 2.5 ml since he has been having some extreme mood swings/behavior issues and the GI is worried that the Reglan might be causing a buildup in the brain. I am not convinced, but I am willing to try it to see. So far no improvement, and no affect on motility either. I just hope it does not mess with the GI issues any.

He also wants us to start Nicholas on this additive called Nestle Additions. It is a calorie enhancer sinilar to Duocal and stuff I guess. 2.5 tablespoons=100 cals. I am not sure how this is going to work as Nicholas only eats dry cereal for breakfast and major staples of food like cheese toast and apples and other fruits I am guessing will not work with this stuff. He needs over 600 cals from it to drop the overnight feed like the GI is hoping for. If he eats the full 2.5 tbsp at every meal, that is still only 300 cals. I am willing to give it a shot though. They are also getting a full time dietician at their office, so Nicholas will get his first appt with one at the next appt in Sept. For now, no more day feeds.

We talked about Nicholas' height and whether or not he might one day need growth hormone inj. He said Nicholas is borderline for that and since Doug and I are not tall people, it makes it hard to judge if he is small because of that, the GI issues, or some other reason. His growth has been very slow, but also relatively stable, so who knows. Doug and I are not ready to pursue anything like that right now anyways, so I am glad there is no immediate need to adress that issue right now.

Other than that, things are looking ok. Nicholas was 29 lbs and 14 oz and almost 37 in tall at 3.5 and Nathan was 24 lbs 4 oz and 30 in long at almost 16 mos.

The GI was showing Nicholas pictures of his wife's new pony and was surprised to hear Nicholas has been riding since he was 14 mos. Nicholas loved the pics and the GI said sometime he might just have to invite us out so Nicholas could have a ride. I thought that was so nice of him. He is a great guy!

The rest of the weekend was spent at the Children's museum, the Riverwalk, Sea World, visiting with friends, this Animal Safari park, and shopping at the outlet mall. I promise the next update will be all about the weekend and complete with pics. For now, this update is getting to be TOO long!

Thanks for all of you who have shown support for us through everything...it sure means a lot! Take care and God bless!


Melody

Friday, July 14, 2006 2:53 AM CDT

Tonight was the night we were to take off the bandage from Nathan's biopsy incision. It had a piece of Tegaderm with gauze underneath it and then steri-strips beneath that that were to fall off when they were ready. Well, as you can probably tell, that is NOT what happened. I had been noticing how much the incision was oozing under the Tegaderm, but the PACU nurse told us not to worry, that some post-op bleeding was normal. So, we watched it continue to bleed and ooze for the past 48 hrs hoping that was normal and trying not to be too concerned. Well, tonight when we took the bandage off, we were certainly not prepared for what we saw! The steri-strips were not stuck down anymore and the incision was a gaping 2 in hole! We had to call the surgeon on call who immediately told us to bring him into the ER for it to be looked at. I have to say...seeing the surgeon is the way to go if you ever have to go to the ER at TCH. We were in and out in about an hour, which is a record for the ER there. Anyways, we got taken straight to a room when we got there and had to wait for the surgeon on call as he was in the OR. He came down and looked at Nathan's leg. Almost the entire 2 in was gaping open about 1/2 in wide. It was very deep and you could see all the way down to the muscle...yuck. Apparently, the site had collected a lot of fluid and blood in a pocket under the skin and had continued draining, keeping the steri-strips moist enough to make them no longer stick. This probably happened not long after the surgery was completed and since the steri-strips were wet, there was no way they were going to hold the site together. He said this is very rare...well, aren't we the lucky ones then! He also said at this late time, even though it looked nice and clean, there was no way to close it up without running a huge risk of infection. So, now Doug and I are trained in wound care. Yep...we have to leave it open and clean it and rebandage it every single day. He said it could take several weeks to close and we will need to set up weekly appts with the surgeons office to monitor the healing process. We were sent home with a big bottle of saline, lots of gauze, and tape. No swimming for the little guy until it is healed completely and we can bathe him very carefully in a little bit of water in the bottom of the tub. I just feel so awful for putting him through this. My poor little baby. It is almost 3 here and we will be getting up in 3 hrs for our 3 hr drive to San Antonio for the boys' GI appts. Not exactly the way I had intended to spend the evening...that is for sure! We will keep everyone posted about his healing.

Take care and God bless!


Melody



Tuesday, July 11, 2006 5:54 PM CDT

We are home!!!!

I so did not think this update was going to be coming from here, but we managed to get sprung after over 5 hrs in the PACU.

The day started with Doug shaking me awake saying OMG the alarm didn't go off at around the time that we should have been dropping Nicholas at my parents' house and heading downtown. I about died! Thankfully, we took both kids in jammies, threw clothes on, and grabbed the meds (which I gave Nicholas on the way). Everything else was packed already, thankfully. We called ahead and they told us not to worry and we were only 15 min late to a 2 hr earlier than surgery pre-op appt. I cannot believe we made such good time! The pedi surgeon had a talk with Nathan and made him promise not to cough in front of the ENT ever again...and luckily (since he has no cough) he didn't! We were taken back and said our goodbyes and let him go. Doug, my mother inlaw, and I went to grab some food, as we had missed breakfast in the rush and then we picked out a small toy for Nathan from the gift shop. After a short 1 hr 10 min, we were able to go back and see him. That is when the fun (not really) started. Nathan was very uncomfortable. He ended up with a dose of Tylenol and Morphine right off the bat. When it was evident that wasn't enough, he got a second dose of morphine a little while later. Meanwhile, his oxygen sats were not looking great...hovering between 89-94 mostly and he kept worrying all the nurses. He had come out of the OR with bad stridor, so they had already given him a really big dose of IV Decadron (?)...some steriod to help with this. They put the blow by on him and he would do better anf drop when it was taken. We were moved then to another area of the PACU where we would stay the next 4+ hrs. His sats for the next 2 hrs remained around 89-94 and he was put on blow by 2 times for an extended period of time before he finally could stay above 95. Meanwhile, he was thrashing and still very uncomfortable and refusing to eat. They gave him a nice hefty dose of Zofran and he calmed for a bit. Later he would receive 2 additional doses of morphine for pain and he finally was able to drink some pedialyte/apple juice mixture. After about 4.5 hrs he was able to wake up a bit and they let us walk him around. He was super fussy and ready to go. Finally the drs signed off for his discharge. After they bandaged his leg from pulling the IV, I felt a warm liquid dripping on my leg. I looked down to see tons of blood everywhere! Nathan's IV site in his foot had opened up and blood was literally pouring everywhere! They finally got it to stop and he was beside himself at this point. After a last dose of Tylenol, we were outta there...photos of his airways in hand. They sent us home on OTC Tylenol, so I am praying for a smooth night. I am not so sure though after 4 doses of morphine.

His adenoids are gone! He has a 2 in incision on his thigh which has already bled through the bandages even tho we cannot change them until Thurs. They gave him an injection of local for the thigh, so I am hoping that is not hurting him right now. He had a laryngoscopy and bronchoscopy and everything looked pretty good. They sent off some samples of mucous for testing, but he thinks those will be ok. He also said he noticed some floppiness at the larynx area and thinks it is more from the lack of muscle tone (which is worse when sick) and that is what is causing problems. Other than that, picture perfect!

I am exhausted, so I am going to end for now. Thanks for all the prayers said for our little guy today. We sure appreciate it! Take care and God bless!

Tuesday, July 11, 2006 5:54 PM CDT

We are home!!!!

I so did not think this update was going to be coming from here, but we managed to get sprung after over 5 hrs in the PACU.

The day started with Doug shaking me awake saying OMG the alarm didn't go off at around the time that we should have been dropping Nicholas at my parents' house and heading downtown. I about died! Thankfully, we took both kids in jammies, threw clothes on, and grabbed the meds (which I gave Nicholas on the way). Everything else was packed already, thankfully. We called ahead and they told us not to worry and we were only 15 min late to a 2 hr earlier than surgery pre-op appt. I cannot believe we made such good time! The pedi surgeon had a talk with Nathan and made him promise not to cough in front of the ENT ever again...and luckily (since he has no cough) he didn't! We were taken back and said our goodbyes and let him go. Doug, my mother inlaw, and I went to grab some food, as we had missed breakfast in the rush and then we picked out a small toy for Nathan from the gift shop. After a short 1 hr 10 min, we were able to go back and see him. That is when the fun (not really) started. Nathan was very uncomfortable. He ended up with a dose of Tylenol and Morphine right off the bat. When it was evident that wasn't enough, he got a second dose of morphine a little while later. Meanwhile, his oxygen sats were not looking great...hovering between 89-94 mostly and he kept worrying all the nurses. He had come out of the OR with bad stridor, so they had already given him a really big dose of IV Decadron (?)...some steriod to help with this. They put the blow by on him and he would do better anf drop when it was taken. We were moved then to another area of the PACU where we would stay the next 4+ hrs. His sats for the next 2 hrs remained around 89-94 and he was put on blow by 2 times for an extended period of time before he finally could stay above 95. Meanwhile, he was thrashing and still very uncomfortable and refusing to eat. They gave him a nice hefty dose of Zofran and he calmed for a bit. Later he would receive 2 additional doses of morphine for pain and he finally was able to drink some pedialyte/apple juice mixture. After about 4.5 hrs he was able to wake up a bit and they let us walk him around. He was super fussy and ready to go. Finally the drs signed off for his discharge. After they bandaged his leg from pulling the IV, I felt a warm liquid dripping on my leg. I looked down to see tons of blood everywhere! Nathan's IV site in his foot had opened up and blood was literally pouring everywhere! They finally got it to stop and he was beside himself at this point. After a last dose of Tylenol, we were outta there...photos of his airways in hand. They sent us home on OTC Tylenol, so I am praying for a smooth night. I am not so sure though after 4 doses of morphine.

His adenoids are gone! He has a 2 in incision on his thigh which has already bled through the bandages even tho we cannot change them until Thurs. They gave him an injection of local for the thigh, so I am hoping that is not hurting him right now. He had a laryngoscopy and bronchoscopy and everything looked pretty good. They sent off some samples of mucous for testing, but he thinks those will be ok. He also said he noticed some floppiness at the larynx area and thinks it is more from the lack of muscle tone (which is worse when sick) and that is what is causing problems. Other than that, picture perfect!

I am exhausted, so I am going to end for now. Thanks for all the prayers said for our little guy today. We sure appreciate it! Take care and God bless!


Melody

Saturday, July 8, 2006 10:52 PM CDT

Well, here we are facing the surgery again. Nathan goes in on Tuesday for his rescheduled procedures. They will be doing a Bronchoscopy, Laryngoscopy, Adenoidectomy, and muscle biopsy to test for Mitochondrial disorder. Nathan has been healthy so far (knock wood) and should be just fine to undergo the procedure Tues morning. I am just trying to keep him from any possible run-ins with germs...so no gym child care, no church nursery, no groups of people, etc. I hope it works for us. I am nervous, as expected, but I am also SOOO ready for this all to be over with. Just 2.5 more days...

We had a pleasantly uneventful week this week. Doug has been working 50 hr weeks again, so the holiday was a welcome break for him. The boys have been well, we had NO dr appts and no therapy, (they are on vacation for the 4th holiday this week) and no pressing issues to deal with. It was actually really nice to hang here at home and relax and enjoy the boys.

The holiday was a lot of fun for us. We started the day with Doug mowing the lawn...a long overdue chore here. Then, after cleaning us all up, we went and spent the late morning and afternoon with my parents. We had a hot dog lunch with all the trimmings and it was delicious! Then, the boys played hard with their Nana and Grampy before laying down for naptime.

Nathan looking so proud after pulling up on the coffee table...



Nicholas acting irritated at me for interrupting his Baby Einstein show...



Mr Patriotic in Grampy's little red rocker...



After they woke, we left and went to get the boys' godmother. She was in back in town for a few days before heading out again and they really enjoyed spending the time with her. We grabbed dinner out and then bought some fireworks and set them off. Pretty cool! The boys really had a ball watching them going off, even if the night was dampened by some rain. At least it was not a downpour!

Nicholas with a jumbo sparkler...



Nicholas helping daddy with a firework...



Nathan applauding a particularly pretty display...



The next day, we had friends come in to town to go shopping with us at the outlet mall and we had such a good time! We ate, the kids played, we shopped, and then we had dinner at Rain Forest Cafe where they had kids' night. What a blast! They had Superman, a juggling Uncle Sam, a clown that made balloon animals, and a giant costumed frog who is their mascot.

Nicholas riding the carousel...



Nathan and Superman...



The kids had so much fun! We even splurged and got a volcano...a dessert with 4 cake sized brownie slices, 2 giant scoops of ice cream, 2 scoops of whipped cream, and drizzled with hot fudge and caramel. Then, it is topped with a sparkler as they bring it out to you. Talk about sinful...and YUMMY! And, after 8 people shared it, there was even some left over! We left there very full and satisfied!

We took the boys swimming at the gym Thurs night and they had a lot of fun. Nathan actually enjoyed the water this time and did not freak out like he has in the past. I think since we used the outdoor pool this time, the water was a lot warmer. That cold water can be a shock to the system sometimes!

Today, we just went to horse riding therapy and ran some errands. A busy day, but fun nonetheless.

Thanks for stopping by to see us...I promise I will update after the surgery. I am hoping for a smooth procedure with no admit necessary, but we will be going with a bag packed just in case. We would sure appreciate any prayers you could spare for us around 9:45 Tues morning. Take care and God bless!


Melody

Tuesday, June 27, 2006 11:47 AM CDT

Well, to say that this morning went nothing like we expected would be a HUGE understatement. We got up, packed up, dropped Nicholas off, and headed into the hospital. We spent 2 hrs going through all the pre-op stuff and were waiting in the pre-op holding area. The surgeon had come in and marked Nathan for his biopsy and the anesthesiologist and ENT had come in to go over last min stuff with us, concent forms, etc. They were getting ready to take him back and all of a sudden, Nathan coughed. They both immediately looked concerned. They both asked aboutt he cough, how long he had been sick, what was going on, how long on meds, etc. Then both listened to him and even tho the pre-op nurse said he sounded ok, they both told us that there was no way they could do the surgery with him sounding the way he did. Breathing was not great and he had a lot of congestion and they were both very concerned that this would greatly increase the risk of post-op swelling and infection since not only would they be scoping him, but also intubating him for the adenoidectomy and muscle biopsy. So, they sent us home. Right now we are rescheduled for the 11th and the ENT has Nathan an extended rx of Omnicef to ensure he is healthier for this next surgery time. He does not want to take any chances with him being sick next time.

I am so bummed even though I know this was the best thing for Nathan today. I guess after scheduling everything, coordinating everyone, packing up, and getting yourself emotionally all psyched up to hand over your baby to a surgeon, the emotional letdown I felt was huge. Now, we have to go through this all again and have this looming in our futures for another 2 wks. Argh! I am just glad that something alerted them to the possible complications BEFORE he went back. That could have saved us froma longer hosp stay then we were expecting, so for that I am grateful.

So, that is our little update, yucky as it is. I appreciate all your kind words and thoughts for us today. You all are the best! Take care and God bless!


Melody

Friday, June 23, 2006 11:06 PM CDT - HAPPY BIRTHDAY JON!!!!!!

as barely above protective levels for tetanus. Right now the game plan is to have him revaccinated with the prevnar (not sure why this one) and have post pneumo titers drawn at TCH in 4 wks. He was adament that we should NOT wean him from the flovent as the pulmo wanted and put him on flovent 2 puffs in the am and a dose of pulmicort in the pm for now and we will go back to the 2 puffs x2 of flovent in a few weeks. Follow up with our local A&A office in 6 wks for a recheck. He then had a sinus CT scan and they did it unsedated...OMG NOT pretty!!!! He absolutely freaked out when the tech made him lay on his tummy and put his head in this metal basket thing that was bigger than his head! Every time the machine made a noise or something moved, he freaked and jerked his head up. I cannot tell you how many tiems they restarted the scan! Finally, after sucking Nathan's binky, mama singing to him, and the promise of Chuck E Cheese hangin in the balance, he made it through the 3 min of scan they needed. his sinuses looked crystal clear! Yeah!

Nathan was dx with a sinus infection. He started sneezing green goo this morning. His breathing is still not good. We are to stay on the xopenex x4 and pulmicort x2 for a while longer then wean off the xopenex to as needed and stay on the pulmicort indefinitely. He is also on Omnicef x10 and Prednisone (ugh) x3. We will follow up with the local office in 6 wks for a recheck. He is glad Nathan's adenoids are coming out as we saw the head xray and man...that kid has about 1/4 in in his throat on the xray where some type of soft tissue is not in his airway...no wonder he cannot breathe! His levels were almost exactly the same as Nicholas...IgA, IgM, and IgG serum and subclasses 1,2 and 4 all low and subclass 3 and IgE ok. Pneumo titers were so-so...he made ok antibodies to about 1/2 and has no immunity to tetanus or diphtheria. His sweat chloride only came back for the right arm and that was perfect. He also had no allergies in the RAST test.

After comparing the 2 boys' levels, he thinks this is something familial he said. He also must have called the boys "medically complex" and "complicated medical history" for them both about 5 times and kept on saying "I would not mind at all taking over their care BUT I think you would be better served by going back to TCH because of their other med issues and have them followed there. After hearing that so many times, I am not sure if he just does not want to mess with them or if he might be a bit intimidated by their issues...I am not sure what the problem is, but I am not sure I still feeel comfortable taking them there if he keeps telling us that. I am really disappointed and at a loss. :( I asked him what he thought the boys might have and he basically danced around the question without being straight with me and just said that right now "they are in a place of limbo...not nearly doing well enough to say there is nothng wrong and things are ok, but not quite bad enough to think they need to be on IVIG just yet". Ok...tell me something I DON'T already know! So, he recommended going to TCH again to get their opinion. I aske dhim what he knew about Mitochondrial disorder and he said that he knew of it but was not familiar with it. I explained to him tat the neuro was leaning towards this as a possible explanation for the boys' issues and that it was my understanding that immune deficiency is associated with mito and could this be a possible explanation for their immune deficiencies? He basically said again that this was "Yet another reason to take them to TCH for further evaluation".

So, basically I sit here just so disappointed that I left with no new answers and STILL no answers to the questions I have had for so long. And I sit here and wonder who is going to help my kids??? As of right now, both boys have an appt with the A&I clinic at TCH in Sept. I just pray that this will be the dr that can give us some answers. In the mean time, I guess we will sit and wait some more. :(

Guess that is about all for our little update. Nicholas has an appt with the surgeon Mon morning to be remeasured for his feeding tube to make sure it is still the right size and Nathan is set for surgery on Tues morning at 10 am. I am hoping we will escape an admission, but I guess only time will tell. I will update the site after the surgery so everyone knows how it went. Thanks for checking in on us everyone. We sure do appreciate it. Take care and God bless!


Melody

Monday, June 19, 2006 3:39 PM CDT

Well, what a weekend!

We made it to the ENT appt for Nathan on Thurs last week and it was definitely not the appt we were expecting. We were all ready to have the flexible scope done while we were there, but instead the ENT has decided he would rather have Nathan sedated and do a bronchoscopy so he has plenty of time to take a really good look around at his airways and then just go ahead and remove his adenoids. He was really concerned about the amount of congestion Nathan is still having even after getting his ear tubes, and since he is still a noisy breather and snorer and now has the breathing issues as well, he thought they better just come out. I am a little irritated at this since I asked him at the tube surgery if he thought Nathan's adenoids needed to be looked at and he said no that they don't take adenoids out of kids this young. Ugh! I wish he has just listened to me! Maybe we could have avoided another surgery. We are scheduled tentatively for the morning of the 27th and he told us to pack a bag for one of us since, with all of Nathan's past history with intubation, he is afraid he will have problems enough afterwards to need to admit him. That bothers me. Is this a common thing to happen after a brinchoscopy? To have issues enough to admit? I feel so bad for him. This will be his 3rd surgery...1 by age 6 mos, 2 by age 12 mos, and 3 by age 15 mos. Ugh. So he is tentatively scheduled for Tues the 27th in the morning, but that could change if we hear back from the neuro. We decided to call and let her know we were going to be in the OR then and see if she thought that the biopsy would be a good idea to do or not seeing as how he would already be under general anyways. It would save us from another outpatient procedure down the road if need be. Once we hear back from her we will have a firm date.

At least we had some fun after the appt! We went to the Galleria to do some shopping since none of my clothes fit anymore. The, we went to the members celebration at the zoo and had a blast! The boys were so excited and it was a really fun evening.

Friday night was a rough night for us here. Doug and I were about to go to bed at around 2 when we heard Nicholas screaming on the monitor. We ran in there to find him curled up in a fetal position screaming until he was purple and in a lot of pain. He could hardly even tell us what was wrong he was hurting so much. Finally, we could see he was so bloated you could hardly see his bellybutton. We tried to vent him and got nothing but a ton of yellow bile and hot dog from dinner over 8 hrs earlier. We finally had to call the GI at around 3 am and he was telling us we needed to go to the ER. Finally, after going over everything for some time, we came to a compromise that since Nicholas was actually not screaming at that point, we would try an enema first and see if we could get him to poop. If he produced nothing we had to go the ER within 30 min...so, dh ran out at 3:30 am to get the enema. Thankfully he produced some and felt better enough to go back to sleep. We had to shut off the feeds tho. He has been a little better each night, but not enough to do a feed Sat night and only managed a 50% formula/50% pedialyte feed last night. He had a bright yellow loose stool Sat, so I am hoping that was from Fri night moving through. After about 36 hrs or so, it seemed like the bloating was finally gone. Doug and I finally got to bed at around 4:30. I felt so bad waking up the GI in the middle of the night and apologized profusely, but he was SO nice about it. He told me This is my job...I am the dr. If anything had happened to him and you hadn't called about it, I would have been upset. He is such an awesome dr! We have a call into him today to see where we go from here. This motility issue certainly came up out of nowhere! He has been eating a little here and there, but nothing of substance tho and he is put off by hot dogs now, remembering they were in his tummy when he felt bad and thinking they were what made him feel sick. I hope we can rectify that soon as hot dogs are a food he will willingly eat well and I sure do not want to lose that as one of his menu items.

After that, we headed on up to the mall for Doug's Father's day present. The boys and I got pics taken for a pic of us for his desk at work. The last one only had Nicholas and me in it when I was pg with Nathan, so it was time to replace it for him. After that, we stopped by a birthday party for one of Nicholas' little friends and left there early for the Open House Doug's parents threw at their new house. That sure was one huge soiree! They had well over 50 people through there and cooked enough food for an army! We had fun and stayed there overnight to celebrate Father's day with his family.

On the way home yesterday, it was a huge mess! It was raining and by the time we had gotten into the part of town where we live, the main road to get to our neighborhood was like a lake and it was pouring so bad we could not even see to drive! The street was flooded over the curbs on both sides. What normally takes us 10 min or less to get from our house to the freeway took almost 30 min to get into the neighborhood only to realize our neighborhood was so badly flooded, we had to turn around. The good end of the street that never floods was over the curbs, so our house, which is in the middle of the street by the gutter, was going to be really bad. I called my parents and thankfully, they let us come over and hang out for a while. We had our gear from the overnight weekend still packed in the car, so we would have been ok to stay the night if need be. After about 2 hrs, the water had gone down enough for us to come home. Parts of our neighborhood are still flooded, but our street was ok...the water had receded. The debris line was over 12 ft up the driveway, so a good 8 ft or more past the sidewalk! This is about 2/3 of the way up the drive. Luckily we have a very steep driveway. The news said that we got 1.5 in in 30 min and it rained like that for almost 2 hrs! This is the nearest it has come to the house...more rain even than the hurricane last fall. Makes me so glad we have flood insurance. We had more rain today, but nothing like last night. Other parts of town got a ton this morning! I think Doug said that the rain gauge from last night showed more than 4 in in there, so it was a lot of rain, especially when it has been so dry lately and the ground is too hard and dry to soak up any water. It all just runs off right into the street and the gutters cannot handle that kind of volume in such a short time. We got home around 10 and things were ok though, thank goodness!

Anyways, that is all the excitement for us from the past few days. We have the Immuno appt coming up soon and are hoping to finally get some answers. Nicholas also has a CT scan that day as well, so we are going to have a full day scheduled then. I just want to have a plan and feel like we are getting somewhere with all this immune stuff. I will update after we know more. Thanks to everyone who is out there checking up and supporting us. We really do appreciate each and every one of you! Take care and God bless!


Melody

Tuesday, June 13, 2006 10:44 PM CDT

Nathan had his Echocardiogram last Friday. It did not go exactly as planned, however. Leave it to him to do things his own way! After a good recheck with the A/A dr for his breathing, we arrived at TCH and Nathan had been fasting overnight since this was a sedated test. When they took us back to the sedation area, they hooked him up to a pulse ox and to our great disappointment, Nathan's sats were hovering between 92-97% (the closer to 100% the better) and half that time his sats were under 95. They talked to the cardio on call in the echo area and the dr was adamently refusing to sedate him with sats that questionable...way too risky. They had told us to make sure he arrived tired, and so we did. I gave him a bottle and was able to get him to sleep. All was well...or so we thought. Nathan woke up as soon as I laid him down and as soon as he saw where he was, there was no going back to sleep for him. I just about jumped for joy when the nurse asked if he would like to watch Baby Einstein. That is the best distraction known to man for both my boys. Nathan lay there very still and quiet for the entire thing, minus the one time she had to reposition him to get a better look at his neck. He told us off rather loudly for that for a min or 2 and then was fine. The tech was so impressed that an almost 15 mo old would be so still and quiet.

We got the results today and, with the exception of some "trivial regurgitation" in 2 main vessels, it was a normal echo. Everything looks great and is in good working order...I guess a little regurgitation is within normal limits. YEAH! One more weight lifted off!

We all had a great weekend. Nicholas has been begging to go to the beach and so we decided to take the boys to see it. Sat we all road tripped to Galveston to ride the Colonel Paddlewheel boat at Moody Gardens and then off to Fish Tales for a fabulous seafood dinner and then finally across the street to the beach. Nicholas was SO thrilled and Nathan really seemed to love it too! We practically had to drag Nicholas out before it got dark and he begged to come back soon. I think we may take a 3 day weekend to go and visit there sometime later this summer. Here are some pics...











Sunday we had a fun birthday party to go to and by bedtime, Nathan was running a fever again. By Mon morning, he woke with 104.1 and we were off to the ped once again after a rushed call into the OT to cancel therapy for that day. The ped examined him and could see NOTHING upon physical exam that would explain the fever. He is getting as frustrated as we are about this and I broke down into tears out of pure frustration at our inability to help him feel better and stop these yucky fevers from reoccurring. It was awkward, but I am human and getting to the end of my limits some days about all this med stuff that keeps coming at us. He ordered stat bloodwork (which was a total nightmare...2 sticks and lots of digging and screaming) and the results of that came back looking viral. No big surprise there, but he was still running over 103 when he went to bed not long ago. He is tired, grumpy, and everything is an insult right now. I feel so bad for him and completely helpless as there is absolutely nothing I can do. This is his 6th or 7th fever over 104 where nobody knows what is really going on. He still has a bad cough, as does Nicholas, and both of them have been sleeping a lot the past few days, signalling to me that they are both fighting something. We had to go buy a second humidifier since they both need one right now. What a mess. We had to cancel with the ENT Mon and reschedule...either this Thurs if he is not running fever, or next Thurs if he is. He is getting a flexible scope done to look at his adenoids and his airway to make sure he does not have a "floppy" airway. This can get worse when he is sick, so it is a concern right now since the breathing always is worse when he is ill and seems to be the first problem he has when he comes down with anything respiratory. If this is the case, I am not sure what the prognisis may be. As of right now, after an unsuccessful try at weaning from the xopenex treatments, he is still on daily pulmicort and xopenex treatments until further notice. Thankfully, he is tolerating the treatments very well, so that helps at least.

Guess that is about it for now. I am frustrated and upset about this constant illness and I am just hoping someone will be able to tell us really soon exactly what is wrong and what we can do about it. I am just ready to do more than sit on my thumbs and "wait and see". That is getting to be very heartwrenching and frustrating for me.

Before I end for tonight, I would like to ask for a prayer request if I might. My sister just found out today she is expecting a 3rd surgery for a reoccurring cyst in her jawbone and this one will require hospitalization. She is understandably very upset about this. I would really appreciate any prayers for her that you can spare right now.

Thank you to everyone for your support...it really means a lot. I hope everyone reading this is doing well. Take care and God bless!


Melody

Tuesday, June 6, 2006 11:41 PM CDT

Sorry for the lack of updates...boy, why is it that having 2 kids seems like having 10 some days? We have been busy, busy, busy...

Well, after a long night Sunday with fevers up to 103.8, breathing treatments, and a terrible cough with stridor, I had to take Nathan into the peds yesterday. He has something viral that has caused his airways to swell pretty bad and he now has croup. The ped put him on prednisone to help the inflammation and hopefully he can ride this out without having to give him "the works" (blood draw, urine cath, and chest xray) so soon after his cathing issues last week. He came in and said "Please tell me he has some symptoms other than just fever" as he was worried all that cathing last week may have given him a bladder inf. Thankfully, Nathan coughed right then, so he knew it was likely something else. He needs to be fever free by Fri so we do not have to reschedule his echocardiogram that took literally weeks to schedule. Poor baby is in misery and has done nothng but sleep all Sun. evening, Sun. night, and most of yesterday. He is not eating well either, which for my little food lover, is really unusual, so I know he was feeling pretty bad. Ugh! Yesterday afternoon went downhill into the evening and we were debating if we should take him into the ER. The ped we replaced was the one on call and he was NO help at all and pretty condescending to me on the phone. Grrr... Somehow we made it through the night. Well, this morning, Nathan started in with the coughing every 5-10 min and that progressed all morning. When he ate cereal, it progressed to the point of him coughing until he gagged about 5 or so times in a row. I called the peds office and the nurse said not to worry, he just needed decongestant and not to bring him in. I tried to explain it was his breathing, but she was convinced it was just post-nasal drip. Well, I called the immuno's office per their request to update on his condition. They wanted to see him, esp after the nurse heard him coughing while I was on the phone. Luckily they have a local office near to us, so we went there right after lunch. Turns out his resp were too fast and he was retracting, even though we could not tell. Since his belly is so big due to underdeveloped trunk muscles, the fat made it hard to see the retractions, but you could see skin going in between ribs higher up. There is no telling how many times we have looked for retraction at the bottom of his ribs and probably missed it...I was so upset! I am glad he knew what it was and could show us...at least we know what to look for the next time this happens. Anyways, they gave him a neb treatment of xopenex (?) while we were there and he decided that Nathan needed to go on neb treatments after the retracting and fast breathing went mostly away after the treatment. We now are the proud new owners of a neb...ugh. And Nathan HATES it! He is on xopenex x4 and pulmicort x2 and we will go back to see the dr on Fri to see how his breathing is then. The good thing about this is that he thinks this is just what happens to Nathan when he gets resp illnesses. He thinks this should not affect him any while he is well, so I was relieved to hear that. Unfortunately, this will probably be a problem for him anytime he gets a resp bug due to his small airway size and ease of getting airways inflamed. Ugh. We opted to buy the neb seeing as how if this is going to be an ongoing thing when ill, we would probably have paid for it already with a rental after a couple of illnesses. Nathan has been fever free since last night so I am guessing he will be able to make his Fri echo appt after all, thank goodness! He has only coughed maybe a handful of times since that first neb treatment and it seems to get a bit worse right before he is due for another. Thank goodness for Baby Einstein...that show was the best thing ever invented for a distraction for my kids. He actually sits there while getting his treatment, watches the show, and barely fusses at all. What a relief...after the screaming in the drs office, I was beginning to wonder if it would ever be anything but traumatic for him. He also has figured out a way to keep his binky in his mouth while he has the mask on, dangle it from his lips, and still breathe the meds with his mouth. He has this all figured out now!

Nicholas has been running slight fever today and I think he has a mild version of what Nathan has. He seems not to have near the airway distress that Nathan does, thank goodness, so for him, we will just keep an eye on him and see how he does. We finally got the GI once he got back into town and he still wants Nicholas on the day boluses. He expects that Nicholas will be uncomfortable for a short while since drip feed kids who do not eat a lot by mouth tend to have really small stomachs and it may take some time for his tummy to adjust. He wants him to be outside in the sun for 30 min a day too to help with the vit D deficiency. He also was not too concerned with the boys wonky lab levels for the creatinine, so I was relieved to hear that.

The neuro called today. She got Nathan's results back from his urine cathing test and blood tests and all came back normal. That is all well and good, but tells us nothing. We still cannot rule out mito just from that. She is going to be talking to the mito geneticist to see what he recommends next. She wants to do the least invasive test possible to try and spare the boys the pain of skin or muscle biopsy, but we will see what the geneticist recommends we do from here. Hopefully we will hear something back from her soon.

Doug started back to work last Tues and is really enjoying it. I think he thinks this is the best job he has had yet, and for that I am grateful. He is so busy...he is working 50 hr wks...no time off and even less time at home, but it is a paycheck and should slow soon, so we will not complain. He does get overtime pay, so that is a bonus. At least they are making all the extra work worth his while and he is really enjoying being busy and productive again.

Now that May is over, it looks like we only have a few upcoming appts now. This Friday we go in for Nathan's echocardiogram and a recheck with the local immuno's office to make sure his breathing is settling down. On the 23rd, Nicholas has a CT scan of his sinuses and both boys meet with the immuno so we can go over their labs and everything and see how everything looks. The neuro today told us that Nathan's final labs are in and all 3 of his Ig levels are low. No big surprise there. I am really interested to know how Nicholas' are. Anyways, when we hear something, we will let you know for sure.

Thanks to everyone who comes here to read up on our sweeties and especially those who leave a message in the guestbook...even when we have not updated in a while. We appreciate the time everyone takes more than you all know. Take care and God bless!


Melody

Friday, May 26, 2006 10:38 PM CDT - Happy Birthday Tyler!

I would have updated sooner (to wish my nephew happy bday on his special day) but decided to wait until today so I could update about the neuro appt as well...and there is a lot to tell... So, even though it is not his special day, we wanted to wish a terrific little boy a happy day anyways!

Well, let's see...

Monday, I went to the reproductive endocrinologist. She was thrilled with the amt of weight I have lost and encouraged me to keep it up. She recommended I start yearly mammograms and asked me to have my gyn write up the orders for it at my next appt (which was Wed). She was happy that my liver levels were staying down, but told me I still needed to go to the liver specialist since this was an underlying condition and could reoccur at any time. So, I still need to go. Blech! Also, on Monday, Doug got the "official" offer from the recruiter at his new job and he went over and signed the paperwork making it all official! YEAH!

Tuesday, Doug had to get up early and go in for a drug test for his new job. We heard back later that same day that he passed. Not a big surprise to us, but great news all the same. Nathan had OT and did really well.

Wednesday, we did the usual Wed things...PT (which Nathan also did well), storytime, lunch with a friend, and then I had my gyn appt. Always a fun way to spend an afternoon...NOT! She wrote up the orders for my mammogram (oh joy) and did all the other routine well woman stuff. After that, we headed over to the Saturn place as we had gotten some really neat offers in the mail and wanted to check them out. We were there until they closed and thought we might have gotten them down to a figure we were willing to pay, though we were not totally in the market for a new vehicle right now. We have been looking for a year at this van, but never before could we afford it. Since Doug is getting paid more and our monthly ins premiums are going to be less than 1/2 of what they were, we now have the extra $$ to spend on a higher car payment. They sent us home with a 24 hr test drive and told us to sleep on it.

Thursday, we hit storytime and took the car back. Decided to buy it since they got the number low enough for us and our 6 yr old car we were trading in was about to have the warrenty end. We LOVE the new van...it is awesome! Stayed at the dealership forever and finally got to come home with it.

Today was Nathan's sweat test, both the boys' blood draws for the immuno testing, and Nathan's neuro appt. We were at TCH for 5 hrs today and left with 2 exhausted and emotional wrecks. Nathan's sweat test went fine. We should hear results back from that Tues. Nicholas' blood draw went well, as usual. He does not even cry anymore. Nathan, however, was a totally different story. He bawled from the moment they wrapped the band around his arm and it went downhill from there. His lady screamed to our lady, who had just finished Nicholas, to hurry and come help her. Finally, they got the stick and it was over and he bawled for the next 20 min straight! After some lunch, he calmed right back down. Then, it was time to head upstairs for the neuro appt. It went well. She is totally in agreement with the GI that it is likely something metabolic or mitochondrial for both boys. There is just too much going on that is similar for it to be coincidence, she said. She was happy we went to the geneticist we did as he is awesome and one of the chiefs of the dept, but he specializes in autism, and we needed to see someone who specializes in metabolic/mito disorders, so she will be calling up the geneticist who is top in the clinic for these and talking their cases over with him to see what the next steps should be. She ordered some basic organic acid and lactate levels and something else to check for anything obviously indicating mito, which is what she is most suspicious of at this time. She also suggested looking into a muscle biopsy and told us this geneticist she will be speaking to does the fresh ones now at TCH, so we will not have to travel if they need this test run. It is a brand new program and not many drs know of this yet, so I am glad we can get things done here if need be. So, for the mean time, we just sit and wait and keep on keeping on and she will be in touch with us when she knows more. After leaving, we had to get Nathan stuck AGAIN for the new tests. That did NOT go well and they had put the urine bag on him before the stick hoping he would scream the pee out, but he wet the diaper and it missed the bag completely. We now have an early appt with the peds office nurse for him to get cathed for the urine Tues morning as we were NOT about to go to the ER at TCH and pay the ER copay and sit around waiting to have them do it today. I am SO not looking forward to Tues...ugh.

Nicholas has been struggling since we were told to add the daytime boluses. We finally stopped them as it was making his reflux flare way too much and our GI is out of the office until the 6th on a 2 wk vacation. They were able to reach him today and he said that was ok and to add on another hr to the overnight to compensate for the calories until we can speak (maybe tomorrow) and we can make some other plans then.

My weekend away was fabulous! Doug survived and so did the kids and I had a restful and relaxing girls bachelorette weekend away. I did some shopping for my favorite guys and we did a lot of girly sleepover type stuff...it was a huge blast. Once home, Doug took all of us out for a dinner to celebrate our 11th anniversary! It was a lot of fun and yummy food! Nicholas has not wanted to let me out of his sight since I returned, so I have had a shadow, but that is ok. It is nice to know I was missed.

My friend is getting married tomorrow and we will be there with bells on (probably not actually with the bells, but it sure sounded good!) Then Sunday, our other good friends will be having a party for their son's birthday, so we will be going to that and spending some time with the inlaws as well. It is going to be a busy weekend!

Tuesday, EVERYTHING goes back to normal as Doug will be starting back to work. We will miss him, but it will be nice to get our routines back!

Guess that is about all for now. Hope everyone has a wonderful Memorial Day weekend! Take care and God bless!


Melody

Thursday, May 18, 2006 11:06 PM CDT

Well, I have to start with the GOOD NEWS!!! Doug got a job offer yesterday...and he accepted! It was with his #1 pick out of the interviews he has had so far. Went in on Tues morning for the interview, was there for over 2 hrs, and heard back from them the next day by lunchtime. Even better is the fact that the ins coverage starts the first day of employment (BYE BYE $1200/mo COBRA!), he gets every other Fri off, and he will be making a lot more money at this job than the last. I guess the best part is that Doug's layoff turned out to be a blessing in disguise. Now we will actually have room to breathe at the end of the paycheck once the bills are paid. Now we can schedule the boys' appts on the Fri he has off so we can make sure he can go to those important appts without him having to always take off of work to do it. I am so relieved and grateful and I thank God every time I pray for the blessings we have received! Doug will be starting hopefully on May 30 as a Design Engineer, Level IV in the company's Rotary Equipment group. He is very excited and looking forward to it. He took this job hunt as an opportunity to expand his expertise and look for something new and different. He will get to do that and is just thrilled about this. Thanks to everyone here who has been praying for us. God is good and He heard everyone's prayers for us! Thank you all!!

Nathan had his eye dr appt today. All looks good with his vision. He is still nearsighted and will most likely need glasses at some point in the future, but not today!! His vision has remained stable the past several mos. No change at all, so we will not need to return to see her for a whole YEAR!! YEAH!!

I had my GI appt this afternoon....this all because our ins had to go and pull a crazy stunt of not allowing reflux patients to have 2 pills of whatever med they take for it per day. I tried, at the suggestion of the office, to go without the evening pill and see how I did...well let me tell you, those were the worst 9 days of my life since being pg with Nathan. I was dying by the 2nd night and by the 9th night I was drinking Maalox and begging for mercy. I could barely talk from the reflux burning my throat and making my voice raspy, so I had to see the GI to get back on the 2 pill/day regimen. He thinks I may have a delay in emptying...like both boys...and wants me to try Reglan to see. I am just hoping that the new ins does not care and they will let me have my 2 pills/day. I do well and am happy on those! In the mean time, we will try the Reglan to see if it helps. Since we already know I react to this med with jitters and can only half the pills, it may not be enough to help me and I will need to go back on the 2 pills/day. For that, the GI was kind enough to load me up with samples until the ins relents and approves it. Fingers crossed this either works or I have enough pills to make it until the ins changes over. He was very happy, however, with the 20 lbs I have lost since my past appt and thinks this will help me overall in the long run. I will let you know what happens...

Tomorrow both boys have their second opinions with the new immuno we are seeing. Then, we are meeting friends for lunch and I will be joining some really good friends on a weekend long bachelorette party. 2 nights away from the kids. My brain knows I need the break, but my heart is having second thoughts. I know I will have a blast and the kids will be fine, but after being with them 24/7, I am not sure what I will do without hearing their sweet little voices and seeing their beautiful little faces. Thank goodness for our stash of rollover minutes!!

On another note...justwhen we were having a good healthy stretch, we got knocked down again. Our dog of 10 yrs, Susie, got deathly ill Monday morning. So sick that she collapsed and could no longer stand or walk and her eyes had a vacant stare. I cancelled my dr appt that morning and we rushed her to the vet, almost sure she would need to be put to sleep. Thankfully, though she was severely dehydrated, running a temp of over 104, and had sky high kidney and liver and white blood cell levels, the vet managed to pull her through. She got 2 days of IV hydration, IV abx and abx injections, vitamin inj, and she is doing better. Still moving very slowly, on oral abx, and eating special dog food for sensitive tummies and kidney problems, but she has that spark back in her eyes and back at home and still here with us. We are hoping for continued improvements from her. We will keep you posted.

Guess that is about all for us right now. Take care everyone and thanks again for all the prayers and well wishes. We could not have made it this far without tham all. God bless everyone!


Melody

Friday, May 12, 2006 10:12 PM CDT - HAPPY MOTHER'S DAY!!!!!

I am beat. I counted up the number of dr appts we have this month for the family a couple of days ago and it totals 19. 19!!! I am going to rethink this so this never happens again!! Instead of doing a daily account, maybe today I will give you a recount of the week broken down by specialty area.

Ped - Nathan saw the ped Mon and the ped did think he heard a murmur and did think the liver was either enlarged or pushed down by enlargement of another organ. Sooooo...he has scheduled Nathan for an EKG, which I will add to the calendar as soon as we hear a firm date. His liver enzymes came back ok, but a couple of other parts of the metabolic screen came back wonky though (Creatinine and BUN/Creatinine ratio?). Not sure what this means, but we will hopefully find out soon.

GI - As you read above, we got Nathan's results back. Nicholas' came in yesterday and we got a call about it late yesterday afternoon. I knew this was not great since they mail you any good results and call for any off ones. He is deficient in vitamin D and this causes problems with bone growth. Not sure what this means but it may explain his slow growth or short stature (3.5 yrs old and 36 in tall). We will not get to ask the GI until Tues when he is back in the office. In the mean time, he started taking a multi-vitamin to hopefully combat this deficiency. He is not tolerating the added daytime bolus feeds right now. I think we may be overfeeding him by doing this after meals (even tho we are trying to stretch his tummy) and it seems to be causing his reflux to flare up big time. This will be another thing to discuss with the GI on Tues. I cannot speculate on the remainder of his labs since we will be picking up the fax from the peds office on Mon.

Immuno - Nathan's pneumococcal titers/antibody levels came back that he made decent levels to all 7 of the Prevnar. I hope his will stick around. We went to the ID dr today for Doug's colonization treatment protocol. He is now on some heavy duty meds and the rest of us are on some lesser ones, too. We will be wiping surfaces a lot, using towels once, washing sheets very often, etc for the next 2 mos. I hope this will get rid of it! Nathan had an abcess Saturday and we had to call the ID about it and he called in some Bactrim for him. Thankfully it responded very well and very quickly and looked much better by the next day, so we avoided another stay at TCH. While there Nathan got checked and can discontinue the abx. We also chatted at length about Nicholas and his immune status. We told the ID we were in the market for a new immuno or someone to manage his care and he was finally able to speak freely about his opinions without feeling like he was overstepping bounds. He feels Nicholas is doing well for the time being, even though his numbers do not reflect any change at this time. He feels that IVIG is not warrented at this time due to his good clinical picture, but that we need to recheck levels every 3 mos until he is 4 and then reassess then. Although the literature states THI can be outgrown up until the age of 6, most immunos agree it is concerning if the patient hits 4 and there is no visible change to the levels at all. At that point, we would need to revisit possible treatment therapies. He also thinks enrolling Nicholas in preschool for the fall is a great idea. This will be a good test to see how he does outside our protection...not to mention the added bonus of peer pressure during mealtimes and the social aspect of it too. We will reassess before he is 4 if he has illness problems after school starts. I cannot even begin to tell you how relieved I am after having this talk. I feel like I can exhale and breathe again and the stress this has lifted from me feels just immense! I am looking forward to the appt on the 19th with the new immuno to see how he concurs with this.

On the job front, Doug had his interview. He felt like it went well and they said he would hear back in 1-2 wks. He went to a crawfish boil today to talk with potential employers and hand out more resumes and he has 2 interviews set up for next Tues and another possible opportunity for temp work he discussed today. That one does not look promising as the benefits are not great (and we NEED good ones) and it is contract work until the project is done. He might miss a good opportunity for permanent work while bound into a temp contract. That will be a good consideration if and when we get to a point where he just needs something until someting better comes along. I am hoping he gets an offer with a good salary and benefits soon!

Guess that is about all for us this week. Next week is another busy week with appts...I have my reproductive endocrinologist appt and GI appt, Nathan has his eye dr appt, and both boys have their appts with the new immuno. Whew! I am tired already and it is not even Mon yet!

Hope this finds you all well! Thanks for stopping in to check in on both of my beautiful babies! Your encouragement, kindness, and support means more than any of you will know. Take care and God bless each and every one of you! Happy Mother's Day!!!

Oh!!!! I almost forgot!!! I updated the pics in the photo album...make sure you check it out!!!


Melody

Saturday, May 6, 2006 10:44 AM CDT

To say this week was jam packed would be a total understatement. We ended up with 6 appts to add into our regularly scheduled therapy and daily activities. That coupled with Doug being home really kind of turned the schedule on it's ear this week. It was quite a mixed bag of news. Here is the rundown...

Monday:
We had Nathan's ENT follow up and hearing test and decided to take advantage of being on that side of town to take him in for an AFO adjustment. Before we could leave, Doug made a lot of initial phone calls to contacts and the phone was ringing off the hook and we barely made it out of the door. The results of Nicholas' antibody/titer response test came back in and showed he has lost detectable levels to 11 of 14 and the 3 that are still ok have dropped significantly from where they were. The immuno gave us the impression that was ok and I am not sure I agree, after researching and asking questions on my immune def board, so we have made an appt with another immuno to make sure that is correct. We also found out that only Doug is colonized with the MRSA, so he will begin treatment for that at the next appt. We finally got out of the house and met my sister for lunch before going to the AFO place and getting heel pads put in, the velcro straps adjusted, and the inside pads replaced. There were a couple of other things he was supposed to do as well, but didn't do and we we had to leave in a hurry so as not to be late to the ENT appt, so we did not catch that until later. Oh well. The ENT appt went GREAT!! Nathan passed his hearing test and the tubes look great! He does not have to come back for 9 mos unless he has problems!

Tuesday:
Both of the boys had Pulmo appts in the morning. Nathan's went well. His breathing sounded ok and the pulmo said, since summer is here, we will try to hold off on any treatment and see how he does. If he needs intervention, we are to bring him back in. He will be seen on an as needed basis. Nicholas is doing very well on his breathing meds and the pulmo is cautiously optomistic he is outgrowing his RAD, so we are going to put him down to 1 puff 2x/day on his Flovent (down from 2 puffs 2x/day) and if he does ok with the reduction, we can try him off it for the summer. If, at any point, he has trouble, we put him back on. I am thrilled about this...one less med and losing a $45/mo copay all at once! That is progress! In the afternoon, the elem school where I taught had a 30th anniversary open house and we went and I got to see a lot of old friends and coworkers, some of whom I have not seen since I stopped working there after having Nicholas. It was FABULOUS!! I had such a good time!

Wednesday:
Doug went to the OTC (Offshore Tech Conference) and handed out a lot of resumes. My sister met us at the library for storytime and we all had lunch with my mom at her school. It was nice to have a relatively normal day this week for a change.

Thursday:
The therapist decided to meet us at the library for baby storytime and Nathan lost it the whole time. Normally he loves storytime. The lady who does storytime asked us to not do therapy there again. I was SO glad as it made me very uncomfortable and I did not know how to tell the therapist nicely. Nathan, for some reason, does NOT like this therapist and Thurs was no exception. We ran some errands and while we were out, Doug got a call for an interview for one of his top choice companies. It is just a few miles from our house, with no highway commute, and he is to call Mon morning to set it up. He is pretty excited and we are praying this interview turns into something promising.

Friday:
We hit the road for San Antonio as both of the boys had GI appts. This appt was the unexpected one with news we were not anticipating at all. Nicholas' was pretty straightforward. We are about 99ure he is refluxing again. We did not talk about what the future might hold, but decided to be preventative and keep him on the Prevacid. If he continues to have trouble while sleeping, he needs his bed raised. His growth has flatlined. For the last 3 appts (since Oct), he has been basically the same height and weight. He is now pretty much FTT (failure to thrive) again and we are now needing to add back in some day feeds to increase his caloric intake. We are obviously no longer trying to tube wean. The addition of the day feeds again saddens me as it feels like such a step backwards, especially after losing the tube weaning. He wants us to try to stretch his stomach by adding in bolus (gravity) feeds after all meals. We are praying this does not stir up problems with his blood sugars again since that is why we had to stop bolus feeds in the first place. Hopefully he has outgrown that problem and will tolerate this with no problems now. We are to check with the glucometer if he appears to have problems. He had to get a blood workup done...Vit D and A, complete matabolic panel, mineral levels including Zinc, and one other test I cannot remember. Nathan is obviously not having eating issues! He eats like a horse! He is still refluxing, so we will keep the meds as is for the time being. During the physical exam, the GI detected a heart murmur. We were shocked, as with the number of dr appts he has had, we were surprised nobody had heard it before now. The GI thinks it is something called a "still" murmur as he heard it while Nathan was laying down. I am not sure anyone has ever listened to his heart while he is laying down, so if that is the case, it makes more sense why it was missed. When he sat him up and listened, it disappeared as his heart sped up, so he thinks it is ok and just an innocent murmur. Strangely, his heart beats about 3x as fast sitting up as when lying down...interesting as well. I sure hope it is nothng to worry about! He wants us to follow up with the ped, just in case, so we have an appt for this Mon afternoon. He also found, while feeling around, that Nathan has an enlarged liver. Not sure why...could be normal for him or could indicate a problem, so he ordered a complete metabolic panel for him as well to look at the liver enzymes and make sure they look ok. We see him back in the office in 2 mos. I just hope the new issues with Nathan are both nothing to be worried about. We have too much else to deal with without having to add in extra things to worry about at this point! Both the boys did very well during the blood draws. Nicholas barely whimpered during the stick and Nathan did MUCH better than last time. Last time it took 3 people to hold him down and 10 min to stick him as he was fighting and thrashing so much, she could not stick a moving target. This time I tried sitting with him in my lap and he did not even see it coming. He did not cry until a second after she had stuck him, and by then it was halfway over with! We decided to do something fun that afternoon and went to visit Natural Bridge Caverns. All I can say is WOW!! It was SO beautiful! We went 180 ft underground and it was awesome!! The boys were both in awe as well...until Nathan fell asleep anyways. Nicholas walked a lot of the way and did great! They both got to make a smashed penny as a souvenier to take home. We then hit the outlet mall to pick up something for my sister and the Disney store outlet was having a GREAT sale. We got Nicholas a Toy Story sweatsuit for $3, Buzz baseball type jacket for $10, and hoodie sweatshirt for $2.50. Nathan got a cute Pooh onesie and overalls outfit for about $7. We found a Buzz Lightyear remote control moon buggy for $10, down from $54. Nicholas is going to LOVE this for his birthday as he is currently a HUGE Buzz and Toy Story Fan. I was so glad as we really do not have much put away for the fall/winter yet and this was right in our price range! We finished off the day by having Mexican food for dinner to celebrate Cinco De Mayo...since we were in San Antonio! It was yummy!

As far as the weekend goes, I have a bridal shower this afternoon and tomorrow after church, we have a birthday party for one of Nicholas' litle friends from the library, so we should be busy.

Next week, we have several appts, including Nathan's ped eval for his heart, Doug's ID dr follow up for the colonization, and several others. This month is probably the busiest yet for appts for us. I cannot wait until June when we can sit and breathe again!

Thanks to everyone who checks in on us and whoever actually made it all the way to the end of this novel...and especially those who sign the guestbook to give us kind words and encouragement. We truely appreciate all the support. Hope you are all well. Take care and God bless!


Melody

Friday, April 28, 2006 6:06 PM CDT

Update - And I only thought yeaterday was a bad day. Doug was let go from his job today and the check they gave him is only going to be enough to cover us for about 2 mos for bills and the COBRA we will have to get to try to keep the kids covered until he can get a new job. Please, if you have any prayers to spare, we sure could use them right about now. To say that we are shocked and devestated is an understatement.

Take care and God bless.


Melody




Thursday, April 27, 2006 11:10PM CDT Happy Anniversary Mom and Dad P!!!!!

Well, what a day today has been. I was planning on updating today anyways, then got some less than pleasant news and was not going to as I was too bummed, and then changed my mind at the last minute. Anyways, here it is...

The ID's office called today with some of the lab results from Mon back. Both the boys' Ig levels came back. I wish I could say I was surprised, but I really wasn't. It was just a confirmation of something I had suspected for a little while now. Not only does Nicholas have low numbers, but so does Nathan. That truely explains why he has battled croup x2, RSV, 105+ fevers x2 with no cause, a long battle with a flulike illness including high fevers for 2.5 wks, chronic ear inf/fluid resulting in tubes, chronic URI's with chronic coughs/congestion, and xrays showing signs of Reactive Airway x3...all in 6 mos and he is only 13 mos old. Seeing it written down like that makes me realize how sick he has been. I guess we had been dealing with it one illness at a time without looking at the "big picture". Their counts are as follows...

Nicholas:
IgG 381
IgA 29
IgM 15

Nathan:
IgG 304
IgA 17
IgM 28

Without the pneumococcal titers (vaccine response to prevnar/pneumovax vaccine) being in, it is hard to say exactly what this means for both boys, but it certainly changes things. I had suspected this with Nathan due to his poor health all winter, but could kind of deny it without the hard facts staring me in the face. And, in light of Nicholas' recent illness and hospitalization, we need to make some tough decisions for the future. It is looking like IVIG might play a bigger part in their futures then either of us want or like as we have been trying SO hard to avoid it thus far with Nicholas. Both boys will need care now and I am not sure who will be the one providing it. We are going to take Nathan into the immuno and see what his theories on this are. I am wondering if having 2 kids in the same family who just "happen" to have delayed immune systems which they will outgrow is as likely as having 2 kiddos with immune deficiency caused by a different dx or underlying condition. I guess we will know more soon.

We are also about 99% sure that Nicholas is now refluxing through his wrap (Nissen Fundoplication he had done at 11 mos). It seems like this was what was causing the chronic coughing when he was laying down and after he first woke, and since restarting the Prevacid, the cough is gone and he is no longer complaining of the "yucky stuff" coming into his mouth anymore. This is good news that the med is working, but we are unsure if this is a temporary fix or if further testing, med trials, or possibly a redo of the wrap may be in his future. We will have a lot to discuss with the GI next week when we go to San Antonio to see him.

Right now, I am feeling very beaten and battered and overwhelmed with this news. The stress of these impending big decisions is really taking its toll on me and I am feeling like I am in way over my head. I have no idea who is right, who to trust, or how to decide what we should do. The kids' health is of utmost importance to us, but without a medical degree, how do I know what to do or what is best? Please say a prayer for us if you can, to give us guidance, direction, and peace with this situation. I am so tired of seeing them deal with all this medical stuff and I just so wish I could wake up and it would all be gone.

On a somewhat brighter note, the genetics testing came back showing Nathan has all 46 XY chromosomes...all there, none missing or no extra, and all in the right places...none with changed positions. While this is ultimately good news, it does not tell us a whole lot...especially since he has not yet been tested for any disorders or syndromes. The next appt should be when we discuss this. We may also be discussing some further testing with the GI when we go on Fri of next week. We will keep you posted.

Thanks for checking in on us. Hope this finds you all well. Take care and God bless!

Thursday, April 27, 2006 11:10PM CDT Happy Anniversary Mom and Dad P!!!!!

Well, what a day today has been. I was planning on updating today anyways, then got some less than pleasant news and was not going to as I was too bummed, and then changed my mind at the last minute. Anyways, here it is...

The ID's office called today with some of the lab results from Mon back. Both the boys' Ig levels came back. I wish I could say I was surprised, but I really wasn't. It was just a confirmation of something I had suspected for a little while now. Not only does Nicholas have low numbers, but so does Nathan. That truely explains why he has battled croup x2, RSV, 105+ fevers x2 with no cause, a long battle with a flulike illness including high fevers for 2.5 wks, chronic ear inf/fluid resulting in tubes, chronic URI's with chronic coughs/congestion, and xrays showing signs of Reactive Airway x3...all in 6 mos and he is only 13 mos old. Seeing it written down like that makes me realize how sick he has been. I guess we had been dealing with it one illness at a time without looking at the "big picture". Their counts are as follows...

Nicholas:
IgG 381
IgA 29
IgM 15

Nathan:
IgG 304
IgA 17
IgM 28

Without the pneumococcal titers (vaccine response to prevnar/pneumovax vaccine) being in, it is hard to say exactly what this means for both boys, but it certainly changes things. I had suspected this with Nathan due to his poor health all winter, but could kind of deny it without the hard facts staring me in the face. And, in light of Nicholas' recent illness and hospitalization, we need to make some tough decisions for the future. It is looking like IVIG might play a bigger part in their futures then either of us want or like as we have been trying SO hard to avoid it thus far with Nicholas. Both boys will need care now and I am not sure who will be the one providing it. We are going to take Nathan into the immuno and see what his theories on this are. I am wondering if having 2 kids in the same family who just "happen" to have delayed immune systems which they will outgrow is as likely as having 2 kiddos with immune deficiency caused by a different dx or underlying condition. I guess we will know more soon.

We are also about 99% sure that Nicholas is now refluxing through his wrap (Nissen Fundoplication he had done at 11 mos). It seems like this was what was causing the chronic coughing when he was laying down and after he first woke, and since restarting the Prevacid, the cough is gone and he is no longer complaining of the "yucky stuff" coming into his mouth anymore. This is good news that the med is working, but we are unsure if this is a temporary fix or if further testing, med trials, or possibly a redo of the wrap may be in his future. We will have a lot to discuss with the GI next week when we go to San Antonio to see him.

Right now, I am feeling very beaten and battered and overwhelmed with this news. The stress of these impending big decisions is really taking its toll on me and I am feeling like I am in way over my head. I have no idea who is right, who to trust, or how to decide what we should do. The kids' health is of utmost importance to us, but without a medical degree, how do I know what to do or what is best? Please say a prayer for us if you can, to give us guidance, direction, and peace with this situation. I am so tired of seeing them deal with all this medical stuff and I just so wish I could wake up and it would all be gone.

On a somewhat brighter note, the genetics testing came back showing Nathan has all 46 XY chromosomes...all there, none missing or no extra, and all in the right places...none with changed positions. While this is ultimately good news, it does not tell us a whole lot...especially since he has not yet been tested for any disorders or syndromes. The next appt should be when we discuss this. We may also be discussing some further testing with the GI when we go on Fri of next week. We will keep you posted.

Thanks for checking in on us. Hope this finds you all well. Take care and God bless!


Melody

Friday, April 27, 2006 11:10PM CDT Happy Anniversary Mom and Dad P!!!!!

Well, what a day today has been. I was planning on updating today anyways, then got some less than pleasant news and was not going to as I was too bummed, and then changed my mind at the last minute. Anyways, here it is...

The ID's office called today with some of the lab results from Mon back. Both the boys' Ig levels came back. I wish I could say I was surprised, but I really wasn't. It was just a confirmation of something I had suspected for a little while now. Not only does Nicholas have low numbers, but so does Nathan. That truely explains why he has battled croup x2, RSV, 105+ fevers x2 with no cause, a long battle with a flulike illness including high fevers for 2.5 wks, chronic ear inf/fluid resulting in tubes, chronic URI's with chronic coughs/congestion, and xrays showing signs of Reactive Airway x3...all in 6 mos and he is only 13 mos old. Seeing it written down like that makes me realize how sick he has been. I guess we had been dealing with it one illness at a time without looking at the "big picture". Their counts are as follows...

Nicholas:
IgG 381
IgA 29
IgM 15

Nathan:
IgG 304
IgA 17
IgM 28

Without the pneumococcal titers (vaccine response to prevnar/pneumovax vaccine) being in, it is hard to say exactly what this means for both boys, but it certainly changes things. I had suspected this with Nathan due to his poor health all winter, but could kind of deny it without the hard facts staring me in the face. And, in light of Nicholas' recent illness and hospitalization, we need to make some tough decisions for the future. It is looking like IVIG might play a bigger part in their futures then either of us want or like as we have been trying SO hard to avoid it thus far with Nicholas. Both boys will need care now and I am not sure who will be the one providing it. We are going to take Nathan into the immuno and see what his theories on this are. I am wondering if having 2 kids in the same family who just "happen" to have delayed immune systems which they will outgrow is as likely as having 2 kiddos with immune deficiency caused by a different dx or underlying condition. I guess we will know more soon.

We are also about 99% sure that Nicholas is now refluxing through his wrap (Nissen Fundoplication he had done at 11 mos). It seems like this was what was causing the chronic coughing when he was laying down and after he first woke, and since restarting the Prevacid, the cough is gone and he is no longer complaining of the "yucky stuff" coming into his mouth anymore. This is good news that the med is working, but we are unsure if this is a temporary fix or if further testing, med trials, or possibly a redo of the wrap may be in his future. We will have a lot to discuss with the GI next week when we go to San Antonio to see him.

Right now, I am feeling very beaten and battered and overwhelmed with this news. The stress of these impending big decisions is really taking its toll on me and I am feeling like I am in way over my head. I have no idea who is right, who to trust, or how to decide what we should do. The kids' health is of utmost importance to us, but without a medical degree, how do I know what to do or what is best? Please say a prayer for us if you can, to give us guidance, direction, and peace with this situation. I am so tired of seeing them deal with all this medical stuff and I just so wish I could wake up and it would all be gone.

On a somewhat brighter note, the genetics testing came back showing Nathan has all 46 XY chromosomes...all there, none missing or no extra, and all in the right places...none with changed positions. While this is ultimately good news, it does not tell us a whole lot...especially since he has not yet been tested for any disorders or syndromes. The next appt should be when we discuss this. We may also be discussing some further testing with the GI when we go on Fri of next week. We will keep you posted.

Thanks for checking in on us. Hope this finds you all well. Take care and God bless!


Melody

Tuesday, April 25, 2006 0:32 AM CDT - Happy Birthday Corey!!!!!

Can you believe Nathan was 13 mos old on Sun??? Seems like he just turned a year and already a month has passed us by since then!

We are all FINALLY (knocking some serious wood here!) well and seemingly healthy. After receiving the first Rocephin shot, Nathan was 50% better the next day and after receiving the shot that day, he was much better the next day. He had normal temps until the evening when he ran a low grade. The next day, he ran no fever at all. As of today, the final lab reports are in and the cultures grew nothing. I am really surprised that the shots seemed to help so much when it was something viral, but who knows. He now has had another round of high fever without a found cause.

Today was our follow up appt with the ID. I liked him even more today than I did in the hospital (and that was already a lot!). He is nice and kind and compassionate and caring. Nicholas took to him right away and they hit it off well. He was pleased at how well Nicholas' tube site is looking now and thinks he is officially "over" this nasty germ. We all went today so we could be tested for colonization. He talked to us first about our history with Staph infection. Turns out a lot of the things we considered "spider bites" were more than likely Staph infections. Looks like Nathan may have even had a small one on his hand right before his birthday....very interesting. This testing consisted of taking a long qtip type swab and swabbing 10 swipes of each nostril with one, 10 swipes of each armpit with another, and 10 swipes of the inside of each side of the groin (where the leg meets the body on the inside of the thigh). Thankfully, I was allowed to go to the bathroom to do this one, but Doug was not so lucky. Everyone was swabbed, it was relatively easy and painless (just tickled really), and we should hopefully have the results by the end of the week. I wil keep everyone posted.

While we were there, we had a long discussion about Nicholas and his immunological history and his current treatment (which is nothing). He said absolutely NO more preventative abx, especially Bactrim, since this is THE oral med of choice for treating Staph and if he uses it daily and his body becomes resistant, we have basically eliminated his best chance for at home treatment for it. So no more preventatives for him, I guess. He thinks Nicholas may benefit from a trial of IVIG, but I think he was not willing to tell us exactly how he felt since we are currently under the care of another dr. I did sense he was not in total agreement with our current dr and treatment as I got a lot of raised eyebrows and that type of response when I would answer him. I am very unsettled right now as I have kind of been questioning a lot of the immuno's decisions and patient protocols ever since the hospitalization and this just kind of leaves me with a bad taste in my mouth. We talked about Nathan and how sick he has been on and off since Oct and he offered to test Nathan's Ig levels and titers (vaccine responses) and he wanted to redo Nicholas' Ig levels since he is not acutely ill anymore and, since they have not been checked in 18+ mos, he is also going to redo Nicholas' titers as well. I have been asking the immuno to recheck those for the last 3 visits and each time there is a reason to not do it. I just want to make sure he is retaining the antibodies from the vaccines. If he isn't, that will be a factor in considering IVIG for him. Also, if Nathan turns out to be low as well, that might also change things. I think it is pretty unlikely that 2 kids in the same family would just happen to have delays in their immuno system for no reason. That would look more like an actual immune issue if both kiddos had it. Guess only time will tell, but I think these results will hold a lot of information that we will need to determine future treatments for Nicholas and maybe for both. All I know is that I forsee some big decisions in our near future. I am just very unsettled with the immuno and I am not sure how I will be able to regain trust in him that we are making the best choices for Nicholas' best interest. Please pray for guidance and peace with this...I am not a dr and I have no idea who to believe or how to know/choose what is right for Nicholas.

Nathan is making such wonderful progress with his development. He is getting up on all 4's more, but not officially "crawling" like they would like just yet, although I believe he is close. He is tolerating his AFO's and knows how to get out of them...what a little Houdini! He has pulled up twice on his own this week and tonight we actually found him standing in his crib when we went in to see why he was crying. What an awesome sight to see! I know his therapists will be super happy!

Guess that is all for right now. Hope this finds all of you well. Take care everyone and God bless you all!


Melody

Tuesday, April 18, 2006 5:45 PM CDT

Boy, yesterday was a long day. Poor Nathan woke up with a 105.5 deg fever at 7 am and so we decided not to even bother to call in for an appt...we just showed up. The ped was so glad we did. Poor Nathan was not doing well. He got "the works" done to him, poor thing. The ped ordered a urine catheter for urinalysis and a urine culture, a blood draw for CBC and blood culture, a chest xray to look for pneumonia, and he also got a rocephin inj, just in case so he could be covered. The catheter was a nightmare...he had no urine, so the nurse pressed down so hard on his belly, he screamed and finally peed enough for the testing. It took over 5 min and a lot of her moving the tubing around. Then, the blood draw where they missed the vein and had to dig. Then, the shot, which added insult to injury. Finally, we had the xray where they put them in that little plastic tube to keep them still. After 2 xrays, they took him out and then had to out him back in since he moved. Poor baby...nothing went right for him. We took him home to wait for the dr to call back. His fever kept spiking up to the 104-105 range and we could only get it down to the 102 range piggybacking tylenol and motrin. He was sooo miserable. He spiked a high fever again at around closing time for the ped and this time, his breathing was coming in short, erratic gasps and he was retracting. He had this glassy eyed stare and was almost unresponsive. I called the peds office back in a panic. They told me his wbc was elevated, but everything else looked ok so far. They had me give a dose of motrin and albuterol for the breathing and told us to take him in if he had any more problems like that, spiked another high fever, or the symptoms did not resolve within a set time frame. Luckily, thank God, he improved within the hour. His temp went back down to the 102 range and stayed there pretty much until midnight when we decided it was ok to go to bed. The strange breathing and glassy eyed stare scared me SO much!

We were thankfully able to avoid the ER last night. His fever did not spike up until 4 am and by then, it was kind of pointless to pack everything and everyone up, drive all the way downtown, and sit in the ER there (forever) when we were going to the peds in 4 hrs, so we opted to wait it out and he did ok. No funny breathing or glassy eyed staring this time, so we felt a little bit better about keeping him at home then.

We went back to the peds for our next rocephin inj this morning and the ped said he looked better today than he did yesterday...not a whole lot, but at least a little, so that is a step in the right direction. He did say that his xray showed signs of reactive airway, which would explain the cough he started up with this morning. This is at least the second, and probably the 3rd xray that has shown this, so I am really glad we made the appt with the pulmo. We see him on May 12. This seems to happen every time he gets a bad infection, so I am wondering if this does not make him have more problems with illness when he does get sick. So, he got his shot after a good once over and that was about that. He said there is still a chance that it could be viral, so if we do not hear back from them today, no news is good news. They will not call with culture results if nothing is growing. So, now we wait, but at least it seems he has turned the corner for now. Fingers crossed there is no need for IV abx.

Take care everyone and God bless!


Melody



Sunday, April 16, 2006 10:59 PM CDT - HAPPY EASTER, everyone!

Hi there everyone! What a long and exhausting week it has been here. Sorry for the lack of updates, but we are still trying to get our lives back together and deal with some new issues that are arising. Things can never seem to be calm around here...ugh.

As you know, Nicholas was finally discharged from TCH on Tues. By Thurs we had the results back from the culture they did on the abcess and it turns out Nicholas had an MRSA infection. This is a resistant form of Staph and is difficult to treat due to the many abx it is resistant to. It is also a potentially dangerous infection as well since it tends to be pretty agressive. Not really the news we were wanting to hear. The abcess, thankfully, showed sensitivity to treatment with all the abx he took in the hospital and also the one he was sent home on. Now, we are just hoping it clears up soon and is gone for good. We go into the ID on the 24th for the colonization testing...that cannot come fast enough for me! In the meantime, I sit and stress over the way this was handled by a certain dr of ours and wonder what this means now according to his immune status. I have no idea if this means we are potentially looking at the possibility of IVIG now or not, but this was definitely not the "run of the mill" infection and this may really change how his immune status is looked at. We will be getting a thorough opinion from the ID and see just where he stands on Nicholas' immune status at that time. Even though I am not thrilled about even considering IVIG, right now all I know is that I don't want this to happen again. I guess at this point I am not opposed to anything.

Nathan was so glad to have Nicholas and me back home. We were able to keep his appt on Wed for him to get his AFO's. I am not so sure he was happy to not have to reschedule, but he has tolerated them well...like them or not. They really help, too. We can already see a difference when he wears them. Late Friday, he started running a fever and we have not been able to get it down since then. Today, it hit a high of 105.1 so we called into the nurse's line thinking "here we go again" and hoping for some good advice regarding deciding whether or not he needed to be seen in the ER. I am not happy with the help we got, however, and she basically thinks he is one of the 14f kids who have a delayed reaction to the chicken pox vaccine and get a fever from it 17-28 days after the injection. I asked her if a fever this high was common with that and she said no, but did not offer us any more than that. She also would not have the dr call us back. Ugh. I guess we will hope he does ok tonight and I will be waiting outside the peds office in the morning with him when they open. Believe me, the ped is going to hear an earful from me about the nurse's line. Sadly, this will not be the first time we were given useless info and no help and last time, he was pretty unhappy. I am just praying we can avoid another hospital stay. It is scary as he has NO symptoms other than this high fever. Makes me wonder if this might be related to the last 5 day bout with 104-105 deg fevers and no cause to be found. My poor baby...he is just hot and miserable.

Guess that is about all for now. I will update with Easter pics soon. Take care and hope everyone had a great Easter with family! Take care and God bless!

Sunday, April 16, 2006 10:59 PM CDT - HAPPY EASTER, everyone!

Hi there everyone! What a long and exhausting week it has been here. Sorry for the lack of updates, but we are still trying to get our lives back together and deal with some new issues that are arising. Things can never seem to be calm around here...ugh.

As you know, Nicholas was finally discharged from TCH on Tues. By Thurs we had the results back from the culture they did on the abcess and it turns out Nicholas had an MRSA infection. This is a resistant form of Staph and is difficult to treat due to the many abx it is resistant to. It is also a potentially dangerous infection as well since it tends to be pretty agressive. Not really the news we were wanting to hear. The abcess, thankfully, showed sensitivity to treatment with all the abx he took in the hospital and also the one he was sent home on. Now, we are just hoping it clears up soon and is gone for good. We go into the ID on the 24th for the colonization testing...that cannot come fast enough for me! In the meantime, I sit and stress over the way this was handled by a certain dr of ours and wonder what this means now according to his immune status. I have no idea if this means we are potentially looking at the possibility of IVIG now or not, but this was definitely not the "run of the mill" infection and this may really change how his immune status is looked at. We will be getting a thorough opinion from the ID and see just where he stands on Nicholas' immune status at that time. Even though I am not thrilled about even considering IVIG, right now all I know is that I don't want this to happen again. I guess at this point I am not opposed to anything.

Nathan was so glad to have Nicholas and me back home. We were able to keep his appt on Wed for him to get his AFO's. I am not so sure he was happy to not have to reschedule, but he has tolerated them well...like them or not. They really help, too. We can already see a difference when he wears them. Late Friday, he started running a fever and we have not been able to get it down since then. Today, it hit a high of 105.1 so we called into the nurse's line thinking "here we go again" and hoping for some good advice regarding deciding whether or not he needed to be seen in the ER. I am not happy with the help we got, however, and she basically thinks he is one of the 14f kids who have a delayed reaction to the chicken pox vaccine and get a fever from it 17-28 days after the injection. I asked her if a fever this high was common with that and she said no, but did not offer us any more than that. She also would not have the dr call us back. Ugh. I guess we will hope he does ok tonight and I will be waiting outside the peds office in the morning with him when they open. Believe me, the ped is going to hear an earful from me about the nurse's line. Sadly, this will not be the first time we were given useless info and no help and last time, he was pretty unhappy. I am just praying we can avoid another hospital stay. It is scary as he has NO symptoms other than this high fever. Makes me wonder if this might be related to the last 5 day bout with 104-105 deg fevers and no cause to be found. My poor baby...he is just hot and miserable.

Guess that is about all for now. I will update with Easter pics soon. Take care and hope everyone had a great Easter with family! Take care and God bless!


Melody

Tuesday, April 11, 2006 3:05 PM CDT

Boy does time sure drag when you are inpatient. Seems like we have been there forever! It sure is good to be home and have the family back together again.



The excitement for today...we thought that Nicholas could only use Tegaderm and Medipore tape due to his tape allergy, so they were all very careful to use only those things. They even put a really small piece of Tegaderm to hold the IV, just in case. Apparently we can now add Tegaderm to the list of tapes Nicholas cannot use. When they removed his IV line ( or "house" as he called it), the Tegederm literally tore all the top layers of skin off and what is left is several open sores where the skin is missing down to the flesh. I think there are about 5 or 6 of them...it must have blistered up underneath where nobody saw it and now they are all open and raw. He screamed enough to wake the dead when they took it off. Ugh. :( Things are finally settling down otherwise, though. The abcess drained so much last night that they thought that sending us home on oral abx would be sufficient. We have a list of things to look for in case they are not enough and we need to go back in, but I think he is going to do fine. This morning, he even laid on his tummy to watch TV and he has not done that for a while, so I can tell it is feeling better.



The preliminary culture results are in and we got them from the nurse before we left. The culture was already growing gram positive bacteria. Not sure what this means exactly since they were not in when I spoke to the ID this morning, but I am sure I will get the info when I call on Thurs for the final reports. After Nicholas is done with the oral abx, we need to make a follow up appt to go in and see the ID again and he wants to test Nicholas and the rest of the family for a Staph colonization. He feels that, because the abcess/cellulitis spread so quickly, Nicholas is more than likely colonized with the Staph bacteria and that is what led to the rapid spread. Chances are, if he is colonized with it, then we all are since it is spread through skin contact and since we bathe and diaper him and he bathes with Nathan, everyone will probably have it, too. There is a treatment protocol that we will all have to follow to decolonize ourselves, but that has to be easier than doing this again. He also said that, because Nicholas has now had the abcess, he is at a much higher risk for recurrence, so we are to take him straight in at the first sign of cellulitis or abcess.



Nicholas, needless to say, was super happy to leave. He walked out all by himself and told EVERYONE on the way out "I going HOME now!!!". He is now napping comfortably in his own bed. I think I am headed that way, too, myself. I am exhausted. Thanks again everyone, for all your help and support through all this. You are all wonderful and I appreciate it more than you all know! Take care and God bless!


Melody



Monday, April 10, 2006 7:46 PM CDT

Well, at least the excitement of today was nothing big...thank goodness! Just a small diaper leak this morning requiring another gown change and then a diaper blowout with yet another gown and a total bed overhaul again. Turns out the nurses had ordered the full capful dose of Miralax instead of the 3/4 cap we usually give him. Oh well...he had hardly pooped anyways, so it was not too bad.

Today we finally achieved drainage! WOOHOO!!! Never thought I would be so glad to see something so gross before! The cellulitis is nearly gone and now that the abcess is finally draining, we should be on the road. I talked to both the GI and the Immuno on the phone today and both were in agreement that, although they trusted the surgeons withy his care, they thought someone with more extensive immune system knowledge and experience should be involved, so we got a referral to an infectious disease dr. He came by late this afternoon, which is when we discovered the abcess had broken open and he did some cultures on it (which the immuno was pretty upset had not already been done). Once we hear back from that, they can determine discharge. So far, oral abx and a PICC line to continue IV abx have been discussed. The surgeons will now be able to drain it and we hope to have that done in the morning, as there is still a lot of yuck under the skin. We are hoping to go home maybe tomorrow. Fingers crossed. In the mean time, we will remain on all 3 IV abx until further notice.

On a good note, Nicholas finally could tolerate being hooked up to his overnight feeds last night and got his full feed. He was in a lot of pain at first, but did ok. I hope tonight will be easier.

Guess that is about all. I am so grateful for all the good thoughts and prayers sent our way. You guys are the best! Thank you just does not cover it. I cannot wait to get home as I have not seen Nathan since Sat and that has been extremely difficult for me as I feel so torn and want to be in both places at once. Thanks again, everyone! Take care and God bless!


Melody




Sunday, April 9, 2006

Well, here we are inpatient at TCH. It just blows my mind how a tiny red mark can go from that to a tennis ball sized infection in under 36 hrs. We pretty much were taken right to the observation unit from the ER when we arrived and were seen byt he surgeon within 20 min from there. I was very happy with how quickly things moved. We finally got up to our room at around 10:45ish last night and it was close to midnight before everyone was done with him. Since the abcess is still so deep and solid, they are opting to go the route of the abx first to see how it responds. They are either hoping to clear it up completely or have the infection come to the surface so that they can drain it without going to the OR...however surgery is still an option as the abcess has still grown since they admitted him. The cellulitis, however, is responding well so far to the abx and it is clearing up already. They have him on what they call the "triple abx" - clindamycin, vancomycin, and gentamycin - every 8 hrs round the clock. He is having to get peak and trough levels of the gentamycin every day, too, with 2 fingersticks and he is NOT a happy camper about that. After seeing the surgeon on call today, it seems like we are now looking at Tues at the very earliest to go home and he did not sound especially convinced that would happen. Ugh. What a weekend. I feel so bad for my poor baby as he was telling me this morning he is "I all done with house" (the IV) and "I ready to go home, mama".

The excitement of yesterday happened when Nicholas' IV tubing came unscrewed and he pretty much bled everywhere. We heard Uh Oh and dh saw a huge dark spot, touched it, and ran out. He came back running with the nurse in hot pursuit and when the lights came on, there was in a huge spot on the bed and covering his pj's, slippers, the IV pole, and the floor. The excitement of this morning happened when he had not peed since our admission despite being on continuous IV drip and he decided to open the floodgates. The poor overnights diaper could not handle that much at once and he flooded the bed. He was soaked as well as his Andy doll. It also did not help that they were measuring his intake/output and it all went in the bed instead. After yet another clothing change and a bed overhaul, he is now resting comfortably and Andy is on his way home with Nicholas' Uma to get a good wash. Needless to say, I am dreading what the excitement for tomorrow will bring. I am hoping for none...

Anyways, just thought I would grab a min while I had the time and dh is here with him to let you all know how things are going and to thank you for all your good thoughts and prayers. Take care everyone and God bless!

Monday, April 10, 2006 7:46 PM CDT

Well, at least the excitement of today was nothing big...thank goodness! Just a small diaper leak this morning requiring another gown change and then a diaper blowout with yet another gown and a total bed overhaul again. Turns out the nurses had ordered the full capful dose of Miralax instead of the 3/4 cap we usually give him. Oh well...he had hardly pooped anyways, so it was not too bad.

Today we finally achieved drainage! WOOHOO!!! Never thought I would be so glad to see something so gross before! The cellulitis is nearly gone and now that the abcess is finally draining, we should be on the road. I talked to both the GI and the Immuno on the phone today and both were in agreement that, although they trusted the surgeons withy his care, they thought someone with more extensive immune system knowledge and experience should be involved, so we got a referral to an infectious disease dr. He came by late this afternoon, which is when we discovered the abcess had broken open and he did some cultures on it (which the immuno was pretty upset had not already been done). Once we hear back from that, they can determine discharge. So far, oral abx and a PICC line to continue IV abx have been discussed. The surgeons will now be able to drain it and we hope to have that done in the morning, as there is still a lot of yuck under the skin. We are hoping to go home maybe tomorrow. Fingers crossed. In the mean time, we will remain on all 3 IV abx until further notice.

On a good note, Nicholas finally could tolerate being hooked up to his overnight feeds last night and got his full feed. He was in a lot of pain at first, but did ok. I hope tonight will be easier.

Guess that is about all. I am so grateful for all the good thoughts and prayers sent our way. You guys are the best! Thank you just does not cover it. I cannot wait to get home as I have not seen Nathan since Sat and that has been extremely difficult for me as I feel so torn and want to be in both places at once. Thanks again, everyone! Take care and God bless!


Melody




Sunday, April 9, 2006

Well, here we are inpatient at TCH. It just blows my mind how a tiny red mark can go from that to a tennis ball sized infection in under 36 hrs. We pretty much were taken right to the observation unit from the ER when we arrived and were seen byt he surgeon within 20 min from there. I was very happy with how quickly things moved. We finally got up to our room at around 10:45ish last night and it was close to midnight before everyone was done with him. Since the abcess is still so deep and solid, they are opting to go the route of the abx first to see how it responds. They are either hoping to clear it up completely or have the infection come to the surface so that they can drain it without going to the OR...however surgery is still an option as the abcess has still grown since they admitted him. The cellulitis, however, is responding well so far to the abx and it is clearing up already. They have him on what they call the "triple abx" - clindamycin, vancomycin, and gentamycin - every 8 hrs round the clock. He is having to get peak and trough levels of the gentamycin every day, too, with 2 fingersticks and he is NOT a happy camper about that. After seeing the surgeon on call today, it seems like we are now looking at Tues at the very earliest to go home and he did not sound especially convinced that would happen. Ugh. What a weekend. I feel so bad for my poor baby as he was telling me this morning he is "I all done with house" (the IV) and "I ready to go home, mama".

The excitement of yesterday happened when Nicholas' IV tubing came unscrewed and he pretty much bled everywhere. We heard Uh Oh and dh saw a huge dark spot, touched it, and ran out. He came back running with the nurse in hot pursuit and when the lights came on, there was in a huge spot on the bed and covering his pj's, slippers, the IV pole, and the floor. The excitement of this morning happened when he had not peed since our admission despite being on continuous IV drip and he decided to open the floodgates. The poor overnights diaper could not handle that much at once and he flooded the bed. He was soaked as well as his Andy doll. It also did not help that they were measuring his intake/output and it all went in the bed instead. After yet another clothing change and a bed overhaul, he is now resting comfortably and Andy is on his way home with Nicholas' Uma to get a good wash. Needless to say, I am dreading what the excitement for tomorrow will bring. I am hoping for none...

Anyways, just thought I would grab a min while I had the time and dh is here with him to let you all know how things are going and to thank you for all your good thoughts and prayers. Take care everyone and God bless!

Sunday, April 9, 2006 1:44 PM CDT

Well, here we are inpatient at TCH. It just blows my mind how a tiny red mark can go from that to a tennis ball sized infection in under 36 hrs. We pretty much were taken right to the observation unit from the ER when we arrived and were seen byt he surgeon within 20 min from there. I was very happy with how quickly things moved. We finally got up to our room at around 10:45ish last night and it was close to midnight before everyone was done with him. Since the abcess is still so deep and solid, they are opting to go the route of the abx first to see how it responds. They are either hoping to clear it up completely or have the infection come to the surface so that they can drain it without going to the OR...however surgery is still an option as the abcess has still grown since they admitted him. The cellulitis, however, is responding well so far to the abx and it is clearing up already. They have him on what they call the "triple abx" - clindamycin, vancomycin, and gentamycin - every 8 hrs round the clock. He is having to get peak and trough levels of the gentamycin every day, too, with 2 fingersticks and he is NOT a happy camper about that. After seeing the surgeon on call today, it seems like we are now looking at Tues at the very earliest to go home and he did not sound especially convinced that would happen. Ugh. What a weekend. I feel so bad for my poor baby as he was telling me this morning he is "I all done with house" (the IV) and "I ready to go home, mama".

The excitement of yesterday happened when Nicholas' IV tubing came unscrewed and he pretty much bled everywhere. We heard Uh Oh and dh saw a huge dark spot, touched it, and ran out. He came back running with the nurse in hot pursuit and when the lights came on, there was in a huge spot on the bed and covering his pj's, slippers, the IV pole, and the floor. The excitement of this morning happened when he had not peed since our admission despite being on continuous IV drip and he decided to open the floodgates. The poor overnights diaper could not handle that much at once and he flooded the bed. He was soaked as well as his Andy doll. It also did not help that they were measuring his intake/output and it all went in the bed instead. After yet another clothing change and a bed overhaul, he is now resting comfortably and Andy is on his way home with Nicholas' Uma to get a good wash. Needless to say, I am dreading what the excitement for tomorrow will bring. I am hoping for none...

Anyways, just thought I would grab a min while I had the time and dh is here with him to let you all know how things are going and to thank you for all your good thoughts and prayers. Take care everyone and God bless!


Melody

Sunday, April 9, 2006 0:42 AM CDT

Just a quick update to let everyone know that Nicholas has been admitted to Texas Children's. He has an abcess on his G-tube stoma and cellulitis that has spread very rapidly in the past 18 hours. He was seen in the ER by the surgeon who admitted him and put him on a triple antibiotic of clindamycin, vancomycin, and gentamycin. He will be on antibiotics for a minimum of 24 hours, so the earliest he could be discharged is Monday. Hopefully, the antibiotics will help the infection heal, but if not he may have to go to the OR and have it surgically removed. Right now it can not be drained because it is too deep and solid and the infection needs to move closer to the surface of the skin to be drained. Please find the hospital information below in case you need to reach us. We will keep you posted as we know more. If you have any prayers to spare, they will be greatly appreciated. Take care and God bless!

Doug

Saturday, April 1, 2006 6:35 PM CST

I am really sorry to have freaked anyone out by not updating the site sooner. My sincerest apologies! This has been one heck of a week. First, we had Nathan's party last Sat and then I got sick afterwards. Then, Nathan had his 12 mo well check Tues and was running fever and feeling generally grumpy for a few days. Follow that up with a marathon genetics appt on Thurs and going to the Relay for Life to watch my mom walk her victory lap last night and going for a much needed girls shopping trip with my sister this morning has kept the week busy busy busy. And, in between all that, we had to split hairs with the ins over Nathan's AFO's and call all over the place to straighten out the mess ourselves. Ugh. I am thankful the weekend is here!

I guess we should start with the party since I have REALLY been bad about updating!! We had the party at the park where we had Nicholas' last party and the weather was just gorgeous!! Everyone had a great time and Nathan enjoyed opening his presents and especially the cake. Here are a few pics...

Nathan opening presents...







Nathan's cake...homemade by Uma herself...



Scarfing the cake and then fussing for more...





Sunday, Monday, and Tuesday, I spent sick with a sinus infection. Not too much fun when you are trying to wrangle a very active 3 yr old and a baby who can now slither on his belly commando crawling...especially when they are conspiring together to tip the dog's water dish and play in the water before mama finds out what they are up to.

Tues was also Nathan's 12 mo well check. Poor baby! He was NOT a happy camper. He got his 2 immunizations, chicken pox vaccine, and a TB test...AND also a blood draw! 2 pokes in each arm and one in the thigh and he was screaming bloody murder the whole time as I had forgotten his binky.

He is growing perfectly along his growth curves...weighed in at 21 lbs 13.5 oz (25 e), was 29.5 in (50 e), and head circ was 18 in (25 e). His ears looked the best the ped had ever seen them (YEAH!!!!) and his tubes are green. His lungs sounded good (YEAH!!), but he still has the nasty green nose, junky cough, and congestion like he has for several mos now and it did not go away with his ear tube surg like we had hoped. The ped decided to run a basic ImmunoCAP to test for basic allergies to see if he might benefit from being placed on an allergy med. So, he got a blood draw, too. We decided since he was going to be ticked off from all the sticks today anyways, we might as well do that one now, too, instead of waiting to do it another time and subjecting him to another occasion of pokes. We should hopefully hear back the results in 48 hrs.

The milestone checklist was kind of hard to take, tho. She asked if he was talking in words yet. I said no. She said not even Mama and Dada? And I said no, but he just got tubes, so we are hoping he will catch up soon. She asked if he had any way to get his needs across and I told her we were working on signs and he has learned one already. That was a least something. The nurse asked if he was walking yet. I said no. She then asked if he was standing and cruising and I said no. She asked then so, he is NOT standing AT ALL? And I said no, not unless you count the time he is in the stander. He is not even crawling yet, but we are working on it. That was where she ended the checklist. Ugh. I wish I could have been able to brag on all the things he CAN do now, like sit up and use a good pincer grasp, feed himself, wave bye bye, slap a high five...something. I guess since he looks so good, sometimes it is hard for them to remember he has some big delays. We are holding off starting milk products until we hear back from the allergy testing to make sure we do not aggrevate any existing allergy that we do not know about. All in all, pretty good!

Then came the genetics appt...the one I had been dreading for so long and, to be honest, it was pretty anticlimactic. I am not quite sure how I feel about it just yet...I think I am just trying to process it all and force myself back into the waiting mode. They were not kidding when they said to expect 3 hrs. We saw 3 drs (one resident, one visiting dr from the Netherlands, and the geneticist) and also a genetics counsellor. The resident and visiting dr took a pretty extensive medical history of both boys from pg on and a family hisory as well. Then, they gave them both a good once over and measured everything under the sun. Poor Nathan though...they were looking for his testicles to make sure they were descended since he has a pretty big fat pad there (even tho with the # of drs he has seen, I am SURE someone would have told us if they weren't) and he was really uncomfortable. I am surprised he did not pee on the resident! Then, they left to go talk to the geneticist. We all got back together and talked. The geneticist said he did not see anything grossly obvious about either boy (which we figured anyways since he would have been referred much sooner if that were the case) and would start by testing Nathan with the basic chromosomal analysis and also a test called a Micro Array (to look at parts of every chromosome). They are also testing his thyroid and some other smaller tests I don't remember since Nicholas was in the process of a HUGE meltdown once the geneticist got in there and I could not hear both of them at once. Hopefully we will hear something back in 4-6 wks. If there is something abnormal, they will see us right away, otherwise we will wait 6-9 mos to see how his development progresses. They also talked about a second tier of testing to be done after this current round of testing, but I am unsure if they meant for this to be done at the next appt in several mos or we will be coming back in the mean time to do that...again, meltdown time during this conversation as well. Then we spoke to the genetics counsellor and she gave us some information and took some pics of Nathan for his file. After that was lots of vials of blood for poor Nathan. I was kind of disappointed that we were not told what specifically they were looking for, but then again, knowing me, maybe that is a good thing so I will not go looking up everything and freaking myself out with what I find. Maybe, too, the dr had no idea where to start looking anyways. Who knows. I really do not feel any better about the whole affair than before the appt and I think that is what bothers me the most. I am not sure what I want to hear back as far as testing goes...of course I want things to come back normal as I sure do not want to hear there is something wrong with my child, but at the same time, normal results do not explain anything as to why Nathan is experiencing the struggles and issues he is having right now and do not help us at all to know what to do to help him, either. What a yucky place to be in.

Throw into all that some drama with the insurance co with approving Nathan's AFO's...what a mess!! I am glad Doug is persistant! After hearing about the ins issue with balking on the approval for the AFO's, Doug started talking to different people in the ins and orthotics place. Turns out not much had been done in the way of getting the approval started on the part of the orthotics place, but the main problem she had was telling the ins it was an orthotic. Our ins will only cover orthotics for diabetics and nothing else. However, AFO's and the like are covered under DME (durable medical equipment), but since she was asking for orthotics and not DME, the ins was going to split hairs about it and not cover it. Now how stupid is that??? FINALLY Doug spoke with someone who had a clue, cleared the issue with the terminology, and the AFO's were approved. He did in 2-3 hrs what the orthotics place and the ins took 6 business days to get nowhere. Anyways, once the orthotics place got the approval, the lady in the ins dept called right over to the warehouse to pull the cast molds and have them start working on them that same day. NOW, it will be about 2 wks until we get them. Gotta love ins... Looks like we should be expecting them around the middle of April now, unless they get done sooner.


Anyways, that was the basics for our week. I will end here as I have now just compiled a small novel and I am sure you have no more time to keep reading on and on about everything. I promise as soon as we hear any test results back, I will let you know what we hear. Thanks to those of you who check in on us daily as you are our rocks and we so appreciate the support we get from you all. Take care and God bless you all!


Melody

Thursday, March 23, 2006 10:11 PM CST - HAPPY BIRTHDAY TO MY SWEET SWEET BABY BOY!!!!!!

I can't believe it. Last year, I was laying in a hospital bed marvelling at my new bundle of joy and so very grateful for the blessing of his safe arrival. Seems just like yesterday....

Now, I am sitting here looking at my 1 year old angel and wondering where the past year has gone!

He had a wonderful day today...all his favorites...library storytime, lunch out with friends, a long warm nap, dinner with yummy food and a sparkler, and presents and cake. What more could a baby ask for?

Here are some pics...

Nicholas at dinner at the Rainforest Cafe...



Nathan mesmerized by the sparkler and all the waiters singing to him and making a big fuss...



Nathan and his presents...and wanting to crawl...



Nicholas helping Nathan open gifts...



Nathan with his birthday loot...



The cake I made for his special day...



Now, before I show you the next batch, I have to issue a warning...if you have a weak stomach, you might want to turn away. What Nathan did to this cake is barbaric! :D :D :D Nathan vs. the cake...

The cake...



Tasting it before the singing was even over...



Hmmm...need another taste to be sure...



Oooooooohh...this is pretty yummy!!



Ahhhhh! I *LOVE* cake!!!




Anyways, thought everyone might get a kick out of seeing the birthday boy in action! He had to get hosed down after his encounter with that cake!

On another note...Nathan had his casting and fitting for the AFO's. Hopefully he will be getting them in a couple of weeks. They are going to be knee high with an ankle that can move like a joint can, so he can still use them when he starts walking. They are going to have primary colored zoo animals on them with royal blue scribbles in between them and royal blue velcro straps. They should be pretty cute. I will be sure to post pics once he gets them in.

He is having a birthday party on Sat and I will be posting pics from that as well sometime this weekend or early next week.

Please remember to keep our Minnesota friends in your prayers. Their son had to be airlifted to the same hospital where her baby daughter had already been admitted. They are having a really rough time right now with both kids in the hospital. If you could please remember them in your prayers, it would really mean a lot to them....and me as well. Thanks to all our awesome visitors. Take care, God bless, and thanks again for everything you do to support us!


Melody

Sunday, March 19, 2006 11:08 AM CST

Well, time for another update and we are all doing ok. It is nice to have weeks like that!

Nathan is recovering well from his surgery and has been his smiley sweet self since the afternoon of his procedure. He is still having a lot of drainage, despite being on abx since last weekend and we finally had to call the ENT yesterday. He said we are at the "far end of normal" as far as the length of time and amt of drainage goes, but thinks we should be ok to wait a few more days to see how it goes. If it does not stop soon, he will have go go back on abx (as they ran out yesterday). So, we have been keeping him from any sort of childcare situations (like church or the gym) to minimize the exposure to germs. Today, the drainage actually looks a little bit better, so fingers crossed that we are on the down side of that problem.

On another good note...Nathan's stander arrived on Fri!! He is using it already and seems to be liking it so far. It is a PERFECT FIT!! He has never gotten to be upright for long and I think he is liking it. He can handle it for 15-30 min at a time so far. We ordered the sandal raisers for it so it will boost him up and he can have a bit more room at the top to reach around and play with a toy on the tray part of it. He goes for his AFO fitting on Wed, so he should be all set in no time to get working towards crawling! Here are some pics of him in the stander...

Back view...check out the chunky legs!!



Side view...



Nicholas is doing ok. He has had a nasty cough, along with his brother, but no other symptoms really other than that. He is starting to show such sweetness at times to his brother. He will get Nathan's binky if it falls or put some cheerios or snacks in front of him in he thinks Nathan is hungry. He will pat him and say "Don't worry....I here" if Nathan is upset. He is even encouraging him to use signs to communicate, just like we would do for him. I hope this is the start of better times between the 2 of them. I know Nicholas is dying for Nathan to walk and talk and play with him already. Too bad it is taking a bit longer than expected. He also got to play mini golf at the park on Fri and had such a good time! We all went and met my sister and her kids and my parents and it was so much fun! The kids played, we used bubble toys, ate a picnic, and really enjoyed the nice weather. Everyone really enjoyed themselves and each other! It was nice.

The rodeo was in Houston the past 2.5 wks. Today is the last day. Doug took a 1/2 day off work on Thurs and we all went to the rodeo and met friends of ours there. We also went again yesterday as a family. We had a blast!!! We got to do all kinds of things...made little lasso ropes, picked out a toy, did sand art we could take home with us, saw all the animals at the AgVenture plaza, ate some seriously yummy food, did some shopping, and watched the rodeo, and heard Hilary Duff (our friend's 10 yr old daughter chose this one!) and Brooks and Dunn, who are our personal faves to see there! Yesterday was the 4th time we have seen them at the rodeo and they just get better every time! Here are some pics of our trips to the rodeo...

Our little cowboy, Nicholas...



Nathan in his western duds...



Daddy and Nicholas with Elsie, the Borden Milk cow...



Petting the pigs...



Making the rope...



Running the barrels at Rodeo U training...



How a hot and sweaty Nathan spent most of the afternoon...



Nathan giggling at the kids' roping antics....




As you can see, we had a wonderful time!! It is so nice when things work out and everyone is healthy enough and up to enjoying some good family time...we sure needed it this week!

Thanks to everyone who checked in on us and said prayers for Nathan's surgery this week...they were gratefully received and appreciated. We are truely blessed to have such special people as regular visitors to us here on the boys' site.

I would like to ask a favor of everyone if I can...we have wonderful friends up in MN who are struggling with their newborn daughter right now. It is a fight to get her to eat and she is not keeping her feeds down well. After going through this with Nicholas, I know just how scary and overwhelming a task that is. She is admitted to the hospital and has just gotten a NG tube and is looking at a g tube like Nicholas has really soon if she is not gainng as she should be. She is also displaying some other concerning health issues and will be getting further testing to determine exactly what they are dealing with. This in addition to another son with severe health issues and caring for their 6 other kids and their various everyday things is making for a very stressful time for them right now. Please, if you have any prayers to spare, would you ask for some strength and peace for them? They are very special to us and we want nothing but the best for them all. They so deserve it. Thanks again to everyone! Take care and God bless!!


Melody

Sunday, March 19, 2006 11:08 AM CST

Well, time for another update and we are all doing ok. It is nice to have weeks like that!

Nathan is recovering well from his surgery and has been his smiley sweet self since the afternoon of his procedure. He is still having a lot of drainage, despite being on abx since last weekend and we finally had to call the ENT yesterday. He said we are at the "far end of normal" as far as the length of time and amt of drainage goes, but thinks we should be ok to wait a few more days to see how it goes. If it does not stop soon, he will have go go back on abx (as they ran out yesterday). So, we have been keeping him from any sort of childcare situations (like church or the gym) to minimize the exposure to germs. Today, the drainage actually looks a little bit better, so fingers crossed that we are on the down side of that problem.

On another good note...Nathan's stander arrived on Fri!! He is using it already and seems to be liking it so far. It is a PERFECT FIT!! He has never gotten to be upright for long and I think he is liking it. He can handle it for 15-30 min at a time so far. We ordered the sandal raisers for it so it will boost him up and he can have a bit more room at the top to reach around and play with a toy on the tray part of it. He goes for his AFO fitting on Wed, so he should be all set in no time to get working towards crawling! Here are some pics of him in the stander...

Side view...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3171910.jpg[/IMG]

Back view...check out the chunky legs!!

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3171911.jpg[/IMG]


Nicholas is doing ok. He has had a nasty cough, along with his brother, but no other symptoms really other than that. He is starting to show such sweetness at times to his brother. He will get Nathan's binky if it falls or put some cheerios or snacks in front of him in he thinks Nathan is hungry. He will pat him and say "Don't worry....I here" if Nathan is upset. He is even encouraging him to use signs to communicate, just like we would do for him. I hope this is the start of better times between the 2 of them. I know Nicholas is dying for Nathan to walk and talk and play with him already. Too bad it is taking a bit longer than expected. He also got to play mini golf at the park on Fri and had such a good time! We all went and met my sister and her kids and my parents and it was so much fun! The kids played, we used bubble toys, ate a picnic, and really enjoyed the nice weather. Everyone really enjoyed themselves and each other! It was nice.

The rodeo was in Houston the past 2.5 wks. Today is the last day. Doug took a 1/2 day off work on Thurs and we all went to the rodeo and met friends of ours there. We also went again yesterday as a family. We had a blast!!! We got to do all kinds of things...made little lasso ropes, picked out a toy, did sand art we could take home with us, saw all the animals at the AgVenture plaza, ate some seriously yummy food, did some shopping, and watched the rodeo, and heard Hilary Duff (our friend's 10 yr old daughter chose this one!) and Brooks and Dunn, who are our personal faves to see there! Yesterday was the 4th time we have seen them at the rodeo and they just get better every time! Here are some pics of our trips to the rodeo...

Our little cowboy, Nicholas...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161893.jpg[/IMG]

Nathan in his western duds...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161891.jpg[/IMG]

Daddy and Nicholas with Elsie, the Borden Milk cow...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161897.jpg[/IMG]

Petting the pigs...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161895.jpg[/IMG]

Making the rope...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161901.jpg[/IMG]

Running the barrels at Rodeo U training...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161899.jpg[/IMG]

How a hot and sweaty Nathan spent most of the afternoon...

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161894.jpg[/IMG]

Nathan giggling at the kids' roping antics....

[IMG]http://img.photobucket.com/albums/v495/dandmpohla/Family%20pics/P3161904.jpg[/IMG]


As you can see, we had a wonderful time!! It is so nice when things work out and everyone is healthy enough and up to enjoying some good family time...we sure needed it this week!

Thanks to everyone who checked in on us and said prayers for Nathan's surgery this week...they were gratefully received and appreciated. We are truely blessed to have such special people as regular visitors to us here on the boys' site.

I would like to ask a favor of everyone if I can...we have wonderful friends up in MN who are struggling with their newborn daughter right now. It is a fight to get her to eat and she is not keeping her feeds down well. After going through this with Nicholas, I know just how scary and overwhelming a task that is. She is admitted to the hospital and has just gotten a NG tube and is looking at a g tube like Nicholas has really soon if she is not gainng as she should be. She is also displaying some other concerning health issues and will be getting further testing to determine exactly what they are dealing with. This in addition to another son with severe health issues and caring for their 6 other kids and their various everyday things is making for a very stressful time for them right now. Please, if you have any prayers to spare, would you ask for some strength and peace for them? They are very special to us and we want nothing but the best for them all. They so deserve it. Thanks again to everyone! Take care and God bless!!


Melody

Tuesday, March 14, 2006 7:05 PM CST

Hello everyone! Nathan had his surgery this morning and it went perfectly! The ENT came out after the procedure and told us he had found a lot of fluid in the ears, but he drained it out and placed the tubes with no problems at all. One of the tubes continued to drain blood and fluid most of the morning, but they told us it was ok...that meant the tube was doing what it was supposed to do. Nathan was yowling his displeasure to everyone who would listen afterwards in recovery and we heard him hollering all the way from the back when we first went in. After nursing, he perked back up and was almost back to his normal smiley self, although he was still pretty spacey and groggy. They did not have to place a tube, so that was good and so far, no airway issues. He was so tired when we were leaving and tried to sleep on my shoulder, but every little sound, like the elevator dinging, made him pop his little head up and look around in bewilderment. I am sure he is not at all sure of what he is hearing now since he can actually hear and he has been getting upset with his now VERY noisy brother all afternoon. I think it is going to be an adjustment for him for a few days until he gets used to hearing things like he is supposed to hear them. We left, picked up Nicholas, came home and ate lunch, and then all of us laid down for a 3 hr nap! Guess we were all pretty drained and tired from the long day!

Nicholas gave my parents a run for their money today. Apparently he is an insomniac when he is not with us. He was up until midnight and up at 6:30...and to think that my poor mom was trying to make it more convenient for everyone and trying to let herself, my dad, and Nicholas SLEEP IN instead of everyone having to be up at 4:30 in the morning for the day. Guess that did not work out like she thought! I hope they sleep well tonight!

On to more good news! WE WON THE STANDER!!!! The auction closed for $575 including shipping for a really nice stander that costs $1900 new AND it was actually shipped late yesterday after the auction closed! We are hoping for it to arrive later this week! WOOHOO!!

More good news? Ok...I got a call from the reproductive endocrinologist's office yesterday about my bloodwork they drew last week. Nothing but GOOD NEWS!!! Everything was much improved since the change in diet and added meds.

Liver enzymes - went from all high to all within normal ranges

Triglycerides - went from 243, very high, to 131, within normal range

Cholesterol levels - the bad chol dropped from 70something to 33 and the good chol went up from a bad 31 to 35, which is still too low but moving in the right direction...since 40 is normal, it is getting close now! The biggie is the ratio of good chol to bad chol...they want this ratio to be under 4.0....mine was 4.5 and dropped to 2.5!!!

I am super happy with the results!!! I have lost almost 12 lbs now too and all my bloodwork is so much better. Thank goodness I went in and got this under control. Now, if I can keep going like this with meds, diet, and exercise, I should be in good shape!

All this is such a weight lifted...the past few weeks have been very stressful to say the least and now, if we can just get through the upcoming AFO fittings and the genetics appt, I think we will be in the home stretch! Those are the last 2 big stressers for me and once we are past those, I think I will be able to relax and breathe for a change.

Anyways, thanks to everyone who sent emails or ecards, signed the guestbook, or thought of us or said prayers for us after the last entry. They REALLY helped. You guys who are always here checking in on us are really awesome! Thanks so much for being our support when we need it! Take care everyone and God bless!


Melody


Saturday, March 11, 2006 8:52 PM CST

Sorry for the lack of updates. We have had a rough couple of weeks, emotionally speaking. Sorry if we worried anyone needlessly by not updating sooner.

Most of you remember the last update when we learned that Nathan would need a stander to improve his weight bearing. This came as a big surprise as we were not expecting him to be in need of any adaptive equipment. I have to say, this made me have to confront many toughts that I have been trying to ignore and push to the back of my mind for some time now. I have been trying to stay positive and not let any of these delays get me down. I keep trying to remind myself to look at Nicholas and how well he did...how far he came...how quickly he caught up. I think I have known for a little while now that Nathan was just not "catching up" like Nicholas did and Nicholas' delays were never as big as Nathan's have been. When I heard "stander", it just flooded my brain with all these things I was not prepared to deal with just then. I have had time to deal with these feelings and thought I was ok. The stander arrived with the PT on Wed and I was ok with it. I was actually thinking how good this would be for him and how this would hopefully speed him along to walking and crawling. Sadly, I ended up being disappointed as no matter how hard the PT and I tried, we just could not make the stander fit him. He is too small for it. It ended up leaving with her at the end of a long, sweaty, and frustrating 1 hr 20 min. It was so upsetting for me because he LOVED being in it and upright for a change! We were also dealt another wrench in the plans as well when the therapist recommended to us, after seeing how Nathan looked standing in the stander, that Nathan needed AFO's (Ankle Foot Orthotics), which is leg/foot bracing. I called the ped's office, who then referred us to the ortho's office, who (through some small miracle) was able to get us in for an appt that same day! We arrived and I totally could sense the confusion on his face since we were just there for Nicholas to be evaluated. This time was much different. Nathan does need them. His foot joints are so hyperflexible that the top of his foot can lay flat against his shinbone! The laxity of the ligamants coupled with the low muscle tone make it near impossible for him to keep his leg bones in proper alignment and his ankles roll everywhere, his knees buckle a lot, and he just cannot coordinate it all together on his own. We called Dynamic Orthotics and have an appt for an AFO fitting on March 22. I am not sure yet how I feel about this. He now has a pair of brand new sandals he will never wear. He will have to wear knee socks all summer in the heat to protect his legs from the tall braces. I am just sad mostly, I guess. Sad because this is not at all what anyone would want for their child. Sad because I want so much more for him than this struggle he is going through right now. And sad because this is just the beginning of a long road for us all that I do not want any of us to have to be on. It makes me very worried and concerned for the upcoming genetics appt. I am dreading it because I am so afraid they are going to find out that there really is something wrong with them. Although it would explain a lot and let us know how to help them, it is scary and overwhelming to think of hearing some syndrome or problem your kids have. Not to mention our concern for Nathan's upcoming ear tube surgery on Tuesday and the fact that both boys have been trying to come down with something all week and have terrible coughs,congestion, and low grade fevers. The ped put Nathan on abx today as a precaution in the hopes of keeping him healthy enough for the surg on Tues. I feel as though my nerves are wearing very thin right now. This is just all so very overwhelming and I am trying SO hard not to give much thought to our very uncertain future, but it creeps into my mind when I am trying to sleep and I cannot help but worry. I do not normally like to ask for much from those who read this site, but I would truely appreciate any prayers you could spare for peace for me right now. I am in such inner turmoil right now and I hate feeling so unsettled. I know things could be si much worse and it makes me almost ashamed to feel like this, but this is much more than I was ever expecting to be dealing with as far as Nathan is concerned and I am not quite sure how to handle these feelings right now.

Ok...done with the drama for today...on to better news! Nathan FINALLY was able to get up onto all fours in a crawling position all by himself this past Monday! He can now stay that way and rock back and forth for about 5 sec or so! WOOHOO!! One step closer to crawling!!! Nicholas went in the potty this morning and it was enough to fill the bottom of the bowl!! And, after naptime, he went enough to fill about 1/2 the bottom of the bowl!! WOOHOO!! One step closer to potty training!!! He is now in big boy pull ups and feeling pretty big for his britches right now! We are so proud of them both right now!

Guess that is about all for us right now. I promise I will update after the surg on Tues and let you know how it all went. I am sure it will be very routine and we will be home before lunchtime, but I will let you all know how it goes anyways! Take care everyone and God bless each and every one of you!

Saturday, March 11, 2006 8:52 PM CST

Sorry for the lack of updates. We have had a rough couple of weeks, emotionally speaking. Sorry if we worried anyone needlessly by not updating sooner.

Most of you remember the last update when we learned that Nathan would need a stander to improve his weight bearing. This came as a big surprise as we were not expecting him to be in need of any adaptive equipment. I have to say, this made me have to confront many toughts that I have been trying to ignore and push to the back of my mind for some time now. I have been trying to stay positive and not let any of these delays get me down. I keep trying to remind myself to look at Nicholas and how well he did...how far he came...how quickly he caught up. I think I have known for a little while now that Nathan was just not "catching up" like Nicholas did and Nicholas' delays were never as big as Nathan's have been. When I heard "stander", it just flooded my brain with all these things I was not prepared to deal with just then. I have had time to deal with these feelings and thought I was ok. The stander arrived with the PT on Wed and I was ok with it. I was actually thinking how good this would be for him and how this would hopefully speed him along to walking and crawling. Sadly, I ended up being disappointed as no matter how hard the PT and I tried, we just could not make the stander fit him. He is too small for it. It ended up leaving with her at the end of a long, sweaty, and frustrating 1 hr 20 min. It was so upsetting for me because he LOVED being in it and upright for a change! We were also dealt another wrench in the plans as well when the therapist recommended to us, after seeing how Nathan looked standing in the stander, that Nathan needed AFO's (Ankle Foot Orthotics), which is leg/foot bracing. I called the ped's office, who then referred us to the ortho's office, who (through some small miracle) was able to get us in for an appt that same day! We arrived and I totally could sense the confusion on his face since we were just there for Nicholas to be evaluated. This time was much different. Nathan does need them. His foot joints are so hyperflexible that the top of his foot can lay flat against his shinbone! The laxity of the ligamants coupled with the low muscle tone make it near impossible for him to keep his leg bones in proper alignment and his ankles roll everywhere, his knees buckle a lot, and he just cannot coordinate it all together on his own. We called Dynamic Orthotics and have an appt for an AFO fitting on March 22. I am not sure yet how I feel about this. He now has a pair of brand new sandals he will never wear. He will have to wear knee socks all summer in the heat to protect his legs from the tall braces. I am just sad mostly, I guess. Sad because this is not at all what anyone would want for their child. Sad because I want so much more for him than this struggle he is going through right now. And sad because this is just the beginning of a long road for us all that I do not want any of us to have to be on. It makes me very worried and concerned for the upcoming genetics appt. I am dreading it because I am so afraid they are going to find out that there really is something wrong with them. Although it would explain a lot and let us know how to help them, it is scary and overwhelming to think of hearing some syndrome or problem your kids have. Not to mention our concern for Nathan's upcoming ear tube surgery on Tuesday and the fact that both boys have been trying to come down with something all week and have terrible coughs,congestion, and low grade fevers. The ped put Nathan on abx today as a precaution in the hopes of keeping him healthy enough for the surg on Tues. I feel as though my nerves are wearing very thin right now. This is just all so very overwhelming and I am trying SO hard not to give much thought to our very uncertain future, but it creeps into my mind when I am trying to sleep and I cannot help but worry. I do not normally like to ask for much from those who read this site, but I would truely appreciate any prayers you could spare for peace for me right now. I am in such inner turmoil right now and I hate feeling so unsettled. I know things could be si much worse and it makes me almost ashamed to feel like this, but this is much more than I was ever expecting to be dealing with as far as Nathan is concerned and I am not quite sure how to handle these feelings right now.

Ok...done with the drama for today...on to better news! Nathan FINALLY was able to get up onto all fours in a crawling position all by himself this past Monday! He can now stay that way and rock back and forth for about 5 sec or so! WOOHOO!! One step closer to crawling!!! Nicholas went in the potty this morning and it was enough to fill the bottom of the bowl!! And, after naptime, he went enough to fill about 1/2 the bottom of the bowl!! WOOHOO!! One step closer to potty training!!! He is now in big boy pull ups and feeling pretty big for his britches right now! We are so proud of them both right now!

Guess that is about all for us right now. I promise I will update after the surg on Tues and let you know how it all went. I am sure it will be very routine and we will be home before lunchtime, but I will let you all know how it goes anyways! Take care everyone and God bless each and every one of you!


Melody

Friday, March 3, 2006 11:52 AM CST - Happy Birthday yesterday, Dad!

I have been trying to write this update for several days now and keep erasing it because I am not really in a place where I am ready to accept this yet. We found out on Wed when the PT was here that Nathan will be getting a loaner stander for a while. His weight bearing is improving, but not enough and he needs this for the crawling to happen. I am so thrilled that we have such an awesome PT who is willing to do whatever to help Nathan achieve his potential better and faster, but hearing that he is in need of adaptive equipment was not something I was quite ready for right now. And, on the heels of finding out about my own health issues AND his tube surgery, it has not made for the best past couple of weeks. Add that to the stress of the upcoming genetics appt for the boys and that was kind of the straw that broke the camel's back, so to speak. I am in a slightly better place today, but I am learning that everything is an adjustment...this one just happens to be a much bigger one than I was expecting. It has brought up a lot of feelings, emotions, and questions that I have been avoiding and pushing to the back of my mind for some time now and now I am having to deal with them all at once. Anyways, so that is our news for the week so far.

Also, I decided to do something for myself for a change and joined this really nice gym near our house. I am hoping that, by shelling out big bucks every month, I might be more motivated to exercise knowing that I am paying through the teeth for it. Wish me luck...I am hoping to walk out of there tonight after the first visit. Otherwise, Doug may be dragging my sore and lifeless body to the car once I am done! If you see him taking over the updates for me, it is probably because I am recovering from the shock to my system from actual exercise!

Anyways, just thought I would let everyone know what has been going on here with us this week. I needed to purge this information anyways to get it off my chest. It is sometimes very theraputic to come here and unload the things that get us down sometimes. Once I can get rid of it, I many times feel a lot better about the news we have been given. Thanks to everyone who are regular readers of this site and pray for us and leave encouragement and support in the guestbook. I often do not come across as appreciative as I truely am to have such special people caring about us and our kids...it is a treasure to come and read notes left and see more visits on the counter and know people are coming because they care. Thank you so much from the bottom of our hearts for everything you do to support us through this journey. Take care and God bless each and every one of you special people.


Melody


-----------------------------------------------------------

Tuesday, February 28, 2006 10:02 AM CST

Before I even go into this week's installment of the family medical drama, I would really like to thank everyone for their kind words, thoughts, and encouragement in the guestbook. It is SO nice to know that we are being thought of, especially when we have had a rough week. I thank each of you from the bottom of my heart. And, if somehow, this helped someone go to the dr and get something checked out, I am glad that hearing about my health helped motivate you to do so. I think so many times, as mommies, we put ourselves on the back burner and ignore or put off things since our kids needs always are always at the forefront, first and foremost. I know for me the last place I want to go for me is the dr when I have no dr appt to run the kiddos to. I have also realized that I cannot do my best job advocating for my kids when I have my own health issues I am ignoring. They need me and I need to take care of myself as part of my care for them.

Yesterday was Nathan's ENT appt and hearing test. As expected, it was not a great hearing test, although I was thinking it was not going to be quite as bad as it ended up being. They first did the part where they blow a puff of air into the ear to see how the eardrum responds (tympanogram?) and his ears were basically a flatline because of the amt of fluid pushing against the eardrum...it had no room to move. He only heard one out of 4 of the tones she played and did not notice the dancing toy until it had been going off for a min. He did a little bit better with her voice, but not by a whole lot. The ENT called this a "significant conductive hearing loss". That part was hard to hear. He said that they usually try not to jump the gun with surgery as they like to try to give the fluid a chance to clear on it's own first before progressing to more invasive treatment. Well, since is has been basically 3 mos solid that the fluid has been there, he decided that was more than enough and, coupled with the hearing loss and the fact that he is getting progressively speech delayed, made him feel he needed tubes ASAP. Since next month starts Spring Breaks around here, their surgery schedule was pretty full, but they squeezed him in on March 14th at 7:30...we have to be there at 6 am!!! Ah, well. He said also, due to Nathan's other "issues", he did not feel comfortable doing the procedure at an outpatient surgery center and wants to do it downtown at TCH in the main OR area. He asked if that was ok...well, if he is not comfortable doing it elsewhere, I am sure not going to argue with that! Besides, after having the problems with airway irritation after the last surgery, I would rather not take chances anyways, so TCH it is. Not really what I was expecting or wanting, but we have got to do something about fluid and the infections. It is not so much the tubes...I have no problems with those. It is the fact he will be having 2 surgeries before his 1st birthday and the fact that he had some problems with anesthesia/intubation last time. It is surreal at times to be the parents of a child with medical needs like this and things that others take for granted as "normal", we do not get to see often. Our "normal" is medical problems taken to an extreme...not just reflux, but reflux bad enough to require surgery and TPN and continued dependance on a feeding tube to maintain weight and grow. Not just developmental delays, but global delays where you have a slightly abnormal MRI where nobody can tell you prognosis or if he will ever "catch up". Not just illnesses, but an immune deficiency that he MIGHT outgrow. We give meds on a dfaily basis and not just when they are sick. At one point, Nicholas was taking 12 or 13 daily meds...now, thankfully, we are down to 7 or 8. I am just ready for our lives to settle down and not be so focused on medical issues. Hopefully that day is coming soon for us! I keep hoping.... :)

My sister went to her follow up appt yesterday and found out her lab results. She has all the same issues as me, except that, where mine were just plain bad, hers were borderline bad. Her labs were all better than mine, but not enough to be considered good. Her treatment plan was not as clear cut as mine, but they opted to start her on hormone control, though not the pill, and the glucophage treatment as well. I have to say that the glucophage has been helping me with the weight loss I need. It has an effect of appetite suppression and I have lost over 2 lbs already in just the first week. She is hoping to have the same luck with hers as well.

Doug had a really good birthday, minus some behavioral issues from Nicholas. Nicholas and I made him a cake and decorated it and it looked good and tasted even better! Nicholas had picked out all the decorations and enjoyed helping me with it. He liked singing to daddy even better. Happy Birthday is one of his favorite songs to sing. Doug made out like a bandit as well. The theme, it seems, for this birthday was work clothing. He got 7 pr of work pants to add to the one pr he already has that is actually the right size and fits him. He also got a really nice deep green colored dress shirt, a pack of black socks, 2 beautiful ties, and a tie tac...all things he desperately needed and was too stubborn to buy for himself or let me buy for him. Finally he got a surround sound speaker system with a tuner (to replace the tuner that just died) that he has been wanting for years and a gift card to Best Buy. Now that last one is going to be a fun one to spend! We had a nice visit with his family over the weekend to celebrate, although he was disappointed that the parade was rained out. Maybe next year for that one...

Things seem to be going ok for the boys for the most part. Nicholas is still challenging authority and testing boundaries as much as he dares to. He is finding out just how serious we are when it comes to receiving consequences. The mama in me hates having to discipline him, but the teacher in me will NOT let him grow up being a child who does not know how to act or behave. We have been cracking down so much and it makes me feel SO bad. What else are you going to do though? I sure am hoping that this is just a phase he is going through and once he realizes that he is not going to be able to get away with misbehavior, he will ease up some and settle down. If it does not ease up soon, we might be looking into finding some play therapy for him again. He seems to have a lot of pent up feelings that I am not sure where they are coming from and that concerns me. I am cossing my fingers that it is just a phase, but we are watching it just in case it is something more than that.

My little baby Nathan is now a big 11 mos old!!! Can you believe it?? The time has surely flown right by us and his birthday is less than 4 short weeks away from now. I am so thrilled to see the progress he has made in just a year, but att he same time, I have very bittersweet feelings about it as it is sad to know he is growing up and will not be my little baby for much longer. Nathan continues to do well with his therapy. He WANTS to crawl SO bad...you can just tell. He is starting to get good at commando army crawling and can dig in his elbow and scootch across the floor on his belly. The therapy goal is to have him crawling by his birthday. His torticollis is resolving well and now, you can really only tell he has it when he is tired or when he is sleeping. Otherwise, he is doing really well and working against it to hold his head up straight and use the neck muscles properly. His head is looking MUCH better, too, with regards to the plagiocephaly. He just has one small flat spot in the back now...the one on the side is almost completely gone and the ped is really happy with how things are looking now.

Guess that is about all for now. I have a specific prayer request...we have friends up in MN who have a new baby girl who looks like she might have some genetic issues like her older brother. The family is understandably really upset right now and has been left in limbo while they wait for an appt to discuss test results with the geneticist. Please pray for them right now, if you can...this was the last thing they expected to hear and I am sure it is a very scary time for thm right now until they know something definitive. Thanks again for all the wonderful prayers and good thoughts sent our way. It means so much more to us than you can ever know. We are so very blessed to have such sonderful people checking up on us. Take care and God bless!!

Tuesday, February 28, 2006 10:02 AM CST

Before I even go into this week's installment of the family medical drama, I would really like to thank everyone for their kind words, thoughts, and encouragement in the guestbook. It is SO nice to know that we are being thought of, especially when we have had a rough week. I thank each of you from the bottom of my heart. And, if somehow, this helped someone go to the dr and get something checked out, I am glad that hearing about my health helped motivate you to do so. I think so many times, as mommies, we put ourselves on the back burner and ignore or put off things since our kids needs always are always at the forefront, first and foremost. I know for me the last place I want to go for me is the dr when I have no dr appt to run the kiddos to. I have also realized that I cannot do my best job advocating for my kids when I have my own health issues I am ignoring. They need me and I need to take care of myself as part of my care for them.

Yesterday was Nathan's ENT appt and hearing test. As expected, it was not a great hearing test, although I was thinking it was not going to be quite as bad as it ended up being. They first did the part where they blow a puff of air into the ear to see how the eardrum responds (tympanogram?) and his ears were basically a flatline because of the amt of fluid pushing against the eardrum...it had no room to move. He only heard one out of 4 of the tones she played and did not notice the dancing toy until it had been going off for a min. He did a little bit better with her voice, but not by a whole lot. The ENT called this a "significant conductive hearing loss". That part was hard to hear. He said that they usually try not to jump the gun with surgery as they like to try to give the fluid a chance to clear on it's own first before progressing to more invasive treatment. Well, since is has been basically 3 mos solid that the fluid has been there, he decided that was more than enough and, coupled with the hearing loss and the fact that he is getting progressively speech delayed, made him feel he needed tubes ASAP. Since next month starts Spring Breaks around here, their surgery schedule was pretty full, but they squeezed him in on March 14th at 7:30...we have to be there at 6 am!!! Ah, well. He said also, due to Nathan's other "issues", he did not feel comfortable doing the procedure at an outpatient surgery center and wants to do it downtown at TCH in the main OR area. He asked if that was ok...well, if he is not comfortable doing it elsewhere, I am sure not going to argue with that! Besides, after having the problems with airway irritation after the last surgery, I would rather not take chances anyways, so TCH it is. Not really what I was expecting or wanting, but we have got to do something about fluid and the infections. It is not so much the tubes...I have no problems with those. It is the fact he will be having 2 surgeries before his 1st birthday and the fact that he had some problems with anesthesia/intubation last time. It is surreal at times to be the parents of a child with medical needs like this and things that others take for granted as "normal", we do not get to see often. Our "normal" is medical problems taken to an extreme...not just reflux, but reflux bad enough to require surgery and TPN and continued dependance on a feeding tube to maintain weight and grow. Not just developmental delays, but global delays where you have a slightly abnormal MRI where nobody can tell you prognosis or if he will ever "catch up". Not just illnesses, but an immune deficiency that he MIGHT outgrow. We give meds on a dfaily basis and not just when they are sick. At one point, Nicholas was taking 12 or 13 daily meds...now, thankfully, we are down to 7 or 8. I am just ready for our lives to settle down and not be so focused on medical issues. Hopefully that day is coming soon for us! I keep hoping.... :)

My sister went to her follow up appt yesterday and found out her lab results. She has all the same issues as me, except that, where mine were just plain bad, hers were borderline bad. Her labs were all better than mine, but not enough to be considered good. Her treatment plan was not as clear cut as mine, but they opted to start her on hormone control, though not the pill, and the glucophage treatment as well. I have to say that the glucophage has been helping me with the weight loss I need. It has an effect of appetite suppression and I have lost over 2 lbs already in just the first week. She is hoping to have the same luck with hers as well.

Doug had a really good birthday, minus some behavioral issues from Nicholas. Nicholas and I made him a cake and decorated it and it looked good and tasted even better! Nicholas had picked out all the decorations and enjoyed helping me with it. He liked singing to daddy even better. Happy Birthday is one of his favorite songs to sing. Doug made out like a bandit as well. The theme, it seems, for this birthday was work clothing. He got 7 pr of work pants to add to the one pr he already has that is actually the right size and fits him. He also got a really nice deep green colored dress shirt, a pack of black socks, 2 beautiful ties, and a tie tac...all things he desperately needed and was too stubborn to buy for himself or let me buy for him. Finally he got a surround sound speaker system with a tuner (to replace the tuner that just died) that he has been wanting for years and a gift card to Best Buy. Now that last one is going to be a fun one to spend! We had a nice visit with his family over the weekend to celebrate, although he was disappointed that the parade was rained out. Maybe next year for that one...

Things seem to be going ok for the boys for the most part. Nicholas is still challenging authority and testing boundaries as much as he dares to. He is finding out just how serious we are when it comes to receiving consequences. The mama in me hates having to discipline him, but the teacher in me will NOT let him grow up being a child who does not know how to act or behave. We have been cracking down so much and it makes me feel SO bad. What else are you going to do though? I sure am hoping that this is just a phase he is going through and once he realizes that he is not going to be able to get away with misbehavior, he will ease up some and settle down. If it does not ease up soon, we might be looking into finding some play therapy for him again. He seems to have a lot of pent up feelings that I am not sure where they are coming from and that concerns me. I am cossing my fingers that it is just a phase, but we are watching it just in case it is something more than that.

My little baby Nathan is now a big 11 mos old!!! Can you believe it?? The time has surely flown right by us and his birthday is less than 4 short weeks away from now. I am so thrilled to see the progress he has made in just a year, but att he same time, I have very bittersweet feelings about it as it is sad to know he is growing up and will not be my little baby for much longer. Nathan continues to do well with his therapy. He WANTS to crawl SO bad...you can just tell. He is starting to get good at commando army crawling and can dig in his elbow and scootch across the floor on his belly. The therapy goal is to have him crawling by his birthday. His torticollis is resolving well and now, you can really only tell he has it when he is tired or when he is sleeping. Otherwise, he is doing really well and working against it to hold his head up straight and use the neck muscles properly. His head is looking MUCH better, too, with regards to the plagiocephaly. He just has one small flat spot in the back now...the one on the side is almost completely gone and the ped is really happy with how things are looking now.

Guess that is about all for now. I have a specific prayer request...we have friends up in MN who have a new baby girl who looks like she might have some genetic issues like her older brother. The family is understandably really upset right now and has been left in limbo while they wait for an appt to discuss test results with the geneticist. Please pray for them right now, if you can...this was the last thing they expected to hear and I am sure it is a very scary time for thm right now until they know something definitive. Thanks again for all the wonderful prayers and good thoughts sent our way. It means so much more to us than you can ever know. We are so very blessed to have such sonderful people checking up on us. Take care and God bless!!


Melody

Tuesday, February 21, 2006 0:41 AM CST

Well, I have been dx with PCOS (polycystic overian syndrome) for 10+ yrs now and I thought my gyn was treatning it. Turns out, after watching a show on DHC, I found out that much has been learned over the past 10 yrs about it and there were many tests that should be run that I never had done and several other related health issues that are now included with this dx than just cystic ovaries. I took it upon myself to make an appt with a Reproductive endocrinologist to get re-evaluated for pcos and see what, if anything, needed to be done that had not already been done.

I went in for the initial appt 2 wks ago. I met with the dr in her office and she took an extensive family history. I have a significant family history of diabetes (both parents and probably a cousin now have type II) and heart disease (dad and g'ma both have high bp and great-g'ma died from a stroke). I have had preeclampsia with both pg and probably gest. diabetes with Nathan and a history of hypoglycemic episodes since my early 20's. She thought that I was at significant risk for the metabolic issues associated with pcos and I had a full blood workup (minus the hormone tests I could not have due to nursing the baby). I went in last Wed to get the draws and then today for the follow-up appt to review the bloodwork. I feel pretty good and I am young, so to say I was shocked at the results would be an understatement. First off, a hallmark of pcos is elevated testosterone, which was confirmed (70 when it should be less thn 50). Thyroid levels were normal, which was expected since I had them tested after Nicholas was born and they were fine. The metabolic testing was the one that really surprised me. She tested my cholesterol levels and triglycerides. The LDL chol, which is the bad chol's was 66 and they wanted it to be under 150, so that one was great! Then the HDL chol, which is the good chol's, they want to see high....the higher the better and def above 40...mine was 31 and the dr told me it was "the lowest she had ever seen"...not good. To determine the risk of heart disease, they use the ratio of HDL to LDL...the lower the better and mine was high. She is going to give it a few mos and see how things are going on the new treatment and if no improvement, then I will start meds for chol. Triclycerides are supposed to be under 150 and mine were 243...very high. My liver enzymes were high and she said that was indicative of Fatty Liver Disease and she is referring me to a liver specialist downtown in the Med Center to be evaluated. I also had to get a Hepatitis B and C panel drawn before I left today, just to rule that out before I went to the specialist. My fasting insulin levels were also done. She said at their clinic, they consider 100 to be diabetic and mine was 94. They said someone my age should be in the 70's. Also, women with pcos have lower normal ranges for fasting insulin and that level was too high for her to consider normal. I am now dx as a prediabetic. She said my diet has nothing to do with the metabolics as I eat pretty healthy...she chalks it up to bad genetics. I also have "central obesity"...an abnormally high amt of fat in my belly as compared to relatively normal sized rest of the body...also a hallmark of the metabolic issues. Basically, I have the "package deal"...everything metabolically wrong with pcos that could be wrong, I have. I started taking glucophage tonight and am to work up to 4 pills/day (2,000 mg) by 4 wks from now. I am to start the maintenence phase of the South Beach diet, eat sugars in moderation, and exercise 5 days a week with cardio. I have had exactly 2 cycles since it returned 3.5 mos ago. The second one was regular, the 3rd one is already late by more than 2 wks and counting, so they are back already to being irregular. I am to start taking the bcp again to keep all the hormones in check. I have to get my liver enzymes checked in 2 wks and then every month after that for the next 3 mos. I go back to see the dr in 2 mos to see how I am doing.

I am still reeling from all this information. Just one month ago, I was a happy and healthy 32 year old who did not have to worry about heart disease, high chol, and diabetes. In just a few short weeks, I went from blissfully ignorant to feeling like a walking time bomb...worried now about liver disease, high chol, diabetes, heart disease, carbs, weight, exercise, and on and on. My sister and my mom, at my urging, also made appts. My sister just had the full workup done last week and will be getting her labs reviewed a week from today. My mom is already being treated as a diabetic and being seen by a cardiologist, so the dr was satisfied with her care. My whole family is in somewhat of a state of shock right now and I have a feeling it will be more so once my sister goes in for her testing. Mostly, I am frustrated with my gyn. She dx me 10+ yrs ago and I have NEVER had even one test done...nothing at all! She, I thought, was supposedly treating my pcos, and,being blindly trusting, I never did any follow up on it after my inital research when first dx. Had it not been for that one medical show I happened to watch that one night a few short weeks ago, who knows how long this would have gone undx. Who knows how much more damage could have been done? Who knows what med crisis could have come up as a result of all this. Who knows how long this has been going on untreated while I was trusting my gyn to manage my care for it. I am angry and frustrated and ashamed that I would blindly put so much trust in a dr for care and not do my own homework to make sure things were being managed accurately. I should have known better after what we have learned with dealing with my boys and their issues. It saddens me that so many of us have had to resort to info we gather on the internet or from watching a tv show to dx ourselves/our kids and get the help we need when we know something is wrong, instead of being able to trust the drs to take care of it and not blow us off when we ask about things...there is just something so fundamentally wrong about that.

Anyways, enough of that...on to more important things. Doug and I spent the better part of the weekend deep cleaning Nicholas' room, moving the big crib into the other bedroom, and getting Nathan's nursery set up in preparation to move him out of our room and into his own. We had A LOT of work to do and it looks pretty darn good if I do say so myself!

Nathan is making good progress on his introduction to the bottle/sippy sup. He has gone from not even putting it into his mouth to teething on it to chewing the liquid out to actualy sucking on it. He drank 4 oz of formula the other day...a very bittersweet moment for me since I have been exclusively breastfeeding since he was born.

He is making great strides in therapy as well. His pincer grasp is awesome....food is a good motivator for him and he will wear that finger and thumb out grasping food and shovelling it in! His sitting is looking SO good and he is feeling stable enough in a sit that he is actually kicking his feet and going into a side sit all on his own! We are super proud of him!

We are trialing him off his Prevacid since Friday and that is not going well. We have heard him constantly gulping since then and are awaiting a call back from the GI to see what needs to happen now. I am guessing he is not quite ready to go off it just yet.

Nicholas is being a typical 3 yr old...very insistant on getting his way and he is seing more of the time out corner than ever lately. He is slowly learning his lesson, I think. Health-wise he has been doing really well this winter so far, minus the one bad bug they both had back in Jan. Being off the prophyllactic abx has gone much better than I would have ever thought, given our rocky start. I am pleasantly surprised!

It has been SUPER cold here the past few days...needless to say the swingset is not getting much use this past week! Both the boys had a really good visit with my sister twice last week and today and also with friends on Thursday and my parents on Friday, which was so much fun. It had been too long since we were all able to get together to play with them. We had a nice lunch and plenty of grandparent time.

Nicholas had a birthday party for a little friend on Friday night and we all had a blast! There was a puppet show, face painting, balloon animals, yummy snacks, delicious cake, and fun dancing to loud music. Not the typical kids birthday party we are used to, but a whole lot of fun!!

We have been enjoying the Olympics and looking forward to Doug's birthday on Wednesday! Doug asked specially to go to the Rodeo parade this coming Sat morning to celebrate his special day with the boys, so, weather permitting, we are making the trek downtown to watch and then will be going up to his parents' house for the remainder of the day to continue the festivities.

Anyways, guess that is about all for us for the time being. I think I am going to keep the updates to weekly since someone told me they liked my updates better when they are not daily...they are more upbeat and positive. I surely do not want to drag anyone down with negatives all the time, so I am going to try it and see how it works out. I hope this update finds you all well and happy. Take care and God bless!


Melody

Monday, February 13, 2006 9:21 PM CST - Happy Birthday yesterday, Betty! Happy Birthday today Robin and Connor!! Happy Valentine's Day tomorrow!!

What a long day today! We had Nicholas' renal ultrasound and urologist appts today. I left here at 10:45 to pick up Doug at work and we did not arrive back home until almost 8. We got to TCH early enough to eat lunch before the test and then went down to diagnostic imaging to sign in. They were running late and the test went quickly once we were called in. Nicholas was SO brave and laid still and watched the screen to see his kidneys and bladder when they showed up. I had promised him it would not hurt and I am not sure he bought that 100% until he was on the table and saw for himself. After that, we went up to the urology clinic and signed in. We had no specific appt time since we were to just come up after the test ended and so we waited some more. We finally saw the dr after about an hour of waiting (they were running behind as well) and the dr pulled up the results on the comp. Thankfully, anatomically speaking, things look ok. What he thinks is happening is that Nicholas' hypotonia is affecting his bladder muscle as well and it is delayed somewhat as far as strength and maturation is concerned. He feels that, given some more time, things should improve eventually with his incontinence. If not, then we are to go back and he will look more at further testing. He did not think further testing was warrented just yet, and I am so glad as this poor child has been through enough. I am not willing to put him through any test at this point unless it is necessary, especially ones that are unpleasant. Nicholas was glad to get out of there and was rewarded for his bravery with a brand new matchbox car-sized train engine. So...now we sit...and wait...

This weekend was also busy for us. We woke on Sat to go to my nephew's 2nd birthday party. The kids were all so cute and Nicholas actually ate an entire piece of cake for the first time ever...I was so proud of him! We enjoyed visiting with the family as well. After that, we had an errand to run and then we went to a local craft show for about an hour before I pooped out. I have been sick since Fri and the long day took a lot out of me. I slept for 11 hrs total overnignt, although not all at one time. I think all the teething and ear infections and sickness keeping the boys up at night are finally catching up with me. Yesterday I had a baby shower to go to and Doug took the boys out to lunch and to run some errands while I was gone.

As for me, besides being sick, I still have not heard back about my test results yet. My sister and mom went in to see the same dr today and my sis is also going to be tested as well this Wed. Since my mom is already being seen by a cardiologist and also being treated for her diabetes, the dr did not feel she needed testing at this time. I think I am going to be calling tomorrow if I have not heard anything.

Guess that is about all for us for the time being. I will update if I hear anything more about my test results. Take care, God bless, and have a wonderful Valentine's Day everyone!


Melody

Wednesday, February 8, 2006 11:59 PM CST

Whew! I have had every intention of updating and every night it is too late and I am out of time! It has been a hectic few days around here lately to say the least.

Nathan had his ear recheck yesterday after the latest ear infection. The good news is that the infection is gone! The bad news is there is still a ton of fluid in both ears and the ped wants us to go to the ENT to have him checked out and get his hearing tested. I am not really thrilled with this latest development, but I guess it is about par for the course with our kids these days. He will go in on 27th for all of this.

In other news, Nathan is FINALLY sitting up like he should be! Yeah!! It only took until 9.5 mos of age, but it was WELL WORTH the wait! His love of food led him to discover the joys of self-feeding and he has done well with improving his pincer grasp. He can isolate his thumb and forefinger pretty accurately now. Gotta love those Cheerios! He is rolling like a champ now, too. The new goal for PT is for him to be crawling by his first birthday. He sure is motivated, so I am sure we will get there!

Nicholas gets his renal ultrasound and appt with the urologist on Mon. Not looking forward to this appt either as I just really cannot deal with hearing that something else is wrong. I sure hope it is more of a delayed maturation thing, but with our kids I have already learned to never assume it is going to be something simple. That way I can be thrilled when it turns out to be an easy fix or no big deal at all. Speaking of no big deal, we went to the Ortho to have his feet/ankles looked at last week and he is ok...no need for orthotics at this time. He is flat-footed and has pronation, but he has flexible flat-footedness and that is something he hopefully will outgrow...so, for now we do nothing and just watch it! Whew! That sure was a load off our minds!

As for me, I finally decided to take care of myself for a change, thanks to an article in my parents' diabetic magazine and a medical show on Discovery Health Channel I happened to watch. I have something called PolyCystic Ovarian Syndrome (PCOS) and apparently there have been huge advances made in treatments and symptoms/related health problems since I was first dx 10 yrs ago. In light of this new information, I looked online and was shocked to discover that there was a lot that has never been checked out and looked into with regards to my health...all new discoveries I has never even been told about by my dr. I saw a reproductive endocrinologist on Mon and she gave me a lab slip for every test known to man it seems. I have a significant family history of cancer, diabetes, and heart problems associated with heart disease and I have never been checked out for any of it. This is especially important as all of these problems are associated with PCOS. I also have several halmark symptoms of a metabolic disorder and will be needing to look into changing my diet to include food choices like what is offered on the South Beach diet and also exercising more often as well as watching cholesterol (also associated with PCOS) sugar, and fat intakes. When she told me that the new treatments they have discovered and implemented could "prolong my life" I knew how serious this was and was so thankful I had seen the show and read the article and taken the initiative to reevaluate this condition I have. I go in for all this bloodwork Friday morning and, to be totally honest, I am really dreading it. My blood pressure was high on Monday at the appt and I already know that is not a good sign, so all these tests make me feel on edge as to what the results will be. I guess, at 32, I never really sat back and thought about my own mortality before. Those words she said to me really hit me hard. I am too young to be worrying about high cholesterol, diabetes, and heart disease and yet, here I sit, waiting to take some tests that could forever change my life. My sister is in the same boat as I am and will be going in to this same dr next Mon for a reevaluation as well. My mom is more than likely going to go in with her and we will all get to the bottom of this within our family. Since they feel this is a genetic disorder, I am so glad they are getting checked out as well. I want them happy, healthy, and with me for as long as I can keep them here! Anyways, enough of that drama...I will keep you posted about things as they come up.

On a good note, Doug bought me the most wonderful pot and pan set for Valentine's day! They are by All Clad and I swear....there is a HUGE difference in the taste, texture, and preparation of food when you use a really nice set of cookware! Needless to say I am LOVING them and actually looking forward to cooking on them! Now THAT has GOT to me a miracle!!!

Hope everyone is having a great week and I promise...I will try to be better about updating! Take care everyone and God bless!


Melody

Thursday, January 26, 2006 8:48 PM CST

Well, things have been hectic around here to say the least. Just when I thought we were finally getting settled around here and everyone was feeling better, we went into the ped today to find out that Nathan has yet ANOTHER ear infection. Thankfully, it is just one ear, but he said it looks pussy and bad. The other just has fluid...not great, but definitely better than an infection! He is now on a pretty hefty dose of Augmentin to see if we can clear this once and for all. He was unsure if this was leftovers of the last round that just got worse instead of healing fully or if this is a new infection after the other one cleared. We are talking ENT, but will have to wait and see what the next couple of mos has in store for us. Hopefully nothing! I have aired out the house and we have been cleaning with Clorox wipes AND doing a ton of handwashing, so I have NO idea where these are coming from.If you count the double ear inf he had last time as 2 inf, he has had 4 in the past 4 mos and if you count them as one, he has had 3 in the past 4 mos. Either way, it is not great. Strange though, since our ped calls Nicholas the "poster boy for perfect ears"...he has NEVER had one.

Ah, well...on to other things...

Yesterday, Nathan had PT. For some reason, I totally forgot that she was coming today and woke up to the sound of her knocking at the door. I am trying to get used to this whole once a week therapy thing. Anyways, my brain was very foggy when she was here since I had just woken from a dead sleep and then had to change FAST. Nicholas woke shortly after she arrived and I went and got him up while she was working with Nathan on the floor. I changed Nicholas' diaper and left him in his pj top and diaper only since I was going to do his weekly weigh in once she left. He was running around while the therapist was working with Nathan and went over to see what they were doing. The therapy was going REALLY well. She was crouched down and looked up at him and then down at his ankles and then asked me if we knew he had pronation in his ankles. I told her that I didn't and she showed me. Sure enough, the left ankle was turning in and the right one was worse. She asked if he had been followed by PT when he was in ECI and I told her he was evaluated before he was walking and that was it, no therapy as it was not deemed necessary at the time. She told me that we may want to consider looking into orthotics for him, but at this point they may or may not work. She asked about both of us (I wore a brace on one foot when I was first walking and dh has terribly flat feet) and we went into specifics about what the implications/options were and she thinks we should talk to the ped about an eval for orthotics. I was totally taken aback since he was dismissed from ECI at 3 and this was never really brought up as an issue. My first inclination was to talk to his OT who has worked with him since the age of 13 mos and knows him since befoe he was walking after the PT left. She called me right back and we chatted for a bit and I was so disappointed in her after we hung up. She told me that she had always had concerns about his ankles from the hypotonia but for some reason every time it came up, it was never pursued and got "brushed to the side". I am the kind of person that I will do something if I am told it needs to be taken care of, looked at, whatever...but she never told us specifically get it looked at and never really expressed to us great concern over it either, so we never did. It was more like a "let's wait and see..." kind of a thing. She even told me she had noticed YESTERDAY when she was there to see Nathan that Nicholas was toe walking a lot and she noticed his ankles (again wearing no pants after he first woke until I could change his clothes) but she NEVER said ANYTHING. Then she goes on to tell me that bracing and orthotics are not really an OT thing and more of a PT thing anyways, so she would defer to the PT on this one about getting it looked at or not. I was in shock as this therapist was SO good to us while she worked with Nicholas...or so I thought anyways. I have no idea how this happened and went without being addressed. I keep wondering if this is a new thing that has popped up, something that has been there and just gotten progressively worse, or if this has been there all along and nobody adressed it. I KNOW we would have had it looked into if someone had told us to. Our ped's gf is a PT and he takes those referrals really seriously. So, after talking to the PT abut it earlier, it seems we have a few options...

* do nothing...many people have pronation, but can eventually have problems like hip and lower back pain from it (like dh is having now...I need to check his ankles when he gets home since he is flat footed). But, since Nicholas has hypotonia, his will most likely never improve fully without intervention.

* look into some type if insert or innersole for the shoe and see if that helps, though she could not tell me a lot about who to go see for those kind of things since Nicholas is older than most kids she sees.

* look into SMO's or something like Sure Steps for him to wear for a year or 2 and see how much pronation remains, if any.


I am clueless about all of this and feel very let down by the OT. She has been the BEST therapist we have had through ECI! How could this have gone unnoticed? Is there a chance that this could have been ok up until lately and then gotten worse for some reason? I know we were watching it right after he started walking to see if he would need them, but they were not pronated then to my knowledge. I feel so bad for not seeing this sooner myself, but since nobody ever seemed to think it was a problem at all, we did not really pay too much attention to it. And how could his therapist have had concerns all along and never really stressed the importance of it or followed up on them? Or noticed something YESTERDAY and NOT said anything?? Since we took Nathan in to the ped today, I had the dr look at Nicholas. He definitely has flat feet and that made it really hard for the ped to tell about his ankles. He was not totally sure if Nicholas would be ok without something or not, so we are now going to see the Ortho to get his input on all of this. That appt will be next week. So, now we just sit tight and wait.

Other than that, things here have been same-o same-o. My sister came last week to visit and my little nephew came down with Rotavirus the day after they were here. Needless to say, the weekend and early week were spent on pins and needles waiting to see if anyone here would come down with it. Thank goodness nobody here did. He is doing better and is on the road to recovery now. Tomorrow, we have a birthday party and DT and Sat, we have another party after we do riding lessons.

On a positive note, this week Nathan turned 10 mos old!! He also just started isolating his thumb and finger a little bit to pick up bits of food. We are SO proud! I will leave you with a couple of pics of my precious 10 mo old boy.





Take care and God bless every one of you! Hope you are all having a happy and healthy new year so far!


Melody

Wednesday, January 18, 2006 9:15 PM CST

Yesterday we went back to the ped...AGAIN...for a check of Nathan's ears and chest. His ears had more fluid in them (if that was possible said the ped) and looked pretty yucky still, but he also said they looked about like he expected them to, which I am taking as a good thing then. We had the last dose of Zithromax today, so hopefully they will continue to clear up from here. His lungs still sound terrible. The unfortunate part of this is that it could take up to 6-8 wks for this kind of damage to heal. We go back into the ped in 3 wks to check again and see how the lungs are doing....if it is still bad, then the ped will put him on a more long term inhaler or something like Flovent, which Nicholas takes. This does not make me happy at all since his wheezing is bad and he tires so easily these days. You can tell by how heavy he breathes. It was evident during therapy today, but he is such a trooper, and you would never even know it unless you were close enough to hear him. The ped started him on a round of Oropred to see if that would help move the healing along a little bit faster, but after day 1 of 4, we are not seeing a lot of progress yet. I am hopeful that we will by the end of the week. He is back to his alter self while on them though, expressing his 'roid rage today through a lengthy screaming session before he finally gave in and slept. He fought the nap so hard and I had to lay with him for quite some time before he would finally sleep. He was SO exhausted. At least no clawing and hair pulling so far. I dread the next dose this evening though. I just hope we make it through the next 3 days in one piece! Doug and I decided to go ahead and make Nathan an appt with the pulmo since he is having such difficulty. We also know how lengthy the wait is for a new patient at the TCH clinic and figured it was best to make it now and we can cancel if he is doing better before then. Currently the appt is scheduled for May, so we will see how things progress from now until then. I just want him to be better.

Therapy today went well. The PT was pretty impressed with him, even with his labored breathing and weakness from being so sick. He was still mostly smiles throughout and was working SO hard. We have made a goal to try to get him crawling by his first birthday, so we are hopeful we will get there. Tomnorrow we see the developmental therapist for DT and we will also be doing his 6 mo re-eval. It is looking like he may need another speech eval done as well, but his vocalizations have picked up the past few days since he has been feeling better and he is vocalizing to himself, which is something he has not previously done. He usually waits for someone to engage him first. He is also trying to babble for the first time with consonant sounds and has been saying "rahrahrah" for the past couple of days as well. My mom, who is a speech therapist herself, was thrilled when we called to let him show off to her. R is one of the most difficult sounds to make and we joked that since he has so many engineers in the family (dad and grandpas) that it would make sense for him to start out with the hardest way possible first! Watch him be the next engineer in the family!!

Nicholas is finally basically better. He had a really nice time at storytime today and seemed to really appreciate getting out of the house. He is so smart and recognized a 3 on the side of the fire station on the way there and was telling me that the moon came out when the sun went night-night and the sun was there when the moon was not. Last night we caught him sitting in his big boy bed at 11 pm just looking out the window at the moon. He is such an observer and really absorbs a lot of information that way. He impresses me daily with his thoughts and observations.

Guess that is all for tonight. I am just waiting for the remnants of this awful bug to finally be gone from my babies! It has done enough damage and we are ready for it to go away! Take care everyone and God bless!


Melody

Sunday, January 15, 2006 12:52 AM CST

Well, sorry again for the lack of updated. The boys have been SO sick and just not getting better as we would have expected them to. Nathan was throwing up and having diarrhea on Fri and we had to go back in to the peds office and get another injection and a rx for oral abx(Zithromax). His ears looked terrible still and the ped hears lots of popping, crackling and wheezing in his lungs. Since the xrays were clear for pneumonia, the ped is pretty sure all that he is hearing in the lungs is caused by severe inflammaion from the germ and all the coughing he has done all week. His airways have just not handled the irritation well and that resulted in some bad inflammation. He wanted us to kick up the breathing treatments to every 4 hrs round the clock. The ped thinks that he was throwing up from all the mucous in his tummy from the new decongestant we gave him making his coughs finally productive and the diarrhea was from the rocephin inj, but that plus his almost nonexistant appetite meant he was getting dehydrated to the point the dr was discussing admitting him for fluids. Thankfully we tried oral hydration at home first and he is drinking again and I think the meds are finally kicking in. He has not run fever since yesterday morning for the first time since last Sun night, so I think he has finally turned the corner. Whew!

We also moved Nicholas into a big boy bed finally. We had been waiting to see if we could wean him from his tube feeds before that, but it is not looking like that will be happening anytime in the near future, so we decided to go for it. Moving to a big boy bed meant leaving the binkies behind in the crib and also his beloved crib aquarium, but he shockingly agreed to it! We went out and bought some special big boy sheets he picked himself for that first night. He did really well Fri night and had no problems at all. Last night was a different story. The tube feeds had bloated his tummy terribly and he was trying to get out of bed to come tell us. He fell out of bed while trying to get out and hit his head on the edge of the dresser and very nearly pulled his tube out. When I got in there, he was laying in a crumpled heap on the floor and my heart was in my throat. Thankfully he didn't pull his tube out and was not seriously hurt (just a knot above his eye and a small cut where he bit his bottom lip) and he now understands that he needs to call for us and wait for us to come to him, especially when he is hooked up to his pump. He had a rough night and had problems with his tummy bloating to the point where we had to vent out all the formula in his tummy to relieve the pressure. There was also a ton of mucous in there as well as a lot of bile, so no wonder it was bothering him. Then, he had a blood sugar crisis because of the formula venting out so fast and he went all pale, clammy, and shaky all over on us. When we went to check his sugar levels, we found that the glucometer had a dead battery and we had no OJ. What a mess!! He ate some sugar wafer cookies and drank some gatorate and finally perked up to the point where we could all finally go back to bed.

On a happier note, the swingset is FINALLY 100% completely FINISHED!!! It looks wonderful and Nicholas is outside right now, finally feeling up to playing on it. He just LOVES it and just seeing the sheer joy on his face and the sound of his laughter while he is playing makes all the work and effort we put into constructing it all well worth it! We are also going to be doing a bit of work in Nicholas' big boy corner of the nursery so he can have his own special bed and area of the room. We found out yesterday that he has a love for surfboards that we never knew about! We found a bed-in-a-bag set for him that was a share more aqua than light blue and has flowers in the background and brightly colored surfboards all over it. We also found a sailboat pillow with the same colors at that store. At another store we found a surfboard pillow about as tall as he is that almost matches exactly and at Target, we found a wall hanging in the same colors with the same flowered background to match the set. It was like it was meant to be. This will tide him over until we can get Nathan into a big boy bed as well and make their room into a cowboy's paradise! He is SO excited and we will make sure to take pics when it is ready!

Guess that is all for now. Hope everyone is having a good 2006 so far! Take care and God bless!


Melody

Thursday, January 12, 2006 10:27 PM CST

Sorry this update has been so delayed. The boys have been very sick this week. Happy belated birthday, Uncle Gary!! We meant to update on your special day, but the boys have been too needy for us to do anything around here and computer problems have been troubling us as well this week. I hope you had a WONDERFUL day!!!

The boys came down sick Sunday night after a weekend of swingset assenbly and bowel dis-impaction...more dirty diapers in 3 days than I ever care to see again! The infamous swingset is almost fully assembled right now and only lacks the second bench to the picnic table and the trapeze bar and it will be totally complete. I took them both into the peds office Monday with bad coughs, fevers of 102, junkiness and stuffy/runny noses. Nathan also had fluid in his ears but no infection at that time. The dr told me to bring Nathan back on Wed if he was not better and to give Nicholas a rx abx Wed if he seemed to be showing no improvement as well. Mon night, Nicholas' fever went up to almost 104 and both boys started in with diarrhea. Tuesday found us cancelling therapy and staying inside in jammies with worsening diarrhea and lack of appetites (the only good coming from that is confirmation that Nathan is cleaned out...woohoo!!). Tues night Nathan stopped running fever and seemed to be a bit better, none to soon, either...or so we thought! Wed morning, they both showed some improvement and Nathan had no fever. He slept for about 75% of the day, so I thought he was sleeping it off and left him alone to rest. Last night, both boys had worsening in breathing and Nathan continued to decline today during the day. Nicholas is getting better a tiny bit each day. Both boys had Urology appts as well this morning, so we ventured out for those. Nathan's circumcision revision looks wonderful and he is being formally discharged for the time being. If he has trouble with urinating while potty training, we will need to take him back in to have the Hypospadius reevaluated. Nicholas will be needing a renal ultrasound to look for any abnormalities of the kidneys. ureters, and bladder to see if we can find out why he is unable to have bladder control. He currently urinates tiny amts all day long. This has been keeping him from having any success at potty training. When we got home, both boys went down for naps and that is when I noticed how much difficulty Nathan was having breathing. I finally gave in and called the peds office nurse's line after giving him an extra breathing treatment and still hearing him wheeze. She advised me to bring him in. After the ped listened to him, he suspected pneumonia in the lower left lobe of his lung and ordered a chest xray. The fluid he had in his ears also turned into bad double ear infections. He chose to give Nathan a Rocephin injection to get him a jump start of abx. We had the chest xray and the results, thankfully came back clear. They are still concerned with his breathing and lack of improvement and we are to give breathing treatments every 4 hrs around the clock tonight and we are to return tomorrow to see the dr again so he can check his ears and chest before the weekend. He will then decide if Nathan will need further meds and whether he needs more abx injections or can take oral abx instead. Nicholas will need a reeval tomorrow as well since he has had the same bug as his brother. Luckily, he has done a bit better so far, but far from well, as he is still pretty sick himself. Tomorrow's therapy make-ups have now been cancelled and we hope to have some healthy kiddos really soon. If you have a min, please say a prayer and/or remember them in your thoughts. All of us have had a really rough week and this illness has really taken a toll on them. Nathan looks so sick and only wants to sleep and be held and Nicholas has lost almost 1.5 lbs in a week and his appetite has been mostly gone. I am guessing it will be a while before we wil get back the appetite he had before all this. I just hope he is not set back too far with his eating. I will update more soon. Thanks for checking in on us. Take care everyone and God bless.


Melody

Friday, January 6, 2006 9:40 PM CST

We took the boys for their GI appts today. Nicholas' appt was pretty straight forward and easy. He had similar concerns to the Immuno about Nicholas' GI bugs and decided it was time to try Nicholas off the Prevacid and see if by allowing some acid back in to his system, we can help kill those bugs off and make it so he will not get sick. We are changing him over to Axid as well and seeing how things go. He is hoping to use this med to transition Nicholas OFF reflux meds for good! If he continues to have stomach issues with the med changes and acid back in, he will scope him at a later time. Weight was ok...still following his curve...and everything looked good. A really good appt for him! YAY!

Now for the shocker....Nathan is impacted! The GI noticed stool-witholding behavior while he was bouncing him on his lap (to check for behavior like this) and then noticed a solid wall of brown when he checked his bottom. He told us he needed to do a rectal exam since he was concerned about a polyp and when he went to check, he was totally backed up. That area seemed dilated and he was really surprised at the amt of poo in there. To quote him "his garage is about 4x bigger than his garage door" and he said he estimated that the poo was about 2.5-3 in across. I about died! Nathan has also lost weight and dropped off his growth curve and it is more than likely from decreased appetite from the impaction. We have been dealing with reflux/constipation issues since Nicholas was tiny! I almost cried as I felt so bad that it had gotten this bad and we had NO clue. We have felt like we are first time parents all over again with Nathan as he actually eats and has teething pain and does all these things that Nicholas NEVER did. I feel so ignorant so many times since we never had these experiences with Nicholas. But, this was something I felt as though I should have noticed or something, but we always were able to blame it on something else...teething, tiredness, not feeling well. And, to make me feel even worse, the GI told us that when you get backed up like this for long enough, it is possible for bacteria to build up to a level high enough for it to leach into the bloodstream and make you sick. Not in amounts big enough to show up on any blood cultures or tests, but enough to make you feel bad and he is wondering if this would have been the cause of Nathan's 5 days of high fever a few weeks back with no cause found for it. He also thinks that if we can get Nathan's issues downstairs under control, he will more than likely be able to wean off reflux meds. He is attributing most of the reflux we have seen lately to this impaction making the whole system back up. I was just horrified that it could have gotten this bad without us having a single clue and the more he talked about symptoms, the more it ALL made sense. All the leg straightening behavior we have seen with diaper changes, eating, trying to get him to sit, and playing have been withholding behavior. All the crying with feedings have been the gastric-colic reflex (sp?) causing him serious discomfort and making him cry as he wants to eat but feels like he can't. All the crying at night from a bellyache and not from teething. He has not wanted to even try sitting up for long since it puts pressure on his tummy and makes him feel bad. The GI feels that this is more than likely from his low muscle tone in the abdominal muscles and he has been inefficient in moving it from the start and once he started getting backed up, it made it even harder to move it and that is how this happened. He has started Nathan on Miralax and we are to do a clean out....prunes, warm water enemas, and loading doses of the miralax to help him go and get rid of it all. So far, when we got home, he has gone a huge poo that was the diameter of a golf ball and about 5 in long and when we did the first enema, he got rid of a bunch of pebbles. He is hoping for us to drop off the evening Prevacid dose when Nathan is cleaned out and doing better overall and then the morning dose after that if things continue to go well. I am feeling like gum on the bottom of a shoe right now. My poor baby! I just want all this poo out so he can feel better...no wonder he has been feeling so crummy lately. I was thinking about it and I am guessing we should cut back on the bananas, applesauce, and bread/cereals for a while, since they are on the BRAT diet, they may be contributing to the constipation. It is too bad so many meat dinners have applesauce in them. Anyways, that is about it for those appts.

On a brighter note, tomorrow the swingset goes up!! I know Nicholas will be super thrilled with it and I cannot wait to see his little face just light up with joy when he gets to play on it for the first time and realizes that it is ours to keep and it will be staying here at our house. He is going to be SO happy! I just hope that, with the number of adults we have here, we can all understand enough of the directions to get it all assembled correctly and finished tomorrow! Wish us luck!

Take care everyone and God bless you all!


Melody

Friday, January 6, 2006 0:17 AM CST

Nicholas' test results are back in already!!! They usually take a week to 10 days, so I was certainly not expecting to hear anything back this week. The drs office was about as shocked as I was!! Anyways, here they are....

IgA: 22 (up from 19) lab norm 24-121
IgG: 346 (down from 376) lab norm 533-1078
IgM: 16 (up from 13) lab norm 26-218
IgE: 5 (up from 2) *this one was in the normal range

So there you have it. Basically no change as his levels have been yo-yoing back and forth like this with no overall change in 18 mos. The last time was just the opposite...his IgA and IgM were down and IgG up, so who knows. I am kind of bummed...they keep telling us this is transient, but when will we start to see the levels trending up then? I was kind of thinking we would be seeing at least some improvement by now. The Immuno says that the changes are so small they are considered insignificant and unchanged. I am happy they are not worsening, but I was hoping for at least some improvement by now. Anyways, now we wait another 6 mos and see what happens then.

Doug finished inputting all our out of pocket med costs for the med deduction on income taxes earlier today and I nearly had a heart attack when I saw the total....$16,675.74. It is amazing to think we could have paid cash for a brand new car with money like that!!! I guess we should be expecting a nice chunk back from Uncle Sam this time to use to pay them off!! It was an expensive year between my 8 hospitalizations for Nathan's pg and the infection, Nathan's 4 days in the NICU and MRI, Nicholas' feeding clinic eval at Kennedy Krieger and his tube feeding supplies, and so on. Thank goodness I am not pg so maybe we can have a bit of a cheaper year this year!

On a more positive note, we heard today that Nathan gets to stay with his current PT...thank goodness! I was so worried we were going to be on our 3rd PT in as many months, but she took pity on our sweet Nathan and decided to figure out how he could be one of the 10% of our old therapist's kids she could keep (had to pass 90% of those kids over to the new PT). Luckily, they worked it out, so he is going to be able to stay with the therapist that has known him the past couple of mos and not having to get to know yet another PT. We will be seeing her next Tues.

Tomorrow both of the boys go to the GI, so we are making our usual trek out of town to San Antonio for the day. We are not going to be able to visit our friends this time though. We are disappointed, but we have my inlaws and brother in law coming on Sat to help us assemble the new swingset we got for the boys with our tax refund (a little early!). They are going to LOVE it! I hope it is not too hard to put together. We will see!

Guess that is all for right now. I will update with the GI appt and the swingset soon! Take care and God bless!


Melody

Tuesday, January 3, 2006 10:31 PM CST

HAPPY NEW YEAR!!!

Well, overall the Immuno appt went well. We went over his health for the past 6 mos and the dr was thrilled with his lack of sinus issues and ability to get over URI's on his own now. He was a bit concerned with the length of time (2-2.5 wks) to get over it without dr intervention, but was pleased overall with his ability to fight it off with the help of increased breathing treatments and Extendryl. He wrote us another rx for standby Extendryl for as needed use. The biggest concern he has right now is the number of GI bugs Nicholas has had since this summer. He is not happy to hear he is having issues elsewhere and wondered if maybe (even with the probiotics he takes) the Bactrim preventative he takes is not throwing off the gut flora and causing him to have increased susceptibility to these bugs. So, we are going to do a trial off the Bactrim and see what happens. This is a huge step and one that makes me really nervous, but one that will be very telling...to see how he will do without it and to see if his gut illness rate improves off of it. We will reevaluate at the end of Jan and see how he is doing and if he is ok, we will try another month off. He was also concerned with the possibility of him having an active case of Giardia, bacterial overgrowth, or some type of chronic gut inflammation causing the gut issues to flare up, so he has asked us to talk to the GI about a possible scope to see what is going on in there and possible testing/biopsies to also see if there is any cause for concern. He thought the visit we are making to Genetics with Nathan might be helpful for Nicholas as well and might help explain some things. He ordered Nicholas to have Ig Levels drawn, but not titers as he originally thought he would want. We got those drawn this afternoon and Nicholas was remarkably calm and brave. He said to me before we went in the treatment room "I not going to cry" and he didn't. He looked at me during the draw and did not even flinch with the stick. I was super proud of him and it was over SO fast! We see the GI this Friday, so it should be an interesting appt with him as well. We will hear from the immuno in a week or so with the test results and to let him know what the GI has planned, if anything, and we go back in 6 mos for a routine check and blood draw. All in all a very informative and easy appt.

Nicholas did SO well at yesterday's dental appt as well. He was wary of opening his mouth once they had him lay down on the table, but after we dangled a matchbox car as a reward for being cooperative in front of him, he was more than happy to open his mouth to anyone who wanted a look. He even let them polish his teeth for a few min as well. They did a quick job of it and were in and out, but that was a huge deal for him to allow them access to his mouth for that length of time. They loaded him up with goodies before he left...2 stickers AND a balloon, so they made his effort well worth his while! Talk about a proud few days!

This week will be one where we try to get things back to normal, although since we have a GI appt in San Antonio on Fri, that more than likely is going to take into next week once therapy starts back up also. No worries...besides dr appts and therapies, it is not like we have a whole lot else going on now!

Nathan, for some reason, is still having issues with congestion, stuffy runny green nose, and intermittant fever. We saw the ped briefly when Nicholas was in for his lab draw today and he did not seem too concerned, thankfully, but they did comment on how he looked...puffy eyes and not as well as he usually looks and I am hoping we are over this soon. He has been a bear lately from not feeling up to par and I am ready to have my sweet smiley baby back full time!

Guess that is about all for right now. We had a wonderful time visiting friends up in Trinity over New Year's Eve and Nicholas LOVED playing at their house, which is on several hundred acres as well as going to a New Year's Eve party later that night, where he was the karayoke king! He knocked everyone's socks off with a rousing rendition of Happy Birthday and Jingle Bells! That kid sure knows how to work the mike! He also had wowed the members of the band playing at our friend's house in Trinity as he played the drums better than your average 3 yr old and made his drummer daddy proud! Now, Doug is working to make sure Nicholas takes to the drums like he did. Guess I have pounding headaches to look forward to in my future! Ah, well. It could be worse I guess!

Hope everyone had a wonderful holiday and is looking forward to a wonderful 2006. Take care everyone and God bless!


Melody

Friday, December 30, 2005 2:21 AM CST

Sorry for the delay in updates...the holidays have had us so busy! I also just wanted to send out some very special birthday wishes to a very special godmother and friend...even though this update is not on your actual birthday, we all wanted you to know how much we love you!

Nathan had his 9 mo well check appt yesterday. He weighed in at 18 lbs 12 oz with a diaper on and that was the 25th %ile and he measured 27 3/4 in and was at the 50 %ile for height. He checked out really nicely and the ped was so excited to see him trying to sit up. He is pleased with the progress Nathan has made with the therapy he has been getting. He got a fingerstick to test for anemia (standard for this check up) and no vaccinations. He did really well and smiled for the dr and fussed just a bit with the stick. He is not wheezing anymore and the ped was pleased and told us to keep doing what we are doing, but he is still really congested and junky in the upper resp area. He is hoping Nathan will be over that soon. The drs office called this morning with the blood test results and they all came back normal, so he is doing really well!

Nicholas has been a total hoot since he has turned 3. He is so smart and you never know what will come out of his mouth next! He has had us fuming one minute and rolling on the floor with laughter the next. Sometimes, it is getting really hard to discipline him as he says something so funny, neither one of us can keep a straight face, no matter how hard we try. He was SO brave the other night. It was time to change out his feeding tube and he was bribed with a matchbox car and dinner out at a place of his choosing. He sure loved that idea and did not even so much as flinch when we changed it out. He sure enjoyed his dinner and choosing his car at the store afterwards.

Christmas was a wonderful day for us. The boys really enjoyed opening gifts and Nicholas was so happy with all his presents. He especially liked his watch and kitchen set from Santa and his wooden rocking horse (that I spent days staining myself in the few days leading up to Christmas day!) and Dora game from us. Nathan seemed to enjoy his first Christmas, although I think it was very overwhelming for him and he was soon overstimulated. Luckily for us, we had the chance to take it slow and easy here at home and it was pretty laid back at my parents' house as well. That helped him a lot. He is really enjoying all his new toys as well.

We have been enjoying our time without therapy as well. It is nice to not have to worry about who is coming when. We have quite a few dr appts coming up in the next 2 wks though. We have Nicholas' dentist and Immuno, and Nathan's Uroloist follow up, as well as both boys seeing the GI. Whew! We are sure going to be out a heck of a lot in copays this pay period!

Guess that is about all for now. We are all hanging in there and somehow have managed to keep our sanity intact throughout the past year. I am so looking forward to 2006 and hoping that this will be our year to get out from underneath this dark cloud of medical issues and come out into the sun again! Only one more day of 2005 and then we will see what the new year has in store for us. I will try to update the site with some new pics from the holidays as soon as I can.

Take care everyone and have a very happy New Year! God bless you all!!


Melody

Saturday, December 24, 2005 0:02 AM CST - Happy 9 month Birthday, Nathan! (yesterday)

Merry Christmas Eve! We are about to embark on the mountainous task of wrapping all the gifts for tomorrow! Wish us luck! I hope I live to tell the tale!

Nathan had to go into the peds today as the cough he has had since Sun night has migrated into his chest and he has been wheezing. He was dx with Bronchiolitis and most likely that was caused by the virus he has been fighting all week. They are suspecting it is RSV. So, now he is the proud new owner of Nicholas' old infant sized Aerochamber and he is getting Albuterol treatments every 4 hrs as needed. It is always something, isn't it? And Nicholas was not to be outdone! As soon as we got back into the exam room, Doug and I noticed his eye was all puffy, red, and kind of crusty. So, the ped looked at him too and gave us an rx to fill if it does not look better by tomorrow. Nathan seems to be feeling a bit better on the new meds, but we are to take him directly into the ER if we notice any breathing difficulty, retractions, or if he spikes a fever. Luckily, he also has his 9 mo well check next week, so the ped can follow up with him and make sure he is recovering well. I just hope he is feeling a bit perkier in time for his first Christmas.

This will be a busy few days for us here. Church both days and our own family Christmas along with getting together with my family for that Christmas celebration as well. Nicholas is finally understanding Santa a bit more and told me today that Santa was going to be bringing him "stuff". Boy is he going to LOVE the "stuff" that Santa brings! I just cannot WAIT to see his little face light up! That is what the magic of Christmas is all about...the innocent joy of a child!

I hope you ALL have a wonderful and blessed Christmas holiday and can spend it with family. Take care everyone and God bless each and every one of you! Merry Christmas to all and to all a goodnight!


Melody

Monday, December 19, 2005 10:26 PM CST - Happy Birthday Mom P!

What a week! Nathan has been feeling better for a while, but has developed a nasty sounding cough since late last week and today has had a nice yellowish drainage. I think we will be making a trip to the ped this week...probably tomorrow. Ugh!

Last week, we had PT on Mon, OT on Tues, and DT on Wed. The PT is now thinking of bumping up Nathan to once a week as well, but she has to wait and see if she is going to be dismissing someone first so she will have room in her schedule for that many time slots. All the therapists had a treat as I had made homemade banana and pumpkin breads, so they each got a whole loaf and a card and pics of the boys. We will see them again after Christmas.

We also went to the library on Wed for Nicholas and Thurs for Nathan. We met up with friends at the Thurs storytime and went for lunch afterwards. Nicholas somehow got his fingers smashed in the heavy door there at the restaurant and I swear I thought at least one was broken. My friend was going to the ped after our lunch date, so we ALL headed over there and Nicholas got in as well. We had to see the ped we stopped seeing a while back and that was really awkward, but it was a fast appt and thankfully, nothing was broken....just a lot of soft tissue damage. I watched my friend's 3 yr old for her while her baby had his well check and then we headed out to Starbucks afterwards. It was a nice afternoon.

Saturday we went to celebrate Doug's mom's birthday and Christmas with them. It was fun and Nicholas and Nathan left there with some pretty nice things as well (as did all of us!)!

Sunday was church and and going to pick up the boys' swingset. We had lunch with Doug's parents as well and then had our Christmas with the boys' godmother after going out to dinner with her. It was a nice, but REALLY busy weekend!

Today was a really stressful morning and then a nicer afternoon. We went to my parent's house and my sister came over. We finished my grandma's gift and went to mail it off. The boys all played together and all 4 of them actually napped at the same time! What a miracle! We enjoyed it and had a great time!

Guess that is all for right now. Sorry the updates have been few and far between, but with the holidays so close, we have been super busy. I am hoping to be back to the normal posting routine after the first of the year when things settle down. Take care everyone and God bless!!


Melody

Tuesday, December 13, 2005 10:01 PM CST

We have had a really busy past few days. Nathan has been steadily improving health-wise and he has been fever free since late Thursday. He now has a really bad mouth ulcer on the connective tissue under his tongue (frenulum) and it has been causing him quite a bit of pain. The peds office thinks it is viral and, given the viral illness he just had, it could very likely be related to that.

This weekend, now that the baby is feeling better, we hit the mall and stores hard, trying to make up for lost Christmas shopping time. We got as much done as we could and will have to wait on the next paycheck for the remainder of the gifts. We are close now, though. We also made it to church and went to a birthday party on Sunday afternoon for one of Nicholas' little friends. It was so nice to just sit around and visit and relax while the kids played.

Yesterday we had PT and then today we had OT. Nathan did really well both times...which is great seeing as how he is still regaining his strength from being sick last week. We will be approved for once a week PT tomorrow and the OT said that if she has space, she will try to work Nathan into once a week OT as well. He is going to be one popular kiddo really soon!

My sister came today as well and we worked on the scrapbooks we are making for my grandma for her Christmas present. I know she will love it and we can keep sending her pages for it. She loves pics and showing off her kids, grandkids, and now great-grandkids. This will be right up her alley! I am hoping to have the pages complete within the next couple of days.

Take care everyone and God bless! Thanks for coming to check in on us!


Melody

Thursday, December 8, 2005 9:48 AM CST

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Ugh...we are back. We were stuck at the ER for over 12 hrs..8 hrs to get a room and then another 1.5 hrs to see the dr. What a night to have to go to the ER. Anyways, at some point when we were there, the high fever finally broke...I am hoping for good. He had a chest xray and it was clear. He has a nasty cough that we are to keep a close eye on and make sure he stays hydrated since he is kind of borderline dehydrated. We finally got home at about 5 am this morning. I wish I would have had an update to call someone with, but it was so late by the time we actually got a room, so I did not call anyone due to the lateness of the hour. Needless to say, we are all pretty tired and worn out. Nathan is sleeping right now, which is a good thing after crying or fussing for about 7 of the hours we were there last night. I think Doug and I must have worn a groove in the hallways last night! Anyways, thx so much for the good thoughts and prayers. We sure appreciated them. I am hopeful that he is finally out of the woods...104+ fevers since Sat has been NO fun for any of us!


Melody

Monday, December 5, 2005 10:39 PM CST

UPDATE It is 2:15 on Wed afternoon and Nathan has still been running 104 fevers today...we are on our way to TCH to be seen at the ER. Please pray that they will figure out what is wrong with him. We are very scared...

______________________________________________________________

Ugh, ugh, ugh. I am SO sorry that it has been so long for me to update this. Things have not been so great the past 3 days.

Saturday we were to go to Doug's work Christmas party. I had been looking forward to this event for WEEKS as we have never had a really nice fancy event to go to on a "date" for years. It was several years even before Nicholas came along. We NEVER go out anymore just the two of us as our kids have been our lives and our focus and we wouldn't have it any other way! We never planned any events like this for the sole reason of the worry of "what if something happened while we were out?" Many of our friends and family have been on our cases to go out by ourselves more and so we decided to go to this one. The doubt lingered in the back of our minds, though. We woke on Sat morning with Nathan running a 100.7 fever. We went into the Sat clinic at the peds office and were dx with a URI as there were NO other symptoms besides an occasional cough and sent home with a warning to be on the lookout for anything changing. He slept most of the rest of the day and we pasked up the car to go to the party (wich was on the other side of town at a really nice hotel that we had a paid room waiting for us!). I went to change his diaper and he was burning up. I took his temp and it was 104.5! We immediately called the peds office and were instructed by their nurse's line to put him in the bath. We did and the fever came down to 101.3....not bad. They told us to give Motrin every 6 hrs around the clock along with Tylenol every 4 to control the fevers and not to worry...he would be fine. We were devestated and saw visions of our night out going down the drain...I had a new dress that I got altered, new shoes, a pedicure, a new haircut, etc... I was in tears! Luckily, we have a gift in the godmother we chose for the boys. She offered to go with us to the hotel to stay with us and babysit for us there. She told us we were only a phone call away and she would take his temp, dose his meds and all so we could go. If nothing else, she said, we could go to dinner and go back home after that if need be. We decided to try it and made it there in time to check in and be ready and there before dinner. We went up and down to check on them and they were fine and Doug and I had a wonderful time out together for the first time in years. We SO needed that.

The next morning, we grabbed breakfast and headed for home later on. Nathan was still doing ok with fevers on the meds.

Come this morning, he was still hanging in there, but still running fevers of 100-101.5 on the meds and we got to the peds office as a walk in when they opened. We saw the ped and he ordered the "works"....flu nasal swab, urine catheter for urinalysis, blood culture, and CBC. Then, it was off for our Neuro appt. Well, most of the appt was spent trying to track down our ped because he was running a temp of 101.7 under the arm (and while on BOTH Tylenol and Motrin) in her office and she was about ready to send us for a spinal tap...but just then she was able to reach our ped (who was on lunch at the time) and he talked her into waiting until the bloodwork and urine testing was back before going any further.

She has decided that Nathan's concerns are now more indicative of something more going on than just motor delays because he now has delays in speech and vision issues to boot and, although he continues to progress, he continues to fall further and further behind in gross and especially, fine motor. She decided she wanted to send him to see Genetics and then we mentioned that our GI wanted us to ask her about the possibility of a metabolic disorder or something going on because they have so many similarities. She asked what kind of similarities and as we explained each one she kept saying Hmmm...then a bit later somehow Nicholas' immune deficiency came up and she said "Yeah they really BOTH need to see Genetics!" and she told us to just take Nicholas with us to Nathan's appt and more than likely they would end up testing him as well for whatever they would be testing Nathan for. I am not really sure what I think of today, especially since I am still really worried about Nathan and his fevers, so I will have to process the appt later on. They made the appt for us to see Genetics and the wait is about 3 mos...our appt is on March, but they advised us to call and get on the cancellation list (which we would have anyway) to see if there was any way we could get in sooner.

On a positive note, she was thrilled at his attempts at sitting and said that as long as he is making progress, no matter how small, it is very encouraging. I was glad to hear that. I needed some happier news! She said that right now, we are doing the most important thing for him that we can do right now, which is to continue with his therapy and she was really glad to hear they are bumping him up to 1x/wk PT. All in all, not too bad of an appt.

Finally this afternoon, I heard back from the peds office. The flu swab came back negative, but his white cell count is elevated. We had to go right into the office again and get an injection of Rocephin (broad spectrum abx) to cover him until the preliminary cultures are in tomorrow. We are to wait to give him his fever reducer meds in the morning to see if he is still running fever and if so, we are to take him back to the office for a second injection to cover him until we get the final culture reports in 48 hrs. He has been a very sick little boy and I feel so bad for going to the party....although I am not sure what else could have been done differently had he been with us instead of his godmother. She did a fabulous job caring for them both, so I know things would not have changed much, if at all. And, we checked in with them all the time, too! I still feel the guilt nonetheless.

Please pray for him to be able to fight this bug off soon. He is feeling really poorly and had such terror in his eyes after all the procedures and pain he had to endure today. My heart is broken for him every time I look into his sweet precious face. I will update when we know more tomorrow. Take care and God bless!


Melody

Thursday, December 1, 2005 10:58 PM CST

Well, what a week this has been! Tuesday was a pretty laid back day. We stuck around the house and hung out. Nathan has been teething really badly and cried about 30 min out of every hour all day it seemed. He had a hard time sleeping and he nap was almost non-existant. We were beat by bedtime!

Wednesday we went to the storytime at the library. We had fun and headed home to hang out and eat after that. Nathan had DT that afternoon, so I kept him up so I would not have to wake him up and risk him being craby when she arrived...only she did NOT show. Turns out, when I finally heard from her over 1.5 hrs later after calling and looking for her, that she just totally missed his appt. It was an honest mistake, but by this time, Nathan was beside himself with exhaustion, and napped for only 20 min before he was up and bawling again and he afternoon was pretty much shot. None of us were happy.

Today was much better. We went to visit my sister and my parents came too. We played outside with the boys and then ate. Nathan went down and slept for 3 hrs! Meanwhile, the older boys napped and my parents babysat for us while we went to get pedicures. I finally used my gift cert my sister gave me LAST Christmas. Doug has his work Christmas party Sat and I figured I would do up my toes in style. They look great and I got a new pr of strappy shoes this evening to wear with my dress so I can go without hose and show off my toe art. We got the boys pics back tonight and they turned out pretty cute for having to settle for a pic so we would not have to go back AGAIN!

Tomorrow, I am meeting my sis at the mall and we are hitting the stores for some serious shopping and trying to get our gift list crossed off. I am way behind! I hope I find some good sales!

I hope all are well. Take care everyone and God bless!


Melody

Monday, November 28, 2005 11:39 PM CST - Happy Birthday Samantha!!

Happy early birthday James, if we do not update the site tomorrow!

We had a GREAT therapy session with the PT today!! She is thrilled that Nathan is now trying to SIT!!! She is looking forward to coming out to see him once a week now and she hopes that if we can hit the therapy hard while he is making progress like this that it will help him even more. YAY Nathan!! Here is a pic of him trying to sit...



We took the boys for a walk tonight to look at the Christmas lights in our neighborhood like we do every year at this time. It was nice to go out on the cold (it was in the 40's, which for us is chilly!) and see the pretty displays. Here are a couple of pics of the boys in our front yard after our walk with our snowman...





This weekend was fun. Saturday we slept in and missed riding lessons due to the rain and my parents watched the boys in the afternoon while Doug and I went to see Harry Potter. It was great and nice to have a short amount of adult time for a change. The boys loved being with my parents, too. I got my hair cut afterwards and we met the boys' godmother for dinner after that.

Sunday we made it to church (yes, you read that right...2 wks in a row!!!) and then went to the Galleria for some holiday shopping after that. The church had an activity for the kids that night where you could listen to a live country music band, see Santa and some other costumed characters, and snack on frito pie with chili, cookies, hot chocolate or juice, and toast marshmallows to make real s'mores. I did not remember how GOOD real s'mores were, it has been SO long. YUM! It was a really fun night with beautiful weather to boot.

Guess that is all for us here lately. Nothing big this week...just DT on Wed. I am glad to have a quiet week as the last 2 have been SO crazy! I have a special prayer request...we have wonderful friends up in MN that have had a really rough past week. It would mean a lot to me if those of you who pray would remember them for us this week. They are special people to us and have had a lot on their plate as of late to deal with and I would appreciate any prayers you can spare for them. Take care everyone and God bless!


Melody

Friday, November 25, 2005 10:05 PM CST

Happy Thanksgiving!! Hope everyone had a wonderful holiday!!! Sorry for the lack of updates....between my test this week and going to visit the relatives for the holidays, things have been very hectic to say the least!

Monday we went to visit my sister. That went really well...we had a play group with another friend and ate a nice lunch together. The kids played outside and it was a really enjoyable day.

Tuesday, my sister came here for a visit and we met my parents for a bit of shopping and came out of the store with my parents buying each of us a Christmas gift, my sister buying one of her boys a gift, and me buying a dress for Doug's holiday party at work next weekend. Needless to say it was a very productive trip for all at the store! We then took the boys for a picnic lunch at the park and they played until they about dropped! They had a blast and we came back here and they crashed for a nap.

Wednesday, I had my lovely scope. I had to fast from midnight on even though my test was not until noon! I was pigging out at 11:30 the night before!! My parents watched the boys for us so Doug could take me and bring me home as I was not allowed to drive. The test went really smoothly...he saw some areas of Esophagitis, but nothing too bad, so it appears that the meds are doing their job, thank goodness. I was really sedated and sleepy most of the rest of the day and tried my best to sleep it all off. We went and picked up the boys and loaded up the car and headed out to Doug's parents's house for Thanksgiving. I did not really eat anything until dinner that night and I was so famished, I had 2 helpings!! I am just so glad and relieved to have all that behind me!

Thanksgiving was really nice. We were together with all Doug's family and Nicholas had a really fun time playing with all his cousins. We all had a blast playing with the new pool table at their house and also using their new hot tub. Wed night was rough as Nathan decided he HAD to get his first tooth before Thanksgiving, so he was up half the night screaming from teething pain. The next night was rough as well since one of our nephews had a hard night as well and was up several times crying. Luckily we were next door and were able to get up to calm him. We left this morning and are all looking forward to sleeping in familiar beds tonight! I just hope we can sleep!!!

Guess that is about all for us. Doug is trying to get the lights put up right now and the yard decorations put out. So far, it is looking pretty festive! Hope all are doing well and had a really enjoyable holiday! Take care and God bless! We are SO thankful for EVERYONE who comes here to read up on our special little sweeties!


Melody

Sunday, November 20, 2005 10:41 PM CST

Well, the GI appts went pretty well.

Nathan is pretty straightforward in regards to his reflux. He has gained quite a bit of weight since starting solids and jumped from the 25th to the 50th %ile in weight. He is now roughly the size Nicholas was from 11-14 mos and he is not quite 8 mos old yet! The GI called him "rotund" and thinks we may need to cut back a little on the solids as he is going to struggle more with sitting/crawling, etc the heavier he is. He told Nathan that he needed to teach Nicholas to eat like he does!! His reflux has been so horrible lately due to him being sniffly and drooling/teething so bad. The GI decided to change over his rx from Zantac to Axid to see if that will help. I think he will like the change as the Axid is grape flavored and not nasty like the Zantac and we will leave all his other meds the same.

Nicholas has lost weight, which we were expecting with the tube-weaning, but he was at a lower weight than he was 2 mos ago when we were there before, so it is a pretty sizable chunk. He was not happy and opted to go back up on the tube feeds and take him off the Periactin and restart him after a break to hopefully make the med effective again. We will resume the tube weaning after the break as Nicholas does not eat at all without it. Nicholas was full of stool and had to have a rectal exam. This is the first time he has been backed up like this and the tube weaning is taking away so much of his liquid intake and he is not making it up by drinking during the day. We need to tube extra water and go back up on his Miralax dose again. We also talked about Nicholas having extreme trouble with potty training and I wondered if it could be the stool causing the trouble with his bladder. He was not backed up that much, but the GI was concerned that maybe he is not emptying his bladder and just leaks urine all the time to compensate for the new urine coming from the kidneys, so we need to take him into the urologist and see what he thinks.

He also remarked on how many of the boys' issues they have in common (although they vary in severity) and he wants us to talk the the neuro at Nathan's next appt about metabolic and mito disorders (he said he was pretty sure it would NOT be mito though) and see what she thinks.

After that, we went to the zoo there and then to have dinner and hang out with our friends there. It was a good time!

Yesterday, we went to riding lessons after sleeping in late, ran some errands, and almost forgot about the rescheduled portrait appt for the boys. They were running way behind, so we did not miss it and got a pic that was so-so. We will take it just to avoid having to go back AGAIN.

This morning, we woke and actually made it to church!!! It was nice and we got to have a nice lunch with my parents afterwards. Then, we had a few places to check out before heading home and Doug and I ended up having our Christmas to each other a little early this year! We bought a new desktop CPU today. This laptop has been iffy lately and the desktop we had was SO OLD. I think like 7-8 yrs old... It is a dinosaur and has gotten to be so unreliable...it will boot when you turn it on and then cut off and reboot again and again. If you actually get it started and it stays on, you cannot get internet on it now since the new dsl modem is too advanced and they are no longer compatible. We really needed to have at least ONE reliable machine around here, so we decided that we would buy one as our gift to each other this year. Since neither of us like the stores after Thanksgiving, we decided to browse today and found THE DEAL. A $649 machine for $449 and it has a 200gb hard drive! It also has a really high end processer, 512mb of RAM, and card slots for memory sticks right in the front. I think we will be set for a while now! I am SO excited! I cannot wait until the holiday weekend when we have time to set it up!

Guess that is about all for us here. Hope all are well. Take care and God bless!


Melody

Thursday, November 17, 2005 11:17 PM CST

Well, we sure had a LONG day today. A SUPER HUGE THANK YOU to my parents for going with me today and to my dad for driving us home when I had a pounding stress headache from the appts.

Ok...so I finally bit it and made the appt to take myself into the GI after much nagging from my family. I knew also that I had already met my out of pocket max for this year and figured might as well while it would be cheaper. It did not go quite like I had planned...

This GI was the one our ped GI took his wife to while they lived here, so I knew he must be pretty good for our ped GI to trust his wife's care to him. He took my history and I got the distinct feeling that he was thinking I should have been in there long before now. He looked totally surprised when he found out I had been treated for this for 3.5 yrs with no testing done. I had to get an exam and he is concerned that I might have a possible hernia from the pg ( which the OB and my GP were suspecting as well) and I also had to get a rectal exam. This was just a tad short of being as bad as a pelvic exam, but not by much at all. He has me so far scheduled for a scope with Versed next Wed and will take pics and biopsies and, depending on what that shows, he also mentioned possible colonoscopy, sigmoidoscopy, and some test to check my gallbladder for gallstones as they go hand in hand with reflux, apparently. Now I am feeling really guilty for not going in sooner. Guess that is about all for my appt, so on to Nathan's...

I want to start on a positive note by bragging on my little man. He was a total and complete ANGEL all day today and especially during his really long eye appt. He saw 3 residents and the opthalmologist today and ALL of them commented on how he had to be one of the easiest babies that they had ever tested...he sat so still in my lap and the only problem was that he just wanted to reach out and hold the little lenses they were using to test his vision. He did not even cry when they used all the eye drops in his eyes.

Turns out Nathan is nearsighted. Apparently all babies are far sighted unless they are preemies or have something else going on. In looking through his files on the computer, she questioned me pretty extensively about the neuro issues and the MRI results and said that those plus the Hypotonia and the vision issue raises a red flag for her and makes her wonder if there is a possibility of a "syndrome" here. She was going to send a detailed report to the neuro for her to review before we see her for our appt on the 5th. He is measuring 2 diopters right now and she said the general rule for babies this age is not to use glasses until they hit 5 diopters, but she said given my history of vision change (my eyes are currently 12 diopters, which is pretty significant) she is pretty sure he will be in glasses within 2 yrs or less. It explains all the groping he is doing when reaching for toys and all. There was no issue at all with the lazy eye we went in originally to be evaluated for. The eye-crossing the therapists thought he had is an optical illusion created by his nose and is called pseudo-strabismus and it is common in babies and she sees kids all the time because of this. Fortunately, we were referred for this and found out another issue because of it. She wants to follow him closely and we will be seeing her again next spring to reevaluate his eyes.

I am not feeling really good about myself at all after both our appts today. Basically the GI told me that the boys have reflux because of me passing it on to them and the eye dr told me that Nathan most likely will have the same really bad vision that I do because I have it and it went bad quickly when I was at a young age. Not very good to boost your self esteem when you are already feeling really guilty. I feel like I am a genetic disaster. Ugh... I know there was nothing I could do about any of it, but it still hurts all the same to know that it is because of me that they suffer the pain of reflux and Nathan will know the sting of hearing the kids teasing him about his "coke bottle glasses" just like I dealt with all my childhood. My poor babies....

Anyways, enough of that. I am ready to leave these appts from today and focus my energy to the GI appts both boys have tomorrow. We will be headed out to San Antonio for the day, so I will not be updating tomorrow night. I will let everyone know how things went this weekend. Thanks to everyone who checks up on my sweeties and our families. It really means a lot to us to know you were here and to read your entries in our guestbook. Take care everyone and God bless!


Melody

Tuesday, November 15, 2005 11:03 PM CST

Well, Nicholas did better yesterday and he kept down everything he ate. So far, so good, Today, he had some bad gagging at lunch and laid around the rest of the day, so we are taking it slow now and trying not to overdo.

He went for his 3 yr well check today and was 35.5 in and the 5th %ile for height and 27 lbs 13 oz and the 10th %ile for weight. He is doing really well overall and the ped was so happy with that! He got one shot, but only screamed once and was ok after that. I had the ped check Nathan's ears while we were there and there was still fluid, but no infection, so it looks like he is on the mend.

Nathan had PT with the new/interim therapist yesterday and she agreed that he needed to be bumped up to once a week for PT. I was glad and sad to hear that. Glad that they want him to have more intensive therapy to help him improve faster, but sad that he obviously is not making the progress that everybody wants him to be making and he needs the extra time. I am just glad we have good therapists that care and want him to do well.

We were going to see my sister tomorrow, but decided that with the gagging today, it might be better to wait and see them early next week instead. So, we will be sticking close to home instead and playing it safe. It is nice and cool now though, as the cold front came through today and cooled everything off...YAY!! 60's instead of record breaking 90's. I am ready to put the shorts away for good now!!

Guess that is about all for now. Thanks for checking in on us. Hope all are well! Take care and God bless!!


Melody

Sunday, November 13, 2005 9:40 PM CST

What a night we had last night!! Poor Nicholas woke up at around 4 am and was retching horribly! I heard him struggling on the baby monitor and went in to see what was going on. His feed had just ended and he was laying there like a rag doll, with a huge swollen and bloated belly and retching (like dry heaving) uncontrollably. I unhooked him and got him onto the floor and hooked him up to the venting tube and he was doubled over and I could hear all this air in his belly gurgling around, but could not get it out. After about 30-40 min like this, with Nicholas heaving every 5-10 min, I finally went and woke up Doug and had him come in so we could decide what to do. Nicholas was sweaty, pale, and limp and was so exhausted from the retching, his eyes were rolling and he was falling asleep between retching episodes. We debated calling the ped (who is local) and the GI (who has tube knowledge) and decided to call the GI on call around 6 am. Thank goodness it was our GI on call and he immediately was concerned. He told us clear liquids all day, leave him hooked up to the venting tube, and if we could not get the retching under control, we were to take him to the ER at Texas Children's for an abdominal xray. Luckily, after giving him some gas drops and waiting it out, he finaly stopped retching about 7:30. 3.5 hrs of straight retching...our poor baby was worn out and passed out in our bed sleeping between us, hooked up to his venting tube and a contraption with a lid to catch the overflow from the tube.

He did pretty well all day with popsicles and water and had diarrhea all day long. He slept a lot and was pretty quiet. He will be hooked up to a pedialyte drip tonight and if he has no more retching overnight, he can go onto the BRAT (bananas, rice, applesauce, tea/toast) diet tomorrow and try 50/50 diluted feeds tomorrow night. I sure hope this does not set us back too much weight wise with the tube-weaning. It figures that something like this would happen right smack in the middle of the weaning process!

Yesterday was a good day though. We woke up and headed out to the pasture for riding lessons. After that, we headed on out to Jillian's for Doug's company's Children's Christmas party. They had a build your own burger/chicken sandwich bar, salads, fruit trays, fries, and a build your own ice cream sundae bar as well. We ate and then Nicholas got to play his very first bowling game! He did pretty well, too! This place had an alley that you could program who needed bumpers and who did not and they came up automatically for Nicholas and stayed down for us. He almost beat the pants off of me!! Then, we each had a $20 game card for the game room downstairs and we played and played. We earned 1,206 tickets and walked out of there with some nifty prizes!

Then, we were off to another birthday party for the child of some college friends of ours. We had such a good time and were invited to stay after the party for sandwiches and some dominoes....42 to be exact! Boy, we sure did have fun! The kids had such a great time playing together and got along so well and we had free babysitting as they had parents staying with them from out of state for the party. It was late, so we left to come home and soon after we all went to bed was when all the "fun" started.

Today was more laid back. We had planned on going to church and running a few errands, but with Nicholas sick and all of us beat from the long, rough night, we chose to stick close to home and ALL had a pajama day today. We had a pretty decent day for some tired parents, a sick little boy, and a smiley baby. I sure hope tonight goes more smoothly than last night!

Take care everyone! God bless you all!!


Melody

Friday, November 11, 2005 12:34 AM CST - HAPPY 3rd BIRTHDAY, NICHOLAS!!!

I am just amazed as I sit here and write this, to look at my now 3 year old and remember how much we have been through the past 3 yrs with him and to appreciate the wonderful person he is growing into. He amazes me every day and juat has a way about him that could make you smile even during the worst of times.

He is such a joy and I cannot imagine what my life used to be like before he arrived. At this time in 2002, I was in labor and joyfully anticipating his birth. I was surrounded by friends and family and I remember looking into his tiny face for the first time and feeling my heart bursting and knowing that my life would never be the same. And, I was right. I have learned so much and grown more than I ever have in the previous 29 years of life. He makes me strive to be the best person I can be for him and for myself.

Thank you to everyone who has been such a strong support in his life and in our lives with him. Take care and God bless!


Melody


For Nicholas....I love you so much that there are no words to adequately describe it. You are my joy, my heart, and my world! I am so very grateful that I was blessed to be chosen as your mother. I love you with my everything, my sweet and precious boy!!! Happy, happy birthday!!!


Mama

Tuesday, November 8, 2005 11:50 PM CST

Ok...I have to apologize....with all the frustration about the feeding clinic appt yesterday, I failed to report about Nathan's PT therapy. We found out from her that she is in fact leaving and yesterday was her last day. She is making sure we get one of the better PT's and will request for them to block him out for once weekly PT sessions now instead of 2x/mo. The concern about his vision is increasing as he seems to be groping a lot when he is reaching...a sign he is not seeing well. He is also throwing his head back and forth a lot and the therapist thought it may be his way of trying to clear his vision so he can see better. She worked with him wearing his Hip Helpers and that went well.

Nathan had OT today. Thankfully, when I asked her, she assured me she was not leaving anytime soon! She worked with Nathan and also used his Hip Helpers. He is getting tired of being handled from all the therapy, poor baby. She also noted concern over his vision. Luckily, we see the Developmental Opthalmologist at TCH on Nov 17. It cannot come fast enough!

The GI called this morning and Doug's phone at work was not working properly so he could not put us on a conference call and I did not get to speak to him, which was frustrating since I had several questions I had wanted to ask. He talked pretty extensively with Doug about it about it and he thinks we should at least try dropping him back to 1/2 and see what happens. He said we will never know if he can do it without trying and we have been working to beef up his fat reserve for something like this anyway. I can see his point. He did say however, that 4-5 lbs was out of the question and way too much to lose. He was ok with 2 and said we would have to see how things are going....and that maybe 3 might be ok. No more than that. I was really relieved to hear that. He is also going to call up someone over there and talk to them directly to make sure everyone is on the same page with having realistic expectations. We weighed Nicholas this morning and I was saddened to see he lost 5 oz this week...and we just dropped him back 1 hr last Fri. This makes me really uncomfortable with cutting back 3 more, but I trust the GI and I am ok with the limits he has set. I am scared to death trying this, but I trust the GI and know he would never let Nicholas' health be put in jeopardy. We are going to reevaluate after 1 week of the lower feeds and see how things stand with the eating and the weight issue.

Please, somebody tell me what we are doing is ok.... I am trying so hard to be optimistic and not worry about weight loss, but after fighting so hard for every oz, I am so scared to lose so much of the safety net of tube feeds and fat reserve. This whole thing makes me feel kind of like I am knowingly starving him. I know that is not really it, but taking his food away knowing he will most likely lose weight makes me feel sick to my stomach with guilt and fear. We have worked so hard to get to this day and now I am not so sure how I feel about it.

I will have to update about our evening at the photo studio tonight later as I am tired and this is already long. If you missed the bday party pics, please check out yesterday's entry in the Journal History. The situation I mentioned before is still there and is now worse. We thought it might be resolved quickly, but now it looks like it may drag out for a year or more. I am not happy, but have no choice. Please think of us if you get a chance. Take care and God bless!


Melody

Monday, November 7, 2005 9:11 PM CST

Well, to say I am disappointed would be an understatement. Just be forewarned....this is going to be long. Here is how it went…

We got there 30 min early and Nicholas was complaining about being hungry while we were waiting, but we could not feed him as we had to do it with them watching. They were running about 40 min late, so Nicholas was really getting antsy by the time they were finally ready for us. They take us back into this room with several armchairs, a couch, high chair, kid sized table/chairs, and adult table/chairs. This table had a lovely hole the size of a basketball cut out of the middle. They told us to sit wherever we wanted and they would watch us through this 2 way mirror and call us on the phone in the room if they needed us to do something. So, they leave and we asked Nicholas where he wanted to sit. I gave him the choice as I did not want a struggle about it later. He chose the little table, then decided he would rather sit at the big table (and try to throw everything through that hole!). I got out the food choices I had brought (they told me to bring more than one) and let him pick either applesauce or cereal/milk. He chose cereal and I got it ready. The whining started before the first bite and he was all over the chair…in it, on it, sliding off it, sticking out of it, backwards in it, etc. I finally got him to take a few bites…some he fed himself, others he ate with my help. He continued to fuss and whine and dh pulled up a chair and started hovering. Nicholas was confused since he now had both of us talking to him and I had to ask dh to either take over or let me do it as Nicholas was playing us…crying for one, then crying for the other. Finally he asked to have some applesauce and I gave him some and he ate one bite. Then, they came back in.

We first talked to the dietician, who gave us some recommendations… First, she wanted us to have Nicholas start drinking milk. Um…why would we be on overnight feed if he would drink milk/formula by mouth? If he would drink it, believe me, we would be going that route instead of this one! Then she was questioning why we were not using Nutren…well, it made him bloat up like a balloon. Did we try Pediasure? Since it is basically the same as Nutren, we didn’t for the fear of him bloating with this one. Soy milk? Tried it and it gave him diarrhea. Compleat (blenderized diet)? Gave him diarrhea and cramping. Rice milk? Couldn’t get him to drink enough to meet caloric needs. So she decides we need to leave his formula alone. At this point, I was thinking, why would we be here if we had not tried everything else first? She then wanted him to drop off ½ of his overnight feeds. I was not so sure about this, but I am open-minded and will try anything. So, I asked her, knowing he would most likely lose weight at first, how much can he lose before we worry about it? She told me she did not think he would lose much, if any, weight, but she thought it would be ok for him at just 28 lbs to lose 4 lbs and probably 5 before she would worry. 5 lbs??? That is about 1/5 of his body weight!! Then I started feeling uneasy about this...and also wondering what our GI would think of this. It has taken forever to get every oz on him and I was not sure losing that much would be ok, but being open minded, I listened on. Then after 1-2 wks, when his weight is stable, we drop the other ½ of the feed. Just like that. After only 2 wks! I asked her if she thought his weight would be stable after only 2 wks and she looked at me like “of course it will, what a stupid thing to ask”! At this point she leaves.

Now, we are left with the psychologists (an intern and a resident only) to hear their recommendations. The first thing they said was “You seem to be the type of parents who like to give their children choices about everything”. I was not really sure what they meant by this, so I asked and they said, you have him a choice of where to sit and what to eat. They suggested that we try to feed him at the same place for all meals and snacks. Well, had we been at HOME, this would not have been an issue. He sits at the same table in the same chair for every meal. What was I supposed to do when they gave us all these choices in an unfamiliar room? They also told us to bring a variety of foods that he would eat so that there would be something he would eat when they went to watch him. Why else would I have had so many things? I was not sure why choice would have been a bad thing anyway…I like for Nicholas to have a bit of control and independence, so I let him chose from 2 options. Apparently this is not always a good idea. They then suggested that we not allow the meal to last longer than 20 min and end on a good note, meaning when he starts fussing, he is done. Well, my intelligent child is going to figure out pretty quickly that all he has to do is fuss and he is done, even if it is only after 1 min and not 19. How is that going to help him eat more? Their next suggestion was to make sure that we allow 12 exposures of the same food before we move on to a new food. I asked them to clarify and their answer was that we needed to serve the same thing for, say, dinner 12 times before serving something new. Tater tot casserole for 12 nights straight! When I asked about this, they said that WE did not have to do that, but Nicholas should. So we could have whatever, but he needed to have the same thing for 12 nights. Well, my intelligent son is going to see us having something else and want what we are having, not the thing he has eaten every night for the past 10 nights! How is that going to work?? Finally, they suggested that we ignore the negative behaviors and only respond to the positive ones (meaning ones related to eating). We do that already, but the situation was not the norm for us and I really wanted them to see him actually eating so they could get the gist of the mechanical issues he is having (chewing, gagging, swallowing, choking, jaw/muscle weakness), so I was pushing through those instead of ignoring them like I usually do. So, those were their suggestions and we are to “call back in a few weeks and let us know how things are going” and they will decide if we need a follow up or not.

Oh, did I mention that the OT who was supposed to be there (and was the main reason we were going to this eval) had “something come up at the last minute” and could not be there? So, as of right now, there is NO plan to address any of his mechanical issues. I made sure they knew he had gagged and they acknowledged that they had heard and seen it, but it was not documented in the observation at all. They told us they if, when we call back, he is still having problems, we can come back in and do another feeding demonstration and the OT can watch this time. So, we were sent home with these recommendations and will continue to play Russian Roulette with the choking and gagging. Before we left, I made sure I told the intern that we would be consulting with the GI about these recommendations and seeing what he thought about them before implementing any of them as I did not want to undermine anything he was doing or make him feel as if we were going behind his back with anything. We are awaiting his call right now about it.

I am still trying to process it all after waiting so long for this and figuring out how I feel about all of it. I am also so tired of watching Nicholas struggle for every bite and gagging and choking down food he is not chewing because he is tired and does not want to eat anymore. I am tired of the daily battle at mealtime. I am just wondering how you know when you cross the line of wanting what is best for them and honoring their wishes when they have had enough? How do you know when they have had enough? Is it ok to stop the tube weaning and let the child decide when they are ready to wean or do we plod on ahead with the weaning because there is a chance that they can be weaned soon and everyone thinks we should try? I am just so confused and tired of all this….

After all that I am going to post some pics from the party so I can end this on a good note. Take care and God bless!


Melody

Nicholas getting some candy after the pinata broke...



Nicholas' Nemo cake...

Saturday, November 5, 2005 10:20 PM CST - Nicholas' 3rd Birthday Party!!

Sorry for the lack of update last night...Caringbridge was down for maintenance and I could not log in to update.

Yesterday was quite a day. Nicholas had his first and last DT session with the new DT. She hit it off well with him after he warmed up to her. They read a really cool Eric Carle book about a cricket and Nicholas LOVED it! Then, they played Play-Doh. Nathan had a 101 fever when he woke up and we had to go to the peds office after therapy and we learned our 3 year streak is OVER...one of our children officially has an ear infection!! Nicholas has never had one and the ped was pretty surprised...as was I!! He is now on abx and perking up a bit.

Today was Nicholas' 3rd Birthday Party. We had it at a park in my parent's subdivision where the equipment was all new and had such a good time! The kids played on the equipment and the adults visited, and then we had hot dogs, chips/dip, candy, and drinks. Next was the Nemo pinata, which caused some trouble. First, the plastic hanging loop broke off and so we had to string poor Nemo up by his tail...he looked like a fresh catch! He then lost his tail from a good whack and got a few good whacks while he was on the ground. Finally, Doug picked him up and tore him open and scattered the candy all around. The kids were so cute picking up all the lollipops and candies! Nicholas opened his presents after that and then we sang to him and enjoyed cake. My poor mother in law tried so hard to make the cake, but her new oven gave her fits and made 2 cakes fall. She finally had to buy a cake, which by the way, was really nice and yummy for a last minute purchase. I know we will be enjoying her culinary delights next year once she whips that oven into shape! I really appreciated the thought behind the effort, though, even if it did not work out as planned. Then, it was back onto the equipment until it was time to pack up and leave. I think everyone had a good time...I know we all did! Poor Nathan slept through almost the whole party as he was not feeling himself, but I think he had a good time as well.

We headed back out to the house for naps and then got quick baths as we were heading out to take pictures with our other nephews (Doug's brother's kids) for Christmas. This went a lot more smoothly than the time we took pics with my sister's kids for some reason. It wasn't quite as crowded, so maybe that helped. We finally got a good picture the last time they took one and also got a really funny one as well. The kids were all grumpy and hungry by this time, so we headed out to Burger King for dinner and ate together before they drove back across town and we headed home as well.

Right now, we have 2 exhausted little boys sleeping and I am trying not to nod off here myself. I think it is time for bed! Days like today make me realize how much my kids and their happiness mean to me. Seeing Nicholas having such a wonderful time at his party really lifted my spirits today. Watching him interact with all his cousins and friends and have such a happy joyous day was the best medicine I could have had to recharge my battery. I hope all are well. Take care and God bless!


Melody

Saturday, November 5, 2005 10:20 PM CST - Nicholas' 3rd Birthday Party!!

Sorry for the lack of update last night...Caringbridge was down for maintenance and I could not log in to update.

Yesterday was quite a day. Nicholas had his first and last DT session with the new DT. She hit it off well with him after he warmed up to her. They read a really cool Eric Carle book about a cricket and Nicholas LOVED it! Then, they played Play-Doh. Nathan had a 101 fever when he woke up and we had to go to the peds office after therapy and we learned our 3 year streak is OVER...one of our children officially has an ear infection!! Nicholas has never had one and the ped was pretty surprised...as was I!! He is now on abx and perking up a bit.

Today was Nicholas' 3rd Birthday Party. We had it at a park in my parent's subdivision where the equipment was all new and had such a good time! The kids played on the equipment and the adults visited, and then we had hot dogs, chips/dip, candy, and drinks. Next was the Nemo pinata, which caused some trouble. First, the plastic hanging loop broke off and so we had to string poor Nemo up by his tail...he looked like a fresh catch! He then lost his tail from a good whack and got a few good whacks while he was on the ground. Finally, Doug picked him up and tore him open and scattered the candy all around. The kids were so cute picking up all the lollipops and candies! Nicholas opened his presents after that and then we sang to him and enjoyed cake. My poor mother in law tried so hard to make the cake, but her new oven gave her fits and made 2 cakes fall. She finally had to buy a cake, which by the way, was really nice and yummy for a last minute purchase. I know we will be enjoying her culinary delights next year once she whips that oven into shape! I really appreciated the thought behind the effort, though, even if it did not work out as planned. Then, it was back onto the equipment until it was time to pack up and leave. I think everyone had a good time...I know we all did! Poor Nathan slept through almost the whole party as he was not feeling himself, but I think he had a good time as well.

We headed back out to the house for naps and then got quick baths as we were heading out to take pictures with our other nephews (Doug's brother's kids) for Christmas. This went a lot more smoothly than the time we took pics with my sister's kids for some reason. It wasn't quite as crowded, so maybe that helped. We finally got a good picture the last time they took one and also got a really funny one as well. The kids were all grumpy and hungry by this time, so we headed out to Burger King for dinner and ate together before they drove back across town and we headed home as well.

Right now, we have 2 exhausted little boys sleeping and I am trying not to nod off here myself. I think it is time for bed! Days like today make me realize how much my kids and their happiness mean to me. Seeing Nicholas having such a wonderful time at his party really lifted my spirits today. Watching him interact with all his cousins and friends and have such a happy joyous day was the best medicine I could have had to recharge my battery. I hope all are well. Take care and God bless!


Melody

Thursday, November 3, 2005 11:53 PM CST

All I can say is that today was a really horribly crappy day. I am not going to go into a lot of detail as we still need to talk to several people, but please pray for peace for us and for guidance in trying to figure out how we are going to deal with this new problem that has been thrown at us.

The boys had their speech consult yesterday and both did well considering. We still have the option of referring Nicholas for community speech and I am still torn about whether or not to do so. He more than likely will not qualify as the school district does not do work with oral motor and that is really more what he needs help with than anything else regarding his speech. It would be a good social thing for him and a small enough group for him to be able to attend with his immune deficiency, but I am not sure I want to clog up the system with a referral that is unwarranted, even though we are being encouraged to do so. We will never know for sure without formal testing....who knows. I have been debating this for mos now and still have not come to a decision yet. There is another program that the new DT (who came for a session with Nathan today) mentioned where they put children with delays in with typically developing kids and it is run by a Speech Pathologist. Nicholas more then likely would not qualify for the program as a child with delays, but he might be able to get in as a typically developing child and get some therapy work while he is there. It is another option we are considering. The DT is coming back out to work with Nicholas tomorrow and hopefully she will have more information about this program so we can look into it further.

Nathan had his first DT session with the new DT and he was less than thrilled to be handled and made to work and he was very vocal about his displeasure. She is really nice and I am sure we will get along fine as she is an Aggie and so is her husband. She dropped the bomb on me today that Nathan's PT is leaving ECI. I swear we are having the WORST luck with therapists. I sure hope the next PT we get is sticking around for a while and just as nice as the one we currently have...especially since Nathan is likely to be bumped up to PT every week from now on.

Nicholas' birthday party is this weekend. We are going to the park, eating hot dogs, chips, and cake, and playing on the equipment. We are also having a pinata. Everything is a Nemo theme and all turquoise and orange. So far, the weather forecast is for mid 80's and NO rain!! I am so happy about that! It should be a beautiful day for an outdoor party. We are then going to go get pics taken of all 4 of our and my brother in law's kids once we all go home and nap some. I just hope we have a better result this time than we did when we went with my sister. JC Penny is trying to be nice about the forgotten order and giving us 3 free portrait sheets for our trouble. I am glad they are trying to make amends for their mistake.

Be sure to check out the last journal entry if you did not see the pics of the boys in their costumes. It is worth a peek! Just click on Journal History to see them.

Guess that is all for us. Please, if you can spare a min, say a small prayer for us as we are facing a really difficult situation, and with everything we are currently dealing with regarding the boys, I am not sure I have the strength left in me to deal with this on top of it. Hope all are well. Take care and God bless!


Melody

Tuesday, November 1, 2005 11:35 PM CST

It is so hard to believe that the first day of November is here. Just 10 more days and my Nicholas will be 3!! I can hardly believe it. I can remember the days leading up to his birth just like they were yesterday!

Today was a pretty laid back day. Since Nathan and I have a touch of something, we all stayed home and had a jammies day. We ate, slept, played and relaxed. It was a nice day. Doug got home and we went out and picked up the pictures from when my sister and I took all 4 of our boys to get their pics done. If you remember my post about that day, it was a total nightmare working with that lady trying to pick out the pics and getting her to get things right. Well, I should have known something would have been wrong. The photo greeting cards my parents ordered and paid for were not there! Apparently, they had never been ordered! The lady said that the printout was not printing and to write the greeting from the card on the form and she would take care of it. I guess she never did. Boy, was I upset. The lady today was so nice and aoplogetic and I could not be mad at her as she had nothing to do with it. I am hoping it all gets worked out tomorrow and the pics will be ordered and coming soon.

Here are some pics of the boys in their costumes to leave you with for today. Enjoy, take care, and God bless!


Melody

Nicholas as Winnie the Pooh with candy on his face...


Nathan in his Hunny Pot costume (note the seriously unhappy face)


Nicholas and Nathan after trick or treating (note the new costume on Nathan as he HATED the oher and cried non-stop while wearing it...he is now a dinosaur and loving it as shown by the HUGE smile!)

Monday, October 31, 2005 11:42 PM CST - HAPPY HALLOWEEN!!! Happy Birthday, Samuel!

What a weekend! We helped Doug's parents move Sat and Sun this weekend. That was a bigger job, I think, than any one of us thought it would be! Things were finally all moved over and the rental house cleaned by late last evening. Doug helped his dad move loads of things over both days and Sat I helped Doug's mom hang clothes in the closet and organize the clothing and shoes in there. I also helped her start papering shelves in the master bath. Sun, I helped with lunch, made dinner, and papered shelves and unpacked and organized the guest bathroom. It doesn't really sound like much when you see it written down, but boy was it a lot of work! It sure did look good once it was finished, though! We were glad to be able to help them, though, as they were so nice to take us in when the hurricane hit and they fed us for several days, so it was nice to be able to help them out in return. Sat night, we took the boys out to their neighborhood "Trunk or Treat" which is where all these cars pull into the parking lot, trunks facing out, and hand out candy from their decorated trunks. It was great! The boys made out like bandits, which was a good thing since it stormed most of the afternoon and was raw, cold, and really windy for trick or treating tonight! We made it to about 6 or 8 houses and gave up as it was way too cold and raw outside. We have a lot of candy left over as we only had about 6 kids come by our house. We finally gave up and went to have dinner at Rain Forest Cafe at the mall since kids in costume eat for free. Nicholas loved the calamari and corn and left out of there full.

Earlier today, the boys and I stopped by the toy store to buy Nathan a new costume. Let's just say he HATED the Hunny Pot costume and we needed to find something he would NOT scream bloody murder in the whole time we were out! We also did the shopping for the paper goods for Nicholas' birthday. I am in sticker shock that paper goods could cost that much!! Even mixing the Nemo plates with generic plain color ones! Ah, well. If he loves it, it will be totally worth it!

My sister came through her surgery with flying colors this morning, so it was a good day. Hopefully, she can go home tomorrow. Nathan is feeling a bit better and is no longer croupy. He is still pretty sniffly though. I am trying to come down with something, so I am really trying to take it easy and not overdo.

Guess that is about all for us. Hope everyone has a wonderful start to November! Take care and God bless!


Melody

Friday, October 28, 2005 10:20 PM CDT

This has been just one of those days! My parents came over, we had back to back DT sessions and the therapist was running way late. Then she drops the bomb on me that she is leaving to go back to school and today is her last day! We had to have an impromptu IFSP meeting to transfer our cases over to another person and that took a while. I rushed to get lunch into Nicholas and me, nurse Nathan, and then try to get both boys into bed for a quick nap before heading out the door to the ped. We spent the afternoon in the peds office. Nathan has a terrible case of the croup. It seems like the breathing tube he had during his surgery yesterday has really irritated and inflammed his airway and that, coupled with the sniffles he has had, has caused him major problems. His breathing is SO bad and he has this terrible noise when he breathes regularly and it is worse and he is retracting some when he cries as he has to suck in his breath so hard. The ped gave him a cough med, decongestant, and Oropred to see if that will help him breathe. We are going to have to call him tomorrow if it is not better. Ugh! We so did not need this after the day we had yesterday!

Tonight was a bit better though. Nicholas got to have a blast at his godmother's carnival at the school where she works. He played games and won the cakewalk on his very first try ever! He came home sporting a bright orange frosted chocolate cake shaped like a pumpkin and boy was he proud of it! There was pizza and drinks and he even tried a pink iced cupcake for dessert. He came home also sporting a bag full of trinkets and candy and a smile that told it all! I am glad he had a good time! I am glad for this as apparently his sensory issues got the better of him in the middle of it and he needed to go someplace quiet. He was screaming for someone to read him a book in the deserted library. Thankfully, he calmed down and was able to make it the rest of the night. He also has a black eye brewing as a lady's camera swung around and smacked him right in the eye! Poor guy!

Tomorrow, we are going up to Doug's parent's house to help them move and then let the boys "Trunk or Treat" at the country club in their neighborhood. Hopefully that will be enough candy to sustain him for a while!

Guess that is all for today...it was more than enough for me! Hope all are well! Take care and God bless!


Melody

Thursday, October 27, 2005 9:54 PM CDT

Thank you to everyone who has thought of us today. Nathan was given the go ahead for the surgery after the urologist gave him a really good once over to inspect the rash and everything went well . He is fussy from pain, but has done great otherwise. There was another NAthan getting the same thing done scheduled in the slot before our Nathan and it was pretty confusing for everyone there! They had to keep checking and double checking name bands to make sure they had the right kid! They said this had never happened before....guess there is a first time for everything! The procedure lasted about twice as long as it should have (which was really stressful!) due to him having several thick bands of scar tissue from the botched circ that they had to cut through as they could not stretch them like they wanted to and they also discovered he has a Hypospadius. They opted not to fix that right now, but to wait and see if it causes him any further problems down the road and will reconsider repair then if necessary. He has a lot of little tiny stiches there and it looks pretty painful. They were going to give him something called a Caudal Block that is similar to an Epidural, but they could not find the landmarks on his spine and opted not to try. So, that has left him in greater pain unfortunately. They sent him home with some med called Lortab which, thankfully, is working like a charm!

Nicholas got to go to Burger King for lunch and then to the zoo with his grandma and her friend and they all had a WAY better time than the 3 of us did!

Thanks again for all your good thoughts...we really needed and appreciated them today! Take care and God bless!


Melody

Wednesday, October 26, 2005 11:36 PM CDT

Nathan is supposed to have his surgery tomorrow to revise his botched circumcision and he now not only has a mild case of the sniffles, he also has a fungal infection in his diaper area!! Ugh! We have spent the better part of today on the phone trying to see if he is still ok to have the surgery. The weather down here had been hot, cool, hot, cool, warm and now cold, so he now has the sniffles because of that I think. It is clear and he has no other symptoms. The nurse said that everyone she had seen in pre-op today has had the same thing and nobody's procedure has been cancelled. They will listen to his chest and make sure that it sounds clear. The rash, we have been treating for several days now. It is looking better (about 50%) but is not gone. I asked the pre-op nurse this also, but she said it was too close to the area of surgery for her to answer and referred me to the urologist's office. The nurse there did not know and said she had to ask the dr to see what he said. The dr called back and said he could not say for sure if it would be ok without actually seeing it. Ugh!! He said he thought it would be ok from what we described, but he would not be able to answer definitively until we come in tomorrow and he looks. So, we are looking at making Nathan NPO, have to drive all the way downtown to the hosp, pay for parking, I take a day off from work, make my mom come all the way in to babysit Nicholas and there is a good chance they may not be able to do the surgery tomorrow. AHHHHHHHHHHH!!! We have been stressing about this all week and just want it OVER!!! PLEASE keep your fingers crossed that we can do it tomorrow as planned! We will let you know what happens.

Today, Melody took the boys to the library for story time and both boys had OT. Nicholas' was scheduled and Nathan's was a make-up fom yesterday when a last minute cancellation happened during Nicholas' session. Both boys did really well, but Nathan is starting to get fiesty. Today, when she was working with him and he was tired of working, he scrunched up his face and hollered at her to let her know how much he disliked it. Nicholas had a dramatic, world class tantrum complete with throwing himself on the floor. It was all the OT could do to keep from laughing out loud. I'm sure that made her day interesting.

I guess that is about all for today. Please keep Nathan in your prayers tomorrow if you can. We would sure appreciate it.

Take care and God Bless!
Doug

Tuesday, October 25, 2005 11:03 PM CDT

Our OT for today was cancelled. I am wondering what is up with therapy lately. We have had every single therapy both boys receive have to be rescheduled this last time they were to have it. Crazy. We declared today a pj day and stayed in our jammies. Nathan still has the rash and I really cannot tell if it is getting better...if it is, it is minimal. He also has a case of the sniffles. I am really frustrated as we really do not have the time to reschedule this surgery next month and I am not sure they will let him go under general with all he has going on right now. Ugh! I will probably take him in tomorrow if things are not looking better for him.

We heard from the feeding clinic (FINALLY!) and his eval is scheduled for Mon Nov 7. I hope this will finally get the ball rolling for Nicholas and we can address the oral issues he has going on right now.

Tonight, I went out for a much needed girl's night dinner with a friend and we had a GREAT time! We are thinking we need to do this once a month as we really need the break from the kiddos. Doug took the boys for take out BBQ and they watched the Astros. Much as I missed the boys, I really needed it and I am feeling a little bit recharged for a change, which is nice.

Guess that is all for today. Take care and God bless! Go Astros!!


Melody

Monday, October 24, 2005 11:44 PM CDT

Brrr!! It sure got cold last night...and we are LOVING every minute of it!

Today, we had PT for Nathan and it sure did not go like I had planned. We need to order some special therapy bike shorts for him that are called Hip Helpers and look like bike shorts with the legs sewn together. This is supposed to help keep his legs together so he cannot abduct his hips. His poor little legs are so froggy and this is supposed to help that. They want to do Nathan's 6 mo re-eval a couple of mos early since the PT thinks he needs to add PT every week and maybe bump up his OT as well and/or add in Speech as well to address his issues with low tone in his mouth affecting his ability to move the food around. We sure do not want to have to deal with ANY issues in his mouth like we are dealing with with Nicholas right now. Anyways, the re-eval will most likely be early next month. I will keep you posted.

Nathan has what we think is a fungal infection in the diaper area. I sure hope it clears quickly since I am not sure if this will affect the surgery he is having in that same area on Thurs of this week. Please keep your fingers crossed that this will not be a problem or that it clears up quickly!

After the day I had, I sure needed to have something wonderful happen tonight and sure enough, it did! I had just finished nursing Nathan when Nicholas came in to say goodnight to me. He climbed up onto the bed and told me he wanted to see Nathan. Just then, Nathan started fussing and Nicholas said "Don't cry. It's ok...I here." Then, he gave Nathan a binky and put it in his mouth and said "Don't be sad. Don't worry about it" and then he sang Nathan You are my Sunshine and told him he loved him. I totally had tears in my eyes! After that, Nathan kept reaching out his fist and stroking Nicholas' face and Nicholas just kept giggling and saying "He got me! Nathan love me!" I had to call dh in so he could see it, too. Now, I just cannot stop smiling! What a really special memory that is going to be!

On that sweet note, I will end for tonight. Hope all are well. Take care and God bless!


Melody

Sunday, October 23, 2005 10:48 PM CDT - Happy 7 month birthday, Nathan!!

7 months!! Can you believe it??

We went to the birthday party today and had a blast! It was at Chuck E Cheese and Nicholas has been looking forward to this ALL week! He has done nothing but ask about when we are going to Chuck E Cheese since Monday when we got the invitation. He had SUCH a good time. Now, we will wait and see if he gets sick. Seems every time we take him there, he comes away with the sniffles at the very least. I am pretty sure he picked up a bad gastro bug the last time we went. I sure hope it is nothing big this time! Maybe we will get lucky and it will be nothing at all...hey, I can dream, can't I?

We ran some errands after the party...Ikea, BabiesRUs, WalMart... Lots to do and not nearly enough daytime hours! When we left WalMart to come home, it had turned COLD and the wind was blowing strong sraight out of the North! WOOHOO!!! I hope it stays!!

Tomorrow, it is back to the grind...PT tomorrow, OT on Tues I think, and Nathan has his surgery on Thursday. I hope this week goes smoothly. I am starting to get nervous about Thurs.

That is about it for today. I hope all are doing well....wish our Astros were!! Oh, well...the next 3 games are here! Take care and God bless!


Melody

Saturday, October 22, 2005 11:37 PM CDT

What a crazy ending to the week!

Thursday, we went to baby storytime at the library and then the boys and I went to my parents' house to work on a quilt square. They took us out to lunch and we stayed until almost dinnertime. After that, we headed out to a Halloween party that a friend threw for the kiddos. It was so much fun and we did not get home until almost 9. I had to get everything done myself that night and did not even sit down until about 11 as Doug was out of town for a business meeting.

Friday, my sister came for a visit and we took all 4 boys and my parents to JC Penny to get the boys pictures taken. Trying to get pics for 4 boys under the age of 4 was quite something and everyone had cried at least once before we left. It took us over 2 hrs to get the shots, pick them out, and pay for them. Crazy as more than half that time was spent with a very unhelpful employee trying to assist us in picking out, ordering, and paying for the pics. We were SO glad to get out of there! Afterwards, we took a picnic lunch to the park and let the boys loose. They were so ready to run after being cooped up for so long! We went back to our house and met the boys godmother and her parents gfor a bit before they went down for a late nap. Then we loaded up and went to her apartment for a swim and pizza party. Doug got dropped off from his trip there and met us. We had a blast visiting with our friends and got to bed SO late last night!

Today, we had riding lessons this morning and then came home for lunch. My parents met us here and they watched the boys while Doug and I did some yardwork. I cut the 40+ bushes we had in the yard and Doug moved stuff back to the patio from the garage and picked up the clippings in the front yard. Tomorrow, we will have to get the ones from the back bagged. Then, after a quick shower, we all went to my mom's school and attended her school carnival. Boy, did Nicholas have a GOOD time! There was a firetruck there, lots of food, bounce houses, and plenty of games. What fun!

Tomorrow, we have a birthday party at Chuck E Cheese, so it will be another busy day! I am tired already and thinking of tomorrow really wears me out!

Hope all are well. Take care and God bless!


Melody

Wednesday, October 19, 2005 11:36 PM CDT

Wow! It has been 2 days since I have updated! Sorry for the delay!

Not much has been happening here, so I have not had much to say. That is kind of nice! Monday we just hung around the house in our jammies and played and ate and had fun! No therapy or anything!

Yesterday, we went to my sister's house and visited. We bought some things for Nicholas' upcoming birthday at the party store. He wants a Nemo theme, so we went to scope out the plates and napkins and such! The boys had a good time playing and everyone got along really well for the first time in a long time. I was so happy about that!

Today, we went to storytime at the library and met my mom at her school for lunch afterwards. Nicholas LOVES going to her school and today was no exception. We also had his psychologist over today and Doug took off a bit early from work to meet with her as well. We discussed a lot of things and have a good plan in place for Nicholas, which includes a slow weaning from the binky. That is going to be interesting for sure! I think we are going to have all the binkies "live" in the crib now and he can only have them in the crib or go stand at the crib to "visit" them. We will see where we go from there. I hope it is ok.

Here is the best news of all....Nicholas' overnight feeds have been the same for months now, but he has been doing better and better with his oral intake and today was weigh day. This was also the 3rd straight weigh day that he GAINED!!! 5 oz since last Wed and that makes him over 28 lbs now!!! WOOHOO!!!! I am SO happy!

Nathan is doing well and his development has been going in leaps and bounds it seems lately. He is now really trying hard to sit up. One day soon, we hope to see him sitting! Nathan is gaining like a champ! He has not met a food he did not like yet. He now takes 4 tbsp of cereal with 2 oz of formula and 1 2.5 oz jar of baby food thickened with rice cereal AFTER nursing! And he does this 3 times a DAY! He is packing it on! It is a refreshing change to have a baby that actually eats!

We are having tons of success with eating here and development and we are LOVING IT!!!

Thanks for everyone who has prayed for Nicholas and Nathan. The prayers are working and I am SO grateful for everyone who has lifted up a prayer in their names! It is working, so please keep it up!! Take care everyone and God bless! Oh, and if you missed the pictures we posted of our day at the pumpkin patch, please click Read Journal History and check them out!


Melody

Sunday, October 16, 2005 10:58 PM CDT - Happy Belated Birthday Preston!!!

I ran out of time to update last night, so here is Preston's bday wish a day late! Sorry!

We went to the birthday party yesterday and had such a good time! There was food, friends, and a bounce house...what mre do you need?? The boys had such a good time there! After that, we went to dinner with some friends of ours who were there at the party with us and then hit a good sale at Kohl's on the way home. It was a busy, but productive day!

Today, we went to church and then came home to change and head out for Dewberry farm, a wonderful working farm with a HUGE pumpkin patch! We went on a suggestion from my brother-in-law, who goes to this place every year with his boys. It was SO much fun! They had a playground for the toddlers, another one for the bigger kids, a corn field maze, a little corn train ride, a hayride that takes you to the pumpkin patch, a petting zoo, a singing animated chicken show, and a whole lot of other stuff. We got to go right out in the pumpkin patch and choose our pumpkins. I never knew there were so many different kinds of pumpkins, so we got 4 different kinds. I was amazed at the price too....35 cents a lb, so we got 54 lbs of pumpkins for $17 and some change. Here are some pics....

Nicholas and me on the corn train...


Nathan and Daddy on the corn train...


Nicholas and me on the conveyor belt slide...


The "boys" on the hayride...


The boys with daddy in the pumpkin patch (note the beautiful moon in front of them)...


The "boys" with our haul of pumpkins...



On that note, I am going to end for th night...it was a long day and I am beat! Hope all are well! Take care and God bless!


Melody

Friday, October 14, 2005 9:49 PM CDT

We had no therapy and no appts today...but it was NOT a day of rest! My mom came over and was prodding me to get some more work done in the room we are turning into a nursery/playroom and she came over to help. We did a lot in there this morning and then went over to my parent's house for lunch. Then, after our visit, we came home to rest.

Nicholas has been having diarrhea and a low grade fever all day. I sure hope he is not getting sick! Especially since his cousin's birthday is tomorrow and we don't want to miss it! We had to miss his 1st birthday party as Nicholas had just had surgery and was still recovering in the hospital.

In addition to the birthday party, we also have riding lessons, a small going away party, and picking up some scrapbooks over by my sister's house tomorrow. A lot in one day! We will see if we get to do it all...

Guess that is all for us today. I am thinking we can get into bed early...at least I hope so! Take care and God bless!


Melody

Thursday, October 13, 2005 11:56 PM CDT

We headed out to the library for baby storytime this morning and had so much fun! Nathan loved it and enjoyed "talking" to a friend's baby. Nicholas was VERY well behaved as well...I was so proud! We played with his new little friend again today with the blocks in the library and were invited over to their house for lunch and a playdate today. We were excited to go and had a wonderful time! Our boys played so nicely with each other and even with their almost-one year old while the mommies got some much needed time to visit.

We came home in enough time for the boys to nap while I went on a hunt for suitable clothes to wear in their pictures. I found a slate blue sailor suit I had to iron for Nathan to wear and a really nice navy blue trimmed polo onesie with light blue, navy, and white stripes and navy slacks for Nicholas to wear. We took Aggie outfits for the boys to wear in a picure together. As soon as Doug got home, we headed out for the appt.

We got there and there was this huge 9 member multi-generational family ahead of us and they were taking FOREVER to get their pics done...individuals, couples, families, the whole family. Crazy! We had an appt at 6 and finally got in to get ours taken at 7. Nicholas did well until the together pics. He was losing it by then, but was trying SO hard to cooperate. Those did not turn out too well, but Nicholas' were GREAT! Nathan went next and his were adorable! The best ones were of him in just a diaper and nothing else. So much for all the ironing on that tiny little outfit! The therapists are going to be SO thrilled with the poses as he was on his tummy pushing up with his arms extended and holding his head up so well in one! In the other, he was laying on his back and grabbing his feet with his head turned to the camera and smiling a huge grin! We spent way too much money and are goig back next week to do the pics with my sister's boys. I hope we do not have to wait so long next time. That family was still picking out their pictures at 8 pm when we left.

Guess that is all for today...that is more than enough! Hope all are well! Take care and God bless!


Melody

Wednesday, October 12, 2005 11:41 PM CDT

What a day. We went to the library and had a blast. It is a whole new adventure now that Nathan is not in his infant car seat. It made it really hard to focus on Nicholas as this storytime is Nicholas' time, but I am not sure he noticed or even cared. Since Nathan is not sitting, it made it trickier, but it turned out ok. We played for a bit with some friends afterwards before we left and a good time was had by all!

We were to have Nicholas' psychologist come over today, but she called and told us she had a stomach virus and could not come. After yesterday's nightmare, I was really looking forward to talking to her, but I am glad she was considerate and did not want to introduce a germ into our house. She is coming next week instead.

Tonight, the boys godmother made a surprise visit to come and pick up the thank-you notes I had written for her and one of her coworkers. The boys were loving having her here! Nicholas kept her busy reading to him while Nathan snuggled up to her and was a big flirt! They are both such charmers!

Tomorrow is baby storytime and hopefully a good nap for both boys before we head out to get their pictures taken...Nicholas' 3 ys pics (his bday is less than a month away!) and Nathan's 6 mo pics. I cannot believe how fast they are growing up!

Guess that is all for now. Hope all are well! Take care and God bless!


Melody

Tuesday, October 11, 2005 11:49 PM CDT

Nathan had a wonderful OT session this morning. The OT was super happy with his progress and told me that it was obvious how hard we have been working with him. I was so happy that she is seeing the progress. For us, seeing him every day, we think we see progress, but it is hard for us to know for sure as we do not get the benefit of having a lapse in the time we see him to notice a more significant improvement. I just want him to be able to do the things his same age peers are doing and make the good progress we know he can make and it seems as though he is doing just that! I couldn't be happier! YAY Nathan!

The rest of the day was laid back. We played, ate, Nicholas and Nathan napped, and then Nicholas and I had some one on one time while Nathan finished napping to make a loaf of banana bread. We forgot the baking soda and it came out really dense, but it still tasted really yummy!

Nathan is doing well with the introduction of solids. He LOVES his cereal and will take 4 tbsps per sitting and probably more if we would let him! He has tried Rice, Oatmeal, and Barley and he loves them all! We started him on Squash Sunday evening and he is not quite as convinced of this one, but seems to be tolerating it more and more every time. Today, he actually ate 1/2 the jar at a sitting 2 times and kept most of it in his mouth! Tomorrow night, we get to move on to Sweet Potatoes! We will let you know how that one goes!

Tomorrow, we are really going to try to go to the library storytime and then Nicholas has the psychologist coming after naptime. He had another nightmare today and I think I figured out what is scaring him so badly. I think he is dreaming that I am not there and then, he wakes and sees me not in the room and freaks. He cries with this cry like I have never heard before...just filled with terror. All he can say is "Mama...I just want mama!" when I go in there to get him. I was racking my brain earlier to try and figure out what would make him think I would not be there and the only thing I came up with is the fact I was in the hospital all those times overnight and I was NOT at home with him. I know that was particularly hard on him and I am wondering if we are just now seeing the toll it really took on him. I hope not, but have no idea what other explanation there could be. I am really looking forward to talking to the psychologist tomorrow and seeing what her insight on this is. I will update if there is anything to share.

Take care and God bless!


Melody

Monday, October 10, 2005 10:48 PM CDT

It was a good day to stay in and relax. It rained most of the day and was gray and overcast, so we opted to stay in our jammies and laze around today. What a nice way to spend the day with my boys!

Nicholas has discovered Veggie Chips and loves them! This is the most of any chip he has eaten at once. They are addictive too....I can vouch for that! After our snack I put them away and we went to snuggle up and watch Little Einstein (yep, you guessed it....the brand new toddler version of Baby Einstein!) and he kept asking for more chips! I was so torn between wanting to give them to him and knowing that we would be eating dinner in about half an hour and did not want him to ruin his appetite for dinner. He got lucky and we had sloppy joes and he got to have some chips with it!

We got Nicholas' food diary and the associated paperwork faxed off to the feeding clinic at TCH and now we are waiting for a call back to hear when the appt with the feeding team is going to be set up. I hope it is really soon so we can finally get this show on the road! Not much else to report except that we have OT for Nathan tomorrow....I KNEW we had more going on than nothing this week. Hope all are well! Take care and God bless!


Melody

Sunday, October 9, 2005 10:26 PM CDT

We finally made it back to church this morning! Nicholas was hollering "Yay, church!" in the car on the way there. He has missed it. He practically dragged Doug by the hand all the way down to the nursery and everyone was so happy to see him. We also left Nathan in the baby nursery for the first time and he had such a good time playing, he was right where we left him when we went back to get him, smiling the whole time! I highly doubt he knew we were even gone! We then visited the pumpkin patch at the church before we left and were able to pick out 2 tiny (read palm-sized for Nicholas!) ones as Nicholas begged and all we had on us was a dollar bill! Next week, we will try for a bigger one when we have some cash on us! We might even get 2...one there and one at a place called Dewberry Farms where my brother in law takes his kids and told us all about on Saturday. It sounds like fun and maybe we can find some time to make it out there one day soon.

We came home and ate and then it was naptime for the boys while Doug went out and tackled our LONG neglected grass. He managed to get it mowed and it looks GREAT now! I am sure the whole street breathed a HUGE sigh of relief when they saw it after he finished! During this time, the boys' godmother came over and visited and we all went out and grabbed dinner together. We had a really good time!

We FINALLY finished Nicholas' food diary for the feeding clinic. Who knew it was SO much work to chart every substance that entered into his body for 3 days? The measuring is what kills you....that and trying to remember how much of what seasoning (butter, ketchup, etc) you gave to go along with it. Crazy! I am just glad it is done. Doug will fax it to TCH tomorrow and once they receive it, they can schedule the appt for the feeding team to see Nicholas. I just hope it is soon!

Guess that is all for our boring day. The palm pilot says we have NOTHING this week. Guess that means I was not good about writing stuff down as I KNOW Nathan has therapy at least once every week and Nicholas has the psychologist coming this week as well. I hope there is not anything else that I am not remembering! Ugh! Hope all are well! Take care and God bless!


Melody

Saturday, October 8, 2005 11:30 PM CDT

Yesterday was a pretty laid back day. We had back to back DT and that went really well. She was impressed with the kids and worked on chewing with Nicholas and sitting in the Bumbo Seat with Nathan. Then, we went out to lunch with sone friends, shopped a bit, and went back to one of their houses and baked cookies while the kiddos played. It was fun. I tried a new recipe and chopped ham and potatoes for what seemed like an eternity...it was only 1 ham steak and 5 potatoes, but still! It ended up pretty good actually, even if Nicholas did not care much for it.

Today, we woke and went to riding lessons and that was wonderful as the weather turned cooler and we did not sweat to death out there! After we left there, we met my brother in law and his family for lunch and Nicholas was thrilled to see his cousins again as we have not seen them since the hurricane. We left from lunch and went to ToysRUs and participated in a Bob the Builder play day there, where the kids got a free hard hat and building set sample and got to test out the newest building set from them. It sure was fun and the boys loved playing! We left from there and headed over to the local rice harvest festival and had a blast! We helped hand out fliers for the pasture where Nicholas gets his lessons while the owner and another lady who volunteers there ate and Nicholas strutted around and just sold the place! He petted he horses they had there, brushed them, and worked the crowd...he was in his element! Plus, it gave him an excuse to be out of the stroller and running around! We then went and ATE....those places have the BEST food! Hot dogs, Frito Pie, Kettle Corn, etc...Nicholas was thrilled at the purchase of Kettle Corn as that child would jump through hoops and eat just about anything to get some of that. It was a good purchase to give him the motivation to eat some of the things he might not otherwise. Besides...I love it, too! We got some Christmas purchases made and found a booth that was liquidating all their Aggie merchandise and found some things for Nicholas. Too bad they did not have Nathan's size. Ah, well....

Guess that is about all for today. We have two very exhausted little boys in bed right now and are fixing to head there ourselves soon as well. Take care and God bless!


Melody

Thursday, October 6, 2005 11:03 PM CDT

I am beat! My mom came over to help me work on turning the guest room into a playroom for the boys/nursery for Nathan. It was a LOT more work than we thought! We made a dent, but not as big of one as we were hoping. Oh, well...it is all progress! We also did marathon laundry as well. Whew! I am ready for bed now!

We went to the store this evening and seemed to buy the place out! That is what happens when you go out of town and then evacuate for a hurricane and never get in a decent grocery store run the entire time! I am hoping we are well stocked enough that subsequent visits will be much less money and items! We were literally running bare!

Not much else is up with us today. This was the first day this week we did not have therapy, dr visits, or plans...even though we were busy! Tomorrow is back to back DT, so it is going to be a long morning! Take care and God bless!


Melody

Wednesday, October 5, 2005 9:46 PM CDT

Well, we thought that Nicholas would be having his eval with the feeding clinic at TCH today. It ended up being more of a consultation and "getting to know you" type of appt with the GI. She did decide that Nicholas does indeed need the eval and we were sent with a packet of paperwork and a food diary to keep for 3 days so that we can complete it and fax it in and they will schedule the eval when they receive it. The GI was nice and did her residency at the same time our GI was at TCH, so they know each other. She had some nice things to say about him and I am hopeful that they will be able to work well with each other. It will also be nice to have a TCH staff GI we know, just in case Nicholas ever ends up in the hospital as his GI obviously won't be able to drive from San Antonio to see him. I felt really good about the appt and really liked the GI. She had a great sense of humor and Nicholas liked her too....that is the Gold Standard for drs for us these days. He gave her a hug before we left. She also said that she has an adopted daughter who came to her with a tube. That spoke volumes to me as well. She seems like a genuinely good person.

We also got to see Nicholas' favorite nurse while we were there. She had a "hot date" and could not stay for too long, but it was nice to see her again. We try to see her on days we are there when we can meet up.

On a side note, the only bad thing was when we got back to Doug's work and I was dropping him off and he was looking for my cell phone to turn it on for me and he could not find it. Darn shallow pants pockets! It had fallen out at the hospital! Doug called it and a hospital employee answered, told us some kind person turned it in, and they had turned it on in the hopes that the owner would call it. Tomorrow Doug is going to go get it on his lunch break as we will not be going back until the 27th. Ugh...what rotten luck to lose it, but what good luck that a nice person found it and turned it for us.

That is all for now. It was a long and exhausting day. Hope all are well. Take care and God bless and please sign the guestbook so we know you were here. It means a lot to us to see the kind messages people leave.


Melody

Monday, October 3, 2005 9:20 PM CDT

Well, we heard from the neuro and I am not sure how to feel about all of this...good, bad, or otherwise.

At our last appt, the neuro told us that if the MRI came back fine, the nurse would call us and if she needed to discuss anything with us, she would call us herself. My heart fell on the floor when I answered the phone and it was her on the phone. She said that the scan showed no "gross anatomical abnormalities", so that is good news. It did show that he has something called "decreased/delayed myelinization" and "thinning of the corpus callo-something or other"...I cannot remember exactly the name for it. So, I asked her what does this mean for Nathan's prognosis and she said she is not sure...it could mean a lot of different things, but most of those we will not know until he is older. Basically it seems it is going to depend a lot on how he progresses with his development from now on. She wants to continue seeing him every 3 mos for at least a year and keep tabs on his development. She said she thinks we should know a lot more about how things are going by the time he is the age where he "should" be walking and we will see what he is able to do then. She was glad to hear he is holding his head up more now and has started rolling over some as well, so that is good that he is showing the progress that he has so far. Now, we hurry up and wait....

All I know is that I am feeling very overwhelmed right now. I have had the whole pity party of "Why my kids?" and
"Why us?" and feeling so bad that now I have to watch another child struggle to reach every milestone and I am over it now. I just want to keep going like we are and watch my baby make progress every day and look into his beautiful face and see that sweet smile meant just for me and let my heart melt with my love for him. There are not 2 children who were wanted more or loved more and that is all I want to think about now.

Take care and God bless!


Melody

Saturday, October 1, 2005 10:25 PM CDT

What a day! Slept in late, grabbed a doughnut for Nicholas and kolaches for us for breakfast, and headed out for riding lessons. They were able to get all the horses to higher ground before the hurricane and back again afterwards with no major incidences. Not bad! Nicholas rode his favorite, Beau, and had a ball! He loves to drink water there as they have a big cooler and he can fill his styrofoam cup himself from the spigot and then drink it out of the open cup. He does pretty well with it, too and it is a perfect place to practice since it does not matter if he spills since it is outside and he is usually so dirty he needs to change clothes when we get back anyway.

We stopped for a snow cone on the way home and Nicholas liked it. Nathan even had a tiny taste and seemed to like it too. Then, it was home for naps to rest up for the birthday party. After nap, Nicholas popped up in his crib and when I asked him if he wanted popcorn for a snack he replied "no thank you...just birthday cake!". What a ham!

Nicholas had a blast at the party. They had a bounce house and playground and he wore himself out playing so hard! They had the biggest pizzas I had ever seen for dinner, too! The diameter of the pizzas must have been 24 in across! Each piece was about 12 in long! I have never seen anything like it! Then, they had a 2 tier castle shaped princess cake with whipped cream icing and chopped strawberries and kiwis in the whipped cream. It was yummy!

Tomorrow, we are going to be still working on the house trying to get it back in shape after the hurricane. Putting it all back is WAY more work than putting it all up there! Hope all are well! Take care and God bless!


Melody

Friday, September 30, 2005 11:54 PM CDT

No news today from the Neuro...so, I am hoping that no news is good news, right? I just hate the thought that we are going to have to wait until Mon now to hear anything. Oh, well! I am going to stop thinking about it before I drive myself nuts this weekend worrying about it!

PT went well today. It seems that every time Nathan has one issue improving, it brings another issue to light that was masked by something else. Now, working on his rolling is the newest addition to the therapy regime. I am just glad he is making such progress from all the work we are doing with him.

Nathan is LOVING his newly added diet of solids. He really enjoys eating the rice cereal and has now worked his way up to 2 tbsp of cereal 3x a day! He is also sleeping a bit longer at night now that he has something with more substance in his belly right before he goes to sleep for the night. Doug and I are LOVING that part!

We met a friend for lunch today and Nicholas had such a good time playing with her older son, who is 3. Nathan and her younger son, who is almost 4 mos, had fun smiling at each other and interatcting that way. The mommies were a bit stressed, though, between feeding the little ones and trying to keep track of the older ones in the game area and making sure they both ate a decent amt of their meal. It was a nice outing nonetheless.

Nicholas and Doug finally got haircuts tonight. They were WAY past a little bit shaggy and totally NEEDED it to be done! Nicholas even said his hair was SO HOT and now that it was cut, it was not so hot anymore. Guess we let it go too long!

Tomorrow, we FINALLY get to take Nicholas for horse riding...it has been since before we went to Baltimore since we have been there! After that, we have a birthday party to attend. Should be a fun day! Hope all are well. I am going to close with a great email that my mother-in-law sent us. It is a really nice story with a wonderful moral to it. Take care and God bless!

Several years ago, a friend of mine and her husband were invited to spend the weekend at the husband's employer's home. My friend, Arlene, was nervous about the weekend. The boss was very wealthy, with a fine home on the waterway, and cars costing more than her house.
The first day and evening went well, and Arlene was delighted to have this rare glimpse into how the very wealthy
live. The husband's employer was quite generous as a host, and took them to the finest restaurants. Arlene knew she would never have the opportunity to indulge in this kind of extravagance again, so was enjoying herself immensely.
As the three of them were about to enter an exclusive restaurant that evening, the boss was walking slightly ahead of Arlene and her husband. He stopped suddenly, looking down on the pavement for a long, silent moment.
Arlene wondered if she was supposed to pass him. There was nothing on the ground except a single darkened penny that someone had dropped, and a few cigarette butts. Still silent, the man reached down and picked up the penny.
He held it up and smiled, then put it in his pocket as if he had found a great treasure. How absurd! What need did this man have for a single penny? Why would he even take the time to stop and pick it up?
Throughout dinner, the entire scene nagged at her. Finally, she could stand it no longer. She
causally mentioned that her daughter once had a coin collection, and asked if the penny he had found had been of some value.
A smile crept across the man's face as he reached into his pocket for the penny and held it out for her to see. She had seen many pennies before! What was the point of this?
"Look at it." He said. "Read what it says." She read the words "United States of America."
"No, not that; read further."
"One cent?" "No, keep reading."
"In God we Trust?" "Yes!" "And?"
"And if I trust in God, the name of God is holy, even on a coin. Whenever I find a coin I see that inscription. It is written on every single United States coin, but we never seem to notice it! God drops a message right in front of me telling me to trust Him? Who am I to pass it by? When
I see a coin, I pray, I stop to see if my trust IS in God at that moment. I pick the coin up as a response to God; that I do trust in Him. For a short time, at least, I cherish it as if it were gold. I think it is God's way of starting a conversation with me. Lucky for me, God is patient and pennies are plentiful!
When I was out shopping today, I found a penny on the sidewalk. I stopped and picked it up, and realized that I had been worrying and fretting in my mind about things I cannot change. I read the words, "In God We Trust," and had to laugh. Yes, God, I get the message.
It seems that I have been finding an inordinate number of pennies in the last few months, but then, pennies are plentiful!
And, God is patient...
Have a blessed day!!


Melody

Thursday, September 29, 2005 9:47 PM CDT

It's over, thank goodness!!! What a long day! We got there with plenty of time to spare and my parents took Nicholas up to the food court to eat lunch with them while I took Nathan back into the MRI area for his test. That was when the first problem occured. The nurse told me that no studies have been done on the effects of the magnetic field of the MRI machine on a nursing mom. I asked if it would be dangerous...they did not know. I asked if there was a chance of permanent damage...they did not know. I asked what other nursing mothers did and was told half go in and half do not. I asked the nurse what she would do if it was her in my shoes and she told me that she would not risk going in with him and reassured me that he would be sleeping the entire time and would not even know that I was not there. I decided to play it safe and not go in and that decision literally ripped my heart out and I spent the next 30 min while he was in there alone crying or with my stomach tied up in knots. He also had to have extra sedation as he fought the first dose and was not able to be sleeping deeply enough without more sedative on board. This was the econd problem as he has a heck of a time waking up from the sedative in the recovery room. He was SO sleepy he could barely open his eyes or wake up. He was not nearly coordinated enough to nurse and cried in frustration as he wanted to and just couldn't. We tried to give him pedialyte and all they had were preemie bottle nipples and he has a hard enough time with a regular sized bottle since he exclusively breastfeeds and the smaller preemie nipple was way too hard for him to suck on, so he cried out of frustration for that as well. He did manage to get enough to pass the drinking part of the going home protocol, so we got to pack it up and leave. He slept for most of the rest of the day and is still a bit loopy, but is now nursing just fine and smiling a lot again. We should hear results in 24-48 hrs. I was so impressed with Nicholas. He did SO well with my parents, eating and then sitting quietly in the recovery room before going to the train display and playing with that for a bit with my parents before we left. He did such a good job!

I am beat as it has been a long and draining (physically and emotionally) day. We need to head to bed early tonight and try to relax tomorrow as all we have on the agenda is PT. It should be an easy day. Take it easy and God bless!


Melody

Wednesday, September 28, 2005 11:56 PM CDT

The OT started off our morning with therapy for Nicholas. That went really well and we left when she did to go and pick up Doug from work and all of us then went to Nathan's Urologist appt. That appt was short, sweet, and to the point...the way I like them! He came in, took down Nathan's diaper, peered and poked in there for a min, and then remarked "He has quite a fair amount of excess skin down there...not like you did not already know that! Now is the time to take care of that!" Nathan officially has surgery Oct 27 at 1:30. He could have had it scheduled as early as next Wed, but I am not quite ready for him to have to go in just yet. I am also concerned with him having to have any sedative/anesthesia more than once in a week's time. That seems a bit exessive to me. Besides, Nicholas has his feeding clinic appt that day and that would have made for a VERY long day!

After that, we came home and the boys napped and after Nicholas woke, the psychologist came over. We did a lot of talking as he did not seem particularly keen on interacting much with her today...not sure why. We only have 6 more wks of therapy with ECI before Nicholas ages out. Can you believe he is almost 3?!?!? That has been such a HUGE part of his life so far...it is going to be SO strange when they do not come for him any more.

Tomorrow is Nathan's MRI. To say I am nervous and dreading it is a HUGE understatement. I am not looking forward to this at all. Doug is staying at work and Nicholas is going with us, as are my parents since I need an extra person to stay with Nicholas and sit with Nathan on the way home in the car to make sure he is ok. Please think of us tomorrow and spare a quick prayer for a good scan if you think about it.

Take care and God bless!


Melody

Tuesday, September 27, 2005 11:25 PM CDT

We finally seem to be settling back into our house and getting things slowly back in order after the chaos of the past couple of weeks.

Today Doug went back to work. I had to take Nathan into the ped for his 6 mo checkup. It was a GREAT appt!! The ped remarked how fabulous Nathan looked and said after seeing him at the 4 mo check, he was amazed at how well Nathan seems to be doing since then. He also said he could tell how hard we have been working with him and that it was obvious. I was so happy to hear this as we HAVE been working really hard with him and it is a really nice compliment to Doug and myself that the dr noticed it and remarked on it. Looks like ou hard work is paying off!! He also said that Nathan's head is looking a whole lot better as well and, at this point, he does not think Nathan will need a helmet!! WOOHOO!! That was REALLY good news! Nathan was 26.5 in long and 14 lbs 14 oz. I think he would have weighed more had it not been for that awful tummy bug he had last week making him throw up so much. I am pretty sure he lost some weight from that. Other than that, he was lookin' good today! Nicholas got a flu shot even though he is over the 2 yr age limit for rationing the shots as he falls in the "high risk" category due to his immune deficiency. I was SO relieved that he could get one! That germ scares the heck out of me where Nicholas is concerned! Nathan got one as well since he is under 2, in addition to his other 3 reg shots. Needless to say, there was a lot of crying in that room after the nurse was done! I was very impressed with Nicholas, though, as I asked him who should go first and he said "Nicholas go first!" and took his shot first. He was VERY brave and barely cried and even kissed Nathan after he got all 4 of his and told him it was ok. I was so impressed with him. He is growing up right before my eyes! Nathan goes back in 30 days for his flu booster. He is NOT going to be happy, but oh well...it needs to be done. And, for more good news....Nathan's head control has improved enough for him to start on solids and, let me tell you, he LOVED the rice cereal he had for dinner tonight! His eyes were saying "Bring it on!! MORE please!!". He ate the entire tablespoon of rice cereal in under 10 min and opened his mouth for EVERY bite, even the first one! He is also growing up WAY too fast! All in all, it was a GREAT day!

Tomorrow we go for Nathan's urologist follow-up and will hopefully know when his surgery to revise his botched circumcision will be. Then, on Thurs, we have his MRI. It is going to be a busy week around here. I hope it goes fast and we have some information and results really soon. As always, we will keep you posted!

Guess that is about all for us right now. Take care and God bless! Thinking of everyone!!


Melody

Monday, September 26, 2005 11:13 PM CDT

We got back home late yesterday from our inlaws. The house is still here and, except for a lot of debris in the yard and a big mess to clean up inside (from putting all our things up off the floor) and out, things look to be ok. We were very fortunate that the storm turned when it did. After watching the news, it is obvious just how lucky we are that we did not take the direct hit we were expecting to. Everyone in our family made it back home in one piece as well and all the houses seem to be ok. We do not know about Doug's brother's house yet as they were to return home today and we have not heard from him yet, but he was about 10 mi from Galveston and took a worse hit from the storm than any of the rest of us. Nathan finally recovered from his vomiting bug, but I caught a sinus infection from somewhere and am feeling pretty yucky right now. I had to go into the dr for some abx today and also was reevaluated for my Prevacid at the same time. The dr decided that I need my dose upped and if the new dose does not work, I will need to have an endoscopy done. Can I just scream I HATE REFLUX??? Ugh! Thanks for all the thoughts and good wishes. I really appreciate everyone thinking of us. Take care and God bless!


Melody

Saturday, September 24, 2005 9:21 PM CDT

Looks like we made it! We have had the power off most of the night and it has been on and off all day, but it seems to be on now for the most part. Up where we are right now, there were a bunch of trees down and it has been really windy and rainy, but that was the worst of it. It also seems like our house should be ok as our side of town seemed to fare ok. I talked to my parents (who live near us) this morning and they said it was really windy, but the rain was not too bad. Unless our tree blew down or we had some really bad straight line winds there, our house should be ok. We are going home to check it out first thing in the morning. Thanks so much to everyone for all the good wishes...in watching the news today I know it could have been SO much worse!

Take care and God bless!


Melody

Friday, September 23, 2005 3:37 PM CDT -Happy 6 month birthday, Nathan!!!!

Well, we are here...although, we came here to our inlaws thinking we were going to be in a better area of town and since the storm has taken an eastward jog, it looks like we would have been better to have stayed home. Oh, well....what can you do? Doug's parents, brother and his family, our boys' godmother, and the 4 of us are all here at their house...11 people, 3 cats, and 2 dogs. My sister drove to a town that normally would have been 5 hrs away and took over 14 to get there....including a flat tire on her boat trailer. Lucky for them, there was a really nice guy out buying ice for his family and stopped, ice melting, to help them repair it. She was lucky enough to also be able to get gas on the way there. My parents were going to go to my grandma's condo in Dallas, but the 5 hr trip to get there was taking people 24-36 hrs as of yessterday morning. They tried anyway and had to turn back as they were running low on gas. They made it home on fumes and are going to ride out the storm there. They have no gas to go anywhere and my mom has no desire to anyway after 8 hrs in a 102 deg car (trying to save on gas and not use A/C) and no way to use the bathroom. The traffic conditions have been horrific....people running out of gas along the road and there have been tankers sent in to help them refuel. There is no gas to be found anywhere around here. The local news estimated 2.7 million people evacuated, which is 1/2 the entire population of Houston! Our local busses have delivered over 45,000 bottles of water to those stranded on the evacuation routes. They are now sending out a last round of busses to pick up whoever is left stranded on roadways and take them to safety. A bus load of senior citizen evacuees burned and 24 people died when the brakes sparked and ignited oxygen canisters, causing big explosions. The whole bus was engulfed in minutes. This storm has already been a total nightmare and it has not even hit yet. I cried yesterday when I drove away from our house. We got everything up high except the big furniture and I have no idea if anything will be there when we return. All we can do is pray right now.

Thank goodness Nathan is feeling better. He finally stopped vomiting (knock wood) yesterday and has been acting more like his smiley self, slowly but surely. He turned 6 mos today! What a way to spend the day!! We still worry about how Nicholas will get his tube-feedings if there is no power, but I guess we will cross that bridge when we come to it. I will try to check back in when we can, but landfall is tonight. Please pray for our safety. Take care and God bless everyone!


Melody

Wednesday, September 21, 2005 5:34 PM CDT

Well, we are evacuating. Now that Rita has hit a catagory 5 and is packing 165 mph winds, we are not playing around anymore. We will be going to my inlaws house to stay with the inlaws, my brother-in-law and his family, and the boys' godmother. They are a little bit farther north than us and I think, on a bit higher ground. My parents will be going to Dallas and my sister is evacuating to just outside of Palestine. We will all be scattered and I am scared at not being able to contact them afterwards.

Nathan relapsed this morning and started another vomiting binge. With this storm looming on the horizon, it worries me that this bug is lingering and still causing so much of a problem for him. I am also worried about Nicholas having access to electricity for his feeding pump. We have a 24 hr charge on the battery, but have never tested it to see if it really lasts that long. That will last us at most 2-3 nights. After that, who knows what we will do for him to get his feeds.

PLEASE think of everyone down here in the hurricane's path and pray for us if you can. This storm could potentially be a bad disaster and the Gulf Coast does not need another storm like this. Take care and God bless you all. We will update when we can.


Melody

Tuesday, September 20, 2005 8:33 PM CDT

Well, I have spent a lot of today trying to add music to the boys' site and I am not sure if I have succeeded. I had it for a bit there and found out not everyone could hear it, so I changed music forms and now I cannot hear it if it is working. Hmmm.... Ah, well. Ihave given up for the time being. Maybe some of you will be able to enjoy sound even if I cannot.

Nathan seems to finally be feeling better. He tolerated milk last night and has been nursing since then, even if it is still not his usual amount yet. He is still listless, though not nearly as listless as yesterday. I am thinking we are finally getting over this bug. Nicholas is ok, Doug went back to work today and feels ok, and I am still suffering aches and headaches, but I think that I am on the upswing of this with Nathan and I am hoping tomorrow we will all be feeling more normal.

Nicholas has therapy tomorrow and that is all for us. It is also toddler storytime, but I am not taking Nathan out again until he is 100% unless it is to the dr for something. I am SO not risking his health for an hour out at the library. He had me WAY too scared yesterday! It brought back memories of struggling to get something...ANYTHING into Nicholas when he was 11 mos old and so ill he ended up at TCH and in need of emergency surgery. It is scary how quickly these little ones can go downhill. Anyways...enough of that trip down memory lane. That is one memory I would prefer to never have to relive again!

This hurricane is getting more and more concerning the more we hear about it. I am not liking how this is all looking right now. I am sure praying for it to die down or turn away from us. I guess we will see how things go.

Take care and God bless!


Melody

Monday, September 19, 2005 9:30 PM CDT

Sorry again for the lack of updates, but oh my goodness what a weekend! I am still under the weather and feeling pretty yucky and Doug ended up staying home from work today as he was sick, too. He started running a temp last evening and then, in the middle of the night, poor baby Nathan got sick and was throwing up too many times to count all night long. He has been hit the hardest by this and was listless and sleepy most of the day. Late this afternoon, he went on a vomiting binge again and we barely avoided the ER with him. We finally got him to hold fluids down by administering 5 cc of Pedialyte at a time every 10 min for an hr by med syringe and slowly increased it from there. Part of his problem is that he is definitely an exclusively breastfed baby and HATES bottles. He would not touch a bottle of Pedialyte with a 10 ft pole. He finally hit that brick wall of desperation earlier and was thirsty enough to actually drink from it. Once we got some fluids into him and kept them there, he perked up enough to want to drink more and then once he took more, he finally turned the corner and it acting much more like his smiley self. Thank goodness! I was really getting worried there for a bit. Doug thinks he is feeling well enough to go back to work tomorrow. As for me, the nausea is mostly gone, but this splitting headache is still lingering and I have been living off Tylenol every 4 hrs all weekend it seems. I hope tomorrow will be the end of this for me, too. Nicholas seems to be in the best shape of all of us surprisingly, but he also started in with this bug Friday, we think. Doug and I sure were dragging today trying to keep up with him while we were both sick and we had to tag team so we could take turns and rest in between. Fingers crossed we are on the upside of this bug and are all feeling back to normal within a few days!

We had to cancel Nathan's PT today, too. I was disappointed as it has been longer than normal since we have seen her due to us being out of town. Those therapies are SO hard to reschedule, too, so hopefully we can work it back in (this one was a make up also!). We also postponed his Urologist appt from the 21st (this Wed) to the 28th so just in case he is not feeling 100ack yet from being sick, he does not have to fool with that. We will keep the Friday well check appt and use it for a sick appt if he is not feeling better by then.

Guess that is about all for today. Tomorrow is a blank day...nothing scheduled, so I think we will be doing a lot of resting! Anyways, also please think of all of us down here in TX as this hurricane approaches. We took in so many people from Katrina that there are most likely not enough rooms for people here who need to evacuate...and those poor people are possibly facing weathering another storm! I just hope and pray it is not too bad of a storm and everyone makes it through ok. Thank goodness we have current flood insurance, just in case. We bought 8 gal of water today and will be keeping a close eye on things. We will leave if need be as we HAVE to have electricity for Nicholas' feeding pump. I just hope we do not have to...

Take care and God bless!


Melody

Saturday, September 17, 2005 11:00 PM CDT

We are back again and the boys' appts yesterday went REALLY well! Nicholas was excited to see the GI and shouted YAY and the dr's name when we pulled into the parking lot. He really likes his drs! Nicholas is still sticking on his growth curve from the last several visits, so it seems like we may finally have a handle on his growth....and he FINALLY hit 35 in!!! He had been sitting at 34 in since at least Jan, so this was great news! Nathan is getting to be quite the chunky monkey lately and he jumped from the 10th %ile to the 25th %ile in weight and stayed at the same %ile for height. Both of them are growing well. Nicholas got a good once over and pronnounced to be in good shape. We talked at length about the trip to JH and the motility appt and the feeding clinic eval from KK and, although he wishes the motility guy had called to discuss the manometry test and reasons he was not inclined to pursue the test for Nicholas, he also understood our reluctance to put Nicholas through any test that it was questionable if it was necessary. The GI is still in the process of getting his manometry testing up and running and, should we decide at a later time that Nicholas DOES in fact need the test, we can reconsider it then and maybe even get to do it here instead of travelling out of state for it. His equipment is even portable since it is brand new and has a micro-tube instead of the adult pinky-sized one, so it sounds like a better option anyway. Time will tell.... Nathan had a good appt as well. He has been doing so much better since we put him back on the Zantac (this time in addition to the Prevacid he already gets), that the GI cancelled the Gastric Emptying Scan Nathan was supposed to have done. So, even more good news! Again, we can always do it at a later date if need be. He thinks that Nathan has more traditional "baby reflux" and hopefully will outgrow it when he is older and not have to suffer the complications that his brother has had. I am SO thankful to hear that! We will be going back in 6-8 wks.

The rest of the day went well. We drove just outside of San Antonio to the outlet malls there and did a bit of shopping. Mostly it was stuff to replace ill-fitting or worn out clothing or things to put away for next season/year. Luckily Nicholas has gotten to be pretty predicatable when it comes to sizes, so he is pretty easy to buy ahead for. We travelled home and were able to spend a short time with the boys' godmother as she had a rough day at work and needed a pick me up. What better way to put a smile on her face than by seeing her godsons??

This morning we woke (a bit too early!) and got ready to head to my inlaws for the day to celebrate my birthday. When I went to get Nicholas up, the smell of dumping diarrhea hit me smack in the face before I even opened the door. I expected to find the usual loaded diaper, but was not at all prepared for what I saw. Poor Nicholas was literally sleeping in a crib full of diarrhea! It had leaked out and soaked through his pillowcase and into the pillow he was sleeping on at the time, it soaked through the sheet and into the mattress cover, it was all over his toys and caked onto his skin and hair everywhere. It was all over his clothing and turned his white socks brown all over. What a HUGE mess! Needless to say, there was a totally unscheduled bath this morning to scrub the stool off of him and his bed was stripped so we could wash the bedding before we left. We are washing it again tonight to make sure it is good and clean and we have yet to decide if the pillow is worth trying to clean or if we should just toss it and buy new. The toys are going to be a doozie to clean as well. Poor baby.

After the great clean-up this morning, we left and went up to the lake, where Doug's parents met us in a brand-new pontoon boat. This thing has a bigger engine than our car and the speed was pretty fast! I got so nauseated on the trip to the Mickey D's on the lake that I should have gotten something lighter than a burger, but when we left I was even more nauseated, so I had to go back to their house and lay down to let it mostly pass while everyone else played on the waverunner and went back out on the boat. I know I am a party pooper, but man, I do not feel too hot right now either. I am wondering if Nicholas and I have a touch of something. Even my 4 yr old nephew threw up in their car on the way home this afternoon. Maybe there is something going around. We are going to stick close to home tomorrow and rest in case we are a bit under the weather, just to play it safe. I am hoping this nausea will be gone by tomorrow...I am feeling pretty miserable right now.

I will end for tonight as I need to go lay down. Take care everyone and God bless!


Melody

Thursday, September 15, 2005 11:26 PM CDT

We had a fun day today! We woke and got ready to leave...then we went to the baby storytime at the library. We had so much fun there and Nicholas made a new little 3 yr old friend who had just moved here this summer from Dallas. The boys played with bristle blocks in the library and read a few Maisy books while the mommies talked and the babies (Nathan and her 10 mo old) were held or relaxed. We exchanged phone numbers and made plans to do something like lunch after the library next week. Should be really fun!

The rest of the day was laid back. I splurged and went through the drive-through at Mickey D's for lunch...the first time I have ever done this for just the 2 of us since Nicholas was born. Usually we only have take out if we meet someone for lunch...otherwise I always have fixed our meals. Nicholas was thrilled with this treat! He thought this was totally great and even ate a decent amount!

Tomorrow we travel to San Antonio for the boys' GI appts, so there more than likely will not be an update tomorrow night. We were hoping to take the boys to Sea World for the day, but it seems as though it is closed during the week now that school has started. That is disappointing. Ah, well. I am sure we will find something fun to do instead.

Here is the daily top 10 list for our church's hurricane relief outreach. Please know if you would like to donate, we will happily take any donations into the church for you or we can send you the church's addy and you can send them in directly. If donation is not your thing, prayers are gratefully accepted.

Today's Top 10 Most Requested Items
1. Bedding: pillows, blankets, sheets
2. Laundry detergent
3. Towels
4. Toilet paper
5. Paper towel
6. NEW packaged socks
7. NEW packaged underwear - large sizes for men and women
8. Air mattresses
9. Over the counter medications - Tylenol, Advil
10. Small kitchenware

Other items needed for the mini-grocery: juice boxes, bread, canned meats (Vienna sausage, tuna, SPAM, chicken), small bags of chips, small boxes of cereal, small jars of peanut butter and jelly.

Take care everyone and God bless!


Melody

Wednesday, September 14, 2005 11:33 PM CDT

Nathan is sporting a new, more "grown up" baby hairdo. He was getting a bit shaggy and people were remarking about it, so he got it cut. I was amazed at how much came off! Here is a pic of my baby showing off his baby blue eyes and handsome new 'do...




We went to storytime today and had a blast. After we left, we met a friend and her baby for lunch at Applebee's. We had a good meal...in between the babies crying and fussing and a cranky toddler touching everything on the table and being just plain ornery. It was a relief to get them home and down for a nap...which by the way....Nathan took another LONG one today in his crib! YAHOO!! Looks like we may have this under control now!!

Nicholas had therapy today and she used puppets to do some play therapy and we figured out that he is afraid of the dark! Who knew?? Tonight, he is sleeping with his night-light on for the first time ever. We have always had one in there for when his pump beeps in the middle of the night, but never used it as we had no idea he needed it. We will see how things go. She also wants to meet with us next time and talk about some of the things we have noticed. Should be interesting.

Guess that is all for today. Here is today's top 10 list from our church in case you are interested in sending us anything to take in on your behalf or send directly to the church if you would rather...and as always, prayers are gratefully accepted if donations are not your thing. Please email us if you need any addresses.

Today's Top 10 Most Requested Items

1. Towels
2. Deodorant
3. Tampons
4. Laundry detergent
5. Paper Towel
6. NEW Packaged children's socks
7. Large tubes of toothpaste
8. XL men's belts
9. Children's Tylenol or Motrin
10. Small kitchenware


Other items needed for the mini-grocery: juice boxes, bread, canned meats (Vienna sausage, tuna, SPAM, chicken), small bags of chips, small boxes of cereal, small jars of peanut butter and jelly.


Take care and God bless! Hope all are well!


Melody

Tuesday, September 13, 2005 8:14 PM CDT

Well, can I just say I am beginning to dread the therapists' visits? OT came out today and noticed that Nathan is having a bit of trouble with his right eye and is not tracking as well with that one as he is with the left one. Since he is weaker on the right side, it would make sense that it would be that eye. I have noticed it turning in on occasion before this and had mentioned it to the Neuro at his last appt. I put in a call to her today and she thought it would not be a bad idea to get him in to see a Ped Developmental Opthalmologist to see what is going on. So, we now have an appt tentatively scheduled for Nov. 17. The ped was not happy about waiting that long, so he is going to try to call in over there tomorrow and see if he cannot get Nathan in a bit faster. It is always something, isn't it? Crazy....

I got a call this morning from the TCH feeding clinic AND the Speech path who did Nicholas' swallow studies. He is scheduled to see the GI through there on Oct. 5 and the Speech path was tellimg me that the program is still in a fledgeling state and they still are lacking necessary licensing, protocol, and guidance to be a comperable program to Kennedy Krieger clinic and that was why she had not referred him before. I am thinking we might do ok with what we are doing now to help him eat here at home, but we need either an OT or SLP who specializes in oromotor strengthening and a dietician to help us. He also needs to work on getting larger amts of formula over a faster time (bolus feeds) to help stretch his stomach or he will never really be able to eat enough to get off the tube. He is having trouble with the volume when he eats. Once we do this for a bit, we can see what kind of progress we have made and the clinic at KK is always an option if need be. Maybe by then if we need it, Nathan will be a bit older and things will work out better for us to go anyway. I am trying to stay positive even though I am really disappointed that the program is not what we thought or hoped it would be. Who knows...we might get lucky and it will be enough to get us what we need for him. Fingers crossed...

The rest of the day was pretty laid back. I finally was able to get Nathan sleeping in HIS crib for a nap today and he rolled onto his tummy and slept for 2.5 hrs!!! WOOHOO!! I am not sure if it was the tummy position or if he was tired or what, but who am I to question it? I am just glad he seems to be doing better with sleeping ALONE in HIS bed for a nap! I hope this keeps up!

Anyways, time for 2 baths and 2 rounds of meds before bed! Hope all are well. Here is the top 10 list for our church's hurricane relief if anyone is interested in donations.

Today's Top 10 Most Requested Items

1. Towels
2. Air mattresses
3. Queen Sheets and pillows
4. Laundry detergent
5. Paper Towel
6. Children's Tylenol or Motrin
7. Feminine Hygiene products
8. Mini grocery items - Canned meats --Vienna sausage, tuna, SPAM
9. Bread
10. Juice boxes

Other items: large bottles of lotion and shampoo, razors, shaving cream, macaroni and cheese

Please contact me if you would like to send some items and have us take it in, or we can give you the church's address directly and you can send it in straight there. As always, prayers are needed as well if donations aren't your thing.

Take care and God bless!


Melody

Monday, September 12, 2005 9:30 PM CDT

Sorry for the lack of update again last night. We were experiencing technical difficulties with our internet connection again. Someone came out to fix it today. Turns out when we were offline for several days not long ago, they updated their equipment and the older modems did not like the upgraded equipment they put in. Things have been progressively getting worse until last night they were bad enough to call in. Unfortulately, the ancient desktop we have does not like the new modem at all and will not even load internet explorer, much less connect with it. Looks like Doug and I may be getting each other a new computer for Christmas this year! Ah, well. That one is 7-8 yrs old anyway and bought used, so it is about time.

Yesterday, we went to a craft show at the local high school and picked up some pretty nice gifts for several family members. Then, we had a really nice dinner at Outback Steakhouse to celebrate my birthday. We had a really nice day.

We had a laid back day today, other than that surprise visit from the internet guy. Nicholas had a pretty decent eating day and he *loves* the kettle corn we bought at the craft show yesterday. It was a good enough bribe to get him to eat a 1/2 slice of toast with peanut butter on it and he still ate some more popcorn after he was finished! We did a grocery run tonight as we are OUT of food. Since we have been receiving almost daily updates from our church as to what they are doing to help with the hurricane relief here in town, we were finally able to help out tonight. They have a "top 10" list for every day of things people are in need of and we bought several of each of jars of peanut butter, jelly, bread loaves, canned meats (chicken, tuna, and vienna sausages), and baby soap/shampoo. I hope this will help until we can do more. If anyone is interested in helping out with anything on the top 10 list, please let me know and I will be more than happy to take in anything you want to send here. They are looking for WalMart/Target gift cards and non-perishable/non-refrigerated foods like the ones listed above. Baby foods and baby related items (soap/shampoo, powder, lotion, tylenol, advil, gas drops) are also needed as well as adult underwear, socks, and linens (sheets, pillows, towels). Air mattresses are nice too since many of the people they have been serving (200-400/day) are finding more permanent temporary housing and need sleeping arrangements. If you have the desire to donate any of these things to our church, I can send you either our address if you do not already have it, or the church's address and you can send it directly there. If this is not your cup of tea, prayers are also greatly needed and appreciated.

Take care everyone and God bless!


Melody

Saturday, September 10, 2005 11:01 PM CDT

We had a really low key morning today. We skipped Nicholas' riding lesson so we could relax and rest and try to catch up on some sleep, but Nicholas went with Doug to pick up our usual breakfast of doughnuts. We woke so I could feed Nathan at 7:20 and then went back to sleep until Nicholas woke up at about 10:10. We really needed that time to sleep in. I think we are going to do the same tomorrow instead of going to church so we can get caught up and not be run down and risk getting sick from lack of sleep. I am looking forward to going back next Sunday though. We have missed being able to go.

This afternoon, we went to my sister's house for our nephew's 1st birthday party. I cannot believe he is one already! Time sure flies. Nathan will be 6 mos in a couple of weeks even! Nicholas had SUCH a good time at the party! They had rented a bounce house (moonwalk) and, even though it was sprinkling outside most of the time, the kids jumped like crazy and climbed all over the play structure my sister and brother-in-law built for both the boys' birthdays. It was great and they both did a wonderful job building it. My nephew will sure be one really well dressed boy this fall! He got some precious outfits and a few really nice toys. We gave him a helmet as the scrapbook album we were supposed to give him has not come in yet. The helmet was supposed to be for Christmas, but we will swap the gifts and give the scrapbook for Christmas now instead. After the party was over, we went to the Old Navy outlet and picked up some great deals. Then, we grabbed dinner out and had a yummy meal!

We are hoping to relax some tomorrow and lay low. We need to finish unpacking and do some laundry tomorrow as well as drop off some film and download some pics so I can post them here for everyone to see. Guess we will be busier than I thought! Take care and God bless!!


Melody

Friday, September 9, 2005 11:33 PM CDT

Ugh! Computer trouble! Let me try this again....
This morning was back-to-back DT sessions for the boys. We sure did not waste any time jumping right back into the swing of things as far as our hectic therapy schedule is concerned. Things went as well as can be expected from 2 sleep deprived kiddos. I am thinking it is going to be about a week until everyone is caught up on sleep, back on the reg time schedule and used to the time change, and feeling like things are "normal" again.

I have put in a call to the SLP who did Nicholas' swallow studies and also the feeding clinic at TCH. I am just waiting to hear back from them now. We also got the newer Immuno records sent up to JH (since we kind of forgot to do it last week like we said we would...ooops!). The Immuno did not send them ahead and we told them we would call and get them sent. Well, they have them now anyway.

We took the boys' godmother out tonight for dinner for being our kitty-sitter while we were gone. We had a great meal and discovered that Nicholas really likes fried crawfish tails. Who knew? Doug kept setting them out for him and he just kept eating them. He also made a good-sized dent in a cup of fruit cocktail. After the meltdown we saw from him right before getting settled at the table, I was not expecting him to eat much, if anything.

Tomorrow is our nephew's 1st bday party. We are debating whether or not to go to riding lessons, or stay around the house and lay low for a while to get caught up on resting. I guess we will see when everyone wakes tomorrow and go from there.

That is about all for today. Take care and God bless!


Melody

Thursday, September 8, 2005 11:08 PM CDT

Well, we are home!!

Thank goodness Nicholas slept for most of the flight home. He was SO tired!! He was actually asking to go to bed tonight...totally a first for him! He is now sleeping in his own bed and enjoying it, I hope. I am looking forward to sleeping in my own bed tonight WITHOUT a 2 yr old in it!

Yesterday, I had a GREAT day for my birthday! The RMD House chose us to represent them in the Mayor's suite at the Orioles game! The tix were given to several charitable organizations throughout the city as a recognition type of thing from the Mayor and RMD House was one of them. The ladies up front there told us they wanted to give the tix to someone they thought would appreciate them and want to use them. You did not need to ask Doug twice! They treated us really well and fed us until we thought we would pop! Too bad the Orioles did not win, but nobody cared. We had a blast!

We got a very preliminary report from the feeding team at Kennedy Krieger and the dx they have listed for Nicholas are Dysphagia (swallowing problems), Feeding Issues, Oromotor Dysfunction, and Sensory Issues. We are going to call the SLP at TCH who did all 3 of Nicholas' swallow studies and see if we can get some info and direction from her as to how to go about getting another eval with the feeding clinic there, or if we would even need to if we have an eval from another feeding team at a different clinic. Hopefully she can point us in the right direction.

Tomorrow both boys have DT in the morning, so it is definitely back to the same-o, same-o around here. Thanks again everyone who prayed for Nicholas and us on this trip that we could leave with some answers. We definitely got some good ones and I think we are on the right track to getting him off the tube eventually and eating like he should be. Take care evreryone and God bless you all!!


Melody

Tuesday, September 6, 2005 7:27 PM CDT - HAPPY 1st BIRTHDAY COLTON!!!!

More good news!

We had our appt with the feeding team at the Kennedy Kreiger Institute today and the team did concur that Nicholas does have a feeding issue and it is within the moderate range. He would require outpatient feeding therapy and would qualify for their program here, but they located a feeding program at Texas Children's that is very similar to theirs...so we would be able to do therapy there and not have to travel here for it. That is great news as their program here is 8 wks and paying for plane fare, lodging, and rent car for that amt of time would be very costly. The one at TCH must be fairly new as we have never heard of it before. The dietician/nutritionist thinks his caloric intake via mouth and tube is good and his height/weight ratio is where is needs to be, so no adjustments of tube feeds or modifications of diet are needed at this time. He will be ok until we can be seen at this clinic at TCH and they will make the determination as to how we are to progress from that point. The Speech Pathologist we saw thinks he still has a lot of muscle and jaw weakness and that is causing about half his problem. He has no rotary chewing and instead chews things either criss-cross or diagonally (not sure what this means as I never really paid much attention to his chewing beyond making sure he IS chewing!). Apparently this is not efficient and he uses a lot of energy chewing this way and tires easily. He also has trouble with sensory issues still within his mouth and the meats cause more problems as he loses sensory input the longer he chews it and it becomes a tasteless lump in his mouth and he is not sure if he has chewed it enough, needs to swallow it, or should spit it out. She thinks that this issue needs to be addressed or his eating will never improve without strengthening those muscles/jaw and working more to desensitize his mouth. The behavioral psychologist thinks that his issues are partly behavioral as well as he has never really had "normal" eating habits and he needs to be trained more in oral eating so he can "learn" to eat as he is supposed to. She said the things we have been doing to encourage and push him to eat more have been right on target (and I was glad to hear that as Doug and I have felt as though we have been bumbling around in the dark as far as that goes and unsure if we are pushing too hard or not enough or causing more harm than good) and she and the SLP were really happy that he got intervention and therapy as early as he did since he would be an even bigger mess right now if we hadn't. Overall it was a good and encouraging appt. They gave us the referral info for the feeding clinic at TCH and we will be contacting them as soon as we return.

As far as the manometry testing is concerned...it does not look as though we will be getting it. This GI has STILL not been in touch with our GI and I am NOT going to do a test on Nicholas unless someone says he needs it. This GI and the one from the feeding team consult today did not seem to think he needs it and I am not going to put him through this 24 hr miserable sounding test unless it is necessary. I figure we can always get it in the future if this feeding clinic therapy does not work out and it looks like he needs the test after all. All we wanted from this trip was to leave with more info than we came with and this feeding team appt seemed to answer a lot for us and that makes me feel as though this trip has been a success. Tomorrow, we will enjoy a free day and celebrate my birthday and then we will come home. I miss my bed and I think the boys are really ready to come back home to a schedule and routine again. Lord knows we have not had one since we have been here!!

Guess that is about all for our update today. Remind me to tell you about our 3 hr introduction yesterday to Washington DC public transportation sometime. That is a really interesting story! Take care, God bless, and THANK YOU for all the prayers you have been lifting up for Nicholas and the family. They are working!!!


Melody

Sunday, September 4, 2005 6:38 PM CDT

Howdy from Baltimore! We have computer access here at the RMD house so I thought I would update everyone on how things have been going...

The trip up here was LONG. They did not have pre-boarding for small children. Our flight was stuck on the ground for 45 min in a plane traffic jam, so Nicholas was climbing the wall to get off before we even took off. Add another 2.5 hrs of flight, ambulances/fire trucks on the runway when we landed, and trying to gett off the plane and get out of there with all our luggage (2 lg suitcases, 1 diaper bag, 1 carry on, 2 carseats, 1 base, 1 double stroller, 1 med bag) in 1 trip was crazy. Then another 45 min in the line to get the rent car and getting lost in downtown Baltimore in the middle of a football game night made for one crazy trip.

The next day was equally long as we had an immuno appt and another appt with the motility guy and met a lady from the reflux site who was also there for an appt. Immuno went well. They seconded our Immuno's opinion that Nicholas does indeed have THI and should outgrow it. Clinically he is doing well, and he does not believe that the gut issues and immuno issues are related. Good news for Nicholas there! Then it was off to GI for that appt. He took a pretty extensive history and looked Nicholas over. He is unsure if manometry testing is the way to go, so he wanted to consult with our GI before making the final call. Because of the late hour of the day on Fri and the holiday weekend, we have not heard back yet. If they do decide to do it, it will be scheduled for Thurs and we will need to change our plane tix home. He did say, however, that Nicholas' feeding issues are in the moderate to severe range and he needs an eval at a feeding clinic. He is the director (I think) at the feeding clinic at Kennedy Krieger Institute (also here in Baltimore) and got us an eval with their feeding team for Tues at 1 pm. That had to have been a miracle as their feeding clinic has a many months long waiting list. So, that is where we stand now.

We have had a lot of fun so far while here. We have been to the national zoo in DC, the zoo here in Baltimore, the national aquarium, and the Hard Rock Cafe in Baltimore. We still have plans to go to DC and see the monuments tomorrow, ride the train to DC on Wed and do some other things here locally. I will try to update more after the appt on Tues and let everyone know where things stand.

Guess that is about all for now. Hope everyone is well. Take care and God bless!


Melody

Wednesday, August 31, 2005 11:36 PM CDT

Sorry for the lack of update last night. Things have been crazy trying to pack and prepare for this trip. The latest crisis today was a frantic call to the airlines to ask if a pill cutter is allowed on the flight as the boys take meds that need to be cut in half. Who would have ever thought something so small could cause such a crisis? Oh, and FYI...you can pack it in with the checked baggage, but not in a carry-on.

We got the most wonderful news...the referral from the social worker at JH reached Ronald McDonald House today and we are going to be able to stay there. I know the Lord is watching out for us as this trip is such a financial strain on us right now, but I will do anything (including going bankrupt if need be) to ensure that my children have the BEST medical care they can get. We are just going to have to work around this particular financial hurdle. But, staying there will cost us only a $15/night donation instead of the $90/night before taxes we were going to be paying if we had to stay in a hotel. That price x 7 nights would have been a hefty bill! At that rate, we could donate twice the minimum amt and still come out WAY ahead!

I am also going to be able to meet 2 people from the reflux board I post on while there, so that should be fun! I am looking forward to this trip, but apprehansive at the same time. All I know is that I will consider this trip a success if we come home with more info than we came with. Deep in my heart, I am SO wishing we do NOT come home with another dx, but I also know that if we do, we will deal with it the same way as we have all the other ones. Nicholas will still be treated like the normal kid he is and nothing will change that!

I will try to update from there if we have computer access so everyone who follows Nicholas' story can know what is going on. If not, please look for a LONG upate when we get back. Take care everyone, God bless, and we will be back soon!


Melody

Monday, August 29, 2005 11:36 PM CDT

And now, the long-awaited neuro appt update......

We went to the appt today and the neuro, after taking a pretty extensive history on Nathan, examined him thoroughly and told me (and my parents who went with me) that there was definitely something neurological going on with him, but had no idea yet what that would be. She has ordered an MRI to be done on Sept 29 and wants to see us back in 3 mos (or less depending on how the next couple of mos go and what the MRI says). She wanted to try to give him some time to "catch up", but gave me a list of reasons I need to call if I see anything along those lines happening. At the next appt, she will also be drawing blood for some basic genetic testing. We talked a bit about possibilities for a dx and since we have no family history of any muscular diseases or genetic problems that we know of, she is looking more along the lines of cp and the like. She said we might be lucky and he could only have developmental delays, but with some of the things that he is doing being concerning (like having a hand preference, the lack of good head control, etc) she is not so sure about it being only this and nothing else. We now "officially" have the dx of Torticollis, mild Plagiocephaly, Hypotonia, and developmental delays. Most of these we already knew were dx from the testing, xrays, evals, and measurements he has already had done, but they are now "official". As for the helmet, she was unsure of if he would need one and I had to get back with the ped about this and see what he thought. I got a call back from him earlier to update him on the appt. He said it went mostly like he expected it to and will be keeping the whole helmet thing in mind and reevaluating him when we go in for his 6 mo checkup and we will be amaking a decision then about the helmet. I am unsure as to what to think or how to feel about this. I had a gut feel from the reaction of the therapists that this was not going to be an easy appt. I guess I am just kind of numb and knowing I have to deal with Nicholas this week and focus on him means I have to process this in a hurry before we leave on Thurs and switch gears to prepare for that. It just seems like we hop from one medical issue to the next with no breaks these days. I just keep reminding myself to keep it all in perspective...we tried so hard to conceive that these problems we are facing now are trivial in comparison to how much these children were wanted, longed for, and dreamed about. They are our lives, our world, and our everything...I wouldn't trade a moment with them for all the stress free days in the world!

On that note, I will end for the day. We have a lot of packing and preparing left to do, so I have a lot to keep me busy! Take care and God bless!


Melody

Sunday, August 28, 2005 9:52 PM CDT

Sorry for the lack of update last night. We had been gone to a birthday party and had to leave when the weather got really bad and the power went out. There seemed to be a lull in the storm, so we got out before we got stuck there for the night. Turns out we were on the leading edge of the storm and were able to stay ahead of it all the way home. The wind was terrible and blowing branches off trees and the little trees in the ground were bent over sideways from the force of the wind. If I did not know better, it seemed like it could have ben a mini hurricane! The lightning was realy bad as well and I had to turn off my computer to make sure it did not get fried. We were taking big bolts of lightning very near to us and it was kind of scary! Anyways....

Yesterday, we woke and headed our for our usual doughnuts before heading over to the pasture for riding lessons. It was so HOT and we did not stay long there as we had to get Doug over to the church when we were finished so he could make it to his appt to donate blood. We made it in enough time and Doug donated while I sat with the boys and Nicholas had a snack.

We left and got home in time for me to have a quick shower before running off to my appt for a massage. It was ok, but really hurt as apparently I am very tight. She had to do a lot of work on my back and still barely made a dent. She said if she had done any more, I would have felt sick like I had gotten the flu. As it was, I felt sore, headachy, and nauseated and had to pop Tylenol until this morning. She recommended I go back and I think I might. I think I have been neglecting myself for too long worrying about the kids and internalizing all the stress that goes along with that.

After I got home, we headed back out to the pasture for the birthday party last night and had a lot of fun. We ate grilled hot dogs and chicken and grazed on snacks. Then, due to the extreme heat, we packed it up and headed to their house to continue the festivities there. We sang karayoke while the kids played and Nicholas thought he was such a hot shot as he was able to play with the "big kids" all by himself for a change. He was thrilled....that is, until the power went out and panic ensued. He freaked and Doug went to rescue him in the dark. That was when we left.

Today, we officially started the quarentine. We mostly stayed at home, with the exception of running a few errands. We went to Babies R Us to see how Nathan fared in some of the bigger Britax carseats. We had originally wanted to get him a Marathon like Nicholas has, but he lacks the muscle tone and head control needed to sit in a bigger seat like that and keep a good body position. We were looking for a seat with some type of insert that will help him stay upright without slouching and also be able to be removed when he gains enough control to no longer need it. They had a few newer Britax models there that were the basic Marathon seat with some extras. One had head "wings" that looked promising, but that feature was not removable. There was another seat that had a padded insert similar to the one we bought to doctor up his current carrier and when we sat him in it, he was, for the most part, sitting straight and snug. We may need to add some washcloths to stuff in the areas he might need extra support, but it seemed to be perfect....and the best part was the insert was removable! So, we will be dropping some big bucks for it, but it will be well worth it as it fits until 65 lbs and will not need replacing for a very long time!

We also went to Gymboree and found a couple of items on sale there for an extra 20% off the sale price. After that was Toys R Us for some toys for the plane and then WalMart for some basic groceries to last us until we leave.

Guess that is about all. We are doing lots of laundry and need to mow the grass and make a packing list and get the bags down and start packing. Ugh! So much to do and so little time. Oh, and Nathan's Neuro appt is tomorrow. I have been trying so hard not to think about it that I almost forgot to mention it. Guess that is working then! I will update tomorrow as we have information. Hope all are well. Take care and God bless!


Melody

Friday, August 26, 2005 9:48 PM CDT

Today was a fun day....purely social, and we all had a great time!

My parents invited us over for a visit today and we stayed, played, ate lunch, napped (Nicholas anyway), and watched Baby Einstein. Both the boys seemed to have a good time and you know Nana and Grampy were in 7th heaven playing with the boys! My mom sure does love working part time this year!

Doug called while we were over there to tell me that a friend had invited us for dinner and a playdate and also to tell me that we had MISSED the call from the motility specialist at Johns Hopkins....the one we have been waiting literally WEEKS to hear back from! Ugh!!! He said he would call back on Mon so I sure hope that there is NO WAY that we miss this call this next time!

I left my parents house, got gas (OUCH!), and headed over to our friend's house. We had a good time with the kids playing and we all ate and it was a nice visit. We had kind of lost touch with these friends for a bit with the birth of our 2nd babies and all that. It was nice to get together and play like old times!

Guess that is all for today. No word on the stool samples except that it would be pointless for us to redo that one sample the lab messed up, which is what we thought in the first place. We will update when we hear something more. Take care and God bless!


Melody

Thursday, August 25, 2005 8:29 PM CDT

It was a slow day today...a nice change after the busyness of the rest of the week. The boys and I went to the baby storytime at the library this morning. Nicholas was really careful and as well-behaved as can be expected of a 2.5 yr old. Nathan smiled for a good part of the program this time and I think he is beginning to enjoy it now.

Nicholas' eating is slowly but surely picking up some now and today he ate a kid-sized carton of yogurt for lunch and for dinner he ate all his peas and steak and some cheesy rice as well. I am impressed as he is trying really hard to eat more. Still no word on the stool sample results and we have not heard back from the GI as to whether or not we need to redo the one the lab messed up.

Nathan's clean-out went well last night. He went with the suppository and then again after we turned out the light and laid down for bed. What a sound he made filling his diaper in the dark! Needless to say, we had a quick diaper change before we could go to sleep! Today he did not cry nearly as much, so I am hoping that was the problem and he is feeling better now.

Guess that is about all for us today. Pretty boring and I am totally ok with that! Hope all are doing well. Take a min and sign the guestbook and let us know you were here. Take care and God bless!


Melody

Wednesday, August 24, 2005 9:32 PM CDT

I got a not-so-good wake up call this morning. The lab where we took Nicholas' stool samples called to tell us that they messed up. Needless to say I was NOT happy. Apparently, they were unclear what our GI wanted them to do with the frozen sample and they left it out on the counter while they waited to hear back from the GI and it thawed while they waited. They wanted us to go back up to the lab for another sample cup and redo the sample. I was not so sure that we should as the reason for doing the samples was to see what was going on when he was sick. They were from a week ago now and taking a sample NOW is not going to tell us what we were looking for last week when he was getting over his stomach bug. Besides, it is not easy to load up 2 kids, a diaper bag, and a stroller and unload it and then reload it again for a sample cup. We put a call into the GI to see what he wants us to do and we will go from there when we hear back from him.

I bit it and decided to take the boys for story time today. I figured that I did not want to freak out the library lady out as she knows that the only reason we miss story time is for illness, an appt, or something major. We will go tomorrow and make sure we tell her we will be out of town next week. Nicholas had a great time and I met 2 moms there today who were really nice. It was fun.

Nathan has spent much of the last 2 days crying inconsolably and I have no idea why. His sleeping is off, too. We are going to give him a glycerine suppository tonight and clean him out and see if he is backed up. I hope that this helps. He has not had a good diaper in a while.

Nicholas met with his child psychologist today and that seemed to go well. He is opening up more to her and it feels like we are making some progress. She can get him to identify some feelings now and we even played dr today with his dr kit. Doug and I have been telling Nicholas about the trip nxt week and why we are going, so she was glad that we have been letting him know what is coming. She will be seeing him again the day before we leave, so I am hoping she will have some last min tips for us.

We met some friends of ours for dinner tonight and had a great time. Nicholas ate a pretty decent meal (for him) and even ate a whole roll before eating his main course. That, for him, is a lot! He had a good time playing with his little friend and their baby was good, as was Nathan. It was nice to have other adult interaction for a change and, with their little boy there to keep Nicholas occupied, we actually got to sit and visit for a bit afterwards as well.

That is about it for us today. Not much to report...I actually LIKE these boring days! Take care, take a min to sign the guestbook, and God bless!


Melody

Tuesday, August 23, 2005 9:34 PM CDT - Happy Birthday, Nana!!! Happy 5 month birthday Nathan!!!

Oh my goodness....my baby is 5 mos old today!!! That is getting WAAAAAY to old for me! Wasn't he just born?

We had a double dose of OT today and I left this therapy session feeling even more anxious and worried about this neuro appt than ever. Ugh! Monday just cannot come fast enough!! On a more positive note, the OT was thrilled that Nathan was reaching for and trying to grab his toes! We also noticed that he is responding to his name as well...smart boy! We had a long talk about the appt and boy am I glad that both my parents are going with me. This is all very overwhelming and this is stress I sure do not need right before our trip. Oh, well. At least we will get it all over with all at once and maybe then things will start to settle down some for the remainder of the year. I can always hope, can't I???

We met the playgroup for lunch and they were nice enough to wait for us as we were running late from the therapy marathon. Nicholas had a great time and ate pretty well. I was impressed! Both boys had a LONG nap once we got home, and I actually got a small nap in, too.

The boys' godmother met us for dinner and we had a great time. We have not seen as much of her these days since school started back up for the year. It was nice to spend the time with her.

I am getting to bed early tonight. I was up late last night overhauling the boys' site. I was tired of the caringbridge supplied backgrounds and wanted something special for the boys. It looks good, I think, and I am now trying to figure out how to do music. Anyone who checks in knows, please let me know how to do it!

Anyways, enough about us! Please sign the guestbook and let us know you were here and how things are going! Take care and God bless!


Melody

Monday, August 22, 2005 9:05 PM CDT

Another Monday...and another double dose of DT. The boys had back-to-back therapies this morning and boy, is that exhausting. Nicholas wants ALL the attention and has some trouble being patient and not trying to get in the middle of whatever the therapist is trying to work on with Nathan. He is not used to having to share his therapists. Nathan's PT is a different story as Nicholas does not know her and has never worked with her, so he does not see her as "his" therapist. His DT and OT have been with him for a while...DT since March and OT for the past 20 mos and once it has been "his" he does not think he has to share. Hopefully, this will be short lived and he will get used to turn-taking when they are here.

Nicholas did really well and she said how amazed she has been with how well he is doing overall and especially cognitively (thinking). Today, he sang her the ABC song, "read" her 2 books he has memorized, looked at several other books with her, reviewed colors and did some counting, and identified shapes and animals and their sounds.

Nathan made some BIG strides today. He tolerated quite a bit more time today than he has the last few sessions and got a lot accomplished. He had just woken and was in a great mood and he bent his legs and brought his knees towards his face and was reaching for his feet. Even though he could not hold on for long and he could not use all fingers or fully open his hand to grasp, he did it all the same and I was SO thrilled! He is making progress and that is all that counts! The DT was thrilled and the OT will get a big surprise as she comes back out tomorrow for their regular sessions.

We have GOT to get Nathan on some type of nap schedule. He is not sleeping much during the day as he has not been able to fall asleep on his own during the day (he can just fine at night) and he fights sleep so badly. Yesterday, he barely slept at all during the day and only got in a few catnaps of 15 or so min a few times. By the time 10 pm rolled around, he was SO exhausted, he just cried and cried and cried as he was way overtired and could not sleep. I was finally able to calm him and get him sleeping and he just crashed. Poor baby...we need to help him settle into a schedule so he can sleep, but I am not sure if we should try now or wait until after our trip as that is likely to throw any schedule we do adopt into a tailspin with all the running back and forth. I guess we will have to see.

Guess that is our update for today. Hope all are well. Thanks for dropping by to see us and we hope you will sign the guestbook and let us know you were here. Take care and God bless!


Melody

Sunday, August 21, 2005 10:23 PM CDT

No church today...the boys are under quarantine until our trip. We can not afford to have anyone sick before we leave to go to Johns Hopkins, especially Nicholas as an illness may skew the testing and we really need good results to determine treatment options. Instead, we ran a few errands and were able to pick up some Christmas gifts today. Melody completed her defensive driving today...finally. She is glad that responsibility is over. I think the boys have DT in the morning, so we will see how that goes. Hopefully, we will have some preliminary results from the stool samples.

Guess that is all for today. It was a pretty boring day. Take care and God bless!

Doug and Melody

Saturday, August 20, 2005 10:48 PM CDT

I think we finally figured out why Nicholas has been acting so funny about his riding lessons lately....he has not been riding his favorite horse, Beau. Beau unexpectedly lost a lot of weight recently and they have been working intensively with him to try to get the weight back on as he is their best therapy horse. Since it is summer here, it has been harder to get it on as the heat saps your appetite and you burn a lot of calories sweating to stay cooler. The kids have not been able to use him as his strength was not good. He is doing MUCH better and he started working with the kids again last weekend. Nicholas hopped onto him today with NO complaints or tears and rode him for about a 1/2 hr. That was a lot for him recently being sick and having missed the last 2 weekends. I am glad it was just a temporary thing as I know how much he LOVES to ride and it was so unlike him to not want to do it. He had a great time this morning riding and also having a screaming contest with the owner's son. Boy was it HOT out there, though!!

We got our usual doughnuts on the way this morning, per Nicholas' request and he was so tired when we got home that he went right down for a nap. That was a lucky thing as we were going to be going to my sister's house to celebrate my mom's birthday over dinner. My sis made potatoes and green bean casserole and Doug and I donated a gift cert for a Honeybaked ham and we also did the cake. My sister baked it and I decorated it. It turned out beautifully...yellow cake with choc icing and strawberry preserves in between the layers. It also had choc icing dipped strawberries decorating the top. It was SO good, along with the rest of the meal. My mom loved her gifts...a March aquamarine stone and gold baby boy charm from us for her necklace as she did not yet have one for Nathan and a pretty pink fleece-lined quilted vest with the stitching looking like breast cancer support pink ribbons. She loved them both! It was a great evening and she especially loved spending time with the family and her 4 grandsons.

On the way home, we stopped at Toys-R-Us as they are having a big toy sale right now and we found a really cool toy for Nicholas for a birthday or Christmas gift and we also found a couple of other things as well. It was a productive trip.

I am also very excited as we finally located a place here in town that carries the same brand of scrapbook that Nicholas has and we can finally get one embroidered for Nathan now. I was so sad, thinking that we may not get our chance to have one like Nicholas', which I love. We are also getting one for my 11 mo old nephew's first birthday next month and if we got one for our 4 yr old nephew of this brand, we will need to get one for his little brother. This way we can get them all while we know of a place that carries them. Our local place does not anymore and we have been searching for a while now to find another place that does.

Anyways, I think that this update is long enough for today. Take care and God bless! Sign the guestbook if you haven't in a while. I know Nicholas and Nathan will appreciate the good wishes everyone left once they are older.


Melody

Friday, August 19, 2005 10:46 PM CDT

We got poop! Thanks to all who helped us out with the prayers for production! He did not go according to the schedule, though, and I ended up having to use a glycerin suppository, but we got what we needed and that is what counts.

Nicholas woke and had just a wet diaper and not the oily stool that I was expecting. We had started giving Nicholas his acidophilus tablets again on Wed as he was finally able to hold a bolus of 4 oz of water for the "cocktail" down with no trouble. We figured that the probiotics would be good for his system after the gastro bug and had not heard back from the GI to know to do otherwise. I had the sample vials/cups all out and ready for him to go and ended up having to tote them to my sister's house as we were expected there and had no more time to wait. I also took rubber gloves and the suppositories, just in case. By lunchtime, I knew that he needed the suppository if we were going to get the one sample frozen before we left, so I had to use it. He was SO offended and cried terribly...it made me feel SO bad as I knew how badly it made him feel and I HATED being the one to have to do that to him. It seems like he is WAY more defensive and protective of that area since the rectal exam as before that, he has never even fought us about even getting his temp taken and now, every time we are met with a struggle and protest. Guess I cannot blame him, though...it can't have been a pleasant thing. He was better after it was in and I let him up. Those things sure work as he had gone within minutes of placing it and instead of the oily stool I was expecting, I was met with a foul smelling clay stool instead. Leave it to Nicholas to change his stool right before a sample so we will NEVER know what the problem really was. Ah, well. I hope that means that the probiotics are working and we are farther down the road to recovery. If it stays that consistancy, we will need to start back on the Miralax. So far we have been avoiding it as his stools had been so loose. My poor sister nearly fainted when I told her I needed to use her fridge and freezer each for a sample. I guess the thought of that substance near the food you will eat is kind of...well, really disgusting! I have to give her recognition as she shook off the willies and made me bag them in ziplocs and let me put them in. Thx, sis! Ok...enough about poop...let's get on to a better topic! It still amazes me the things I will touch and talk about without embarassment now that I am a mother!!

We got there and had a small playgroup with the remaining mom from our original group (as the other 2 moms have since moved) and had a blast watching the little ones play. We ordered pizza and stuffed ourselves before it was timne for the kiddos to go down for naps. Our friend left and the boys relaxed in front of Noggin for a bit before it was time to hit the hay. Nicholas lost his "dk blue" (binky) and had to nap without it. He seemed to actually live to tell the tale, so maybe the binky weaning will not be as horrible and traumatic as we had envisioned. We can always hope....

On our way home, we had to stop and drop the infamous samples off at the lab. We made it there in enough time to get rid of them and we hope to have some answers back early next week.

On a side note...I received 2 very special and heartwarming emails today about yesterday's post. I just wanted to let you know how much those replies meant to me and to Doug. To our friends in MN and also Victoria (you know who you are!), THANK YOU for always checking in on us and keeping us all in your prayers. I also want to send our appreciation for the reminder that God is beside us even though at times, it is hard to remember and we need that gentle reminder, and also for the suggestions of ideas for our precious Nathan. All of you are special to us and we just wanted you to know how much we appreciate your support!

Guess that is all..and probably more than enough about the poop! Take care and God bless each and every person who checks this page. We love you all!


Melody

Thursday, August 18, 2005 8:44 PM CDT

I got a call early this morning from the boys' OT asking me if it would be ok if she came out today to make up Nathan's missed appt from last Fri (the one that had already been rescheduled from Tues). I said sure since we had nothing on the schedule after the baby storytime this morning, so it was set up.

We went to the baby storytime and both boys had a good time. Nicholas got a little overexcited around the babies and had to sit in a time out, but he stayed right by me the rest of the time and was really well-behaved. I was so proud. There were 2 other toddlers there as well and they were also really good. I was proud of him. We stayed to help clean up and made it home in time for her to arrive.

The OT session was a complete disaster. Nathan KNOWS when he is about to get therapy. Don't ask me how, but he just KNOWS and from the moment the OT touched him, it just went downhill from there. He became more and more fussy and eventually lost it completely and screamed inconsolably for 15+ min until he finally fell asleep out of pure exhaustion. The OT was distressed at what happened, especially when she heard that the past couple of PT sessions have been the same way. She thinks that the therapy is more than he can handle and he goes on stimulation overload and has to shut down because he cannot handle it. Poor baby. We barely got a thing done, but from the work she did do, she is also (like the PT) VERY concerned with his hands and feet. He apparently is trying to reach for objects, but does it with hands fisted and the thumbs in near his chin and pinkies out and tries to grab/touch with the pinkies. It was so unusual, that Doug and I did not even recognize it as reaching at all. She asked if he had had an MRI done and I said no and she told us to ask the neuro about it at our appt.

I am beginning to feel very uneasy about this upcoming appt. At first, I was only thinking that the appt was more of a formality to make sure things were ok, but now I am not getting that feeling anymore as the list of things the therapists tell us to ask keeps getting longer and longer. I have asked my parents to go with me as I am not sure how I would handle hearing any news that I am not expecting. I guess that, after Nicholas, I was looking forward to having a baby that did not have to suffer and struggle as he did and still does. Every appt and therapy session makes me feel less and less like that is going to happen with Nathan now. Ok...I am now done with that pity party. I am just going to continue to think positively and hope that they find nothing significant...and if they do that it is not a big deal and easily treatable.

We finally heard back about the stool samples for Nicholas late this afternoon and Doug barely made it to the lab in time with the lab orders before they closed to pick up the specimen cups/vials. Now, we sit and wait for him to produce. If he goes according to the schedule that he has been going this week, it should be first thing in the morning. I just hope he goes and hope it is enough for all the samples they need. We will keep you posted on the results...in the mean time, pray for poop!

Guess that is about all for us right now. Hope all are well. Please take a moment to stop in the guestbook and drop us a note. The encouragement means a lot to us and we are stressing out over the upcoming trip to Johns Hopkins 2 wks from today. Take care and God bless!


Melody

Wednesday, August 17, 2005 8:01 PM CDT

It was library day today! Nicholas was so excited to go as we had missed story time last week while he was sick. He was dancing around and singing and laughing and having such a good time. I was so thrilled to see him acting like he was feeling so much better. After we helped clean all the balls and puppets up, we stayed for a bit longer and Nicholas just ran and ran around the empty room. He was enjoying the freedom of running and had the luxury of an empty room to do it in. When he was about ready to drop about 15 min later, he reluctantly agreed to leave. We got home just in time for Dora and had a picnic lunch so we could watch it.

Nicholas' eating has not returned much since being sick. I know, for me, it always takes several days for the "blah" feeling to get out of my system to where food looks and sounds good to me again. I wonder if he is still in that "blah" part of the recovery or if this is his appetite now. I am hoping for a slow improvement and that it will get better. For some reason, he has been missing having the day feeds since we worked him back up to full strength/full speed at night and no longer needed to do the day ones. When he lays down for his nap, he has been asking "Where my milk?"... I have to tell him he gets it when he goes night-night. Maybe he just liked wearing the cool new backpack. Who knows? Since being back to the normal feeding schedule, he has had 2 really funny stools...Mon morning and this morning and the looked almost oily and were very loose. We finally got ahold of the GI today and he had not been able to reach us for the past 2 days to return our calls as the phones at the hosp where he works were malfunctioning and would not allow long-distance calling and his cell was stolen on Mon afternoon. He wants Nicholas to get a stool sample done to make sure all is ok. He was not sure if this is residual from the stomach bug or if it is something totally different. More on that as we get the info about it....

Nathan is still doing well and holding his own. He is chunking up nicely and Doug noticed at dinner tonight that he has a tiny double chin! He is going to be 5 mos old next week and is about to hit 14 lbs soon. It is hard to believe how fast my baby is growing right before my eyes!

Nicholas' play therapy had to be rescheduled for tomorrow at the psychologist's daughter had hives today. We will update about that in tomorrow's update. Guess that is about all for today. Take care and God bless!


Melody

Tuesday, August 16, 2005 9:37 PM CDT - Congratulations on 4 yrs, Mom!!

We had SUCH a good time at my mom's school today celebrating my mom and her 4 yrs of breast cancer remission today. She just loved the pink flowers that Nicholas helped pick out and we had a lovely lunch. She walked us all over the building so she could show off her 4 grandsons. It was a nice time and we all enjoyed it. Congrats on 4 yrs mom! I am SO proud of you!! I LOVE YOU!!

Nicholas is still feeling a bit under the weather, but not enough to slow him down. The peds office called with the final culture results and it came back normal. They said that low grade fevers are no biggie, just watch them in case it goes back up. He enjoyed playing with his cousin today, for the most part.

Nathan had PT today and we got a nice compliment as she noticed how much Nathan has improved since she saw him at the eval. She said she could tell how hard we had been working with him as he looked "so much better" than before. I was so happy to hear that. Unfortunately, now that the head and neck issues are not commanding all the attention anymore, she was noticing that he has problems with fisting his hands, clenching his toes, and has something called "Swan-necked" fingers. She wants us to mention this to the neuro when we go on the 29th along with several other things. His stomach has very low tone and that is a concern as well. I have an uneasy feeling about this upcoming appt, but I hope that anything we find (if anything at all) will be an easy fix. I guess we will see when we go. Fingers crossed that it is nothing out of the normal range.

We are all really tired, so we are going to try to call it an early night here. Take care and God bless!


Melody

Monday, August 15, 2005 11:52 PM CDT

Not much to report today... Nicholas woke with a low grade temp a bit higher than yesterday. I think he dd not sleep as well last night as he had been. He has been cranky and irritable and trashed the house with toys when he was not always the center of attention. I just let him do it as I was not going to reward him with negative attention like he was hoping to get when I saw what he was doing. He did get a lot of cuddles later when he was resting and being more compliant. Hope he sleeps better tonight....

Nathan is still doing well. He is getting so much better at holding up his head on his own when we do the "pull to a sit" exercise and his head is in midline more and more when he is laying down playing and not tilted so much like it was before. We sat him in his Bumbo seat (therapy chair) and he held his head up for a few seconds before slouching over to the side. Maybe we will hit a minute of sitting up like that sometime in the near future! Tomorrow is his first day with the new ECI therapist, so I am hoping that it goes well.

Tomorrow, my mom celebrates 4 years of being cancer free and I am so blessed that she is such a fighter and still here with us. The boys and I are going to meet my sis and her boys and take my mom lunch and pink flowers to school for a little celebration! Every year she stays in remission is less chance of a recurrence, so we will take every year we can get! I love you mom!

Hope all are doing well. Take care and God bless!


Melody

Sunday, August 14, 2005 8:07 PM CDT

Another laid back day here. Nicholas woke up and was only running a low grade fever, so I am pretty sure now that we are at the tail end of this bug (FINALLY!). That is all the fever he has had all day. He was actually a bit hungry and asked for donughts for breakfast, so we decided to take him in the hopes that he would eat something. He ate part of a donught, so it was worth the trip.

Later, we decided to run an errand at a store across town, so we piled in the car and left. It was mostly an uneventful trip, however. Can I just say how much I HATE shopping for jeans for myself? Ugh...it is the total pits!

Since we were over in that part of town, we decided to hit one of our favorite places for dinner there...Freebirds World Burrito....YUM YUM YUM! Any good Aggie (and longhorn I guess, too) knows about this place. They have the best burritoes there are. Nicholas ate more than I was expecting from the burrito I had...a few bites of grilled chicken, some rice, some tomatoes, and a couple of beans...pretty bland, since with my reflux, I pay for anything too spicy or flavorful. That is the most he has eaten since he got sick, so that was promising.

Doug is about to put the boys in the bath and then it is going to be an early bedtime for everyone around here. That is about it for us around here. Take care and God bless!


Melody

Saturday, August 13, 2005 9:40 PM CDT

YAY! Nicholas woke with a normal temp this morning and has been running just a low grade fever so far the rest of the day. He has also kept down all his meds for 2 doses today and has not retched even once. I think we are finally looking at this bug being gone! Nathan still has not gotten it yet, either (knock wood!), so we have been VERY lucky this has not been worse as it could have ended up in 2 hospital admits with the boys had Nathan gotten it and had Nicholas not had his feeding tube.

We had a pretty laid back day today. We skipped riding lessons as Nicholas did not need to be out in the heat at all and slept in. Nicholas was crawling the walls to get out of the house and kept asking to go "Bye-bye", so we broke down and decided to go on a short trip out. We ran an errand to Babies-R-Us and found some great sales there and spent all the money we got back for returning some things. At least we did not spend more! We cane home for a nap and both boys slept really well. Doug and I tried, but did not actually fall asleep. Ah, well! It was close to dinner when the boys woke, so we grabbed Chick-fil-a for dinner as Nicholas wanted chicken nuggets...I would do just about anything to encourage that appetite to come back! He ate about 1 nugget and 1 med sized waffle fry, so he is doing ok. We are still working him up to the full strength feeds, but are making progress. He is taking an extra can of formula a day to make up for lack of appetite and to try to regain the weight he has lost. We are hoping to be back to our regular feeding schedule by next Tues. Fingers crossed all goes as planned.

Other than that, there is not much else to report. Take care and God bless!


Melody

Friday, August 12, 2005 8:10 PM CDT

Well, today was somewhat better. The Feverall suppositories Doug picked up last night worked like a charm. He felt cool a couple of hours later when we checked on him and he was able to sleep better as well. He woke this morning with 102 and was doing much better after another suppository. I am hoping that means he is getting over this finally! The results from the urinalysis came back and, like we thought, there was no sign of infection. I guess this is just a bad bout with viral Gastroenteritis. Thank goodness for the feeding tube, though. The last time he had a gastro bug, he ended up at Texas Children's for 7 days and had emergency surgery a week later as a result. The tube, I am sure, has saved him from a hospital admit this time. He is back on day feeds to compensate for a slower rate overnight and making up for lost oral feeding calories by day, but that is way better than the alternative. We are working him back up to the faster rate slowly but surely and he actually ate a breadstick for dinner tonight. We are making progress!

Nathan, still, has managed to avoid getting the bug. I am so happy about that! Today was his last PT session at TCH and he showed off for the therapist (when he was not screaming!). He is now able to hold his head steady when we sit him up from a laying position (she called it a "pull to sit") whereas, just 2 wks ago, he could not do that at all. His head measurements look better as well, though she was not totally sure about the numbers as Nathan was screaming and wiggling so much, making it hard to measure and hard to hold the measurement on the calipers after she lifted it from his head. The rest of the time he spent fussing and crying. I am sure it was from getting up earlier than usual and having a poor feed (he could not stay awake!) before we left. We start PT with ECI next week. Thank goodness they are coming in the afternoon!

Other than that, it was a pretty uneventful and boring day. We sat and laid around a lot and rested. Looks like we will be taking it very easy this weekend and making sure this bug is gone for good. He is sitting at 101 right now and will be needing to take it easy until the fever is gone. Hopefully the appetite will return when the fever goes.

Sorry for the lack of internet connection last night preventing us from updating. Look below for the update as I had the update all typed up and it crashed right before I was going to post this. Take care and God bless!


Melody

____________________________________________________________

Update from last night that I was unable to post due to the internet connection crashing right before I posted it...

TUESDAY, AUGUST 11, 2005 8:45 pm

I am going to be brief tonight as I have one very sick little guy here who needs me.

Nicholas' fever spiked to almost 104 last night and he retched up all his meds. He woke in the middle of the night screaming and crying in pain to the point where we had to call the on-call ped and he was up for a couple of hours. Doug had to run out to get some children's Motrin as ours was almost gone and the Tylenol alone was not cutting it for his fevers. This morning he woke with the same 104 fever and we had to take him back in. While there, the ped did a strep culture, bloodwork, and tried to get a urine sample. We were sent home with the cup and were unable to produce, so he had to go back and get catheterized for a urine sample. He has been hooked up to the pump most of the day to keep hydrated and is generally miserable, nauseated, and feverish. Doug is out on another pharmacy run right now to get some Tylenol suppositories as Nicholas has been unable to keep down meds, even for the fever now. As soon as they hit his tummy, he retches them right back up. So far, the news from the peds office is that the strep culture (so far) is negative and the bloodwork shows very low white cells, which they are assuming is indicative of a viral infection. No word on the urine as it was late when they got it, but we should hear something tomorrow.

We had to cancel Nathan's PT appt today due to the illness here, but so far he has not shown any signs of getting whatever Nicholas has. Thank goodness! With a fever like that in a young baby, he would almost surely be admitted.

Anyways, fingers crossed we knock this germ out soon. It is really taking it's toll on my poor baby. He looks lethargic and haggard with flushed, pink cheeks and sunken, purplish eyes.

Take care and God bless!


Melody

Wednesday, August 10, 2005 8:45 PM CDT

Update - Nicholas just retched up all his meds for tonight, so we took his temp and it was almost 104...looks like we will be going back to the ped tomorrow. Please keep him in your prayers if you can...he is really sick. :(

----------------------------------------

Well, needless to say, today did not go at all like it was planned to go. We were SUPPOSED to go to the storytime at the library for Nicholas and then meet his Nana (my mom) for lunch at her school as today is the first day of school here. This is what REALLY happened...

Nicholas woke this morning and was playing quietly in his crib. I needed to feed the baby, so I let him play while I nursed as he seemed to be having a good time and not upset or crying or shouting for me like he does when he is ready to get up. After I finished with Nathan, I went to get Nicholas up and give him his meds and the smell of his blowout diaper hit me smack in the face as soon as I walked in. Poor baby had had terrible dumping diarrhea all over and so I had to strip him and his bed. That was when I noticed how hot he was. He had a moderate temp and has kept that all day so far.

So, we went to the dr and he was trying to be his usual energetic self and he wore himself out. He was draped limp over the side of the stroller by the time we left. Still running fever and not drinking. I have gotten him up to around an oz at a time via tube and he will not take more than 2 sips at a time since he retched up the pedialyte this morning. The GI told us that he did not care if Nicholas ate anything solid for a while, but we needed to keep him hydrated, so we have him on a continuous drip of pedialyte right now. We also had to call the HHC as we thought we had the 500 ml bags for the Infinity, but they were Enteralite bags and we are having to have them overnight them out to us along with some pedialyte so we can use the backpack tomorrow. I am hoping it will not overload his system. The ped is pretty sure it is some type of gastroenteritis as Nicholas was the 4th one he saw with it today and it was only 2 pm! The ped also saw a suspicious tonsil as well, so he told us if Nicholas' fever goes up any more, we have to go back in and if we did not see improvement by Fri then we had to go back in. No abx yet as he does not want to aggrevate the diarrhea. He is crashed in his crib sleeping right now. So far, Nathan seems to be ok...fingers crossed he stays that way...

I have to say we are really lucky. We know just about everyone at our pharmacy (since we are there so much) and dh called them to see if they could pull some pedialyte off the shelf for us so we could go thru the drive thru and not have to take the kids in and they said they could. Our pharmacist pulled it for us herself when we got there. She is just the best!

I swear these kiddos are going to be on quarentine the week before we leave to go to Baltimore at the rate we are going! I am not sure what we will do if someone gets sick!

Hope all are well. Take care and God bless!


Melody

Tuesday, August 9, 2005 11:07 PM CDT - NEW PHOTOS ADDED!!

Whew! What a LONG few days without internet access! Let me see if I can sum up the past several days so you don't miss anything!

Friday - We finally made up Nicholas' DT session. It was ok, but she had SO much paperwork to fill out (to add Nathan's PT and Nicholas' play therapy) that all she had time to do with him was to read a few books with him or have him tell her all about the book while she was writing. He did not seem to care and she even said that he seemed to be a bit more settled and happy while she was there and she thought getting him into play therapy was a good idea. In the evening, we went to grab dinner and then to hit the local Kohl's during tax-free weekend. We found several good deals, so it was a productive trip.

Saturday - Doug's parents wanted to come down for a visit and we skipped riding lessons for their visit as Nicholas cried last week when he was on the horse. We figured he could use a bit of a break. They came down, but were running late as they stopped at JC Penney and it was a zoo due to the tax-free weekend. What should have been a quick trip in and out took them forever. When they made it, they took us out to Chuck E. Cheese and Nicholas was in HEAVEN! He ate some pizza and played with Daddy and Papa while Uma and Mama sat with Nathan and looked through pics from their Ireland trip. After that, they asked us to come to a birthday party for a friend of all of ours and we took an impromptu trip to Magnolia to show off the kids, visit with friends we had not seen in 18 mos, and eat BBQ. It was a lot of fun and we all had a great time!

Sunday - We went to church and stopped at Sam's after that and then went to another Kohl's near the church and 2 Targets to take advantage of the tax-free sales before the day was over. Once we got home, we crashed and relaxed the rest of the day. After battling the crowds for all that shopping, we sure did need that!

Monday - We had back to back DT sessions for both boys and Nathan was so worn out, he fell asleep as soon as she was done with him and Nicholas had a blast playing with her and his train set and reading some books. He went to time out once for his aggression with Nathan while she was working with the baby and I think it was because he did not want to share her with Nathan. Afterwards, we went out for Mexican at lunch to meet his godmother. It was a lot of fun and once we got home, he went for his nap and woke up to a storm that was flooding our street again. Doug made it home in the car about a min or 2 before the street was so flooded it was impassable. A poor girl got stranded in our driveway for a while as she waited for the water to subside. Luckily, no cars of ours or a relative were flooded during this storm!

Today - We woke after sleeping in and ran through the Mickey D's drive thru to make a lunch run for us, the boys' godmother, and some of her coworkers. We went to her school and had lunch with her again and she showed off her godsons to everyone, just beaming the whole time! We left when she had to make a presentation and came home for a nap. The rest of the day today was same-o same-o.

Guess that is about all for us now. We updated the pics since it has been a while. Hope you enjoy them. Take care and God bless...we are glad to be back!


Melody

Monday, August 8, 2005 12:43 AM CDT

Hi, this is Doug. I am going to be brief since I am at work. We have no internet access at home right now because there is a problem with the server that we are on. Once the problem is corrected, then the updates will resume.

Everyone is doing well right now.

Take care and God bless!
Doug

Monday, August 8, 2005 12:43 AM CDT

Hi, this is Doug. I am going to be brief since I am at work. We have no internet access at home right now because there is a problem with the server that we are on. Once the problem is corrected, then the updates will resume.

Everyone is doing well right now.

Take care and God bless!
Doug

Thursday, August 4, 2005 9:57 PM CDT

We went to visit my sister today and went to Old Navy to hit a GREAT sale! I got Nicholas a pr of jeans for $2.97 and 2 pr of a different style of jeans for $3.99. I ended up spending $11 and some change for 3 pr of boys jeans! That had to be the deal of the century! It amazes me that a pr of toddler jeans, with barely any fabic can be upwards of $15! It is insane!

We got back to her house in time to fix lunch, eat (for me, quickly!), nurse the baby, and get on out of there to take Nathan to PT at TCH. We had to tell our PT there, who is really sweet, that we will only be back one more time before we have to stop going so we can change therapies over to ECI. She was disappointed as she obviously likes working with Nathan, but totally understood and felt, after talking with me, that we were in very capable hands with the new PT. Nathan has gotten to be very opinionated about things lately. He was protesting loudly about the stretches she was trying to do and fought her tooth and nail when he did not like it. He also has a very specific taste in therapy toys and will stare entranced at some and look at others once and will avoid looking at it ever again. It is almost like he is rolling his eyes and thinking that he is wasting his time on that particular toy. He found another one he loved today and I am in the process of looking for it as I am not sure what we are going to do for therapy if we do not have toys that will hold his attention. We already ordered one set of blocks he loves from the first therapy session and they arrived a few days ago. The most recent toy will be purchased soon. My mom said it is a good thing that we are not going back for therapy many more times as we are going to be having a hard time affording all the new toys we are going to have to buy!!

We found Nicholas a new Baby Einstein book about feelings and he seems to love it. I hope that it will help him to learn the feelings more easily as it is a BE book which he loves and he will be able to have a longer attention span with it than any another type of book. Fingers crossed...

Tomorrow, I am really hoping we actually make up that missed DT session as this is already the 3rd reschedule and I really do not want to put it off any longer. She should be here in the morning and we will have the rest of the day to relax. Look for an update tomorow!

That is all for today. Take care and God bless!


Melody

Wednesday, August 3, 2005 10:44 PM CDT

This morning we went to the library. Nicholas always enjoys that so much and I think it is one of the highlights of his week. He always has a smile on his face the whole time we are there and it makes my heart happy to see how much he likes going and how happy it makes him.

I tried to get him into bed for a nap at a decent time as the child psychologist was coming out to see him again and I did not want for him to be overtired. I got him down by 2:00 and he played quietly and did not fall asleep until 3:20. He had to be up by 4:15, so you can tell the kind of mood he was in when he awoke. I went in to get him and he was already up as he had a dirty diaper and it woke him before I came in. He was overtired and the rest of the afternoon was not great. He spent 2 trips to time out in the corner while she was here and he was not the most cooperative either. I guess she got to see him not at his best and maybe that was a good thing...who knows... She decided that he is in need of some play therapy and will be coming out to the house 2x/mo to work with him. He needs to learn about emotions so he can express himself a bit better. He already told us today that time out makes him cry and he is sad. She was glad he is sharing, but also told us to make sure he still goes there as it is punishment and we cannot let the discipline slip just because going there makes him sad. She complimented us on what a good job we have done with him discipline-wise, so I felt a whole lot better about things when she left...like maybe we ARE actually doing something right. I just want him to be happy and adjusted to the things that he needs to get used to. It hurts me to see him acting out like he does and show all this aggression...it is just not like him at all. I hope she can help him....

We went out and bought him a new Baby Einstein book tonight and he is walking on cloud 9 because of it! He LOVES Baby Einstein! We are also looking into investing into a couple of books on emotions so we can work with him on learning the different feelings so he can use those to let us know how he feels. I sure hope it works. He was ok with talking about happy to her today, but every time sad came up he was suddenly done with whatever we were doing. I wish I knew what he was thinking...

Tomorrow we go to see my sister and Nathan has PT at TCH. hope he has made some good progress this week. We have been working with him like we have been told to do, so I hope it is working!

Take care and God bless!


Melody

Tuesday, August 2, 2005 8:55 PM CDT

I am so glad we had NOTHING to do today! It was SO nice to be able to relax and not worry about who was coming, where we had to go, what time something was coming up, and making sure Nathan was fed beforehand. We just got to relax, kick back, and just take the day as it came. We played a lot...Nicholas is getting to be SO good at puzzles. He put together all of his board puzzles by himself and named all of the pieces or picked out the one I asked him to find and also located the spot where it belongs by matching the pictures. He impresses me with all he has learned. As a 2.5 yr old, he knows almost all his body parts, the major colors and shapes, he can sing the ABC song, he knows a ton of animals and the sounds they make....he even has 2 books where he will point to the word on the page and, after looking at the accompanying picture, will be able to say the word he is poining to. Ok...mommy bragging over!

Cognitively there is surely NOTHING wrong at all....but sometimes this is a blessing and a curse. He is using those smarts to get in trouble sometimes. Today we hit on a way to eliminate the screaming in the house, which has gotten to be very annoying. I told him if he wanted to scream, he had to go outside and he could scream all he wanted to. He thought this was a brilliant idea, so he went out on the patio in the backyard and screamed for almost 10 min. He had to give up the binky first though, as you do not need it while screaming...and since we were fixing dinner, he went out onto the patio by himself and we watched him through the glass doors and Doug was going in and out several times during this to check the grill. The fist time, it was a novelty. The second time, he went out and screamed 3 times before asking to come back in. The third time, he answered NO when we asked him if he wanted to scream and would not go outside. I guess giving up the binky and going by himself with no audience and nobody fussing at him either is not that much fun after all and it lost it's luster really fast! I hope it keeps on working...at least if he DOES want to scream, he can do it in a safe place with someone watching and not indoors (which is what we were trying to break anyway). Luckily, the glass doors take out a lot of the noise! Maybe us saying NO to him all the time made it all the more appealing and by us allowing him to do it to his heart's content, he decided it wasn't "all that" after all. Kids are too funny....

And now...for some GOOD NEWS.....

I FINISHED the chairs today!! After ONLY 4 coats of stain, 4 coats of polyurethane spray, and 10 days....WOOHOO!! I am super happy...and they look pretty good as well, if I do say so myself. I will be glad to put the car back in the garage as well...it had been kicked out to accomodate the staining and drying of the chairs all this time.

We have appts, therapies, etc for every weekday left this week. Look for updates every day for that day's activities! I am getting done early tonight, so maybe I can get to bed at a decent hour for a change! Take care and God bless!


Melody

Monday, August 1, 2005 11:46 PM CDT

Wow...is it really August already?? Seems like the summer just started! That also means just 1 month exactly until we leave for Johns Hopkins, too!

Well, Nicholas' DT called this morning and said she was under the weather today and could she reschedule? So, we have now moved the make-up that was scheduled for today to Fri morning instead. Maybe one day we will actually get this one done!

The PT did come by for Nathan today though and she gave him a really good once over before deciding that he does in fact qualify for services. I figured as much and was not at all surprised by that. She noticed the same things that the PT at TCH had noticed and also shared that although both hamstrings are tight, the right one is tighter and his right hand is more tightly fisted than the left one as well, so he is seeming to have more tightness on the same side of the body as his muscle tightness due to the Torticollis. Interesting.... She also noted that his breathing was very shallow and be barely moved his belly at all while breathing and she thinks he may have a weak diaphragm as well. His ribs are flared out more than they should be as a result. This should resolve as his muscle tone improves. She seemed really nice and will be coming out 2x/mo to see him and that will be on alternating weeks as his OT comes out so that he will be getting therapy once a week for this. We are going to have to drop the PT through TCH however, as they cannot see us if he is getting private therapy. That is fine with me as therapy through TCH is expensive and ins only covers 10 sessions per year anyway. We will go to TCH for 2 more visits until the PT through ECI kicks in on Aug 16. That way we can maximize his therapy and hopefully speed up getting him off his head and strengthening those muscles that are weak.

The rest of the day was pretty laid back....lunch, nap for all 3 of us, snuggling in bed and watching A Bug's Life, Nicholas helping me fix dinner, eating, making a grocery store run, and I also have sprayed 2 coats of polyurethane on those chairs for the boys. That means they are ALMOST DONE!!!! WOOHOO....it is about time!!!

Guess that is about all for us today. Hope all are well! Take care and God bless!


Melody

Sunday, July 31, 2005 9:59 PM CDT -Happy Anniversary Jon and Michelle!

Sorry for the lack of update yesterday...things got crazy around here!

We crammed in a lot during the day...Nicholas' riding lesson, back home for naps for the kiddos while Doug mowed the grass and I applied coat #4 (yes FOUR!) of stain to those chairs. My parents stopped by to drop some things off and we both grabbed showers before I went for a haircut and Doug took the boys to pick up their godmother and measure her storage unit to see if our mattresses will fit. They came to pick me up and all of us went to Katz's Deli downtown to eat. We got back home after 9 and had a long night as Nathan was being a stinker and not wanting to sleep in the crib. Finally, at 2:30 and no sleep, we relented and brought him to bed with us and were able to actually get some sleep.

Today, we cleared out the guest room and my sister came with her boys in my brother-in-law's truck to help us move the mattresses, headboard, and bed frame over to the storage unit. My parents came over to watch the boys while we were gone and we actually got everything in there (with quite a bit of rearranging). Whew! What a day!

Tomorrow, ECI comes out to evaluate Nathan for PT and Nicholas has a makeup session with DT. That is the major thing on the agenda for the day. We should have an update on that tomorrow night. I am beat and ready to hit the hay! Take care and God bless!


Melody

Friday, July 29, 2005 10:10 PM CDT

We had a fun and informative day. The boys' godmother came over and we headed out to the mall. We had a yummy lunch at Johnny Rockets, found some great deals on shoes and a couple of outfits, and had a tasty snack at the cookie place.

When we came home, we put Nicholas down for a nap, tidied up, and fed the baby and the psychologist came early for her appt late this afternoon. Nicholas was still sleeping, so Doug and I used that time to talk to her and share what we were concerned about and answer her questions. Seems like, after about 2 hrs of discussing him, she seems to think he has a lot of stress right now...that he is very smart and his brain is probably functioning above his vocabulary and he understands a lot of what is happening, but does not have the words to effectively tell us what is going on in his head and how he is feeling. This only adds to his frustration and stress. She is coming back again next week as she wants to spend some time with him one on one and see what else she can learn. In the mean time, we are to start working with him on learning the different feelings, so then he can start relating the feelings he is learning with what he is currently experiencing and can better talk to us about things. I am, overall, happy with how things went and I am glad I went with my gut that something was not right and followed through with getting him some help. I am just so tired of seeing him struggle.

We had to reschedule Nathan's neuro appt as the dr will be out of town the day we have the appt scheduled. Our new appt time (unless they have a cancellation on Mon before she leaves town) will be on Aug 29. I am not thrilled with this as I really did not want to pack in a lot of things right before we leave town for JH and I kind of wanted to isolate the boys so they won't get sick before we leave, but I am not waiting too long to get him in to see them either. I am praying for a cancellation Mon afternoon. As long as they can give me 1 hr notice, I can be there. We will see I guess....

We are having to take Nicholas off his appetite stimulant for a few days again as his body is becoming too used to it and it is no longer effective. Hopefully the break from it will allow it to be effective once again. Much as I hate to take him off it as I know he won't eat a thing, he has barely been eating enough lately anyway, so it needs to be done. Todays intake consisted of no breakfast (as he is still full from the overnight feed), 1.5 french fries and 2 bites of grilled cheese for lunch, 3 bites of a sm. cookie for a snack, and about 6 bites of taco and 1/3 of a Dora ice pop for dinner. No wonder the kid is doing so miserably trying to wean from the tube. Ugh...

Tomorrow, we MIGHT be able to go to riding lessons. We have our fingers crossed. Hope all are well. Take care and God bless!


Melody

Thursday, July 28, 2005 11:49 PM CDT

well, Nathan had his first official PT session at TCh and he did FABULOUSLY well!! He was so laid back and tolerant, he endured almost an hour of poking and prodding. He just lay there and flirted with the PT the whole time and she just ate it up! He learned from the flirting master...big bro Nicholas! He propped up on his elbows for almost 3 min or so and did so well! She decided he DOES have Torticollis and gave us some stretches to do. She also discovered that due to his arching and tilting back of his head, that he has stretched the muscle under his chim WAY out and has basically no muscle tone at all there. She gave us some exercises to do with him for that, but she has to modify them big time as the basic ones were too intense for him just yet. We will work up to those eventually when he gains a bit of the tone back. He has very tight hamstrings as well and we have more stretches to do with him for those as well. She took head measurements so we can monitor his head flattening. < .3 is good, > .5 is bad (meaning needs a helmet) and .3-.5 is gray area. Nathan measured .4. so he is right there and could go either way. I am glad it is not bad yet, but I am sad that he is that close to a helmet. Only time will tell for this.

Tonight we went to the boys' godmother's pool and visited with friends, swam, and ate pizza. We had a blast and only got out when it was getting LATE and there was lightening in the sky. Tomorrow, she wants to take them for a cookie at the mall. That should be fun. We will be back before the psychologist comes for him in the afternoon. I will let you know how things go when I update tomorrow.

Take care and God bless!


Melody

Wednesday, July 27, 2005 9:21 PM CDT

Well, so much for our illness-free streak! Nicholas woke this morninng grumpier than usual. We went to the library and he was acting pretty normally, but kind of drooped once we got home. I felt his head and he felt warm and sure enough, when I took his temp, he was running fever. Nathan has been fussy for such a laid back baby and I wonder if his fever is from the vaccines, or if it is from whatever bug Nicholas has. I am assuming that this is from the trip to the ped for Nathan's appt on Mon and I am also assuming it is viral as neither of the boys are exhibiting any symptoms as of yet. Oh, joy. I am unsure of we will be making the trip to visit my sister tomorrow like we had planned and we will see if we will be able to take Nathan for his PT at TCH as he is running some fever, too.

I got a call today from the PT through ECI and she is going to be coming to see Nathan for an eval on Mon morning at the same time that Nicholas' DT is here to see him. That will be good because if Nathan does qualify for the PT also, we can add her in to his therapy grid right then and there as the DT will be there also. I am hoping we are going to have this all straightened out here very soon.

The rest of the day was pretty laid back, trying to get both boys to take it easy and rest. Nathan was pretty easy, but Nicholas never stops for a minute. He is like the Energizer bunny and it takes an act of God to make him slow down. He slept for longer than 2 hrs for a nap though, so that lets me know that he is feeling a bit off, even if he swears to me he is feeling "okay" and not "yucky" when I ask him. Maybe we will be lucky and he will wake fever free tomorrow....we can always hope, right?

Guess that is about all for our boring day here. Take care and God bless!


Melody

Tuesday, July 26, 2005 11:58 PM CDT

Oh my goodness! This day was full of confusion! The morning started out with Melody getting a call from Nicholas' OT saying she could not come see Nicholas at 11:30 unless Melody could call the ped's office and get them to fax over a prescription for Nicholas' therapy. After a few calls, we luckily had it taken care of. Melody was confused as she thought the DT was coming today, and she figured she messed up on the dates. Nicholas had a good therapy session, but the OT, too, noticed that Nicholas' behavior was not as it usually is. She expressed concern over it as well. In the middle of the session, we had a surprise visit from the boys' godmother. When Nicholas opened the door, he stood there speechless like he could not believe she was standing there. He was so excited to see her! When therapy was over, they all went to lunch together and had a nice time. Once they got back, Melody got a message on the answering machine from the DT saying she heard from the OT that they went to lunch and she would reschedule for another day. It turns out that Melody was right that the DT was coming, and who knows why nobody knew the OT was coming. I guess we will just chalk it up to new baby sleep deprivation! Luckily it all worked out and we will see the DT on Monday. Melody was joking to her sister that she needed a palm pilot to keep all these appointments and therapies straight. Her sister joked that she has a barely used one to sell. We are now looking into buying it from her. Hopefully it will help!!

We got a call from the ECI staff psychologist and she will be able to see Nicholas on Friday for a consult. Hopefully she will be able to give us insight, help, or some useful tricks...anything that will help us help Nicholas. He is having such a difficult time these days.

We heard back from the ped's office about Nathan's skull x-rays. The preliminary report said things looked "normal". Not sure exactly what this means as there was no explanation, but we are assuming that it has ruled out anything really serious. We are unsure if they can diagnose plagiocephaly (flat spots and bumps on his head)from this or not. If we get more information on this, we will let you know. He is scheduled to see the Neuro on 8/15, so I am sure we will have more information then.

Guess that is about all for today...I think that is enough!! Take care and God bless!

Doug

Monday, July 25, 2005 9:51 PM CDT

Well, it sure was a long day, that is for sure! Nathan had his 4 mo well check today and did really well for what he went through. His weight was 12 lbs 12.5 oz/25th %ile, length 24.5 in/50th %ile, and his head circ was 14 in/10th %ile. He stayed on the same growth curves for all areas (something we are NOT used to from Nicholas!). He got the good once over and the ped was concerned about his head. He still has the large flat spot on the one side, another one developing on the back, and a bump sticking out over his left ear. He wanted us to get skull xrays and also referred us to a neurologist for a consult. Nicholas was on a tear as he is used to being the center of attention at dr appts and apparently does NOT want to share his docs with ANYONE. He made it so I could barely talk to the ped as he was so noisy and he was pouty and upset when I could not hold him and the ped could not spend all his time on him. We talked some about Nicholas and the ped, after hearing me out and seeing Nicholas' behavior while we were there, was concerned, too. He wants us to make another appt to come in and speak about that issue another time, preferably after we go to JH (not sure why tho).

We went for the xrays and I had to call Doug to come and stay with Nicholas as they would not let them both go back with me for the xrays and my parents were unreachable. Nathan screamed badly for the shots, but the xrays were SO much worse. They had to take 4 different views and he moved on 2 of them and they had to redo them. Poor baby! It took forever. We were in and out of the peds office from 10:45-11:30 and were at the radiology dept from 11:30-1:00!! By the time we left, both our nerves were frazzled and we were starving. I also had a screaming headache by this point between Nicholas' constant fussing and Nathan's crying. We grabbed Mc Donald's before Doug went back to work and I took the boys home and collapsed. We got back here after 2:30!

Since they did not do the stat orders on the xrays, we have not heard back from them yet. Nathan is scheduled to go to the neuro on Aug 15. Guess that is about all for our appt today....Not much else to report beyond that. Doug and I are off to put another coat of stain on the chairs before we go to bed now that Nicholas is down for the night, and Nathan is exhausted and sleeping off his shots. Please cross your fingers that this is the last coat!!! We will update on the skull x-rays when we hear back from the ped. Take care and God bless!

Melody

Sunday, July 24, 2005 8:33 PM CDT

Well, we found a new stain color that was MUCH better than the pinky-red one we had from yesterday. I just hope we can cover it dark enough to cover the red tone that is still there. One coat has not done it yet. We found a very dark black-brown oil based stain that seems to be right. Our kitchen table is an antique as are the matching chairs and they are the really dark stain of antique furniture....and very hard to match modern stain to! Our garage really stinks and I am looking forward to finishing this project up! Nicholas is too, as he is very anxious to use his new big boy chair!

Other than that, today was pretty laid back. Doug installed the outdoor light and replaced the totally ugly and broken down floodlight that was builder installed with the house. It is a really pretty carriage light type fixture in white with sculpty designs on the side and top like the fans that were installed, so they all look like they were meant to go together. I am really happy with how it looks!

The big boys are getting haircuts tonight and Nicholas is finally able to get through a haircut with no screaming, crying, sobbing, bribes, or outbursts. YAY! I think he has figured out that the less he complains, the faster it goes. Now, I just wish he did not want to dance to Baby Einstein while I am trying to cut it! Doug will get his before we go to bed.

Guess that is about all for us today. Tomorrow is Nathan's 4 mo well check. We will update to let you know how big he is getting! Take care and God bless!


Melody

Saturday, July 23, 2005 11:40 PM CDT - Happy 4 month birthday Nathan!

My baby is 4 mos old today! It hardly seems possible! Wasn't I just pg last week? He is growing up WAY too fast! We go for his 4 mo checkup on Mon, so we will see how much he has grown. He is doing really well and the med change from the last GI appt seems to really be agreeing with him! He is a happy smiley baby and, since we missed all the smiling while Nicholas was a baby (he was in pain and miserable), we are REALLY enjoying this stage immensely! He has started laughing as well and we are LOVING it! He is such a little sweetie!

Today, the horse riding was closed, so we did not get a lesson. Probably for the best as it was raining on and off all morning. We headed out to the unfinished furniture store to buy a little chair for Nicholas to use at the dinner table. It is like a little child-sized seat on really long legs so he can sit at the right height at the adult table. He loved it! We bought 2 as we feared not being able to get one or a matching one when Nathan is big enough to use it. They wanted almost as much as the chair cost to stain it, so we decided to do it ourselves. Not sure this was a good choice, but we got the first coat of stain on and are not happy with the color. We need something darker, so we will be on the hunt tomorrow. We have an antique table and chairs, so the color is very dark and will most likely be hard to match. Oh, well. We will try. We also found some little chair pads to fit them as well, so they should be really comfy, too.

We grabbed dinner at Freebirds world burrito tonight and anyone familiar with them knows what a treat that was. It was Nicholas' first taste of one and he seemed to like it. He also got his first pair of Nike tennis shoes tonight as we found a cute pair on the clearance rack for only $15!

That is about it for us today. Hope all are well! Take care and God bless!


Melody

Friday, July 22, 2005 8:56 PM CDT

We had such a nice relaxing day today! We laid around in our pj's, watched Toy Story snuggled together, ate a picnic in front of the TV watching Little Bear, and played. We all had a nice long nap, even though I did not sleep. Nathan is going through a growth spurt and is sleeping all the time these days! He turns 4 mos tomorrow and we go for his 4 mo check up on Monday. We will see what kind of growth spurt he has had.

Nicholas got to help Big Andy this morning take his medicine and he also helped me hook Big Andy up to his tube for venting and some medicine. He seemed to be really happy with the idea of Big Andy getting the medicines and hooked up to the tube, too. He thinks it is pretty cool that Big Andy has a feeding tube like his and I sure hope that this helps him be able to cope a bit better with things. So far it seems to be working, but the big test will come when we try to change out the button and see what happens. I hope it helps.

That is about all for now. Take care and God bless!


Melody

Thursday, July 21, 2005 10:49 PM CDT

What a crazy day!

We started out by meeting my sister and her boys at the library for baby storytime. Everyone had fun and we played and visited. After we left there, we met another friend and her 2 boys for lunch at the mall. We had fun there too, eating and visiting and did a bit of browsing/shopping afterwards. We came home and put the boys down for a nap and my parents came over to pick up something from my sister and to drop off some sewing my mom did for Nathan and my younger nephew. We had a nice visit with them as well and my mom worked on a special project while they were here. She had already fitted a pair of pj's to Nicholas' Raggedy Andy (dubbed Big Andy as he has a smaller Andy and this new one is bigger). She cut a tiny hole in his tummy and sewed the edges to keep it from fraying and we put a g-tube button in the hole, just like on Nicholas' tummy. When he saw it, he was so surprised to see his toy had a feeding tube just like his! I hope this will help him talk through things and also maybe lessen the anxiety of button changes as he can watch Big Andy get his button changed first. After my parents left, my sister heard that her hubby had to stay late at work again, so she stayed and had dinner out with us. When she left, we ran to WalMart for a few things and are now trying to unwind before bed. Whew! I am beat! Tomorrow should be pretty relaxed and laid back as we have no plans that we know of to take care of.

Guess that is all! Hope all are well. Take care and God bless!


Melody

Wednesday, July 20, 2005 11:38 PM CDT

Nathan had his IFSP meeting today with ECI to arrange for therapy for him. The OT really wants him to have an eval from PT ASAP as she thinks he needs services in both areas. She thinks he needs to be seen once a week for OT/PT and he will be getting DT 2x a month.

His scores were the following (he will be 4 mos on Sat)...

Cognitive - 2 mos
Expressive Communication - Birth
Receptive Communication - Birth
Motor - Birth
Social/Emotional - 2 mos
Adaptive - Birth
Hearing - they think is ok, he startles at loud noises
Vision - not sure as his tracking is VERY poor and he does not want to look from one item to another, if he even looks at the first one at all

Therapy is supposed to start in the beginning of Aug. He will have the same OT and DT as Nicholas does and we really like them both.

We also talked about Nicholas as these are also his therapists and they are recommending he get a psychological consult ASAP as they think that he may be suffering from Post Traumatic Stress Disorder and think that this needs to be addressed before we go to JH in Sept, and I agree wholeheartedly. He just keeps getting worse with acting out, some aggressive behaviors, and his sleeping has been fraught with frequent wakings and what we believe are nightmares that he wakes from screaming. I know we have gone beyond what is age appropriate behaviors and agression and I do not want to punish him for having these feelings and acting out because of them after all he has been through. He needs some help to deal with his fears and feelings and we need some instruction on HOW to help him. They are valid feelings and need to be addressed. That is about all for the meeting today.

We went for toddler storytime and that was a lot of fun. Nicholas enjoyed himself and he finally played catch with me! He threw me the ball for the first time and actually caught it twice himself! And, once we got home, he ate 2 spoonfuls of butter soaked Ramen noodles all by himself with no bribery or coaxing from me! We had some cool breakthroughs with him today and he was super proud of himself!

Tomorrow my sister comes for a visit and we are going to the baby storytime and maybe to meet a friend for lunch so my sis can see her new baby. We will see....

Take care and God bless!


Melody

Tuesday, July 19, 2005 11:42 PM CDT

YAY!!! The cast is off!!! Nicholas was a trooper even though the saw scared him to death. When the cast came off, he looked down at his foot, wiggled it around, and said, "It's fixed!" The Ortho did a second round of x-rays to make sure it was healing properly and discovered there were in fact three breaks instead of two like we previously thought. The third break that was missed was on the middle toe down on the foot and he knew it had been broken because there was evidence of new bone growth. Leave it to Nicholas to do everything in such a big way! We did not get to keep the cast, but did get to keep the cast shoe. Glad that's over with!!

Today, Nicholas' DT came, and he had a great session with her. He always enjoys it when his therapists come to play. Tomorrow is Nathan's meeting to set up services with ECI. Once we see what he is eligible to receive through ECI, we will determine whether or not we want to continue therapy through TCH.

We did not make it to the library this morning as the appointment ran late, so we will try to get there tomorrow instead. Guess that is about all for us. Hope all are well. Take care and God bless!

Doug and Melody

Monday, July 18, 2005 11:33 PM CDT

Today was a laid back day today...we relaxed all day in our pj's, played, ate, took a long nap, and watched a Bug's life! It was a nice, quiet day!

We heard back from the ped's office finally about the vit D and calcium levels. His was 58 on a scale from 25-75...right smack in the middle! I guess the broken bones are more from rough play than calcium deficiency. I am glad to know for sure though. I guess that means I need to get used to having a boy (or 2!!)!

Tomorrow, we go to hopefully get Nicholas' cast off! He is surely going to get a serious scrub down tomorrow night as, from personal experience, his leg is going to be stinky and dirty and he has not had a proper bath in days because of the cast! We also have an appt with his DT to make up the session she missed last week due to a death in the family and we might even make it to storytime if we are lucky and the ortho appt goes fast! We will see...

Guess that is about all! Hope all are well. Take care and God bless!


Melody

Sunday, July 17, 2005 11:02 PM CDT

I am FINISHED! Doug very graciously took over the care of the kiddos this morning so I could finish reading my Harry Potter book. I was able to read the last page around noon today. It was really good, but not at all how I expected it to end. I am VERY curious now as to how she is going to proceed with the series, if at all. Who knows? I will be interested to hear if she plans on writing more installments as, in my opinion, it is not finished yet!

We had a long night last night. The house alarm went off at around 3:30 scaring us to death and making it a very panicky time for a few minutes until we had our bearings and tried to figure out what was going on. Doug got the alarm turned off and called the alarm company, who gave him instructions on how to reprogram the keypad. After a little bit of this, they helped us discover it was more problems due to the low backup battery we already knew about. The trouble light has been on and off for about a week now and I had been pestering Doug to call about it. When he finally did, they helped us figure out it was a low battery from the last power outtage. The night before last, we had a problem with the smoke detector in our room going off at about 6:00 am for no reason whatsoever and that was tied into the low battery problem, too. Now, we have also learned that the battery being low causes the alarm to malfunction until it is changed, so we could not use it until it was replaced. Maybe this is all to get our attention? Who knows, but it sure caught ours alright! We finally made it back to sleep last night after Doug did some heavy duty door and window checking...just to be sure! We got a new battery from Radio Shack this afternoon and are now up and running smoothly, thank goodness. I hope this is the last of our middle of the night wakings!

We were so tired from the excitement last night that we opted to miss church this morning. We have been so overtired from having a new baby and a demanding toddler that we have had little sleep lately and it is starting to take it's toll on us and we are run down, feeling blah, and hoping not to get sick. We also did not want to be rude and get caught falling asleep in church either! We got some much needed rest and are feeling slightly better. The craziness of last night sure did not help us with the sleep problem AT ALL!

We ran a few errands today and replaced the fridge water filter, got a new alarm system battery, found a good sale for some summer clothes to put away for next year, and got Nathan some walking shoes (on a fabulous sale) that he should be fitting into soon. We picked up some take out on the way home and are now hoping to be in bed SOON!

I am hoping that we will have the vit D results from the ped tomorrow, so I will update if we hear. Other than that, not much planned for the day. Take care and God bless!


Melody

Saturday, July 16, 2005 11:20 PM CDT

My new Harry Potter book is here and I have spent the second half of the day engrossed in it. I am a little over halfway finished with it and it is good, but much darker and more evil-feeling then any book so far. I am hoping to have it finished tomorrow night!

It rained this morning, so we were unable to take Nicholas to riding lessons...one because of the rain and two because he cannot get his cast wet. Instead, we went to Home Deopt and attended their kid's workshop and made a flowerpot holder that looks like a birdhouse and planted daisy seeds in it. Doug made one for Nathan and I helped Nicholas with his. After that, we ran a couple of errands, and then stopped at Toys R Us to go to their Camp Geoffery. Nicholas got to make a paper bag puppet of Grover and it is adorable. Finally, we stopped by my parent's house on our way home to pick up my early birthday present...the new Harry Potter book! I have been reading it ever since, with the exception of dinner and feeding the baby! Doug has been doing well caring for both boys this afternoon and evening and I think he is getting an eye-opening look at what it takes to care for 2 little boys, even though I am here to help if needed! I hope he survives tomorrow, too!

I just wanted to take a minute to thank all of you who have been praying for the 2 families we know who have lost loved ones. I know how much they have needed them and how much it means to me to have you praying on their behalf.

Take care and God bless!


Melody

Friday, July 15, 2005 11:47 PM CDT

Wow! I am LATE in updating tonight!

Today was a pretty easy day! We finally have a hotel booked. Doug called and laid the sob story on thick to the general manager of the Hampton Inn there by the hospital and she gave him a GREAT rate and we will have a guaranteed fridge too as they have one in every room! I am SO relieved!

Still no word on Nicholas' blood work and I am not too happy about that one. I hope it will be in on Mon! Nicholas is back to dumping again and we are going to keep an eye on it and call the GI back on Mon and let him know how things are going. If he is still having loose stools, we will most likely have to collect a stool sample for testing to make sure he does not have a bug.

My mom came over and we did some cleaning and laundry, as well as some visiting, playing, and eating! It was a fun day and we had a good time!

The Harry Potter book comes out in 5 min!!!!! I am SO excited! I have been waiting forever and my book is coming in tomorrow!!! I will be VERY busy this weekend with my nose stuck inside the latest installment of HP!

Hope all are well! Take care and God bless!!


Melody

Thursday, July 14, 2005 10:15 PM CDT

We had such a good time at the library this morning! We got to see a lot of our friends who had their second babies around the same time we had Nathan and they all have their older children around the same age as Nicholas, too. The older kiddos had so much fun playing and the mamas sat and chatted with the babies. Nathan liked the library as he actually stayed awake the whole time today and did not cry while we were there, so he was able to enjoy everything for a change!

We had to rush back and eat in a hurry as we had Nathan's ECI eval this afternoon. This time, they did a global eval instead of just looking at his head/neck and I was surprised (but not really after Nicholas' surprises...I am getting used to having those now) that he has some delays in other areas, too. He scored at the birth level for gross motor, which I was expecting, and also birth for communication as well. Everything else he scored at a 2 mo level across the board. He will be 4 mos on the 23rd of this month. He definitely qualifies for services through them. After they left, my dreams of having the "perfect" and "healthy" child were dashed. I had a small pity party and now am over it and ready to deal with this and get it taken care of.

The rest of the day was pretty laid back...naptime, watching a Bug's Life, dinner, bath, and bed. Nothing exciting or interesting at all really! Sometimes there is nothing wrong at all with that kind of time!

We have been trying to book the hotel for our trip and most places cannot guarantee that we can get a fridge. I am disappointed as we need one for meds and formula for Nicholas. I am frustrated and at a loss as to what we are going to do if we cannot get this all to work out. Oh, well. I cannot stress over this too much. We still have some time yet, so I am hopeful things will work out for us eventually.

Anyways, please remember both our friends and their fmilies in your prayers. Each of their loved ones are now laid to rest in those familes and I have learned today of another friend who lost a loved one as well. It weighs heavily on my heart that there has been so much loss lately. I know how much everyone appreciates the prayers you are giving for them and I truely appreciate the time taken to ensure that these friends are well watched over. Thanks, everyone. Take care and God bless!


Melody

Wednesday, July 13, 2005 11:52 PM CDT

I have to say....I am shocked, amazed, and disappointed at what some businesses will do to make a buck off people travelling out of state for med treatment and eval. It is a sad statement on the human race that people will take advantage of even the sick seeking treatment to worship the almighty dollar! Ok...now that I have that off my chest...

Today was a nice day. We went to storytime at the library and Nicholas had a blast! We have not been for a couple of weeks and he has missed it! Of course, everyone freaked about his foot. He is now doing so well on the cast, that if you did not see it, you would never know it is there! We met a nice mom there who is a nurse, has 2 yr old and 7 mo old daughters, and just moved here from out of state. She seemed really nice and will be at the baby storytime tomorrow, so maybe we will see her again as we are trying to go for Nathan in the morning.

We then came back for lunch, nap, and some quiet time before deciding on the spur of the moment to meet some friends of ours for dinner. This is the friend who we were visiting when Nicholas broke his foot and she wanted to show her son what can happen to little boys who jump on the bed! We had fun and it was nice to get out and visit and enjoy dinner!

Tomorrow, Nathan has his eval with ECI and we will see what they think is going on with him in regards to therapy and his neck and muscle weakness. I will update as soon as we have some info to share from that. Still no word on the Vit D blood test from Mon, but the urinalyis came back normal, thank goodness!

Guess that is all for now. Please continue the thoughts and prayers for the 2 families who have lost loved ones. One will be laid to rest tomorrow and that is going to be a terribly difficult day for the family. Take care and God bless!


Melody

Tuesday, July 12, 2005 11:22 PM CDT

Well, today was one LONG day! I must have spend at least 1/2 the day in the car! Nicholas pulmo appt went really well!! Lately, we have actually been able to only have to go and see him every 6 mos (which for us seeing specialists is a LONG time!), but he thinks Nicholas is doing well enough to only have to go once a year now!! I am so thrilled about that as it makes me feel like maybe there is a chance that one day, we will be at this point with ALL our specialists! I am surely not getting my hopes up yet, but I am optimistic that there is a possibility that this could happen.

We also got together with a playgroup for the last time as a whole group. 2 of the mommies and kids are moving by the end of this month and we had to get together one last time before they left. Nicholas had a really good time and it was good for him to be able to get together with a small group of friends.

Doug booked our plane tickets to Baltimore last night and he got them for a pretty good deal..under $200 for each one. A friend is going to try to get us a good deal on a hotel as she works for a hotel chain and is about to start a new job with another one. It seems like this may not turn out to be as expensive as we originally thought. I know it is going to be pretty expensive, but hopefully not as bad as it could be. It will be worth any price to me to do what we can to try and help Nicholas though. That is reason enough to me...

Tomorrow, we are doing NOTHING but go to the library for storytime and have FUN! Nicholas has been through a lot lately and I am sure it is taking its toll on him. I am sure one of these days, all these medically related issues are going to catch up to him and it is all going to hit the fan. I just wish so badly that this could all be over for him and he could know what it feels like to be a "normal" kid who does "normal" things...going to school with his friends, playing on the equipment at McDonalds without worrying about all the germs on it, potty-training, enjoying the food he eats and eating until he feels stuffed, once in a while trips to the dr, only having to worry about a ped and no other dr, growing tall enough to ride his trike, having the strength to play on the monkey bars, and the list goes on..... Anyway, enough of this pity-party.

Please continue to remember those 2 families who lost loved ones....one is now at rest and the other will be soon. The days ahead for them will be long and rocky. They sure could use the extra prayers right now. Take care and God bless!


Melody

Monday, July 11, 2005 8:13 PM CDT

We can never seem to have an average trip to the dr's office, can we?

The day started by a phone call from ECI therapy saying they had to cancel today and another one from Doug saying that the GI's office called with the results of the urinalysis and they looked great...BUT, we were also supposed to get a blood test while we were there. I thought so and had asked and the lady said she could get everything we needed from the urine sample. Doug asked her the same thing later and she told him the same. So, we left. Come to find out this morning she was wrong and now we had to go back to the lab and get labwork drawn. Grrr. Poor Nicholas. We could have gone in this morning, but the peds office had to wait for the GIs office to fax the orders over and they did not come in time for us to go this morning. So, we ate lunch and went afterwards.

We got there and everyone wanted to see Nicholas' cast, including his ped who was gone on vacation when all this transpired last week. They all also wanted to sign it and he got a lot of I LOVE YOU's on there! He is pretty wise now to what the lab room is for and started fussing the min we got in there. Nathan was fussy too and when Nicholas started wailing, so did he. It took me and a nurse to hold Nicholas down, the lab tech to stick him (twice even and it was NOT pretty!) and the nurse who takes the phone calls to calm Nathan down. Once Nathan stopped screaming, Nicholas calmed down, too. I swear they were feeding off each other! Nicholas did get a free frosty coupon for Wendy's and 2 stickers for his trouble. We were leaving out the main office door when the fun began......the fire alarm went off! They had to evacuate the entire building! Even though we were leaving, we still had to stand in the back parking lot away from the building. I guess it was a false alarm because everyone went back into the building before the firetruck even arrived. It sat for a min and then turned and left, too. What a day!

The rest of the day was not nearly as full of surprises! We came home, Nicholas and Nathan had a nap and I sat and enjoyed the silence for a little bit. Then, once Nicholas was up, all 3 of us watched Baby Einstein in our bed. Doug came home and mowed while I fixed dinner and now, we are enjoying some down time before bed. Tomorrow, Nicholas has a pulmonologist appt downtown in the med center and we are going to try to make it to a playdate near my sister's house across town after that since 2 of the kiddos and mommies are moving away this month.

Hope all are well and please continue to remember those we know, who have lost loved ones, in your prayers. We will update on the appt tomorrow! Take care and God bless!


Melody

Sunday, July 10, 2005 11:22 PM CDT

Today was mostly an average Sunday for us. We woke up and got ready for church. Nicholas actually walked into the nursery today without any fuss and started playing instead of the usual crying scene he has been making lately when we drop him off (that lasts all of 5-10 min after we leave until he realizes he would rather be playing).

After church, we ran to Gymboree and found nothing screaming "Buy Me!", so we went and grabbed lunch at Prince's, a really good burger joint, and then stopped by a different Toys-R-Us than yesterday's on the way home. I swear their green tag sales are the best! We found a couple of nice things to stock up the gift closet for boy birthday party gifts and found a backpack with a sleeping bag, flashlight, and water bottle for each of the boys and they cost less than $3 each! I was amazed!

We came home amd tried to take a nap, but a storm rolled in and the lightening was really bad and the power went off. The smoke detectors went off, beeping loudly, and Nicholas awoke from his nap shrieking in a panic from being scared by the loud, scary, unfamiliar noise, being in the complete dark (from the stormclouds), and the sounds from the storm. I went and got him and we all 4 laid in our bed and snuggled until the storm was past. It was really nice actually to be snuggling there with all our little family and not having any distractions from each other.

The rest of the evening after the storm was gone and the power came back was same-o same-o. Nothing out of the ordinary and definitely nothing exciting.

Guess that is about it for now. Take care and God bless! Please continue to pray for those families who have suffered losses. They still continue to be in need of daily prayers and support.


Melody

Saturday, July 9, 2005 11:02 PM CDT

We sure got a lot accomplished today!

First, we woke and went to Nicholas' riding lesson. They all freaked about his broken foot and cast! Nicholas was not in the mood for riding today and I think it is because he has not gotten to ride Beau, his favorite horse, the last few lessons. Beau has been losing weight and does not have the strength to walk kids around right now, poor thing. They are trying to fatten him up so he can get his strength back. Not an easy feat in this sweltering heat!

After we left there, we went to Toys-R-Us to pick up a few things we needed and Nicholas got to do their Camp Geoffery while we were there. They got to try out the new erasable line of products from Crayola and take home a coupon and samples of the crayon and marker. He had a lot of fun trying things out and coloring with them. He is going to be a righty for sure! We hit a great sale an left with the things we needed at a great price!

Then, we decided to drive around the neighborhood where we want to move when we can afford to upgrade to a larger house while we waited for the rain (FINALLY some rain!) to stop so we could safely get Nicholas in and out of our next few errands with his cast. Ahhh, to be rich and move there right now! Once the rain stopped, we headed to the bank to open Nathan's savings account and then to the grocery store for a grocery run.

We got home and Doug reminded me that I had a girl's night planned with some friends, so we put Nicholas down for a quick nap before heading out again. Since it was so far (near my sister's house) we all went so I could feed Nathan right before and right after dinner and maximize the amount of time I could spent with my friends. Doug took both boys by himself (gasp!) to Chuck E Cheese! He has never had them both by himself before and that was a tall order! He put Nathan in the front-pack carrier and that allowed him to have his hands free for Nicholas. After they ate, they started playing and Doug lost Nicholas up in the tunnels. Nicholas, realizng he was lost, started bawling! Several kids tried to help him as Doug had the baby and could not get up in there to help him and one guy was going to send his son up to help, but the kids up there already finally managed to push, pull, and drag Nicholas, bawling the whole way, to the slide and help him get out. After crying and clinging for about 15 seconds, he was ready and raring to go again! I do not think there is much that will slow him down for long!

It is late and we are ready for some sleep after this day! If you missed yesterday's post, that is where the update from the boys' GI appts is, so check journal history to read up on them if you missed it. Please remember the families we know who have lost loved ones. Take care and God bless!


Melody

Friday, July 8, 2005 11:16 PM CDT

We ended up coming back early due to my friend who we always meet for dinner feeling poorly and not up to meeting us this time. Ah, well...there is always Sept when we go back! Anyways, here is how the appts went...

Nathan - Still having refluxing issues and pooping a lot of acid, (when he actually poops) so we are changing from 1/2 Prevacid Solutab 1x day and .7 ml Zantac 2x day to 1/2 Prevacid Solutab 2x day and continue Zantac for a few days until the new dosage of Prevacid kicks in and try to drop the Zantac and see how he does. If it is not enough, back onto the Zantac in addition to the new prevacid dose and we will do an Impedence Probe to see the severity of the reflux. Continue the Miralax and see how pooping issues go...possibly do an emptying scan if the issues continue. Back in 2 mos. Nathan was the easy one!

Nicholas - Talked a lot about the trip to JH and testing he will have done. The GI wants antroduodenal manometry at the very least and possibly an emptying scan and impedence probe if the specialists there want them done. The manometry test is a 24 hr inpatient test (not looking forward to this one). Talked about whether or not the dumping is causing malabsorption issues and therefore problems with his bones (hence the broken foot) and he tested for vitamin d in the urine to check the mineral absorbtion and also ketones as Nicholas was very tender in the bladder area and he thought we should also test for a uti (ugh). Changed his formula from peptamen jr to peptamen jr with prebio and adding benefiber 1/2 tsp 3x day to food as he feels that the dumping is being caused by another bacterial overgrowth and he thinks these changes will help manage it better. He also did a rectal exam to check for impaction and found slight backup but nothing he cannot pass on his own. Nicholas was very offended by this test, but forgave him by the time we left and still hugged him and gave him a kiss. We also talked about the poor results we are having from trying to wean and he thought it would be best to leave him as is for now and wait until our visit to JH and see what they learn from the testing before making any further decisions about weaning. I was going to ask about this myself and I was SO glad that he suggested it first! So, we stay at 21 oz overnight. We also talked about bile reflux and the GI thinks that Nicholas more than likely has this as well. Nicholas was the tricky one...gotta love my little conundrum. Back in 2 mos.

The GI asked if he could sign Nicholas' cast before we left and Nicholas let him. He signed on it for Nicholas to heal fast and also said that Nicholas was one of his favorites. Can you tell how much we love our GI??

We got to do some other fun things before we headed back early. We stopped for some Gelato and it was SO good! It is Italian ice cream and so smooth and creamy! It was really yummy! We also stopped at a mall on the way out of town and found a couple of things to put away for later.

And, how about a Nicholas funny before I go? I have one! Today Nicholas had to do a urinalysis. Dh decided to try and be brave and go for the cup at first. Nicholas is not potty trained, but has peed in the potty a few times and on the floor in front of the potty a few times also. Well, he made it into the cup today....3x even as he was only going a little each time and they needed more. He was SO proud afterwards, that he ran into the waiting room of the lab, bare bottomed and onesie flapping around him and yelled "I GO PEEPEE IN THE CUP!!!!!" Everyone was rolling! But, it was so cute!

On that note, I will leave you all for the night! Hope all are well! Take care and God bless and please remember those families in your prayers! They still continue to be in need of daily prayers.


Melody

Thursday, July 7, 2005 8:28 PM CDT

We went to the ortho today about Nicholas' foot. Apparently, he has 2 of what he called compaction, buckle, or "toddler" fractures. Since their bones are still ossiflying (hardening) and are still so soft, they do not break like our bones do. He likened it to dropping a cylinder of clay...it will buckle in the middle and break on the outside edges only. He said there are 2 courses of treatment...benign neglect, meaning do nothing or cast it for 2-3 wks. He gave me the pros and cons of each and told me to decide. I am thinking you are the dr...you decide! He then asked me if Nicholas was in a lot of pain. I had to tell him I had no idea. Since Nicholas has SUCH a high pain threshold from the reflux and everything else, there is no way to know how much pain he is in at any given time...he just will not complain! He was concerned about this as most kids will get off the foot when it is bothering them enough. Nicholas refuses to rest and be still even with 103 fevers most times! He also noticed that Nicholas has really chubby feet and saw how swollen his foot was. Nicholas barely fits into shoes anyway and there is NO way that swollen foot is fitting into ANY shoe! He wanted Nicholas in a shoe to protect it....so....we decided on a compromise. He will be in the cast for about 10 days. Enough for the swelling to go down and to get over the acute pain and not long enough to keep him from swimming and having any loss of muscle strength. I thought that sounded like a good plan, so Nicholas is proudly sporting a RED cast on his leg and a tiny little cast shoe for it! He got to choose the color AND they gave him a little matchbox type car for being SO good! He was a real trooper...especially when he said Off now! and I had to tell him it did not come off and he screamed OFF PLEASE! I finally had him ok with the thought of leaving it on, but it took quite a bit of convincing. There is a new pic in the photo album where he is showing it off for y'all.....

Nathan has been SUPER fussy today and I have no idea what his issue is. I am worried as we have a 3 hr drive to San Antonio tomorrow. Ugh! Which reminds me....there will not be an update tomorrow night as it will be really late when we get in and there will not be time. I promise to post an entire update on Sat as I know there will be a lot to report. We have A LOT of questions!

Guess that is about all. Please continue prayers for the 2 families we know who have lost loved ones recently and also for the residents of London as they are going through quite a lot after today. Take care and God bless!


Melody

Wednesday, July 6, 2005 11:01 PM CDT

This kid just cannot do anything halfway! Anything he does has to be whole hog and then some! As you can pobably tell, his foot IS broken...but here is the kicker....it has 2 (count 'em...2!!) fractures!!! The peds office nurse told me that the radiologist's report said he had a hairline fracture on the foot under the 5th toe and an impaction fracture (never heard of this one before) on his foot under the 4th toe.

So, tomorrow we have an appt with the pediatric orthopedic surgeon to see what needs to be done. I am guessing casting it, but not entirely sure yet. In the mean time, we are supposed to keep him off it, ice it, and elevate it. I am wondering exactly HOW they expect me to reason with a 2 yr old over this??? He won't let me near him with ice, he is refusing to stay still, and the best I have been able to do is to get him to sit in the high chair (with the threat of using the seatbelt that he hates) watching Baby Einstein. I would LOVE to see them come over and try to do better!!

I cannot believe we have to wait until 3 tomorrow! I will more than likely be on my last shred of sanity by then! God help me!!

Other than that and Nathan on a marathon nursing kick, it has been pretty quiet here. Check out the new pics from our holiday weekend in the photo album!

Please continue to keep those 2 families in your prayers. They are struggling daily with their losses and could sure use any thoughts you can spare. Take care and God bless!


Melody

Tuesday, July 5, 2005 10:12 PM CDT

We finally had a laid back day without a lot of running around. We laid around in our pj's all morning, watched Noggin on TV, and had our lunch on a TV tray while watching Dora the Explorer. Then, it was off to bed for a nap for Nicholas. I was hoping for a nap as well, but Nathan had other plans. He must be going through his 3 mo growth spurt as he has been wanting to nurse 24/7 it seems these days! Instead of sleeping, I spent time nursing and nursing some more! I hope he is growing well! Nicholas did not sleep nearly well enough and was up in less than 1.5 hrs. We had been invited over to my friend's house to visit with her and her 3 yr old and meet the new baby, who is now home recovering well from his surgery. He looked great and seemed to not be bothered much at all from just having had surgery. Nicholas did not have much luck at this visit, however. He ran into the windowsill in their living room and broke open a scab from his skinned elbow he got at my sister's this past Sat and it bled. A Dora bandaid seemed to fix that problem. He and his little friend decided to be daredevils and jump off his bed. Nicholas fell flat on his face and cried. You would think that would have been lesson enough, but no. He did it again and my friend saw him land funny on his foot and he has been crying and saying OW and limping ever since. After a call into the peds office, they assured me that he should be fine to wait until the morning to see someone about it. It looks as if we will be paying yet another visit to the ped in the morning. We will see how it turns out. He is going to make me gray if he keeps this daredevil attitude up!

Guess that is about it for us. I will let you know how the dr visit goes tomorrow. Please continue to remember our 2 friends who have suffered losses recently as they continue to need many prayers. Take care and God bless!


Melody

Monday, July 4, 2005 10:37 PM CDT - Happy 4th of July!!!!

Sorry for the lack of update yesterday...the fireworks were late in starting and we still had a 1.5 hr drive AFTER loading up everything and everyone in the car once the fireworks were finished. Needless to say, it was VERY late once we got home and we went right to bed!

Yesterday was pretty fun! We got up, loaded up the car and headed out for Uma and Papa's house. First, we stopped by Target to buy some bug spray and a mosquito fogger as Nathan is too little to wear bug spray. We also bought a little potty seat to fit on top of the big potty so we did not have to lug the large potty chair with us. After that quick stop, we headed up to their house. We had a good lunch and then Nicholas played and tried to nap in the big bed for the first time and the room was just way too bright for him to sleep. Besides...his cousins had just arrived and that was MUCH more fun than napping, anyway! He also peed in the potty again....2nd time! Slow progress, but progress all the same! We then went to the pool and Nicholas got to go on his first waverunner ride! It is like a snowmobile, but for the water. He was not too sure about it and screamed for me when they got too far away, so Doug had to bring him back. We also swam in the pool at the Yacht Club and boy, was it HOT!!! Nathan enjoyed the water once there was a corner of the pool in the shade. I was too afraid of his skin burning in this kind of heat without him being in the shade. We had a HUGE spread for dinner, compliments of my mother in law. She cooks enough for an army and it was all delicious! After dinner, we ran over to see the progress on the house they are building and it is coming along really nicely and should be done by Sept. Then, it was "showtime!" to coin a phrase by Nicholas. We went out in their backyard and had front row seats for the fireworks show at the country club. It was fabulous, as usual! Then, back home, as it was really late.

Today was a bit more laid back. We slept in late, then woke and went to our clubhouse for some festivities in our neighborhood. Nicholas got to sit in the front seat of the firetruck there and loved it! Then, he ate his way through Fritoes and 1/2 a sausage on a stick, along with a bite of granola bar and a dum-dum lollipop. We then had some errands to run and then had a nice LONG nap once we got back before we headed out to have dinner at a friend's house and go watch our community's fireworks show. We had a great time and Nicholas had SO much fun playing with their daughter, who is 1 month to the day younger then he is. Now, we have 1 really exhausted toddler who is seriously cranky and ready to sleep! I hope he is in bed soon!

Guess that is all for us. Happy 4th if July, everyone! Please continue to remember the 2 families we know who have lost loved ones as they continue to really need the prayers. Take care and God bless!


Melody

Saturday, July 2, 2005 11:01 PM CDT

What a long day! We went to this Independence Festival at a church this morning with the lady who does Nicholas' riding lessons. It was fabulous! Everything was free....6 bounce houses/slides, face painting, colored hairspray, temp tattoos, pony rides (that the horses he rides did), a petting zoo, a miniature train that drove around the parking lot, games, and all the food and drinks (hot dogs, hamburgers, popcorn, snow cones, cookies, sodas, water, and even people walking around with boxes of popsicles and ice cream bars!). I know there was a lot more, but that is just what we saw. There was also a booth set up by a builder where kids could come and make either a wooden birdhouse or a wooden toolbox. Nicholas made a toolbox there with Doug while I took Nathan to the first aid station indoors so he could cool off. It was SO HOT there. About 100 in the shade and the heat was just stifling. Poor Nathan was just getting hotter and hotter and we thought he was nice and shady. We stripped him down to his diaper and used a wet towel to cool him off. He was much better after he was cooler. Poor baby! Needless to say, we did not stay long and left right after the trip indoors to cool off.

After that, we ran a few errands and got Nicholas a wetsuit bathing suit so he can go on the waverunner (like a jet ski, but bigger) tomorrow when we visit his parents. Lake water for swimming is a no-no with a g-tube, so we are going to cover it with Tegaderm and a wetsuit and let him go with Doug on the waverunner for a lap and then put him right back on land.

Then, it was off to my sister's for a cookout. We had burgers and dogs and visited. Since we were near the mall there by her house, we took Nicholas to Build-A-Bear Workshop for a reward for using the potty that time and also as a motivator to try harder. We let him pick an animal to make (he chose Elmo) and then he got to pick a pair of underpants for the Elmo to wear. Boy, was he excited! So, the newest member of the family is a bright red Elmo with tidy whities on! He LOVES it!

Guess that is all about us. Please remember to keep both families who have suffered losses in your prayers if you can and also my friend's baby who just had surgery. He is doing well and might come home as early as tomorrow. Take care and God bless!


Melody

Friday, July 1, 2005 9:52 PM CDT

Poor Nicholas! My sister drove all the way here today to play at Pump It Up, an inside play area with rooms full of inflatable bounce houses and moonwalks. You pay $5 per kid and play all morning. My sister and her kids had already gotten there, but I had to finish feeding Nathan and then we left. We got there and were met at the entrance by 2 employees who told us they were full and would not let us in! Poor Nicholas had done nothing but talk about going there since yesterday as we only go every once in a while as a special treat. He started sobbing! I tried to explain that I was meeting someone from out of town here and they asked if I had a way to call and let her know I could not come! OMG I was SO mad! I called my sister and left her a voicemail and then got back in the car and called Doug. He was so mad he called to complain. I drove back home with a sobbing toddler and went into the house with the boys and Doug called and told me they could let me in if I would go back. I could not believe the nerve as it was 25 min to closing time...packing 2 kids up again, driving there, unloading them, getting them to the door and then paying my $5 for Nicholas to play maybe 10 min??? Not a chance! Doug called back and basically told her I would not be going back at any time. My sister then called after getting my message and she was so angry too! She went and complained and got nowhere either. I told her to stay and finish the last few minutes and call me when they were leaving to meet somewhere for lunch before they had to head back. On her way out, the manager flagged her down and gave her 2 free passes for the next visit for the inconvenience. It was nice, but I am not sure I want to take my chances with a devastated toddler again. My nephew was pretty upset that Nicholas did not come either. What a morning!

We met them for lunch at the mall and went walking around as they were having a sidewalk sale. We found a few good deals there. Then my sister had to get back home to drop her little sister in law with her mother in law.

Doug got off from work early due to the holiday and we got to hang out while Nicholas was napping. We are looking forward to the festivities we have planned for the weekend.

If you can spare a prayer, please continue to keep my friend and her daughters who lost their husband/father in your prayers. Please also remember the lady I know who lost her precious baby boy in your prayers too. There are very rough days for them all and they sure could use your prayers.

We also have good friends who are currently at Texas Children's hospital waiting for their 2.5 wk old son to undergo emergency surgery to correct Pyloric Stenosis. They surgery should happen some time tonight and the expected stay is about 1-2 days. Please remember them as well as this is surely stressful to have this happen to their newborn.

Guess that is all. Take care and God bless!


Melody

Thursday, June 30, 2005 10:25 PM CDT

What a range of emotions today! The day started out well. Nicholas wanted to copy his cousin and use the potty after he did at my sister's today. So, he sat down and said ALL DONE like he usually does. I peeked in the potty just to see if he might have actually gone and guess what?? HE DID!! He was SO proud! I was too! He got to call around and brag and everyone was so happy for him! We ran a few errands after that and came back for lunch before Nathan and I had to run for his appt for PT eval.

At the appt, the PT kept saying things like "Hmmm...Interesting" and "I've never seen anything like it before" and stuff like that. Not exactly what you want to hear when someone is examining your child. Then, she goes and gets another PT for a second opinion and they discuss what they think sould be done in front of me and they are having a hard time deciding. Turns out it seems the Torticollis is not as bad as they thought it would be, strangely...especially after seeing him in the carseat, she was SO surprised it was not too bad. It is more than likely from him putting his head like that and causing it to be a problem, but she is not totally sure of that right now. Neither was the other PT. All they could come up with is that his neck muscles are extremely weak and he has terrible head control and they are giving him PT for that right now and keeping an eye on the torticollis to see if it gets any worse. They are not assigning any stretching exercises for the tightness yet as they fear making the neck weakness worse from the stretching. He will be receiving services once a week for the time being. She also feels as if this is greatly related to reflux right now and I will most definitely be bringing it up to the GI next Fri when we go and see if there is any testing we may need to look into to be sure his reflux is well controlled.

We also heard from the GI's office at Johns Hopkins and they are going to change Nicholas' appt from the GI he currently has the appt with to allow him an appt with the motility specialist instead. They have tentatively scheduled the antro-duodenal manometry testing for Sept 6 and it is a 24 hr inpatient test. That is going to be one long day. No word on any other testing as of yet.

I am sitting here writing this and feeling absolutely sick with sadness as I came home this evening to an email that a friend of mine and her daughters just lost her husband to a tragic accident earlier today. Please PLEASE pray for her as she has had a rough time lately and this could not have come at a worse time for her. Another woman I know also lost her baby boy today after a struggle with heart issues. Please remember them as well. It has been a very hard evening for me as I sit here feeling SO helpless to take away their pain and sadness. Please PLEASE pay for them.

Take care and God bless!


Melody

Wednesday, June 29, 2005 10:03 PM CDT

We had a great time at the mall today meeting our new friends! Nicholas had a wonderful time playing at the play area with the 4 yr old son and 8 yr old daughter of the lady we met with and then Doug showed up and we all enjoyed a yummy lunch at the food court. After that, Doug went back to work and the rest of us just walked around the mall for a little while and did a bit of shopping. We also let the kids ride the carousel. Nicholas started out in this little round bench seat that had a steering wheel in the middle that you could use to spin the seat around. He thought that was a ton of fun when his little friend was spinning them until he lost his balance and slipped off the seat onto the floor. After a brief stint of screaming and crying, the ride started and the horse he had moved onto had started moving up and down! He stopped mid-scream, took a ragged breath, and said "Ooooooooooh!" with a big smile on his face! I just laughed! That is so much like a little kid to get over something just that fast! Then, just when we thought we were about to leave, we saw Marble Slab Creamery! Now, what kid (or ice cream loving adult!) can refuse the allure of ice cream on a hot day? So, we all just HAD to stop! Nicholas had a dish of his usual "pink ice cream" (strawberry) and they gave him about twice as much as he could ever eat! I had a scoop of chocolate swiss in a waffle cone with Nestle' Crunch bar mixed in (and the rest of Nicholas'....can't let good ice cream go to waste, now can we??). YUM! After that, Nathan was dying to eat, so it REALLY was time to go! We decided that we need to make plans in the future to get together sometimes when they come to town. I think that sounds like fun!

Other than that, we did not do much of anything else today. Once we got home, Nicholas was SO tired that he crashed and napped for a while. Then, it was back to our usual home schedule. Dinner, bath, bedtime. He helped daddy grill hot dogs and fry up french fries for dinner, though, and thought he was a pretty big hot shot for that....especially after eating a whole hot dog AND all his fries for dinner! I am glad too, as it made up for a pretty pathetic amount of consumption at lunch today. I think he was having too much fun to worry about food then.

Tomorrow, we go to visit my sister and then I am taking Nathan for his PT eval at TCH while Nicholas takes his nap at my sister's house. I know he will be in good hands there and he won't freak if he wakes and I am not there. I am hoping that we will be back before he is up as this appt should be about an hour I think and is just a few miles from her house. I will update more tomorrow after the eval. Take care and God bless!


Melody

Tuesday, June 28, 2005 10:01 PM CDT

Nicholas new pump FINALLY came today!!! Since changing home health care companies, the new one wanted the ins to buy us a pump instead of having us rent, so we are now renting to own a brand new Zevex Infinity pump. It is a newer model than the other one we have and it is smaller and immersable in water! It also has a new backpack with it that is TINY in comparison to the red one he had with the other pump. It is all black and very sporty and looks just like a regular backpack...just a really tiny one! When we opened the box and took out the backpack, Nicholas said "Ooooooooooh! Cool backpack!" and then when I told him it was also a new pump, he ran around the house yelling "NEW PUMP, NEW PUMP!" I think he is excited about it! It has been charging all afternoon and we get to use it for the first time tonight. Fingers crossed it works well!

Other than that, it was a lazy, quiet day around here. We laid around in our pj's and played all day. It was fun! Nicholas was asking me all day for pizza, so when he was still asking at dinnertime, we decied to head out for CiCi's pizza for dinner. He was totally excited about that! We pulled into the parking lot and he yelled "YAY! PIZZA!" What a ham! I cannot complain, though, as he always eats well when we go there and tomorrow is weigh day!

Tomorrow, we get to meet someone I met online on a reflux site and her kids at the mall. She sees the former partner of the GI we currently see and one of the partners of the ENT we currently see. She is in town for a couple of her son's appts at TCH and in the med center and has time to meet us for a few hrs for lunch and a playdate at the mall play area while she is here. I am looking forward to it!

Nicholas' cousin (my sister's eldest son) is having success with potty training this time around! So far he has gone 2 days in big boy undies and had only one accident each day! He even has gone poo-poo in the potty each day, too! YAY! He is loving his bog boy undies and even wants to sleep in them! Nicholas saw a pic she sent of his cousin tonight in his undies and wanted to wear some, too. We pulled out the Nemo undies we had bought and put away and he was pretty proud to be wearing them. Once he had them on for a few min, he then proceeded to wet them! Ah, well....baby steps, right? We will get there one day!

Guess that is about all for our daily digest! Take care and God bless!


Melody

Monday, June 27, 2005 11:17 PM CDT

The intake meeting for ECI went well. We got a lot done and Nathan's evaluation with them is now scheduled for Aug 4. I am hopeful that they will be able to get us in sooner, but they are down 1 OT and the OT that sees Nicholas is just swamped with all the OT cases and all the evals too until they can hire a new one. The lady who came today was hopeful that once they hire a new person, some of the eval cases will be handed over to the new OT and thus, open up some spaces before then that we can schedule Nathan into. Fingers crossed!

Other than that, it was pretty quiet around here. Nathan is going through a growth spurt, I think, and he is sleeping a lot! Nicholas is a spunky, active 2.5 yr old and talking up a storm. He got mad at me for nursing the baby and taking a phone call and not focusing on him 100% and he took it upon himself to get into the tub of puzzles and take apart almost every puzzle in there to get my attention back on him. Ugh! Doug spent quite a bit of time helping him reassemble every puzzle when he got home.

Both the older boys got haircuts this evening and Nicholas actually sat there, for the first time, and let me cut it without fighting me and/or crying. He turned his head when asked and even looked down so I could get the bottom of the back....and we did it all without a show of his playing! It was pretty painless and he was rewarded with TONS of Gymboree bubbles blown by Doug in his bath afterwards. And, I must add, both my guys look pretty handsome sporting their new shorter 'dos! I am sure with the heat we are having, that they will both be loving their new 'dos, too!

Guess it is about time to hit the hay for the day. I am pooped! Take care and God bless!


Melody

Sunday, June 26, 2005 9:00 PM CDT

Today was a regular Sunday. Woke up, went to church, ate with my parents after church, came home and all tried to take a nap. The boys got a pretty good nap in, but Doug and I did not get nearly as good of one as we would have liked. Ah, well! What can you do?

We ran a few errands once the boys were up and Doug is out right now with Nicholas checking in on the boys' godmother's cat and grabbing a few things at the grocery store. It is actually pretty quiet as Nathan just ate and is happily kicking and wiggling on the floor next to me.

Tomorrow begins Nathan's eval with ECI for his torticollis and we will see how that goes. I will give the full report then. We are also hoping for Nicholas' new pump to be delivered and to hear back from the GI at Johns Hopkins as to the scheduling for his testing. As soon as we hear, we will update.

That is about all for today. Hope all are well! Take care, God bless, and sign the guestbook if you have not done so in a while!


Melody

Saturday, June 25, 2005 10:45 PM CDT

Nicholas was in 7th heaven today when we got to go to his riding lesson! You could just tell how much he had missed the horses and riding them. He rode Cinder today, who was a little jumpy and tried to take off while he was on him. That sure did not deter Nicholas though! After his lesson was over, he ran around the pasture like a true boy and got all dusty and dirty! He was covered from head to foot, fingernails caked, and clothes coated!

After we left, we went to run a couple of errands. While exchanging a bathing suit at Sam's Club, we discovered that someone had stolen Doug's driver's license number and had used it to write over $600 worth of bad checks in the past month at the Wal-Mart in Searcy, Arkansas. We immediately set about calling credit bureaus and puting fraud alerts on our credit. Doug also got on the computer and printed off a copy of our credit report and as far as it looks, nothing suspicious or out of the ordinary is there, thank goodness! Come Monday morning, we will be calling and trying to speak with a warm body to see if there is any unautherized activity going on that we know nothing about and Doug will be calling the DPS to see about what needs to be done regarding his stolen DL number. We are hoping he can get a new license issued with a new number and that will take care of the problem.

We got the boys all new Old Navy 4th of July shirts/onesies for the holiday and they should all look so cute together in their gray shirts. I am still on the lookout for a cute one...too bad I won't be matching. Ahhh, well.

Poor Nicholas' eye is looking worse by the hour. It started off this morning with a faint purple line and by late this afternoon, it had progressed to the lid being fully colored in purples and blues. It was even spreading a bit to under the eye as well. I hope it goes away as fast as it is coming out!

Other than that, it was a pretty laid back day. We just ran around a bit and then came home. Hope all are well! Take care and God bless!


Melody

Friday, June 24, 2005 9:30 PM CDT - Happy Anniversary, Mom and Dad!!!

Well, it is official...Nathan was diagnosed with Left-Sided Torticollis. I took him for an xray series this morning and we had to make him suffer through 3 tortuous and traumatic xray pictures. I have not seen him cry so much in a while, poor baby! And, what was worse was the fact I had to hold him down while it was happening. That just about broke my heart to have him look me in the eye and just wail. The radiologist read the films today and called the ped's office, who then called to tell me the news. I was prepared for that diagnosis, but it still left me strangely sad at the same time. I guess that somewhere in the back of my mind, I was kind of hoping for them to call and say that it all looked fine and nothing was wrong. We have the PT eval coming up this Thurs at 1:00 and his ECI therapy eval on Mon at 10:00. Hopefully we can knock out this issue with some therapy and that will be the end of it.

On a better note, Doug called to the GI's office at Johns Hopkins and Nicholas has an appt tentatively scheduled for Sept 1 at 9:00. So far, so good. They are going to decide what testing they want to do and see when they can schedule those around the time we are there. I am so excited that this trip is finally coming together!

Poor Nicholas! He is more than likely going to have a black eye! He was running to Doug this evening and tripped over his own feet and went headfirst into Nathan's carseat carrier. He hit it SO hard, he sent the carrier flying about 3-4 in from where it had been sitting. His poor eye is all swollen on the top eyelid under his brow and he has a pretty good sized knot there. Too bad kids this age are not so great at holding ice on it! We need to get one of those boo-boo ice packs with a teddy bear or Elmo or something. Maybe then he would use it. It is already starting to discolor and turn purple and I am guessing that it will be a pretty good shiner by tomorrow. My mom said I need to get a picture of it for posterity. We will see if I can get him to sit still tomorrow while the colors are out in all their glory!

Tomorrow is riding lessons and he will be able to ride! Woohoo! He is going to be SO excited! Guess we need to hit the hay to be ready for it tomorrow! Take care and God bless!


Melody

Friday, June 24, 2005 9:30 PM CDT - Happy Anniversary, Mom and Dad!!!

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Friday, June 24, 2005 9:04 PM CDT - Happy Anniversary Mom and Dad!!!
Well, it is official...Nathan was diagnosed with Left-Sided Torticollis. I took him for an xray series this morning and we had to make him suffer through 3 tortuous and traumatic xray pictures. I have not seen him cry so much in a while, poor baby! And, what was worse was the fact I had to hold him down while it was happening. That just about broke my heart to have him look me in the eye and just wail. The radiologist read the films today and called the ped's office, who then called to tell me the news. I was prepared for that diagnosis, but it still left me strangely sad at the same time. I guess that somewhere in the back of my mind, I was kind of hoping for them to call and say that it all looked fine and nothing was wrong. We have the PT eval coming up this Thurs at 1:00 and his ECI therapy eval on Mon at 10:00. Hopefully we can knock out this issue with some therapy and that will be the end of it.

On a better note, Doug called to the GI's office at Johns Hopkins and Nicholas has an appt tentatively scheduled for Sept 1 at 9:00. So far, so good. They are going to decide what testing they want to do and see when they can schedule those around the time we are there. I am so excited that this trip is finally coming together!

Poor Nicholas! He is more than likely going to have a black eye! He was running to Doug this evening and tripped over his own feet and went headfirst into Nathan's carseat carrier. He hit it SO hard, he sent the carrier flying about 3-4 in from where it had been sitting. His poor eye is all swollen on the top eyelid under his brow and he has a pretty good sized knot there. Too bad kids this age are not so great at holding ice on it! We need to get one of those boo-boo ice packs with a teddy bear or Elmo or something. Maybe then he would use it. It is already starting to discolor and turn purple and I am guessing that it will be a pretty good shiner by tomorrow. My mom said I need to get a picture of it for posterity. We will see if I can get him to sit still tomorrow while the colors are out in all their glory!

Tomorrow is riding lessons and he will be able to ride! Woohoo! He is going to be SO excited! Guess we need to hit the hay to be ready for it tomorrow! Take care and God bless!


Melody

Thursday, June 23, 2005 7:58 PM CDT - Happy 3 month Birthday Nathan!!!

Ugh! I just lost the entire update that I had been typing and was almost finished with! Ugh! Here goes again....

Guess who is 3 mos old today?? Can you believe he has been here that long? It seems like just last week I was pg!

We had a pretty laid back day today. My sister came over and we went to the baby stortime with the boys. It was fun, as usual, and we went out for our first sit-down meal with 4 boys in tow afterwards. It was not too bad for 2 harried moms who were outnumbered 2 to 1! My 2.5 yr old nephew fell out of his chair accidentally and my 9 mo old nephew was squealing gleefully at the top of his lungs until he discovered a new love affair with saltine crackers. Nicholas was turned around drooling at the chips and salsa at the table behind us while we waited the forever it took to send us our food. Nathan was the quietest one as he slept through the whole meal. Nicholas ate pretty well...1/2 his mac and cheese, a few fries, and 2 crackers. The burger I had was heavenly. Not bad for our first sit-down meal with 4 kiddos!

We go to visit my sister tomorrow. We will also be stopping to get Nathan's pre-PT evaluation x-rays. Might as well kill 2 birds with one stone as the place we will be going for therapy is about 1 mile from her house and about 20 from ours!

Our ins is making us change Home Health Care companies from one here in town to one in Waco, about 3-4 hrs from here. They are buying us a brand new pump...one that is smaller than the one we currently have and also the backpack to go with it...one that is also much smaller than the current backpack we have. I am excited to be getting the new pump, but a bit anxious as this place is not local and I am not sure what will happen if we have pump problems and require a replacement. I am looking forward to trying the new pump out and it should be getting here either tomorrow or Sat!

A small blessing I need to share with you happened today. We had gotten a letter from a collection agency from our children's hosp and it was for a bill we have called them about MANY TIMES and asked them repeatedly to add to our account that we pay on monthly. We had to call them YET AGAIN about this same bill and when Doug got someone on the phone to request AGAIN that they please add it to our acct, the woman remarked that it was a bill from back in 2003. Doug said that it was and she then said that since that bill, plus several others we were still paying off were SO old, she was just going to go ahead and write them off as paid! That is over $1,100 in bills from them! Granted, we still have 2004 and 2005 still to pay on, but what a huge burden lifted off of our acct from eliminating those bills! We are so grateful for the kindness of strangers when things like this happen. I know at times like this that God is watching over us!

Anyways...on that wonderful note, I will end for today. Take care and God bless!


Melody

Friday, June 24, 2005 9:04 PM CDT - Happy Anniversary Mom and Dad!!!

Well, it is official...Nathan was diagnosed with Left-Sided Torticollis. I took him for an xray series this morning and we had to make him suffer through 3 tortuous and traumatic xray pictures. I have not seen him cry so much in a while, poor baby! And, what was worse was the fact I had to hold him down while it was happening. That just about broke my heart to have him look me in the eye and just wail. The radiologist read the films today and called the ped's office, who then called to tell me the news. I was prepared for that diagnosis, but it still left me strangely sad at the same time. I guess that somewhere in the back of my mind, I was kind of hoping for them to call and say that it all looked fine and nothing was wrong. We have the PT eval coming up this Thurs at 1:00 and his ECI therapy eval on Mon at 10:00. Hopefully we can knock out this issue with some therapy and that will be the end of it.

On a better note, Doug called to the GI's office at Johns Hopkins and Nicholas has an appt tentatively scheduled for Sept 1 at 9:00. So far, so good. They are going to decide what testing they want to do and see when they can schedule those around the time we are there. I am so excited that this trip is finally coming together!

Poor Nicholas! He is more than likely going to have a black eye! He was running to Doug this evening and tripped over his own feet and went headfirst into Nathan's carseat carrier. He hit it SO hard, he sent the carrier flying about 3-4 in from where it had been sitting. His poor eye is all swollen on the top eyelid under his brow and he has a pretty good sized knot there. Too bad kids this age are not so great at holding ice on it! We need to get one of those boo-boo ice packs with a teddy bear or Elmo or something. Maybe then he would use it. It is already starting to discolor and turn purple and I am guessing that it will be a pretty good shiner by tomorrow. My mom said I need to get a picture of it for posterity. We will see if I can get him to sit still tomorrow while the colors are out in all their glory!

Tomorrow is riding lessons and he will be able to ride! Woohoo! He is going to be SO excited! Guess we need to hit the hay to be ready for it tomorrow! Take care and God bless!


Melody

Thursday, June 23, 2005 7:58 PM CDT - Happy 3 month Birthday Nathan!!!

Ugh! I just lost the entire update that I had been typing and was almost finished with! Ugh! Here goes again....

Guess who is 3 mos old today?? Can you believe he has been here that long? It seems like just last week I was pg!

We had a pretty laid back day today. My sister came over and we went to the baby stortime with the boys. It was fun, as usual, and we went out for our first sit-down meal with 4 boys in tow afterwards. It was not too bad for 2 harried moms who were outnumbered 2 to 1! My 2.5 yr old nephew fell out of his chair accidentally and my 9 mo old nephew was squealing gleefully at the top of his lungs until he discovered a new love affair with saltine crackers. Nicholas was turned around drooling at the chips and salsa at the table behind us while we waited the forever it took to send us our food. Nathan was the quietest one as he slept through the whole meal. Nicholas ate pretty well...1/2 his mac and cheese, a few fries, and 2 crackers. The burger I had was heavenly. Not bad for our first sit-down meal with 4 kiddos!

We go to visit my sister tomorrow. We will also be stopping to get Nathan's pre-PT evaluation x-rays. Might as well kill 2 birds with one stone as the place we will be going for therapy is about 1 mile from her house and about 20 from ours!

Our ins is making us change Home Health Care companies from one here in town to one in Waco, about 3-4 hrs from here. They are buying us a brand new pump...one that is smaller than the one we currently have and also the backpack to go with it...one that is also much smaller than the current backpack we have. I am excited to be getting the new pump, but a bit anxious as this place is not local and I am not sure what will happen if we have pump problems and require a replacement. I am looking forward to trying the new pump out and it should be getting here either tomorrow or Sat!

A small blessing I need to share with you happened today. We had gotten a letter from a collection agency from our children's hosp and it was for a bill we have called them about MANY TIMES and asked them repeatedly to add to our account that we pay on monthly. We had to call them YET AGAIN about this same bill and when Doug got someone on the phone to request AGAIN that they please add it to our acct, the woman remarked that it was a bill from back in 2003. Doug said that it was and she then said that since that bill, plus several others we were still paying off were SO old, she was just going to go ahead and write them off as paid! That is over $1,100 in bills from them! Granted, we still have 2004 and 2005 still to pay on, but what a huge burden lifted off of our acct from eliminating those bills! We are so grateful for the kindness of strangers when things like this happen. I know at times like this that God is watching over us!

Anyways...on that wonderful note, I will end for today. Take care and God bless!


Melody

Thursday, June 23, 2005 7:58 PM CDT - Happy 3 month Birthday Nathan!!!

Ugh! I just lost the entire update that I had been typing and was almost finished with! Ugh! Here goes again....

Guess who is 3 mos old today?? Can you believe he has been here that long? It seems like just last week I was pg!

We had a pretty laid back day today. My sister came over and we went to the baby stortime with the boys. It was fun, as usual, and we went out for our first sit-down meal with 4 boys in tow afterwards. It was not too bad for 2 harried moms who were outnumbered 2 to 1! My 2.5 yr old nephew fell out of his chair accidentally and my 9 mo old nephew was squealing gleefully at the top of his lungs until he discovered a new love affair with saltine crackers. Nicholas was turned around drooling at the chips and salsa at the table behind us while we waited the forever it took to send us our food. Nathan was the quietest one as he slept through the whole meal. Nicholas ate pretty well...1/2 his mac and cheese, a few fries, and 2 crackers. The burger I had was heavenly. Not bad for our first sit-down meal with 4 kiddos!

We go to visit my sister tomorrow. We will also be stopping to get Nathan's pre-PT evaluation x-rays. Might as well kill 2 birds with one stone as the place we will be going for therapy is about 1 mile from her house and about 20 from ours!

Our ins is making us change Home Health Care companies from one here in town to one in Waco, about 3-4 hrs from here. They are buying us a brand new pump...one that is smaller than the one we currently have and also the backpack to go with it...one that is also much smaller than the current backpack we have. I am excited to be getting the new pump, but a bit anxious as this place is not local and I am not sure what will happen if we have pump problems and require a replacement. I am looking forward to trying the new pump out and it should be getting here either tomorrow or Sat!

A small blessing I need to share with you happened today. We had gotten a letter from a collection agency from our children's hosp and it was for a bill we have called them about MANY TIMES and asked them repeatedly to add to our account that we pay on monthly. We had to call them YET AGAIN about this same bill and when Doug got someone on the phone to request AGAIN that they please add it to our acct, the woman remarked that it was a bill from back in 2003. Doug said that it was and she then said that since that bill, plus several others we were still paying off were SO old, she was just going to go ahead and write them off as paid! That is over $1,100 in bills from them! Granted, we still have 2004 and 2005 still to pay on, but what a huge burden lifted off of our acct from eliminating those bills! We are so grateful for the kindness of strangers when things like this happen. I know at times like this that God is watching over us!

Anyways...on that wonderful note, I will end for today. Take care and God bless!


Melody

Thursday, June 23, 2005 7:58 PM CDT - Happy 3 month Birthday Nathan!!! Happy Birthday Jon!!!

Ugh! I just lost the entire update that I had been typing and was almost finished with! Ugh! Here goes again....

Guess who is 3 mos old today?? Can you believe he has been here that long? It seems like just last week I was pg!

We had a pretty laid back day today. My sister came over and we went to the baby stortime with the boys. It was fun, as usual, and we went out for our first sit-down meal with 4 boys in tow afterwards. It was not too bad for 2 harried moms who were outnumbered 2 to 1! My 2.5 yr old nephew fell out of his chair accidentally and my 9 mo old nephew was squealing gleefully at the top of his lungs until he discovered a new love affair with saltine crackers. Nicholas was turned around drooling at the chips and salsa at the table behind us while we waited the forever it took to send us our food. Nathan was the quietest one as he slept through the whole meal. Nicholas ate pretty well...1/2 his mac and cheese, a few fries, and 2 crackers. The burger I had was heavenly. Not bad for our first sit-down meal with 4 kiddos!

We go to visit my sister tomorrow. We will also be stopping to get Nathan's pre-PT evaluation x-rays. Might as well kill 2 birds with one stone as the place we will be going for therapy is about 1 mile from her house and about 20 from ours!

Our ins is making us change Home Health Care companies from one here in town to one in Waco, about 3-4 hrs from here. They are buying us a brand new pump...one that is smaller than the one we currently have and also the backpack to go with it...one that is also much smaller than the current backpack we have. I am excited to be getting the new pump, but a bit anxious as this place is not local and I am not sure what will happen if we have pump problems and require a replacement. I am looking forward to trying the new pump out and it should be getting here either tomorrow or Sat!

A small blessing I need to share with you happened today. We had gotten a letter from a collection agency from our children's hosp and it was for a bill we have called them about MANY TIMES and asked them repeatedly to add to our account that we pay on monthly. We had to call them YET AGAIN about this same bill and when Doug got someone on the phone to request AGAIN that they please add it to our acct, the woman remarked that it was a bill from back in 2003. Doug said that it was and she then said that since that bill, plus several others we were still paying off were SO old, she was just going to go ahead and write them off as paid! That is over $1,100 in bills from them! Granted, we still have 2004 and 2005 still to pay on, but what a huge burden lifted off of our acct from eliminating those bills! We are so grateful for the kindness of strangers when things like this happen. I know at times like this that God is watching over us!

Anyways...on that wonderful note, I will end for today. Take care and God bless!


Melody

Wednesday, June 22, 2005 9:07 PM CDT

Ok...here is the Nathan update from our appt today...

The ped looked at the pics we had on the digital camera and looked him over really well. He recommended that Nathan get a Physical Therapy referral for an evaluation for Torticollis (the funky neck tilt he has) and to look at the possible tone issues as well. We got a referral for Texas Children's Therapy center. He also looked at the flattened area on his head and did notice that it was there. The flattening is called Plagiocephaly and he was unsure if it was positional Plagiocephaly from laying down all the time. This is something that will be outgrown as the baby matures and spends less time laying and more time sitting and crawling/cruising/walking and the head will naturally round out on its own. The other Plagiocephaly is when the flattening has more to do with something else than positioning and needs helmet molding therapy. He said only time will tell but he is planning on keeping a close eye on it and we would see what happens. He also said that neurologically he seems to be doing just fine, so I was really happy to hear that. Not the best news, but definitely not the worst either.

Nicholas is on a different med for the Thrush now as the Nystatin is no longer working for him and he cannot seem to shake it. I hope this Diflucan will do the trick for him! We also heard from our GI today regarding the GI referral to Johns Hopkins....he talked with the GI he knows there and this dr said he was very interested in seeing Nicholas. He will also be able to do the manometry testing on him, too. I am glad he sounded so interested in Nicholas as I am hoping it means that he is thinking he may have something to offer Nicholas that might help. I am feeling very encouraged about this trip and I am hoping that we can learn some more information about him than we already knew. Maybe it it will be the missing piece to the puzzle and we will know what to do to help him. I am keeping my fingers crossed.

That was pretty much they day, besides going to the library for storytime this morning. It was a lot of fun, as usual. Ok...I am heading for bed. Take care and God bless!


Melody

Tuesday, June 21, 2005 10:10 PM CDT

Well, today was full of good news and bad. Which shoud I start with? I am going to start out on the positive...

Nicholas had a dentist appt today...his second one. He got to choose a really cool grover, elmo, and zoe toothbrush and show them how he brushes (with a little help from me!). Then, he went into an exam room and got to brush Sammy the snake's teeth (a stuffed snake with dentures sewn into it's mouth)with a giant toothbrush. That sure was exciting for him! While we waited for the dentist, he played puzzles really nicely with one of the hygenists and she was so impressed with how nicely he did the puzzles and how well he knew his shapes on the shape puzzle. He even laid down for the dentist under the light and held his mouth open while the dentist looked in his mouth. For a kid with a long history of oral aversion, this was a huge deal..and the fact he actually laid down on the table for him too was also no small thing. The dentist told me his teeth look perfect and to keep doing exactly what we are doing. I was really glad to hear this.

Nathan did not fare as well today. Nicholas had OT today and his therapist gave Nathan a good once over on my request as he has been doing this funny head tilt for some ime now and I wanted to be sure it was not a problem. Well....it is. It is something called Torticollis and means that his neck muscles are working better on one side than the other. he will most likely need therapy to work on this. Even worse is that she noticed that he has patterns of high muscle tone all over his body, especially on the side his head tilts towards. This is what has been making nursing him break my arm, make it near impossible to sit him up to burp him, and difficult to hold him. He tenses up as stiff as a board and he is so hard to maneuver when he is like that. It is also causing him to be delayed in reaching some of his milestones. To top it all off, she also felt a flattened area on the side of his head from him constantly tilting his head only one way and putting pressure on one spot only on his head. Worse case scenario with that, he may need molding helmet therapy to reshape his skull and round out his head again. She recommended that we atart a referral right away with ECI for therapy to address his tone issues and take him right away to the ped and have him medically evaluated as well. He is now in the referral process with ECI as of this afternoon and will be seeing our ped tomorrow afternoon. This hit me really hard as I was SO hoping to enjoy Nathan's babyhood without all the medical issues, therapists, and dr appts. I cried for a while on the phone to my mom grieving the loss of a "normal" babyhood for him. I just hope that he will not have to suffer as much as Nicholas did. I am not sure I could bear watching another child of mine go through that again. It is very difficult. I am over the initial shock now and, although still saddened by the news, I am ready to get the ball rolling and take care of this as quickly as possible so we can get busy working on resolving these issues for him. I will update more after we see the dr tomorrow and decide what is going on with him and if referrals are necessary.

Nicholas had a good therapy session and is doing really well. I am SO thankful for that. He is really making good progress and I could not be prouder.

Guess that is the day in a nutshell. Hope all are well. Take care and God bless!


Melody

Monday, June 20, 2005 9:49 PM CDT

Nicholas had DT today and we found out that his other DT who is on maternity leave has decided to stay at home with her baby and thus, has resigned. I kind of had a feeling that would happen, but all the same we will miss her. I hope she will be going to baby storytime with her little girl so we can still see her sometimes. Nicholas had a good session today and worked well. I had the DT look at Nathan as he has been doing funny things with his neck, like leaning it always to the same side. This is a condition called Torticollis and needs therapy to address as it has to do with the tone of muscles. She recommended that, since the OT was going to be coming for Nicholas tomorrow, we should have her look as well as she should be a better judge and decide where to go from there. We may need to refer him for an evaluation through ECI, like Nicholas has done, but we will see after she looks tomorrow.

Doug and I had eye dr appts today. Both of us are doing well with our eyesight...not much change, if any. This is the best I have ever done here of late, out of all my years of going to them, and I am thrilled. Although I am legally blind without corrective lenses, these contacts have forced my eyeballs to keep shape and have virtually stopped them from changing my vision. The only bad part is that my eyes tend to hold the dilation for a very long tine and sadly, they did not have any reversal drops today, so I have to wait for them to change back on their own. Doug's eyes were back to normal in under 4 hrs, but mine, now almost 6 hrs later are still fully dilated and I have a terrible headache. It might not be until the morning that they are fully back to normal.

Guess that is all. Take care and God bless!


Melody

Sunday, June 19, 2005 9:45 PM CDT - Happy Father's Day!!!

To my wonderful husband....THANK YOU for all you do and the wonderful father you have been to our children. We all love you!

We had a great Father's Day today. First, we got up and went to church. They had a portion of the service to commission our new baptismal font today and all the members of the congregation got to dip their fingers in the holy water and renew ther baptismal vows. It was a really nice service. The new baptismal font is BEAUTIFUL and it is this wonderful large glass bowl that sits atop a custom made (by a church member) stand. We are lucky to have such talent among the members of our church. Our alter vestaments and the ministers' stolls were made by another church member who is an award winning textile artist and those are all just wonderful as well.

After church, we went to eat at Sweet Tomatoes, a salad bar place. It was SO yummy....even though I did not get to eat any salad (Nathan cannot handle lettuce right now). We headed home after eating, stopping along the way for a newspaper. We all were so tired we took a nice nap after arriving home.

Doug wanted to go to dinner at Rainforest Cafe and it was super yummy! Nicholas did not do too bad of a job eating either...but, he does like to eat there! Nathan, on the other hand, seemed to be a bit overstimulated there and was pretty fussy. He was on sensory overload from all the noise, flashing lights, and movement. He was MUCH happier when we left after dinner.

Our final activity of the day was a trip to the pool. Nathan is still very unsure of the water and the whole experience and tolerates the water for a short time, but Nicholas is a total water baby! He thought we were going to his godmother's pool again even though we have been telling him since yesterday that she went bye bye in the sky on an airplane and won't be back for a little while. He was upset when we told him it was not her pool and when he said for her to come swimming, we had to tell him she could not come. He was NOT happy, but I am hoping it will sink in soon and he will be ok with it until she is back. He seemed to be better once we got to the pool and he was able to get in the water.

As for our health, Nicholas and Nathan have Trush AGAIN and that means I do too through the nursing. This is getting SO OLD!!! We are going to have to go into the peds and talk about this and see if there is anything we can do to stop this ugly cycle. I am also battling another blocked duct, so needless to say, I am seriously uncomfortable today. Ugh! Fingers crossed this will all pass very soon!

Guess that is about all. Take care and God bless!


Melody

Saturday, June 18, 2005 10:03 PM CDT

Nicholas and his godmother had a bit of a rough morning this morning. He is finally old enough to realize that she was leaving when we dropped her off at the airport this morning. He cried, fussed, struggled to get down, and was saying "I go too!!!!". Luckily, she will be back in a few weeks, but now she has sad kiddos at both ends...Nicholas here and her niece and nephew in IL. He was ok after a bit, but he was not happy she left. I know it will make it all the better for him when he sees her again in July.

No riding lessons again today as the lady who runs the place we go is STILL out of town at DisneyWorld! Lucky them! I think they may have come back today, though. Nicholas is really missing that, too. He had a rough day today as you can tell!

We ran a few errands early this afternoon...hit a good sale at Stride Rite and got Nicholas some shoes to put away for later, and got Nathan a couple of outfits and a patriotic onesie and Nicholas a shirt at Old Navy on a great 1/2 off the clearance price sale. Went and picked up a gift and also ran to the toy store to look for something and ended up leaving with something I was not even shopping for. Ah, well...it was pretty inexpensive as I paid just over $3.

Guess that is all for today. Hope all are well! If you have not signed the guestbook yet, or at least not in a while, please do so we can see who has been stopping by and read Nicholas the messages you leave for him! Take care and God bless!


Melody

Friday, June 17, 2005 9:20 PM CDT

Today was a lot busier that we thought it would be. Nicholas' Uma and Papa called to ask if we were busy for lunch, and since we weren't, we decided to meet them at Arby's. After a wardrobe argument with Nicholas about shoes and a small tantrum abiut missing Dora while we were eating, we finally got out of the house and into the car and were a few minutes late in meeting them. They were here in town dropping off some marble and tile samples for their new house. The marble they picked for the bathroom and kitchen countertops are both beautiful and go very nicely with the corresponding tile for that room.

The boys' godmother was supposed to come over this afternoon to watch the episode of Trading Spaces that was filmed in our hometown with the people on it being parents of kids who go to the school where my mom works. She was running a bit behind and did not make it until after the show was over. We went to meet another friend of ours for dinner for a last hurrah before everyone goes their seperate ways to go home to visit for the summer.

Tomorrow morning is an early one for us as we are taking the boys' godmother to the airport for her flight home, so we are going to bed early (Nathan, are you listening?) so we can get some sleep and make up for the early rising. Take care and God bless!


Melody

Thursday, June 16, 2005 10:59 PM CDT

You guys will NEVER believe who called today!!! Johns Hopkins called regarding Nicholas' Immunology referral and were ready to schedule an appt!! We have been calling our current immuno for a while now and had not heard a word from him about any of this, so I was quite surprised and felt a bit ignorant when they did call as I had to ASK if this was for GI or Immunology. That appt has tentatively been scheduled for Sept 2. We have been frantically trying to talk to the GI to see what he can do with referring us and getting Nicholas an appt near to that time so we can do all the appts and testing on one trip. When Doug called JH to try and make an appt, they told him that the GI we needed to see was booked until NOV!! This is when it pays to have a dr on your side as they can pull strings and get you in sooner! We will keep you posted on the progress we make with making this trip a reality! I cannot tell you how thrilled I am that this trip is actually looking like it will be a reality for us and for Nicholas.

My sister came today for the baby storytime and we all had a good time. Then it was off for a short shopping trip to the mall where Doug's father's day gift was purchased and we grabbed a quick lunch. Once we got back home, my parents came over and we gave my dad his gift as we were all together. It was a photo frame with both our college grad pics in it and pics of us in our caps/gowns with our parents. A funny story about that...for some reason Doug only took pics of me with a friend at my grad and my parents have one of my mom, me, and my grandma and another of my dad, me, and my grandma. Neither one of us had one with just the 3 of us together. So, late last night, I spent almost an hour copying those pics my parents had, cutting my mom out, coloring her edges so she was not ringed in white from the paper edge, taping her down to the other pic, repositioning her several times, and then copying the doctored pic so we could frame it. I have to say...it looks pretty good! Unless you KNEW it was doctored, I am not sure you would ever know it had been altered. My dad was really touched and it seemed that he loved it!

After they all left, we went to meet the boys' godmother for dinner and then to her apartment for swimming. It was fun!

Now it is time for bed..... Take care and God bless!


Melody

Wednesday, June 15, 2005 10:57 PM CDT

We had a pretty uneventful day here today. I was glad for this after yesterday's window incident as I am not sure my heart could have taken any more excitement!

The boys and I went to storytime at the library this morning and ran into some old friends we had not seen in months. It was so good to see them again and she is no longer working and is interested in trying to resurrect our old playgroup. I am excited about this prospect as I think it will be fun to be able to sit around and visit while the kids play...it will be just like old times!

Nicholas discovered that he liked whole pitted fruit today(peaches, nectarines, plums) and threw a fit when I cut the skin off his peach at lunch. He was a sticky dripping mess, but he LOVED it and ate about as much as he could get off of it. He also ate the better part of a plum tonight after dinner and I was kind of surprised that he ate as much as he did as the skin was a bit bitter. I was seriously impressed! He had another episode of dumping yesterday and we are having to dilute feeds again until he is stooling regularly again. I hope this is not another setback in our efforts to wean him from overnight feeds, but if he does not gain or he loses, we will not be able to progress with weaning until he has another good week. Diluting feeds loses calories, so I am praying it is not a big loss for him.

Nathan had a good day. He is eating better since we ended the Thrush meds on Sunday. He is 12 wks old today, around 11 lbs, and is smiling a lot more! Where has the time gone? Seems like last week I was pg and stuck in this chair with barely any lap for my computer to rest on! Before you know it, he is going to be running all over the house with his brother!

Tomorrow, my sis comes over and we are heading to the baby storytime here and then to the mall for some shopping. I am looking forward to that!

Take care and God bless!


Melody

Tuesday, June 14, 2005 11:43 PM CDT - Happy Flag Day!

We were visiting at my sister's house today and my parents were there too. My dad had Nathan, my mom was feeding my 9 mo old nephew, and Nicholas and his same age cousin were running around while my sister and I made lunch. The boys decided to climb up at the table by my mom, which was fine. The next thing we knew, my mom screamed Oh my God! and there was the sound of crashing glass. My sister and I ran into the dining room. Nicholas had reached into the fruit bowl in the center of the table and the metal top-heavy chair he was sitting in had tipped backwards and crashed through the dining room window with Nicholas still in it!! We were freaking..it was a miracle that he did not go thru the window too!! He was hanging for dear life onto the edge of the table! Luckily he was not hurt (scared to death tho!) and my brother-in-law (who is a handy guy) figured out how he could remove the remaining glass shards and replace it with a piece he is getting cut for about $22. What a scary day!

Other than that the day went well! We had a nice visit and also had a trip to the baby storytime at the library.

We met up with the boys' godmother for dinner and went out for 2 for 1 wings night. YUM!

After that day, I am ready for bed! Take care and God bless!


Melody

Monday, June 13, 2005 9:04 PM CDT - Welcome Adrian Christopher!!!!

My friend had her baby today!! She was only in labor 3 hrs (lucky her!) and had a beautiful baby boy at 7 lbs 4 oz, 20 in and dark wavy hair!

Our day was not nearly as eventful, but Nicholas did ask to try the potty twice and seemed to like it. He did not produce, but asking was enough of progress for me!

Nathan actually pooped on his own every diaper today!! Lately we have had to give him a suppository every few days as he has not gone on his own at all, even with taking daily laxative 2x a day.

Tomorrow we are going to my sister's house to play and meeting my parents there too and all go to the baby storytime and then back for lunch and a visit. I am looking forward to it!

That's about it for us. Hope all are well. Take care and God bless!


Melody

Sunday, June 12, 2005 9:11 PM CDT

We did get the pictures taken today, but boy was it a chore to get them! The boys' godmother went with us again and thank goodness she did as we really ended up needing her! Nicholas did not want to take the pics and Nathan chose not to eat before we left and was seriously hungry and upset when it was time to take the pictures. I finally had to take him into their changing room there at the photo studio and nurse him really fast. Meanwhile Nicholas hit his face on a door and it left a red mark and I sure hope this will not show in the pictures. Nathan was still fussy all throughout, but we were able to get a few good pics in between him fussing and Nicholas being restless. They are to be in by July 7th. Fingers crossed they turn out ok.

We got home and Nicholas went down for a nap while Doug mowed the backyard. Tomorrow is the front yard as it was too hot and he was too overheated to do both today. It is hard work mowing in this heat and humidity.

Later this afternoon, we took Nicholas to Target to pick out his potty and he was so excited he took his pants right down there in the middle of the aisle so he could go on the spot! We had to convince him he needed to wait until we got home to pull his pants down. He settled for sitting on the potty with the lid up in the cart until we left and got into the car. He is a riot sonetimes!

Guess that is about it for today's update. Take care and God bless!


Melody

Saturday, June 11, 2005 10:20 PM CDT

I am not really happy right now. We had planned on cleaning, which we got a good start on and took time out to take Nathan to get his baptism pics taken and Nicholas was going to jump into one with him and we were hoping it would be a better one than the last time he got pics taken with his little brother and neither would cooperate. Anyways, we had been calling ALL day to try to get an appt, but we either got a fax machine or no answer every time. We took them in anyway late in the day hoping it would not be too busy. We were wrong! There was ONE lady there and they were booked up all day. I was a little bit put off by the fact that they never informed the store operator that nobody was answering because they were understaffed or that they did not tell that they were booked up or even send omeone to help at least with the phones. So, we now have to wash the pic outfits and go back AGAIN tomorrow and we wasted all that time going there for nothing when we could have been cleaning. Ugh! They better be some good pics! The boys' godmother went with us for an extra set of hands and she very graciously offered to go back with us tomorrow. She is SO good to us!

We decided to hit Red Lobster for dinner as it was right there and it was getting late....and it was also yummy. Good company and good food..and the best thing of all is that Nicholas asked to go to the bathroom to go potty! Doug took him into the men's room and sat him on the toilet, but he was not able to produce. He is going through some constipation right now and probably feels like he needs to go, but cannot right now. He DID ask though! That is a start. I think we may be potty shopping tomorrow! He is going to get to pick out his very own potty and we will see where it takes us!

That is about it for today. Hope all are well! Take care and God bless!


Melody

Friday, June 10, 2005 11:25 PM CDT

Boy, we sure had a lot of visitors to see today!

First, my sis came over and brought my 2 nephews. We played a lot of the morning and had fun once her oldest and Nicholas stopped picking at each other and started getting along a bit easier. My parents called and wanted to come over, so they came right before lunch, cameras in hand, and came outside with us. Needless to say, there was a lot of loving and attention being showered on ALL the boys and plenty of picture taking going on as well! Not long after they arrived, we made and ate lunch and then the 3 oldest boys went down for their respective naps. Nathan flirted with everyone in the mean time and tried to make up for all the time he missed being with his grandparents before he was born! And, it isn't surprising that my parents were more then happy enough to give it to him. Could you resist that face? After waking, the boys ate a snack and it was time for everyone to go.

Not long after they left, the boys' godmother came and we hung out with her for a while before meeting Doug for dinner at Outback Steakhouse. YUM! We had a nice meal with wonderful company.

Tomorrow there is no horse riding lessons as the owner and her family are at DisneyWorld...lucky them! So, we are hopefully going to be deep cleaning the house as it is in desperate need of a good once over. Wish us luck and send someone to help if there is no update tomorrow night...that means we were either overcome by cleaning product fumes or passed out from exhaustion or buried in the mess!

Take care and God bless!


Melody

Thursday, June 9, 2005 10:00 PM CDT

Nicholas sure is a little water baby! He loves the water about as much as a fish does. He could be turning blue, shivering, and freezing cold and still refuse to get out! He had such a good time swimming at his godmother's pool tonight...and this time the pizza was there and he ate a whole piece (minus the crust). I guess swimming is a very strong motivator to finish your dinner! Nathan got in too and lasted just a few minutes as the air was cool and the water warm and he got chilled in a hurry. I got to visit with some old friends/coworkers and it was a wonderful evening!

The rest of the day was pretty routine, except that Nicholas and I took Nathan for his first ever baby storytime at the library. He seemed to like it ok and I was so proud of Nicholas as he was SO good and sat by me most of the time. He was such a little caretaker, walking around and handing babies toys, shaking a rattle for a baby and making her smile, and showing Nathan the hello song puppet and singing the hello song to him. I was beaming with pride for the kind of person he is turning into. He even helped the story lady (who is one of his favorite people as he has been going to her storytime since he was 8 wks old) clean up after everyone left. Words cannot describe how much I love him...and Nathan, too! I look forward to watching them grow and seeing the kind of people they will become.

Guess that is it. My sis is supposed to come with the boys tomorrow and we are laying low for the day. Take care and God bless!


Melody

Thursday, June 9, 2005 10:00 PM CDT

Nicholas sure is a little water baby! He loves the water about as much as a fish does. He could be turning blue, shivering, and freezing cold and still refuse to get out! He had such a good time swimming at his godmother's pool tonight...and this time the pizza was there and he ate a whole piece (minus the crust). I guess swimming is a very strong motivator to finish your dinner! Nathan got in too and lasted just a few minutes as the air was cool and the water warm and he got chilled in a hurry. I got to visit with some old friends/coworkers and it was a wonderful evening!

The rest of the day was pretty routine, except that Nicholas and I took Nathan for his first ever baby storytime at the library. He seemed to like it ok and I was so proud of Nicholas as he was SO good and sat by me most of the time. He was such a little caretaker, walking around and handing babies toys, shaking a rattle for a baby and making her smile, and showing Nathan the hello song puppet and singing the hello song to him. I was beaming with pride for the kind of person he is turning into. He even helped the story lady (who is one of his favorite people as he has been going to her storytime since he was 8 wks old) clean up after everyone left. Words cannot describe how much I love him...and Nathan, too! I look forward to watching them grow and seeing the kind of people they will become.

Guess that is it. My sis is supposed to come with the boys tomorrow and we are laying low for the day. Take care and God bless!


Melody

Wednesday, June 8, 2005 9:58 PM CDT

WOOHOO!!! The laptop is back!! I am SO happy! I know I complain about this machine a lot, especially as it is not always reliable these days, but I sure do miss it when it is not here!

Today I went to the library with my sister and I saw what she meant when she always complains about it. It was WAY too long, they read stories that were too long for this age (and three of them no less!), the storytime lady was practically shouting, and she harped all the time about the kids staying quiet. I told my sis she needed to come to ours. The kids get to move around, play with a parachute, dance, sing, and do fingerplays and rhymes. It is faster paced and much more engaging. This one Nicholas barely made it through and I had a headache by the time we left. After, we went with the playgroup to the mall for play area time and lunch. Once we finished, my sis and I took the boys into a few shops for a short browsing. Then it was home for naps.

It was a pretty good day and thank goodness my nephew seemed to be feeling a lot better. Nicholas slept in the car on the way home and I was so glad he was sleeping, I sat with the car running in the driveway for at least 15 min once we got home to allow him more time to rest. Too bad Nathan cried and woke him...otherwise who knows how long he would have slept!

I may try to take Nathan for his first baby storytime tomorrow. I guess we will see how long it takes to get everyone up and going tomorrow and decide if we have time.

Hope all are well. Take care and God bless!


Melody

Tuesday, June 7, 2005 9:07 PM CDT

Nicholas' poor cousin was still vomiting today, so we did not go for a visit. We will see about tomorrrow, but I am not sure I am hopeful. He was pretty sick. We had a really boring day here. We laid low, hung out in our pj's and played, watched tv, snuggled, and Nicholas napped while I got on the desktop. I spent most of the afternoon trying to fix it as it was not working properly. I think a recently upgraded program had something to do with it, so after uninstalling and reinstalling the old version, things seems to be working again. I sure hope the laptop is back soon. It is in for repairs...has been since the 26th...and there is no sign of return yet. I am SO bummed.

Nicholas had some terrible diarrhea today...not quite dumping diarrhea, but close...so it looks like we may have to dillute the feeds again. We sure have hit a plateau with the weaning lately. We have been stuck at 6 hrs for WEEKS! At this rate he is going to be on the tube forever!

Nathan is feeding a bit better finally, so I think the thrush is finally improving some for him. We are to continue medicating through the weekend, so I am looking forward to then and getting rid of the extra meds!

Guess that is all for our boring update! Hope all are well! Take care and God bless!


Melody

Monday, June 6, 2005 10:18 PM CDT

Today turned out to be WAY busier than I thought! Nicholas and I were going to get together with a mommy friend and her son for a lunch date today and as they were pulling up to our house, Nicholas' DT knocked on the door. Luckily we were still home! Today they worked on dressing/undressing as he was still in his pj's and she also got to observe how he interacted with his little friend and they worked on turn taking and parallel play with different toys. After she left, we went to Pei Wei for lunch. It was quite an interesting lunch to say the least...the food was good and the conversation was as well. The boys were quite a handful however! I was glad to leave!

We left and Nicholas went down for a nap. When he woke, we called his little friend and they came back over to use the kiddie pool and sandbox. We had a good afternoon outside. After they left, we ate dinner outside as it was so nice out and then we ran to the store. We had not had a decent grocery run since Nathan was born, so we were really out of staples. We spent a ton, but hit some awesone sales and saved almost $75 by the end of the trip. Not bad...

Tomorrow we may go to visit my sister and her boys. One of my nephews was sick and vomitng today. We are hoping it was a 24 hr thing, but we will probably not take any chances. I will talk to her tomorrow before we decide.

Guess that is about all. Take care and God bless!


Melody

Sunday, June 5, 2005 11:36 PM CDT

It was a pretty blah day today...a typical Sunday. Got up, got ready, went to church, ran a couple of errands, came home, ate, napped, played, ate, and are ready for bed. Doug and I laid down while the boys were sleeping and we ended up sleeping for 2 hrs and woke only because Nathan was crying to eat. Nicholas slept a good 2.5 hrs and was in a much better mood upon waking.

We had planned on grocery shopping late this afternoon and had even clipped coupons while waiting for Nicholas, to wake, but once Nathan was done eating again and Nicholas was up and changed, there really was not any time. Oh, well. We are hoping for tomorrow night. All I know is that it had better be SOON or else we will be out of food to eat! We are scraping the barrel as it is right now!

Guess that is our boring update for today. Hope all are well and healthy. Take care and God bless!


Melody

Saturday, June 4, 2005 11:54 PM CDT

Nicholas did really well at today's horse show! He placed twice as a finalist and also got a first place and second place finish. They changed the classes up some and these changes affected 2 of Nicholas' classes. He and the other toddlers are now having to compete with the older kids (up to Jr High age) and this is affecting his placing for these events. He still had a great time and loves the ribbons he earns...no matter what the color!

We made our trip to the Blue Bell Ice Creamery again today while at the show...can't beat $1 per scoop ice cream! Nicholas asked for his favorite..pink ice cream, which is strawberry. Another favorite of his is banana, but they did not have any there today.

After we got back into town, we ran a couple of errands and grabbed dinner. That is about it for the day.

Nathan is finally getting over the Thrush. His mouth is looking a whole lot better and he is starting to feed better again, thank goodness! He was not gaining any weight and worrying me! I am doing ok too, and I think we will make it as long as we can keep the meds coming and kick this nasty infection! Nicholas, who gave it to the baby, most likely by putting the baby's binky in his mouth, is staying on a maintenence dose of Nystatin indefinitely to avoid this happening again. Between his immune deficiency and daily use of abx and inhaled oral steriods, he is at high risk for Thrush and is VERY susceptible to outbreaks. No sooner do we complete a round of meds for one and take him off meds, then it is back again in just a few days. We are hoping this will keep it under control.

It is late and I am pooped! Take care and God bless!


Melody

Friday, June 3, 2005 9:48 PM CDT

Nicholas never ceases to amaze me with the things he can do to freak me out! He nearly scared me to death today! I am not quite sure how we have managed to escape having trouble with this issue up until now, but today it finally happened. Now that Nicholas is 2.5 and getting to be very independent, he is not quite as receptive about us cutting up food as he once was, especially hamburgers, which are finger food anyway. He ate a bite bigger than usual (between nickel and quarter sized piece) and I trust him to judge size as he always spits out bites that are too big. He swallowed it and gagged, but seemed fine afterwards. It wasn't until about 45 min or an hr later when he tried to drink a few sips of juice did he start retching. This was way different from the dumping retching he used to do and it totally freaked him and me out. He would turn purple and gag very deeply and all the while he had this look of pure terror on his face (he has not vomited in almost 21 mos and not retched in 15 mos). Seems that that bite of burger got caught at the top of the wrap...an ok size to go down the esophagus, but too big to fit through the wrap he has at the top of his stomach and it got caught there. Finally he was able to get up a bit of the juice and he stopped. There was bits of bun in it as well, but no meat. After, he complained of pain at the bottom of the sternum, which I am assuming would be somewhere near the top of the wrap. We called the GI and he said he was hoping that the meat fell through the wrap when he was retching. He can now keep down thin liquids, but we were told to hold off on solids for several hours before trying those. He is still complaining of pain in that spot, but is acting like he feels ok otherwise (just like he does even when sick). I swear I am going to be gray soon with all the drama that keeps popping up with him!

My sister and the boys were with us at the time and she was freaking out, too! I was trying not to let it show so as not to make Nicholas more scared than he already was. People were stopping and staring and looking like they thought he was choking. Ugh! What a day! We had been shopping at the mall. We found a great deal on some adorable hooded beach towels..one lobster and one dolphin...for the boys and I got Nicholas a pair of pj's. That was about the extent of our day.

Tomorrow is another horse show in Brenham and afterwards, our usual trip to the Blue Bell Ice Creamery. YUM! I am drooling already! Speaking of horse show, we got a wonderful surprise in the mail the other day. One of the older kids who shows horses for HALTER had taken a pic of Nicholas last summer at one of the shows and it was so good, she decided to enter it in several photo contests at county and 4H fairs around Houston. Well, she won 2 first places and also a Best of Show for it. They decided to send us a copy as they thought we might like a copy. It is a beautiful pic of Nicholas in his western gear and a bit sweaty from the heat. He has a totally angelic look on his face looking off to the side while crouching down and he almost looks like a porcelain doll. It is wonderful! I could not be prouder!

Take care and God bless!


Melody

Thursday, June 2, 2005 10:37 PM CDT

Can I just say what a BLAST today was?

My sister and her boys came over and we went outside to the new patio and played all morning. With the fans on, there was a nice cool breeze and it was pleasant. The boys played with the bb hoop, sandbox, and we played Radio Disney and they were dancing along. We grabbed Sonic to go for lunch and ate outdoors before the boys went down for a nap. My parents came over for a visit and my sis and I ran to the store to buy a kiddie pool as we thought that might be a fun thing for the boys to wake up too. They were THRILLED!!! It has a built in slide and you would think it was DisneyWorld out there with the way they were laughing and smiling! We were having SO much fun just watching them that we did not realize it was almost 5:00!! Boy, everyone cleared out fast when we realized that!

For dinner, we were invited to the boys' godmother's apartment complex for swimming and dinner. We swam, ate burger delivery by the pool, and had a fabulous time. One of our friends had just come back from an educator's trip to Saudi Arabia and was regaling us with tales from her trip. It sure sounded like the trip of a lifetime! Nicholas had so much fun swimming and is a little prune now from all the water play today. Nathan went for his first swim and he seemed to enjoy it. He sure got cold fast though, but looked absolutely adorable in his little Hawaiian flowered swim diaper!

Tomorrow, we head out to my sister's again and hope to hit a big sale at the mall. She was also thinking of getting out her little kiddie pool as well, so we may have some swimming in store for tomorrow too...we shall see!

Guess that is about all for us today. Hope all are well! Take care and God bless!


Melody

Wednesday, June 1, 2005 10:34 PM CDT

Well, sorry for the lack of update last night, but the site was down for upgrades.

Yesterday was not what I had expected or wanted. Somehow, the roots of the tree in our front yard broke our water main and we had a huge leak in the yard. We had the plumbers by to look at it and ended up getting the pipes re-routed today as with the pipe running under the tree, it will just keep happening. This is already the second time. Oh, well. Even worse than that, one of the plumbers here to fix it today slipped on his muddy shoes in the back of his pickup truck and fell out onto the ground and broke his arm. The boys, their godmother and I had just run to the library for storytime and then for a quick lunch and by the time we had gotten back, they were already gone to the ER. One of the patio guys told us they wanted me to know where they had gone. Ugh. Poor guy! He looked like he was in a lot of pain by the time he got back and collected his things out of the company truck. Thankfully, the other guy was able to finish the job today and we had our water turned back on...otherwise we would have been out of luck! Our yard looks like a gopher lives here, but at least it is not leaking and we are no longer watering the neighborhood!

Speaking of the patio...IT IS DONE!!! It looks SO GOOD!!! Doug is outside finishing up moving things back onto the patio and putting the finishing touches on assembling the new patio furniture for us and for Nicholas. My parents, sister, and nephews are coming tomorrow, so I think we are going outside to enjoy the new playspace...comfy chairs, my craft desk, sandbox, BB hoop, slide, and more! WOOHOO!! We might even grill and eat out there tomorrow night! Can you tell how excited I am???

Doug and I both had dentist appts today and both had NO cavities! WOOHOO! Everyone at the office doted on Nicholas, as usual, and ooohed and aaaahed over Nathan as they had not seen him yet. He was the hit of the day, I think!

I also attended a transitional meeting for Nicholas' Early Childhood Intervention (ECI) as he is about to be three and we need to begin deciding if he needs further therapy through the school district or not. He currently gets Developmental Therapy and Occupational Therapy through them. We will begin looking into the referral process when school starts back in Aug, but this was a meeting to discuss services offered, the screening/testing/referral process, and the difference between ECI and School Based therapies. It was interesting and informative. Nicholas is doing really well, so it is entirely possible that he won't qualify for services anymore. Woudn't that be great??

Nathan came down with Thrush and I saw it in his mouth today. Bad news, especially for me, as he passed it on to me through nursing. Luckily, I think we caught it early and I am hoping it will be shorter and less painful for us both since we were able to begin medicating right away. Fingers crossed as I am really uncomfortable and he has not been feeding well.

Guess that is it for now. Take care and God bless!


Melody

Monday, May 30, 2005 9:41 PM CDT - Happy Memorial Day!

I guess I did not realize how tired we all have been since Nathan came home! After taking a nap yesterday and getting to bed from a late start to bedtime (thanks to Nathan being in a snacking mood), we ALL slept in until almost 11:00 am! Doug and I were up with the baby until about 2:40ish and then slept until 7, when we gave him meds. We then were up for his feed at 7:30 and Nicholas woke up. It was too early for him to be up then and so Doug asked him to go back to sleep and he did. I woke him up at 11:00 this morning. We could not believe how much we slept, but boy did it feel GOOD!

Sleeping in kind of shot the day, so we had to reorganize the day and made a trip to the mall, where we ate lunch and ran a couple of errands. We then went to a different Target, where we found the rest of the chairs and the table to match the one chair we bought at our Target yesterday. We also found one more toy bucket in another color and matching the table set as well, so I think we are set. Now, just one or two more days until the cover is finished and we can start enjoying playing, eating, and spending time out there!

Later, we met the boys' godmother for dinner and had a yummy meal at Saltgrass Steakhouse. Now, we are wrapping things up for the day and getting ready to hit the hay. Hope everyone had a wonderful Memorial Day weekend and took a moment to remember the servicemen and women overseas right now and those who gave their lives defending freedom and our great nation. Take care and God bless!


Melody

Sunday, May 29, 2005 9:51 PM CDT - Nathan's Baptism!!

We got through the baptism today without any major problems!! Nathan looked like a little angel in his little white outfit and he was so good. The minister joked that he was a "Good Methodist" already as he slept through the entire baptism and service! Nicholas looked like a doll too as he was wearing a blue outfit with a white rounded collar and double breasted white buttons. The shirt buttoned into the waistband of the shorts with 2 bigger white buttons and he wore white dress socks and white shoes. He was also very well behaved until after the baptism (when he went to the nursery) and did not make a peep while up at the alter in front of the congregation. He was, however, quite concerned when we left Nathan up there with the minister for a min so he could walk around and show him off to the congregation...Nicholas kept an eagle eye on the miniter the whole time until Nathan was safely back with us. What a great big brother!

After the baptism, we all headed out to Texas Land and Cattle for lunch. We had made reservations as we had quite a large party...2 sets of grandparents, 2 sets of anuts/uncles, 4 cousins, 1 godmother, 1 close family friend, and the 4 of us. Unfortunately, 2 close friends could not make it as one just returned home from a trip to Saudia Arabia last night and was terribly jetlagged and another friend was out of town with friends. We had a wonderful lunch despite the terrible service. The service was very disappointing as we had such a good experience when we dined there after my nephew's baptism in Nov.

We got home and were so tired, ALL of us hit the hay and had a nap. It was great napping weather as it was overcast and dark. For dinner, after waking, we picked up the boys' godmother and went out for ice cream (since lunch was SO late). Then, we dropped her back home, went to run some errands, and found an adorable kid's outdoor dining set with slingback chairs (very similar to our new set, but with kid's print) at Target. We decided to buy it for the new patio. We also found a huge plastic bucket with rope handles I think will be perfect for storing all the outdoor toys we are sure to accumulate now that we will be outside more. It was a very productive trip there.

I am so looking forward to Doug having the day off tomorrow. We will see what we can do as the zoo was a suggestion...too bad the forcast is for rain. We will have to wait and see what the day holds. Take care and God bless!


Melody

Saturday, May 28, 2005 11:48 PM CDT

What a marathon day! We woke, showered, got the boys up and medicated, trimmed Nicholas' hair, got both boys in the bath, and everyone dressed and we left for my nephew's birthday party. The party was fun and the kids dug for dinosaur eggs (little plastic eggs with toy dinos in them) in the sandbox, played pin the tail on Barney, and everyone ate hot dogs with all the trimmings and cake.

After that, we hopped in the car and headed out to Doug's parent's house for a visit. While there, we checked out the construction on their new house, Doug helped his dad run an errand, and the guys tried to take Nicholas to the pool...too bad someone pooped in the pool and it was closed. We then left for the Yacht Club in their neighborhood for a crawfish boil/dinner buffet and ate ourselves silly. The food was GOOD! We left from there to come home.

On our way home, we passed by the most horrific accident I have ever seen in real life. A minivan with a mom and her 2 daughters was rear ended by a sports car going 90 mph on the freeway feeder road. A good samaritan stopped to help and he was hit, too. The driver of the sports car was pronounced dead at the scene and it looked as if there was no way he could have survived as the front of his car was totally gone. The guy who stopped to help and one of the little girls were each life-flighted out to the med center and we did not hear the condition of the mom and other little girl. It sure made me realize how lucky and blessed we were that our accident was not very bad...it could have been SO much worse and at least nobody was hurt. Please pray for the poor innocent victims of this accident that they will all survive and be ok...they were just in the wrong place at the wrong time.

Tomorrow is Nathan's baptism at church and we have already put the outfit in the car!! Long story, but we accidentally left Nicholas' outfit at home the day of his baptism and Doug had to run home to get it and we barely made it in time for the baptism to be before the sermon at the end of the service! We are so NOT going to let that happen again! Talk about stress!

Time for bed as it is a busy and important day tomorrow! Take care and God bless!


Melody

Friday, May 27, 2005 9:51 PM CDT

I think we finally have everyone sorted as to what is being worn for the baptism. I have had a heck of a time finding a nice, inexpensive outfit that looks good on a post-pregnancy body and my feet have outgrown all my dress shoes, so I have been on a hunt for new shoes and a new outfit. I hit a great sale today and found both all in one stop! My sister and I hit the mall as the neverending hammering and sawing was really starting to wear on me. The guys did really well while I was gone and everything was cleaned, put away, and tidy when I returned. They had already finished for the day. We were told earlier today it should only be 1 or 2 more days until they are DONE!!

My parents came over and spent some quality GRANDSON time as my mom is finally finished for the year. She is out tonight drinking her celebratory "End of the School Year" margarita!

Nicholas got some new shoes today as he STILL fits into his sz 6 tennis shoes that he started wearing LAST summer! Needless to say, they are looking a little bit worse for the wear as kids this age are not expected to wear the same shoes for a whole year! We pulled out his sz 7's and they were still HUGE! 2 thumb-widths and they should only be one. I went a measured his feet at the Stride Rite store today and wouldn't you know, they measure 5.5! So, I relented and got sz 6.5. He will grow into the 7's eventually, but boy was I surprised that his feet are growing SO slow! He was so happy with his new shoes though, so I cannot complain.

He also had a minor accident tonight...he fell out of a store cart onto his head. Doug was behind the cart and Nicholas was behind the baby carrier at the other end. He has a knot on the top of his head and we have a call into the ped right now, just to be on the safe side. His pupils are the same size and he his acting fine, so I am not TOO worried, but I also know that he has a really high pain threshold, so I am not taking chances just because he is acting fine as I know he most likely would not tell us if it were hurting badly. Guess we will see what happens.

Tomorrow is the start of a busy weekend...birthday party, crawfish boil, baptism, and who knows what else? Guess I will end for tonight so we can hit the hay early tonight. Take care and God bless!


Melody

Thursday, May 26, 2005 10:02 PM CDT

The patio cover now has shingles! Just in time too, as it started raining literally moments after they finished! At least they got to have a good look at a couple of places where the cover was leaking and could fix it. They think they will be done either next Tues or Wed. I am glad as the constant hammering has been giving me headaches!

More good news!! Our car is fixed and back home! It looks great! I am just glad to have this mostly over. We even got to save money on one day's rental for the rental car!

Sad news...my laptop is officially dead AGAIN! There is a pin in the socket where the power source plugs into the laptop and that pin gets loosened up over time and will not allow the power to charge any longer. I have been fiddling with the cord for weeks now, working at finding a "sweet spot" and hoping that I can keep it on cord power instead of battery. Well, there is no more sweet spot and I had to take it in for repair. This is the second time this has happened, so we knew what it was when it was turning bad. I hope it will be repaired really soon....I miss it already.

Both boys had a rough day today with not feeling well. I am so ready for this all to be over with as far as illness goes. They are both miserable, which in turn makes me miserable as well.

Guess that is about all for today. Take care and God bless!


Melody

Wednesday, May 25, 2005 9:26 PM CDT

We have a roof on the patio over now! Things are moving right along now, thank goodness! We were beginning to feel like we would never be able to get this ball rolling and have the cover completed. We had some issues with the breakers being constantly tripped today. The guys had too many power tools plugged into one outlet, I think. Once they got past that part of the building, things went a lot more smoothly.

It was another slow day here at home. Nathan is doing a bit better now that we are trying to keep him medicated around the clock. He will eat normally if his acid is well controlled, so we are giving him Maalox around the clock until the Prevacid kicks in. I am hoping it will be in a week, but it coild be 2 or longer than that. Fingers crossed that it is sooner rather than later...por baby needs some relief. Now that he is eating more normally, my plugged duct is slowly resolving as well. Thank goodness for that! Both boys are still very snuffly, but Nicholas seems to be faring better as he is on additional breathing treatments and also decongestent. Nathan is not taking anything as he is very young still.

We got Nathan's baptism outfit today and he looks like a little angel in it. We were lucky that a saleslady there told us last week that the entire store would be on sale starting today...and with the price of things there (Strasburg Children's), any little bit sure helps! Luckily as well, that store is an outlet, so even better! Now, to decide what Nicholas is going to wear....

I guess that is about it for today. I am really looking forward to the patio cover being done! The house is already shadier and cooler than it ever has been. Take care and God bless!


Melody

Tuesday, May 24, 2005 9:04 PM CDT - Welcome baby James!!!

They finally started!! The contractor fired the framers and brought his crew out to do it themselves today. They do framing too, but usually hire it out as the framers are a lot faster. I don't care if it takes longer as long as someone is working on it! The framing is almost complete...a few more roof beams and it is done. Nicholas spent most of the day camped out in front of the door watching them. What a show for an intrigued 2 yr old! I put out a jug of ice and water with a tap on it and some cups for the guys and they were all acting so surprised, like I had done somethng really unexpected. One of them was about to leave to go BUY some water! It saddens me that, in this day and age, people will put out water for a pet, but not offer some to hot, thirsty people doing work at your house. That does not seem right to me for them to have been so grateful for the drink...it should just always be done...water is free from the tap for goodness sake!

He had DT today and it was hard for him to tear himself away from watching long enough, but he managed. He did well with the new DT today and I think he is finally warming up to her.

Nathan is doing better today...mostly because we are trying to keep his acid under control at all times BEFORE he tries to eat. He has been nursing much better today, thank goodness. I am getting another plugged duct from the feeding issues he has been having the past week. Ouch!

Both boys are still junky and snuffly, but acting like they feel a bit better. They have passed this lovely cold of theirs on to me. Thanks, boys!

Guess that is all for today. Take care and God bless!


Melody

Monday, May 23, 2005 9:49 PM CDT - Happy 2 month birthday Nathan!!

Nathan is 2 mos old today!! My baby is growing up!! He is just beginning to smile and he has not quite gotten the hang of it yet, but he sure is trying! We are not seeing it much today though as he has been sick with a cold and VERY refluxy (is that a word??). We had to call the GI this morning about him and the GI felt strongly enough about his pain and eating issues of late that he put him on Prevacid for one dose a day and we are to keep him on the Zantac for 2 of the 3 previous doses per day as well. He also added another dose of Miralax as Nathan has been having pooping issues as well. I sure hope this gives us back our smiling happy baby as this crying, squirming, uncomfortable one is breaking my heart!

Nathan went to the ped today for his 2 mo check. He weighed in at 10 lbs 10.5 oz and the 25th %ile, was 23 in long and the 50th %ile, and his head was 15 in and the 10th %ile (just like his big bro!). His hips are still really loose, but nothing to worry about and his jaundice is now about 95% gone! He got 4 shots today, poor baby, and turned SO purple from not breathing while he received the shots. He was SO mad! Nicholas also had to be looked at too as he woke and the first thing he said to me this morning was "Dr see"? and I asked what the dr needed to see and he told me "dr fix yucky nose". Now what 2 yr old ASKS to see the dr? He also has a cold and will be back on decongestant syrup and extra breathing treatments for it. We are hopeful he will fight this one off like he did the last one.

Nobody came by today and we STILL have a lumberyard in the driveway....can you tell how mad I am? UGH! The builder said he would fire the framers and do it with his guys himself tomorrow, but it will take longer. Who the heck cares as long as they are working??

Doug got the rent car today and it is actually not bad...a new Toyota Corolla. We should have it through Fri and we will see from there what we will do about keeping it or not for another few days. Hope our car is done by then!

The GI also said he thought that taking Nicholas toJohns Hopkins for a second opinion for both GI and Immuno sound slike a good idea and says it is especially good for kids with as complicated problems as his are. Now, we just have to figure out how to go about scheduling it all and deciding which drs to see there. Hope we can get the ball rolling soon.

Guess that is about all for us here. Take care and God bless!


Melody

Sunday, May 22, 2005 10:13 PM CDT

To say that I am mad would be a serious understatement!! The framers never showed!! We were up early, missed church, and sat around here all day waiting. There is not even a confirmation that they can or will be here tomorrow. Meanwhile, we have over $2000 worth of lumber and building supplies sitting in the driveway waiting to be messed with. UGH!! I am hoping to have a better report tomorrow. At least we will have a rental car tomorrow and they should be starting the repair on my car from the accident.

It was a fairly boring day around here. Not much to tell about. Nathan has had some terrible refluxing days here the past few days. He refluxes over and over again one right after the other, coughing and choking the whole while. I am wondering if he does not need to try Prevacid or Prilosec instead of the Zantac. You can bet we are putting a call in to the GI tomorrow. Nicholas had a poo-poo accident in the bathtub tonight for the first time and really freaked out sobbing thinking he had done something wrong. We tried mostly unsuccessfully to reassure him it was an accident and it was ok, but I think his reaction was spurred mostly by exhaustion and he was not able to calm much until he was back in a diaper and felt better. Poor baby. He was so tired, getting ready for bed took 5 times as long. That made the tired even worse as it was late when he did finally get to bed. I hope tomorrow he feels more rested and better able to cope.

Please keep my sister, her husband, and his family in your prayers if you can. His grandmother had an acute attack of pancreatitis and is in critical condition after surgery. She is sedated and unconscious and on full life support and dialysis for kidney failure. They not hopeful for her outlook, unfortunately. Ironically, this is almost the same thing that happened when Doug's grandmother passed here in town almost 2.5 years ago. Although her surgery was for her heart instead, she had the same issues post-op and the similarities are almost eerie.

Take care and God bless! We are hoping to have a much better report tomorrow!


Melody

Saturday, May 21, 2005 11:14 PM CDT

Well, we sure had a quiet, laid back, and relaxed dinner tonight. It seemed so odd to be there without kids. We had crab legs, which are our favorites and also which we NEVER get anymore as it takes WAY too long to eat with an impatient toddler who does not eat much! Doug's parents took the boys to 50's day at the local Sonic for dinner..they had 50's music, dress, and 50 cent corn dogs, fries, tater tots, sm drinks, and ice cream cones. We gave them money for them all to eat and Nicholas did well, eating a whole hot dog out of the corn dog breading, some tater tots and fries, and drinking quite a bit of lemonade. While they were here, his parents also gave us our aanniversary gift...money to buy our patio furniture set. They drove the truck so they could help us get it home. It is now sitting in the garage (where the car used to be!) and we sure cannot WAIT to use it!

Speaking of patios, the framers will be here TOMORROW to begin work on the cover!!! Seems like we have been waiting forever, but the time is actually here! We have a ton of lumber, hardiplank, shingles, and plywood in the driveway right now. They are to be here bright and early around 7:30-8. Hopefully, it will be done before the week is out.

We also had another lucky find on the way to Nicholas' riding lesson this morning...a hard plastic desk with built in light, sitting at a garage sale, that will be perfect for craft work and I am hoping to put it outside on the patio now that it is covered as maybe I can get Nicholas busy in the sandbox, Nathan going in the swing, and have some precious time to do some crafting. I have not had any time to do anything really since Nicholas was born. We will see how it works out.

At Nicholas' lesson we learned some exciting news....friends of ours who have a son who rides there as well were able to adopt a baby girl this week! They got the call about her on Mon, went right up to see her in the NICU that day, and brought her home on Wed! She was born at 31 wks and 3 lbs and was released at 3 wks old and 4 lbs. Boy, is she TINY! She looked just like a little doll and she is SO pretty! Both proud parents were beaming when they brought her up to the pasture to show her off!

Guess that is all for our update! Hope all are well! Take care and God bless!


Melody

Friday, May 20, 2005 9:43 PM CDT - Happy Anniversary to my sweetie!

Well, it hardly seems like it has been 10 years since we got married! We have sure had our ups and downs, but it has been well worth the effort! We have had time to travel and enjoy each other and work at establishing our careers, and now we have 2 beautiful boys to show for it. We certainly are blessed! I love you, sweetie!

Today we finally heard from the insurance adjustor about the car. Looks like we will be repairing the car to the tune of almost $2,900. They found something wrong with the back right wheel and I am pretty sure that was there for at least a week before the accident, but they did not know that and are fixing it as well. Guess we might as well get our money's worth out of this bad situation. They are also going to be doing the state inspection at the same time so that we do not have to keep the car out of commission for more time than we have to. This will eliminate the need to take it in another day for this. Doug looked into a rental car and we are hoping to get an economy car on Mon and keep it through Friday. There is no need for us to pay for one over the weekend....this one or next for that matter. They were anticipating the repair taking 7 days and will start on Mon, but who knows...we may get lucky and have them done sooner than that. We can always dream!

Doug and I took the boys out for a nice dinner for our anniversary tonight, but will have the first meal to ourselves with NO kids since before Nicholas was born tomorrow night as Uma and Papa have graciously offered to babysit! With the exception of lunch with my parents at the hospital while Nicholas was in surgery, we have never had a meal out to ourselves since we had children. I am kind of looking forward to it, but I think it is going to feel so strange to not be hushing a noisy toddler, fussing when he drops food or his fork on the floor, or busily trying to keep him occupied while waiting for the food or for us to finish eating. We can actually eat without shoveling it in thinking we should have left 10 min ago! That is all we know now. After dinner tonight, we went out for ice cream and Nicholas came home covered in Strawberry ice cream after finishing eating it and thoroughly enjoying every bite!

Guess that is about all for today. If you have not taken a moment to check out Nicholas' Quilt of Love at the link below, please do...it is wonderful! Take care and God bless!


Melody

Thursday, May 19, 2005 7:51 PM CDT

Today was a much calmer day with regard to the accident, but it sure was quite something with all 4 boys here. My sister came and brought her boys for a visit since we have no car. We decided to walk to the neighborhood park and play for a while and we took some bubbles to blow and play with as well. Everyone had a good time bubble blowing, swinging, sliding, climbing, and running around being silly. It was fun, but sure was warm! All I can say is that summer is here already!

My parents came over for a visit late this afternoon and we all went to dinner together as my parents rarely get to eat with all of us at the same table these days. The boys were pretty well behaved (as well as 2 yr olds can be anyways!) and we all had a yummy meal of chinese food and fortune cookies.

Nicholas got his Quilt of Love in the email today and I posted the link below if anyone is interested in looking at it. Thank you so much Angel Jean for making this special quilt! It is so wonderful and Nicholas just loved looking at it!

Doug is out mowing right now and I am trying to keep the peace in here, so I guess I will end for tonight! Be sure to check out that beautiful quilt! Take care and God bless!


Melody

Wednesday, May 18, 2005 10:24 PM CDT -Happy Birthday Amy!

Well, today was not much better. Being housebound was not much fun...WAY to reminiscent of bedrest and dealing with the insurance was really not fun at all. Meanwhile, while trying to sort all these things out over the phone, I had to deal with a crying, fussy baby and a toddler who wanted my full attention. What a day!

I was so stressed yesterday about the accident that I forgot to tell about how the surgeron's appt went for Nicholas' button change. We paid a $25 copay for the surgeon to spray numbing spray on the stoma and take less than 10 sec to change it out! Oh, well....at least is was not at all traumatic for Nicholas. I asked for a prescription of the numbing spray for future button changes and he readily gave me one. He told us to come back in a year if Nicholas still had the button to get sized for it and make sure he was still in the correct size button for his weight and size. Nicholas left from there with a new ball that had an eyeball sticking out of it. He calls it "Mike", named after the monster from Monsters, Inc. that he has been watching in the car.

Guess that is all for today. I am going to bed. Take care and God bless!


Melody

Tuesday, May 17, 2005 11:16 PM CDT

Ugh! What a terrible day! I am going to make this short as I really do not want to have to rehash this day anymore than I have to. I had a car accident today. Thank God that we are all ok, but the poor car did not come out of it very well. Here is what happened. I was driving in the car towards an intersection where I had a green light. Nathan started screaming, so I reached back to grab his binky and put it in his mouth. For some reason I took my eyes off the road for a second and when I looked back, the light was changing to red and I was there at the intersection and had no way to stop. I hit a lady driving into the intersection. She was not hurt either, Thank God, and we did not hit too hard as no airbags went off. Her car was not badly damaged, but mine is currently undriveable. Everything below hood height on the front of the car is missing or badly damaged. I am now without a car and tomorrow we hope to have a rental car through insurance. The car is now sitting down at the Saturn body shop in town waiting to be looked at in the morning. Luckily, I was not far from my sister's house when it happened (I was on the way home) and when I called, my brother-in-law told us he would be right there to get us. He really came through for us and I cannot explain how thankful I am that he was so good to us and came right over to help out. Doug was still coming from across town and could not be there for me right then. I am stiff and sore, especially my neck, and have a bad headache, so I will be watching the boys closely tomrrow to make sure things look ok with them.

If you could spare a thought or prayer for the other driver and also for the boys, I sure would appreciate it. take care everyone and God bless!


Melody

Monday, May 16, 2005 11:12 PM CDT

We had a nice surprise today....Doug's mom came over for a visit as she was on our side of town for a dr appt. Nicholas enjoyed seeing his "Uma" as he calls her now and Nathan spent some time getting to know her as well. We went out to Mickey D's for some lunch and Nicholas ate 1/2 the burger, some fries and some apple slices also. After lunch, we went out into the sticks to find this place that makes outdoor kitchens to inspect the custom grill unit his parents had built for their new house. It was really nice....gray slate colored tile with some tan in it and tan stucco with a stainless grill, drawers, cabinet, and steel frame. It was really nice and even had outlets in it for an electric skillet or fry daddy. They are sure going to love that new toy when their house is done!

We go to an appt with the surgeon tomorrow as after the last button change, I am so wary of changing it here at home and having to race down to TCH once again for a dilation. His stoma is really reactive and touchy these days. Nicholas was pretty traumaized after that and I sure cannot do that to him again. I want to let someone who has the ability to fix any problems should they arise to do it this time. It will be SO worth my $25 copay to make sure it is easy on Nicholas and we do not have to rush downtown to the ER. After that, who knows what we will have going on. I guess it depends on how the appt goes.

Guess that is about all. Take care and God bless!


Melody

Sunday, May 15, 2005 11:20 PM CDT

All I can say is that bedrest took a lot more out of me than I thought! Nicholas was invited to a birthday party today at Pump It Up, which is a place where they have rooms full of those inflatable bounce houses, slides, and obstacle courses. It is pretty fun and safe as the equipment is all inflatable and pretty forgiving if you fall or run into it. I tried to help Nicholas through this obstacle course as he was pleading and Doug begged off for being tired. I nearly did myself in with that one run through. Oh my goodness am I out of shape! Other than that, the party was fun. We ate pizza and had cake and ice cream. Nicholas was picky and ate only a couple of bites of pizza and cake and would not touch the ice cream. He asled for banana ice cream (which they did not have) and then would not eat it after he found out there was none. After a nap at home, we ran a few errands and had dinner at Sweet Tomatoes, a salad bar place. Nicholas was still picky, but a little less so and ate a little more than at lunch. Needless to say today was not a good eating day around here. Oh, well....it is a work in progress.

I gave the older boys haircuts before the party this morning. Doug had it all set up and I picked up the clippers and made a pass through Nicholas' hair. I then realized it was cutting off WAY more than it should. I thought it surely had not been THAT long since I had cut his hair for that much to need to be cut off. It was then that I realized Doug had put the wrong clipper guide onto the clippers. Instead of cutting it to 3/4 in like it was supposed to, it cut it down to 1/4 in!!! Needless to say once the first pass had been made, it was too late and had to be all cut that short. Nicholas now has a buzz cut. It still looks cute as he got several compliments today on it and luckily he has a nice rounded head, so it does not emphasize an oddly shaped skull. All I can say is that it will grow back eventually!

Guess that is about all for us today. Hope all are well. Take care and God bless!


Melody

Saturday, May 14, 2005 10:15 PM CDT

We had such a great day today! Nicholas had his HALTER horse show today. He did really well, winning a grand champion ribbon and also 3rd and 5th place ribbons as well. Doug and I got entered into the parent event somehow...called "Hasn't got a clue" and we had to try to lead horses through an obstacle course without any practice or training. Somehow, I ended up getting a really well trained horse and got 2nd place out of about 18 parents! I don't know who was leading who...me or the horse! Doug got 4th place, so it was a good day for all! Nicholas also ate almost a whole hot dog again for lunch. He seems to have one really decent meal a day these days...no complaints here!

Once we all got home, we put Nicholas down for a nap and Doug started a load of laundry while I fed the baby. Then the 3 of us laid down to see if we could catch a quick nap too. 2 hrs later, we woke up from a hard sleep to give the baby his meds and dozed off for a few more min until Nicholas woke. Doug got him and brought him to bed too and all 4 of us snuggled for a while in our bed. It was nice.

Tomorrow, we have an early morning so I can give the 2 big boys haircuts before going to a birthday party for a little friend of Nicholas', so it is time for bed here. Take care and God bless!


Melody

Friday, May 13, 2005 10:55 PM CDT

Happy Friday the 13th!

Today was mostly a good day for us. Nicholas ate about 1/2 a cheeseburger for dinner along with a few fries. That has to be a record for him with a burger. We had gone to Sonic for dinner and eaten outside there in the nice breeze. It was a really nice time.

We also had gone to see my sister earlier today and meet some other mommy friends for a playgroup there at the park. One of the mommies brought her son there a few min before we arrived and he threw a tantrum and they had to leave before we arrived, so we missed seeing her, but another friend came and she was having a bad time of it. She needed to talk and dropped the bombshell that she is divorcing her husband due to infidelity. She is still in shock and really needs a lot of good thoughts and prayers right now. At least the rest of the playdate went well and she seemed to be able to keep her mind off things while the kids played. Nathan slept in his carrier the whole time, but Nicholas was a busy little guy. This park had water features that sprayed water and he thought he would like to put on his swimsuit and play in the water with his cousin. I watched him mosey on over to where his cousin was playing and turned my attention from him for a few seconds. All of a sudden I hear this blood-curdling screaming and then MAMA!!! I looked and saw Nicholas in the middle of this metal corkscrew with water spraying all around him, frozen there in the middle screaming and dripping wet. He has never been able to handle spraying water and I was sort of surprised he wanted to go over there and even get into his swimsuit, but it looks like the fear is still there. I ran over and was prepared to run in there and soak myself to rescue him as he was literally frozen there, but I called to him and he seemed to be able to unfreeze himself long enough to come to me. I wrapped him in a towel and he clung to me sobbing. He then decided he wanted no part of the water again and wanted OUT of his bathing suit. After that, he was really clingy and stayed close to me the rest of the day. Needless to say, for this cuddle deprived mama of an independent 2 yr old, I was not about to complain! He seems better now.

Guess that is about all. If you have a spare second, my friend could really use some extra thoughts and prayers right now as she tries to work through this rough spot as best she can. Take care and God bless!


Melody

Thursday, May 12, 2005 8:58 PM CDT

Great news at our house today!!!

Nicholas ate a WHOLE hot dog (minus the bun, of course) all by himself for dinner!! He also ate several french fries and a small bowl of strawberries and bananas for dessert!!! I am SUPER proud of him! I hope this keeps up! We need some positive news about him for a change.

Nicholas also had a really good session with his OT earlier today. She had a last min opening and needed to reschedule next Wed's visit, so she came out today to work with him. They did puzzles and played with PlayDoh. I am really happy that he is finally able to touch the PlayDoh and actually be ok with it now. Before, his sensory issues would kick in and he would not be able to do more than poke it a few times and he could not go any farther. He is making such fabulous progress and I could not be prouder!

Nathan pooped on his own today! Doug did not have to break out the rubber gloves and suppositories tonight to help him. That was also good news. He is going to be hard to get to work on tummy time as he rolls onto his back every time I put him down on his tummy. The OT was so impressed with him as he has been rolling from front to back for the past 3 wks and he just turned 7 wks yesterday. I have had our eyes opened to just how low tone Nicholas' muscles were when we have seen what Nathan can do. Nicholas did not roll like that until after 4 mos.

The final bit of good news today is that we got a letter of approval from the HOA architectural committee that we are approved to start with the patio cover. FINALLY!! Looks like the builder will be able to start on it early next week. I am so happy! It will be so great to be able to use that area at any time of the day, have the cover to keep the west sun from streaming in and making the house so hot and expensive to cool, and also to have a covered place to kick out all the outdoor toys like the trike, wagon, balls, bubbles, and riding toys. It is going to be a virtual playground out there really soon!

Guess that is about all. Hope all are well! Take care and God bless!


Melody

Wednesday, May 11, 2005 9:17 PM CDT

My goodness what a day! My head is still pounding. The baby has had a terrible day in terms of reflux and crying. He has screamed most of his awake time. Nicholas has been very needy as the crying is hard for him and he does not get as much of my time as usual when the baby has a bad day. His aquarium woke him up unexpectedly in the middle of a nap and basically terrified him. He was sobbing MAMA when I got in there and pointing to it with his eyes wide open. He could not go back to sleep and was really clingy, so I went and laid down with him for about an hour and we watched Oobi and Dora and snuggled. It was SO nice and I think we both sorely needed that time together. He so rarely wants to snuggle with me anymore now that he is independent and a "big boy". He has better things to do! Thank goodness the baby was sleeping as I knew he needed time for himself with me right then and it was not a good time to have to share me. I was never so glad for 5 to come and knowing Doug was on his way home. Nicholas is now giving him a hard time getting ready for bed as he is so overtired from having less than 1 hr of nap today. Mama is drained, too, as I did not get any down time at all after feeding the baby before he woke and needed me. I was hoping for a nap. Oh, well.

On a more positive note...we FINALLY got approval from the community assn and the architectural committee to go ahead with the patio cover. Seems the shingle sample and paint chip met their rigorous guidelines. Thank goodness as I was beginning to feel as though things would never get started, let alone finished with this. We have ONLY been working at this since FEBRUARY! Looks like the contractor may be able to begin next Mon or Tues. Fingers crossed!

I am tired and ready for bed. Take care and God bless!


Melody

Tuesday, May 10, 2005 9:41 PM CDT

We heard back from the GI today and will still need to talk to him again tomorrow, but he actually interviewed at Johns Hopkins and knows some people there. That is a good sign! Unfortunately, they do not have a moility specialist there like they do in KC. They have the ability to do the testing, but no specialist there to read/interpret it. I am wondering if there would be a way to send the tracings to KC to have the specialist there look at it to be sure we have a motility specialist involved. He was happy at the thought of looking at how the immunological and gastrointestinal issues are intertwined, but still has some reservations. We are going to ask him some more questions tomorrow as he is not sure the tracings they can do there for the manometry testing are the basic or more involved ones and wants to be sure Nicholas gets the right kind of testing done. I am hoping he can email or call someone he knows there and have a chat with them to see exactly what they can offer and how they can help and see if he feels a bit better about it...and also if we can involve the specialist in KC if need be and they do not have one there. I hope this will work out for Nicholas...still keeping my fingers crossed.

Today my sister came over and we went to a Dscovery Toys open house our friend was having. We got to see her and her new baby, who is about 6 wks older than Nathan. I bought Nathan a crab rattle and we visited with friends there. We swung by Mickey D's on the way home and picked up lunch for everyone before going back home to eat and nap. After that we took all 4 boys to the grocery store. Remind me to NEVER do that again! My head is still pounding from the chaos...all 4 boys in ONE cart!! In the midst of the noise and ruckus, my sister was so flustered, she grabbed her bag of baby food and the handle broke and the bag dropped to the floor where all 5 jars of food broke. The manager was nice and let her replace them at no charge...especially since they did not double bag them and the handle broke.

Upon returning home, we met my parents and I cooked dinner for everyone....spicy corn flake crusted chicken, steamed new potatoes, green beans, and strawberry shortcake for dessert. YUM! We ate a lot and Doug got all the boys bathed while my mom and I cleaned up. My sister packed up the car and after everyone was dry and diapered, everyone loaded up in their cars and went home. Whew!!

I am beat and ready for some sleep! Take care and God bless!


Melody

Monday, May 9, 2005 10:33 PM CDT

Well, lucky for the immuno he called us today! I was starting to get worked up about that. Anyways, he was not overly thrilled with the labs, but said that none of the changes either direction (better or worse) within a certain range does not make much of a difference. None of the changes were so great that they fell outside of this range, so it was more like no change at all. I was ok with that, but it still does not explain why they are not getting better. He said it could take a matter of several more years before it resolves. Ugh. At least Nicholas has not been sick a lot or sick with anything major (aside from RSV) thus far. We also asked, for our information as well as for the GI's also, whether or not these low numbers had anything to do with Nicholas' GI issues. He said about 10-20% of people with low numbers also have the GI issues and it is like the chicken and the egg. We do not know which is the instigator that affects the other, but once the cycle gets started, it is hard to break out of as the one always makes the other worse. So, when we mentioned that the GI was sending us to KC for the motility testing, he asked whether the testing could be done at Duke or Johns Hopkins because he could refer us to their peds immunology clinic there for more testing and to also have their immunos and GIs who test Nicholas get together afterwards and discuss his results, current treatments/meds and see if there is anything that we are missing or things we should change to help improve things for him. Come to find out Johns Hopkins does the manometry testing he needs and since we would have to go out of state anyway, it would be the same for me as going to KC, or anywhere else for that matter. All I know is that this sounds like the best shot Nicholas has to figure out if and how this all might be related and how we hopefully can FIX it! We now have a call into the GI to run this past him to see what he thinks of it all and we will call the immuno back and go from there if the GI is in agreement that this is a good idea. Cross your fingers for us!

As for the increase in laxative...WOW! Nicholas sure is FULL of stool! He went 3 huge diapers today and I am sure there is more where that came from! No wonder he has been having issues! He seems to be WAY backed up. I sure hope this helps things for him. The increase in appetite stimulant seems to be working as well....he had almost 4 whole chicken nuggets from Chick-fil-a for lunch! Hope that keeps up as well!

We went to see my sister today and did some shopping. Found some great deals and had a fun time at the mall eating and playing at the play area. After naps, Doug came over after work and we all went to dinner at Cheesecake Factory. Her hubby is out of town and we thought she might like some company for dinner. Oh my, dinner was SO good! I had a piece of Godiva chocolate chesecake for dessert..layers of dk choc mousse, lt choc mousse, choc cheesecake with choc crust, choc coating over the whole thing, choc drizzle, whipped cream, and a square of Godiva choc on the top. SO to DIE for! Doug had fresh strawberry cheesecake and my sis had brownie sundae cheesecake. We left out of there feeling so full we were bloated, but BOY was it GOOD!

Guess that about does it for today. Hope all are well! Take care and God bless!


Melody

Sunday, May 8, 2005 9:03 PM CDT - Happy Mother's Day Everyone!

What a nice day today was! My very first Mother's Day with the whole day all to myself! We woke and went to church, then off to the Galleria for a bit of shopping. Needless to say, today I did a bit of shopping for my favorite things....clothes for my 2 special guys! They were having a great sale at Gymboree and what mama can resist that? We grabbed a light lunch and had a good time just looking around and spending time with each other. We left from there and had already decided to go to Benihana's for dinner. We had 4:30 reservations and got there right on time, despite the terrible weather...rainy, gray, and turning cooler. Doug got Chateaubriand and I got the shrimp and we both ordered fried rice. We all shared each meal. Nicholas seemed to really enjoy watching the chef prepare the food and ate some rice, chicken, shrimp, and tomato. He especially liked it when I fed him food from my chopsticks...that was certainly something new! During our meal, the weather turned fom bad to beyond worse. The trees were bent in half from the wind and lost a lot of flowers and leaves. The thunder and lightning was right over us and the power was constantly flickering and threatening to go off. The rain poured down and places all over town were underwater. My mom called us at the end of the meal, wondering where we could be and if we were ok. She was telling us that HER street (which rarely floods) was up over the curb. That for sure meant our street was badly flooded too. As we left, things had begun to calm down and we had a relatively safe drive home. By the time we got back into town, the sky was clearing and luckily, the water in our street had receded and we could get to our house. The debris line was over a foot past the sidewalk this time, so it was a pretty bad flood this afternoon. The temp was down into the 60's. Brrr.....

Since then, we have all been hanging out in the house in our PJ's and watching cartoons. What a nice cozy way to end a wonderful day. Doug got me a half hour massage and I am SO excited as I have never had one and I am looking forward to it! Nicholas and Nathan got me a silver James Avery "Best Mom" charm to add to my mom charm necklace. I sure was spoiled! We are trying to get into bed early tonight to finish off the day.

Take care and God bless!


Melody

Saturday, May 7, 2005 11:10 PM CDT

We are back! San Antonio was fun! The boys' appts went well. The GI was glad to see us and was commenting on how big Nicholas is getting and how intelligent he is. We think so too, but of course we are totally biased! He is pleased with Nicholas' progress for the most part. Nicholas has been sticking to his growth curve the past 2 visits and his weight to height ratio is good right now thanks to the increased overnight feeds. We have not had nearly as much success with weaning him this time as we had hoped. 2 straight weeks of losses have not been promising. He still feels like there is an underlying motility issue that is yet undiagnosed, so we once again talked about the motility testing in Kansas City. It is looking unavoidable at this point. He was also concerned with Nicholas' terrible Ig levels from this past week (see entry from Thurs for the levels update) and questioned if it is traisient and he is supposed to outgrow it, why are the numbers getting worse? My thoughts exactly!! It seems as though that is the million dollar question! We STILL have not heard from the immuno and he is getting a piece of me on Mon if he has not called us back by the afternoon. He increased Nicholas' appetite stimulant by more than double to see if we can get the appetite going again and put him back on a daily HUGE dose of Miralax to address the constipation, which seems to be worsening lately as well (hence the concern again with motility). The rest is the same and there was talk of weaning the Reglan if he he does well with the new changes. There are no tests he feels need to be done at this time outside of motility, so that was good news!

Nathan was given the good once over. It seems the reason he was having trouble the past couple of days is that he has already outgrown his weight dosage of Zantac. Every 1.5 lbs needs to be increased, so now we can keep a closer eye on when it needs adjusting. He also put him on Miralax also as it seems his pooping has gone south lately really fast. He did not poop at all yesterday and we dosed him with the laxative earlier and STILL had to give suppositories 3x today as he was SO backed up he could not eat and screamed until he could pass it. The mucous from his cold also aggrevated his reflux the past few days and that plus the outgrown dose made for some very miserable days this week! He seems very mild in comparison to Nicholas, thank goodness, and since he is at the peak age for reflux (according to the GI), things have been very stressful at best these days. Both need to be seen again in 2 mos.

We got to see an active Army base, Ft. Sam Houston, yesterday also as we thought it was a historical marker and turned out to be an active base instead. They had a really cool park there which had field artilary, tanks, trucks, and a helicopter on display. Nicholas LOVED the tank and helicopter and we got some cute pics of him with each that I will post soon. He also got to run around the field there and had a ball. We drove around and loked at all the old style officers' housing before meeting our good friends for dinner and heading back to their house for a visit. It was a long day, but we had a really good time and both boys did really well.

Both boys seem to FINALLY be recovering from their bugs. Nathan is still snuffly and has to be suctioned out several times a day, which makes him scream even more than he already does. His poor little nose is bleeding a bit from all the suctioning that we have to do. Nicholas is finally not noticably coughing and congested, thanks to increased breathing treatments and decongestant. I am wary of weaning off these as I do not want him to relapse.

I am finally recovering from the plugged duct and feeling better...fever is gone along with most of the pain. I have had a headache from the constant crying, but hoping it will resolve soon with the changes from the appt hopefully helping everyone here.

Nicholas had a great riding lesson today and we picked up the boys' pics from Monday night. They turned out great! I will also need to post some of those as well! We met the boys' godmother for dinner tonight after grabbing a QUICK nap at home.

Guess that is all for the past 2 days. Hope all are well! Take care and God bless!


Melody

Thursday, May 5, 2005 9:34 PM CDT

I should have known by the way the day started that it was not going to be the best day! The DT showed up at our door knocking for a therapy session at 9:15 and I was still in bed in my pj's, glasses still on, and bed hair. Uh-oh! The therapy session with her went better than last time, even if Nicholas had just woken up when the she arrived!

After she left, the peds office called with the results of Nicholas' immuno and allergy panels. Let's just say that some of the results were WAY less than desirable! His allergy panel came back great...no reactions to anything. The Ig levels were the worst they have ever been since we started checking them.

IgA went from 24 (low end normal 26) to 19
IgM went from 19 (low end normal 26) to 13
IgG went from 437 (low end normal 533) to 375

Right now, we are still awaiting the immuno to call and go over the results with us, but I am more than disappointed at how they turned out. Shocked is more like it. If he really has a transient form of immunodeficiency, should't we see some sort of improvement...even a little....or at least have it staying the same? It should not drop like this. Ugh! We will update more after going over the results with the immuno.

I had my 6 wk follow-up at the OB this afternoon and that appt went well. I for sure have a plugged duct and starting a fever, so we are hoping it does not progress into mastitis. We are thinking it is under control for now and hoping it gets better. The episiotomy is healing well and we are keeping an eye on the possibility that I may have an umbilical hernia from the strain the extra amniotic fluid and water retention had on my belly. Other than that, I am free from OB visits for a year!

Tomorrow is our trip to San Antonio for our GI appt for the boys, so I will not be updating tomorrow night. I promise to give all the details on Sat. Now, since it is going to be an early morning and long day, I am going to bed while the baby is still sleeping! Take care and God bless!


Melody

Wednesday, May 4, 2005 11:21 PM CDT

My poor little baby! Nathan has gotten his first cold. I think that may have been part of the reason he was so upset yesterday. If I recall correctly, mucous makes reflux worse and that could be another reason he is having trouble. He had to be rudely introduced to the nasal aspirator and saline spray...and let's just say the meeting did NOT go well! Poor baby screamed and flailed his arm around and was SO mad! I got out some nice yellowish green boogers (sorry!) and then promptly took his temperature while calling the nurse's line at the peds office. Because of his age and the fact that illness has been passed around this family the past week and a half, I did not want to take any chances with illnesses....besides, I am still remembering how Nicholas' RSV started and that makes me VERY wary of bugs in babies this young. Because he did not have a fever and was breathing ok, she advised me it was most likely a cold and to be agressive with keeping his nose clear and watching his temp closely. He had an ok day, but this evening, he has been crying for a couple of hours on and off (mostly on) since he woke. He had one crying spell earlier so intense and seemingly painful, he turned purple from screaming, went rigid all over his body, and scratched/clawed at his face so hard, he drew blood in THREE places. Come on Friday! All this screaming is really wearing me down.

Nicholas is slowly recovering from his cough/congestion...it feels like he has been sick forever. Extra breathing treatments and root-beer flavored decongestant have been helping him keep it at bay somewhat. I tried SO hard to resist calling today for his Ig levels, but by 4:35 I could not stand it and I called. STILL NOTHING! I am dying here! I SURE hope this means they will be in tomorrow! he had a great time when we went to the library for storytime. He had such a cute moment this afternoon...we were watching 64 Zoo Lane on Noggin. The cartoon animals had started a band and were singing a song where they chanted "Pizza Pizza Pizza" over and over throughout the little song. Nicholas perked right up when he heard the P word and said "I eat pizza?". Now how can you say NO to your child actually asking to eat something? Especially something nice and fattening after he has lost weight for the second week in a row...NOT THIS MAMA! So, we had CiCi's for dinner after hearing him chanting pizza all afternoon! It was pretty good actually!

I am hanging in there and trying to ward off mastitis as I have a oretty bad plugged duct that does not seem to want to unplug itself. Ugh! I was SO enjoying the fact that nursing had FINALLY stopped bringing tears to my eyes every time he latched on. Now, it is back to that level of pain on that one side. I am hoping that it feels better tomorrow...in the mean time, TG for Tylenol!

At least we have SOME good news in this family today! Doug sent me this really funny email his boss had sent around to the whole staff at work after the company picnic Sat. His wife had caught Doug going down the bouncy slide after he had let Nicholas slide down...I mean, he had to get down, right? She got a cute pic of Nicholas being let down by Doug and then got another one of just Doug going down the slide, arms in the air and big smile on his face. Well, his boss sent an email joking that maybe the next time they had a picnic, the kids could actually play if Doug would quit hogging the kiddie rides/games and included the pic of him! I was rolling! It was TOO funny! It also makes me feel SO good that Doug and his boss have such a good relationship that they can joke like that. This job change was SO meant to be! I could not be happier and neither could he.

Time for bed. Hope all are well! Take care and God bless!


Melody

Tuesday, May 3, 2005 8:35 PM CDT

I feel so great! I had a productive day today and it feels so good! My parents came over and stayed most of the day. They came bearing kitchen cabinet organizing materials and we got down and dirty reorganizing several of the cabinets. I have to say....THEY LOOK GOOD!!!

We ate lunch and visited and my mom seemed to have a really good time...a much needed break fom the busy season at school. At least she was until poor baby Nathan started screaming.

Nathan had a rough day, though. He screamed a lot of the day and constantly needed to be held...and upright only at that. I had to give him his 2nd dose of Zantac early and then piggyback it ioth Maalox 30 min later as he would not calm down. My mom was beside herself as she could not stand to see him SO upset. Finally, after nursing him upright (serious nursing challenge), he settled enough to go to sleep. He seems to be doing better now....still really fussy and needing to be held constantly, but at least not screaming like before. Come on Friday! I was going to be using the GI's pgr # he gave us if he was screaming again tonight, but he seems to be doing a bit better.

Nicholas is doing ok today. I wish he could get over the congestion and cough. Hopefully it will be gone soon. I told myself I was not going to be one of those nagging moms and call every day to the peds office for the lab results, but I could not help it. I waited until 4:57 and then called. Nothing yet. That means the Ig levels should be in sometime tomorrow. I hope so....I am dying to know!

I am worn out from a screaming baby. I am heading to bed. Take care and God bless!


Melody

Monday, May 2, 2005 10:27 PM CDT

Whew! That was one exhausting trip to the mall! We tried to get pictures done of the baby, of Nicholas and the baby, and of us all together tonight at the photo studio at the mall. Nicholas was so easy to get pics of as a newborn...he just lay there and slept. Nathan, on the other hand, decided to be awake AND hungry, even though I had just fed him right before we got in the car to travel 5 min to the mall. He was totally uncooperative....thank goodness for the binky! We used it to calm him down, then yanked it and allowed the photographer too snap as many pics as she could before he screamed again. Then, binky back into the hole to calm him down again.....and so it went for EVERY picture he took! We had to bribe Nicholas with promises of dinner at Rainforest Cafe afterwards to get him to sit still long enough for us to calm the baby for another picture. After that bribe was no longer working, another employee who was helping broke out the gummi bears and those did the trick for the last few pictures. After picking out what we wanted and spending a fortune, it was off to dinner. I do have to say, however, that dinner at Rainforest was yummy!

Nicholas had blood drawn today I have never been prouder of him during labwork. He actually laid down to let the tech do it. Laying down always causes him to panic for fear of what will be done to him (most procedures and exams, etc are done to him laying down). The tech was really good and did it quickly and the stick was over with so fast, he almost did not even know he was stuck until it was done. She had to take 2 huge vials, but the vein produced long enough for both vials to be filled. He lay there and was super good. The tech was so impressed, she gave him 2 brave patient coupons for a free frosty at Wendy's. The ped saw us in the hall and said Nicholas sounds like he is getting over the bug (cough is steadily improving) and that Nathan looks lke the jaundice is getting much better than it was also. He was also thrilled with Nathan's weight gain...9 lbs 14.5 oz as of Sunday morning!

My mom and dad are coming over tomorrow all day for a visit. My mom is so burnt out from ARD's at school, she is in need of a break, so she is coming over to relax and enjoy her boys. I am looking forward to it, but probably not as much as them!

Take care and God bless! I am heading to bed!


Melody

Sunday, May 1, 2005 8:25 PM CDT - Happy May Day!

We made to church this morning and Nathan made it through the whole service with only one almost crying jag. Thankfully, we were able to stifle it with the binky and bypass any loud interruptions to the service. It was communion Sunday, so I was glad he made it through. Doug and I have not had communion since before I went on bedrest back in January. After the service, it was blood drive Sunday there as well and Doug went, as usual, to donate. He was not able to last time as his temp was too high and he felt so bad for that, but this time, things were just fine and he was able to donate. Unfortunately, he has a nice bruise from a blown vein to show for it.

After Nicholas and Nathan had a nap at home and Doug and I worked on the baby announcements, we went out for me to get a haircut while Doug took the boys on a mystery errand. We met up with a couple of friends for dinner after we were done. Dinner was nice and it was good to get out with friends for a change.

Nicholas has a cough still. Thank goodness it is not nearly as bad as it was. We have been trying to stay on top of it with extra breathing treatments and decongestant medicine. It seems to be working. He has not run fever for a few days, but seems to be dragging from being tired from all the excitement this weekend. Tomorrow is going to be a day where we will lay low. He also needs to go to the peds office to get his blood drawn for an immunopanel (Ig levels) and the allergy panel for the immunologist. We will need to see if the recent illness will affect the test to do it this soon or if we can go ahead and get it done. I am hoping we can get it done tomorrow as I would like to have the levels, if possible, before we go to see the GI on Fri.

Hopefully we will hear from the architectural committee this week about the patio cover we are wanting to have put in with our tax return. The carpenter can start next Monday if we have approval. We have been looking at new patio furniture as we will finally be able to purchase a really nice set now that it will be covered and protected from the weather. So far, all the sets with 6 chairs have been SO expensive...$500+. I happened to be picking up some groceries at Krogers tonight and happened (surprisingly) to see a really nice set with 6 nice slingback chairs, 2 matching footrests, a side table, and a large dining table for $299. What a deal! The only problem is that we do not have room to store it right now and I do not want to have to put it out and expose it to the elements before the cover is over the patio. We are keeping our fingers crossed that it does not sell until we are ready to buy it.

Guess that is about it for us. Hope all are well. take care and God bless!


Melody

Saturday, April 30, 2005 11:37 PM CDT

We had SO much fun today! Even though it was cold and cloudy, Doug's company picnic was a blast! Nicholas had a lot of fun with everything. He went on the carousel, bounced in a bounce house, petted a horse (although this was old hat to him!), watched a clown show and danced with him, watched for turtles in the lake there, ate a lot (BBQ, popcorn, cookies, ice cream), took a dive off a stage and knocked a spot on his head, ran around, and played very hard. He was exhausted by the time we left. After that, we went to this lot by a runway at Intercontinental Airport and watched the planes land. Nicholas was super impressed with the noise and size of the planes as they were coming in...Doug was also!

We hopped in the car and drove somewhere for dinner before dropping by a birthday get together for one of Doug's old college roommates who is a good friend of ours. Boy, was it COLD outside visiting with everyone! We did not last long as Nathan was at the end of his rope and ready to go home. It was a nice visit and short enought to get us home at a decent hour (they live an hr away).

We are heading to bed now as it has been a long day and sure to be soon before we are up again with the baby! Take care and God bless!


Melody

Friday, April 29, 2005 11:09 PM CDT

Boring day here....we hung around and tried to get Nicholas over this awful cough he STILL has. We had a picnic in front of the TV during lunch to watch one of his favorite shows, Litte Bear.

This evening, all of us, my sis and her boys, and my parents all went to our local Relay for Life...an annual cancer walk/fundraiser. We went to watch my mom in her purple survivor's shirt walk her victory lap and to celebrate her being cancer free. They had a great BBQ dinner with all the trimmings and the boys had a blast playing with Doug on the playground. At the end of the evening, we had several tired little boys! All that fresh air and playing made them really sleepy!

Tomorrow is Doug's company picnic, so it will be another fun filled day and some friends invited us tomorrow night for a birthday get together. We have not yet decided if we should go as it is sure to be a long, tiring day tomorrow and they live about an hr away. We will see, I guess!

Take care, God bless, and say a small prayer for all those who have had cancer touch their lives in some way.


Melody

Thursday, April 28, 2005 9:17 PM CDT

It was the day of the coughing chorus! When we went over to my sister's house, both her boys and Nicholas were just hacking up a storm. We kept the baby far away from all of them and left the 3 together to comiserate. Nicholas and his older cousin even shared a cough pop (cough med lollipop) back and forth between the two of them!

While there, we decided to make a stop at the mall and run a couple of errands....hit a good sale at Gymboree, bought some undies, and played for a few at the play area (after pleading by both older boys) before getting some Chick-fil-a to go for the boys' lunches. My sister and I opted for the more sophisticated (and super yummy) fried rice from Benihana's to go. We headed back, filled up on some tasty grub, and then it was time to crash for naps. They got to play for a bit before we had to head home. It was a fun day. They are coming here tomorrow for the Relay for Life, so it should be another fun day. We will get to watch my mom make her survivor's victory lap, eat some yummy barbeque, and play at the park there. It has always been a fun time and something special to see my mom make her victory lap. It alway smoves me to tears. I am SO proud of her for fighting so hard and beating cancer twice, and seeing her walk with everyone else is a testament to her bravery and determination. I am SO looking forward to it!

Doug got to use his new birthday lawnmower tonight to mow and loved it, although he got a little burn from the exhaust part of it. The yard looks great too.

Time for bed for this household really soon, so I will end for today. Take care and God bless!


Melody

Wednesday, April 27, 2005 8:37 PM CDT - Happy Anniversary, Mom and Dad P!!!!

Today was a much better day. After several doses of Zantac, Nathan seems to be feeling much better. He has fed better and has not cried much at all today. I am hoping this is all it will take to keep things under control for him. Nicholas has only run a low grade fever today and has acted like he is feeling a bit better. He woke with a nasty cough though and when I called my sister today, there was my older nephew in the background coughing the very same cough. They both apparently started up that one this morning. We had planned to go over there to visit tomorrow, so they can keep each other company coughing I guess! We gave him some decongestant and Albuterol breathing treatment and he seems to be coughing less and breathing better. He is getting a pediatric allergy panel done with the Ig level testing next week. That should be interesting to see what it turns up.

We had DT today. His other DT had her baby Saturday, and is now officially on maternity leave. We miss her but are getting acquainted with her replacement. His session today was less than desirable as he tantrumed a lot of the time with frustration over a puzzle. I think since he is getting over a bug, his fuse is a lot shorter than usual. His uncle also stopped by for a short visit as he was out our way and thought he would like to see us. It was quite an eventful day as we had also been to the library this morning as well.

Tonight we had a special treat of going out for ice cream after dinner. Nicholas ate more than last time, so he is slowly getting better at enjoying this treat!

Guess that is all. Hope all are well. Take care and God bless!


Melody

Tuesday, April 26, 2005 10:34 PM CDT

I am feeling very lucky to still be sane at the end of today. It was a LONG night last night with the baby. Nicholas was super whiny today and Nathan has cried so much he is getting hoarse. We finally called the GI about Nathan again after he stopped eating like he usually does. He was displaying all the classic symptoms of reflux and it was time to realize he was hurting. The GI started him on Zantac and he seems to be eating better now. He has had 2 doses and HATES it, but if it helps then it will be worth it for him. We will look at how he is doing when we go to see the GI next Fri for Nicholas.

Nicholas' fever was down to 99.1 before bed, so I am hopeful that tomorrow he will be feeling back to his perky 2 yr old self. We may even make it to the library for storytime if that is the case. Nathan, thankfully, seems to have dodged the illness and has not run a fever thus far. My sister's boys are feeling better too, so it seems as if this was a short-lived bug.

Guess that is all. I am really tired and have had a headache for 3 days now, so I am seriously hoping we can get to bed early tonight. Take care and God bless!


Melody

Monday, April 25, 2005 8:07 PM CDT - Happy Birthday Corey and Karmen!

Well, it was a good thing that today was a dreary, gray, rainy Monday. Nicholas caught the bug that his cousins have been sick with this past weekend. He was running fever all day today. My sister took them to the ped this morning and was told they have a virus. I guess that means I am saving a copay unless Nicholas turns up with some other symptoms. He does have a touch of diarrhea, but definitely not the worst he has had. His eating is off, but then, that is always the first thing to go when he is not feeling well. We spent the day in jammies and he was super whiny, although he keeps assuring me he feels "ok".

Nathan seems to be displaying some rather unsettling symptoms of reflux...the back arching, screaming in pain, spitting up (even once today spitting up forcefully enough to have it come out his nose). I am sure not happy about this, but with my history of reflux and Nicholas' as well, there was a very good chance this might come up. He has been taking a bit of Maalox per the GI's instruction and feeling relief, so that makes me suspect even more that this is what is causing his discomfort. Nicholas goes to the GI a week from Fri, so we will for sure be having Nathan checked out at the same time. If his discomfort continues, we may be calling the GI and seeing what more can be done for him in the mean time. Luckily, he has escaped the fever thus far. I am glad, as the ped told us any fever 100.5 in a baby his age is cause to go downtown to Tx Children's and most likely result in an admit. I sure hope it does not come to that.

It is bath time right now with meds and bedtime following close after. It has been one LONG day between a cranky sick toddler and a fussy crying baby. I am looking forward to some well-earned sleep very soon! Take care and God bless!


Melody

Sunday, April 24, 2005 11:46 PM CDT

More errands today...The running around never seems to stop. We did get a lot of stuff done today though, so I guess we had a productive day.

After we got home from running errands, Melody and Nathan went over to a friend's house who just had surgery to remove skin cancer. Several other friends went over there too. They celebrated a birthday, ate pizza, watched tv, did a lot of chatting...It was basically a girls night. She had a great time, but is super tired. When Melody and Nathan left our house, Nicholas went down for his nap. Once he woke up, he and I went to Chuck E. Cheese for dinner and playing. When we got there, he was so excited that if he wasn't buckled in, he would have flown out of his seat! He ate well and had a great time playing games. It was great for him to get out and do something without the baby around. He needs to do that every once in a while. He was glad to see Nathan (and Mommy) when we got home.

That's all for now. Take care and God bless.

Doug

Saturday, April 23, 2005 10:32 PM CDT - Happy 1 month birthday, Nathan!

Nathan is one month old today! My, how time flies! Seems like just yesterday I was still pg and miserable! Now, I hold the best possible outcome of a difficult pg and birth in my arms and never for a moment think of the terrible time I had getting to this point. He was worth every bit of it, that is for sure!

Today, we went to Nicholas' riding lesson after sleeping in a bit and waking up feeling like we had a decent night's sleep for a change. After that, we went on over to Gymboree and hit a good sale there...just HAD to get the matching onesie to an adorable blanket my aunt sent Nathan for a baby gift. After that, it was off to Target for some diaper exchanges as Nathan is out of newborn size already and into sz 1. After that, it was on through the Mickey D's drive through per request by Nicholas and then home to eat and nap. The rest of the day has been spent around the house....laundry, computer, TV, etc. Just resting and taking it easy.

Hope all are well. Take care and God bless!


Melody

Friday, April 22, 2005 8:51 PM CDT

Wow.....what a relaxing day! We vegged all day! Played, ate, napped....that is the life! Nicholas' DT came by for a brief visit and we were able to give her a small baby gift as a token of our appreciation of all she has done for Nicholas. She loved it and I was so glad! We sure are going to miss her!

Tonight Doug broke out the grill and fry daddy and we had homemade burgers and fries. YUM!! Nicholas had a ball playing outside while he cooked. Now, we are all winding down for bed.

Guess that is all the news I can scrape up for you after such a boring day, but we sorely needed a day like that!! Hope all are well. Take care and God bless.


Melody

Thursday, April 21, 2005 11:42 PM CDT - Aggie Muster...Softly call the muster......

We had Nicholas'annual eval for EI this morning. They retested him using a new test today....the DAYC test. He still qualifies for services (which we knew) but the delays he has are now down to 2-5 mos across the board instead of HUGE gaps like he has had in the past! I am SO totally thrilled that he is making progress like this!!! We changed services: OT to 1xmo down from 2xmo and DT to 2xmo up from 1xmo and see how he does. He also got a new DT as ours is going on maternity leave next wk after her c-section. She may not return...has not decided yet. I am SO proud of him, I am just bursting at the seams!

The rest of the day was pretty laid back. Hung out here and just vegged all day. It was nice. We all slept too.

Guess thatis all from our little corner of the world. Take care and God bless! Sherry, still thinking of you...hang in there, girlie!


Melody

Wednesday, April 20, 2005 10:15 PM CDT

Nathan's levels were down to 10.6 from 14.5 on Mon, so we know for sure he has bf jaundice. The ped now is not worried about the levels anymore and just wants us to keep an eye on them to be sure they do not get too bad. We are back to nursing and he did not skip a beat getting back to it. Today is the first time since Mon that he actually slept without having to be held, so I think he is feeling much better. Now, if we could just get him pooping again...he went this morning, after 24 hrs and they were HARD little pellets, so I am hoping that nursing will help resolve the residual constipation.

We also found out today that after our appeal, the formula coverage issue went to deliberation this afternoon and the new ins finally decided to approve Nicholas' Peptamen Jr. Just in the nick of time too, as we are halfway through the last case and should be out in only a couple more days. I am SO happy as that would have cost us $750 /mo and there was NO way we could have afforded that, esp as we do not qualify for medicaid.

Just wanted to share our good news with everyone and thank you all for your support! I am hoping things are looking up from here!

My sister and I had a great day taking the boys to Nana's school for lunch. They had a blast and Nana sure was more than happy to show them all off to everyone! We had a great lunch as well and went for a quick shopping trip to Babies R Us after we left from there. Picked up a couple of things for Nathan...more warm weather clothing and a cute pr of shoes. We did not make it to the library, but it ended up being ok.

Just a quick request...a friend of mine, Sherry, and her family, are having a really rough time right now. They could ALL use all the good thoughts and prayers they can get. Please remember them in your prayers if you can to get them through this terrible situation. Thanks!

Hope all are well and healthy. Take care and God bless!


Melody

Tuesday, April 19, 2005 9:32 PM CDT

Now, Nathan is vomiting formula with almost each feed...projectile, entire stomach contents....and fussy because of the vomiting and stomach upset. He NEVER did this with BM. His urine is dark and he is not pooping now...and hasn't for the past about 17+ hrs. I have already called the ped and he really wants me to stick it out and feels that he is getting enough to be ok until the morning. Everything in me as a mother is screaming NO IT IS NOT OK! but I have to trust that the dr is right about this and HOPE that the baby will be able to go back to nursing tomorrow without all the problems trying to get him to forget the bottle for a THIRD time. I can barely hold him, even after a feed, as he still roots and looks at me like why aren't you feeding me and it breaks my heart. I KNOW what he wants and cannot give it to him without ruining what we have already given up so far and I do NOT want to have to do this again. He had to sleep with us last night as he was so miserable and would only be able to settle and rest while in my arms. I am SO frustrated as I was SO looking forward to nursing with this baby after having to only pump for Nicholas for 7 mos due to his reflux and dysphagia, he could never nurse. Now, I am beginning to feel like nursing this baby has been doomed from the start. I am not going to give up yet, as I feel like we can get back on track, but fear another setback that has taken us 2 wks to get past the last one. UGH! Sorry for the vent, but I am just so upset over this and feeling heartbroken over not being able to give my baby what he so desperately wants. I just pray that tomorrow, things can get back to normal. I am just counting the hours until tomorrow morning when Nathan and I can get in there and get this iver with and get on with the rest of our normal routine...hopefully for good this time!

Tomorrow, my sister is coming early to watch Nicholas while I run to the peds and then we are hoping to make it to the library for storytime before heading over to my mom's school to meet her for lunch. She is going to be one proud, glowing Nana as she shows off her grandsons to everyone, especially the newest arrival!

Guess that is about all for us today...it is about all I can handle anyways. I am hoping for things to get back to normal tomorrow. Take care and God bless!


Melody

Monday, April 18, 2005 11:31 PM CDT - Happy Birthday, Maria!

We have been having ins issues with our new ins....they have decided to cover Nicholas' pump, buttons, and bags, but NOTthe formula itself... . Apparently,, they did not like the wording on the letter of med necessity. So, our GI office has rewritten the letter after figuring out what was wrong with the wording in the other one. She then sent us a copy of the new one so we could read it. This is something we have never had to read or see before now and it was kind of a slap in the face to read it. I *know* Nicholas has issues, but seeing them on paper in writing really hit me hard. Seeing all the things that are *wrong* with him written down in a long list of long scary medical terminology really made me sad for him. You look at him and would not necessarily know he had all these things giving him trouble. UGH! I *so* did not need to read that after the day I have had.

Nathan had to go back to the ped today because his jaundice was worsening again. I now cannot nurse him until Wed morning as he dr is trying to determine if he is having the jaundice from nursing or another more serious medical problem. I feel bad as he looks at me and roots like he wants to and for now all I can do it pump. I am trying to let anyone else give him the bottles as I do NOT want him to associate me in any way with the bottle. I am just hoping he is old enough and has nursed exclusively for long enough that it is an easy transition back to nursing. I am SO tired of trying to retrain him and having it be a huge struggle for the both of us. Double UGH!

Tomorrow, I am trying to go visit my sister at her house. We will see how that goes. Hope all are well. Take care and God bless!


Melody

Sunday, April 17, 2005 10:47 PM CDT

We made to church this morning for the first time since about New Year's. Nicholas had a great time in the nursery where he played outsite and also colored. Nathan did well too, but he did not want to stay in church. He decided that he was hungry, so I took him out first and got him settled until about half way through the service when Melody came to get him to feed him. After church we had lunch with Melody's parents and ran a couple of errands before we came home so Nicholas could take a nap. The rest of the day was pretty uneventful.

We hope everyone has a good week. I guess that is all for now. Take care and God bless.

Doug

Saturday, April 16, 2005 10:09 PM CDT

Wow! What a fun day!

After waking up, we got ready and went to Nicholas' riding lesson. After that, we ran a few errands. I bit it and bought some shorts and a pair of capris in a size I have NEVER worn before as I have not enough things that fit and I figured a couple of transitional items could not hurt. I have the majority of my shirts still fitting, so a couple of bottoms were all that were needed. We also found some cute things for the boys as well as a couple of summer weight blankets for Nathan as most of the ones we have are winter weight for a Nov baby. It was a productive trip!

After that, we came home and napped and then went back off to the pasture for a birthday party. The owner had a big birthday bash, including dinner and great company. Her husband grilled chicken and beef fajita meat with all the trimmings and they fried up a huge batch of Yucca. For those who have never had it, it is a cactusy kind of plant here in Texas that tastes like french fries after you fry it up and sprinkle it with season salt. YUM!

We are now tired from all that gresh air and ready for bed. Take care and God bless!


Melody

Friday, April 15, 2005 11:01 PM CDT

Tax day!!! Hope you got yours done and mailed!

Nicholas went to the immuno today. The appt went well and the immuno was pleased with his progress thus far, even though we really have no idea for certain what it was that changed things for him. Right now, everything hinges on how his levels and labs come out next month as to deciding what to do and where to go from here. He is also getting a new kind of blood allergy test to see if the sniffles he has been having are allergy related. The immuno felt it better to leave him on the preventative abx for sure until sick season is officially over and wait until the labs are back to see if he still needs it or not.

After having that appt taking up almost half the day, the rest of the day was pretty laid back. We slept this afternoon and hung around, grabbed some dinner, and ran an errand at toys r us.

Guess that is about all. We are hoping for some sleep this weekend! Take care and God bless!


Melody

Thursday, April 14, 2005 11:44 PM CDT

Nathan had to go see a Urologist today. He had a circumcision that the ped was not happy about the looks of it. It seems that when it was done, not enough skin was taken off and all it did was enlarge the hole at the end....big enough to let messes in, but too small and tight to make it impossible to pull the skin back and clean underneath it. The urologist was in agreement that it was bad enough to need to be redone. The bad part is we have to wait until he is 6 mos old as NOW it is a surgery requiring general anesthesia to sedate and it takes 30 min + to revise it. He is too young to risk using general now. Apparently, you only get one chance to do it with local when they are born. UGH! Here is the scary part tho......I asked him if he gets many botched circumcisions and he said he sees them all the time and he fixes a min of 2 a week surgically! That is over 100 babies a year! And, he is not the only one in this practice. I was shocked! Apparently, according to him, there is no dotted line that says cut here and since everyone's anatomy is a bit different, it makes it hard to have a set way to do it. He says that everyone who does them has messed up at least a once or twice. Really reassuring, huh? Anyways, it looks like our baby is having surgery looming in his future.

We did something special for dinner because we wanted to take advantage of the nice weather. We loaded the boys up in the stroller and walked over 1/2 a mile to Sonic. We ordered our food and ate there in the nice cool outdoors. Nicholas had a great time. Nathan on the other hand became hungry while we were out. Melody was able to calm him down and he was mesmorized by the darkness and the street lights on the way home.

Tomorrow is Nicholas' immuno appointment. Look for the update tomorrow.

Take care and God bless!

Doug

Wednesday, April 13, 2005 9:00 PM CDT - Happy Birthday, Michelle!

Today was my first solo trial as a mom of 2. We all survived! We even got out and went to the library for storytime! I am pretty proud of myself! Nicholas had a good day and seemed to be satisfied with the amount of attention he received and the baby ate well and slept a lot. I even got a quick nap in this afternoon while both boys slept. It was nice, actually. Even though I LOVED all the help I got from family, I felt like such a bad hostess for thinking of napping while they were here, so I never did, even though at times I was basically nodding off while talking to them and feeling totally exhausted. I like the thought of being able to nap without feeling bad for leaving a guest sitting here alone while I sleep. It is amazing what a little bit of rest can do for a body!

Tomorrow is Nathan's trip to the Urologist to get his bad circumcision looked at. I am hoping there is someting that can be done to fix it. It bothers me as the hole is now too large to keep messes out, but too small to pull the skin back and clean underneath. The skin is waaaay too tight to be able to be comfortably pulled back over the end, so it seems like to me an infection waiting to happen. I am pretty sure they will not be able to fix it tomorrow, but hopefully something can be done relatively soon while he is still too young to remember much about it.

Guess that is about all for us today. Hope all are well and healthy. Take a min to check out the new pics of the boys in the photo album. I am finally updating from the computer with all the pics on it! Take care and God bless!


Melody

Tuesday, April 12, 2005 10:52 PM CDT

FREEDOM!!! WOOHOO!!! I have not driven a car at all since before I went on bedrest Jan 20. It has been almost 3 mos. Since I was cleared to drive yesterday at my dr appt, I decided I HAD to get out today, so my sister came over and we went to the mall for some retail therapy. I tried on some clothes and was discouraged that my belly still has a LONG way to go before I can wear reg clothes again, but I did find some really nice little things for the boys! I so LOVE shopping for them! They had a nursing room in a family bathroom there at the mall and so I was able to feed the baby without making it a sideshow for everyone there. I thought that was nice.

My sister had some things to do this afternoon, so she left from the mall and I came home and put one tired boy to bed, carried in another sleeping boy and laid down myself to try and catch some shut eye. I actually got a whole hour of uninterrupted nap! It was fabulous!

Guess that is about all for now. I am thinking of trying to make it to the storytime at the library tomorrow. We will see how the morning goes for us. Take care and God bless!


Melody

Monday, April 11, 2005 10:29 PM CDT

Well, today was a crazy day....

My dad came over to help me and we had a downpour this morning and our street flooded due to bad drainage and turned his Camaro (that was parked in the street) into a swamp inside the car. I felt so terrible! He had to bail the water out into the street and call for a tow to take it in. So far,t he damages total $1000-1500, but could go higher. I just pray it is not totalled.

He took me to my OB appt today and I am now cleared to drive and everything looks good and is healing well since the infection. I am sure hoping I remember how to drive as I have not done it since before I went on bedrest on Jan 20...seems like forever! I go back for my normal postpartum visit in 3 wks.

Nicholas had a good day today and his rash is FINALLY looking like it is healing and improving. Looks like the rx cortisone cream is doing the trick. He also had a really good session with his therapist this morning and we scheduled his annual reeval for next week. He is sure going to miss her when she goes on maternity leave. She is due a few days after my original due date and is ready to deliver anytime!

Nathan is eating like a champ and had gained another couple oz this morning on our scale. I am so glad we stuck the nursing out. He seems to be doing well at last!

I am trying a day on my own tomorrow. It is time for us to get back to a normal life now. Wish me luck! Guess that is all. Take care and God bless!


Melody

Sunday, April 10, 2005 11:53 PM CDT

Today was a really quiet day...we slept, ate, had a couple of visitors and played. I decided to trim some trees while Nicholas wanted to stand under the trees instead of playing basketball. He tried to help, but really wanted to play around the trees. A little while later, the boys Godmother and another good friend stopped by for a short visit. Nicholas slept while they were here and Nathan was actually awake for about half of their visit. That's about it; it was a pretty low key day.

Melody is going for her OB follow-up tomorrow. She will find out how everything is going following the delivery and the infection.

Guess that is all for now. Take care and God bless.

Doug

Saturday, April 9, 2005 10:56 PM CDT

Today was the 1st horse show of the season, so we woke bright and early and traveled to Brenham. Nicholas competed in three classes (events). He did really well, especially considering he had a lot more competition this year. He earned a second place, 3 fourth place, and 2 fifth place ribbons. He had a good time and did a really good job while competing.

Nathan did really well also on his first out-of-town trip. He slept in the car and nursed like a champ the whole time we were gone. He had a breakthrough yesterday and is now nursing a whole lot better and faster at each session. Melody is really appreciating that! We hope he keeps it up, so we can start getting some sleep again.

After the horse show, we grabbed some lunch and then went to the Blue Bell Creamery for dessert. Who can resist $1 per scoop ice cream? Nicholas ate a decent portion of his ice cream scoop, but it was tricky as it was melting as fast as he was eating it. Seems everyone else had the same idea we did. The line to buy ice cream was out the door and we had to eat it outside as there were no seats left indoors. It was nice out, but also very warm and windy.

I guess that is all for now. Take care and God bless!

Doug

Friday, April 8, 2005 10:21 PM CDT

Luckily, there were no more fevers today! The rash, however, is not being very forgiving. The ped is at a total loss as to what it is. It is not fungal (or else we would HOPE it would have responded better to treatment with the Lotrimin), it is not Cellulitis, and it did not respond favorably to the Benadryl treatment either...so is it allergic? Who knows? The ped thinks he may have gotten into somethng like Poisin Ivy...but he has not been away from us and into something like that at all lately, so I doubt it is that. Right now, he is calling it Dermatitis for lack of a better dx. He gave us some rx strength cortisone cream to try and see if that helps and advised us to use calamine lotion if the itching keeps giving him fits. I sure hope this is what he needs as the rash is making him SO miserable! The fever, he thinks, is unrelated and more than likely due to his stuffy nose and cough. He also gave us a rx to hold on to for an abx just in case he takes a turn over the weekend. It is for us to fill if needed. Hope he does not need that though.

My sister came over today and the boys had a good time playing with each other. We picked up Chick-fil-a and the polynesian sauce was an interesting touch.....Nicholas used his as body paint and his cousin's ended up upside down on the carpet. Crazy boys!

Nicholas got a haircut tonight and Doug is next in line. Tomorrow is the first horse show of the season and Nicholas is SO excited! He is ready to go for some fun and has even decided he wants to go for ice cream at the Bluebell Creamery after lunch as well. Sounds like a LOT of fun to me! I hope the baby does well with it all tomorrow. I guess we will see how that all goes. Sounds like Doug's parents may be coming also. Nicholas will love getting to show off for them! We will have a full report tomorrow!

Take care and God bless!


Melody

Thursday, April 7, 2005 10:37 PM CDT

Well, what an interesting day! My sister came and we had the boys playing bright and early. She and a couple of friends got together today and threw me a small diaper shower. It was nice as we got a lot of nice baby toiletries and washcloths and things. I KNOW we will be able to use all these things! We ordered lunch out from a great burger joint and had some cake, too. It was nice and it was also short enough to not be overkill and also allowed the boys time to nap well. My sister was very helpful and did laundry and folded the clothes for me. It was also nice for Nicholas to have a playmate too. He had a good time!

Nursing has been going ok. I have been anal and weighing the baby after every feed to check and make sure he is not losing. So far, he seems to be holding his own. The past 2 nursing sessions have gone well and he has been drinking more and better than usual. I am hoping that is him learning how to nurse and becoming better and more efficient at it. I have high hopes anyway!

Nicholas' rash is getting worse by the day. Yesterday it popped up on the other hip and today it came out on one of his elbows. It does not seem as if the lotrimin is helping it much. He also came out with a fever today too. He is going to have to go back to the ped tomorrow to get checked out again. I sure hope we can get to the bottom of this soon. It itches him terribly and he is constantly being reminded to stop scratching it. Poor baby. I am hoping that is all for the fever as well. Tonight, it was down, and I am hoping it stays that way for tomorrow.

Guess that is about it for today. Hope all are well! Take care and God bless!


Melody

Wednesday, April 6, 2005 11:26 PM CDT

Woohoo! We had a really great visit at the ped's office today. Nathan gained 8 oz.!!!!!!! His jaundice is looking better enough that the ped does not think he needs to be retested for it. We also got the go ahead to start nursing again. Nicholas on the other hand has a yucky rash that is spreading and the ped thinks it is a fungal infection. He is taking Lotrimin for it. He is also taking a decongestant for a cough. Nicholas also had a weigh in today and gained an ounce. It was a good day for weight all around.

My dad came over today to stay with us and help. He also drove us to the appointment this morning. He helped cook dinner and he and my mom stayed to help us eat it. We had a really nice visit and my parents enjoyed spending time with the boys. Tomorrow, my sister and her boys are coming to stay with us. Nicholas is looking forward to playing with his cousin.

Guess that is all the excitement for today. Take care and God bless.

Melody

Tuesday, April 5, 2005 9:59 PM CDT

It was another nice quiet day around here. Doug's mom came to help out and keep me company and it was nice. We were able to take Nicholas to the library for story time and he LOVED it. I am so hoping to be able to get back into the swing of things really soon so we can start going back to these things that Nicholas loves. Nathan will get to start baby story time when he is a few weeks older. I felt a bit bad about taking Nathan out to a room full of kids, but in the same corner where we sat, there were other babies - a 3 wk old, 3.5 wk old, 7 wk old, and 8 wk old...so I did not feel TOO bad for having cabin fever! He stayed in the carrier and had a blanket over him the whole time. It was so worth it to see the HUGE grin on Nicholas' face!

Doug's mom made us a wonderful dinner and the house still smells good from it....we were even lucky enough to have enough for a second meal off it! She also helped with some laundry and fed the baby. I am trying not to bottle feed the baby if I can help it as I really do NOT want him to associate me with the bottle. Besides, if I am to be nursing exclusively soon, it is nice for family members to be able to feed him a bottle or two! They seem to enjoy it a lot....at least I have not heard any complaints!

Tomorrow, my dad comes and we are off to the ped for a checkup....Nathan for a weigh in and Nicholas to get this rash, which is now speading, checked out. Nicholas also has OT. Hope it all goes smoothly!

Guess that is all for today. Take care and God bless!


Melody

Monday, April 4, 2005 10:18 PM CDT - Happy Birthday JennS!

Today was a quiet day around here. Doug is officially back to work and my dad came over to stay with us and help out. I am still not back to normal, but I am trying to get there as fast as I can. Nicholas was ok with Doug being back as he is used to Doug being at work. It is mainly just me he is having the issues with. He is even getting worked up if I am in another room of the house and he cannot see or find me. He is SO relieved when he does find me. I am so hoping he is over this really soon as it hurts to see what all this chaos has done to him.

Doug and I tackled a long list of phone calls today. He called the insurance and FINALLY got the info needed for our new acct, called the GI, made an appt for the yard to be done, called the patio cover guy, and I called and set up my follow up appt with the OB, Nathan's follow up with the ped, and also Nathan's urologist referral to TX Children's. I also talked to the ped abut this funky rash that Nicholas has that is supposed to be a reaction to some new tape Doug used on him. Somehow it is geting worse instead of better and spreading. He is to take Benadryl for 24 hrs and see how it does and he will be seen with Nathan on Wed if it is not better. He is also working on a cough, but no word yet if it is a bug or allergy cough just yet. Whew!

Tomorrow Doug's mom is coming over to help. I am hoping we can work it out that somehow Nicholas can get to the storytime at the library tomorrow. I know he would just LOVE it! I do not know when she is coming, so I am hoping it is early enough to work it out somehow.

Guess that is about it for us here. I hope all are well. I promise I will get some pics of Nathan up in here really soon! Take care and God bless!


Melody

Sunday, April 3, 2005 10:36 PM CDT

Today was a quiet day around here. I apparently am more tired than I ever would have thought. I slept until the 11:00 feed this morning and still felt as if I could sleep more, but decided to get up for the day. We ran to WalMart for a "few things".....I should know by now that you can NEVER get out of that store with only a few things! We ended up on a full-fledged grocery trip and bought a few other things from other areas of the store as well. After 1.5 hrs there, I nearly did myself in. Ugh! Guess I am not ready for "normal" things just yet. I was so beat when we got home, I pumped and then basically fell asleep again. Slept for about an hour until Doug came to tell me that a friend was here to pick up something. I have no idea where that all came from, but I still feel like I could nap anytime, anywhere. I guess the last 2 mos of insomnia and then the birth and illness have taken a lot more out of me than I thought. I hope I can catch up soon so I do not feel tired all the time anymore.

Nathan decided to shake things up today and not poop for 2 straight diapers. He sure had us worried for a little while, but finally gave up a HUGE diaper by the next feed as he obviously had NO room left in there!

Nicholas is finally starting to feel more at home with things. I think he does not feel as much like he is waiting for the other shoe to drop, so to speak. He is not feeling as worried about me leaving. I am so happy as I so totally felt for him during these past few mos.

Guess that is all for us for now. Take care and God bless!


Melody

Saturday, April 2, 2005 10:20 PM CST - Happy Anniversary Robin and James!

WOOHOO! Nathan's bilirubin levels were way down, so it looks like we have dodged a hospital admit for now. We now need to figure out when we are out of the jaundice danger zone and will continue to use a bottle until that time, so his "lazy nursing" will not put his health in jeopardy again. After that, it is bye-bye bottle and back to full time nursing.

Nicholas had a GREAT time at the birthday party for one of his little friends today. It was at a nice litle park and the kids all had a wonderful time eating hot dogs, chips, and these adorable little cupcakes and playing on all the play equipment. Nicholas was so busy having fun on the playground that he barely ate a thing. His abandonment issues from me being in the hospital all these times sure showed its ugly head today as well. Nicholas was watching the gifts being opened and apparently saw me step outside the pavillion where we were to throw a cup away at the trash nearby. He freaked out and started yelling MAMA, MAMA and crying. I hurried over and spent the better part of the next 10-15 min cuddling him on my lap and reassuring him that I was right here and not going anywhere. After the party, we literally had to carry him kicking and fussing, to the car to leave. I would say overall it was a wonderful outing.

Guess that is about all for us. We are saddened by the Pope's passing today and hoping he is no longer suffering and in a much better place now. Right now I am sure God is saying "Well done, my good and faithful servant"....may he rest in peace. Take care and God bless!


Melody

Friday, April 1, 2005 11:35 PM CST - April Fools!!!

Sorry about the missing update last night....I DID get to come home, but it was not until after an 8:00 dose of meds and getting the room cleared out with a toddler underfoot. It was late, both boys needed baths, and we just needed to get to bed for the marathon nursing during the night.

Nathan had his second ped appt today. He got his first ever vaccination and HATED it, got his second newborn screen and REALLY HATED it, had his not-so-great circumcision looked at and the decision was made to refer to a urologist for a second opinion, got his billirubin levels checked as he is looking jaundiced again, and had his hips looked at again and referred out for a hip ultrasound to rule out hip dysplasia and/or dislocation. We got the u/s done this morning after we left the ped and they called us later with the results.....the hips looked great and his billirubin was high, so we need to go get levels redrawn again and see how it is doing tomorrow before a decision is made to readmit him for more phototherapy treatments. UGH, UGH, UGH! It never ends!!! We have taken to me pumping and Doug bottle feeding for tonight to see if that will help stop the levels from rising as we can fill him up as full as we can tonight and see how much we can get rid of before tomorrow. Wish us luck and pray for lower levels tomorrow if you find yourself with a minute.

Tomorrow is also a little birthday party for a friend of Nicholas', and we were SO looking forward to going and letting Nicholas have a good time with his little friends that he never gets to see anymore, but with the jaundice levels on the rise, I am not sure we will be making it. I sure hope we can for Nicholas' sake.

Anyways, I am feeling a bit better and sent home on abx, so I am under strict direction to take it easy for the next week until I am checked again at the OB and off abx. I sure hope Nathan can get over this jaundice as I am not sure how I can take it easy with a new baby in the hospital. I have heard you can get the phototherapy lights to use at home, so we will DEFINATELY be asking about this option....I am sure it must be cheaper for the insurance anyway. Fingers crossed and prayers said that he will not need any of it.

Guess that is about it for us here. Take care and God bless. We will update more on Nathan when we hear something tomorrow.


Melody

Wednesday, March 30, 2005 11:08 PM CST

And the saga continues...
Well, we thought that the run of misfortune was over now that we are all home and the pregnancy is over, but isn't it surprising how wrong you can be sometimes. Melody is once again in the hospital, this time for a uterine infection. She started yesterday afternoon with some cramping and by 6:15 she had fever over 101 and uncontrollable chills. When we got to the ER at 7:15, her fever was 103. After a long wait and some testing, they decided to admit her for IV antibiotics. This morning, she had an abdominal/pelvic ultrasound and we are still waiting for the results. We are hoping she can come home tomorrow. The lucky thing was that the hospital administration made special allowances for Nathan to stay during the day to nurse and Nicholas to visit this evening. Thankfully, Nathan is still willing to nurse, so having to give him bottles at night has not created a huge problem yet

We will update more as we here more information.

Take care and God bless.

Doug

Monday, March 28, 2005 11:11 PM CST

Sorry I have not updated for so long! We have been burning up the freeway between here and the hospital for days now to spend feeding times with Nathan. Since he has been under the billi lights for treating his jaundice, we have not been able to do much more than feed him. Yesterday we went to my parents' house for Easter after we went to see Nathan and were sitting down eating brunch when Doug got a call on his cell...it was the NICU asking if we would like to come get Nathan. We were like heck YES! They jokingly told us we had until midnight....yeah right!!! So, we got right up from the table, food unfinished and headed up there. They were giving us a hard time asking what took us so long when we got there! We got him all checked out and back to the house before the egg hunt had started. Everyone was thrilled to see him and we finally felt "complete", like a family.

He is having a bit of a time right now as he has had bottles taken away since being discharged. I knew we had to have as much food in as possible to get rid of the jaundice and out of the NICU, so I let them, but I am determined to make this nursing work and decided to quit cold turkey and allow him to build stamina nursing. He held out for a few sessions waiting for the bottle, until the middle of last night, I think he realized it was not coming. He has been doing well since then and nursing better and better every time. We have our first appt with the ped tomorrow. Hopefully he has at least maintained his weight from his discharge.

Nicholas has done really well with the baby so far. I was concerned at first in the hosp when he could care less and seemed to ignore him, but every day, he has been better and better. He likes to sing to him when he cries and gets this HUGE grin when the baby stops crying to listen to him. He pats his belly and says "ok baby". He asks to hold him all the time and loves it when we let him. And EVERYTHING is Nathan this and Nathan that..... this morning he woke and asked first ting about Nathan. I guess after all the times we had to leave him, he was checking to make sure he was still here. What a sweetie! I am *SO* proud of him. Makes me realize what a big boy he is becoming. My baby is growing up.

Anyways, sorry for being MIA. I have been trying to find time to update, but we have been going crazy with all the hisp trips and trying to find sitters for Nicholas, and then the holidays in the middle...OMGoodness how crazy! I will try to be better about posting once I am not spending 1/3+ of my day and night nursing!

Take care and God bless!

Melody

Saturday, March 26, 2005 10:45 PM CST

Well, still we sit and wait.....but not for Nathan to be born this time. We just want him to be well enough to come home. He is still at the hospital right now as his billirubin levels got too high and he required phototherapy light treatment to help him get rid of the excess billirubin. This is what causes Jaundice in newborns. Unfortunately, this is not anything we can do here at home, so we are still making the trip up there several times a day to see him. He is becoming a real champ at nursing and he is getting to be a little piglet during feeds! He seems to have quite an appetite and has put on 2.5 oz since yesterday, so we know he is finally eating enough. This is really good news, as the more he eats, the more he poops. The more he poops, the more billirubin he gets rid of....so we are making some really good progress. They are checking his levels overnight and hopefully they will be low enough to enable him to go home tomorrow. Please pray for him as we really would love to have him here for our family Easter celebration tomorrow.

Nicholas is easing into big brotherhood well, it seems. He went for his first sibling visit today and, aside from some jealousy while I was nursing, he did really well. He sang "you are my sunshine" to Nathan when he was crying and Nathan quieted right down and listened. He was also telling him "get well baby", "feel better", and "love you baby". He was so sweet to him and even kissed him goodbye before we left. I am SO proud of him! He is doing remarkably well. I think having Nathan in the NICU has helped as we can gradually introduce him into our lives instead of turning it all upside down at once by bringing him straight home. Of course, this would NOT have been the way we would have chosen it, but we will take whatever good comes from it.

Hope everyone has a HAPPY EASTER tomorrow! Take care and God bless!


Melody

Friday, March 25, 2005 11:43 PM CST

It sure was a roller coaster.....that is for sure. I am home now and trying not to think of my poor little guy still up at the hospital. I just keep telling myself it is just one night (hopefully) and that I can do this. I have NEVER been away from Nicholas overnight until the hosp stays and never left him alone, so this is a biggie for me.

Anyways, back to the story. We arrived bright and early to get induced. Got all checked in, hooked up and had the OB in to break my water. Because of the Polyhydramnios, there was enough fluid in there to flood the bed literally 4 x over. It was crazy. I felt bad as I kept soaking people's scrubs every time they checked me! The induction went pretty well. I was a 4 on arrival, so I was able to get my epidural witin 2 hrs of the induction and was very comfortable pain wise. Nathan, however, dod NOT like the epidural or the pit and responded with dropping heart rates, so I became the lucky recipent of a new friend...the O2 mask. The pit had to be run in cycles as without a certainlevel, I did not progress and at that level< Nathan did not react well, so it was up and down all morning. They started the pit at 7:30 and by noon, I was 7 cm and by 1 pm I was 9. They cleared the room at 1:40 so I could start pushing and I pushed through 4 out of a series of 5 ctx and out he came at 1:54. Talk about an easy birth! I ended up with a 2nd deg episiotomy (which feels suspiciously like the 3rd deg I had before) and Nathan gave the nurses trouble from the start by filling his lungs with thick yucky mucous that had to be suctioned out for a while. After about 20 min and a visit from neonatology, they decided he was ok enough to go to the term nursery. Amid all the chaos afterward, there was a small problem found with the placenta and the umbilical cord was around his neck AND had a big kink in it. My OB decided it was a good thing we delivered when we did. She also told me she was so surprised I pushed him out. She thought it was a c section for sure. I was SO determined it was NOT!

Nathan went downstairs and I waited to be moved while my family took our stuff down to my new room. All of a suden I had this weird feeling and had to call for a nurse. I felt like I had fluid gushing out. Turns out that my uterous did not contract back down like it was supposed to and I was hemmorhaging. I soaked through 5 chuck pads and 8 of those huge diaper looking maternity pads in less than 2 hrs. There was blood all over the bed, too. I apparently came pretty close to needing a transfusion, but luckily was still hooked up to my pit IV and so they started that back up in the hopes of making my uterous contract back down. Luckily, it worked. Seemed like the Polyhydramnios stretched my uterous beyond limits and that caused the problem.

Now, onto little Nathan. He was born so quiet....all he did was whimper. He was so sluggish, he would not eat and did nothing but lay there and sleep. They were all ok with this at first as it is normal for them to take a bit of time sometimes to coma around, but by yesterday morning, he still was the same and even the nurses could not get him to eat. Tehn, they noticed his breathing was "off"..fast and skipping breathing....they were unsure if it was apnea and took him for monitoring. Later they had neonatology back to look at him and they worried that since I was + for GBS and was allergic to most meds they treat it with, he may have been infected. They decided to take him to the NICU for obervation and told him if he did not eat, they would be placing an NG tube. Well, if I had only known that threats would make him toe the line, I would have done it LONG before then! He perked up once he got there, eating, and his breathing mostly settled. It is now just the suck/swallow/breathe reflex that is giving him fits, but he is getting better at taking his time and not overwhelming himself. He is also (WOOHOO) nursing and spending about 5 min on each side before finishing with a bottle. As of right now, it is looking like he can go home after his 48 hrs of obs and abx as the labs have, so far, returned looking good. He also has a lovely eye inf which is making his little eye all gooey and crusty and he also had a not so great circumcision done that makes our ped think he will need a referral to a urologist for a 2nd opinion to see whether he will need a revision. That poor little guy has been through A LOT in his first few hours and is a sure and strong fighter! I am SO proud of him!

I am home now, about 20 lbs lighter from peeing ut all the excess fluid and having the baby. I only have a small amt of swelling left in my ankles. I am feeling pretty good, with the exception of some pain/soreness from the episiotomy and some weakness from the blood loss. I am just relieved he is here and ok and doing as well as he is!

Nicholas spent a day with my parents today....away from the restrictions of the hospital. He had a blast! It was just what the dr ordered for him...a bit of respite. Although Doug and I missed him terribly, it gave us the chance to stay with Nathan in the NICU and not have to worry about keeping Nicholas on a short leash. Hopefully, things will straighten themselves out after Nathan (hopefully) comes home tomorrow.

We have not had time to download pics, but soon I promise we will get some up here for you to see! Take care and God bless!


Melody

Thursday, March 24, 2005 11:01 PM CST

Well, it was an interesting day. Melody is doing well. Nathan was not interested in eating much at all. In addition to that, he was breathing fast. His nurse took him back to the nursery to monitor him. After about an hour, she contacted the neonatologist to have her come take a look at him. She felt it would be best to observe Nathan in the NICU. Once he was in the NICU, they put an IV in and gave him antibiotics. After that, he was fed an ounce of formula, and to our surprise, he drank it in about 10-15 minutes! His next feed was three hours later, and Melody and I went to see him for that one. I gave him the bottle this time and he drank the entire ounce in about 10 minutes, maybe a little under 10 minutes! We certainly hope he keeps that up! His breathing seemed to be better; he only had about 2 or 3 times (while we were with him) that he had respirations over 100 respirations per minute. Nathan now at the earliest will be leaving the hospital on Saturday. We are praying that he does really well so he can come home on Saturday.

Nicholas had a pretty good day. He didn't start getting cranky until mid to late afternoon. He is really doing a very good job considering his world was just turned upside down.

I guess that is all for now. Take care and God bless!

Doug

Wednesday, March 23, 2005 IT'S A BOY!!!!!!!! 10:59 PM CST

And now...the news you have all been waiting for~ Baby P is here ~

Name: Nathan Andrew
Date: TODAY (March 23)
Time: 1:54pm
Weight: 7lbs 12ozs.
Length: 20.5 inches long
Hair: Lots

Mom and baby are doing well after a few minor setbacks. It's looking like they will be able to come home sometime by Friday at the latest. We will give the full story once everyone is settled at home. Nicholas seems to be enjoying his new baby brother and is learning how to be gentle. Thanks for all your thoughts and prayers. We sure needed them all. Take care and God bless.

Doug

Tuesday, March 22, 2005 9:04 PM CST

Well everyone....what an interesting visit. Turns out the baby is big, but as for actual measurements, the tech said that since there was SO much fluid in there and SO much room for him to move around in, it was hard to estimate weight. Apparently, it is easier to estimate when they are cramped in there. She said her measurements gave her just over 8 lbs but she would not at all be surprised if he came out smaller than that. So, no real or set info on the weight there. So then I went to see the ob. Turns out that it seems as if the terbutaline I was taking for the ctx either gave me or masked symptoms of gestational diabetes and I now have a condition called Polyhydramnios, which is TOO much amniotic fluid. A normal measurement is 10 and I have 20 right now. That plus a big baby makes for one huge belly and uncomfortable mama! No wonder it has felt like my skin is tearing from the weight I have been putting on lately! She thinks that all the excess fluid is also hindering him from being able to descend into the birth canal. So...BOTTOM LINE....I am to arrive at the hospital tomorrow morning at 5:30 am to get my water broken, hooked up to the Pit and TRY to have this baby naturally. If it is a no go, my ob is on call and will perform a c-section if the induction does not pan out. So, HE WILL BE HERE TOMORROW!! I am so relieved and so excited! She does not want to take any more chances with him and wants him delivered, so I am happy with the outcome. Besides that, I am already dilated to a 4-4.5 anyway, so it would just be a matter of time anyway. Now, if only I could sleep tonight!

That is about all for the update. Doug will be posting tomorrow night or the next morning at some point with pics and an update! Keep looking back if you have not seen it yet! Take care, God bless, and please think of us tomorrow!


Melody

Monday, March 21, 2005 9:54 PM CST

Well, another uneventful trip to the hosp in the early hours this morning. After talking for about 10+ min to the OB on call, she was unsure if my water had broken or if I had developed a slow leak, so she wanted me to come in for a pH strip test and to get checked. She remembered me from Sat and thought there may be a good chance I had dilated more since then. We figured it should be a quicker trip this time, but no such luck. I was unchanged from Sat and the pH strip indicated no fluid. But then, my bp decided to act up, forcing me to stay longer. It was a blessing in disguise though, as that gave me a chance to be seen by the OB on call (a different one from the one I had spoken to on the phone) and checked by her. She took one look at me, checked me, and asked if I had had an u/s yet to check on the baby's size. I told her we had been asking and my OB had thought one would not be neccessary. Her eyes got HUGE and she says to me "You NEED to get one TOMORROW" in this totally serious voice. I told her we had an appt with her on Thurs and could we do the u/s then and she says to me "I do NOT want you to wait that long...you need to get it TOMORROW". She then asked if we had been told hw big the baby was at that point and I told her my OB was guessing 7-7.5 lbs. She and the nurse looked at each other and she says..."what do you think? I was thinking more like 8.5-9 lbs" and the nurse says "that sounds about right to me". Ummm....whaaaaaa????? I am 37 wks tomorrow....WHAT???? Nicholas would have been born a week ago and was not even 6 lbs....and I am NOT a big person either....no hips and barely got a 6 lb baby out. Now, I sit here in utter shock, trying to wrap my head around the thought of a 9 lb baby and wondering HOW that could happen???? And how my OB did not think this baby was bigger? And how she thought I was going to push this baby out next week if I am still going to be induced? All I know is that this appt tomorrow is sure going to be interesting...... We will update you as we figure things out.

That basically took 1/2 of our day and the rest of the day was spent either napping or resting to make up for the early morning for Nicholas, and poor night's sleep for me. I am just SO looking forward to being able to actually SLEEP after the baby comes....even if it is in small spurts at a time. It has to be better than this insomniac stage I seem to be stuck in.

Guess that is our day. We will keep you posted! take care and God bless!


Melody

Sunday, March 20, 2005 10:02 PM CST

Still waiting, but interesting things are taking place that time will help us know if they are big enough to call in about, so still we SIT and WAIT....

Today was a day to finish up loose ends around the house (esp nursery/playroom), run errands, and rest up. Doug took Nicholas to the park this morning on his trike after we ate a leisurely breakfast. He had a BLAST! All he could say was..MAMA...I slide! MAMA...I swing! He was so happy! Then, it was lunch and a nap for everyone. After that, we were off for some walking errands. Hoping those did some good, but no telling at this point.

After a quick trip into Babies R Us, I did not even make it to the back of the store before being instantly drenched in sweat and feeling shaky and lightheaded. I have occasional bouts with hypoglycemia (low blood sugar) and they are not normally too serious. But, when I am pg, they are BAD and INSTANTANEOUS and can knock me on my behind in a matter of a couple of min. Luckily, I made it out to the car and Doug realized what was happening and there was a salad bar restaurant in the same shopping center. After a root beer for sugar, and some food (mainly protein), I was feeling better after a bit. Talk about scary though! It only happened once with Nicholas' pg, and now once with this one too. Hope this is IT!

Guess that is about it for us today. Sorry I have nothing new and exciting to report! We will let you know as soon as there is something to say! Please pray for it to be SOON though! Take care and God bless!


Melody

Saturday, March 19, 2005 8:57 PM CST

Ugh! FALSE ALARM!! What a waste of an afternoon! We were told to go NOW and then, after 2 hrs of walking, were sent home. Actually, I was given a choice to stay, but they said no induction and I could not eat. By then, it was mid afternoon and I was dying, so I had to leave for some food. I almost did not get to leave at the last min as the ctx decided to freak as she was unhooking me. They came back to back for 5 min and every time she would try to unhook me, here would come another. Finally, she was ok with them after they settled and as she d/c us, told us she would not be surprised AT ALL if we ended up back there tonight or tomorrow. I am not so sure I want to keep running in and out of there, but with me being 3 and 80% and going from 4-10 in 2.5 hrs with Nicholas, nobody wants to take any chances either. The ctx were getting pretty strong by the time I left and one of the last burst of them was a GOOD one...she told me to remember how that one felt and when they were all feeling like or close to that one, to come back. At least I have a better idea now. What a day! Sorry for the scare!


At least we made it to Nicholas' little friend's birthday party at the last minute. We sure were NOT wearing what we had planned as we were still in our "don't want to get our party outfits dirty while horse riding" clothes from early this morning, but at least we had an extra packed for Nicholas and he looked good. We also happened to have the gift with us too, so we got to spend the last 30 min there. EVERYONE knew we were coming by the time we got there and we got more "I am so sorry's" that I really wanted, but it was ok. So much for slipping in unnoticed!

After the party, we decided to hang out at my sister's and check out all the home improvements they have made in the 2 mos since I have been there. All was looking well and they invited us to stay for a splurge dinner of pizza (as they are on the South Beach diet and pizza is a heavily regulated food!). We took themup on it and had so much fun watching the boys play with each other. It also helped for me to keep my feet up. I al also drinking a lot of water to compensate for the salt intake!

Anyways.....maybe sometime soon. The nurse sure felt like we were not long at all away from delivery now. I am keeping my fingers crossed! Take care and God bless!


Melody

Friday, March 18, 2005 10:02 PM CST

Still we SIT and still we WAIT........... I walked a mile at the mall tonight, so keep your fingers crossed!

Slow, quiet day here today. I am learning to enjoy these days as I am sure that in the VERY near future, we will be minus the quiet a lot of the time! Nicholas was trying to set up the TV tray on the floor in front of the TV as I had promised him a "picnic" lunch today to watch Dora while we ate. All of a sudden I heard him screaming, so I ran into the living room to see what happened. He was holding his hand out and had pinched his thumb in the hinge of the tray leg. He was crying and saying "Dr. Cohen (his ped) fix it! Bye Bye!! Dr Cohen fix it.....bye bye mama!". It was cute, but how many kids at the ripe old age of 2 know how to ask to be taken to their ped to have something looked at....or even KNOW their ped's name even?

Thankfully, after close observation, he seems no worse for the wear and it seems like we have avoided a trip to the ped with a kiss from mama instead! What a sweetie, though! His ped would be proud!

We took Nicholas to dinner at his fave place....Rainforest Cafe. He totally CHOWED on calamari and corn and even helped out some with the ice cream we had for dessert. We decided to go out for a nice dinner (and let me walk afterwards) as we are HOPING that it will not be long before this baby comes and we will be missing dinners like that.

Guess that is all to report for now. We will let you know as soon as there is any change! Take care and God bless! Send contraction vibes , PLEASE!


Melody

Thursday, March 17, 2005 7:37 PM CST - Happy St. Patrick's Day!

Well, looks like I have traded one bedrest for another. I got the ok last week to go off meds for the preterm labor, but since then, my bp and water weight gain has gone nuts. I gained 8 lbs of water in a week! AHHH! My bottom bp number was up past the point where they worry, but she made me lay down again and since it went down, she is not going to admit me for observation just yet. The protein is still the same. I am to stay off my feet and keep my feet up to try and reduce the swelling. I got some terrible stretch marks that popped up between Tues night and last night. I felt like my stomach skin was literally tearing apart and turns out, in a way, it was. All the water weight has the swelling getting so bad, it basically tore stretch marks into my stomach. Talk about pain!!! She was glad, however, to hear that it sounds like things are progressing and when she checked me, I am now dillated to a 3 and 50% effaced. She thinks it will be a matter of days at this point. I think everyone is glad about this as the chances that I will be in full-blown preeclampsia soon are getting higher by the day! She estimates his size to be somewhere between 7 and 7.5 lbs now. I just hope he will fit out. Nicholas' not even 6 lb body was an awfully tight fit. Who knows. So, now, we continue to SIT and WAIT....

Nicholas and I enjoyed our day and had a special "picnic" lunch on TV trays in front of the TV watching Dora. Noggin has been switching their schedule up like crazy the past few days and Nicholas has been missing Dora. They have her on before he wakes up now and also in the middle of his nap. UGH! Nickelodeon has it on at several times during the day and this was one of them. He was in 7th heaven! He ate pretty well too!

Guess that is about all for us now! Take care, God bless, and we will keep you posted!


Melody

Wednesday, March 16, 2005 8:14 PM CST

Still sitting and still waiting.....

Weigh in day and HE GAINED 3 OZ!!! WOOHOO Nicholas!

Today was another quiet day, but Nichoas had a nice visit from his OT and she was kind of surprised to hear he was still toe-walking and even had learned to RUN that way! She was so sure that ignoring it would do the trick. She is thinking about giving it a bit more time and seeing what happens to it AFTER the baby comes. Then, if it is still a problem, addressing it from there. She was tickled that he has learned to say "Maybe Not...", especially when replying this to a question about sharing toys with his cousin! She was also impressed with the attention and time he gives to his coloring with a pen.....how he holds it and what he draws. He has REALLY gotten into this and has become very focused and detail oriented when using the pen.

Nicholas also got a visit from his godmother this afternoon when she came by to collect her keys from us checking in on her kitty over the break last week. We went to grab CiCi's pizza after Nicholas decided it was pizza or nothing for dinner. It was a nice visit and we had a good time visiting.

Other than that, it was another day around here. Tomorrow is my OB appt, so pray for progress! This baby is taking his sweet time now! We will update when we have more to share. Take care and God bless!


Melody

Tuesday, March 15, 2005 9:12 PM CST

Well, still we sit and still we WAIT.....

Today I have increased crampiness and added a backache into the mix. I am feeling pretty poorly lately and am SO looking forward to this baby being born SOON!

Today my sister brought the boys over and we had another playdate. As usual, they all had fun, up until naptime that is. Nicholas is still having issues with that, but that is a whole other story. He had a good eating day with lunch though, and ate 3 out of his 4 chicken nuggets from Chick-fil-a and a number of his fries! WOOHOO! I got a bite from the nesting bug and my sister helped me out by hanging the baby clothes in the closet while I folded and put the rest in the drawers. There are also now diapers in the drawers and the bed is cleared off and able to be used, so it seems like we are getting close to being set there as well.

The patio guy came tonight to show us pics/materials and we have just one question left for him to answer and we should be able to get moving on the patio cover. I am so excited! We also had dinner with a friend and her son and then ran a supposedly quick trip (but left with $100 worth of food!) to the grocery store.

Guess that is about all! Hope all are well! Take care and God bless!


Melody

Monday, March 14, 2005 8:32 PM CST

Another slow, quiet day here. We spent much of it recovering from yesterday! It was a totally fun day, but also VERY tiring! We both took naps.

Nicholas got his Easter outfit in the mail today and it is adorable! He looks really good in red and this outfit is a good compliment for him!

He spent a lot of today talking about the cows "that mooed" and the pig that "jumped in the water". He was obviously very impressed by what he saw yesterday and I am so glad he had a good time.

Guess that is about all for us. Another day of waiting and seeing when this baby will make his debut. Take care, God bless, and we will keep you posted!


Melody

Sunday, March 13, 2005 10:29 PM CST

Well, we went to the rodeo today and had an absolutely FABULOUS time! We got up and got ready to go...all dressed the part (we DO live in TX, you know!)....Daddy and Nicholas in wranglers, belts, buckles, and boots, and Mama in maternity jeans (yes...one pair actually STILL fits!) and boots. This was Nicholas' first time to wear his brand new wrangler jeans he got for Christmas and he also had a cute cowboy t-shirt to go with it.

We piled in the car (complete with ALL hospital baggage....just in case!) and drove to the train station. Our city put in a light rail train system a year or so ago and this was our first time to ride it. Nicholas LOVED it! We then decided to hit the Pig Races as we missed them last year. Nicholas loved watching the pigs race each other for an Oreo cookie and there was even a pig who dove into a pool of water and swam. This, he told us later, was his favorite part! Tgen, it was off to do some shopping. We bought replacement personallized dog and cat collars for both dogs and both cats and found a cool stick horse that looked like his beloved riding lesson horse, Beau, that he just HAD to have!

After that it was off to get some food. Let me just say...the rodeo has pretty much ANYTHING in the world you could ever want on a stick (chicken, sausage, corndog, pizza, cheesecake, gator, key lime pie, you name it!) and ANYTHING fried (fried twinkies, fried oreos, etc, etc). We decided on a huge corndog for dh, chicken sandwich for me and a kiddie meal of chicken and fries that Nicholas ate like 4 bites of....all for the low, low price of $21!

We then hit the Kid's AgVenture plaze where Nicholas saw a real beehive and how it works, thoroughly enjoyed the petting zoo, and participated in a coloring project that he brought home. We visited the cows and heard them MOOing loudly. Then it was time for the rodeo, where we chowed on popcorn! Nicholas really loved seeing all the events and really liked the bull riding...whew, those critters are DANGEROUS!

By then, we were TIRED and decided to stop for something sweet on our way out. We settled on begniets, drizzled in chocolate sauce, and ate them while listening to a really cool Tejano band play. Nicholas LOVED the music and decided to put on an impromptu dancing show for everyone around! He did very well!

We ended up getting home at around 8:30, very tired, but having enjoyed a fabulous day! And no....nothing significant came of all the MILES we walked today. Oh, well....he will be here soon enough!

Guess that is about all for us. We are tired and ready for bed! Take care and God bless!


Melody

Saturday, March 12, 2005 8:41 PM CST

Quiet day today.....wish I had more to report! I took my last dose of meds at 5 am this morning and now, we wait. The contractions had picked up tonight to about anywhere from 8-14 in an hour's time, but nothing consistant or regular enough to warrent a call. Tomorrow is the rodeo for us and we have high hopes for all the progress that walking can possibly do, so pray for a lot of contractions!

Nicholas had his riding lesson today and Beau, the horse he rides, was being so ornery. HE decided the lesson was over, dropped to his knees, and rolled over on his side, to get Nicholas off of him. Nicholas was not hurt at all, but sat there stunned for a few moments and eventually found his voice to share his indignation at the whole thing. Beau, after that, was let loose in the part of the pasture where horses normally aren't allowed so they could keep an eye on him, just in case, and he decided to get into EVERYHING he was not allowed to touch....horse treats, pretzels, you name it! Needless to say, it was soon determined that he was totally and completely fine and he was put back in the boys' pen where he belonged!

Doug had a productive day as well and in addition to moving Nicholas' car seat and installing the baby's, he also delivered the old lawnmower and other items to a local charity and unpacked the new mower and put it away in the garage. He also got a great start in the guest room soon-to-be nursery/playroom. The closet organizer is installed and many of the items in holding to be moved to storage have been successfully moved. The car was cleaned out some as well, so that leaves us plenty of room now for all the hospital bags and necessities for the baby's arrival. It seems like we are mostly ready now! All we REALLY need now is the baby!

Guess that is about it for now. Take care and God bless!


Melody

Friday, March 11, 2005 10:13 PM CST

Oh, my...what a day yesterday! Sorry for the lack of update. Where to even start....and NO....no baby yet! Here is a rundown of the day's craziness....

Well, first my OB appt. I thought the baby felt a lot lower yesterday morning than he did the day before. Turns out he dropped sometime overnight. The OB said it was pretty obvious, but he still has a bit farther to go to get where he needs to be. I am somewhere dilated between 1 and 2, up from 1cm and now effaced to 50%, up from 30%. I thought the ctx were feeling stronger this week....not more frequent, but more intense, which the meds cannot do anything for. I am gaining water weight like crazy....it has been something like 15 or so lbs in the past month. Ugh. With the swelling I woke with yesterday morning, I was sure that my bp would be up, but luckily, it was actually better than last week. The OB was surprised at that, too. She admitted to us as well that she never thought I would have made it this far and she is thrilled with the progress. She was sure we would be having a baby long before now. She estimated him to still be head down and around 6 lbs now. He is a bit bigger than Nicholas was at this same time, but not by a lot. Basically that was about it. She thinks after I go off meds, it will be about a week. We will see if she is right.

Then, 9:30 rolled around... Nicholas has had 3 instances in the past couple of mos...2 buttons that came out accidentally and 1 button replacement...that were really bad and hard on Nicholas. He would freak and start screaming and the stoma would clamp down in seconds, leaving us barely able to get another button in. So, I TOLD Doug DO NOT change the button by yourself as we need to have 2 of us to hold him down and switch it out FAST so we do not have problems. After getting home from my appt and dinner after, and logging into the computer, to update for the day, I hear this screaming from the other room. After it kept going on, I finally asked him what was going on and he said that he was changing Nicholas' button. I was so upset as he never even told me he was thinking about doing that and by the time I got out there to help, it had been almost 15 min. He did not even have the emergency MicKey button that we use when we cannot get the Cubby in, and by the time he did get it, it was to late. The stoma was TINY! Nicholas was screaming, crying, and hysterical, and trying to push Doug away saying Daddy NO! I made him stop after trying myself and realizing it was a lost cause. So, we had to change back into our clothes, slap a band-aid over what was left of the stoma, and pile into the car for an unexpected trip to the ER at Texas Children's...about 45 min drive away! Luckily, we were able to get a MicKey back in at the ER, but not until we both had to hold him down while the surgeon on call basically dug the dilator in the stoma and forced the button back in. He was so totally surprised at how small it had gotten in such a short amount of time. It took a while, but finally went in. Poor Nicholas was so traumatized that he was screaming all his breath out and turning purple and screaming NO NO. I never realized you could use such force to get it back in....I thought I was being almost too forceful, but I was not even close to what the surgeon was doing. And, we were not the only ones who had this problem...another family brought their 3 yr old in just before us for the same thing! Must have been in the water! At least they were able to page the surgeon to do the dilation and he was readily available, since if he could not have done it, we would have been #115 in line to see the ER docs last night! We got home at 12:45ish and were too tired to do anything but get Nicholas settled and then drag ourselves to bed.

At least today was better! Boy....my family sure is great! After the terrible night Nicholas had last night, he deserved some fun today. They came to visit and drive us to the mall for lunch and Lunar Mini Golf! My sister and her 2 boys, and my mom and dad all came over this morning and my parents drove me and Nicholas while my sister followed. We ate at Johnny Rocket's (YUM!) and then went for a really fun game of mini golf...Nicholas' first time ever! He even got 2 holes-in-one (with a little help from my mom, of course!)This place was cool....painted all in Neon colors and darkened with blacklights everywhere, which made the paint glow! The clubs and balls even glowed! I got to hold my 6 mo old nephew and mostly watch while the 2 boys and my parents and sister helped. I also got to take a few pics. The boys (and my parents!) had SUCH a BLAST! Boy, were they tired when we left. They also helped me with washing and folding the laundry for the baby after we got home as we have had all the little tiny clothes from Nicholas stored up in the attic for a while. I even got a clean kitchen out of it too. Pretty cool day if you ask me!

Tonight, this baby is trying to decide how fast he wants to come out. I have been contracting anywhere from 8-13 times/hr and 14 is the cutoff to call. I decided to take my meds through the 5 am dose, even thought I do not have to take anymore after midnight as I really WANT to sleep tonight! Last night was quite an ordeal and I need to recover sleep-wise from that first! The 9 am dose will be the first one not taken, so anything is possible after that. We will try REALLY hard to update every night so as not to freak anyone out by missing an update and causing panic about the baby! Tomorrow is Nicholas' riding lesson and some "gotta do it before the baby comes" chores and Sunday is our day of walking at the Houston Rodeo. We will see if we can get this little guy to show up this weekend!

Guess that is about all. Take care and God bless!


Melody

Wednesday, March 9, 2005 9:44 PM CST

Weigh day today....ugh. ot good as he lost weight.

So, our GI is getting concerned about Nicholas. He had us to add an additional 2 hrs to the overnight feed a few weeks ago to boost calories and help Nicholas gain some weight as he had not had a net gain in months. He did ok for the first 2 wks and actually gained some, the next 2 wks were stable with no gain or loss, and now this past week, he has lost again and we are back up another hour overnight to 8 now. 8 hrs is the max we were ever on and that was at a rate of 45/hr (or was it 30?). Now we are on 8 hrs of 93/hr. He is getting over double what he ever got before, is still eating as he normally does, and is still losing. There are a lot of things he is tossing around, but nothing we are going to act on until after the baby comes.

Nicholas woke early this morning, had to cry it out, woke again, still early, and came in to snuggle with me and fell asleep. He is just exhausted and not sleeping well. He was up at least once in the night too. He tried so hard during nap time and stayed in for a 2 hr period where he woke several times and put himself back to sleep instead of crying. We are making progress, but not with whatever is waking him all the time. At least he is trying to sleep, poor baby.

Since my mom is on Spring Break this week and I am almost off meds, we decided it would be ok to venture out to storytime at the library. My parents drove and helped me out with him. Thanks guys! Boy can I just tell you how big Nicholas' eyes got when I asked him if he wanted to go? It was almost like he did not believe it could be true. His smile, though, when he was singing and dancing and playing with his little friends was the biggest I have seen in literally months. I had tears in my eyes as I was so happy for him to be able to do something he loves so very much for a change. It also broke my heart to some degree to know how much he has missed the simple things like this and how much this pregnancy has taken from him. He was floating on cloud 9 for the rest of the day. I am thrilled he had such a good time. It did me a lot of good today to see that.

Guess that is all for today. Hope all are well and healthy. Take care and God bless!


Melody

Tuesday, March 8, 2005 9:08 PM CST

Nicholas sure had fun today! My parents came over as well as my sister and her 2 boys and we all had a wonderful visit. The boys played and laughed and the adults relaxed and it was just a good day all the way around. We had a yummy lunch, the boys (well, mostly NOT Nicholas) napped, and we all visited with each other. He is very tired and about 10 min from bed, so I am hoping he sleeps well tonight.

I am being super-picky about Nicholas' Easter outfit. I purchased it several days ago and just got it in the mail and for some reason, it was not exactly what I wanted and I am not sure what to do. So far, no luck in finding a replacement, so who knows. I bet it is these raging hormones! I hope the baby comes really soon! AHHHHH!

Guess that is it for today! Hope all are well and take care and God bless!


Melody

Monday, March 7, 2005 9:49 PM CST

Well, all I can say is that Nicholas never ceases to amaze me.

He woke this morning, earlier than usual, screaming his head off. I decided to go get him and bring him back to snuggle with me in bed and we watched Noggin for a while so he could settle down. After a bit, I got a call from my sister and he got antsy, so he got down from the bed and let himself out of our room to go play in the living room. I could hear him and sort of see him, and he was making normal play noises, so I was not too concerned. The next thing I knew, I could hear him in the kitchen, where he likes to play cars in the floor. I could see both chairs at the table (not that he has had any thought yet of using them to reach no-no's) and knew he was not into anything. A minute later, in he comes to our bedroom with a banana that he had gnawed open by himself and was chowing down on. After talking to dh, it seems he left the too-ripe bananas on the counter after replacing them with fresher ones in the bowl we have for them. He was meaning to throw them out and forgot, but Nicholas apparently saw them and could reach them from the floor, so he decided to help himself. I could not believe it....especially as he is not really a breakfast eater due to overnight feeds. He even ate 1/2 of it! I was so thrilled, even though it threw off the whole morning schedule, as he could not take his prevacid for a while after that. Oh, well.....I was so proud of him for getting something to eat when he wanted it!

He is also having some trouble napping lately. I am sure it is from all the crazy thingss going on here with the pg and bedrest and all, but we are having to resort back to letting him cry it out and it is just about killing me. It makes me contract so badly as it is stressful and heartbreaking to hear. I know he needs it though, as today, after his crying jag, he passed out sleeping for 2 hrs. I know if I give in and bring him to nap with me, it will not work for anyone once the baby comes and I do not want to set him up for needing me to get to sleep. He has ben doing SO well on his own and never needs help at night with it. I hope this is just a temporary road bump and he will settle down after a few more days of realizing he needs to nap and do it by himself as he always has. Wish me strength and sanity to make it until then!

My mom is on Spring Break this week, so Nicholas should be able to see a lot of them. I know he will love that! It will be something special this week and hopefully, we will have the baby by this time next week. Only time will tell!

Take care and God bless!


Melody

Sunday, March 6, 2005 10:31 PM CST

Slow, quiet day here. It was nice to laze around in bed for a while, eat a nice weekend type breakfast, and relax. After a bit, Doug put the double stroller together, with Nicholas' help, of course! We then ran a couple of errands and found some really good deals on an Easter gift for the baby and a hospital "keep Nicholas busy" type toy for his goodie bag.

Doug ran to the grocery store for some staples while Nicholas and I relaxed here watching Dora, and then he made a really yummy dinner that we all enjoyed.

Tomorrow it is back to the grind for the both of us, but I am so happy to think this is our last week on meds!!! Our new son will be here anytime! WOOHOO!!! We are almost there! My mom is off on Spring Break this week...unusually early thing year....so, we might be seeing some of them this week. Nicholas will love that, I am sure!

Make sure you look at the updated pics in the photo album! Hope all are well and healthy. Take care and God bless!


Melody

Saturday, March 5, 2005 9:08 PM CST

Whew! What a day! To say I am exhausted would be an understatement!

We started off early this morning getting up and ready for the Katy Rodeo Parade that Nicholas took part in with his hippotherapy group. He was to dress like a circus performer and looked adorable in a onesie, matching pants, and silver sequinned belt. We arrived and staked out our places on hay bales on the float. It was fun and Nicholas had a good time. The horses were wearing animal masks made from fabric and everyone was dressed as circus performers and the littler guys on the float were able to throw candy, beads, and little straw whistles. Nicholas has developed quite an arm I must say as he was able to throw the candy all the way to the curb! He had a ball! I, on the other hand, was aching all over from the very unforgiving hay bale I was sitting on! Who knew that such a little guy could make your leg fall asleep from just sitting on your lap? The baby seemed to enjoy the bumpy ride though, and he was moving all over the place! I am still sore from the sitting earlier, but it was such a fun time otherwise!

After the parade was over, my parents drove us back to our car and then we all went out to celebrate my dad's birthday for lunch. We all had a good visit and the food was yummy!We then came home and crashed! It was an early morning and we were all tired from the day's festivities. All of us slept and woke up in time for an early dinner with friends before everyone scattered for their spring breaks this coming week. Again, it was good food and good company. I think tonight is going to be an early night for everyone as the nap did not seem to be quite enough rest! I am looking forward to sleeping in tomorrow.

Please be sure to check out the updated pics in the photo album as there are some from the parade and one of Nicholas yelling HURRY to the baby in my belly. It is a sweet pic!

Take care and God bless!


Melody

Friday, March 4, 2005 10:19 PM CST - Welcome to the world, Sameer! Congrats, Susan, Rishi, and Karuna!

Well, an exciting day! My friend had her baby! Makes me that much MORE ready for our little guy to come!

My sister came to visit today. We had a good visit. Her son and Nicholas together are just a riot sometimes...makes us laugh and they crack each other up too. It is so funny to watch them ham it up for the other! They had fun playing and eating, but naptime was another story! Nicholas decided to go on a nap strike today and ended up having consequences for it that he did NOT like at all. Hopefully he will be dissueded to try that again after that. I sure NEED him to stay on track with naps right now as I am dead tired and napping myself most days, and will surely need the naptime after the baby comes. I sure hope this is it. Naptime has been a struggle all week and this was the icing on the cake. Wish us luck!

We got the rest of Easter taken care of today. Nicholas' adorable outfit ordered off eBay, baskets bought (and one for the baby picked out by Nicholas in case he is here by then), and candy and little basket stuffers purchased so we are ready for things now in any event. We also got some last min nursery items purchased as well, so I feel tremendous relief that we are ok now regardless of what happens. We just need to pack a few more important items for the baby in my bag, finish packing Nicholas' goodie bag, and take care of any stroller assembly. Then, I think we are done!

Guess that is all for now. Tomorrow we are in the Katy Rodeo Parade with Nicholas' riding lesson organization, so we will try to get some pics up for everyone by tomorrow evening, provided we have no additional problems tomorrow. Take care and God bless!


Melody

Thursday, March 3, 2005 10:40 PM CST

Nicholas had OT this morning and knocked the socks off the therapist and me when he said a 5 word sentence! He said "I color that star, too!" I am so thrilled with all the progress he is making and am always looking forward to the new and exciting things he is going to amaze me with each new day!

Other than that, it was just the usual routine around here today. Play, watch a couple of shows, eat, nap, and then off to the drs.

Had a near miss with the hosp again this morning as the baby decided not to move again....even after drinking a ton of OJ. Thank goodness he got the hiccups at the last min or we would have been heading in for a hook-up and check-up.

Ok, let's see.....weight was up again, swelling is getting worse. She did not even tell me how much I gained since Mon, so I am guessing it is not good. It is all water weight though. Still protein, but no change there, bp was up since Mon and I could not leave until I laid down and it was down enough for her to let me go. The bottom number is basically at the point of concern now, but since it did go down when I laid down, she said we will try to go one more week and see, unless I have problems between now and then and then I should call and we would make decisions from there. I feel like the stay-puft marshmallow girl from the Ghostbusters movie...all puffy and swollen. Ugh!

I have a lovely mouth yeast inf with thrush from the last round of abx, so I get the lovely Nystatin all to myself this time. I bet Nicholas is happy it is not him this time!

9 more days until I am off the ctx meds! Can you tell I am ready?!?! Now, if I could just get some sleep between now and then.....

Take care and God bless!


Melody

Wednesday, March 2, 2005 10:24 PM CST - HAPPY BIRTHDAY GRAMPY (DAD)!!!!!

Today was Nicholas' OT session. I was very glad to see her as Nicholas has had some very concerning behavior as of late (toe walking, acting out, reactions to certain environments) that had us worrying. It looks to her as though it is more of a behavioral issue than the sensory problem we were afraid of. That is a good thing, although it is going to be hard to "retrain" him. She believes he is acting out for attention due to the changes of late and the upcoming birth. She also thinks it will get worse before better. Nicholas is extremely intelligent and she picked up that he is most likely feeding off our worry for his sensory issues in the way he is acting out and thrives off the attention he gets for it...negative or not. She wants us to ignore the undesirable behavior and praise for the appropriate ones. She also does not want us to even mention feeding issues in front of him as to hopefully avoid putting ideas into his head for new and worse ways to get our attention. I agree totally as this is the one thing I am most concerned about with the baby coming is for him to stop eating due to stress or change to routine or whatever. He does not need much of a reason at all, if any, to stop eating all together, so we will try our hardest to avoid problems with this. She will be back in 2 wks and we will see how he is doing with us ignoring the behaviors he is expressing now. Hopefully they will be better.

My mil came today and Nicholas had a good time with her. She read to him and we had a nice lunch together. She also helped with some cleaning and laundry. It was a big help. It was also a nice diversion for Nicholas as it rained cats and dogs all day long and kept him from going outside to play.

Tomorrow is therapy again (different one tho!) and also another OB appt, barring any unforseen problems in L&D for the doc. I am hoping for bp to be lower. Doug also got a call from a vendor today about free rodeo tix for the 13th, the Sunday after I go off meds. We are wondering if it is a sign that I should go and walk this child out!!!! We will run it by the OB again and make sure we have her blessing first!

We will update about the appt tomorrow. Take care and God bless!


Melody

Tuesday, March 1, 2005 8:41 PM CST

Slow day today...the usual boring schedule. Woke, meds, changed Nicholas, played and watched Oobi and Dora, ate, napped, etc. The only snag was that Nicholas refused to nap, basically. After fighting with him for 1.5 hrs, I finally brought him into our room and laid down with him and was able to get him to sleep in no time flat....he was exhausted.

We are looking at Easter outfits for Nicholas on eBay and found some cute ones....just waiting on the auctions to become closer to ending to see how much they are going for before deciding to bid. So far, nothing, but we will see....

Looks like Nicholas will get to spend time with his Grandma and his OT tomorrow morning...goodbye boring usual schedule! That should shake things up a bit!

Guess that is about it for now. Hope all are well. Take care and God bless!


Melody

Monday, February 28, 2005 8:47 PM CST

My OB appt was supposed to be last Thurs, but she was caught in L&D all afternoon and they had to clear her schedule. They gave us the choice of seeing another dr or rescheduling for Mon. I figured we would be seeing her on Thurs anyway and SHE is really the only one who could answer the ?? I had, so there was no point in seeing another dr or seeing her Mon and then again in Thurs, so I cancelled and figured we would pick back up on Thurs with the reg schedule. Well, I sure did not count on the weekend we had...ctx ALL the time, extra pills being popped often and not slowing them enough, and my pulse (which I have to take before EVERY pill) was running 103-114 range instead of the usual 88-96 range it has been since the last dosage increase. I was also having a LOT of mucous discharge and low back pain, so after narrowly missing a hosp trip 2 nights in a row, I decided to forgo waiting another 3 nights of this and go in today. We had a difficult time scheduling the appt, and they were trying to send me to the hosp even though the ctx were not bad NOW. Ugh. They had even called ahead and told them we were coming and my OB had to call back and cancel. I got in before lunch after calling the triage nurse and explaining I probably just needed a med increase.

I am so swollen....gained 5 lbs of water wt in 10 days....she was NOT happy. I am getting some carpal tunnel from all the swelling in my hands/wrists and my face looks like a balloon. Bp is up also...both #'s borderline this time and she was also not happy about that. Still protein, but no change there...my only saving grace this time. She checked me and I was still unchanged, so good news there as she and I both thought there would be some after my symptoms from the weekend. As far as the ctx go, since I am 34 wks now, she said I could safely have up to 12 ctx/hr before a hosp trip or extra pill, so I am glad to hear that news as I SO do NOT want another hosp stay. I get to stop the aspirin therapy today...WOOHOO and the terb gets stopped on Mar 12, so I finally got a date there! I also got the dates I am NOT to go into labor as that particular doc will stop it whereas the other docs would not. She also said the baby had dropped some, but still not quite low enough to make sure it was a head she was feeling and not something else. I am pretty sure he is still head down though, as the hiccups he has are far down and near my hipbones, depending on which way he is facing. She still wants to see me on Thurs as usual as she is not happy with the wt gain or bp and wants to make sure those stay managable. The desk had cancelled my appt though as they thought since I was seeing her today, I would not need it. After all her setbacks in L&D 2 days this week, her next open appt is like Apr 12 and I was NOT happy, but luckily it was still soon enough that the appt was still untouched. I got it back. Whew! TG I have all my other appts sceduled up through the induction date, so we are all good there. Guess that is about all about that.

Nicholas has been doing well today. He was glad to get out of the house. He also got to go outside with daddy before dinner and play basketball. He was in heaven! While they were out threr, we got a quote done for a new patio cover. I am hoping the price will be right. We should know in a few days.

Guess that is about all. Hope all are well. Take care and God bless!


Melody

Sunday, February 27, 2005 8:43 PM CST

No rain today, thank goodness! Nicholas did some running around outside and blew off some steam!

It was pretty quiet...we were homebodies today...did some chores, gave the boys haircuts, worked on the computer, rested, and ate. Nicholas' godmother came over and we grabbed a yummy early dinner at Chili's, and mostly just enjoyed the other's company. Pretty lazy, but it was nice.

That is all for today...take care and God bless!


Melody

Saturday, February 26, 2005 9:12 PM CST

Rain, rain....GO AWAY!

My poor little guy, who always looks forward to the weekends for the riding lessons and the chance to run around outside and blow off some steam and energy was housebound today due to rain! He was so disappointed and has been difficult today as a result.

The whole day was kind of a bust actually, as the store we drove so far to look at, does not stock the one type of carseat that nobody else has anymore. UGH. At least we got to eat at one of our favorite restaurants for lunch.

Tomorrow should be relatively quiet. Nicholas' godmother is coming for a meal tomorrow...either lunch or dinner. I am giving the boys haircuts tomorrow also...that last one hopefully before the baby comes! That should be about it for us.

Take care and God bless!


Melody

Friday, February 25, 2005 9:24 PM CST

I decided to mess a little with the website last night as I was bored and bored with the look that it has had for mos now. I love the turtles! Enjoy the new look!

Nicholas lost his button today. I do not know what it is about these Cubby buttons of if it is just him, but his stoma sure does clamp down fast when it comes out and after almost 20 min of trying and traumatic hysterical crying from him (and some from me!) we were about a min from going to TCH for dillation and Doug was ready to hang up at work and come get us when I was finally able to get our emergency MicKey in. He took a huge breath and relaxed his ab muscles long enough for it to pop back in. Since then, he has been reduced to a clingy, traumatized, little guy. He has wanted nothing more than to be held or soothed or reassred all day and cannot get too far from me before he starts freaking out. All of that stress really made the ctx kick in for me as well. I have NO idea how it happened either. One min I was holding him, the next he was sitting on the floor whimpering and clutching his belly with the button laying on the floor next to him. This poor kid does not need a single other thing to happen to upset his little world. Doug and I were just able to switch the MicKey out for another Cubby and we are saving the MicKey in case this happens again. It seems like the MicKey is the only one that will actually fit back in after they come out. UGH. I am just so sad and heartbroken for him. He about came unglued when we swapped it out just now and that went fast. Poor guy has so much stress and change right now and does not even have the first clue how to handle any of it. I wish I knew what to do to make him feel better.

I am just really glad it is Friday! I think Nicholas will enjoy spending the next few days with the both of us and being able to stray from the boring, bland of the weekdays and enjoy the weekend. At least he has riding lessons tomorrow, swampy and muddy as I am sure it will be! I hope there is NO rain. We may venture out to a baby store across town tomorrow to see about car seats and measurements as the new baby will be needing a bigger one within a few mos and we need to start thinking of which one to get and whether or not it will fit in our car! It is down to getting the same one Nicholas has for the baby or getting the next bigger size up for Nicholas and giving his current one to the baby. Depends on how the one fits Nicholas and how they both fit in the car. We will see, but it needs to be done before we move Nicholas' car seat over and install the carrier bases in the car for the baby.

Guess that is about it. I am looking forward to sleeping in at least some tomorrow! Take care and God bless!


Melody

Thursday, February 24, 2005 8:18 PM CST

Not much to report today. I did not have the OB appt as something came up and the dr could not be in the office this afternoon. Since the questions I have are specifically for my dr to decide on and answer and I will be seeing her in a week, seeing another dr or rescheduling for Mon did not seem to be worth it, so I will be skipping this week's appt and seeing her next week.

We had a really bad storm this morning that came through and almost stranded Doug at home due to high water and flooding in our own street. He made it to his seminarin our SUV, but barely and was late. 1/2 the employees of the company hosting the seminar were not there yet either, so they delayed the start for a bit to accomodate the latecomers as the weather weas so inclement. Luckily, it cleared up by midmorning and things settled down after that.

Another quiet day here at home. Nicholas has been eating fairly well today and his diaper rash is looking a bit better...slowly but surely, so we will see in the morning how it seems before deciding if he needs to go in to have it checked.

Guess that is all for today. Nothing exciting! Hope all of you are well! Take care and God bless!


Melody

Wednesday, February 23, 2005 10:13 PM CST

So far so good....no noticable fever today and still no symptoms. He does, however, have a terrible diaper rash that the ped's office nurse's line thinks may be fungal. It is peeling and looking red, irritated, and inflammed. We are to alternate using Lotrimin AF and diaper cream, but I am not seeng it improve like I want it to. We will take him in on Fri if it is still not looking healed by then.

Quiet day here at home. My sister is homebound as well working on potty-training with her toddler....she is tired of accidents and getting discouraged. He may not be quite ready yet....only time will tell.

We found some brown leather sandals for Nicholas today at a great price to put away for the summer. Hoping they will fit a bit better by then as they are a bit on the big side now, but very cute with little fish cut-out on the toes and colored fish on the soles.

It was also weigh-day here and Nicholas has gained a grand total of 4.5 oz for the week and 11 oz for the 2.5 wks he has been on the increased overnight feeds. He is finally looking a bit less skeletal and more like he used to. it is the second week in a row he is over 26 lbs! WOOHOO!

Tomorrow is my weekly OB appt. We will update that tomorrow after we go. Not much else to report here. Take care and God bless!


Melody

Tuesday, February 22, 2005 8:29 PM CST - HAPPY BIRTHDAY DOUG!

Today was a pretty quiet day around here. Nothing major to report. We played, ate, and napped. Nicholas has been running a low grade fever, but no outwardly obvious symptoms besides a terrible looking diaper rash that is red and peeling and the nurse's line at the ped's office thinks may be fungal. We are keeping a close eye on it just in case, but luckily, he seems to be holding his own so far with whatever is bothering him.

Doug turns 33 today! Nicholas and I sent him e-cards at work and had a big balloon bouquet delivered to him along with a tasty bag of candy to weigh it down. He was surprised and happy about that. For dinner, we went to Outback and pigged out! YUMMY! No embarassing rounds of Happy Birthday, though, but Nicholas made up for that when we got home. He is a sweetie!

Guess that is about it. I am finishing early so I can spend time with my birthday boy! Take care and God bless!


Melody

Monday, February 21, 2005 9:39 PM CST

My sister came today as her husband has been hard at work converting their attic to 2 extra rooms. It is way easier for him to work without the kids underfoot. So, we had the pleasure of a visit from them today! The boys played, we chatted and ate, and a good time was had by all.

Nicholas also had DT today. His service coordinator is due just a few weeks behind me and is lucky enough to have gotten to this point with no major problems so far. She had a good time playing with Nicholas (when he would cooperate) and singing with him as well. I know we will miss her when she goes on maternity leave!

We shopped this evening for a cool gift for the baby to bring to Nicholas. We found a cool Dora the Explorer 3 disc DVD gift set on sale and decided to get that and a Baby Einstein flip deck of travel cards. Both things I am sure he will love and he picked out an adorable praying giraffe (that matches his own praying elephant) for his new brother's crib. They should enjoy that special moment of exchanging gifts after they meet for the first time.

We are looking into purchasing a play house for Nicholas with some tax return money, along with putting a patio cover on the back of the house. We have someone coming to give us an estimate early next week and should be able to decide soon if that is the route we would like to go. We are hoping to get it done before it gets too hot and noisy. We also are looking into a few houses on sale in the most recent ToysRUs catalog.

Guess that is about it for now. A pretty uneventful day. Take care and God bless!


Melody

Sunday, February 20, 2005 8:59 PM CST

Today was a long, exciting day. We were going to try to let Doug donate blood again today, but we took his temp ourselves before we went to see if it was even worth trying to show up and donate. Well, his temp according to our thermometer was still too high, so we skipped it today. No sense in wasting their time on their busy day.

We met Doug's parents at Red Lobster to celebrate his birthday with lunch. It was yummy and we had a good time. Doug got a check to use with the money for a gift Nicholas and I are pitching in for a new lawn mower, which we went and picked out and purchased after lunch...to make sure he got just what he wanted. His parents sent us home with a birthday cherry pie and some leftover pineapple upside down cake. YUM!

Later, it was home for quiet time and a nap and then my parents came over to celebrate a birthday dinner with us. They took us to a bar-b-que restaurant and we basically pigged out! The food was wonderful. We came back home to a present of a beautiful tie and a delicious birthday dessert of strawberry shortcake. YUM! It was SO good...especially at this time of year when they are not in season!

Now, we are relaxing after Nicholas has gone to bed and trying to ignore the desserts calling our names from the kitchen. I am still digesting the strawberry shortcake from earlier, but now the cake and pie are calling to my pg mind and I am shamelessly listening! I think the battle is lost....better go get some before it is too close to bedtime! Take care and God bless!


Melody

Saturday, February 19, 2005 8:29 PM CST

Today was riding lessons again. The Katy Rodeo Parade is coming up in 2 wks and the first horse show is coming up on April 8. We are getting into the thick of show season already! The paperwork came home with us today!

Nicholas has discovered he can sing! And, now he wants to do it all the time! It is so cute! He can sing a few words of Twinkle, twinkle little star, the ABC song, and Row, row, row your boat. He just tunes in his little sweet voice with the words he does know when he sings along with one of us and kind of sings/hums something unintelligible when he does not know the words. Although I am very partial, I think it is SO cute!

Doug tried to donate blood at our church today and was turned down as his temp was 2/10ths of a deg too high. We are going to go back tomorrow and try again. We are also meeting his parents for lunch somewhere to celebrate his upcoming birthday. Also, we need to go shopping for a new lawn mower with all the bells and whistles.....the thing Doug has asked for for his birthday. It will be to replace the old, broken, no-frills model we bought when we were newlyweds. Then, off to meet my parents for dinner to celebrate the same. Sounds like fun to me!

Take care and God bless!


Melody

Friday, February 18, 2005 10:31 PM CST

We are back from San Antonio and Nicholas' latest GI appt. He was happy with the recent weight gain Nicholas has had since upping his overnight feed by the 2 hrs. He has gained about 7 oz in the past 1.5 wks, so that puts him at a whopping 26 lbs 1 oz and 33 in tall. He is in the 5th %ile for height and about the 15 %ile for weight. Not bad. He was happy with his height to weight ratio though and said that in looking at dh holding Nicholas, that they are built a lot alike (dh is about 5' 7" and weighs about 145 lbs) and Nicholas will most likely take after him with his growth (luckily for Nicholas!). So, he hopes we can keep this ratio up. He was very happy with the advances Nicholas has been making in eating and is glad to hear Nicholas is not too picky and willing to try most food and still interested in food even if he cannot eat it. He has also been saing EAT to me nearing lunch time a few times over the past few days. Dunno if it is from our boring and predictable bedrest routine at home or if he is actually recognizing hunger cues, but no matter...it is a start! He wants us to leave all meds and feeds as is for the time being as, with the new baby coming, he is unsure of how Nicholas' reaction will be to the baby and so he would rather us keep up the current overnight rate to make sure Nicholas does not lose weight when the baby first comes and he is adjusting. This is also the reason he wants to wait and do any testing he is thinking of and we discussed until afterwards also. He wants us to come back in 2 mos to give Nicholas time to adjust to a new baby and also to make sure we are not bringing a less than 1 mo old baby into a dr office and expose him to unnecessary germs so early. Yet another reason why I love this dr so much. He still thinks we need to go see Dr Hyman as he is mainly concerned with exactly WHERE this motility issue is. He says he knows there IS one, just not sure on its exact location. He wants to make sure we are targeting treatment to the best of our ability instead of guessing and waiting to see if whatever we are doing is working....as we have been doing and seeing very limited results. He is pretty certain though, that this is a self-limiting disorder, meaning at some point, he SHOULD outgrow it. Dunno yet how soon or IF he will though...hence another reason for going ahead with the testing in KC. He did say, however, that he has manometry equipment already on order at the hosp where he works (waiting on delivery now) and will be learning how to use it...he just does not want someone as young or complicated as Nicholas to be his guinea pig, and I understand that. But, it looks promising that we will only have to make the trip to KC once and after that, our own GI can take care of the rest! Hmmm.....let's see..... I guess that is about it except for the talk of his vacation and of how happy he is that Nicholas has kept up his good spirits and personality even after all he has been through. This said as Nicholas is running through his office hallways flirting with all his nurses! Overall, it was a very nice and pleasent visit. I am so looking forward to taking in the new baby for him to see next time and making sure the little guy looks reflux free! Fingers crossed....

I made it through the day no worse for the wear, so I am thrilled about that. Things went well for everyone. We wanted to eat lunch at this restaurant called Cheesy Jane's that we were introduced to on another trip there where we met friends for lunch, but Nicholas was not interested in their fab burgers and shakes once he saw Chuck E. Cheese at the other end of the strip center. He dragged us past the door, pointing and saying Ohm, Ohm (mouse, mouse) and crying as he strained to go there. We decided since he had been so good at his appt, we would bite it and eat there. Pizza, tokens, and games it was! At the end, he redeemed 15 tickets for a roll of smarties and ate them all on the way home before napping for 1/2 the trip back.

He also ate his way through about 2/3 of his first personal kiddie sized bowl of ice cream tonight. Usually he just has sorbet since the ice cream is so rich and heavy and he can still be intolerant to milk at times. Tonight he wanted strawberry ice cream and was able to be coaxed to eat most of it himself! Now, we sit and wait to see what, if anything, it does to his system. Big news for him just to have eaten it though!

That is about it for today. I am beat and ready for bed. Hope all are well! Take care and God bless!


Melody

Thursday, February 17, 2005 9:35 PM CST

Weight gain has stabilized (no water weight this week), swelling not quite as bad as last week, bp down slightly, and protein the same. She was glad to see things staying calm. She rx me cough meds so I can sleep at night and not feel as though I have to hold my belly for fear it will split/ache every time I cough now. I get to stop taking the ctx med and the aspirin at 36 wks and I asked her about any restrictions after that and she was ok with me being off ALL restrictins after that. We were so disappointed about not being able to attend the rodeo this year, so I jokingly (kind of) told her I wanted to go to the rodeo and "walk the baby right out" and she laughed and said that was fine with her as long as it was not the night of the 16th as she had tix and did not want to hear her name paged at the concert! She also said if I were to go there and pg her, she WAS going to finish her $7 beer regardless and the baby could wait! I love her! She is such a ham! She also said that I need to take it easy the week after I go off the ctx med as depending on which of her colleagues were on call that day, they may or may not try to stop labor. Really, it is only one doc in the practice who is SO super-conservative, that this would be a problem. She is also on call over Easter weekend, so it looks like we have it made. Only 3 more weeks......

Nicholas has been on a tear today and has been the past 3 days. I am afraid it is because of my hospitalization. Ugh! I just hope it passes soon. Tomorow is our big appt in San Antonio. I am not sure when we will be getting back to post an update, so no promises. If not tomorrow, then for sure Saturday.

Take care,everybody and God bless!


Melody

Wednesday, February 16, 2005 10:33 PM CST

Not much change since yesterday. I sweated out an almost 102 deg fever all night and am feeling slightly better today, even though my nose is pouring. At least I feel closer to human anyway. I also think I pulled an ab muscle coughing. Oh, and I also might have broken another toe...I caught it on my pants waistband last night and started falling...caught myself on the bed, but yanked the toe pretty good. I wouldn't have even given it a second thought, but woke up with it throbbing and turning lovely colors. Ugh. I am a huge klutz anyway, but being pg makes me 10 times as bad. I really appreciated my mom coming over and helping out with Nicholas this afternoon after school. He always enjoys seeing her and they had a blast playing basketball outside together. I went out also to watch and enjoyed the fresh air.

Nicholas had OT today and did well, as usual. He is learning his therapist's name, much to her delight. I asked her about all the toe walking he has been doing lately and she related it back to his sensory issues. I was hoping they were gone, but after the cotton candy incident recently, I was pretty sure they were not and she was able to confirm that for us today. Luckily, to treat it, Doug gets to roughhouse with him on the floor, bear hug him, and play pillow fight....something all guys love anyway! So, therapy ought to be fun for them both. Hopefully, the more sensory input he gets from this, the less we will see of the toe walking.

Tomorrow is the next OB appt and Fri is Nicholas' GI appt. I am hoping to make it to San Antonio in one piece and back again, but the hosp bag is going with us....just in case.

Guess that is about all. Hope all is well with everyone. Take care and God bless!


Melody

Tuesday, February 15, 2005 10:10 PM CST

Not a good day right now....Somehow, in addition to the lovely bladder infection I just got, I have come down with a sinus infection including a nasty cough. Every time I cough, my head throbs like it is going to explode and my ab muscles ache from the pg and bladder inf. I am running fever, too, and generally feel terrible. My reflux has been REALLY bad this pg...to the point the prevacid has not been giving me relief and I am waking up choking on reflux in the middle of the night. I have a WHOLE new respect for these poor little babies who deal with this...I honestly feel like I am drowning as I wake and gasp for air. After 2 episodes of this Fri night, I developed this nasty cough, so the infection is either from that, or from lack of sleep and being in the hosp. Or, maybe all 3....who knows. And, the lovliest thing of all is that the abx for the bladder inf and the abx I can take for a sinus inf do not cover the other inf, so I will have to be on 2 now. Ugh! I have added in Zantac also and am finally getting relief and some sleep now. I hope to be feeling much better after I recover a bit.....I just hope Nicholas cooperates. I am thinking of taking my mom up on her offer of coming over and helping. I just feel bad that she has to use a 1/2 vacation day for this.

My sis and the boys came over to play today and she was a big help. Nicholas had a good time with them, so it was a good day. He is doing well and gaining a little on the new amt of overnight feeds. He is also staying well (knock wood), so we are hanging in there in that respect.

Ok...I feel BAD, so I am ending for the night. Take care and God bless!


Melody

Monday, February 14, 2005 9:55 PM CST - HAPPY VALENTINE'S DAY!

Well, I guess last night makes hospital stay #3 for me. UGH! Seems I somehow got a bladder infection which sent the contractions haywire last night. Apparently, any infection while you are in preterm labor can do that. Who knew? We did not find out until they ran testing today to see what was going on. Even the extra pill I can take did not do it last night and we were sent in at about 3. The ctx were every 4 min when I got there and ended up at every 7 min once I was settled in. We got lucky and I was able to avoid the magnesium sulfate, as they reserve that nasty stuff for ctx less than 5 min apart. Luckily, they found the problem, sent me home, and I can take abx to help get over this. And, the best news is that when the OB on call checked me, I was unchanged from the 1 cm and 30% effaced that I was when I first went into the preterm labor.

This unexpected stay also threw quite a wrench in the plans for Fri's GI appt as Doug did not get his 10 hr day in today like planned. We are hoping he can make up time next week for it. He did go in after my dad got back from the dentist and he was able to drop Nicholas with him and he came and got me at about 2 when I was d/c. He also stayed late. His boss did not seem upset or mad at all, so that is a pleasant change from the previous job.

Guess that is about all. We are all beat and need to go to bed early. We are running on just a precious 1-2 hrs sleep from last night and are about to drop. Take care and God bless!


Melody

Sunday, February 13, 2005 9:17 PM CST - HAPPY BIRTHDAY, ROBIN AND CONNOR!

Today is a day of birthdays in our families!

We slept in late today, ate cinnamon biscuits, and lazed around for a bit. Doug has been working on taxes on and off all day and we ran out for a couple of errands with resting in between. We tried to find a cross for the baby at the craft show today, but the people who sold us Nicholas' cross were not there. We did, however, find Nicholas some cool pillowcases....the one he is using now has a big, red firetruck on it and says Fire Chief...and we also got some for gifts for later on. We also had to stop and get him a pillow for it too and found one with an allergenic cover. He was so excited to sleep with it and then ended up sleeping NEXT to it with his head touching it. I am not quite sure he "gets" what a pillow is for yet. Hopefully with some time....

We also had dinner made by a friend tonight. It was SO GOOD! Homemade lasagna, buscuits, salad (with organic lettuce no less!), corn, and peanut butter chocolate cake. And the conversation and company were not half bad either! OMGoodness, I had to drag my stuffed full belly out of there!

Nicholas' nighttime routine has gotten quite elaborate since I have been on bedrest. But, it sure is nice snuggle time. We have to play Cabacake (pat-a-cake) twice, sing Row, row, row your boat (woah, woah, woah...boat......STREAM mewiy, mewiy, mewiy.........DREAM! according to Nicholas!) twice, say prayers, sing You are my sunshine twice and then hugs and kisses. It is long and drawn out, but I treasure my snuggle time with him!

Doug's day is starting WAY early tomorrow...his new boss told him if he worked 4 10 hr days this week, then Fri when we have to go to San Antonio for Nicholas' GI appt will not count as a vacation day since he made up the hours during the rest of the week. I am so glad he has a boss willing to work with him...we sure NEED those vacation days when the baby comes! Doug sure is loving it there and has already sold his first project....not even there 2 wks, so I am sure hoping he is proving his worth already.

Guess I better go as we need to hit the hay early tonight. Take care and God bless!


Melody

Saturday, February 12, 2005 9:45 PM CST - HAPPY BIRTHDAY, BETTY!

What a day! We woke this morning after an especially bad night of sleeping on my part (darn reflux!) and got ready for Nicholas' lesson. After a scolding from the lady who does his lessons for me being out there, I rested while Doug and Nicholas went for a ride. We ordered these cool jackets there too.....denim jackets with the HALTER logo embroidered on the back. We got Nicholas' in a sz 5 so he can grow into it and use it for several years. Doug and I got one too...Happy Valentine's day to us!

We went to a birthday party for our nephew today. Nicholas was excited to see his cousins and play with them. They even pigged out on red Elmo cake....until the birthday boy was overwhelmed by it and needed a good cleaning! He was a lucky guy today...made out like a bandit, with the help of his brother and cousin, of course! Nicholas found a Baby Einstein turtle toy that he developed a particular liking (or ahould I say addiction!) to and we had a time getting it away from him.....it was MINE, MINE the whole time. We managed to hide it when he was not looking so we could leave without it becoming a major issue.

Tomorrow should be a lot more quiet than today and we can hopefuly get back to a more normal routine...including a NAP! Hope everyone is well! Take care and God bless!


Melody

Friday, February 11, 2005 10:05 PM CST

Slow day again today! Nicholas and I laid low and relaxed today. Had a leisurely lunch, watched some shows on TV, napped, and played some as well. Doug got home and the meat was a frozen solid slab still, even from thawing since last night, so we used the rest of a Chili's gift card and went out and had a yummy dinner there!

The upcoming weekend will be a very busy one as we have riding lessons and our nephew's 1st bday party tomorrow and a dinner a friend is making on Sunday night for taking her to the airport over the holidays. Also, the Heart of Katy craft show is going on as well this weekend and someone needs to get in there and pick up a cross for the new baby from this one craftsman. She carries the most beautiful crosses and we have several bought from her....one in each of about 4 or 5 rooms in out house. Now, the new baby needs one. We also may be looking for a kid sized pillow for Nicholas to see if he is ready for one in his crib.

That is about all for now. Hope everyone is well. Please sign the guestbook if you never have or have not in a while so we can keep up with who still checks in. Nicholas loves hearing notes from those who leave the messages....I love that they leave smiles on his face! Take care and God bless!


Melody

Thursday, February 10, 2005 9:54 PM CST

Well, I have to say this was one of the best appts I have had in a while! My bp was the same (no better, but no worse either) and same for the protein level. I am measuring 35 wks now and I feel like my belly is growing exponentially every week! She did not check me today as the fear of stirring things up too frequently is still there, but the meds increase has been working REALLY well. I have had to take only 2 extra pills since the change and the ctx have not been more than about 4/hr except for a few times. We are hoping that means no change. I am allowed to stop the meds at 36 wks (which should be exactly 4 wks from today) and and then allow whatever happens to happen. She would also like to avoid a c-section if possible, so if the baby has not been born by the time I hit 38 wks, she will induce on the 29th or 30th to make sure he does not get too big for me to deliver naturally. So...WOOHOO!!! I have an actual date and there is an END in sight!! An actual date I can mark on the calendar and I can even count down the days until then!!! WOOHOO!!! I am so thrilled I cannot even tell you! Before I felt like this would never end since the end was so questionable as to when it would happen, ut now that I have a date, it seems way more achieveable somehow! I know that might sound weird, but it is really reassuring to me to know this has a definitive end now. The baby sounds great. She is unsure if I will need another u/s before the birth or not, but will start checking the baby's position at around 36 wks to make sure he is staying head down. Judging by where I feel the hiccups coming from, I am relatively sure he is head down....Nicholas' were the same way. I am getting really close to uncharted territory as I did not make it past 35 wks with Nicholas, so unless something comes up suddenly, it looks like I may actually make it past that! WOOHOO! Just thought I would share my good news!

My sister and nephews came today. It was a usual visit...nice and (mostly) quiet. Nichols sue loves it when his cousins come to visit and I enjoy having some adult interaction for a change....it sure breaks up the monotony of our days lately. Plus, there is always the bonus of having take-out food for lunch!

That is our news for the day! Take care and God bless!


Melody

Wednesday, February 9, 2005 9:17 PM CST

Not much new news today. We are waiting on a call back from the GI to discuss some other things with him and see what his thoughts are on some of them. We will post when we have some info to share.

Nicholas has been such a little sweetie today, coming up to the both of us and giving us all sorts of kisses and loves. I am really enjoying this special treatment! He also had a good eating day, so we were very happy about that as well! Hope it helps him pack on the pounds really quickly!

Doug and I are still hanging in there....what else is there to do? Doug is getting very busy at work and he is really enjoying the new job thoroughly so far. Hope he continues to love it this much!

Tomorrow is my weekly OB appt, so we will update afterwards. The new dosage of meds seems to be doing the trick very well, so I am happy and I am sure the dr will be pleased as well!

Take care and God bless!


Melody

Tuesday, February 8, 2005 9:39 PM CST

Nicholas sure has been a stinker today. I am sure waking 1.5 hrs early this morning and waking an hour early from his nap probably has a LOT to do with it! The rain keeping him from playing outside yet AGAIN this week has not helped either. He is so far down by 2.5 hrs of sleep today and was a very crabby, cranky, whiny boy all day today. He is now in bed and I am praying for more sleep tomorrow. As long as he does not sleep in or nap well, I don't either and right now, I feel dead on my feet.

The GI's office called to help us make Nicholas' appt as the GI did not see him on the schedule and wanted to make sure we were coming in. We are having to go to the other office this time and we are on their records for this appt and not on the main office's. He just wanted to make sure we got something and appointed a nice woman to make sure we had something, work in or not. Have I mentioned before what a great doc he is and how much we LOVE him?

Nicholas started the longer overnight feeds last night and woke up not wanting anything to do with breakfast. He was still full from the extra hours of formula. Before this, it was hit or miss with eating breakfast, but most mornings he would at least eat something, if only a few bites. Today, he was not even interested. I am hoping for these increased feeds to be a temporary thing.

Doug and I are still hanging in there and hoping for March to hurry up and come. After that, the baby will come when he comes. We can make it, but it seems like such a LONG time from now.

Guess that is about all for now. We are hoping that Nicholas' sleeping issues are short-lived and he will be back to normal tomorrow. Fingers crossed! Take care and God bless!


Melody

Monday, February 7, 2005 10:40 PM CST

Sad news for Nicholas....he has not had any net weight gain in months and the GI is concerned. He is thin enough now you can see his ribs and hip bones sticking out, so he is now bumped up on overnight feeds by 2 hrs for an indefinite period of time. He has been growing taller, which is a good thing, but without putting on weight at the same time, he is falling farther and farther off his growth curve. He has lost his fat reserve, which he needs in the case of a bad illness that could result in weight loss he cannot afford to lose right now. We go to San Antonio Fri the 18th for a check up and to see how he is doing at putting some weight back on.

Other than that small setback, things were quiet and wet today. No basketbll today, but when things dry out, we will be ready!!

That is about all. Take care and God bless!!


Melody

Sunday, February 6, 2005 10:25 PM CST

Phew! What a day! Started out by sleeping in until almost 10, ate a yummy breakfast, went outside and put up Nicholas' new bb goal, and baked some cookies and brownies for the party. He LOVES the goal! I am so thrilled as he should be able to enjoy his outside time even more now....I just hope the weather cooperates and allows us to spend some more time outdoors without worrying about inclement weather!

After playing a bit, we came in, dressed, and left for this store that sells beanbag chairs and is going out of business. We wanted to be sure to get the baby one like Nicholas' before they were closed for good. We love Nicholas' denim covered one and have not seen any like that at other places. We lucked out and were able to get a lighter colored denim one for the baby and were in and out in a matter of minutes.

Once back home, we ate a quick light lunch and Nicholas laid down for a nap while we (mostly Doug) tidied up, did a bit of laundry, and bathed. We finished up just as Nicholas was waking and our first guests arrived.

The party was fun, we ate a TON, and had a great time laughing at commercials and just visiting. Now, we (Doug mostly again!) are cleaning up a bit and getting ready to hit the hay as we are TIRED!

Hope all are well. Take care and God bless!


Melody

Saturday, February 5, 2005 11:21 PM CST

I so love the weekends as it is a change from the unchanging routine from the weekdays. It is always nice to shake things up a bit! Doug took Nicholas to his riding lesson this morning. Nicholas, as usual, had a good time and really enjoyed himself. Unfortunately, he has also been dumping again and yesterday morning, had a diaper blowout so bad, his pj's were soaked and his sheets needed to be changed. Doug was greeted with an unwelcome surprise this morning at 4 am when he went to disconnect Nicholas from his overnight feed...the smell of another blowout. So, in addition to unhooking him, he also had the pleasant task of changing Nicholas' diaper and clothing, and remaking his crib again. Just before going to the lesson this morning, he had another one which required another wardrobe change and another this afternoon which resulted in the 3rd outfit for the day. My poor baby. This morning, I could literally hear the yucky stuff churning and gurgling in his poor stomach. His eating has been off too. In the mean time, we are dilluting feeds and increasing the amts so he does not lose any more calories than he has to.

Doug's mom came by today, brought lunch, helped him out around the house, and started dinner for us (which by the way was YUMMY!). It was such a welcome help to us, particularly to Doug, as he works so hard and still has to come home to a seemingly endless list of work to do here. They got the outdoor decorations taken down (I know...it is about time!), laundry done and folded, bathroom and kitchen clean. The house looks so good! I am very happy with the results! I feel so bad having to sit here and not be able to help, but it makes me feel good to know we have people who care about us and want to help.

Tonight, we went to run a couple of errands and came back with the car packed full! We got Nicholas a basketball goal to use out on the patio. It is a grow-with-me model and adjusts from 3 ft all the way up to 6 ft. so it should be a long term investment for him (and his brother). It is his gift for Valentine's Day and he might get lucky and get it a week early. It is more than we would normally get, but after all he has given up to stay homebound with me and how sweet, accomodating, and well-behaved he has been the past several weeks, he deserves something really neat. I know he will enjoy using it for our morning outdoor time now that the weather is clearing up. He has missed that the past week due to rain and mud. We also found a really cool gift that "the big man" might bring Nicholas for Christmas next year. It was on sale for over 1/2 off and something we have wanted to get him for some time, so it was too good of an offer to turn down. Now, we just have to figure out where we are going to put the huge box it came in!

Doug finally got the Turbotax working, so he is hard at work figuring out how much Uncle Sam owes US this year! He has been busy all day and things are looking good!

Tomorrow we are having some friends over for a small Superbowl Party here. I am looking forward to it. Time for bed, so I will tell you all about it tomorrow. Take care and God bless!


Melody

Friday, February 4, 2005 11:55 PM CST

Today was quite the whirlwind! My sister came over with my nephews and then a friend dropped by with her son. Needless to say, the living room was barely intact after the kiddos were all done dragging out toys. By the time our friend left, both our boys were dropping from sheer exhaustion and her son was energetically running laps in the front yard. It was easy to tell our boys were nap takers and hers was not!

Nicholas has been holding his own with the fever. It was lower today, but he also had friends to play today, so we will see how he fares over the next few days. So far, so good. We also put Nicholas back on his appetite stimulant today as he was finished with the 3 day break to hopefully improve/increase it's effectiveness once again. He ate better today than the last 3 days. Fingers crossed he is eating like a little piglet soon!

I am suffering from some sort of stomach trouble today. In addition to my reflux flaring up worse than it ever has in my life, I am also having nausea and this general yucky feeling in my stomach. I think Nicholas ate/drank more than I did today....and that is saying a lot! I am hoping to feel better really soon! Maybe I will be lucky and it is a transient side effect from the increase in meds for my ctx, which by the way were WAY better today than they have been all week. The dosage increase is working well!

Doug had his first quote due today and managed to finish it. He has had quite a productive first week at work and is really liking it!

I am tired and not feeling the best, so I will end this now so I can crawl into bed and crash. Hope all are well and healthy. Take care and God bless!


Melody

Thursday, February 3, 2005 11:22 PM CST

Well, my OB seems to like the adjusted due date from my 18 wk u/s, so that would put me at about 31 wks, which is what the u/s last week was measuring the baby at. My belly is measuring 33 cm, so a bit big, but was the same way with Nicholas. I gained more than I should have due to water retention (very visible in my face, neck, and hands) and my bp is higher than it has been so far this pg. Luckily, the protein in the urine has remained unchanged, so she is keeping a close eye on the numbers as I am getting very close to the limits for preeclampsia. She checked me and I have not dilated any further, TG, even though I hit an all time record for ctx yesterday of 74 (at most 10 ctx in an hr and an avg of 5/hr through the day). Needless to say she was NOT happy with that and adjusted my meds to every 4 hrs instead of 6. So far it seems to be working out. If things continue to progress as they have, she is looking at admitting me for a round of magnesium sulfate. Blech! I hope not! We asked her if there was an oral form of mag and she said there was but they do NOT use it as it is a laxative almost exactly like milk of mag. Just a little FYI.... The baby is moving well, very active, sounds good, and is strong. That was the plus of the day!

Nicholas had OT today and had a good time playing with the therapist. She is a fun and really nice lady and he likes her a lot.

We also got to meet Nicholas' godmother and her dad (who is in town on business) for dinner. It was a nice visit.

Guess that is all for us. Take care and God bless!


Melody

Wednesday, February 2, 2005 10:32 PM CST

Another quiet day. A friend came over and brought Melody and Nicholas lunch. After they had a nice meal together, they had a good visit as well. She is also pregnant and will be finding out what she is having tomorrow. We are guessing boy.

Melody has been having a lot of contractions today; good thing we are going to the doctor tomorrow. Hopefully she can help us sort this out and get things under control.

Nicholas is running a low grade fever tonight. Hopefully it is nothing, but we are definitley going to be keeping an eye on it. Fingers crossed it's nothing.

Guess that's it for today. Take care and God bless.

Doug

Tuesday, February 1, 2005 9:48 PM CST

Quiet day....Nicholas played, it rained outside, and I sat. The contractions were worse than usual today and there were some other issues to deal with as well, so we did not do much at all.

Doug enjoyed his first full day at work today...spent much if it in a meeting and working on his new projects. He went in early today as he will tomorrow and Thurs to make sure he is making up some time so he can go to my ob appt Thurs afternoon.

We are taking Nicholas off his Periactin until Friday as his eating is not great and his body most likely is too used to the med and needs a break from it for it to work well again. I am hoping it does the trick...what I would not give right now for him to go above 26 lbs for once!

Guess that is about all for now. I am hoping for the rain to go away as it is so gray and depressing outside and it is hard to stay cheerful under the circumstances when the weather looks like it does. Hope everyone is well. Take care and God bless!


Melody

Monday, January 31, 2005 8:59 PM CST

We got Nicholas' ENT follow-up appt moved up to this afternoon so Doug would not have to take time off on Thurs morning after he just started working full days. So, since he was only a half day today, we thought moving it would work well. The ENT was thrilled with his sinus CT scan and said things looked great. He also agreed that my being on bedrest has obviously agreed with Nicholas health wise as he has been well for several weeks now. YAY! He did note that Nicholas' adenoids were moderately enlarged and thought that would be something to keep an eye on. If he continues to have these recurrent sinus issues next fall, we will revisit having them removed.

Nicholas also had his developmental therapy today. His therapist is due about 2 wks after me and is having a girl. He had a great time playing with her and impressed her with the shapes he has learned (square, circle, oval, and sometimes triangle) and his speech as he is talking in several word phrases now. She was thrilled with his progress!

Doug had a successful first day at work and really enjoyed himself. He is moving up in the world as he now has an OFFICE (and a good sized one at that!) instead of a cubicle! And, it is fully ready for him to start on his first 2 projects (which he had been assigned sometime last week) already! Tomorrow starts full days for him and he is very excited!

Take care everyone and God bless!


Melody

Sunday, January 30, 2005 10:22 PM CST

It was a very quiet and laid back day today. We had a huge late breakfast and stuffed ourselves. It was so yummy. We have been having to miss out on church lately as the strain of sitting without my feet up and standing/sitting during the service is thought to be a bit much for me right now. I am missing it terribly, but know that we will be back as soon as this little bundle is here and big enough. I was lucky enough to get out for a bit later on though as we had to run out to Target and I got a ride in the wheelchair they have. It was enough sitting and my feet were up enough to make it so that the contractions were not any worse really than they would be at home. It was lovely to get out and shop and Nicholas enjoyed the ride on my lap and getting to push Mama around (with Doug's help of course!)! We got some groceries, a pair of spring pj's for Nicholas, a maternity jog suit for me, and a fold-out couch with Pooh on it that Nicholas has been dying for for ages! I swore up and down I would never pay $30-40 for a little foam couch for kids....that is just crazy! So, we have held off buying it in the hopes they would go on sale somewhere. After months, we figured it would never happen, but today it was on sale for $20.....still a bit much, but WAY better than the regular price. He got it home and has been sitting on it every since!

Guess that is all the excitement for one day. Tomorrow is Doug's first day...well, half day...so he is excited. And, I am looking forward to having him home for part of the day, too! Take care and God bless!


Melody

Saturday, January 29, 2005 11:34 PM CST

Melody stayed in bed most of the day today so she could go to a birthday party with Nicholas. She was so excited to get out of the house to do something fun. She had a great time watching Nicholas have a blast at the party. She did really well until she tried to help Nicholas at the party, which was at Gymboree. Her contractions increased, so she took another dose of medication, which slowed down the contractions. She couldn't stop talking about how much fun she had. I don't know who had more fun, Melody or Nicholas.

Nicholas went to ride his horse this morning. The land was sopping wet and muddy; there was not a dry spot anywhere. He did a great job riding, and he was able to stay on the full 30 minutes. After we got back home, we all ate lunch. He then went down for a nap. After about 2-1/2 hours, we had to wake him up so we could go to the party. He had such a great time at the party. He couldn't stop running, jumping, dancing, clapping, singing, and playing games with the other children. At one point he had everyone laughing. He was having fun the with Gymboree worker as she was making a clown on a stick named Gymbo disappear. Nicholas would point to Gymbo and she would then make Gymbo disappear. He thought that was just the funniest thing. He was laughing, squealing, and jumping during all of this. Nicholas really had a great time because when we were trying to leave, he threw a fit because he didn't want to. He was so excited to get out and play with friends as he does not get to do that much right now.

I accepted a new job and resigned from my current job late this week. Since I am going to a competitor, my employer said to go ahead and pack my things and leave. I will officially start my new job on Monday. I will only spend part of the morning there and then about half of Tuesday in the office. Wednesday will be my first full day. My new boss seems to be more understanding of Melody's situation and Nicholas' situation. I am excited about going to work there. I already know about three people there that I have worked with before. Another plus is I won't have to get on the freeway anymore!

Well, I guess that is all for today. Take care and God bless!

Doug

Friday, January 28, 2005 10:11 PM CST

It was a quiet and relaxing day today. Nicholas and I did a whole lot of nothing around here and it was SO nice! I did a bit of shopping on eBay and found an adorable piggy bank for the baby. It is made by Royal Doulton and shaped like a book with the slot for coins on the book binding. It is the same one as Nicholas has, only this one has Bunnykins on it and Nicholas' has Pooh. I am so excited that we found one that is like Nicholas' as I just love his! The lady will be shipping it tomorrow, so hopefully it will arrive soon. I am also on the hunt for a baby book for this little one, but I am afraid I am a bit picky and that is causing some problems. I LOVE the page titles of Nicholas' book, but have yet to find another with those pages and a different cover. I wish I could say I have plenty of time to look for it, but I am not so sure that is the case.

Guess that is all the excitement here. I will close for the night so I can go lay down. Take care and God bless!


Melody

Thursday, January 27, 2005 10:35 PM CST

Well, I wish I could say it went well. It was bad from the start...on the drive there there was an accident and we were trapped on the freeway. I swear when we get rain after a long period without it, people forget how to drive in it! Then, things were running behind. Nicholas never complained about being NPO either, which kind of makes me sad. Anyways, they got him all ready in the chair and prepared all his food and drink and then I had to leave. Nicholas lost it and after that, it all went downhill. He refused the food and drink....Doug finally forced him a spoonful of pudding and he gagged SO bad on it. Then, they gave him a graham cracker dipped in the barium and he took tiny bites, but it looked like he actually CHEWED it! That was the good news of the day! Last time he took HUGE bites, mashed it with his tongue, and swallowed it whole. Then they tried again with the baruim drink and he refused again. They gave him his sippy with water instead and then asked for his cup and switched it out when he was not looking (the two cups were the same). Then he drank some more and they got two sips with the barium drink and he gagged bad and that was it and he was screaming ALL DONE! They decided to end it and he was gagging and wanting to rinse the taste out of his mouth. They offered him the sippy with water, but after they had switched it out before, he did not trust them and refused to drink it (and kept refusing it for a good while as he thought it was another trick...poor baby!). They did not find any choking (as, OF COURSE, he did not choke during the test) and they did not see any laryngeal penetration either, but then again, since he only had two swallows and he gagged, they cannot say for sure that it is gone. There was not enough for them to tell. All in all, it was almost a wasted day, but at least we know he is chewing his food. That was the bright spot of the day. She is recommending that we look into feeding therapy for swallowing as he is still choking and that is a concern, as he is getting older and it is not going away. Anyways, not sure now what we are going to do, but for now, we will wait for the test results and talk to the GI and maybe pulmo and see what to do.

Meanwhile, after the stress of the day and the amount of time I was on my feet, I was contracting pretty bad by the time we were on our way home and I ended up taking an extra pill and another 1.5 hrs until things had settled. Thank goodness the extra dose works, or I might be back in the hosp tonight.

Hope everyone is doing well! Take care and God bless!


Melody

Wednesday, January 26, 2005 10:37 PM CST

Sorry for the lack of posting last night, but OMGoodness! I was stuck in the hospital for yet another unexpected overnight last night. I sure hope this is IT until the baby comes! What a night (and day!). Yesterday my sister came over to help out and visit. She did a lot to help out..some loads of laundry and some cleaning in our bedroom. I was so grateful. All the while I was noticing that the baby, who usually does acrobatics ALL day long (to where you can see my belly bouncing from across the room), was being very still. I decided to wait until after I ate lunch and see if that helped as eating usually makes him even more active. It did nothing. So, I called and they told me drink orange juice and count movement for an hour. I got the minimum amount of movements, but they were very weak (not his usual vigerous ones) and very minimal. After reporting back, they were not reassured and decided to send me in for some monitoring. I was ok with that since I was becoming concerned at that point myself. I got my parents to take me and Nicholas up there and dh met us there as his work is still being stupid about him taking time off, and with traffic, I could get there faster without waiting for him to come get me. My parents also took Nicholas home with them for the evening when it was apparent I was not coming home right away. I was hooked up for about 30 min or so when he finally began to perk up a bit and by then they had decided to do another u/s. According to that, the baby us up to a whopping 3 lbs 14 oz (+/- 11 oz) and my cervix looked like it was only minimally dialated, basically looked closed (no obvious change since the last hosp trip), so they were happy with that. I had to wait to eat dinner until after the results came back in, which was almost 10:30...a soggy, cold grilled cheese and fritoes never tasted so good! BUT, while waiting for the u/s results so the dr could let us go and also from the tracings before the u/s. the ctx had picked up to every 2-5 min, so like 12+ every hr for 2 hrs or so, so that of course, was not good news for me as the dr on call was not ok with letting me go home like that. I had to take a 2nd dose of meds again and things seemed to settle finally, but not until after the decision was made to keep me overnight. So, dh finally got back up there with Nicholas to get me and I had to tall him that I could not go. They wanted to be sure my ctx would stay stable overnight and then I could go. He came back this morning and I was in the process of being d/c when he got there. TG my ob was on call this morning...she asked me how soon I wanted out of there and I said is now too soon? She told me I would be the first she would fill out papers on. So, after about 30 min here I am. Hopefully this is the last hosp trip for a while! Now, if only we could find someone the baby will listen to when we tell him to STAY PUT!

Anyways! Today was very low key after I got home. Nicholas napped for 3.5 hrs and I slept for about 2 of those hrs and rested the rest of the time. Tomorow is going to be a much bigger day as Nicholas has his swallow study as Tx Children's and I might have my OB appt. Since I saw my doc this morning, she said I did not have to come in unless I needed to, so I am reserving the right to go if something comes up. Otherwise, I really do not need to be running around that much, so I probably will not go. Today, the contracting has been much better, so it seems like I will not need to go in to see her at this point.

Guess that is about all. I am going to end for tonight as I am SO tired from a mostly sleepless night at the hospital. We will update about tomorrow's appt for Nicholas as soon as we have some info. Take care and God bless!


Melody

Monday, January 24, 2005 9:02 PM CST

We sure are proud of our little guy! This past Sat was the hi-points award banquet for the GCMHA (the horse shows where Nicholas has showed horses through his riding therapy). Apparently, he was quite the showman this season and earned several awards at the banquet this year! He won 2 reserve grand champion hi-points award trophies and one grand champion hi-points award trophy and also this beautiful (and HUGE) belt buckle engraved with GCMHA Hi-points award winner on it. It even has gemstones on it as well.....just amazing! We were so surprised! He sure is going to like it when he gets older and realizes the sentiment and specialness behind it. I am so proud of my little cowboy!

Last night was a rough night for me and almost resulted in a trip to the hosp again. Luckily, I somehow managed (after almost 6 hrs) to get the contractions under control and remain at home. Needless to say I have been taking it VERY easy today to try and prevent this from happening again (although we have no idea why things went so crazy so fast). The OB seemed ok with how things turned out, so I am now waiting on the next appt this Thurs to get some more specific instructions should this happen again. Meanwhile, I am sure hoping things stay quiet and calm until then.

Fortunately, everyone else is doing really well! Nicholas has a swallow study coming up also on Thurs to reevaluate his chewing and swallowing mechanism and see if things have improved at all in the laryngeal penetration he has been having. He is still choking, so I am not convinced it is gone yet....the pulmo is not either, so we will see.

That is about it for now. Take care and God bless!


Melody

Sunday, January 23, 2005 9:32 PM CST

Today has been a relatively uneventful day around here. I guess that is a good thing for the most part! I was able (barely) to get both of my guys the haircuts they were in such desparate need of. They were both looking very scruffy and overgrown and it was so obvious to me every time I looked at them! They are both looking SO much better now and Nicholas barely cried during his, so he is able to tolerate them SO much better now than he has at any point before. And, we did not even have to bribe him with a sucker or anything! Major progress!

Everyone remains healthy and well here. That is good news! Doug is getting to be quite the cook these days and he is a champ at tidying as well. Nicholas' eating has been hit or miss.....the usual, and I am snacking like crazy!

The rest of the day was spent playing with Nicholas, working on the computers, taking care of some rebates, and just resting in general. I am missing church terribly, but understand that this is what is best for the baby at this point.

Guess that is about all for now. Hope all are well and weathering the snow and weather well. Take care and God bless!


Melody

Saturday, January 22, 2005 9:52 PM CST

We sure had fun today! Nicholas had his riding lesson this morning he got to take his cousins with him. He was VERY excited about that as was his cousin as he got to ride a horse! Both had a very good time! After lunch, the boys laid down for a nap, except for the baby...he was like the energizer bunny and I think he was so far past sleep, he was going on adrenaline. My parents came over for a bit and got to see all 3 of their grandsons and play with them. That was the highlight of their weekend I am sure! Doug got to see his nephews who he does not see often as when we get together, he is usually at work. After everyone left, Nicholas' godmother came over and got her fill of her godson and playing with him. We had dinner together and she went home to relax after a long week. Nicholas did not nap well and was very tired come evening, so he was ready for bed a little early. Hope he sleeps well tonight.

Guess that is all for today. Hope you all are well and healthy. Take care and God bless!



Melody

Friday, January 21, 2005 11:41 PM CST

Today sure was interesting. Doug was moving from one part of the building to the other and in between moves, missed a phone call to the other desk. It was from the GI and he asked us to page him as soon as we could as he needed to talk to us. We knew something was up, so Doug called him and when he returned the call a few min later, he called me so we could conference call. It turns out the GI has heard of a study being conducted on toddlers with GI problems a lot like Nicholas' at the University of Kansas by a renowned motility specialist our GI has worked with in the past. He feels like Nicholas could benefit from participating in this study and wanted to know if he had our permission to speak to this specialist about Nicholas and his medical history. If he qualifies for the study, we would be looking at a trip to Kansas City to have some very specialized testing (called Antroduodenal Manometry testing) done. There are only a handful of places in the US that have the machines to do this test, so it is highly specialized and would tell us a lot about Nicholas' stomach and intestines and whether or not they are working as they should. It will also look at specific meds and if the help and how his body reacts to them. This will help establish if Nicholas would be a candidate for a med they are looking at trialing again here in the US (was a med used here before but discontinued in the US for several reasons not applicable to children on it). I am not sure what to think as this is all very sudden and took us both by surprise. We know the GI would not have suggested it if he did not truely thnk it would help Nicholas out. And, I know we would do ANYTHING in a heartbeat if we thought it would help out our precious child. It might be expensive though and Doug taking time off from work is not the best timing right now, especially with me on bedrest. All I know is I am trying not to think about it too much until we speak with the specialist next week and see what he has to say and whether or not Nicholas would even fit the criteria for the study. Then, I guess we will have some hard choices to make. I hope the OB will let me go if the trip is a go. I guess we will cross that bridge when we come to it. That is really all the news for the day today. Please think of us this weekend and early next week while we wait for the call and make some decisions. We will update as we have something to post.

Take care and God bless!


Melody

Thursday, January 20, 2005 8:11 PM CST

My OB appt today went well. Still protein, but not any more than usual. My bp actually looked better then usual today, so that was a plus. Gained 1 lb in the last 3 wks and have gained about 24 total I guess. I am happy with that though, as I have been snacking like a Hoover vacuum the past week or so and thought it was going to be way more than that, esp since I am so sedentary these days. She was ok with the amount of contracting I am doing, but decided to wait another week or two to check me as she is wary of checking too often and introducing bacteria and also stimulating things to kick in more than they already are. She wants me to start coming every week now to keep closer tabs on me and I will more than likely start non-stress tests soon as well. They were trying to chase me down with the glucose drink, but my dr finally convinced the lab people I did not need the test ....TG! I got my nice RhoGam butt shot today and did not have to do the blood draw as they tested last week in the hosp. I got out of there with only 1 out of 3 sticks I was supposed to get....another plus. The final u/s results from last week came in and things looked great. The baby is head down already and the placenta looked good and is high enough to not cause problems. The umbilical cord looked good as well. The baby was right on track for development and gestational age and looked to be about 2 lbs already. I measured 29 cm today, but close enough since I am almost 28 wks. So, things will just continue as they are until the baby comes. Hopefully not too soon. Guess that is about it for me.

Nicholas is MUCH better today. He did not even make it until 8:30 for bed last night. The bath was the last straw and he could not take ANY more, so Doug medicated him, skipped the toothbrushing, and put him straight to bed. He did not even make it until his poor little head hit the mattress. He was up bright and EARLY this morning, about 8:10, being his usual bright and chipper self. I am really relieved as I was worried if he was still acting like yesterday, I would have to take him in. I think, after weighing him last night (after forgetting in the morning), that I know what happened. He was weighed at the imaging place on their scale with an overnights diaper on and loaded and also fully clothed (slippers included) and weighed in at 28.5 lbs. I told her that was way too much and he weighed 25 lbs 11.5 oz last week buck nekkid, so she rounded down from 12.7 k to 12 k even to dose the sedative. When we weighed him yesterday, he was 25 lbs 6 oz (11.5 k) and had lost since last week and I think he was oversedated. I am hoping that is also why he had the breathing problem as it would explain why that just came up out of nowhere and also why he had such trouble coming out of it. I think we are going to be weighing him ourselves at home from now on before ANY procedure with sedative to be sure this NEVER happens again. Wish we had done it yesterday. Ugh! Luckily, this time, he seems to have slept it off finally without any lasting effects.

Nicholas also had OT today and did very well. The OT was jokingly asking if she should save us a spot for the new baby. I told her yes, just in case. I think she will and that will be nice as we really like her. She joked with me that we must REALLY like all of them since we are not trying to get rid of them very easily.

That is about it for us I guess. What a long couple of days! I am looking forward to a nice quiet day tomorrow! Take care and God bless!


Melody

Wednesday, January 19, 2005 10:20 PM CST

Nicholas had his sinus CT scan this morning at 8:30. We were told to keep him up as late as possible last night and be there at 7:30, so we shaved hours for him off both ends of the night. He was jacked up from sleep deprivation when we got there and were told to give him his breathing treatments 1 hr before the scan, so we did it when we got there. He fought the IV terribly to the point where they had to roll him up in a sheet and hold him down, which only made him more mad. Then, once he was sedated, his O2 sats dropped and he was choking on his own phlegm. Who knows where it came from as that has NEVER happened before and he was not stuffy or congested before we began. They started him on O2 and it took a few min for him to choke and cough until he moved whatever was causing the blockage. At that point he was fighting the sedative pretty well and that was also a concern as he was already on the table for the scan. They very nearly put off the scan and had to give him a nebulizer breathing treatment. The nurse told us later that he gave her a scare.....not very reassuring to hear. She said she assumed it was a flare up from his Reactive Airway Disease (which we have never really seen rear its ugly head like this ever before). Afterwards he had a very hard time waking from the sedative and once we got him home, he screamed, choked, and retched for basically 2 hrs until he wore himself out from sheer exhaustion. Slept for 2 hrs and picked right up with the crying and fussiness when he woke and has been that way ever since. Barely drinking and ate a handful of cereal before dinner, which he actually ate a semi decent amount. He cannot walk yet, and still wobbles like a drunk, even when sitting. I am so hoping that this is gone by tomorrow. He has NEVER had effects of the meds like this EVER before and it has me a bit worried.

As for the results, the radiologist came in and looked at the scan before we left and told us his adenoids are moderately enlarged, but not so huge he thinks they need to be removed at this time, and his sinuses looked crystal clear. That does not help us do anything to keep him well, but it at least lets us know we are completely clearing the inf with abx each time, so that is reassuring.

Guess that is about it....it has been a LONG day. We are heading to bed early tonight. Dark-thirty came VERY early this morning! Tomorrow is my OB appt, so I will let you know tomorrow how that goes. Take care and God bless!


Melody

Tuesday, January 18, 2005 10:58 PM CST

Today a good friend came over, brought food, and helped out SO much by cleaning up the living room and kitchen for me. I am not the easiest person to accept help, but I knew she wanted to and Doug needed the help as he is doing so much around here and barely having a min to himself after coming home from work. The house looks nice and smells even better and I feel a lot better seeing what I do from where I am stuck sitting. Before it was discouraging to sit there stuck and seeing everything that needed to be done and knowing I could not do it. I also do not know how to tell her thank you enough for everything she did. The house looks great and the dinner was delicious!

Nicholas and I are settling into a routine now and things seem to be going well so far. I am glad. I hope they continue to go this well. I may just be able to keep my sanity of this is the way it goes. Tomorrow is Nicholas' CT scan. It will be an EARLY morning for us and hopefully things will go well and give us some good information to help us understand why he has been so sick and what we can do to help him. We are not sure if we will have results right away or not, but we should know something by his follow-up appt with the ENT on Feb 3.

Take care and God bless! We are hitting the hay soon as we have to get up at dark-thirty!


Melody

Monday, January 17, 2005 11:24 PM CST - Happy MLK Day.....

Today was one of the nicest days I have had in a while. My parents, sister, and 2 nephews came over. We played, had lunch, visited, and just enjoyed each other's company. It was such good medicine for me as well. Nicholas sure enjoyed playing with his cousin and he showed how much he has missed being with my sister and parents. After they left, Nicholas' godmother came over for a visit and brought me and Nicholas a really nice care package. We sure enjoyed seeing and spending time with everyone today!

Nicholas and Doug are recovering really well from their respective bugs and Nicholas is eating like a champ again, thank goodness! Doug is getting to be quite the cook these days as well.....not that he has any choice really!

I am doing better with the contractions today than I was yesterday. I am glad for that. I think it is going to be a slow road of learning what I can and cannot do to find my limitations. We have been making some adjustments and changes the past few days to make life easier and keep Nicholas more occupied and settled. I am looking forward to getting a routine established and seeing how things go.

Nicholas has a CT scan of his sinuses coming up on Wed morning and I have an OB appt on Thurs afternoon, so we have a semi-eventful week this week. At least we will not be sitting home ALL week. I just hope I can make it to Nicholas' scan without too many problems.

Thanks to all who have been thinking of us the past few weeks, and days especially. We sure appreciate the thoughts! Take care and God bless!


Melody

Sunday, January 16, 2005 11:54 PM CST

Welcome home, Gary!

We are adjusting to life here with me being housebound and limited. Doug took Nicholas to horse riding yesterday and to run an errand. Today, he took him to the store. At least Nicholas can get out and enjoy being outside the house for a bit.

Yesterday, my parents came over and helped us take down the Christmas decorations, which have been pushed to the side for illness, dr appts, and hospitalization since the holidays. I could sit on the couch and pack ornaments while they brought them to me. At least I could help a bit. Today, we separated toys of Nicholas' into 2 toy shelves with bins and moved some into our bedroom so he has a play space in both places. We also have his videos/dvd's/kids cd's set up in both places as well so he has entertainment in each place. This should help keep Nicholas busy and occupied during the days ahead.

I have been stuck in bed or a chair recording my contractions every day and drinking what seems like gallons of water while I have to watch Doug do all the work. It is hard and I feel really bad, but I know it is for the best. I know he does too, but it is still hard on everyone. Maybe once we settle into things, it will get easier and better.

It is late and time for bed. Take care and God bless!


Melody

Friday, January 14, 2005 10:01 PM CST

It has been a few days since I have posted! I am feeling ok and the first full day of rest here went off better than I thought. Nicholas is sure enjoying me being at home again and he has been my little shadow. I am enjoying it as I missed him so much. He will bring me books and climb up next to me on the couch or bed and we will snuggle and read together. He has been mostly good about listening and staying out of trouble. I am sure we will be tweaking our routine to make sure we can get it to where we can minimize the contracting with me, but it was a good start.

Doug was back to work for a full day today trying to wade through the mound of paperwork left from being out sick. He is dillegently playing catch up. He is also feeling much better.

Nicholas is finally seeming to be back to normal. His eating today was great and I think the sores are finally gone. I am so happy for him and he seems to be no worse for the wear and his eating seems really yto be unaffected by it. We could not have asked for a better turnout from a bad situation.

Hope all are well and healthy. Take care and God bless!


Melody

Thursday, January 13, 2005 11:46 PM CST

Melody is FINALLY home! Sprung from the hosp at about lunchtime. She is so happy I cannot even tell you, but what nightmare to get out of there! The nurse got a hold of her ob and she told the nurse Melody was free to go. She went over the d/c paperwork with the nurse and was getting dressed to leave when she saw the comment "Discharged without dr consent"...ok, she was SO not leaving this hosp without a dr telling us she can go. Then I was all suspicious as the nurse, when she saw how upset she was this morning, told her she did not have to have dr permission to leave, that she could just go. Now she is not stupid. She will NOT leave without permission. I know if she does and something happens it will all be on our shoulders, and as much as she wanted OUT, we were NOT about to do it that way. So I spent about 1/2 hr on the phone trying to figure out with the ob's office what was going on and whether we had permission to leave. Finally, after having had enough of getting the run around, I decided to take Nicholas and drive the 30 min to their office and demand to see the ob. On my way out the nurse asks where I am going. I told her and she said as long as it does not have a reason behind the colon, it was an actual discharge and not a leaving without permission. We were still not sold and asked to see the charge nurse, thinking we can also rectify the situation where a nurse had made an ugly comment earlier. When the charge nurse came in we must have looked like we were about to go into shock....guess who it was? The nasty nurse who said that mean comment to her. Melody and I exchanged looks over her shoulder. UGH! So, we asked about the d/c paperwork and she explained it was a glitch in the new software and they could not figure out how to get rid of it and that there was no reason listed there and also nothing noted in her actual file there at the hosp. We also explained we were very unsure as to her limitations as her ob last night, the on call ob this morning and the d/c paperwork all said different things. I told her what her ob had said and she said that Melody sure did not need to hear what she had to say to her this morning and she was sure it did not help, or something like that. I figured it was her roundabout way of admitting she was wrong and apologizing and let it go. After that, she bent over backwards to help us and do whatever she could and even sent Melody home with her next dose of meds since I HAD to get back to work (I had told them 10 anticipating an early release and did not get in until 1) and couldn't really deal with waiting at the pharm for long and she also ordered us up 2 lunch trays for us to eat before we left and ice cream for Nicholas. We knew she was sucking up, but it also helped us out a lot to getting me back to work faster, so we figured she had earned enough points to let it go.

Melody also talked on the phone with her ob after she got home and now have a detailed listing of what she can and cannot do, so that makes us feel 100% better. She has an appt set up for next week to assess how well the meds are working. She has an emergency plan in place so we know exactly what to do if she begin contracting like she was the other night and it looks like hosp is a last resort there, TG. On her own, she is keeping a contraction log to see if there are any patterns to it, check the regularity, and know what activities she may need to eliminate if there are triggers we notice happening. I suspect what she is now on is Modified Bedrest, but her ob is referring to it as Voluntary Restriction of Activity. At least she is not banned to the bed all day. She can sit with her feet up as long as she is not contracting much and she can do some things, so it seems like she is going to be ok without a huge amount of interruption of our everyday life....or at least with all the modifications she had been doing before all this came up. I am glad for that for Nicholas' sake. And we are sure she is starting off like this so she still has more we can do if things are not stabilizng as she would like them to. We LOVE her ob. She is so wonderful.

Oh, and BTW, we keep forgetting to post about this, but she is 1 cm dilated and 30% effaced. We don't know if there was change from before the contractions as they never check this early, so who knows.

I am feeling a whole lot better today. I went back to work to find myself swamped. The test results from my doctor came back normal, so the doc said it must have been something viral.

Nicholas continues to get better every day. Now that Melody is back home we hope things will continue to improve.

Uncle Gary, we hope you are feeling much better and are out of the hospital soon!

It's late and been a long day, so I'll end for the night. Take care and God bless!


Doug

Wednesday, January 12, 2005 10:28 PM CST

HAPPY BELATED BIRTHDAY UNCLE GARY!

Sorry we have not updated the past few nights...things have been very hectic the past few days. Monday, Doug came home from work early with a 102 temp. and went to the doctor to be diagnosed with an unknown virus. After leaving several blood and urine samples, we are still waiting on results.

On top of all of that, Nicholas is still recovering from his illness last week. Yesterday was his first normal day eating again where he did not have to be tube fed baby food. It seems the mouth sores are almost gone. Amazingly, he gained 1 oz during the past week. Guess the baby food worked and kept his weight up. We are very relieved about that.

Last night is when all the excitement started. The new baby was wondering if he should make his appearance this early or not. Melody started contracting every 4-6 minutes. After almost 2 hours of this and doing all the right things to stop them, we admitted defeat and called the OB who then told us to go immediately to the hospital. She was admitted, given meds to stop the contractions, given steroids to speed up the development of the baby's lungs, started on IV antibiotics and tested for Group B Strep, and ordered her to bed. Today she had two ultrasounds, one of the baby and another of her kidneys. We will update as soon as we have the final results. The contractions have not stopped, but they are intermittent for the most part and only get regular again when she is due for her next dose of meds. The meds are giving her a hard time as they make her heart race up to 126 bpm and leave her completely out of breath. She is most likely going to be on these meds for the long haul unless they are no longer effective, and then she will be readmitted for IV magnesium-sulfate. So far the good news is she does not have Group B Strep and was able to go off the IV tonight. She is able to be discharged in the morning and it does not look like she will be going on bed rest just yet. She will have to take it easy though and slow down a lot. She also will not be taking her glucose tolerance test as the steroid injections for the baby and the contraction medication will more than likely cause her to fail. Since we can not get accurate results, there is really no need to take the test.

Guess that is about all the news for now. Hope all are well. Take care and God bless!


Doug

Sunday, January 9, 2005 8:52 PM CST

Great news! Nicholas has the desire to eat still and has had a few cheerios, some popcorn, and a few m&ms. Even though he told us it was an OW to eat, he still is trying and we are not only thrilled about this, but also happy and proud of our little trooper! We are still tubing babyfood through his tube and giving him most of his liquids through the tube as well, but we are making progress and I could not be happier! Hopefully, with this progress and healing, we may be able to go back to oral feeds within a few days.

Nicholas is sleeping better at night, too, finally. This is helping improve his attitude and disposition and he also is looking better as well. The improved sleep is agreeing with him immensely! It is alsonice not to have to deal with the constant crabbiness and crankiness. Now, it is just when he is tired or overdoing it.

We got out today and ran a few errands and Nicholas seemed to be, for the most part, happy to be out and about again. We did not go to church for fear of a secondary infection (as he is still getting over this bug and not strong enough yet to overcome a battle with a new bug while his syetem has been depressed do much). We did run to a few stores and hit some great sales. A few deals later and we were at home with Nicholas sleeping and us busy around the house.

Guess that is about all. Thank you eeryone who has been praying/thinking about Nicholas. He is doing so much better and I am expecting him to improve even more over the next few days. Hope all are well. Take care and God bless!


Melody

Saturday, January 8, 2005 11:22 PM CST

Well, I am happy to report that Nicholas actually felt a bit better today. We took him to his riding lesson, figuring it was short and outside and he really enjoyed the fresh air and riding again after about a month. We ran a few errands at the mall as well this afternoon. He seemed to enjoy getting out and seeing something different besides the living room. We are still tube feeding babyfood during the day, but his desire to eat is still strong, and for dinner, he actually ate some corn and brisket by mouth. We are so glad to see him making some progress with the sores and still feeling the need to eat orally. It seems like the worst has been averted and he will not have as bad of a setback as we originally thought. Thank God for that!

I got to go out with friends tonight for a girl's night (much needed after the week I have had!) and Doug got to spend some much anticipated "guy time" with Nicholas. We all had a good time this evening, although I missed my baby like crazy!

It is late and time for bed. Take care and God bless!


Melody

Friday, January 7, 2005 10:12 PM CST

We ended up back at the peds today because Nicholas refuses to eat or drink. This started up yesterday along with a nasty wet, chesty sounding, productive cough, which also concerned me. He was not sleeping well either as every time he laid down, his nose would block up and he could not breathe and this totally freaked him out. The mere mention of naptime or bedtime sent him into fits of tears. They finally had gotten the results back from the nasal swab (after 4 stinkin days of this!) yesterday and started him on Omnicef, but I think by then, he had been too long untreated and is now really sick. Today, he ate 3 pieces of cereal for breakfast and come lunchtime, every bite he put into his mouth, he screamed and said OW and pointed into his mouth and then bawled. He had what looked like thrush from the limited amount he would let me see into his mouth.
Meanwhile, the cough was still bad, so I called the nurse line and the ped said he wanted to see him today. Turns out the cough is drainage and his chest still sounds clear, TG, BUT he has 15-20+ ulcers or blisters inside his mouth. The ped's eyes got huge and he did a double take when looking. I asked if it looked bad and he said it looked REALLY BAD in there and said he had never seen anything like it. No wonder the poor kid has not been eating. The only thing we can do is give him a mix of Maalox and Benadryl and hope it helps soothe it. If not, they can compound a mix of that with lidocaine for us. The damage has been done though and his oral aversions have come back full force. He cannot even look at food without crying. I am SO upset with the immuno right now for making him wait so long for abx.
This WILL NOT happen again if I have a say about it. OMGoodness! The damage that this will do in his oral feeding is something we will not know until it clears up and who knows when that will be! And who knows how far we will have been set back! We are having to tube watered down babyfood and formula to keep his weight up since he wants NOTHING in his mouth. He has lost 1/2 lb in a week. All this work.... GONE! And the trauma this poor child has been through is just unacceptable! I am just fuming!

Anyways, it has been a LONG day on the heels of a much LONGER week. I sure hope the meds heal the illness and sores very soon so we can return to "normal" (whatever that is!) soon! Take care, God bless, and please think about Nicholas in the next few days. Thanks everyone!


Melody

Thursday, January 6, 2005 11:10 PM CST

Nicholas was just the picture of misery today. Both he and I spent the day in our jammies and slippers and just vegged out. He spent most of the day watching his videos, whining, crying, and fussing. His nose is getting so badly blocked he is drooling like a teething baby everywhere from all the mouth breathing and swallowing dificulty from irritation and swelling. Thank goodness he was finally rx meds today after they discovered what was ailing him. It is the SAME bacteria he ALWAYS has problems with. I am going to ask in the future that they treat it as though it is that problematic bacteria and medicate him until they find out otherwise. The past week has been pure torture on everyone and, in my opinion, has been barberic and traumatizing to a sick child. I now have a toddler afraid to sleep due to the breathing difficulty he has when laying down and one who is exceptionally cranky and irritable from lack of sleep and losing weight from an irritated throat and a bad case of thrush preventing him from a decent daily oral intake. He also has a raging case of Thrush, which I am sure is partly to plame for his pitiful oral intake today. I was always thinking that the thrush came as a result of the abx during inf, but I now am seeing that it is probably more likely due to his whole immune system being so out of whack that he cannot fight off ANYTHING....right now he has not been on abx, so it could not be from that. He started Omnicef tonight and will start either Duradryl or Extendryl decongestent tomorrow (as the pharm did not have it tonight). We had to practically beg for this for our poor baby. His breathing is just terrible. His cough has worsened as well and it is now a deep productive chesty sounding cough. If it is still that bad tomorrow, I may take him in for a quick listen to make sure it has not gone into his lungs. Beats having to deal with a worsening inf over the weekend!

That is really about it for here other than the scheduling for the upcoming tests. He is having the CT scan for his sinuses on Wed, Jan 19 and his swallow study on Thurs, Jan 27. We will update more on those as the info becomes available. Right now, all I know is that my patience is shot from one small, but exceptionally miserable toddler, so I am going to have to go so I can refuel and prepare for another day of it tomorrow. Take care and God bless!


Melody

Wednesday, January 5, 2005 10:27 PM CST

Last night was a rough night....seems like Nicholas coughed his way through about 1/2 of it and is so tired he can barely stand himself today. I was taking him drinks of juice to help his cough. Poor baby. Well, this appt was not quite as surprising as yesterday's appt. We got in pretty quickly and talked a lot with the ENT about what has been going on (and I LOVE talking to him as he has an English accent and he sounds so neat!). He checked Nicholas out and told us he did not look as bad as he was expecting......I was happy to hear that. He was also surprised at the kind of bacteria Nicholas is having problems with as it is one of the 3 most common bacteria found in the nose anyway and should be able to be fought very easily even without meds if it turns to infection. But, with Nicholas' immune deficiency, he cannot mount enough of a fight to not have this affect him and require abx. For now, he for sure wants Nicholas to have a CT scan done, which will be in 2 wks. Depending on what the scan shows, he talked to us about several options, among them being sinus irrigation and having his adenoids taken out. For some immediate relief, he wants him to start Nasonex to keep the swelling in his nasal passages down and allow him to breathe better. We have a follow up with him in 4 wks to review test results and see how he has been doing on the Nasonex and to make some decisions on where to go from there. I have mixed feelings about this appt as well, since firstly, I have NEVER not been in the room with Nicholas for ANY test or procedure and I will not be allowed in for this scan since I am pg. This just tears my heart out. It also means dh will have to take time from work to go in with him and they are already giving him a hard time about yesterday and today. Also, it may mean more surgery for him and I so HATE to even think about that as he has been through more in his little life of 26 mos than most adults and I so do NOT want to have to put him through ANY more. I hate seeing him suffer being sick this way too, so someting has got to change, but I was hoping for it to not have to be so invasive to resolve the problems. Ugh! It is like being stuck between a rock and a hard place....neither choice is easy. Anyways, that is about all. I will post more as we get results and follow-up appts taken care of.

Nicholas has been having difficulty sleeping lately. I think it is from waking enough times with a blocked nose that he is very frightened of going to sleep and having it happen again. Last night he cried before bed and we had to go to him. Today, he was in pieces at naptime, exhausted as he was, and he would not sleep. He was screaming MAMA in the most desperate voice you have ever heard. I got him out and held him and he was asleep in seconds in my arms. Slept for almost 1.5 hrs, so who knows. Tonight, he was screaming and sobbing within minutes of putting him down and it took both of us to soothe him, but I *think* he is asleep now. Poor baby! We need to talk to the immuno and see what he thinks Nicholas can take for this problem. I cannot have a 2 yr old terrified to sleep. He looks terrible...all ashy gray and pale with dark circles under his sunken eyes.

No word from the GI so no word on the swallow study yet. I will post when we know more specifics on that issue. Hope all are well. Take care and God bless!


Melody

Tuesday, January 4, 2005 10:16 PM CST

It was an early morning here! The traffic was not great, the crazy drivers were ALL out and going the same way we were this morning, and we made it with little time to spare. The appt went pretty well, but needless to say the pulmo was NOT happy to hear how bad Nicholas sounded this morning. Even though it has not gotten into his lungs (TG!), he thinks this is getting to be a bit much, as do we also. He would like for us to take him to the ENT to get his sinuses evaluated. We tried to make the appt for today since we were already there (and pd for parking), thinking surely it would NEVER happen, which it didn't as his surgery day was today, BUT we did somehow score an appt for tomorrow, so we can get him in while he still has an active infection going on. That should be very helpful. He also was not happy to hear how Nicholas is flat-out refusing the thickened liquids now and still choking, so he thought another swallow study would be a good idea. He wants us to call the GI and run it by him for a final ok first though. And, if he is still having the penetration and/or chewing problems he had before to SERIOUSLY consider attending a feeding clinic or at the least OT 2-3x weekly to address this issue. This has been discussed several times with the GI but nothing has ever come out of it mainly because I guess, deep down, all of us (GI included) wanted to believe that Nicholas would just outgrow or overcome all of this and not need the help. He wants to see us back in 6 mos or sooner if thereis no improvement or if there are issues brought up by the swallow study. I have mixed feelings about this appt, but at least we are doing the best we can to address the problems he is having. I will update more after the ENT appt tomorrow......

Nicholas was so bushed after we got home and he helped me make dinner that he passed out in bed for almost 3 hrs. That is a LONG nap for him! Eating is still poor and he seems to be losing his voice, so I hope they can figure out how to treat him really soon!

Tomorrow is going to be a busy morning. I will update when I have more info. Take care and God bless!


Melody

Monday, January 3, 2005 8:30 PM CST

Nicholas DOES have yet ANOTHER sinus infection. He went to the ped today, got the once over, and also a nasal culture. The dr did not want to have to be the bad guy and do it this time, so he told the nurses to do it and they all argued over who should do it as none of them wanted to have to do that to Nicholas. They all love him so much. The bad part is that he has to go unmedicated for the next 4 or so days until they know exactly which bacteria is giving him trouble and then they will rx a med specifically targeted for that particular bug. Until then, I am having to put up with a stuffy, cranky, fussy boy who just wants some relief. I spoke with the immuno about the sinus CT scan and he says it may be in Nicholas' future if these infections continue. Only time will tell for sure, so we will let you know when we find out any more about that.

Today was relatively quiet. Doug returned to work today and that alarm sure came early for both of us this morning! It seems we both survived though. Nicholas and I ran a few short errands besides going to the ped and spent the rest of the day just vegging, playing, and resting/sleeping. I sure hope he is feeling better soon. He sure is the picture of misery right now.

Tomorrow is another early morning as Nicholas has an early pulmonologist appt downtown tomorrow morning, so needless to say we are hitting the hay early again tonight. Hope all are well and enjoying the new yesr. Take care and God bless!


Melody

Sunday, January 2, 2005 9:55 PM CST

Nicholas is officially sick again. He has been fighting off this URI since a couple of days before Christmas. I have not taken him in since then as I really wanted him to try to fight it off himself and not HAVE to be on abx as he does not eat well and we finally had a week of weight gain after 2 of losing just before it. It has definitely gotten bad since yesterday. I am sure he has not been sleeping well at night either.....he has huge purple circles under his eyes and is SO fussy. This morning, he woke up mouth breathing, pointing to his nose and saying yucky, and basically ASKING for his nose to be cleared. It is nasty yellow, so we are back facing yet another sinus infection and another round of abx that will make him not eat and have an upset tummy. This time I am asking the immuno about getting a scan of his sinuses as this is beginning to become rediculous. How many sinus inf can a kid have in a few mos? He has had them every 2-3 wks since Aug! Luckily there is no fever yet with this one, but he was clinging to me all morning and would not even go see Doug at all and he has been fussy ALL day. Needless to say we did not go to church this morning....UGH! Looks like we will be visiting the ped first thing in the morning.

Other than that, we really did NOTHING all day. We ran one errand and grabbed dinner, but the rest of the day was spent quietly playing or sleeping, using the computer, and paying bills. BO-RING!

Doug is returning to work first thing in the morning. We need to be hitting the hay here very soon so he can have a good night's sleep as there is NO more sleeping in for him! Take care and God bless!


Melody

Saturday, January 1, 2005 11:59 PM CST - HAPPY NEW YEAR!!!!!

Today was a laid back day. We watched a pitiful Aggie football game where we got spanked. Oh, well. The band looked great, though. At least we NEVER lose a halftime!

Nicholas is still having breathing troubles. His nose is so full all the time and he even was screaming in his sleep today while napping. I went in and he was sleeping while screaming and as much as I tried to comfort him without waking him, he would not settle. Doug brought in the syringe and suctioned out his nose and within seconds of having his nose cleared out, he was sleeping peacefully again. He was so drowsy all day, so I know he must not be sleeping well at night either. Looks like we may be seeing the ped on Mon for this one after all if this continues.

We went to pick up Nicholas' godmother and another friend at the airport late this afternoon and had dinner afterwards. It was good food and excellent company, so we all had a good time. Nicholas invited his godmother over tomorrow, so we will see if she wants to come over and play.

Hope everyone had a safe and happy New Year last night and that 2005 proves to be happy, healthy, prosperous and blessed for all! HAPPY NEW YEAR EVERYONE!!


Melody

Friday, December 31, 2004 11:16 PM CST - Happy (Almost ) New Year!

This morning certainly did not start off the way I had planned! My sister called and I had to run to get the phone before the answering machine picked up. I ended up stubbing my 2 baby toes so hard, I heard 2 cracks really loud. I have been hobbling around all day and can only fit into one pair of shoes right now....the ones with stretchy sides I wore when pg with Nicholas. I just looked at the poor toes and they are both horribly bruised and it is spreading down onto my foot. I am pretty sure they are broken. I have a knack for breaking toes and have done it often...and I also cannot bend them either. I feel like between this pg and my sheer klutziness, I am falling to pieces! Ugh! It REALLY HURTS! Well, I guess the OB should be happy that I am going to HAVE to be spending more time off my feet now.......but what a way to do it!

On the bright side, Nicholas has only had a clear runny nose today and little to no temp, so we opted to let him have a few more days before running him into the ped. Hopefully he can fight this bug on his own and not need abx or a dr visit.

We spent the day sleeping in, running errands, and spending the early evening with friends and their daughter (who is exactly one mo younger than Nicholas). We had a great dinner, took the kids for ice cream afterwards, and then came back here for some nice playtime and adult conversation. We sure had a good time. After they left and before we put Nicholas to bed, we took him outside to watch the fireworks and he was so impressed! He was "ooooh"ing and "ohhhhh"ing over each one and sometimes commenting "wow" and "prebby" (pretty). He amazes me sometimes!

Now, we are just counting down until we can ring in the New Year and wait until the fireworks die down so we can hit the hay.

Hope everyone has a blessed, safe, healthy, and happy 2005! I know we sure are praying for that here! Take care, have a safe evening, and God bless!


Melody

Thursday, December 30, 2004 10:07 PM CST

Doug and I let Nicholas have an afternoon with his Grandma and Papa so we could have some time to go see a movie. It has been over a year since we have done that! We saw Polar Express and it was fabulous! If you have not seen it yet, go before it is no longer in theaters. I was missing Nicholas terribly, but he had a good time, as did I, and we both needed that break to be with other people for a change.

We also went to my OB appt today as well. Here is the lowdown...... urine had protein, but still at the same levels (good news!), so still watching it..... bp is slowly going up and is getting close to concerning, so that is now on the watch list as well..... swelling is getting a bit worse as well, but nothing even close to what I had with Nicholas yet....... I am now officially having Sciatic nerve problems too, so she told me to "ice my booty and stay off my feet when it gets bad" (and she jokingly told me I could wear "bootyless pants" too, but I think I might pass on that one! It sure would be a sight to see though! )..... and I am also having pelvic floor discomfort, so who knows what that means, but she did mention that since Nicholas was engaged at 29-30 wks and I was already dillating at 31 wks, that we need to watch that too. Oh, and I have a yeast infection in my armpits from the 34+ days I have spent on abx so far for this never-ending sinus inf (which, thankfully, seems to be gone now!), so she rx me some ointment for it.

She is hoping now that the baby stays put for at least as long as Nicholas (35 wks), but thinks that the farthest I can expect to go is 37 wks. Dh asked her how long she thought I would be able to go with this pg and she would not look us in the eye, nor would she answer. I am pretty sure she is not sure, but not wanting to guess either as it is not long enough for her to be satisfied.

On a brighter note, she is not overly concerned with the glucose test next time and thinks that I should not have any problems with it. WOOHOO!! At least I will not have to worry about having everything! Also, the next appt is the Coombs (sp?) test to test for any blood interaction between the baby's blood and mine and she is expecting that to be fine as well. The butt shot, however, I am NOT looking forward to! And, the baby sounds great and is very active and moving a LOT, so that is a good thing. A strong heart and very active is very reassuring, especially if this baby comes early.

We have come to an understanding that my body does not like beng pg and this will more than likely be the last pg for me. The dr does not like how I have been handling the stress of pg and does not think it would be good for me to have any more at this point. I am totally ok with that, as this one is more draining than Nicholas was and my body has not been taking the toll of pg well at all. These 2 kiddos have been a total gift and blessing and I would be more than happy with them alone. We are truly blessed to have been given the chance for the two of them and I would not change a thing we have gone through to get them here. If we do decide we want more kids, we will be looking into adoption, unless the good Lord has other plans! But, we will not be intervening with any more fertility measures in the future.

Nicholas is running a low grade temp again and has a yucky nose, so who knows what is going on. I can say it does sound like we will be paying a visit to the ped tomorrow. Ugh. Oh well. We will have to see about our plans to get together with friends for tomorrow night's festivities.

Guess that is about all for our little clan. Hope you all have a safe time tomorrow and welcome in 2005 with all your hopes and dreams for the upcoming year. I know we will! Take care, be safe, and God bless!


Melody

Wednesday, December 29, 2004 10:18 PM CST

Sorry for not posting last night but we were not home until well after 11 pm and did not actually get all of our nightly things done until almost 1, so needless to say we were WAAAAAAAY too tired to do it then. We took Nicholas in for his first dentist appt due to the bad teeth grinding he has been doing for several mos now and also to make sure all the reflux had not done any acid damage to his teeth. We took him to a ped dentist who was great with him. He got to choose a toothbrush (Elmo of course!) and show the tech how to brush teeth, then he got to brush the snake's teeth. It was a stuffed snake with huge people teeth denture plates sewn into its mouth. There was also a mirror to count and look at the teeth and a huge toothbrush to brush the teeth as well. That was a big hit with Nicholas and he was relatively good for the dentist when allowing him to look into his mouth. Then, before we left, he was able to taste test some flavors of fluoride treatment to see which one he liked and also he got 2 stickers AND a balloon. Not bad for a quick look in the mouth. Oh, and the dentist said that his teeth look GREAT and to keep up what we are doing and come back in 6 mos.

Then we went to Galveston for the rest of the day and saw the aquarium and rainforest at Moody Gardens and also stayed after dark for the festival of lights there. Then it was off to dinner at the Rainforest Cafe and also to ride on their little rafting ride. All in all it was a very fun day!

Today we had early (ugh!) appts for Doug and me at the ENT to have our allergy annuals and to get our immune systems checked for possible problems. This was suggested to us as immune deficiencies sometimes run in families. We just got basic Ig levels tested first to see if there are any problems there before looking into all the other possible testing there could be.

After that we ran by my sister's house as we were on that side of town and had lunch there with her and also my parents. Then it was off to run some errands before coming home and putting a very tired boy to bed for a nap.

Tomorrow is another long day, so I will end for the night. Hope all are well. Take care and God bless!


Melody

Monday, December 27, 2004 10:20 PM CST

Another day of marathon shopping! We hit a few good sales and were able to get some neat things for next year. Once again, we are ALL really tired!

Tomorow Nicholas goes in for his very first dentist appt. He has had issues from the reflux in the past and we do not know how it may or may not have affected his teeth. Also, he has been grinding his teeth terribly lately, so when I mentioned it to the ped, he thought it was about time for him to go in for the first visit to be sure things look ok. We called this morning and got in on a cancellation tomorrow morning. I hope he handles it well. All I want is to NOT have to hold him down for something else. The looks he gives me go right through my heart. Then, we are considering a trip to Moody Gardens to see the aquarium and rain forest and also to watch the festival of lights there as well in the evening. We might even take a trip on the paddleboat. We will have to see if it works out. We are trying to make the most of having Doug at home.

Hope all are well and things are winding down for you before 2005 kicks in. Take care and God bless!


Melody

Sunday, December 26, 2004 10:31 PM CST

Nicholas had his first NBA basketball game today! Doug got some free tickets from work, so we decided to brave it with a 2 yr old. We just returned from seeing the Houston Rockets play the LA Clippers. It was a good game and the Rockets won. The Clippers also scored low enough for us to be able to redeem our ticket stubs tomorrow at McDonald's for free Big Macs. Nicholas also discovered that he does NOT like cotton candy. I think it is an aquired taste as it melts in your mouth and clings to your fingers and makes you all sticky. He did not like that at all and cried when he could not get it off his hands!

We also went to church and it was so empty this morning and then to lunch with my parents afterwards. Then, it was off to the mall for some serious after Christmas shopping and deal making. We picked up some really nice things and especially some more kid friendly ornaments and decorations so Nicholas will have plenty of things he CAN touch!

All in all it was a long day and it is late so I will end for now. Doug is off until the 3rd, so we will be busy in the upcoming few days!

Hope everyone had a blessed Christmas! Take care and God bless!


Melody

Saturday, December 25, 2004 9:41 PM CST - MERRY CHRISTMAS!

We woke up to a white Christmas here! It is gone now, but we had enough to make a tiny snowman, take some pics, and enjoy it for a few minutes this morning.

We woke and opened our Santa and stocking presents after checking the cookies we left for Santa to be sure they were gone! They were! Nicholas enjoyed what Santa brought him. Then it was outside for some snow time and after that, a yummy breakfast of a sweet roll pull apart. Then, we leisurely opened our family gifts and the big gift from Santa last. Nicholas especially loved his new talking Elmo and the electronic keyboard he asked Santa to bring. Those were the hit of the day. Of the clothes he got from us, he loved his new Wrangler jeans and shirt the best. I guess he knows that they are for his horse shows in the spring!

We cooked some green bean casserole and loaded up the car for a trip to Baytown to see the rest of the family and have a feast there and open more gifts. Nicholas got a really cool driving toy that Doug is currently trying to assemble and also 2 Baby Einstein shows that he is dying to see. We had a good visit and were able to return in enough time to have a nice dinner with my parents.

There is a small and extremely tired boy in his crib sleeping right now as this Christmas has really exhausted him! I know 2 parents who are almost as tired and have plans to join him sleeping very soon as well! I hope everyone has had as wonderful a day as we have and we look forward to seeing some names from today in the guestbook. Please sign and let us know you have been here! Take care, God bless, and remember the reason for the season!


Melody

Friday, December 24, 2004 9:52 PM CST - It's Christmas Eve!

Not too much longer until Santa comes! The story (Night before Christmas) was read and cookies and juice were left out and one tired and excited little boy is in bed seeing visions of sugar plums, I hope.

We got our wish! It is snowing outside and has been since around 4 pm as we were leaving the Children's service at church...which by the way was lovely and Nicholas and his cousins were both so good during it. After we left, it almost looked like a blizzard while we were driving home. Snow was blowing on the street and everything! We arrived at my parents house, ate a delicious meal, and opened gifts. Nicholas liked everything, especially this Baby Einstein toy named Bard who is a dragon and plays music. This is currently in bed with him and Andy right now, so that one was definitely a hit!

Tomorrow is a busy full day of waking and enjoying our family gifts together and then travelling (hopefully the roads will be ok) to Baytown to spend most of the day with Doug's family and back for dinner with my parents so they can see us on Christmas day as well. I hope to update tomorrow night, but if not, then have a very Merry Christmas and I will update the next day!

Take care, God bless, and enjoy the beauty of the snow if you got some, and the peace and holiness of tonight.


Melody

Thursday, December 23, 2004 10:35 PM CST

What wonderful COLD weather we are having today! There is a 40% chance of snow for tomorrow and we might actually get some, which is the closest thing to a white Christmas we have seen in YEARS! I will be loving it if Nicholas gets to see his first snow ever!

Today we went with my sister and her boys to pick up the pics from the mall. We ate, played at the little play area, and did a little bit of shopping. Then, as we were leaving, I found out that Doug was already off work for the day! We got home just after he did and put Nicholas down for a nap and did a LOT of gift wrapping while he slept. I have to admit, Nicholas is doing a very good job at keeping himself from touching the tree and gifts. I think we have put out enough things that he CAN touch that he is satisfied with those things for the most part. Nothing broken (knock wood) and I am so happy with that.

Nicholas is still running low grade fevers, but thankfully nothing more than that so far. At least the ped will be in the office tomorrow, just in case! It is going to be a crazy day with trying to get to Children's Christmas Eve service and celebrating Christmas with my family. We are getting Nicholas up early so he can nap early and be done in enough time to be ready for church. Hopefully the weather will not be bad enought to prevent us from going.

I guess I will end for now so Doug and I can finish up our wrapping (hopefully!) tonight! Hope everyone has a safe day tomorrow and finishes preparations for the big day! Take care and God bless!


Melody

Wednesday, December 22, 2004 9:42 PM CST

It is official....another URI. We had a wonderful trip to the ped this morning, where Nicholas took in a gift of cookies in a tin dfor all to share and a card he signed. He also left with a dx of another URI. No meds as of yet as there is no drainage and the ped was wary of doing a swab and running the risk of possibly introducing new germs in there which might make him sicker....also he was concerned with putting him back on high dose abx within days of finishing the last round. So, we wait and hope this is the worst of it. The immuno is in agreement. He also lost weight, so we are at almost 1/2 a lb lost in just 2 wks. Ugh. Add another 1/2 hr back on overnight.....

We laid low after the appt and a trip to the library as it is COLD outside! We actually have a FIRE going in the fireplace right now! They are saying there is now a 40% chance we might wake to a white Christmas this year! How cool would that be! I am happy with just the colder temps for Christmas, but a white one would totally make my year! Not to mention how fabulous it would be for Nicholas to get to experience his first snow ever! Cross your fingers and maybe we will get lucky......

Hope all are well! Take care and God bless!


Melody

Tuesday, December 21, 2004 6:39 PM CST - HAPPY BIRTHDAY NICHOLAS B!

Today, I had my whole family (mom, dad, sis, and nephews) over for a marathon cookie baking session. I made sugar cookie batter (from scratch no less!) and we made about 50 cookies. Who knew the attention span for a 2 yr old was about 2 seconds? We ended up doing most of the work ourselves. We did some with straight decorations and some with frosting AND decorations. Also, played outside, made lunch, walked the termite guy around for the inspection, visited with my family, and cleaned up toys after the hurricane of 2 2 yr old boys blew through the house. I am having Doug pick up dinner as I am WAAAAAAAAAAAAY to tired to cook tonight.

I have also been dealing with a cranky toddler after everyone left as he is now running a fever AGAIN and we have a ped appt in the morning to see what is wrong now. I am so disappointed as he just finished his high dose abx from the last sinus inf YESTERDAY and went back on the low dose daily abx today. I have NO idea how we are going to keep this child well through the sick season if even abx cannot keep him well. I have a sneaking suspicion that this has something to do with the dumping he just got over as well. Ugh. Such is the story of our lives lately.

It is dinnertime now since the food just arrived, so I will update tomorrow. Take care and God bless!


Melody

Monday, December 20, 2004 10:48 PM CST

Well, I TRIED to get some of the gift wrapping done, but it seems like the gift pile was multiplying as I wrapped! I did manage to get several wrapped, but organizing all the gifts to be wrapped and getting all the necessities together in one place took up at least half of the naptime I had. Oh well......tomorrow is another day!

Nicholas and I laid low today. He is running a low grade fever again today, so I am hoping it is a short lived and easily dealt with bug. His eating is so-so.....not great, but not too bad either, so that is at least better than it was. I think the dumping is officially over, so we are glad it went very quickly this time. I am finally almost over this close to month long sinus infection, so we are hopeful that everyone will be healthy for the holidays.

Take care and God bless each one of you!


Melody

Sunday, December 19, 2004 7:37 PM CST - HAPPY BIRTHDAY GRANDMA!!!

Nicholas had such a good time at church this morning. The weather was beautiful, so the caregivers decided to take the kids outside to play. Nicholas sure enjoyed it! I sure hope it lessened his germ exposure as well. I cannot believe it is so close to Christmas already! Only 6 days after today.......

We had several errands to run today and made the most of them. Had a few last min gifts to buy and an unexpected, but productive stop at Babies R Us as Nicholas saw it and cried to go in. Tirns out we needed diapers anyways and got a few of the utensil sets he loves on sale, so it was good we stopped.

We actually got carolers stopping by our house tonight and that sure was an unecpected and pleasant surprise for us. It sure made it seem more like Christmas after that!

Hope you all are getting into the holiday spirit and you take care and God bless!


Melody

Saturday, December 18, 2004 10:29 PM CST

Wow! What a day! We woke early this morning to take Nicholas' godmother to the airport and then went to visit Doug's parents for his mom's birthday. We had a yummy lunch and played dominoes. Doug gave his parents a quick tutorial in proper golf swing and dented a few balls himself in the process and we went out to dinner at Outback with the whole family. Nicholas has been doing better today and managed to eat more than yesterday, so it is looking like what we are doing is working well. He also enjoyed playing with his cousin as well.

After leaving there and battling a bit of traffic, we headed to a Christmas party thrown by the lady who runs the place where Nicholas does his riding. It was so much fun and she made Nicholas a special ornament as a gift for him to hang on the tree. It was so thoughtful of her! As we were leaving there, we discovered that a house in the next neighborhood was burning and blazing and the situation did not look good at all. Sad to see something like that at all, but even worse this close to the holidays. I hope there were no injuries or fatalities.

It is late and I am going to finish up for tonight. Take care and God bless each one of you.


Melody

Friday, December 17, 2004 11:28 PM CST

Today was fun, but not so great at the same time. Nicholas started dumping sugars again today. I could smell it a mile away on my way to his room. Poor baby had a blowout overnight and was crying about his soaked jammies and the smell. I changed him and it was the same stuff from when he was dumping all those mos ago. It just came out of the blue. He has had a mild GI bug, but this one for some reason has flared up his gastroparesis in a HUGE way. He is now back up all the time we have worked so hard for the past few mos to drop off the overnight feed and is on dilluted feeds now as well until he stops. He is also barely eating, so that is another discouraging thing for him and us. I am so not happy (or is the GI) as this is a HUGE setback for him. Oh, well. Another roadbump in the life of a refluxer/tubefeeder.

On a lighter note, Nicholas and I went to visit his godmother's school today and he had such a good time until he was surrounded by big kids and was trapped, so to speak. He was rescued and still had a good rest of the day. After getting home, we both had a nap and are getting ready for a day trip to his grandma and pawpaw's house tomorrow to celebrate his grandma's birthday. We are also dropping his godmother at the airport, so it will be a busy day.

Hope the spirit of the season is upon all of you. Take care and God bless!


Melody

Thursday, December 16, 2004 11:06 PM CST

Today seemed like a whirlwind. My sister decided to come over and return something to the mall, so we spent a good part of the day there, meanwhile the roast lay forgottn at home. Ugh. The boys had gotten into a crying match over something and I went to see what it was all about, thereby forgetting what I was doing in the kitchen and not remembering to turn it on before leaving. By the time the mistake was uncovered, it was 4 hrs later. Bye Bye $10 roast. So, we ended up taking his godmother out to dinner instead and giving her an IOU for the home cooked meal when she returns from the holidays. At least the cake was a smashing success. It was delicious! Not bad at all for a first try! And Nicholas' rendition of Happy Birthday was the icing on the cake! It was so sweet!

The OB appt was not nearly as nice though. There was protein in my urine again for the 3rd straight appt (6 wks straight), so basically we know it is not a fluke. It is not enough to worry the OB yet, but is enough to raise some concern as to what it will do in the future. For now I will be getting it checked every 2 wks and the OB keeping a very close eye on the level. The OB said she was ok with it staying as is (as it has been consistant each time), but if it goes up we will have to see what needs to be done. Hopefully, this is as bad as it gets and we have no worries from there.

Guess that is the news of the day for us. Hope all are well and getting all the holiday preparations taken care of! Take care and God bless!


Melody

Wednesday, December 15, 2004 9:59 PM CST

Nicholas had such a good time with his OT today, even though she was not feeling really well after a bad allergic reaction to a med she was taking. He gave her a loaf of fresh baked pumpkin bread with a bow on top and a Christmas card with a photo of him in it. She just loved it! Said it was really what she needed! They had fun playing and then after she left, we drove the other loaf of bread to his other therapist at the place where they work as we missed her on Mon (we thought she was coming Wed and were not prepared with her gift). Needless to say Nicholas was throughly impressed with all the big kids and the hustle and bustle of the Junior High where their office is based.

He ate a yogurt lunch and is working so hard with spoon feeding himself, frustrating as it is for him. He is finally getting the hang of scooping. After lunch it was down for a very short under an hour nap. Ugh! I hate phones sometimes! At least he was able to help me with dinner earlier than usual, although the rest of the afternoon was very trying for him since he was so tired. We made Golden Glow pork chops with peaches, served it over rice and had a side of green beans with pepper and bacon on the side. YUMMY!

Tomorrow is a big cooking day for us as we try making our first roast for his godmother's early birthday celebration. We are also trying out our cake baking skills as well. Yellow cake with homemade cherry spread in between the layers, chocolate frosting, and maraschino cherry halves decorating the top. Wish us luck! Quite adventurous, but hopefully tasty as well.

I hear that the cake is almost ready so I better run. Take care and God bless!


Melody

Tuesday, December 14, 2004 9:59 PM CST

Well, Nicholas by far, had a much more fun morning than I did. He got to go play at his Grampy's house while I sat in the drs office waiting room for a follow up to make sure I am really going to survive this never ending sinus infection. It looks like I will live, so that is a good thing and Nicholas had a blast with his Grampy and even ate really well for him at lunch! After playing hard again after lunch, we came home and Nicholas crashed for a nap.

By the time he woke up, he was running a fever and now I am thinking the 2 loose stools he had earlier today was not from the laxative finally working after all. Ugh! Sounds like he has the same thing his cousin has. It just never ends for him. And, he is not even done with his abx for the latest sinus infection yet! So, now we sit and keep an eye on it and if the temp hits the magic number, we will be back to the ped to see what is going on. At least we got our Christmas cards done!

Guess that is the burning news here! It is getting to be bedtime, so I will catch you all tomorrow with the latest! Take care and God bless!


Melody

Monday, December 13, 2004 9:01 PM CST

Well, Nicholas sure was on a tear today! He pulled the tablecloth down off the table and broke some things on it. Not long after that, he tore down the curtains in the dining room.....lietrally pulled them out of the wall. That earned him time out. After he got out, I asked him to find something to do so I could play with him, but when he supposedly went to get a book, he instead knocked over some pieces of my handpainted nativity. So, it was back again to time out. And, this was all before his therapist came prior to lunch!

After eating, he took a 2.5 hr nap and then helped me make dinner in the crock pot again after waking up. He then proceeded to whine and fuss the rest of the day until he went to bed. Needless to say it has been a long, LONG day!

That is about all for today. Hope you all had a much better day! Take care and God bless!


Melody

Sunday, December 12, 2004 8:50 PM CST - HAPPY BIRTHDAY KATIE!

Nicholas got to play with his cousin in the nursery at church this morning. It was a special treat for him as we have only been able to attend sporadically lately due to illness and they have as well due to other things, so it was nice for them to spend the time together for a change.

Afterwards, we grabbed lunch and then headed on over to the birthday party for his little friend. The party was held at Gymboree and all the kids, especially Nicholas, had a BLAST! They had fun activities for the kids to do and it was all very structured and went smoothly. After playtime was cake and drinks and then presents. Before we knew it, it was time to go! Nicholas was so jacked up on sugar and adrenaline, that he never took a nap. He did have quiet time for about an hour, but that was about it. He is now im bed and sleeping,which is where I should be headed myself soon. Take care and God bless!


Melody

Saturday, December 11, 2004 9:01 PM CST

Breakfast with Santa was SO much fun! We got there and Nicholas' Nana and Grampy had already arrived and secured us a place in the Santa line.....#5 (out of at least 40)! Then, we found a spot to sit and enjoyed a breakfast of kolaches, mini quiches, mini donuts, bananas, and mini muffins with water, coffee or hot chocolate to drink. They had snowman and reindeer costumed people who were walking around and visiting with the kids. Finally, it was time for activities and Santa! Our number was called and we waited our turn. Nicholas became very apprehensive and did not want to see the big man (actually crying and screaming) when it was our turn, but he was brave and went with me holding him. The Santa was so good with him and eased him into talking to him, touching his glove, giving him 5, then touching his beard and soft coat, and by then, Nicholas was feeling comfortable enough to get down in front of him and stand by his knee and turn for a pic. Then, Santa asked for a hug and to our surprise, Nicholas gave him one and the Santa saw his chance and after hugging him, picked him up and plopped him on his knee. Nicholas was totally fine with it (to our great shock!) and posed long enough for a pic before needing to get down. What a great Santa experience....knowing that this Santa was nice and patient enough to spent 10 min on a reluctant 2 yr old when there were long lines and make sure he was able to feel at ease before he left. You know the mall Santas would not have spent the time of day. After that, we spent the rest of the morning making crafts like a foam gingerbread ornament decorated with glitter paint, a red and white bead and pipe cleaner candy cane, and a foam Christmas cut out necklace. He also colored a picture.

After leaving, we went to his riding lesson, then out to lunch and to see his riding lesson teacher, a quick stop to pick up a gift, and then home for a nap and to work on the Christmas cards and bills.

Tomorrow is a fun birthday party and church, so we had better call it a night. Hope all of you are well. Take care and God bless!


Melody

Friday, December 10, 2004 10:30 PM CST

Today was fun and spent with family and friends. We met my sister and her 2 kids at the mall to do some pics of all the boys together and also for her older son's second birthday shots and her younger son's baptism pics. They turned out so adorable we had a hard time choosing between all the possibilities. After a long morning there, it was off to the food court for some munchies and then to battle a toy store's going out of business purchasing line.

We got home in enough time to put the boys down for a nap and visit with Doug for a min while he ate and got ready for a dr appt. Then, once he got back, my sister left and we celebrated an early Christmas with Nicholas' godmother, ate a yummy dinner, and went to this Walk Through Bethlehem, a walking tour this local church put on. I stepped back and fell 2 feet down into a mud hole. Long and embarassing story, but I was not hurt and the only casualty were my fav black cowboy boots. At least they are wipeable.

It is late and I am ready for an early night as we are going to have breakfast with Santa tomorrow! I will let you know all about it tomorrow! Take care and God bless!


Melody

Thursday, December 9, 2004 5:58 PM CST

What a long day! We went shopping with 2 friends and one of their kids and then to lunch afterwards. It was an experience to say the least! After that, we had a not so good experience with a store trying to buy one more Christmas gift. Let's just say that I will not be going back there anytime soon!

And, now it looks as though the meat we had thawed for dinner does not look good at all, so we will most likely be going out for dinner tonight.

I am going to go to bed soon and hope that we wake up to a much better day tomorrow! Take care and God bless!


Melody

Wednesday, December 8, 2004 8:57 PM CST

Sorry about the lack of an update last night, but the website was down for maintenance, so I could not get in to update.

Yesterday was fun. Library, then lunch with a friend and her son, a good nap, and then back to this friend's house to play with her son.

Today, we went to the library again, came home for lunch and a great nap, and then back over to the same place to play and bake cookies with this friend and her son, and another friend and her daughter. Nicholas has had so much fun playing with his little friends again lately. It has been too long since he has had the chance to play with them all like this. He LOVED it. and I so love seeing him happy and enjoying his little friends again.

We had such a yummy dinner tonight. Nicholas had fun helping me make homemade hamburger veggie soup with noodles earlier today in the crock pot. He got to add all the ingredients after I measured it out and then stir it up. All day long, we checked on it, smelled the yummy aroma, and stirred it up. He was dying to eat it by the time dinner came around. He ate ALL his firsts (even the hamburger that he usually refuses to eat) and asked for MORE! I am so thrilled that he enjoyed cooking and eating his own dinner, so I am thinking of making one recipe a week in the crock pot out of this yummy cokbook and letting Nicholas help me. This would be such a great way to help him develop a good relationship with food and hopefully, help him broaden his food horizons and try new things.

Hope everyone is well. Take care and God bless!


Melody

Monday, December 6, 2004 6:01 PM CST

Well, it seems as though Nicholas has a sinus infection after all. I would have NEVER guessed it since he has been on abx for the past 2 wks or so, but I would have guessed it was something viral. I knew he was still sick with something, but never guessed it was another sinus infection. Turns out the bacteria he has is a very common bacteria in the nose and the 3rd most common sinus infection causing one there is. And, it is one of the few bacterial strains that can be overcome without abx. Unfortunately, in Nicholas' case, there is such a huge concentration of the bacteria and with his deficiency and going on 7 days of symptoms, there was basically no way he could fight that off on his own. So, he is on a high dose abx for now and will change back to the daily low dose when he is finished with the other. And, then, it is back to toughing it out until we see whether or not this will be something he will outgrow or not.

As for me, I am back on abx for my sinus infection as I had a relapse over the weekend and the urine culture from the OB came back with nothing, so they have no idea why the wbc counts were so high or why there was protein in it. They are going to treat it as a fluke this time and keep a close eye on the protein levels at the next few appts to make sure it is nothing serious or something persistant. So, only time will tell with that as well.

It was a quiet day around here and with both of us not feling well, we decided to hang around, do quiet things, and stay in our jammies and rest. Boring, but not too bad.....and probably sorely needed.

Guess that is about it for today. Take care and God bless! Stop by and sign the guestbook to let us know you have been by if you have not been there in a while. It is nice for us to see those messages and to know there are people out there who care checking up on us!


Melody

Sunday, December 5, 2004 10:12 PM CST

Church was so nice this morning. We have not been able to go and enjoy the service for quite some time, so this was a welcome treat. Nicholas LOVES the nursery there, so it was a wonderful treat for him, too. We will now see how well the shot and abx are protecting him. This should be a great test.

We also lucked out as we were able to find the big gift for Nicholas at the mall after all. Boy were we relieved to see it there! We also made another excellent find. There is a house in the neighborhood on the way to the mall by us. Every year for the past 3 or 4 yrs, we have driven by this one house that puts out a white wire and lights MOOSE in the yard for Christmas. Well, I have ALWAYS wanted to ask them where they got it, but never would be gutsy enough to go and bother them to ask, so I just look longingly at it every time we drive by. Well, I was killing time with Nicholas in Sears earlier while Doug went to buy the gift alone and lo and behold, what did I see in the Christmas section but the......MOOSE! And it was on SALE!!!! So, we are now the proud and excited owners of a brand new white wire and lightd MOOSE in the yard! It is so COOL!

Anyways, that was the highlight of the day, so I will end with that. Hope all are well. Take care and God bless!


Melody

Saturday, December 4, 2004 10:17 PM CST

Today was a busy day with some shopping and some chasing around of a big gift for Nicholas that we were dumb enough to NOT buy when it was right there in front of us this morning (and also when there were a ton of them a week or so ago) and then, only to find out later, it had sold. So, back to square 1. We have a place to check tomorrow and we will see how that goes. We have surely learned our lesson about leaving the big gift to be bought this late in the season, that is for sure!

I am feeling this sinus infection coming back on again and need to get a refil on my abx. So far, there has been some mix up between the dr and the pharmacy and nothing is there for me. Hopefully that will change very soon, though.

Nothing else major here, I guess. Nicholas had therapy as usual this morning and loved it. It was so muddy and sloppy, but at least it is not sweltering heat anymore though! He has a lot of fun though, so it is worth the mess. That is about it so I will end for tonight. Take care and God bless!


Melody

Friday, December 3, 2004 10:44 PM CST

We had so much fun today! We went to visit my sister and nephews and had a little Christmas party with the playgroup there. It was so much fun to let the kiddos play while we visited and then to eat, eat, eat on some really tasty holiday food. It was a huge holiday spread and we all feasted! Then, we had each brought a small unisex gift and each child picked one and it seemed that everyone got a gift chosen specifically for them! Nicholas chose a big Little People Magna Doodle pad with shape stamps. He loves his little travel sized one, so you would have thought he had died and gone to heaven when he saw this big one! He could not put it down once we got home!

Doug took us both out for a treat tonight as I was craving ice cream in a waffle cone and we went to Maggie Moo's, a yummy ice cream parlor here. Nicholas does not particularly care for ice cream, but we did get him to eat 1/2 a dish of Mango flavored sorbet and he was so proud of himself holding his own dish and scooping it out with a tiny taster spoon all by himself! My little boy is growing up so fast! Doug had a chocolate dipped waffle cone with Cake Batter ice cream and I had a plain waffle cone with Choco-Mallo ice cream (tasted like frozen chocolate pudding) with sno caps mixed in. YUMMY YUMMY YUMMY!

Hope all of you have a wonderful Saturday and take care and God bless!


Melody

Thursday, December 2, 2004 8:32 PM CST

We had a good time Christmas shopping today at the mal with my sister and her boys. We have everyone but my grandmother bought for now! I am very excited to have the holidays coming up so fast! My sister made a pretty good dent in her list as well. We also had lunch at Rainforest Cafe and Nicholas and his cousin had a blast!

This afternoon I had my OB appt. It sure was not what I was exepecting at all. I gained 6 lbs (6!!!) in 2 wks. Then, the urine sample was not good. They found a very high wbc count in it as well as high neutrophils and they also found protein. My OB thought it might be a UTI until she learned I have been on an abx for my sinus inf since last Wed that should cover any UTI as well, so this now has her concerned. The concern is mostly the weight gain and the protein since I had such bad preeclampsia before. I KNOW I have swelling in my hands and face and wrists, and she checked my feet and my socks were leaving huge dents in my legs, so I now have swelling there also. This baby will not be ready at all to come our before Christmas so this has us all in a bit of worry right now. At least, thankfully, my bp was still down 122/70, so that factor is not entering the picture yet. She should get the results of the urine test back on Mon, so we will be waiting until then.

Guess that is about all for us today. Hope everyone is well and you take care and God bless!


Melody

Wednesday, December 1, 2004 8:46 PM CST

It is official. Nicholas has another URI, so he is still having problems with the viral infections. Much as the abx can be good for preventing bacterial infections, there is nothing that they will do for any viral bugs. We may end up back to looking into IVIG if things continue as they were before in regards to the viral illnesses. We call the immuno tomorrow to let them know what is going on. We will update when we know more.

Other then that, we had OT today and Nicholas is beginning to assert his powers of NO more and more. He was not wanting to cooperate very well with her, although he did it in the sweetest way possible and with an adorable smile! What a little nut! She had a good sense of humor about it and they both had a really good sesion in spite of it. Then, we had lunch with his Nana today. He sure did have a good time visiting with her!

Guess that is about all. Take care and God bless!


Melody

Tuesday, November 30, 2004 10:15 PM CST

Wow, did it get COLD last night! Today Nicholas discovered his breath can be seen on the cold air. He also learned how to bundle up like Nanook of the north, but he sure looked cute! Like he was about to hit the slopes! We braved the weather to go out to the library for a short while this morning. Then a friend and her son picked up McD's for lunch and brought it over and we played inside for a few hours before crashing for a nap. Nicholas was worn out! Those boys played hard!

No fever that we know of today, but he woke with a runny nose today, so we are atill keeping an eye on it. If he goes either 5 or 7 days with symptoms, we still have to call. Ugh! Hope it is fast and gone soon!

I hope everyone is enjoying the weather where you are. I know it finally feels like wintertime here! Take care and God bless~!


Melody

Monday, November 29, 2004 8:50 PM CST - Happy Birthday, James!

It was a quiet day here today. We hung around the house in jammies and Nicholas has been running a fever of 100 - 100.1 all day, so I am hoping it stays down. 100.5 means a trip to the ped and 100.5 for 48 hrs means a call to the immuno. I hope this will not change the prognosis of the abx, but it may mean that if he is still getting sick even on the abx, they may have no choice but to go to IVIG anyways. Fingers crossed that this is the worst of it. It sure does not help that I have been fighting a sinus infection for almost a week now and Doug has had a touch of a cold or something the past few days. He is feeling better, but this is the first sign of illness in Nicholas so far.

Right now, Nicholas is making cookies with Doug and he just sang a rousing rendition of Happy Birthday to his uncle on the phone. It sure was a funny thing to hear and see. I am still smiling thinking about it.

Guess it is time to go sample some yummy caramel chocolate chunk cookies made by my 2 special guys. Take care and God bless!


Melody

Sunday, November 28, 2004 10:15 PM CST

It sure looks a lot more festive around here after getting the decorations put up! We put up the tree and hung the stockings, decorated the mantle and put up the outside decorations. We even hung the baby's stocking to remind ourselves that he is on his way! Things just somehow feel more "complete" with his stocking up there with the rest of ours. It's beginning to look a lot like Christmas! I cannot believe it is already that time of year again!

Nicholas and I made a few more gift purchases today while out shopping with his godmother. It gave Doug some uninterrupted time at home to finish up some things here.

Guess that is about it for all of us. Hope all of you are getting into the holiday spirit as well. Take care and may God bless each and every one of you!


Melody

Saturday, November 27, 2004 10:13 PM CST

The sales were still going strong today! After Nicholas' riding lesson, we went to have lunch at Burger King and got a very special picture taken with Santa. The lady who does his riding lesson was holding a fundraiser for the horses (it is a non profit org) by taking pics of kids on the back of a horse with her dressed as Santa also in the pic. Nicholas, surprisingly, figured out it was her and was not really unsettled by seeing her dressed that way. He took an adorable pic on the horse and was so excited!

Then, we went to Cavander's western store for some gift shopping. Next, we were off to buy some stocking holders and after that to the Old Navy Outlet and a specific Foley's store to their maternity dept.

While at Cavander's we got a call from Nicholas' godmother asking us if we could come get her at the airport as her ride was unable to come and get her at the time she was expected to arive after her flight was delayed. We said sure and made the trek there and also to a favorite restaurant on that side of town for dinner. This place is cool.......they throw rolls at you if you want one and they have free appetizers they walk around with for customers to munch on while they want for their food. We are usually almost too full to eat the meal when it arrives! YUM! After dropping her off, we are now home for the night. I am pooped!

Hope everyone is well! Take care and God bless!


Melody

Friday, November 26, 2004 9:59 PM CST

I applaud those who braved the crowds to go shopping today! We waited until after dinner when the chaos was dying down to venture out. We stopped 2 places and did not buy many things.

Today was a miserable day for me as I have been sick and then to end the day, the Aggies lost to t.u. Ugh! At least Doug got off early and was able to be home in time for lunch! Nicholas loved that!

Tomorrow we will try to get back to the same old routine and do his riding lesson....if it is not too wet. We will also run a couple of errands across town and then try to put up the Christmas decorations. This year, I am not nearly as worried about the tree as I am about the presents! Now that he can unwrap them, it should be interesting to see if they can sit there untouched or not!

Hope everyone had a great holiday and we hope you will check in with us by signing the guestbook to let us know you were here! Take care and God bless!


Melody

Thursday, November 25, 2004 9:16 PM CST - HAPPY THANKSGIVING EVERYBODY!

Today was so busy, but also so much fun at the same time! It was so wonderful getting to visit with everyone and eating, eating, eating! I am SO STUFFED!

Lunch at the country club with Doug's family was something to experience. The food was phenominal! Not as much holidayish, but very uppercrust. There was an appetizer buffet with pate, 4 kinds of caviar, shrimp cocktail, smoked salmon, field green salad, and an array of fruit that did not leave much to be desired. The main course buffet had slow roast turkey, prime rib at a carving station, 2 kinds of potatoes, carrots/parsnips, broccoli, almond crusted orange roughy fillet (which was to die for!), stuffing, and a huge array of breads and rolls and food sauces. They had a kids buffet which had chicken strips, fries, pasta, broccoli, mini jello molds with fruit, a fruit assortment like the one on the adult appetizer buffet, and cookies. The desert buffet had to be one of the most fabulous things I have seen in a long while! I had to have gained 10 lbs just looking! It had chocolate mousse in edible molded chocolate cups shaped like flowers and chalices, chocolate creme pie, chocolate layer cake, vanilla layer cake, carrot cake, pumpkin pie, pecan pie, berry/peach cobblers served warm with ice cream, and italian creme cake. I swear I wanted a taste of everything!! It was the best meal I have had in a long time! The tables were decorated with holiday themes , the buffets had beautiful ice sculptures, and there was a duo playing violin and flute and a guy doing card tricks and making balloon animals for entertainment. They went ALL OUT! And, it was a good thing we had reservations there as their neighborhood had lost power about an hour before we arrived and did not get restored until about 2 min before we got back from eating. The clubhouse had backup generators. Otherwise, there would not have been much to eat without an oven to cook it in!

After a short visit with them after lunch, we hit the road again to go to my sister's. There we had our first taste of fried tukey and it was SO good! Bil used an Emeril Lagassi recipe for turkey marinade that was yummy and smelled great. There was food everywhere and we ate ourselves silly again. Ugh! I am SO STUFFED!

That is really about it. I am still sick, Nicholas has managed somehow to avoid it thus far, and we are all tired from an early morning and a long day of driving.....and we are all STUFFED SILLY!

Hope you are all well fed and spending the day with people you care most about. Take care and God bless each and every one of us, and thank you God, for all our wonderful blessings!


Melody

Wednesday, November 24, 2004 9:47 PM CST

What a day! Nicholas unexpectedly got to spend the morning with his Nana, Grampy, and DiDi as I got sick overnight and had to spend the morning in the dr office. Turns out my suspicions of a sinus infection were right on the money and I am now on abx for it. Luckily, Nicholas started his abx today as well, so we will see how well he can ward it off without getting it as well. I did not expect a test this soon, but it should be interesting to see what happens.

Tomorrow is going to be a busy day as we are having lunch with Doug's family and then dinner with my family and my sister's in laws. It is going to be a long day of driving and stuffing ourselves silly! Hope you have some wonderful plans to spend the holiday tomorrow also.

Take care and God bless!


Melody

Tuesday, November 23, 2004 7:13 PM CST

We FINALLY heard from the immunologist today and the report was better than I had expected. He said that, although the Ig levels are still not good (basically no change or lower), the response he had to the pneumovac vaccine he had 4 wks ago was favorable for 5 out of the 6 antibodies they tested for. So, long story short, he thinks that Nicholas may be ok to try prophylactic antibiotics for the winter mos and hope that the combination of new protective antibody levels and the daily abx will keep him healthy. If it does not, then we always will have the IVIG to fall back on. I am happy with this decision as we have a safety net in case what we are trying now does not work. And, if the abx do work, then it is not nearly as long term a committment as the IVIG treatment is. We will be retesting levels at regular intervals to monitor things and if things take a dive, we will also be able to fall back on the IVIG. So, for now, things are looking better than they were 4 wks ago. We will be having Nicholas start on the Bactrim antibiotic as soon as they call it in for him.

Today was a quiet day. We stayed at home and hung around in our jammies and watched Nicholas' shows and ate and read books. It was a nice, cozy way to spend the day. We both had a good time. Tomorrow, we will be getting our food contributions for the family Thanksgiving ready and Doug will have the afternoon off, which Nicholas will just love! No telling what else is on the plans for tomorrow, as my grandma might be coming over for a bit in the afternoon. Not sure yet, though, what the final plans might be.

Guess that is all for today. I am feeling a bit sinusy today and wanting to head to bed early tonight. Take care and God bless!


Melody

Monday, November 22, 2004 10:12 PM CST

Sorry about missing last night. It was one of those nights where the time seriously got away from me and everything came up and needed to be dealt with all at once.

Today I took Nicholas to get holiday pics done and we had lunch at the mall. My mom went with us and we managed to get out and back in a short break in all the rain. It is nasty out there! Hope the pics all turn out well. Nicholas gave them a really hard time as he would not smile very easily for them.

We also found out that the test results are in, but due to a huge mix-up/mess up, the results did not get to the immunologist's ofice until around 4:30......when they should have been there before 2. Ugh! Long story and I will not go into it. So, I am hopeful that we will get to talk to the immuno tomorrow. What I am able to gather is that his Ig levels are not any better, and some are lower. IgA was 21 or 23 (not sure I remember) and it is now 17 (normal is 24+). IgG was 337, now 334, and normal is 533+. IgM I believe is holding at 17 and normal is 26+. The rest of the results will be reviewed tomorrow and we should, hoefully, have some more information about possible treatments for him. We will let all of you know how that goes when the decisions have been made.

Guess that is about all. Hope we are still here and not floating away at this time tomorrow! Take care and God bless!


Melody

Saturday, November 20, 2004 8:55 PM CST - Sammy's Birthday Party!

What a tiring day! I have one exhausted little boy sacked out in his crib right now sleeping off a long, exciting and fun day with no nap!

There was no riding lesson today due to heavy rainfall overnight and this morning and the fact that the pasture would be a sloppy messy swamp. So, we first went to visit with my parents, sister, her kids, and my grandma for lunch and a nap before heading out to the birthday party. The party was at Pump It Up, a huge room filled with moomwalks and bounce houses. Now that Nicholas can jump, he adored it! He liked it before, but it takes on a whole new dimension once you can jump by yourself and not rely on others to bounce you or help you jump. He ran around like a little wild man and just LOVED every minute. Then, time for drinks, snacks, and then cake and ice cream, followed by presents! Seemed the birthday girl had a good time and enjoyed her party, so a good time was had by all.

After that, back to my parents house to pick up our things and go out with them to grab a bite to eat for dinner. Then home for a bath and an earlier than usual bedtime. This due to the physical exhaustion of the day, no nap, and going to have a time to wake up tomorrow since his cousin's baptism is at church tomorrow. Hope he wakes up on his own tomorrow early enough and well rested with a sunny disposition! We will see how tomorrow goes as Nicholas will NOT be going to the nursery during the service for health reasons. I am guessing one of us will be missing at least part of the service. Hope all goes well for my sister tomorrow and the baptism is wonderful. I will update more then.

Take care and God bless!


Melody

Friday, November 19, 2004 11:09 PM CST

We sure had a good time at Chuck E Cheese today having lunch with some friends and playing! Then we went back to my sister's house and let the boys nap. When they woke, they decided to make the kitchen into a slip n slide by dumping a cup of juice onto the floor and sliding around on it in socks. Needless to say it was wet, sticky, and MESSY! After a stripping of clothes and a washing of floors, things were mostly back to normal. With these 2 as adventurous as they are, I cannot even BEGIN to imagine life with 4 of them!

Tomorrow is a busy day! Riding lessons first, then visiting with my grandma and parents with my sister and her kids, and then off to another birthday party at Pump it up, a really cool bounce house place. It should be fun.

Take care all and God bless!


Melody

Thursday, November 18, 2004 10:10 PM CST

Today Nicholas and I went to visit my grandma over at my parent's house. He had a great time visiting his "DiDi" today, as well as seeing his grampy, cousins and my sister. The boys played hard and had a good time playing and we also enjoyed a yummy lunch!

This afternoon was very exciting for Nicholas. He found out he is going to be a big brother to a little brother! We had the ultrasound today and my parents, grandma, and Nicholas' godmother got to witness this little miracle with Doug, Nicholas, and me. We are thrilled! I am not sure what Nicholas thought of all the excitement, but I know he loves his baby cousin and has had a baby addiction going on for some time recently and he seems to be very into having a baby here. I guess we will see how he feels when the baby comes home!

Still no testing back, but it is still early yet. Guess that is all! What a day! Take care and God bless!


Melody

Wednesday, November 17, 2004 8:49 PM CST

Nicholas did relatively well today at the peds, especially considering what they did to him while we were there. We got there early and asked to go to the back to be away from all the sick kiddos in the waiting room and also as we had the lab orders from the immunologist and needed to have the blood draw while we were there. He started whimpering and saying NOOOOOOOOOO as soon as he SAW the lab room, but with a little praise and encouragement, managed to only whimper and not even cry through the stick and 4 vials of blood for all the testing. He also left with a coupon for a free Frosty from Wendy's for brave boys and girls. Pretty cool! Then we talked to the nurse about milestones and he was weighed and measured. He is 33 1/4 in tall and about the 20th %ile and weighed in at 25 lbs 14 oz (which he was weighed on the heavy scale and it usually weighs too heavy every time we have used it in the past) and that put him right about the 25 %ile for weight (so I am guessing that is really about 20th %ile for weight really). He is hanging in there as best he can on his growth curves and has actually been pretty consistant since the surgery. Everything checked out and he is developing either at normal levels or at above average levels for milestones. The nurse knows us so well, she was able to check of most of the milestones for us! Guess we are there a lot! WOOHOO! We sure are proud of our little guy! He also was a trooper through his Hep A vaccine shot. He is feeling poorly though this afternoon......he slept for an almost unheard of 3 hrs for a nap and is cranky and feverish from the shot. Hope that goes away soon! I have to say it was one of the best visits I have had with the ped in MONTHS!

Anyways.....now we sit and wait. Hope they come in before Thanksgiving break as that will just lengthen the wait even more! We will let you know as soon as we hear anything.

We also had his OT visit today. He did really well and played with toys and colored with her and was very cooperative with her. He also had a blast at the library. It was a nice day!

Nicholas is very excited that his great-grandma "DiDi" came in town today and we get to see her tomorrow. I will let you know how it goes! Take care and God bless!


Melody

Tuesday, November 16, 2004 11:59 PM CST

What a crazy day! We visited with my sister and her 2 boys and did a little shopping for upcoming gifts. We went to the library, out lunch with some friemds, and then to the mall.

Nicholas is still doing well. Tomorrow we have his 2 yr well check and also the immunology labwork to be done to check his levels and his response to the Pneumovac vaccine he received 3 weeks ago. I will update about the appt and then inform of the immuno testing when the results come in. My grandma is coming tomorrow for a visit, so Nicholas will get to spend some time with his "DiDi".

Guess that is about it. Hope you are all well. Take care and God bless!


Melody

Monday, November 15, 2004 11:00 PM CST

Good news! The peds office called today and said that the stool samples came back looking normal, so at least it was nothing more serious than a virus. It is frustrating to never know exactly what is wrong with him, but it is also a relief to know it is nothing serious either. We call him our little medical conundrum.

Nicholas had his developmental therapy today and did well. He played with a toy from his birthday and colored with her. He seemed to have a good time. Other than that, we had a fairly quiet and uneventful day. Nicholas' appetite has picked up quite a bit and he ate 3 small meals and a snack today, so I am sure hoping we are on the right track to getting off this tube. Hopefully he can keep this pace up.

Guess that is really about it. Hope this finds all of you well and warm! It has been a bit chilly here lately, but is warming up again some. Oh, well! Take care and God bless!


Melody

Sunday, November 14, 2004 9:33 PM CST

Today was a day of rest.....mostly. We slept in, snuggled in bed for a bit, then got up and had cinnamon rolls for breakfast. We had a few errands to run and then we came home for naptime.

Nicholas has been feeling better and his appetite has come back and then some. I am so happy that he is eating and feeling so good. This week is a big week with results coming in from the stool samples and his 2 yr old well check and also the testing being done for the immunologist. We will post and inform everyone of the results as son as they are in.

Guess that is about it....nothing too exciting. Take care, all of you, and God bless!


Melody

Saturday, November 13, 2004 10:02 PM CST

What a great appt on Fri! Nicholas' GI was thrilled that he had his first net weight gain since we have been seeing him in San Antonio. He also is happy with his progress (minus the last bout with a GI bug) and thinks we can try to start weaning him off the nighttime feeds slowly. We do not have to go back for 2-3 mos (unless something comes up and he needs to be seen) and maybe by the summer, we will only have to go every 6 mos for follow ups! We also visited the Alamo and had dinner on the Riverwalk with some good friends of ours from college and their son (who is 8 mos younger then Nicholas and is less than an in smaller and weighs a lb more!).

Today, we had riding lessons and 2 birthday parties....Happy Birthday Francesca and Sarah! The parties were fun and Nicholas barely napped. I hope he sleeps like a rock tonight. At least tomorrow, we have nothing much planned, so he will have plenty of opportunity to nap! Hope he can male up for all he has lost the past 2 days!

I am so tired from all the running around, so I am going to end for tonight.

Still no word on the stool samples and we have the immuno testing coming up on Wed. We will let you know when we hear ANYTHING!

Take care and God bless!


Melody

Thursday, November 11, 2004 11:15 PM CST - HAPPY BIRTHDAY, NICHOLAS!!!!!!!!!!

My baby is not a baby any longer. He is a 2 year old toddler. I am sad, but also happy. He has come so far and I am more proud than I can put into words at what a strong spirit he has and a wonderful personality to match. I never knew it was possible to love someone else so much.

Today was pretty quiet...we had POOPIE this morning, just enough for all the rest of the samples and a tiny bit left over. We took them into the dr and let them spoil Nicholas a bit, then an errand, and back home for a lunch of popcorn (his request...and he ate a LOT!) and a nap. The heater guy came to check the heater and just in time too as it is getting CHILLY outside! Then, off to a fajita dinner at El Jarrito complete with a mariachi band, a huge sombrero, and a billingual birthday song! It was great! Finally, we hit a big sale at Old Navy and headed home for the night. Tomorrow is our regular visit with the GI doc in San Antonio. We will be leaving home really early and getting back really late, so there will be no update tomorrow night. I am looking at the time and I think I had better hit the hay myself as I am getting up so early!

Please leave birthday wishes for Nicholas in the guestbook if you have a chance and take care and God bless!

Happy Birthday, my sweet baby! We love you so much!


Melody

Wednesday, November 10, 2004 10:39 PM CST

What an eventful day. Poor baby slept in until 9:45....guess he was tired. We got up, got medicated, and headed out to the peds office. When there, we got looked over, poked for a blood culture and CBC, and sent hom with 5 vials for stool samples and Nicholas is NOT putting out for that. He is not eating and barely drinking and that does not equal enough output in that dept. We have managed a measly 1.5 out of 5 vials so far. Wish us a blowout tomorrow! I want nothing more than to be done with these so we can send them off to be analyzed and figure out what is wrong.

We had dinner out at Rainforest Cafe with us and Nicholas' godmother. We had a good time and she said a special prayer over him for health and healing. I sure hope for good thngs to come. Dinner was great and Nicholas ate Calamari, some black beans, and carrot shreds. Hopefully this will make for good output for him tomorrow! He liked everything about it except the costumed characters. I think he must have been scared of Chuck E Cheese yesterday and now is terrified of anyone in a furry suit and no human face. Hopefully it is just a phase.

Less than an hour to go and I will officially be the mother of a 2 yr old. I have no idea where the time has gone. One minute he is a sweet little snugglebunny baby and the next he is a grown up intelligent toddler. This is one of those days I wish I could freeze time forever and keep my baby a baby. Please leave birthday wishes for Nicholas in the guestbook if you get a chance as I know he will enjoy that. Thanks for stopping by and we will keep you updated about the labwork (if we can EVER collect enough poopie for it!). Take care and God bless!


Melody

Tuesday, November 9, 2004 9:07 PM CST

A fun day was had by all at Chuck E. Cheese. Nicholas, his cousin, and 2 little friends ate pizza, played games, and had a ton of fun. The mommies had a good time chatting and chasing the little ones around as well!

A damper on the day, though.....Nicholas blew a 101+ deg fever and has had diarrhea all afternoon, so we are going into the ped tomorrow and he is working with the immuno to get this worked out. We talked to the GI today as well to dillute his feeds and are also seeing him on Fri (reg scheduled appt), so he can help if he is not better by then.

Guess we are housebound for the rest of the week and Nicholas will be sick on his birthday.....that really stinks. Ugh! Poor kid!

Hope all of you are doing better! Take care and God bless!


Melody

Monday, November 8, 2004 10:08 PM CST

What a relaxing day today was! We lounged around in our pj's and ate and played and Nicholas slept and overall it was just a good time. They called from the immuno with the lab results from the nasal swab and he had a very common sinus bacteria and the abx he was taking should have wiped it out. He started running a fever today, but it has since gone down, so we will keep an eye on it for the next few days, just in case.

3 more days until my baby is 2! I just cannot believe how fast time has flown by. It seems like just yesterday he was born and I was holding him for the first time and falling head over heels in love with him. Now, he is turning into a moody and tempramantal toddler! Good thing I am so in love with him because he has been trying my patience a lot lately!

Tomorrow we have a small get together with the kiddos in our little playgroup for Nicholas' birthday at Chuck E. Cheese. I think we will have a lot of fun! I will give a full report tomorrow.

Take care and God bless!


Melody

Sunday, November 7, 2004 9:46 PM CST

We had such a fabulous time at the Renaissance Festival! We ate a ton and got to ride an ELEPHANT! It was fun, yet scary as it was so high off the ground, but it was definitely an experience. Nicholas was a lot like me....once you got over the initial shock when you pull away from the platform where you get on and realize just how high you are and get used to the swaying gait of the elephant, it is actually kind of cool. Nicholas took a really fun carousel ride with his daddy and they got to go really FAST! He loved it! We got to see jugglers using flaming torches, some of the most beautiful and also some of the oddest costumes you have ever seen, and heard the sounds of some really excellent music. They had shopping, food, and shows. It was a wonderful afternoon with the most beautiful weather we could have asked for. Nicholas even took a short nap which seemed to recharge him a lot.

That was really the whole day in a nutshell. I am beat again and will end here for the night. Hope all of you are well. Take care and God bless you all!


Melody

Saturday, November 6, 2004 9:42 PM CST - Nicholas' 2nd Birthday Party! WOOHOO!!

Wow! What a party! It was a welcomed change from last year! We had a much smaller party with family (10 adults, 2 toddlers, and 1 baby), whereas last year, we had over 30 bodies crammed into our little house. We snacked on munchies, visited, watched the Aggies game on TV, opened presents, grilled these HUGE 1/2 lb burgers for the adults and hot dogs for the kiddos and had all the trimmings. Then, we sang to Nicholas and ate this yummy and beautiful Baby Einstein cake made my Doug's mom. It looked and tasted FABULOUS! It was about 3 1/2 hrs of pure fun for all of us and a special time for Nicholas spent with the people he loves the most. He made out like a bandit as well! Tomorrow we are thinking about going to the Renaissance Festival as his OT brought us free tickets last week, but for now, we have one tired and napless little guy sleeping off a great party in his crib! Check out the mew pics in the photo album!

He had a great time riding his favorite horse, Beau, this morning and lasted much longer this time. All the beautiful weather made the lesson so much more pleasant and enjoyable. I am SO loving this 70 deg weather we have been having. It is a wonderful replacement for the 90 deg weather we were setting records with last month.

All the cleaning and party prep has me beat, so I am going to end this here. Hope all of you are well. Take care and God bless!


Melody

Friday, November 5, 2004 9:14 PM CST

Big preparations have been underway for Nicholas' Baby Einstein themed family gathering tomorrow. Most of the food is bought and we are trying now to tidy up, wrap gifts, and make the final preparations.

We went to visit my sister today and had a good time browsing at the mall, lunching, and watching the boys go nuts playing in the play area. After a time telling mix-up, we made the mad dash back to her house only to find our phones (both of which are the same) did not make the time change and my watch has a dying battery and we were really an hour off. Oh, well! The boys napped and we tried to reassemble a 4-5 in stack of CD's the boys decided to yank and toss out of their multidisk changer when our backs were turned momentarily.

The dogs went to the groomers today and came home smelling great and looking very handsome and shiny. That should keep them from shedding all over the floor for a short while. And now, we begin the great task of tidying up and preparing for the party tomorrow. Hope things turn out looking well.

Nicholas is feeling great and full of energy the past few days and he is making huge strides with putting 2 words together while talking. It is so wonderful to hear him say "love you, mama".

On that precious note, I will end this for tonight. Take care and God bless!


Melody

Thursday, November 4, 2004 10:32 PM CST

Nicholas had OT today and he had a good time. His therapist worked with him on his pegboard and taking apart and putting together legos. She also gave us tickets to the Renaissance Festival, which we have been wanting to take him to see. We might decide to go this weekend. My sister came over and we ran some errands to prepare for Nicholas' party this weekend. We decided to have a small family party this time to aviod a lot of germs and the like. We had to schedule it kind of last minute as we did not know if and when he would not be sick.

The immuno still had not heard anything about the bacteria culture yet and decided to call about it to see why it has been delayed so long. In the mean time, Nicholas finished his abx today, much to his great joy as this has been the first med he has ever balked at taking.

Not much else except we are really enjoying this GREAT cool, seasonal weather we are FINALLY having after the record breaking heat for the majority of last month. We have actually worn pants almost every day this week and even have worn long sleeves a couple of times as well. It is WONDERFUL!

Take care and God bless!


Melody

Wednesday, November 3, 2004 8:32 PM CST

Nicholas had a blast at the library this morning. He had obviously really missed it the past 2 weeks that we have not been able to go. He was so rejuvenated I think, by being able to be back. He even ran to the lady who does the storytime and hugged her leg. What a sweetie! After that, he put in a request for a quick visit to Nana's school, which is just down the street from the library. So, we went by for a lunch pit stop with her and had a really nice visit. After that was home for a nap.

Still no word from the immuno about the bacteria, so I am assuming they still have not heard or that the abx he is almost finished taking is a good one for whatever he was fighting. He seems to be feeling much better though, so the med is doing it's job either way.

Guess that is about all for today, folks! Thanks for stopping by! Take care all and God bless!


Melody

Tuesday, November 2, 2004 9:39 PM CST

Still no word from the immuno on the bacteria from the culture. There was no storytime today due to the voting and I was not going near any polling place on election day after I already voted!

Instead, this morning, we decided to attend gymnastics class with some friends of ours and their kids. Let me be the first to say I am COMPLETELY AND TOTALLY out of shape! Nicholas was the wild child of the whole class today, which was a first for him and after only a few minutes, it was very obvious that he was muscularly a lot more deficient than the other children there....even those younger than him. He was not able to support much if any weight on his arms when I tried to help him into a handstand and he was not able to do a lot of the skills like bear crwling and forward rolls, even with a lot of assistance. Hanging from the bars and rings were very difficult as well. I think we will stick to horse riding for the time being and maybe in a year or so he will be more physically ready for something as demanding as that.

I am hoping that this election does not drag on and we have a clear winner by tomorrow. I am hoping that is more than wishful thinking, but I guess we will see when tomorrow comes around. For now, we are just peeking in on the returns and trying to occupy our attention doing other things.

Happy Election Day everyone and hope you all exercised your right to vote! take care and God bless!


Melody

Monday, November 1, 2004 9:05 PM CST

Nicholas sure handled the time change like a champ. We kept him up extra late Sat. night and he slept in until 9:30 the next morning (which would have been 10:30). Then, he went to bed at about 10:00 last night and slept in until around 10:00 this morning. He has not been off schedule yet so far. I love overcast days like this and try to catch a few more winks after Doug leaves for work and before Nicholas wakes. I hit the jackpot this morning as I was so beat, I fell asleep at around 10:30 last night and woke only long enough to eat breakfast with Doug, then back asleep until 10! It was a small piece of heaven!

No word from the immuno about the nasal culture they did last Wed in his office, so I am guessing they have not heard back yet. Nicholas HATES the new abx Biaxin, and has been barely eating, so I am wondering if he is having stomach trouble due to the abx. Luckily we are only on it a few more days, unless they need us to change abx and then it might be for longer.

The weather today has been stormy and rainy all day and I am thankful as it is hopefully bringing with it a cold front to relieve us from the 90 deg weather we have been having. I am so ready to retire my shorts and wear pants for a change! We are looking at it to be a more seasonal 60s and 70s this week instead of the record breaking heat we have been having. It seems here in Houston, we have 2 seasons.....Summer and Other. Come on cooler weather! Someone up north please send snow!

Hope this message finds you all well and hope to hear from you soon! Drop us a line in the guestbook if you would like and take care and God bless!


Melody

Sunday, October 31, 2004 9:16 PM CST - HAPPY HALLOWEEN!!!

There sure was one adorable doctor making the trick or treat rounds tonight, if I do say so myself! He sure had a good time going to a few houses on our street and also to 2 other houses of friends. He wore his green DOCTOR IN TRAINING scrubs from the Texas Children's Hospital gift shop and a tie on surgical mask around his neck. Since that was already around the neck, the stethescope was a no-go, but the outfit was too cute! Once I download the pics from the camera tomorrow, I will for sure post a pic of this darling doctor.

He did well with the time change last night, better then me, in fact! He did not wake until 9:30 adjusted time, so it would have been 10:30 otherwise. He took a pretty good nap as well, so we thankfully stayed on track!

Other than that, it was a pretty quiet day.....no church and few errands and a lot of resting on everyone's part. We needed to save our strength for the Halloween festivities tonight!

Hope all are well and take care and God bless! Happy Halloween!


Melody

Saturday, October 30, 2004 10:40 PM CDT

This msg is going to be short as I had typed up a long one about today and it all deleted somehow. And, now it is really late and I am dead tired.

Here is our day in a nutshell:

Woke and ate
Went to ride horses
Got the party goods for Nicholas' bday party
Sat in traffic and also got stuck behind an accident on the way to the in laws house
Were really late and ate in a starving hurry
Visited
Went to the park to feed and watch ducks fight and played on the equipment
Went back and fixed dinner
Ate
Changed into costumes and went to the Halloween festivities
Did a craft and went trunk or treating (going to car trunks in a parking lot to get candy)
Went back and changed back
Loaded up the car and came home

Long day and gotta love the extra hour! We sure need it! Night all....do not forget to reset the clocks! Take care and God bless!


Melody

Friday, October 29, 2004 11:07 PM CDT

My sister left her sick hubby at home and came to hang out with us today. No biggie as all 3 of them have/had the same thing N has and he is no longer contagious after 48 hrs on abx. We visited for a bit, went to lunch and a did some shopping ans walking at the mall, and then back here to let the boys nap and for us to relax. We did some web surfing as they might be buying my nephew his own trike.

Afterwards, we spent a fun evening tonight together up until it was time for Nicholas to get a haircut. Oh, the trauma! He HATES nothing more than a haircut, but as he gets scruffy very quickly these days, he has to get one every 3 wks or so, just like his daddy. Otherwise, it gets too long and thick and it is harder to cut and takes about twice as long. So, we keep the boys shorn pretty regularly around here! Tomorow we head north to see Grandma and PawPaw and do some fun Halloween activities. We also get to see he cousins and his aunt and uncle and also see Grandma and PawPaw's new house. He is looking so forward to seeing the cukoo clock, which is his favorite and also playing the organ and piano. Why buy toys when you have a piano AND an organ?? That is all the boys want to play with while they are there anyways!

Nicholas seems to be finally getting over this bug. I am so happy about that, but he is also into a lot more mischief now that he is feeling better. Oh, well! I will take it!

Thanks for stopping by! Sign the guestbook if you haven't in a while and let us know you have been back! Take care and God bless!


Melody

Thursday, October 28, 2004 11:02 PM CDT

Today wasd a pretty laid back day and we really did a whole lot of nothing. We hung out around the house and played and stayed in our jammies all day. It was fun and relaxing. Nicholas is a bit perkier today than yesterday, so the meds seem to be working already.

The highlight of the day was going out to grab a bite to eat and running a couple of errands. That is really about all!

Hope you had a good day as well, take care and God bless!


Melody

Wednesday, October 27, 2004 9:54 PM CDT

IT WAS FABULOUS!!!!!!!!!!! The first time I have felt taken seriously and REALLY listened to since this whole immuno thing began. And, everything that I have been concerned about, been questioning from the old immuno, and things that I was not sure I agreed with were all brought up and addressed and my fears, concerns and reservations were ALL justified. This new immuno is in a small private practice and has been involved with IDF for years now, so I did not feel like another head of cattle in the herd. He has written and published papers and really knows his stuff. He thinks that Nicholas has likely been misdiagnosed and probably has CVID and will more than likely need IVIG. He thought Nicholas' numbers were terrible, which is what I had always wondered and questioned. He was very concerned with the titer levels and the IgG and IgM levels as well. He wanted to do 1 final test before making a final decision.....the same test the old immuno wated us to wait several more weeks to do. He was able to get the pneumovac vaccine today, which we would have waited another 2.5 weeks to get it at the old clinic and we will have the retest in 3 wks instead of 4 like the old immuno said. This means we will have answers before Thanksgiving instead of not finding out until almost Christmas. The one thing I liked the most about him is that he was concerned enough with the infection rate he has right now instead of waiting until he gets something "life threatening" like the other immuno is waiting for. I have been there
(life threatening) twice with Nicholas and NEVER want to go there again. He thinks it is better to treat early and not wait as it is much harder to try to get the whole system under control the longer it is allowed to go like it is now. If Nicholas does start IVIG, he told us he would be able to start us with a home health co to do it in our home instead of being stuck in an exam room in an infusion clinic for 6-8 hrs per visit with a toddler. This would not be an option at our old clinic.

He decided to do a nasal swab since Nicholas was still feverish and junky when we went and discovered Nicholas has another sinus infection, so he is now on another abx. He also wants to help the ped to treat Nicholas better by giving him a protocol to follow when he is ill. The ped has been frustrated at the lack of help from the other immuno.

I cannot even explain how much better I feel tonight.....like a HUGE burden has been lifted off me. I feel like all my concerns and instincts telling me that something was missing, wrong, or concerning were rightly justified and validated. I mostly just feel like someone is finally REALLY trying to help my son and that is all I want in this world, whatever the treatment may be. I will keep you posted!

Nicholas also had his 6 mo reevaluation with ECI for his therapy and his vocabulary of words he uses without prompting was over 110! I am so proud of him. He still continues to meet eligibility criteria with his OT, so we will continue therapy until his next reeval in May.

Thanks to those of you who said a prayer for Nicholas today! It really worked and we are so blessed to have such wonderful friends and family like all of you! Take care and God bless!


Melody

Tuesday, October 26, 2004 9:35 PM CDT

Tomorrow is the immuno appt where we will get our second opinion. I am not sure what I am hoping to hear.....whether it is to confirm that the other immuno is doing all she can to help him or if it is different ideas for treatment or dx or whatever. I just hope that it is something more than "wait and see" as that just does not seem to be working for him right now. I am just tired of seeing him sick and I am tired of being made to feel overreactive for being concerned about his infection rate as he has not had anything "life threatening". I have been there twice with him and DO NOT want to have to go there again for something to be done and people to take notice. I am also disappointed about where his quality of life has gone as we had fought so hard to make him feel as "normal" as possible, and now we have turned into recluses who have been sick every 2 wks lately and never go out anymore. We never see our friends or go to church anymore, or go to places where a lot of kids are either. It is kind of depressing. Anyways, I sure hope to have some good information to share tomorrow night, be it whatever it may be. please wish us luck and say a quick prayer for knowledge and guidance from the new doc.

Nicholas was much quieter today. He is still running fever and was so junky. I sucked 2 tissuefuls of junk out this morning and within 10 min he was sounding terrible again. His voice is so hoarse, he can hardly cry. He is barely eating and I am thinking we will also be paying a visit to the ped again tomorrow. At least by giving him albuterol treatments today, he has been able to sleep almost normally for the first time in days. We will see what tomorrow brings.

Guess that is about all for now. Hope all are well, take care, and God bless!


Melody

Monday, October 25, 2004 10:54 PM CDT

Well, we had to take Nicholas in to the ped today as his fever is still up over 100 and he had a really yucky nose. I feared another sinus infection, but it is another URI instead and we are on the watch for secondary infection though. The ped wants to wait for 2 more days before testing him and/or looking at abx to treat as he feels as though Nicholas has been through enough lately and does not want to risk making him resistant to any abx by giving them unneccesarily. We also had a long heart to heart about the immuno and I was convinced to try a second opinion appt to see if the new immuno would have any different or better ideas than the current unsuccessful "wait and see" approach. Hiis 2nd opinion is scheduled for Wed morning, so I should have a lot to report that evening. Meanwhile, I am stuck at home with a tired, cranky, not feeling well rebel toddler bent on breaking the rules!

Nicholas certainly had an adventure today! I was on the computer while he was sitting on his beanbag chair, supposedly resting and watching his show. Unbeknownst to me, he had gotten ahold of a jar of vaseline and was digging into it between his feet where I could not see it. He must have gotten out half of the contents and spread it all around his clothes and the carpet....a spot about the size of a small plate. He got up and came around to my chair the long way, dragging down the couches and leaving a greasy trail behind him. Then, I saw the mess.....a thick coating of it on the carpet, and a 1/2 in thick coating all over the outside of the jar. That was a lost cause so it got tossed and I stripped Nicholas and had to bathe him in dish soap as it was the only thing I found that would cut through the greasiness. I think his clothes are a lost cause too. Anyone know how to get vaseline out of clothing?? I am still finding remnants of his escapade all over....a handprint on the TV, a smear on the tile by the fireplace, a smudge on his coloring page. Ugh! Later on, I caught him pretending to look out the slider door while he was coloring between his feet on the kitchen floor. I think I am going to have to watch his feet more carefully! He also managed to dump out each and every toy he owns in as many of the rooms in this house as he could. Boy was I glad to see Doug tonight!

I am beat and heading back to bed to catch up from our early morning wake up call this morning and 20 min nap so I had no time to rest myself today. Hope you are all well, take care, and God bless!


Melody

Sunday, October 24, 2004 9:25 PM CDT

Wow! What a weekend! The pace was hectic and we were busy all the time, but we had a good time! We left out of here in mid afternoon, just after Doug got home from work, we finished packing, and loaded up the car with bags, medical supplies, a crib and linens, and 2 dogs. The trip up was good and Nicholas slept some. We checked in, dropped our things and the dogs, turned on the fridge and crossed our fingers that it would cool down by the evening when we would need it for Nicholas' things, and headed off to Open Rehearsal at the MSC. The group sounded great and Nicholas enjoyed the music. We then drove by the new Bonfire Memorial and it looked so neat....kind of reminded me of Stonehenge a bit, but more modern. Then, we decided to go out for a nice dinner at Oxford Street, the place where we held our rehearsal dinner the night before we got married. Nicholas enjoyed it almost as much as we did and had charmed all the waitresses so much by the end of the evening, one actually told us it was a good thing we were leaving when we were, otherwise Nicholas would have a date for the following night if we stayed much longer! Then began the LONG night. Nicholas was too wired to sleep and was up til 11 an up again at 7 and very restless in between. I was up about every 30 min or so all night due to his rolling around in the crib next to me.

The next day was spent with one crabby, cranky, grouchy, tired child. We went to the VMO for breakfast, listened to the formers sing at Sing Along, and visited with my former principal from my teaching job. After that, it was off to the tailgate party to see our old friends before the game and then on to the Wesley reunion at the Methodist student center. On the way, Nicholas fell asleep and we saw a group of F16s do a flyover at the game. It was incredible. When we got to Wesley, Nicholas woke, after a 20 min nap. We visited and went to eat at Freebirds and shop for a new Aggie sweatshirt for Nicholas....those things are NOT cheap!!!! Back to Wesley to pick out a pumpkin from their pumpkin patch and then inside to listen to the end of a nerve-wracking game where we barely won. Then, it was time for ice cream, an incredibly long walk back to the car (where Nicholas fell asleep again for about 30 min), and a quick change (with one of us staying in the car with Nicholas while he slept) before heading out again to the reunion dinner. The food was great, the company was stimulating, and Nicholas was in full meltdown mode from intense overtiedness. We ended up leaving as soon as it was over as there were not too many people there we knew well. Again, Nicholas was up until 11:30, but slept in until 8:30 so we gained an extra hour with less restlessness overnight. We ate, packed and loaded, checked out, and ran by the mall for a quick shopping stop and to eat and let Nicholas run off some steam in the play area. On the way home, he crashed and passed out. He slept for 1.5 hrs and awoke slightly in better spirits. We are now home and exhausted with a weary toddler in bed at 8:30. WHEW! I do not see us doing this again for a while, which is fine by me! One Aggie weekend a year with a kid is enough for me!

Nicholas is now running a temp in the low 100's and is having a runny nose, so I am assuming he has a resp infection again, so we are now on the lookout for a sinus infection. He will be going in to the ped tomorrow if he is still running a temp. We have a call into the immuno about that testing she was wanting, so we will see if and when we hear back from her!

Guess that is all. I am going to bed now as I am one tired mama! Thanks for stopping by, take care, and God bless!


Melody

Friday, October 22, 2004 1:12 AM CDT

Wow! Trying to get packed and ready to go out of town, even for a weekend, is quite a challenge with a child with special medical needs. There are soooooo many things to remember to take! We are up and have been trying to get all our things ready to leave tomorrow. Doug has his Singing Cadet reunion up at A&M this weekend, so we decided to make a trip out of it. I just hope Nicholas does not get sick as his fever hit 100 today. We will not be able to update daily as the hotel does not have internet access, so look for a full update when we get back!

A call has been placed to the immuno as she was interested in scheduling a CT scan if he was sick again between now and Nov. 1, so we will se what comes of that. Also today, my sister and both nephews came to visit and we went to my mom's school and had a nice lunch with her. She was the proud Nana as she took her grandsons around and showed them off to everyone! Nicholas enjoyed all the knicknacks in the principal's office! Then back home for a nap, and then off to the mall for a short shopping expedition. We left empty-handed, but my sister found several great deals on things she was looking for.

On a sad note, the Houston Astros officially ended their World Series aspirations as they lost to the Cardinals today in Game 7 of the playoff series. It sure was a great series and our city is proud of our hometown heroes! There is always next year!!

Hope you are all well and loking forward to seeing some new entries in the guestbook.....if you have not signed yet, please do and if you already have, feel free to leave another message! Take care, God bless, and see you in a few days!


Melody

Wednesday, October 20, 2004 11:39 PM CDT

Good news today at the Neurologist's appt! The doc says that he does not think that Nicholas' delays have any neurological causes and most likely he is delayed as a result of the medical issues and problems that he has gone through during the rapid development in infancy. He says that the thing that makes him believe that is that he is closing the gap of where he is and where he needs to be. Kids with neurological damage will close the gap until a certain point and then maintain that gap throughout the rest of development. So, unless we see this happening with Nicholas, we do not need to bring him back. I am thrilled about this! It has to be the best specialist appt we have had in a while!

On a more disappointing note, Nicholas had his weigh in today at the peds as well and he lost 6.5 oz. I am wondering if the 12 oz gain he had last week was a mistake as it seems strange to me that he would yoyo like this while his eating has not changed dramatically. We will see how next week goes.

Other than that and the Astros not winning the game today, there was really no other excitement. Thanks for stopping by and hope to see you in the guestbook soon! Take care and God bless!


Melody

Tuesday, October 19, 2004 8:55 PM CDT

Tomorrow is the big day! We FINALLY get to go to the Neurologist! We had OT today and our therapist helped us put together a list of her concerns as we all felt as though the concerns would be more valid coming from her professional opinion than for us to just tell him from a parent's viewpoint. We are also taking the report the Orthopaedist we saw back in late spring with us as well as it states his concerns and reasons for referring him. I hope we have all our things in order. The appt is scheduled for 9:30 and then we will take him to his ped for his weigh in after that.

We also went to the library today as we will miss it tomorrow and after OT, we met friends for lunch. Late in the afternoon, Doug and I had our dental appts and we both had no cavities, so it was a good visit today!

Guess that just about does it for our day. Hope you are all well and healthy. Take care and God bless!


Melody

Monday, October 18, 2004 9:42 PM CDT

Sorry about yesterday! We got so busy and I meant to post, but I fell asleep! Yesterday, we went to church, found some pumpkins, lunched with friends, went birthday present shopping for some upcoming parties, and grocery shopped. A lot in one day!

Today, Nicholas was so wiped out, he slept in until 10:30 and then we went shopping with friends until late this afternoon. What a long day today, too! His OT had to reschedule for tomorrow as she was not feeling well. I am glad as we do not need to catch ANY GI bugs in this house! She should be here tomorrow instead. I want to try and get her to write up a short summary of his delays and muscle weaknesses so we have somehting from her to take to his Neurologist appt Wed. I think it would be better coming from her and not from a parent as she has professional knowledge.

Tomorrow, Doug and I have dental appts.....UGH! Then, Wed morning we have the neuro appt and a weight check......and very possibly stopping in to see the immuno as well while we are at TCH. We shall see.

Nicholas has been eating ok the past few days. I sure hope the weight check reveals that. I am so wanting for him to get this eating issue off his back. He needs to be able to feel normal!

Thanks for stopping by! Hope you are all well! Take care and God bless!


Melody