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Saturday, October 11, 2008 6:31 PM CDT

Hi there...

we got home last night...

we have been able to meet 2/3's of the minimum intake goal for him in a 24 hour period. We hope to make it up in the night.

I talked with his metabolic doc today, who called to check in on him...and he is having a 'pseudo-regreesion". His is toe-walking, his esophoria is worse (left eye doesn't move quite in unison with the right) and you can tell he is slow minded and slower talking, although his speech is intact.

His body temperatures are all over the place...down to 95.3 this morning and then increasing throughout the day with 99.5 by bedtime. That autonomic stuff still puzzles me!

Otherwise he seems okay. Also, while talking to the doc today, he said he is going to meet with GI next week to discuss common cases and plans to bring True up. He thinks its time to look seriously at the gtube decision and see if that will make him better overall this winter. It would also take pressure off of True to drink...he could drink and eat for pleasure and then we can make up the difference on a pump at night. It would also decrease ER visits. So that's definitely on the table now and I will keep you posted if I hear back this week.

We took a walk on the beach today and made him takes lots of little rests on daddy's shoulders or on the sand. But thought it was good to get him in the fresh air and walking a bit since he's been in bed a week.

Tomorrow Daddy will stay home with him while I take the older two to visit the church that they went to with Fred last week. We might have a visit from some friends in the afternoon while True is napping for most of the visit.

Anyway, I hope this finds you enjoying your weekend, wherever you may be! Thanks for all your support and True is to the age now where he definitely gets into the guestbook entries, so leave him a message!

love
deb for the gang

Thursday, October 9, 2008 8:17 PM CDT

hi everyone...

sorry this is so late in coming but it was such a long night last night that i ended up napping during the time i could use the computer. So Donna is copying this and posting it for me.

Last night around 9p True's heartrate started dropping and his temp went from earlier that day to 103, down to 95-96. Unfortunately in the world of mito kids...thats not so uncommon...its part of dysautonomia. There are tons of things our bodies regulate automatically...but many of those things randomly malfunction for True. We hadn't had anythng like this before...but experience other issues daily.

The treatment is to give a big dose of IV fluids...called a bolus. Right after the
residents came in, his IV line blew. HeLs traditionally a hard stick...so everyone was worried knowing he needed fluids now but no line. The docs walked down to the pedi ER and got the best IV person and brought her up. Thankfully. they got him on the first try!

Now tonight as I type this...his heartrate is dropping again and the docs are being called. :::sigh:::

Last night a nurse accidentally woke him up and we were up almost two hours so I was exhausted today bc the residents woke me up early but i made them let True sleep!
I have to mention what a blessing it has been to be here at this hospital where everyone gets funky little metabolic kids. I don't have to be the expert always training doctors and nurses and having important things blown off.
Our main metabolic doc was out today so i dont know the full plan tomorrow. True will get his last doses of iv antibiotics right after lunch. He is tolerating the feeding tube well and still taking little by mouth. I am noy sure if he will go home on the NGtube if he isnt eating. Also, he is still running fevers up to 103 so I am not sure what the parameters will be.

While we are anxious to get home...I dont want to get there and have to come right back. Please pray for wisdom for the docs and for True to be clearly well first or for them to give me a clear plan to support him at home.

Fred and kids are faring well but Fred has no work today or tomorrow. We continue to pray for provision. Thank you for your support and love...its a great encouragement to get an email...read your guestbook entry.

love
deb for the gang

Wednesday, October 8, 2008 9:12 PM CDT

I am not kidding, I just logged off from Debs first update and she just informe me they lost True's IV line. SO, they are going to have to re do the IV so he can get fluids. I almost hesitate to hit the log off button in case my phone rings again. Please pray for them...I think this is going to be a long night.

Wednesday, October 8, 2008 8:56 PM CDT

I am updating for Deb as she is in the hospital.
She just called and asked me to update and let every one know that now they are dealing with ONE MORE THING..
True now has a low temp of 95/96 and his heat rate is much lower than his normal heart rate. They are going to bolus him extra fluids to see if they can help. Sounds pretty autonomic.
True had to get a NG tube tonight and handeld it pretty well.
Deb looks very tired and probably could use a nice hot meal, and long hot bath. lol...
They are going to be there until at least friday or until they correct themselves.
I will update as she gives me updates, or she will when she gets computer access.

Wednesday, October 8, 2008 2:19 PM CDT


Hello Friends...

I'm sorry I'm just now updating this but I couldn't do that from my phone either. However, I have a friend that will update it for me from now on if I can't get to it.

True is still in the hospital and will be until at least Friday. He is still not responding to the antibiotics.

There were a few hours this morning where the fever was in the 99 range and we thought that we were in the homestretch. However, it spiked in the night and again this afternoon to 103.

The docs have consulted with an infectious disease doctor about why True is not responding to the antibiotics. Since Gaige did and from the xray it appeared to be bacterial pneumonia the ID doc thought that perhaps he also has a virus and that is why the fever is not going away. The option would be to stop the antibiotics and watch him for two days and see if he got worse or better, but no one is in favor of this.

The other option is to make him finish his complete round of antibiotics while here (5 days of iv antibx) and hope he was better at the end of the course. We are doing this.

Dr Korson had opted to taper down his IV glucose today in hopes that he would want to drink, but he only drank 3 ounces in about 9 hours and was starting to have a metabolic crash.

At this point, they recommended that we place an ng (nasal-gastronomy) tube in his nose to restart his feeds and see if that would help in the healing process. There has been a lot of talk lately about needing to put an ng tube in to see how he could tolerate feeds given his delayed gastric emptying. Sometimes the problem is that the stomach can't handle the fluids/food fast enough even after you put a tube in.

With much talk about True's inevitable need for gtube (feeding tube in his stomach), this is what they wanted to do beforehand to make sure his stomach could handle it. If he couldn't then they have other options like a tube further down the intestines or possibly a central IV line. The regular gtube is the best option, though.

So this is going to be helpful for now AND helpful for when the gtube is no longer an option.

True is exhausted today and sleeping right now. When he wakes, they will place the ng tube. I'm sure he's going to hate it and I'm not sure how much he will fight it. He's a pretty good patient about most everything but he's got a sensitive gag reflex. His throat is also, already sore. They will slowly advance the feeds and simultaneously taper the feeds.

So, regardless, we are here at least until Friday afternoon after antibiotics. We had some visitors today...another mito family who was here for appointments...and our nurse was next door for an appointment so True had some visitors and mom, too, which is great! These days are long and tiring and it helps break up the day!

We'd love to hear from you! Email is still a good way or calling or texting. Calling is riskiest, as I may or may not be able to answer, but I'll try.

sign our book if you want and I'll pass along your wishes to True.

thanks and love
deb for the gang

Tuesday, October 7, 2008 1:36 PM CDT

Hi everyone...


Over the weekend, especially Sunday evening, it appear True was getting worse and his fever just wasn't manageable. When sick, his metabolic specialist has us feed him every three hours through the night because all things metabolic in True can go haywire if his body demands more than he is putting in. After his 10p feed Sunday, he started refusing. I called the pediatrician at 4am and she said to take him in but I had only had 30 minutes of sleep so I slept for another hour and half while Fred kept an eye on him.

We got stuck in rush hour traffic, even leaving at 6:20a and got to the hospital about 8. The great thing was our meta doc, Dr Korson had already arrived at his office and was able to come right down, make a plan and have him admitted. It was obvious that the oral antibiotic was not doing the job. They re-xrayed his lungs and they said his pneumonia was now "profuse" which meant widespread, whereas Thursday night, it was such a tiny spot, the doc had to wait for the radiologists opinion before calling it!

The plan that was after he was fever-free for 24 hours (and he's taking in enough oral fluids), he could go home. We aren't there yet...he is still having breakthrough fever. So this afternoon, they added a second IV antibiotic. We are now also worried he might have c-diff which is something that happens to the gut while taking IV antibiotics...he had it when he was a baby and had them for his surgery...the only other time he's been on IV antibiotics. So we are going to culture for that later, I believe. If that is positive, I think we have to stay for a certain amount of time for the treatment but I can't remember from three years ago.

So please pray! Not just for the fever, but for his gut and he could drink enough to get home. Also, pray for our guys at home. Seems like everytime True is inpatient (its been since april 2007, so that's great), Bliss visits and boo-hoo's. Its always some other reason why or something she can't explain, because she would NEVER admit it was that situation, because she'd want to spare feelings, but she hurts on a few levels, I think. So pray for her heart...Fred's patience and Gaige to just go with the flow.


thanks for being here
deb for the gang!

Friday, October 3, 2008 6:25 AM CDT

Hi...

I know its been a terribly long time since I have updated this site! We sort of took the summer off, as best as we could, from all the appointments and such, since we were moving and all the kids are home.

We seem to be right back into the throttle of things with cardiology appointment, where thankfully, nothing surprising was found. While True's heartbeat is a little rapid, it is autonomic and of course, just like everything else he has wrong lately, needs more fluids!

True also saw the physiatrist lately and will be getting a new wheelchair and DAFO's. The DAFO's are ankle to toe braces to help with the turning in of his right foot and also to help with the tone in both ankles...we pick them up mid-October.

While I adore fall and there is NOTHING like a New England fall, I enter it knowing that True's 'sick season' is lurking around the corner. Actually, I wasn't so sure this year would be as bad as last winter since it was the first one that was hard for him. Sicknesses started in December and ran through the beginning of March. Then, we had six easy months with relatively no illness (but a case or two of mild sniffles) and just dealt with the hydration and temperature (heat outside) issues.

However, Gaige came home sick a week ago...and over the course of six days, it developed into pneumonia. We tried to keep Gaige banished to the basement family room or his bedroom, but that wasn't enough. I had Gaige at the ER on Wednesday night and found out it was pneumonia.

Then last night around 6p True started running a fever. I waited to check it again in two hours, hoping it was maybe a fluke or his temp regulation problem (although its never THAT high when that's the problem), but he was still running 102. So I called his pedi and they said bring him to the hospital since we knew what we were dealing with. They did a chest xray and sure enough, True had a small spot developing and has pneumonia too. So, we are happy we caught it really early and are hoping to avoid a metabolic crisis with him. As long as he continues to drink, we will be able to.

Everything else is good...we like our new house a lot and are enjoying our sweet little small-town life. Its funny to live in a town of 6,000 but its nice. We love just being a mile from the ocean.

Dont' forget to sign the guestbook and let us know you stopped by!

thanks
deb for the gang!

Monday, June 30, 2008 5:39 AM CDT

Just thought I would take a few and catch everyone up to speed.

Apparently True is having a lot of autonomic issues...joy! The biggest problems are his kidneys and his breathing, but its also affecting motility and the bladder somehow but we are still trying to figure that one out.

His kidneys aren't holding on to his fluids, making him fail to concentrate his urine. The treatment is to give more fluids but we are constantly chasing him around trying to get more into him. Nephrology wanted a gtube immediately, but our metabolic doc wanted to make sure we explored all the options so he called a care conference (CC).

We had the CC Friday...with nephro, peds, metabolic and GI. I just sat back and let them argue it over. The GI feels True's tummy is not big enough to hold the fluids he needs. So tha'ts a big concern and in that case a gtube would be a mistake. So the plan is try periactin to try and stimulate his appetite and thirst and hopefully stretch his stomach some. If that doesn't work then they will put in an NG tube for a couple of weeks to see if he can take the fluids and if he could, they would do the gtube and if not, we'd have to look at a central line which is scary bc the infection risk is so high.

True had poor results on his sleep study with his SATS staying at 86 for part of the night plus a lot of breathing related arousals. So he started on oxygen two weeks ago...and I think its helping his fatigue levels. Of course school (twice a week) ended about the same time, so its hard to say which is which. He's done well with it, so that's been good.

We had a nursing eval last week and he qualified for 28 hours...which totally shocked me! So now I am trying to find a nurse. I happened to call someone randomly from the list they gave me who has two mito brothers, so that's good. She can only do a few hours a week but its a start. Because of our move (see below), we will have to hire nurses now for two months and then train new ones who live closer to our new house...its an hour apart and with these gas prices its hard to get people to drive far.

He's having those dreadful urodynamic studies next month, they are not sure what is going on and if and how it ties into the kidney issues.

True has also been very officially diagnosed with Mito by the Mito guru, our metabolic specialist. Its a clinical diagnosis and he is making a referral for a biopsy but he said based on the newest clinical diagnostic scales, he definitely fits and part of it is to have ruled every other possibility and of course, he has done this. Its still incredibly hard to wrap our minds around it. Just tonight while making dinner and doing nothing related to medical junk...Fred and I were just struck with it...how can this be? Even if mito is as common as 1 in 2000, as some believe, how did this happen to us twice, with two unrelated adopted kids, in the same family??? Maybe one day, some piece of science will be able to tell us. I'm constantly amazed at the scientific advances since Andrew died. I'm not in a rush to do the biopsy...with ten doctors all feeling its mito, it would just be supportive, so whenever it happens, it happens.

Then to add to all the stress of this new information and symptoms and treatments...our landlords are in preforeclosure so we have to move. We had planned to stay here one or two more years b/c True's school nurse is so great (you can see True and her on the video MitoAction is putting out for families to train their school systems on how to support their mito kids), but we had planned to move an hour away after that. So why move twice? We had hoped to move at the end of July so we could get in before school started and get settled.

But, we found a great house...with central a/c which True definitely needs...but can't get into it til Sept 1st...more life in boxes...and the house has been shown 7 times in two weeks...stressful to try to keep it show=ready! But we are signing a two year lease...so no moving for two years...yippee!!!

I think that's it...its been a whirlwind this past 6 weeks or so!!!!

Please sign our guestbook!

thanks
deb

Wednesday, June 25, 2008 6:17 AM CDT

Hello...

Its been a long while since I have updated...I guess things are always changing around here and I should update more but somehow that keeps me from doing it!

Lots of changes for True...we got the results of his sleep study and found out he needs oxygen while sleeping. He's getting just 1.5 liters at night, so not terribly much. The doctors feel its autonomic, which means he's not breathing as deeply as he should. This is common with mitochondrial disease. He also has problems now concentrating his urine which means he needs more fluid, once again autonomic and something they see in Mitochondrial disease.

We saw our metabolic specialist this month, the mito guru. He is testing True for ONE MORE metabolic disease which he believes will be negative. He said that would only leave mitochondrial disease. It was an elimination process. He is also making a referral to Cleveland for a muscle biopsy.

Because of the fluid situation, there is meeting among several of his docs this week to see if he needs a feeding tube so we could run fluids while he sleeps at night. If he has to get it, I am not sure when they would do it. Because anesthesia is so risky for him, I am considering just having them do a frozen biopsy at the same time and seeing if it gets a diagnosis before making a trip to CCF for a fresh one...since he would be out anyway and traveling is always so hard on the whole family.

In other news, we are in the process of moving...our landlord decided to sell the house we are renting. Just horrible timing!!! But we are trying to get to a county that has more for Gaige, so that will be a benefit.

Gaige has done okay...especially compared to this time last year. He is doing a social skills camp this summer he just started and seems to be enjoying. It will end in a performance in drama...I can't imagine he will do it, but we'll see!!!

Bliss is sad to not be in school because she loves to learn, but also happy to be home and chilling. Our new house will be close to the beach (as opposed to an hour away here) so that will be great at the end of summer.

We'd love to know you stopped by...sign the guestbook!

deb for the gang

Sunday, May 11, 2008 6:51 AM CDT

Happy Mother's Day to all you Mothers!

True continues, overall, to remain stable and illness-free for a bit now. His environmental allergies are really bothering him, surprisingly so, to me anyway. But I think we are through the worst of pollen season and it should be better in a few weeks.

True is still struggling with fatigue. I think the carnitor, or the first-phase of the mito cocktail, is making a slight difference. But the benefits haven't been super obvious yet. I had to go and get him from school one day last because of the fatigue. So even though I get a couple hours of freetime, three times a week, I am always on-call to have to come and get him at any time.

Last week, True got a prescription for a new wheelchair and feeding seat. Of course, this takes months to accomplish from the time you get the Rx til you get your equipment. I haven't had a chance to research what kind of chair he needs but I need to get to that soon.

He also saw the eye doctor and we found out he will need glasses eventually. In the grand scheme of things, this is nothing major. Its funny because Fred and I always assumed he would need glasses...just fits his personality or something. They also tentatively confirmed our suspection that True is color-blind. The testing isn't considered reliable until they are older but we thought he was because he doens't understand color and is so bright and quick to learn many other things.

Its been nice to get some answers about him, but it usually leads to more questions. Our metabolic specialist and I will have a big pow-wow next month and that will be good. True has a sleep study this week, too! joy!

We are gearing up for the life of Love project and would love for you to join in your own city. You can go to www.lifeoflove.org to see how we celebrate our son, Andrew's life each year.

Gaige is doing better in some ways and in others, teetering on losing it all. Its just so hard on him this time of year, and although I love summer and beach-going days, I almost crave fall because he does so much better.

Bliss' eyes turned out to be fine vision-wise. However, her glands that produce wetness were inflamed so we are treating those. She was a little sad...she really wants glasses for some reason. Until she realizes she is stuck with them, i am sure.

We'd love to hear from you, so sign the guestbook and let us know you were here!

deb for the gang

Thursday, April 17, 2008 6:53 AM CDT

Wow! Wow! What a week!

True's allergist called last week to ask me to come in, without True to get the results of all the allergy-blood-testing. I had no idea what to expect.

Unfortunately, while True did grow out of his shellfish allergy (like that's cost-effective!)...he has 28 allergies now! That wasn't even the worst news. She wanted to test him for 4 of the 5 foods he currently eats...potatoes, carrots, apples and banana's and guess what? He's testing allergic to all of them! However, she says since he isn't currently reacting to them, that we can continue to feed him but eventually he will react! uggh!

And we have a latex allergy, too!

He did test negative to one other thing. Pork. So we are doing a bacon trial and he is OBSESSED with Bacon! He is having some tummy aches so I am not sure he's going to be able to keep eating it but we will see.

He continues to have energy issues at school. They called again yesterday for me to come b/c he had such a huge change within minutes. It was funny, because by the time I got there, he was better and the nurse was trying to convince me. I told her not to worry because we saw this all the time...the up and down...the waxing and waning...and I believed her.

Yesterday, also, after several exchanges with True's neurologist, she was diagnosed him as "probably Mitochondrial disease". I know that may sound like a non-diagnosis, but its actually a fairly firm one. There is a set of criteria that doctors use when they can't find the genetic mutation (they can only find it in 10% of the cases at this point) and/or the child is not able to obtain a fresh muscle biopsy. The doctors use a point system based on proven and known symptoms and tally a score to see how the child ranks. The categories are "possible", "likely", "probable" and "definite". Definite can only be accomplished with the points from a fresh muscle biopsy.

A fresh biopsy is not possible for us right now because we don't not have access to private insurance because of Fred's job. They conveniently cut his hours to three days a week when he became eligible for it! So we are frustrated. With Andrew, we did a fundraiser to raise funds for the fresh biopsy (only done in two places in the country) but I don't feel I can ask them again. So I feel stuck. Of course we are anxious over knowing another child has this and it would nice to know for more definite. But we are trying to just get used to the probably diagnosis and relax until a biopsy is available for us. Its frustrating, but it is what it is?

We, especially me, are still trying to sort through our feelings. Fortunately, the neurologist doesn't think his is a terminal type, so we are elated to hear that. For True it will be more about preventative medicine to keep him safe...watching his energy levels...keeping him extra-hydrated when having body stress and so forth. So we will continue to LEARN him and figure it all out.

Although I am amazed at his ability to listen to his own body and communicate it to us. He's not perfect at it, but he's learning. So that's all good!

Sign our guestbook...we'd love to hear from you!

want to read more about mito?

www.mitoaction.org

deb for the gang

Friday, February 29, 2008 4:41 PM CST

Hi Everyone

I hope your winter is nearly gone...can't say the same for ours but hoping snow tonight might be our last!

Gaige actually had a pretty good month. It still amazes me what a difference the routine of school does for him! The kids were out on winter vacation last week and he still did pretty well being home all week. I think now that he is nine, I am learning more and more how to change our focus to what he needs to know to succeed when he is 18 versus trying to make him conform to normal 9yo expectations. So, raging battles over dinner (his sensory system is so different, making very few foods taste good to him) don't really matter, because when he's an adult, one of the privileges is getting to pick what you eat...so I'm learning slowly but surely. However, its more important to teach him that when someone says its raining cats and dogs, its not really raining cats and dogs...or that when an adult is talking to you, not to cover or close your eyes. Those things matter so much for his future, so I am trying reshape my focus on the important vs the irritating! Since everyone thinks he's older, and he's wearing a size 8.5 in mens shoes (yeah! Ugh!), he's already telling people he's 10, even though he's still adjusting to being 9!

Bliss is well, as usual! She is writing more and more stories every week and she really cracks us up with them. My love of writing about real life is so much easier than writing fiction, but that's what she loves and its cute. She had an OT eval and there are few little concerns that are left over from her cerebral palsy issues. Although we consider her recovered there are a few lingering, mild issues that are creeping up in school. So we are handling this. Bliss is already planning her birthday soiree in April!

True battled a couple more illnesses since last time but avoided the ER! That, in and of itself, was a miracle and I am thankful! He also started preschool...he's not gone a full week yet (4 day/wk, 2.5hrs/day) but he's enjoying his "friends". He gets tired by the second hour and is wiped by the time I get him and I feel a little sad about giving away the best part of his day, but everyone keeps telling me its good for him! That remains to be seen in my book! He had some more GI testing this week and we found out that his stomach is still taking forever to push his food through...just 29% at one hour, where it should be close to 75%...and maybe explains why he takes an hour to eat a meal! We had a good appointment after and I am pleased that this GI is not overwhelmed by True and has plans, although he is certain to be mostly formula fed for years to come. The talk of a feeding tube is still on the table, along with hernia surgery but we are really watching how he does the next couple of months to decide if now is the time.

We are still waiting for True's skin biopsy results but know they are not in their respective labs for evaluation, so hopefully it wont be terribly much longer. I am trying not to get my hopes up that they will find it on the first try. True continues to be one of my heroes, rarely complaining of all he is going through...when I feel like complaining I remind myself of his strength! As I type he is saying "To infinity and beyond!" and pretending to be Buzz Lightyear.

Please sign our guestbook and let us know you were here!

deb for the gang

Friday, February 1, 2008 10:22 AM CST

Hi Everyone...

Hope you are well...and having cozy (as our friend Katie says) days indoors during this time!

Gaige is officially 9 now! He had a skateboard (and snowboard and sled) birthday party, again with True. He really enjoyed having his two friends from school over and is happy to be closing in on the double digits! He tells everyone he is 10 or 11 because he is so tall that no one believes he is 8 or 9. In fact, I just bought him new shoes and they are MENS SIZE 9!!! I can't even imagine what size he will be wearing at age 13! yikes! Gaige is doing well in school...he just made it through the first quarter of reading, which is a huge accomplishment for him. Gaige's behaviors have been pretty contained...he's had a few discipline issues at school but overall, much better than where we were last year. We are already making summer school plans and they want to send him to a social skills day camp, which I think will be fantastic!

Now that Bliss is an award-winning writer, She's working on a story now about a girl who is trying to find someone to teach her to whistle...Bliss whistles all the time, including when she did something wrong and wants to look innocent.,..so its art imitating life! She continues to amaze us with her character and perseverance with her brothers...in spite of their issues and her frustrations at times, that she sees the importance of being their friend and being a good role model for them. She longs to honor Jesus in what she does. We couldn't ask for more...well, okay...maybe that she quit sucking her thumb!

True is now 3 or 'Free" as most three year olds say! He's very cute about it, of course, and loved his version of 'cake' that I made for his party. It was nice to see him feeling well for the party after having a really rough four weeks. Between mid-December to mid-January, True was in the hospital for the MRI and needing IV hydration and glucose...to three ER visits. One was just for an ear infection, but since there are allergens in most oral medications, he had to have IV antibiotics...and the other two times were for metabolic crashes, where his body became acidotic and he requires IV hydration and sugar. The unfortunate news in this happening so many times is that True's already-difficult veins are now shot. They could not even get a teaspoon of blood for a blood draw last time. This is a pretty big problem for a kid like True. Because kids with metabolic issues require fluids to combat the acidity in their bodies, its important that we push and push him to drink (and eat) at home and that they be able to get a line in when we can't do anymore at home. Because of this, we have met with GI and our pediatrician (a second meeting will happen today) about what to do. Many kids end up with permanent lines in, but there are huge risks of infections...other kids end up with feeding tubes so the parents can bypass the child not feeling like drinking and pump fluids in to avoid an ER trip. The plan right now is to see how it goes over the next month or two...if we continue to be in the ER every two weeks, then something needs to be done. Also, the GI feels once the metabolic disease is identified that he would make a better decision and thinks a gtube is inevitable anyway...question is when. Its a HUGE decision and yet, a HUGE and scary dilema when we are in the ER and they can't do what they need to do and have to stick True over and over.

True's nephrologist gave his kidneys the all-clear for now, but wants to follow up in a few months with another renal ultrasound to make sure his kidneys are growing properly. Today I met with a nursing assistant program/PCA to see if True qualifies for some help...which means having someone that is well-trained to take care of him if we have something to do. Tomorrow, however, I am meeting with True's new preschool! He starts week, to go to a preschool for kids with developmental delays and medical issues...and he is very excited. We will be making a strong medical-safety plan for him and Mom is working on trusting them. The nurse really seems fantastic and I will be training his teachers too. Its only 2.5 hours per day, four days a week, but we have seen he is having some major stamina issues and with the germ exposure, it is going to be interesting to see if that helps him build immunities and stamina or makes things worse. We hope the former. He is so wonderful to be around...I am definitely going to miss him those ten hours a week! (pic below...he's eating "cake" batter!)


The situation with Fred's job is still up in the air. He was actually offered a job Friday that he very much would have enjoyed doing, but after a lot of prayerful consideration, he turned it down yesterday. The job would have required Fred to be away from home about 60 hours a week starting in spring (50ish now), meaning he would only see True a few minutes a day and B and G about 30 minutes a day...and Sundays. We just do not have a good enough support system and relationships established yet to allow him to be gone that much, especially when True needs to go to the hospital. So we felt God could and will provide something better. Fred is working the three days a week (it will go back to 5 days in spring) and then picking up some side work when he can, so hopefully its just a matter of time!

People always comment that I don't say much of anything about myself here...but I honestly do...because everything involving the kids is connected to me, so its there. But, in addition, I am looking forward to going to a women's retreat next month on Cape Cod. I will be close enough to feel okay about leaving and even though, I will not know a sole there, I look forward to meeting some ladies.

Well, I think that ties it up. Pray for us and that we have a better February! Pray for True in particular as he starts school this month and for Fred and I as we manage illnesses at home (didn't mention we have to feed him through the night during these). Pray for direction and just the right job situation for Fred.

Please sign the guestbook so we know you were here! Many thanks for your prayers and support and much love to you and yours!

deb for the gang














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Start the year off right. Easy ways to stay in shape in the new year.

Wednesday, January 16, 2008 11:43 AM CST

Well, its a beautiful snow-covered sunny day in New England...which is nice. Although I haven't left the house since Sunday, but that's okay. I like it!

I am living in puke-ville though! True was in the ER Saturdya for a metabolic crisis...the ketosis caused vomitting but he was otherwise not sick.

Monday was Gaige's birthday and I knew something was off b/c he wasn't happy with anything he ate. He wanted tons of sugar...we let him have a little more since it was his bday but not much. He didn't even eat much of his pizza for dinner...his fave! So I felt something was up.

Well the autism doesn't help Gaige understand what is happening with his own body too much. So in the middle of the night, we were cleaning up puke! fun times!

Gaige's stayed home Tuesday...perfectly still...so there was no denying he was ill. He's better today and went to school...he HATES missing school so he was motivated!

Then last night...it got Bliss! So she's home today and past the vomiting stage and wanting to eat some. She also didn't want to miss art today but should be able to go back tomorrow. I have been keeping True away from those guys!

True has not be well for weeks now and its getting taxing. he does seem a little better today...hopefully it will last longer than of late. Tomorrow Fred and I have a big day with him in Boston...3 year checkup, kidney ultrasound and then an appt later with the kidney doc for the results.

Fred has a job interview Monday...we are hoping its the right money and something that he will like...and that they offer it to him...we are getting pretty desperate for him to have full time work again. So say a prayer.

I am coping the last update below in cas eyou missed it. I really am trying to do this more! Hope you are well...sign the guestbook if you can...

deb for the gang
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Thursday, January 10, 2008 6:21 PM CST

Hello everyone...

I promise in the new year to do better at this updating business. True finally got over the sickness that was his December, so that's been good. We've been busy with all the school evals they do because he is turning three. He will start a program, I think, by the end of the month. It will be a big leap for me to trust someone with all his issues, but we will see!

He and Gaige have birthdays next week...3 and 9! they are having a joint party again...skateboarding! True and I decided to make him a potato cake this year, so I gotta figure that out, but up for the challenge!

Today True had his skin biopsy. They took a piece that was the size of...hm...a piece of rice I guess...it was tiny. Its amazing that they will watch it for a month and then divide it up to send to different labs. They looking for disorders of ketone utilization and disorders of gluconeogenesis. I have tried to find out more about these but its all so technical. The results will take about three months to get back...so here goes the wait!

Gaige's 500,000 genetic test came back last week...after a three month wait...it was normal. Doesn't mean much becuase it only gives answers about 10% of the time. So we are back to my original diagnosis...Gaige Wells Syndrome! Its fine if we never know what syndrome he has b/c it wont change a thing about what we are doing today.

Bliss got an award in front of school today for being a great writer...the only girl in first grade to get it! We are so proud.

Don't forget to sign the guestbook so we know you are praying and reading!

deb

Thursday, January 10, 2008 6:21 PM CST

Hello everyone...

I promise in the new year to do better at this updating business. True finally got over the sickness that was his December, so that's been good. We've been busy with all the school evals they do because he is turning three. He will start a program, I think, by the end of the month. It will be a big leap for me to trust someone with all his issues, but we will see!

He and Gaige have birthdays next week...3 and 9! they are having a joint party again...skateboarding! True and I decided to make him a potato cake this year, so I gotta figure that out, but up for the challenge!

Today True had his skin biopsy. They took a piece that was the size of...hm...a piece of rice I guess...it was tiny. Its amazing that they will watch it for a month and then divide it up to send to different labs. They looking for disorders of ketone utilization and disorders of gluconeogenesis. I have tried to find out more about these but its all so technical. The results will take about three months to get back...so here goes the wait!

Gaige's 500,000 genetic test came back last week...after a three month wait...it was normal. Doesn't mean much becuase it only gives answers about 10% of the time. So we are back to my original diagnosis...Gaige Wells Syndrome! Its fine if we never know what syndrome he has b/c it wont change a thing about what we are doing today.

Bliss got an award in front of school today for being a great writer...the only girl in first grade to get it! We are so proud.

Don't forget to sign the guestbook so we know you are praying and reading!

deb

Sunday, December 23, 2007 7:22 AM CST

Hello everyone...

Again, I never seem to update this for much longer than I think it has been! Its been a busy month and True has been sick and off many more days than I wish. IN fact, we had to postpone the MRI and we just had it done last week. The results were abnormal, but not diagnostic (what a surprise!) He has a bright spot and she will have to do yearly MRI's to check for changes.

I was able to have a long talk with his neurologist Friday. She is quite convinced that he has Mito. Of course, pretty much every doc we have seen thinks it is too without me saying a word about it...its still hard for me to even say, so I just don't. The metabolic specialist, one of the top mito guys in the world, isn't as comitted so its hard to know how to take all of it. My stance is always not to tell other docs about a diagnosis until someone puts in on paper. Well, our neuro has officially put it on several orders but I still don't know what to do about it. So I'm grappling with the whole thing.

He is pretty sick right now. We were in the ER Friday for fluids and he's worse in some ways and better in others now. Please say a prayer for him to recover. He is SO excited about "Kisstmas" that I hate for him to be sick...or worse, in the hospital!

Everyone else is well. There are stresses with Fred's job, which got cut to three days. Going in to Boston for drs appointment averages at least $20 per trip. Fred's just trying to get side jobs as he can. But overall, we are good and we are blessed.

Below is my annual Christmas greeting if you haven't gotten it already. Be well!

love
deb for the gang



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Seasons Greetings!

Well its that time again for my annual 10 things I know for sure letter! (Okay, so I had 12 this year). I started this tradition the Christmas before we lost our sweet Andrew when I needed to find a way to focus on all the gifts of the everyday. This is the fifth edition for us to take time to focus on the 'everyday' miracles in our life! Its been quite a year, with another big move, and if you have been reading my blog, you know God had to knock us over the head to get us here. However, God has confirmed several times that this is where we are supposed to be! In many ways, a hard transition and in others an easier one.

This is such a therapeutic activity for me, and I encourage you to either make a list of your own or take a few minutes to reflect on the things that we skip right over, that truly are small miracles for us. We'd love to hear from you, whether you make your own list or not.

Merry Christmas~

What I know for sure...

I know that living with a gaggle of spirited children, keeps you acutely aware that you are extremely alive (okay, and tired, too)!

I know there is something so sweet and special about your other children continuing to learn from the legacy their biggest brother left behind.

I know there is nothing more exciting than seeing your nearly nine-year-old who has a hard time relating, start making a point to connect with people by trying to understand football.

I know that its a blessing to finally have answers to long-lasting questions, even though the answers sometimes give you another more precise questions in its place.

I know that while navigating snow can be a pain, there is not just true beauty in what the eyes see, but in what you do not hear, because of the quietness it brings.

I know that you can find the most outgoing, helpful and friendly people while getting your hair cut or having a mishap at the spa!

I know that having an almost three year old who lives on a diet most of could not even fathom, somehow makes you the happiest and most grateful kid most people have ever met!

I know that there is nothing more important as parents, than making every day special and filled with memories because life changes too quickly.

I know there truly is a "Giver's high" and it is a 'high' we should all become addicted to!

I know that living with the tremendous loss of having more family members in heaven than on earth, can make you hold everyone in your life a little closer and hug them a little tighter.

I know that it can make a mom's eyes filled with tears to hear her six year old advocate for her big brother's social inadequacies, her little brother's food allergies and walk in memory of her brother in heaven.

I know that there is something incredibly special about this being the year your child is old enough to enjoy Christmas...and I know he does, because he says "I LUUUUUB KISSTMAS!!!!" every chance he gets.

Merry "Kisstmas" to you and yours...May you find some everyday treasures that you "know for sure" this season.

love
deb for the gang

Tuesday, November 27, 2007 6:54 PM CST

Sorry I took so long to update...I didn't realize I did that.

We have met with our metabolic doc for the send-out lab results from the fasting study. Unfortunatly, they were not, in and of themselves, diagnostic.

What we do know is there is a problem...and likely more than one diagnosis to be made. For this reason, they are going to do a skin biopsy. I am not sure when it will be done but the results can take up to three months! More waiting...my favorite.

I am so glad we did the fasting study though. It really taught me and Fred a lot about what we see with him on his off days and also during crisis. So it was super invaluable in that regard.

The doctor is also sending us to a nephrologist for his kidney issue that popped up. He believes he had renal tubular acidosis. I have no idea if that could be related to his birth family's kidney issues but it doens't sound likely. I really know nothing about kidneys so I have no idea what might be going on here.

We saw a fantastic neurologist for him this month. She spent over an hour and a half with us alone. She feels True has a mitochondrial disease and a fatty oxidation disorder (mito/FOD). She is working True up from her end of things. She is admitting him to the hospital next tuesday overnight b/c of his fasting limitations and then we will do an MRI with general anesthesia the next day. She also referred us to a support they have there at her hospital for families with kids with chronic diseases, so we are going to that soon to see what they might be able to offer.

The question of mito again is shocking...shocking that it could happen twice in our family. However, until someone is convinced or has definitive proof, we are trying not to stress out about it so much. The differential diagnosis that the metabolic doctor is looking for includes five different type sof diseases...one of them is also mito.

The neuro was very certain that True's disease course would not follow Andrews. Their symptoms are so different I totally believe her. Andrew was all brain and there is nothign that can be done about the brain. True's is more metabolic and when you stay ahead of the game with the metabolic stuff, you can keep them pretty stable. Mito is a neurometabolic disease.

I'll try to post after the MRI...although I have no idea how they do their results. In Memphis we usually got them the same day but I know many places do not do it that way.

Thanks for your prayers and kind words. I hope you are having a very blessed Christmas season!

deb for the gang!

Wednesday, October 24, 2007 12:53 AM CDT

Hello All

thanks for checking in...emailing and text messaging! There is not computer access at the hospital, at least in the ICU, so I wasn't able to let you know what is going on until now.

True had to spend the night...while his blood sugar never dropped below 49 after 20 hours of fasting, he was in metabolic acidosis so he had to stay longer for fluids. He was tanked up and ready to go this mid-morning!

I will write more later...after a nap and a bath and little reading...but the bad news is, it was obvious to our metabolic doc that there is a metabolic error going on. The good news is that we may get an explanation to what we already know are issues for him...and why he doesn't handle simple illnesses well. The testing will take a month to get back.

There is also some evidence that True may have something wrong with his kidneys. Our Dr is going to look into some things that happened during the test with some levels. True's birth family has a lot of kidney problems so it may be linked together somehow.

Alright, will say more later...

thanks again for prayers and good thoughts!
deb for the gang

Friday, October 19, 2007 10:18 AM CDT

Hi

everyone...as if rescheduling that would be that easy! We are finally going to have the fasting study for True on Monday. He will go in early afternoon, after doing some fasting for anesthesia. They will then insert the lines surgically. After recovery, they will feed him and then start the monitored fast at 8p. He will fast a max of 20 hours or until his blood sugar drops under 50...which ever happens first.

So we'll see how it goes. I have no idea how he will tolerate the fasting at this age...even though he only has five foods, he does like to eat. So say a prayer for him that he has an extra sweet day. Fred will come up to the hospital Tuesday after he gets the kids to school, so that will be good to have him as a helper to distract him from hunger.

Please say prayers...I'll update when we get back home Tuesday or Wednesday...

deb for the gang

Tuesday, October 2, 2007 10:05 AM CDT

Well...so the fasting study didn't happen last night as planned.

We arrived at the hospital early in the afternoon. Had an appointment with Dr Korson (our metabolic specialist) and then he walked us up to PICU and we were ready to go.

However, the test requires that True have two IV lines. One to keep saline going and then used to 'rescue' him once the fast makes him metabolically decompensated...and another to draw labs from. The labs will be drawn every hour the second day so its pretty intense.

But after six tries....yes, six...his lines kept blowing as soon as they flushed them. So they had to send us home.

The plan is still not set...but he will probably have one or two lines surgically placed today and then do the study tonight and tomorrow. We are still waiting to hear from the doctors.

We will either be discharged tomorrow night or Thursday morning.

Anyway, pray the lines stay good the entire stay, as that is another possible complication and if we were 10 hours into the 20 hour study and lost the line then we would have to stop the test.

thanks
deb for the gang

Tuesday, September 25, 2007 6:40 AM CDT

Man, has a lot changed since our last posting! I'm sure most of you already know that we had an opportunity to move to Mass and we took it. Fred and I had already been planning to move there in the summer of 2008, but we had an open door and rushed to move before school started this year.

There's still a lot to navigate with new doctors, understanding a new and different (but I think its in a good way) school system and so forth.

The kids adjusted really well! Guess they are getting to be experienced movers, too.

We are excited about the upcoming walk for the UMDF in Mass on October 6th. If you would like to donate money to our team for the organization, cut and paste the link below:

http://www.umdf.kintera.org/faf/search/searchTeamPart.asp?ievent=236105&lis=0&kntae236105=2767C0891B4C47B3ACE731BEBA2B75D6&team=2638233

sign our guestbook and let us know you are here!
deb for the gang

Wednesday, July 18, 2007 9:16 AM CDT

Hi everyone...

You can read the last update in the journal section if you didn't get to yet. I'm going to post another one soon.

I just added a new slide show at the top and then one of our new baby nephew and cousin toward the bottom...I just had to do a little bragging! He joins my brothers family...Daddy Ben, Mommy Kim and Big Brother Nicolas!

Sign the guestbook and let us know you dropped by!

deb for the gang!

Friday, June 29, 2007 9:25 PM CDT

Hi everyone!

Sorry its been so long! I could have sworn that I updated this page last week sometime...but I guess I either pushed the wrong button or dreamt it!

Summer is in full-swing here in Beautiful Maine! Tourist Season is gearing up and I find it exciting although I am sure the 'real mainers' find it annoying! Its just unbelievably gorgeous!

Well enough about the weather and on to the family...

Gaige finished up Second Grade! We had his educational planning meeting the day before school let out. He's still at least a year behind in most everything. They did some IQ testing on him and he falls slightly below average and they were able to pinpoint his strengths and weaknesses, so that was good. Fred and I always knew he was a visual learner but that really backed it up and now they are going to incorporate that more into his teaching throughout the day. He will continue to get 10 hours in the resource room, the rest of the time in the regular 3rd grade and then get Occupational and Speech therapies.

Gaige is also back in the psychiatric hospital again. He's on the wing for 4-12 year olds. He was admitted a two weeks ago after having a hard time socially with a neighbor girl. It truly was both of them at each other. His mentor and our clinician were here, along with the school counselor and he ended up slapping the girl in the face. When we tried to get him to come inside to address it, he had a very hard time. It ended up being a two hour rage. We called the crisis team and they got him a bed the next day. He truly has been right on the edge since he was discharged from there in May, to go to Memphis, so we are not rushing it this time. This place does not really do much in the way of behavior modification but they have an autism unit (which is different kinds of goals and stuff than the unit he is on) and we were lucky enough to get assigned a social worker from the autism one, so she is really pushing for him to get some behavior modification so they can see what we see at home. Gaige does wonderful in very structured environments and so he does pretty well there but they are going to push his limits a little and see how he responds. The most interesting thing is Gaige wants Freedom so bad...but he can not control himself within it. He wants to be outside playing but he can't navigate that world and if we try to give him other options than playing outside, he rages. He seems so much more comfortable with himself in the controlled setting like the hospital...we just wish we knew what was best for him. We are caught in a big catch-22.

The good news is he was approved for more in-home services. We have been waiting for there to be an agency to staff it...which they now have but they aren't available for intake until July 9th. Otherwise he will be going to a 'camp' this summer during the daytime. His support person will be able to be there with him some and then at home, too. Pray for wisdom for all involved as we try to figure out what is best for Gaige and best for our family, too. If you want more updates on Gaige, email me, as I send a few out a week just on him.

Bliss is officially going into First Grade! She is quite excited about it and still amazes me with all her knowledge! She has become quite the UNO player and beats me more than I beat her and NO, I am not LETTING her win...she's just really good!

True continues to gain weight after starting the medicine for his gastric emptying delay...I can't believe what a difference it has made in his overall health! We just met with the Early Intervention team about his therapies and they increased his physical therapy, kept speech and feeding the same and decided he needs occupational therapy. OT's do two things for children...address fine motor skills (how he works with his hands) and sensory needs. True has amazing agility with his hands...its definitely above what is normal for his age and something to behold...but he is starting to have sensory issues. Also his other therapists feel he is hyperactive and has a hard time attending to much of anything. They want the OT to figure out if the hyperactivity is behavioral or sensory so I am interested to see how they do that, exactly. True is SO full of life! He goes 100ersonality all of the time...he's such a gift!

I have been busy trying to close out the school year...set up services and a myriad of normal mom-duties. With Gaige inpatient, our summer schedule is on stand-by but we are trying to get to the beach whenever we can...which I adore...its such a blessing to live near the ocean!

Our respite situation changes July 1st...we came in the middle of the fiscal year for their program so they gave us extra hours when we started. However, now we go to 16 hours a month (4 hours a week isn't that much) for this year. Maine has a rule that no matter how many qualifying children you have in your home (both boys qualify), you can just have the 16. In Memphis we got 60-90 hours a month most of the time. I never used that much, but it was nice to have it if we needed it! So it will mostly be used for doctors appointments and I will have to juggle things better. Fred and I always hope we can use some for dates but I guess that wont work now. I do plan to write a letter to the state when it comes up for a vote next spring.

Well I think that wraps it up for us...give us an update on YOUR goings-on...sign that guestbook! We'd love to hear from you...so we can pray for you as you pray for us!

deb for the gang!

Wednesday, May 23, 2007 5:27 AM CDT

Hi everyone!

This is a very late update but we were in Memphis and got to see many of you folks!

True has remained stable after his hospitalization, which is great. The new medicine to help things move through his stomach must be working because he is actually hungry! Of course, the challenge is to keep him full when you only eat five foods! But we're plugging along and before the trip, he had actually gained a little weight. He isn't quite back on his eating schedule since we got back, so I hope he keeps the weight he worked to put on! He's been busy with therapy and is talking up a storm!!! We are really excited as he seems to be starting to understand the whole allergy thing. When he finds food now he will bring it to me or he will tell Daddy "No, Gimme Al-gees!" In fact, while we were in Memphis, I was holding our friends sweet baby and True asked if he could give her a hug. We were at a restaurant and True had his tray full of his safe foods. Baby Lucy barely grazed his apple juice box and he scolded her and said "No, No Baby! Al-gees! Al-gees!!!" He is SO entertaining!

Bliss has been such a trooper with everything Gaige and True have been going through in the past six weeks...I am so thankful for the sweet and tender heart that God has given her. Although we have our days of struggling with having a brother like Gaige, that is extra-difficult, but overall she handles it with grace and compassion. She has just realized that she is almost in first grade! Yesterday she was telling me how there is a month of school left...then summer vacation and then in September FIRST GRADE!!!

Gaige...where to start...some of you have been on a special prayer email for him so you know this already (if you'd like to be on that list, let me know). Towards the end of April, Gaige went into what they call 'crisis'. While his autism issues are hard to deal with on a daily basis, this was much more than that. We realized that he had become increasingly more easily upset and unreasonable for the past few weeks and were really having a hard time keeping him and others safe during outbursts. On April 26th, he ran away! When anyone tried to approach him he would try to hurt them, even throwing a brick at Fred (thankfully, he missed). We were very fortunate to have our 12 yo neighbor Rianna here...she tracked Gaige with her cell phone, while I loaded the other two in the car...called Fred and eventually the police. Fred found us before the police did and was able to corner him. The police then transported them to the hospital for crisis evaluation.

Because of the escalations and crisis events earlier that week, we had already had crisis team out and heard our options. By this time, with the running away, we really felt Gaige needed to be hospitalized until we could get him into a more stable place. We just couldn't keep him and the other kids safe when he was like this. It was an extremely hard decision for us, but I think it was a good one. Gaige spent ten days at the psychiatric hospital on a special ward for kids age 4-12. They were able to adjust his medication and do some lab work...make a referral to a neurologist and do a psych test we have needed to get more services. Unfortunately, they diagnosed him with mood-disorder NOS while he was there and told us this was generally thought to be Bi-Polar in children but they don't like to make that specific diagnosis at this age. Honestly, this news is very heartbreaking for us because its a very hard thing to live with.

We took him out of the hospital although he was not quite as stable as we would have liked. Had we not been going to Memphis, we would have left him in there a little longer, but we felt the pressure to continue with our plans and brought him with us. He had a very hard time the first couple days of the trip and other times that were very tense.

With school letting out on June 14th, its a real priority to figure out how to keep Gaige busy. He will continue the mentorship thing which is 6-8 hours a week with him and 4 hours a week with me. We have recently found out about the Boys and Girls Club that looks like a good match. So that's our plan as of right now. If this is not a good fit, pray God would give us wisdom to know and find something else. We are also looking for a respite worker to help out here during home times.


One more topic before I go...and thanks for hanging in there, by the way! On Saturday, it will be four years since Andrew went to live with Jesus. Although our grief has taken us to a new place...where we are comfortable with it and its like a big freckle on our arm...its always going to be there...we still have times of unexpected emotion. I can't believe its been four years since I last got to hug that big bear of a boy! I sometimes worry that I have forgotten too much of the essence of him but I am comforted that his legacy of unconditional love lives on in what he has taught us and others and in the beneficiaries of the ones who receive donations through his Life of Love Project. If you didn't already know about the LOLP, check out the website at www.LifeofLove.org and participate if you can!

We love you guys and your support of our family! Its nice to know that people care about us...many who read this have never met us in person...but we love to know you are there reading, praying and sending good wishes. God told us years ago to be mindful of the verse that says "Having done all, STAND" and we are standing during this season and know you are standing with us! As always, we'd love to hear from you...sign the guestbook, if you please!

love
deb for the gang!

Tuesday, May 1, 2007 3:38 PM CDT

Hi everyone...

April was a very exhausting month in every way...physically, emotionally and financially. We are happy to see the first day of May and finally see the forsythia blooming which has long been the first sign of spring for us in Memphis...even though it bloomed in February versus just now in Maine.

True has been doing well! It took him over a week to get his energy back after the hospitalization but he's as exuberant as ever! His asthma has been flaring some for the past week...probably allergy-related and he gets super winded when he's doing his usual running around! Since September he has been in the 26 to almost-27 pound range and he has finally gotten to 27.2! We are pretty excited and I guess the new meds for his emptying are making him hungry which is great! Now the challenge is what to feed someone who can only eat five foods!

Bliss had a wonderful birthday with a High School Musical themed-party. I will have to get some pictures up soon...it was cute. We had a big storm her and lost power for days...got it back less than 24 hours before the party but we *surged* onward! She just sparkles and we are blessed to have her!

Gaige has not been doing well...for the past few weeks he has been on the edge all the time. We explained this, at first, by True's hospitalizations, spring break (which is change of routine) and the lights being out for days...but eventually we came to see this was above and beyond what is normal for him. He was also becoming more agressive and beyond what I could manage. Last Thursday, we know that during at least a 20 minute period, he was in an altered state...not responsive, flat and dazed. We are now concerned about something unusual going on with his brain. Later Thursday, he misinterpreted yet another social situation, which is often the trigger for his meltdowns these days. He ended up running away. Thankfully, our twelve year neighbor was able to follow behind and call me on her cell phone while I packed up the kids and drove to them. Fred came from work and was finally able to get him right before the police came. He doesn't remember any of the incident.

There is, of course, a lot more to it than this. We made the hardest decision and put him in a psychiatric care hospital for children. He has been doing well. We are increasing his medication as we discovered he is undermedicated for his size. They are also doing a couple of evaluations we were trying to get done in order to get him more services. They will be calling the neurologist and discussing his case and either doing studies immediately or at least getting us an appointment after he is home. We just want to help him feel better.

I am able to go up and visit him after lunch each day and Fred goes on his way home from work. He can't handle us being there too long because they keep them really busy and have a rule if your family is there, you can't do the fun stuff...which for a kid who loves routine, its disruptive to him. Because we understand him, our feelings are not hurt! We are sending out nightly updates on him privately, if you are interested in getting them, email me.

One other bit of news, despite all the rigamarole (sp?) of this month, we are attempting to do the Life of Love Project in honor of Andrew again. Check out his website at www.LifeofLove.org and try to participate in your city.

thanks!
deb for the gang!

Tuesday, April 10, 2007 8:16 PM CDT

We are Home!!! We just arrived at 9pm! We are very happy to be here! I am very happy not to have to sleep in one position! ha!

Oh...and have a bath...and shave my legs...you know, the little things in life.

True didn't eat super today but definitely seems better and no hint of vomiting! We started him on his new med a couple hours before we left...having to give him injectible medicine for his motility, but he is taking is by mouth. We had to do the first dose at the hospital in case he was allergic to it. He wasn't!

The medication will take 2-3 months to actually make a difference so we'll see how that goes. As long as he doesn't vomit, its okay but they expect he might. The problem with that being b/c of the possible metabolic disorder, vomiting is a big problem in that regard...so that could be bad for him...so pray we have no vomit...we didn't have any two weeks ago and hopefully we wont have any now. We actually think the second bout of vomiting was likely a virus he caught from the hospital, but at least we found out about the emptying problem now, otherwise we wouldn't have known.

Thanks for all the prayers and notes...and other gestures (like kim and melissa bringing lunch to me a couple times).

As always, we love hearing from you...
deb for the gang

Monday, April 9, 2007 8:49 PM CDT

Hello everyone!

I can't believe its almost 10pm already!

True was worrying both the attending and I this morning with a very sluggish and zapped demeanor but after he got ticked off during his scan, he snapped out of it! Go figure.

We found something! True had a gastric emptying scan today to see how well his stomach is emptying. They made him drink radioactive dye and then had him lie on his back for 4 minutes and then his stomach for 2.5 minutes immediately after drinking it...you would think we were torturing him! They repeat the process (minus the dye)after an hour and an hour and a half.

For babies, they put the dye in formula and for anyone older you can choose scrambled eggs or oatmeal to eat. Since 2 of True's eleven allergies are oats and eggs, we were just able to assess him on formula.

For food...for you and I...after an hour and a half, over 50% of the food has moved on...but for True, just on formula alone, it had only moved 21%. Imagine what his table food is doing? This means that his meals are staying an average of 6-8 hours in his stomach...can you imagine?

So, they diagnosed it as significant gut dysmotility. He will start a medicine tomorrow (so we can call the manufacturer and see about possible allergens) to improve motility. They are also going to put him back on reflux meds, even though we aren't sure he needs them...anything to keep food down at this point.

True did eat some after the scan and has kept it down thus far. He will be weaned off the IV tomorrow and if he will eat and not vomit, then we might get to go home tomorrow night. I imagine for sure by Wednesday. While this is a problem that True has probably dealt with for a while (he had the same scan at 6 months old and it was fine), it was exacerbated by the cold and he likely also got gastroenteritis this second time.

So at least an end in sight. Not sure where that leaves the metabolic stuff...much of it wont be in until the end of this week and some even later. If it shows nothing then the plan is to go to Boston for the fasting study.

Thanks for the prayers and guestbook entries! I'll post tomorrow when I can.

deb for the gang

Sunday, April 8, 2007 8:41 PM CDT

Good evening everyone...

I just want to say again what a bright spot it has been to read your emails and guestbook messages...we so appreciate it!

True did eat a little today...very little and unfortunately Uncle Ben and Aunt Kim got to see it come back up during their visit. He is now vomiting bile with it.

So the line had to go back in and after FIVE tries...again...poor guy...they finally got it. I just now got him calmed down and to sleep.

The plan is to let GI check him in the morning and he is not to eat anything after midnight (as if he would) tonight so if they need to do tests or procedures tomorrow, they will be able to run with it. The residents have wondered about trying an NG tube down his nose into his stomach but he might still possibly vomit so it would be good to know what is causing this first.

Thankfully, the chief peds resident on call every night this comign week just came and introduced herself. I am thankful for continuity of care since this weekend we have had umpteen residents covering for the holiday. I am also looking forward to any ideas that our metabolic specialist in Boston and our local GI doc come up with. This little guy needs to eat and hold it down and get well!

Just pray tomorrow specifically for guidance...and for Fred and the kids at home, too. He's handling it well but its hard when your whole family is not together.

sign our guestbook if you'd like...we like you to!
deb for the gang




Sunday, April 8, 2007 1:37 PM CDT

Good Easter Morning!

Thanks for those of you who started praying...within an hour his lungs cleared and I'll take that as our Easter Miracle, thank you (God) very much!

He continued to throw up in the night, even though he ate so little yesterday. We didn't get a whole lot of sleep which is why i never got back over to update until now...nap time!

His IV line closed this morning so we decided we would take him off since he had eaten a little by mouth and see if he keeps it down. If he does, then we probably wont need the IV and if he throws up, it goes right back in! He's eaten a half a banana, a few (safe) chips and about 4 ounces of formula and hadn't thrown up by the time he fell asleep.

He is definitely staying again over night...after having to return so quickly last time, we are in no hurry and want to make sure he is better. He is active a good bit of the time but this comes and goes and has all week.

The plan is to consult with his normal GI doc in the morning and I am sure they will consult Dr Korson, as well. If he doesn't throw up again and seems to be improving then I imagine we would get discharged late tomorow.

Happy Easter to you!
deb for the gang!

Saturday, April 7, 2007 8:33 PM CDT

thought I would update where we are now...

True finally got an appetite when a kind lady (with a son here) offered him an organic pear...he ate about four bite. I was able to get a baked potato in but he still wanted nothing liquid. Finally, around 7p tonight he decided to try some formula...and ate a little over an ounce. Thirty minutes later, he threw up the formula and the potato, to be sure.

He was still chipper despite throwing up which is definitely different than yesterday. Aunt Kim (my brother's soon-to-be-wife) and my sweet friend Teresa came up and he was interactive and charming. But only eating 100 of his usual 1200-1300 calories...and then throwing that up.

When the new nurse came on around 8...he noted that True's lungs, which had been crystal clear this whole week despite the asthma, no longer are clear. He is not wheezing so its not the asthma, this is not good news. His temperature, while no longer cold, is now starting to inch up. It appears he may be getting pneumonia. His night nurse promised to watch him extra close and we talked that he may need a chest xray and labs done tonight to see if an infection is showing up.

Please pray...True's system has already been through so much this week, I am not sure how it will affect him and since no one here understands much about his potential diagnosis, it will be hard for them to know what to do next. Also, because of True's food allergies, medicating him is a challenge.

Thanks so much for your notes! I have the phone number wrong but don't have time to change it right now...its 207.662.7769

deb for the gang

Saturday, April 7, 2007 1:08 PM CDT

Well...weekend at the hospital go at a Turtle's pace and HOLIDAY weekends, at a snails pace!

True is refusing to eat by mouth, except for ice. I think I mentioned that all the labs we get back right away (versus a week to a month) are better than earlier in the week...and normal, which makes everything simply puzzling! He looks better so the D10 is accomplishing something, but we still dont' know why he needs it unless there is a metabolic disease to be found.

We decreased the flow of the D10 a couple of hours ago to see if he will eat by mouth, but so far nothing. He's napping now so I snuck away to the parents lounge.

We are definitely here another night and the attending is toying with running some GI scans on Monday and consulting with his GI docs to make sure we aren't so distracted by the metabolic stuff that we are mising something else. So we may be here into next week.

I just want to make sure he is eating well before we leave, so we aren't back. Part of me wonders if this happens again, if we shouldn't just try to get to Boston so our doctor can try to figure this out himself, first hand. I know, though, as bad as he was last night when I brought him in that he wouldn't have made it to Boston without intervention. Just pray for wisdom and that we aren't rushed home just for the sake of needing a bed or because of insurance junk...we need him to be well and be able to stay well until whatever is causing this rears its head so we can treat it.

thanks for all your messages...they really mean a lot, especially living in a new town and not having visitors like we did in Memphis. If you are in Maine and bored, visit us!

thanks
and love...
deb for the gang

ps...I left last nights post so you can read the whole story.


Friday, April 6, 2007 11:41 PM CDT

We are finally settled in a room and True is sleepign for the moment...hopefully! I am in the Parents Lounge and taking a moment to thank all of you who emailed or signed our page...we are thankful to feel your love through those things.

Let me start more towards the beginning and try to be brief. The older two got a cold about ten days ago and still were able to play outside all last weekend. True got it last Friday it hit him much harder. We started our asthma protocol and more vigilant feeding through the night and so forth. But by Sunday, he was vomiting at times and his fever was up to 104.

When you live with a metabolic disease, you go to the hospital at the first sign of trouble...fever, vomiting, lethargy, refusal of feeds or hypoglycemia and are treated with a special sugar IV after some specialized labs are drawn. When you live with a possible/unspecified metabolic disease, you have to go to the hospital when they are sick to get the labs, in hopes of ruling in or out a metabolic disease and hopefully find out which kind. So Sunday morning we went to the hospital to get 'sick labs'. We were discharged after they were done without getting the IV b/c he was still eating okay.

Monday morning he seemed a little better but started throwing up every time he ate, shortly after coughing. Because kids with his myriad of suspicious (metabolic) symptoms can't go more than a few hours without feeding, they can't tolerate vomiting at all. So back to the ER we went.

The nurse who had us the night before noticed a change in him and took excellent care of us...we love Heather! I had called his metabolic specialist in Boston and our pediatric service and they both thought he needed to be admitted and get those important fluids overnight.

The next day he just did not eat enough to be able to turn off the IV so we stayed another night. The IV was turned off early Wednesday morning and he started eating. Sure enough, he coughed and threw it all up. I asked the attendings to try to treat the cough and suggested we put True back on his thickener to see if that helped it stay down. The cough treatment was a task...after about 6 hours they figured that they could give True injectable codene by mouth to soothe the cough because of hsi allergies, medicating him is quite complicated. We were discharged at 6:30p that evening, in the middle of a freak April snowstorm that dumped 8 inches of gorgeous snow in Portland...so this southerner had to drive home...and let me just say that the hospital is built on top of a hill, but we made it.

True seemed a little better and no vomit Thursday. By this morning I barely heard him cough and decided I would try no codene and keep thickened feeds and see how he did. He was almost back to his normal self this morning.

I went in to get him up from nap and he was standing up in his bed with these huge glassy eyes...I asked if he was okay and looked down to see he had vomited everything he ate up until nap. We went to get the kids from school and he vomited on me and a teachers shoes. We got home and luckily, Katie, Gaige's behavior worker was there and was able to keep Gaige and Bliss busy while I called doctors and backed a bag. True continued to vomit and look worse and worse.

By the time we got to the hospital, which is only FOUR minutes from our house, he was having a hard time staying awake, his temp was only 96 degrees and his heart rate was 83 (normal for him is 120-130 earlier this week). Heather, our sweet nurse, came right out when she saw his name pop up and took us straight to trauma, she knew him and knew he didn't look good.

The sicker he is, the more he needs the labs and IVs, the harder stick he is...after five attempts they finally got a vien. By this time he was sleeping between sticks and being catherterized.

The residents (not my fave people this week) was questioning everything in True's ER protocol that our Boston doc had written but he was so sick and I told her she was making him sicker by delaying the IV...whcih has to be specially made in the pharmacy. She decided to just hang saline and you can guess he didn't get better. Finally we got on the D10 and after two hours, he came around.

He isn't back to himself. Oddly enough, his labs that are back already, are more normal than they were earlier in the week. The telling 'sick labs' go to Mayo and wont start trickling in til Monday, since they were done Sunday, Monday and tonight and some can take up to a month to get back. Dr Korson hopes that they tell us something but they have to be done in a very particular way and its hard to know if they were. As I have mentioned before he wants to do a fasting study in his ICU at his hospital because he knows everything is done right at his place...and we will still do this if we dont' get answers from these labs.

I have to tell you, I was on the verge of tears in the trauma unit and its so scary to think that he can get that sick in two hours and no one knows why.

He is a little more interactive than earlier but still cold and the heartrate was normal when they took it a few minutes ago, so that is a blessing and I am sure, due to your prayers.

Please pray for Answers and if we are missing something because we are so busy looking for metabolic disease, then pray for wisdom.

If True can hold down his feeds after they turn off the IVs tomorrow then we should get to go home tomorrow afternoon. Poor Bliss asked me today when she could be sick so she could spend some alone time wth me, so pray for her. I told Gaige, who was worried about our annual saturday-before-easter egg hunt that we would do it in True's room if we had to...and pray for Fred as he copes at home.

Please let us hear from you! We would love to!

deb for the gang

Sunday, April 8, 2007 12:37 AM CDT

Good Easter Morning!

Thanks for those of you who started praying...within an hour his lungs cleared and I'll take that as our Easter Miracle, thank you (God) very much!

He continued to throw up in the night, even though he ate so little yesterday. We didn't get a whole lot of sleep which is why i never got back over to update until now...nap time!

His IV line closed this morning so we decided we would take him off since he had eaten a little by mouth and see if he keeps it down. If he does, then we probably wont need the IV and if he throws up, it goes right back in! He's eaten a half a banana, a few (safe) chips and about 4 ounces of formula and hadn't thrown up by the time he fell asleep.

He is definitely staying again over night...after having to return so quickly last time, we are in no hurry and want to make sure he is better. He is active a good bit of the time but this comes and goes and has all week.

The plan is to consult with his normal GI doc in the morning and I am sure they will consult Dr Korson, as well. If he doesn't throw up again and seems to be improving then I imagine we would get discharged late tomorow.

Happy Easter to you!
deb for the gang!

Saturday, April 7, 2007 8:33 PM CDT

thought I would update where we are now...

True finally got an appetite when a kind lady (with a son here) offered him an organic pear...he ate about four bite. I was able to get a baked potato in but he still wanted nothing liquid. Finally, around 7p tonight he decided to try some formula...and ate a little over an ounce. Thirty minutes later, he threw up the formula and the potato, to be sure.

He was still chipper despite throwing up which is definitely different than yesterday. Aunt Kim (my brother's soon-to-be-wife) and my sweet friend Teresa came up and he was interactive and charming. But only eating 100 of his usual 1200-1300 calories...and then throwing that up.

When the new nurse came on around 8...he noted that True's lungs, which had been crystal clear this whole week despite the asthma, no longer are clear. He is not wheezing so its not the asthma, this is not good news. His temperature, while no longer cold, is now starting to inch up. It appears he may be getting pneumonia. His night nurse promised to watch him extra close and we talked that he may need a chest xray and labs done tonight to see if an infection is showing up.

Please pray...True's system has already been through so much this week, I am not sure how it will affect him and since no one here understands much about his potential diagnosis, it will be hard for them to know what to do next. Also, because of True's food allergies, medicating him is a challenge.

Thanks so much for your notes! I have the phone number wrong but don't have time to change it right now...its 207.662.7769

deb for the gang

Saturday, April 7, 2007 1:08 PM CDT

Well...weekend at the hospital go at a Turtle's pace and HOLIDAY weekends, at a snails pace!

True is refusing to eat by mouth, except for ice. I think I mentioned that all the labs we get back right away (versus a week to a month) are better than earlier in the week...and normal, which makes everything simply puzzling! He looks better so the D10 is accomplishing something, but we still dont' know why he needs it unless there is a metabolic disease to be found.

We decreased the flow of the D10 a couple of hours ago to see if he will eat by mouth, but so far nothing. He's napping now so I snuck away to the parents lounge.

We are definitely here another night and the attending is toying with running some GI scans on Monday and consulting with his GI docs to make sure we aren't so distracted by the metabolic stuff that we are mising something else. So we may be here into next week.

I just want to make sure he is eating well before we leave, so we aren't back. Part of me wonders if this happens again, if we shouldn't just try to get to Boston so our doctor can try to figure this out himself, first hand. I know, though, as bad as he was last night when I brought him in that he wouldn't have made it to Boston without intervention. Just pray for wisdom and that we aren't rushed home just for the sake of needing a bed or because of insurance junk...we need him to be well and be able to stay well until whatever is causing this rears its head so we can treat it.

thanks for all your messages...they really mean a lot, especially living in a new town and not having visitors like we did in Memphis. If you are in Maine and bored, visit us!

thanks
and love...
deb for the gang

ps...I left last nights post so you can read the whole story.


Friday, April 6, 2007 11:41 PM CDT

We are finally settled in a room and True is sleepign for the moment...hopefully! I am in the Parents Lounge and taking a moment to thank all of you who emailed or signed our page...we are thankful to feel your love through those things.

Let me start more towards the beginning and try to be brief. The older two got a cold about ten days ago and still were able to play outside all last weekend. True got it last Friday it hit him much harder. We started our asthma protocol and more vigilant feeding through the night and so forth. But by Sunday, he was vomiting at times and his fever was up to 104.

When you live with a metabolic disease, you go to the hospital at the first sign of trouble...fever, vomiting, lethargy, refusal of feeds or hypoglycemia and are treated with a special sugar IV after some specialized labs are drawn. When you live with a possible/unspecified metabolic disease, you have to go to the hospital when they are sick to get the labs, in hopes of ruling in or out a metabolic disease and hopefully find out which kind. So Sunday morning we went to the hospital to get 'sick labs'. We were discharged after they were done without getting the IV b/c he was still eating okay.

Monday morning he seemed a little better but started throwing up every time he ate, shortly after coughing. Because kids with his myriad of suspicious (metabolic) symptoms can't go more than a few hours without feeding, they can't tolerate vomiting at all. So back to the ER we went.

The nurse who had us the night before noticed a change in him and took excellent care of us...we love Heather! I had called his metabolic specialist in Boston and our pediatric service and they both thought he needed to be admitted and get those important fluids overnight.

The next day he just did not eat enough to be able to turn off the IV so we stayed another night. The IV was turned off early Wednesday morning and he started eating. Sure enough, he coughed and threw it all up. I asked the attendings to try to treat the cough and suggested we put True back on his thickener to see if that helped it stay down. The cough treatment was a task...after about 6 hours they figured that they could give True injectable codene by mouth to soothe the cough because of hsi allergies, medicating him is quite complicated. We were discharged at 6:30p that evening, in the middle of a freak April snowstorm that dumped 8 inches of gorgeous snow in Portland...so this southerner had to drive home...and let me just say that the hospital is built on top of a hill, but we made it.

True seemed a little better and no vomit Thursday. By this morning I barely heard him cough and decided I would try no codene and keep thickened feeds and see how he did. He was almost back to his normal self this morning.

I went in to get him up from nap and he was standing up in his bed with these huge glassy eyes...I asked if he was okay and looked down to see he had vomited everything he ate up until nap. We went to get the kids from school and he vomited on me and a teachers shoes. We got home and luckily, Katie, Gaige's behavior worker was there and was able to keep Gaige and Bliss busy while I called doctors and backed a bag. True continued to vomit and look worse and worse.

By the time we got to the hospital, which is only FOUR minutes from our house, he was having a hard time staying awake, his temp was only 96 degrees and his heart rate was 83 (normal for him is 120-130 earlier this week). Heather, our sweet nurse, came right out when she saw his name pop up and took us straight to trauma, she knew him and knew he didn't look good.

The sicker he is, the more he needs the labs and IVs, the harder stick he is...after five attempts they finally got a vien. By this time he was sleeping between sticks and being catherterized.

The residents (not my fave people this week) was questioning everything in True's ER protocol that our Boston doc had written but he was so sick and I told her she was making him sicker by delaying the IV...whcih has to be specially made in the pharmacy. She decided to just hang saline and you can guess he didn't get better. Finally we got on the D10 and after two hours, he came around.

He isn't back to himself. Oddly enough, his labs that are back already, are more normal than they were earlier in the week. The telling 'sick labs' go to Mayo and wont start trickling in til Monday, since they were done Sunday, Monday and tonight and some can take up to a month to get back. Dr Korson hopes that they tell us something but they have to be done in a very particular way and its hard to know if they were. As I have mentioned before he wants to do a fasting study in his ICU at his hospital because he knows everything is done right at his place...and we will still do this if we dont' get answers from these labs.

I have to tell you, I was on the verge of tears in the trauma unit and its so scary to think that he can get that sick in two hours and no one knows why.

He is a little more interactive than earlier but still cold and the heartrate was normal when they took it a few minutes ago, so that is a blessing and I am sure, due to your prayers.

Please pray for Answers and if we are missing something because we are so busy looking for metabolic disease, then pray for wisdom.

If True can hold down his feeds after they turn off the IVs tomorrow then we should get to go home tomorrow afternoon. Poor Bliss asked me today when she could be sick so she could spend some alone time wth me, so pray for her. I told Gaige, who was worried about our annual saturday-before-easter egg hunt that we would do it in True's room if we had to...and pray for Fred as he copes at home.

Please let us hear from you! We would love to!

deb for the gang

Saturday, April 7, 2007 8:33 PM CDT

thought I would update where we are now...

True finally got an appetite when a kind lady (with a son here) offered him an organic pear...he ate about four bite. I was able to get a baked potato in but he still wanted nothing liquid. Finally, around 7p tonight he decided to try some formula...and ate a little over an ounce. Thirty minutes later, he threw up the formula and the potato, to be sure.

He was still chipper despite throwing up which is definitely different than yesterday. Aunt Kim (my brother's soon-to-be-wife) and my sweet friend Teresa came up and he was interactive and charming. But only eating 100 of his usual 1200-1300 calories...and then throwing that up.

When the new nurse came on around 8...he noted that True's lungs, which had been crystal clear this whole week despite the asthma, no longer are clear. He is not wheezing so its not the asthma, this is not good news. His temperature, while no longer cold, is now starting to inch up. It appears he may be getting pneumonia. His night nurse promised to watch him extra close and we talked that he may need a chest xray and labs done tonight to see if an infection is showing up.

Please pray...True's system has already been through so much this week, I am not sure how it will affect him and since no one here understands much about his potential diagnosis, it will be hard for them to know what to do next. Also, because of True's food allergies, medicating him is a challenge.

Thanks so much for your notes! I have the phone number wrong but don't have time to change it right now...its 207.662.7769

deb for the gang

Saturday, April 7, 2007 1:08 PM CDT

Well...weekend at the hospital go at a Turtle's pace and HOLIDAY weekends, at a snails pace!

True is refusing to eat by mouth, except for ice. I think I mentioned that all the labs we get back right away (versus a week to a month) are better than earlier in the week...and normal, which makes everything simply puzzling! He looks better so the D10 is accomplishing something, but we still dont' know why he needs it unless there is a metabolic disease to be found.

We decreased the flow of the D10 a couple of hours ago to see if he will eat by mouth, but so far nothing. He's napping now so I snuck away to the parents lounge.

We are definitely here another night and the attending is toying with running some GI scans on Monday and consulting with his GI docs to make sure we aren't so distracted by the metabolic stuff that we are mising something else. So we may be here into next week.

I just want to make sure he is eating well before we leave, so we aren't back. Part of me wonders if this happens again, if we shouldn't just try to get to Boston so our doctor can try to figure this out himself, first hand. I know, though, as bad as he was last night when I brought him in that he wouldn't have made it to Boston without intervention. Just pray for wisdom and that we aren't rushed home just for the sake of needing a bed or because of insurance junk...we need him to be well and be able to stay well until whatever is causing this rears its head so we can treat it.

thanks for all your messages...they really mean a lot, especially living in a new town and not having visitors like we did in Memphis. If you are in Maine and bored, visit us!

thanks
and love...
deb for the gang

ps...I left last nights post so you can read the whole story.


Friday, April 6, 2007 11:41 PM CDT

We are finally settled in a room and True is sleepign for the moment...hopefully! I am in the Parents Lounge and taking a moment to thank all of you who emailed or signed our page...we are thankful to feel your love through those things.

Let me start more towards the beginning and try to be brief. The older two got a cold about ten days ago and still were able to play outside all last weekend. True got it last Friday it hit him much harder. We started our asthma protocol and more vigilant feeding through the night and so forth. But by Sunday, he was vomiting at times and his fever was up to 104.

When you live with a metabolic disease, you go to the hospital at the first sign of trouble...fever, vomiting, lethargy, refusal of feeds or hypoglycemia and are treated with a special sugar IV after some specialized labs are drawn. When you live with a possible/unspecified metabolic disease, you have to go to the hospital when they are sick to get the labs, in hopes of ruling in or out a metabolic disease and hopefully find out which kind. So Sunday morning we went to the hospital to get 'sick labs'. We were discharged after they were done without getting the IV b/c he was still eating okay.

Monday morning he seemed a little better but started throwing up every time he ate, shortly after coughing. Because kids with his myriad of suspicious (metabolic) symptoms can't go more than a few hours without feeding, they can't tolerate vomiting at all. So back to the ER we went.

The nurse who had us the night before noticed a change in him and took excellent care of us...we love Heather! I had called his metabolic specialist in Boston and our pediatric service and they both thought he needed to be admitted and get those important fluids overnight.

The next day he just did not eat enough to be able to turn off the IV so we stayed another night. The IV was turned off early Wednesday morning and he started eating. Sure enough, he coughed and threw it all up. I asked the attendings to try to treat the cough and suggested we put True back on his thickener to see if that helped it stay down. The cough treatment was a task...after about 6 hours they figured that they could give True injectable codene by mouth to soothe the cough because of hsi allergies, medicating him is quite complicated. We were discharged at 6:30p that evening, in the middle of a freak April snowstorm that dumped 8 inches of gorgeous snow in Portland...so this southerner had to drive home...and let me just say that the hospital is built on top of a hill, but we made it.

True seemed a little better and no vomit Thursday. By this morning I barely heard him cough and decided I would try no codene and keep thickened feeds and see how he did. He was almost back to his normal self this morning.

I went in to get him up from nap and he was standing up in his bed with these huge glassy eyes...I asked if he was okay and looked down to see he had vomited everything he ate up until nap. We went to get the kids from school and he vomited on me and a teachers shoes. We got home and luckily, Katie, Gaige's behavior worker was there and was able to keep Gaige and Bliss busy while I called doctors and backed a bag. True continued to vomit and look worse and worse.

By the time we got to the hospital, which is only FOUR minutes from our house, he was having a hard time staying awake, his temp was only 96 degrees and his heart rate was 83 (normal for him is 120-130 earlier this week). Heather, our sweet nurse, came right out when she saw his name pop up and took us straight to trauma, she knew him and knew he didn't look good.

The sicker he is, the more he needs the labs and IVs, the harder stick he is...after five attempts they finally got a vien. By this time he was sleeping between sticks and being catherterized.

The residents (not my fave people this week) was questioning everything in True's ER protocol that our Boston doc had written but he was so sick and I told her she was making him sicker by delaying the IV...whcih has to be specially made in the pharmacy. She decided to just hang saline and you can guess he didn't get better. Finally we got on the D10 and after two hours, he came around.

He isn't back to himself. Oddly enough, his labs that are back already, are more normal than they were earlier in the week. The telling 'sick labs' go to Mayo and wont start trickling in til Monday, since they were done Sunday, Monday and tonight and some can take up to a month to get back. Dr Korson hopes that they tell us something but they have to be done in a very particular way and its hard to know if they were. As I have mentioned before he wants to do a fasting study in his ICU at his hospital because he knows everything is done right at his place...and we will still do this if we dont' get answers from these labs.

I have to tell you, I was on the verge of tears in the trauma unit and its so scary to think that he can get that sick in two hours and no one knows why.

He is a little more interactive than earlier but still cold and the heartrate was normal when they took it a few minutes ago, so that is a blessing and I am sure, due to your prayers.

Please pray for Answers and if we are missing something because we are so busy looking for metabolic disease, then pray for wisdom.

If True can hold down his feeds after they turn off the IVs tomorrow then we should get to go home tomorrow afternoon. Poor Bliss asked me today when she could be sick so she could spend some alone time wth me, so pray for her. I told Gaige, who was worried about our annual saturday-before-easter egg hunt that we would do it in True's room if we had to...and pray for Fred as he copes at home.

Please let us hear from you! We would love to!

deb for the gang

Saturday, April 7, 2007 1:08 PM CDT

Well...weekend at the hospital go at a Turtle's pace and HOLIDAY weekends, at a snails pace!

True is refusing to eat by mouth, except for ice. I think I mentioned that all the labs we get back right away (versus a week to a month) are better than earlier in the week...and normal, which makes everything simply puzzling! He looks better so the D10 is accomplishing something, but we still dont' know why he needs it unless there is a metabolic disease to be found.

We decreased the flow of the D10 a couple of hours ago to see if he will eat by mouth, but so far nothing. He's napping now so I snuck away to the parents lounge.

We are definitely here another night and the attending is toying with running some GI scans on Monday and consulting with his GI docs to make sure we aren't so distracted by the metabolic stuff that we are mising something else. So we may be here into next week.

I just want to make sure he is eating well before we leave, so we aren't back. Part of me wonders if this happens again, if we shouldn't just try to get to Boston so our doctor can try to figure this out himself, first hand. I know, though, as bad as he was last night when I brought him in that he wouldn't have made it to Boston without intervention. Just pray for wisdom and that we aren't rushed home just for the sake of needing a bed or because of insurance junk...we need him to be well and be able to stay well until whatever is causing this rears its head so we can treat it.

thanks for all your messages...they really mean a lot, especially living in a new town and not having visitors like we did in Memphis. If you are in Maine and bored, visit us!

thanks
and love...
deb for the gang

ps...I left last nights post so you can read the whole story.


Friday, April 6, 2007 11:41 PM CDT

We are finally settled in a room and True is sleepign for the moment...hopefully! I am in the Parents Lounge and taking a moment to thank all of you who emailed or signed our page...we are thankful to feel your love through those things.

Let me start more towards the beginning and try to be brief. The older two got a cold about ten days ago and still were able to play outside all last weekend. True got it last Friday it hit him much harder. We started our asthma protocol and more vigilant feeding through the night and so forth. But by Sunday, he was vomiting at times and his fever was up to 104.

When you live with a metabolic disease, you go to the hospital at the first sign of trouble...fever, vomiting, lethargy, refusal of feeds or hypoglycemia and are treated with a special sugar IV after some specialized labs are drawn. When you live with a possible/unspecified metabolic disease, you have to go to the hospital when they are sick to get the labs, in hopes of ruling in or out a metabolic disease and hopefully find out which kind. So Sunday morning we went to the hospital to get 'sick labs'. We were discharged after they were done without getting the IV b/c he was still eating okay.

Monday morning he seemed a little better but started throwing up every time he ate, shortly after coughing. Because kids with his myriad of suspicious (metabolic) symptoms can't go more than a few hours without feeding, they can't tolerate vomiting at all. So back to the ER we went.

The nurse who had us the night before noticed a change in him and took excellent care of us...we love Heather! I had called his metabolic specialist in Boston and our pediatric service and they both thought he needed to be admitted and get those important fluids overnight.

The next day he just did not eat enough to be able to turn off the IV so we stayed another night. The IV was turned off early Wednesday morning and he started eating. Sure enough, he coughed and threw it all up. I asked the attendings to try to treat the cough and suggested we put True back on his thickener to see if that helped it stay down. The cough treatment was a task...after about 6 hours they figured that they could give True injectable codene by mouth to soothe the cough because of hsi allergies, medicating him is quite complicated. We were discharged at 6:30p that evening, in the middle of a freak April snowstorm that dumped 8 inches of gorgeous snow in Portland...so this southerner had to drive home...and let me just say that the hospital is built on top of a hill, but we made it.

True seemed a little better and no vomit Thursday. By this morning I barely heard him cough and decided I would try no codene and keep thickened feeds and see how he did. He was almost back to his normal self this morning.

I went in to get him up from nap and he was standing up in his bed with these huge glassy eyes...I asked if he was okay and looked down to see he had vomited everything he ate up until nap. We went to get the kids from school and he vomited on me and a teachers shoes. We got home and luckily, Katie, Gaige's behavior worker was there and was able to keep Gaige and Bliss busy while I called doctors and backed a bag. True continued to vomit and look worse and worse.

By the time we got to the hospital, which is only FOUR minutes from our house, he was having a hard time staying awake, his temp was only 96 degrees and his heart rate was 83 (normal for him is 120-130 earlier this week). Heather, our sweet nurse, came right out when she saw his name pop up and took us straight to trauma, she knew him and knew he didn't look good.

The sicker he is, the more he needs the labs and IVs, the harder stick he is...after five attempts they finally got a vien. By this time he was sleeping between sticks and being catherterized.

The residents (not my fave people this week) was questioning everything in True's ER protocol that our Boston doc had written but he was so sick and I told her she was making him sicker by delaying the IV...whcih has to be specially made in the pharmacy. She decided to just hang saline and you can guess he didn't get better. Finally we got on the D10 and after two hours, he came around.

He isn't back to himself. Oddly enough, his labs that are back already, are more normal than they were earlier in the week. The telling 'sick labs' go to Mayo and wont start trickling in til Monday, since they were done Sunday, Monday and tonight and some can take up to a month to get back. Dr Korson hopes that they tell us something but they have to be done in a very particular way and its hard to know if they were. As I have mentioned before he wants to do a fasting study in his ICU at his hospital because he knows everything is done right at his place...and we will still do this if we dont' get answers from these labs.

I have to tell you, I was on the verge of tears in the trauma unit and its so scary to think that he can get that sick in two hours and no one knows why.

He is a little more interactive than earlier but still cold and the heartrate was normal when they took it a few minutes ago, so that is a blessing and I am sure, due to your prayers.

Please pray for Answers and if we are missing something because we are so busy looking for metabolic disease, then pray for wisdom.

If True can hold down his feeds after they turn off the IVs tomorrow then we should get to go home tomorrow afternoon. Poor Bliss asked me today when she could be sick so she could spend some alone time wth me, so pray for her. I told Gaige, who was worried about our annual saturday-before-easter egg hunt that we would do it in True's room if we had to...and pray for Fred as he copes at home.

Please let us hear from you! We would love to!

deb for the gang

Friday, April 6, 2007 11:41 PM CDT

We are finally settled in a room and True is sleepign for the moment...hopefully! I am in the Parents Lounge and taking a moment to thank all of you who emailed or signed our page...we are thankful to feel your love through those things.

Let me start more towards the beginning and try to be brief. The older two got a cold about ten days ago and still were able to play outside all last weekend. True got it last Friday it hit him much harder. We started our asthma protocol and more vigilant feeding through the night and so forth. But by Sunday, he was vomiting at times and his fever was up to 104.

When you live with a metabolic disease, you go to the hospital at the first sign of trouble...fever, vomiting, lethargy, refusal of feeds or hypoglycemia and are treated with a special sugar IV after some specialized labs are drawn. When you live with a possible/unspecified metabolic disease, you have to go to the hospital when they are sick to get the labs, in hopes of ruling in or out a metabolic disease and hopefully find out which kind. So Sunday morning we went to the hospital to get 'sick labs'. We were discharged after they were done without getting the IV b/c he was still eating okay.

Monday morning he seemed a little better but started throwing up every time he ate, shortly after coughing. Because kids with his myriad of suspicious (metabolic) symptoms can't go more than a few hours without feeding, they can't tolerate vomiting at all. So back to the ER we went.

The nurse who had us the night before noticed a change in him and took excellent care of us...we love Heather! I had called his metabolic specialist in Boston and our pediatric service and they both thought he needed to be admitted and get those important fluids overnight.

The next day he just did not eat enough to be able to turn off the IV so we stayed another night. The IV was turned off early Wednesday morning and he started eating. Sure enough, he coughed and threw it all up. I asked the attendings to try to treat the cough and suggested we put True back on his thickener to see if that helped it stay down. The cough treatment was a task...after about 6 hours they figured that they could give True injectable codene by mouth to soothe the cough because of hsi allergies, medicating him is quite complicated. We were discharged at 6:30p that evening, in the middle of a freak April snowstorm that dumped 8 inches of gorgeous snow in Portland...so this southerner had to drive home...and let me just say that the hospital is built on top of a hill, but we made it.

True seemed a little better and no vomit Thursday. By this morning I barely heard him cough and decided I would try no codene and keep thickened feeds and see how he did. He was almost back to his normal self this morning.

I went in to get him up from nap and he was standing up in his bed with these huge glassy eyes...I asked if he was okay and looked down to see he had vomited everything he ate up until nap. We went to get the kids from school and he vomited on me and a teachers shoes. We got home and luckily, Katie, Gaige's behavior worker was there and was able to keep Gaige and Bliss busy while I called doctors and backed a bag. True continued to vomit and look worse and worse.

By the time we got to the hospital, which is only FOUR minutes from our house, he was having a hard time staying awake, his temp was only 96 degrees and his heart rate was 83 (normal for him is 120-130 earlier this week). Heather, our sweet nurse, came right out when she saw his name pop up and took us straight to trauma, she knew him and knew he didn't look good.

The sicker he is, the more he needs the labs and IVs, the harder stick he is...after five attempts they finally got a vien. By this time he was sleeping between sticks and being catherterized.

The residents (not my fave people this week) was questioning everything in True's ER protocol that our Boston doc had written but he was so sick and I told her she was making him sicker by delaying the IV...whcih has to be specially made in the pharmacy. She decided to just hang saline and you can guess he didn't get better. Finally we got on the D10 and after two hours, he came around.

He isn't back to himself. Oddly enough, his labs that are back already, are more normal than they were earlier in the week. The telling 'sick labs' go to Mayo and wont start trickling in til Monday, since they were done Sunday, Monday and tonight and some can take up to a month to get back. Dr Korson hopes that they tell us something but they have to be done in a very particular way and its hard to know if they were. As I have mentioned before he wants to do a fasting study in his ICU at his hospital because he knows everything is done right at his place...and we will still do this if we dont' get answers from these labs.

I have to tell you, I was on the verge of tears in the trauma unit and its so scary to think that he can get that sick in two hours and no one knows why.

He is a little more interactive than earlier but still cold and the heartrate was normal when they took it a few minutes ago, so that is a blessing and I am sure, due to your prayers.

Please pray for Answers and if we are missing something because we are so busy looking for metabolic disease, then pray for wisdom.

If True can hold down his feeds after they turn off the IVs tomorrow then we should get to go home tomorrow afternoon. Poor Bliss asked me today when she could be sick so she could spend some alone time wth me, so pray for her. I told Gaige, who was worried about our annual saturday-before-easter egg hunt that we would do it in True's room if we had to...and pray for Fred as he copes at home.

Please let us hear from you! We would love to!

deb for the gang

Tuesday, April 3, 2007 9:26 PM CDT

Hi everyone

Don't have much time but we are in the process of spending our second night in the hospital with True. His body just did not cope well with a cold that the older two did just fine with...another metabolic crash. We got some good labs, we think and will get them back in about a week.

True is resting after getting hyped up on asthma medicine and I just wanted to let people to know to pray for he and I but also Fred and the other two kiddos.

We should be going home tomorrow by lunch...unless something unforseen were to happen. I'll try to update soon, especially after we get all the results in.

Thanks
deb for the gang!

Tuesday, March 27, 2007 8:06 AM CDT

Well its be awhile, eh?

Spring is finally starting to peak out around here. We are digging through summer clothes with temps in the 40s...but in Memphis, we called that "WINTER"! Funny how your perspective changes! We are looking forward to the days at the beach ahead...and the visitors that are planning to enjoy some Maine vacationland!

Gaige's tests did not tell us everything we had hoped...so now we have new tests to get next time he vomits or gets a cold. If those don't reveal anything, then its likely he doesn't have a metabolic disease, although his specialist says we will never know for 100ertainty if he does not have one.

Today, Gaige meets his mentor. He is very excited about it. His behavior specialist, Katie, got to see a full-blown public meltdown when we tried to go to the grocery for 5 things a couple of weeks ago. He did not cope well at all and reminded, even me, why we just can't take him places like that very often. Of course, with vacation looming, its always nervous to think about how he will cope with all we will be doing. I generally try to make a book to explain everything ahead of time but since we are going back to Memphis, he remembers things, so I'm hoping that will help with behaviors.

Bliss had her orthopedic appointment and it went fine. He was worried about a slipped disc in her lower back but the xrays were normal, thankfully! He said she has a very slight curve but nothing to worry about at this point. We found out she is definitely allergic to pineapple! She had a little problem at school last week. Its basically just an oral reaction but I don't know if that means one day it could get worse like protein allergies can. I'm going to get her tested soon. We are also getting her hearing tested. Those of you who have followed our family since she was a baby know that she tested as 'hearing impaired' when she was an infant. Her last tests, when she was four or five, showed that she doesn't hear as well as the rest of us but within 'normal' limits. She says she has a very hard time hearing the teacher, especially if the other kids are talking. She is getting retested next week. Otherwise, she is enjoying a very full social life with playdates, which is great for her because her brothers take up so much time, its nice for her to have something for just her.

True seems fairly stable these days. We start speech therapy tomorrow...finally! PT is going well..although she is recommending he wear his braces all day, instead of just at night. He is having an EEG next week because of the seizure he had in October, although I doubt it will show anything this long after...unless he is having little events more often than we realize, which is possible. Fred and I are just amazed at how musical he is and what an entertainer he is...he is always trying to crack everyone up and LOVES an audience!

I have been working on Andrew's website...need to finish that today, actually! It will be for act of kindness project we do each year in his honor on the anniversary of his death. The other website crashed so I had to rebuild...it has been nice to remember things about him I have forgotten and just to feel like I am spending time with him...may sound wierd but those of you who follow this who have lost children will totally get what I mean!

Other than that, not much to report...although we are really tryign to change the way we eat...and factor in Gaige's food issues and True's allergies so its taking a bit of time to do everything differently, once again!

We'd love to hear from you...email us or sign our guestbook!

deb...for the gang!

Friday, February 23, 2007 9:01 PM CST

Hi everyone!

We have been LOST IN SICKLAND!!! First Bliss had a throat and fever thing...but nothing too bad. Then Gaige got the vomiting thing last weekend. We made a lovely trip the ER when he started vomiting bile after his second episode. They did a lot of labs his metabolic specialist wanted while sick and thankfully, it was only a 24 hour thing! Very thankfully...because I got it Tuesday...Fred got only a partial dose Wednesday and Bliss got a Partial last night. I am a germ-natzi...sending germ-ridden family members to exile if they are sick, so far, True (who is our most fragile one) has been spared! I hope I can say that this time next week!

The kids have been out of school this week for 'winter break'...we don't have that in the south...but they have this and then spring break in April. We went shopping Monday because Fred was off...in another town with a lot of outlets...and learned its a better place for just adults to go. The Kids were good but they are spread out and I wanted to stay much longer...but retail is my fave next to movie therapy.

That night we stayed in a Hotel in the far away land of South Portland (yeah, that's about five minutes from our house)...just so we could use the swimming pool! We have a friend that gets us a great rate b/c she works there so its money well spent for happy children! Fred stayed with us until bedtime and then spent the night at home alone (okay, I was a little jealous of that) because our 12 year old sweet neighbor girl, Rianna came with us. It was fun. We rented "Happy Feet" through the hotel and you guessed it...all kids were asleep before the ending. But I thought it had a great message...Gaige and I decided that Mumble kinda had a life similar to kids with autism...he had DIFFERENT abilities and saw things different ways...was often misunderstood...but very special and unique!

True had his endoscopy and biopsies on the 13th. He had some mild eosinophilia and my understanding is that the doctor confirmed the diagnosis of Eosinophilic Esophagitis at least. He may have it in other areas if he ate a normal diet but even on the limited one, his biopsies showed EOS in the top and bottom parts of the esophagus. I have to say that even though this diagnosis has been hanging over True's head for at least a year and a half, it was sad to get more confirmation. Sad that his life, as it relates to food, will be so limited. There are some cures being studied in clinical trials and some very driven moms raising awareness and funds...so I hope its a just for now thing...but its hard to imagine.

True is enjoying PT...Ms Jennie has become one of his favorite people! She has recommended that True start wearing the braces on his feet/lower leg all day now. His heelchords are not in horrible shape yet but as a child grows, they get tighter...and because he is milder, he stands a better chance at fully recovering them eventually, so that is actually a promising thing!

We haven't quite started OT/feeding therapy yet but should in the next week or two. He is having his swallow study repeated at the beginning of March to see if he still needs the same strength of thickener...so that will be interesting to see if he is clearing his liquids better now that he is older. He has made it off the speech therapy waiting list now!!! Finally after 7 months! We should start in a couple of weeks too. His doctor is also scheduling a kidney ultrasound b/c of some output issues and a strong family history...will keep you posted on that one!

Bliss is doing well. God is beginning to develop a very tender heart in her. She is becoming very interested in learning more about autism, which I think is great. It will always be a part of her life...and her best friend (Gaige) has it...so I am glad she wants to learn more. She is so smart, I am sure she is eventually going to make a career out of researching and curing something! She also has been having problems with her heelchords...so she is going to see an Ortho for the first time this week. Its possible she needs some PT or bracing at this point...because hers are getting tighter as she grows.

Gaige is...well...Gaige...and we love him for it...although some days we want to pull our hair out for it...but mostly, we love him for it! He is starting a mentoring program next week...which is actually cleverly disguised behavior therapy...he is excited about it. I am excited it will give me some time to find something special for Bliss to get involved in. A behavior consultant will spend four hours a week with us and then the 'mentor' will spend 6-10 hours a week with Gaige. Hopefully all the extra activity will be a blessing and not just another thing to try to fit in.

The winter is starting to get a little warmer...highs are now back in the 30s some days and I am happy to see it. We also have a lot of daylight back...seems like even faster then Memphis but I am sure I am misremembering. In December and January it gets dark at 4pm...so its nice its almost 6p now. It changed quickly.

We did sell our house! Praise Jesus!

We are heading to Memphis to visit friends and go to our neice's wedding in May. The kids are excited...and we are too...I already have a list of stores I must visit...restaurants me miss and supplies we have to bring back (Like Lusianne Tea).

Hope you are well...sign the guestbook and let us know you were here!

deb/orah for the gang

Saturday, February 3, 2007 6:39 AM CST

Hello everyone

I'll try not to make this update as somber as the last one...

True has been keeping me very busy! He has finally started therapy and we are doing some makeup session from the 6 months he was on the waiting list. He has been having PT twice a week with "Miss Jennie" and loves her! He also started Oral Motor therapy once a week with an OT who is specializing in feeding...she really knows her stuff. AND, we only number 11 on the waiting list of 108 that we have been on since August for speech therapy...seems like they would hire more therapists eh? We just got papers specifying which type of Cerebral Palsy he has..."Mild Spactic Quadraplegia", which is nice to know...and nice its mild.

True is a real riot most of the time and loves to make people laugh and squeel with excitement! He is such a joy!

Nothing much to report with Gaige except we are about to do some labs on his hormone levels so we can see if he needs to be put back on the shots. He has his first girlfriend, so the hormones are a-going!

Bliss has an appointment with eye doc this week for her eye that turns in...I don't know if and when we will need to do anything about it but its good to keep an 'eye' on...okay so that was corny! She is also seeing the orthopedic this month about her tight heel chords and calves. She may end up with braces at night too. She is doing better emotionally at school but doesn't seem as IN to learning as she did at first...but she's still smart as a whip!

We finally have a contract on our house...but just found out yesterday it has a little bit of termite activity in the garage. If all goes well, we will close next Friday. Hopefully it will all go well!

We just got about five inches on snow last night...its still falling off and on this morning but should stop soon. The older two are outside building a snowman as we speak! I love the snow...Fred, not so much./..I just figure if its cold, I'd rather have snow to look at and for the kids to play in than just bare winter...and its just so beautiful!

don't forget to sign the guestbook!

deb

Wednesday, January 31, 2007 6:50 PM CST

Its a melancholy sort of day. Fred and I became parents, created a family, ten years ago today. We always called today "Got me! Day". This would be a monumentous occasion were it not that someone is missing...and that means that no one remembers...and the day is sad.

I was looking in the scrapbook I made right after his first birthday...He was nearly 7 months old when we adopted him. It was nice to remember things I had forgotten...prayers I had prayed and others prayed with us as we waited for him, everyone's reaction when told them we were getting him the next day!

But the saddest part was realizing I wrote the whole scrapbook TO him....and he never got to read it. I am sure we looked at it a time or two...but I'm sad he never got to know what it was like waiting for him...and what it was like getting him.

Overall, I carry with me the peace of being ever so thankful that we did not know then that he would not be with us now. If we had, I am sure our choices would have been different. Which means we would have missed the opportunity to love the most amazing, brave and loving boy I will ever know...AND be loved by him...completely, with unconditional abandon.

He'll forever be my mentor, for my lifetime I will look to his example in the way he loved people...'beyond what he could SEE". I will probably never know anyone else who can teach that lesson better than Andrew and Jesus...and for that, and a million other reason, I am grateful to be missing him today.

deborah

Friday, January 19, 2007 8:08 AM CST

I really AM going to get better about this!

We have been busy the past week or so with a couple of snowfalls, which is great! But also Gaige turned 8 on Sunday and True turned 2 yesterday and we made a trip to Boston (for a drs appt) on Wednesday...AND their birthday parties are tomorrow...whew!

Not a whole LOT to report...for me, I am just really trying to finish up doing things regarding True's healthcare. Progress has been slow but we are finally making a little headway and have more to go!

True was approved for the Jason Program (www.jasonprogram.org) which is going to be a big blessing. They are really a support system for people who have children with chronic medical or palliative care needs. I am most excited that we will have a nurse that knows him well and help me/fred figure out which things need to be pursued further and which to wait on. With True having so many different issues...I never feel like I am able to give 100% to any of them. The nurse's first visit is Monday and her first PT session is today...making a little headway.

We went to see the plastic surgeon from the cranio-facial team this week in Boston. At this point, we are not going to pursue the surgery. The doctor spent almost an hour talking with us about all the pros and cons. However, he doesn't think he can give us the kind of correction we want to see and feels we would feel it wasn't worth it at the end. Because the deformity includes his forehead, ears, and base of the skull...he can't change any of those things. He could only reconstruct the middle of the flattening of his his right side. Its not worth it to not fix all/most of it. He offered to send us for another opinion in New York but I don't think we will do that...if we did, we would only send his catscan and then see what they said, instead of making a trip.

I am really upset that he is stuck with a deformity like this and am taking a lot of the guilt on myself...but I guess I should let it go, although I am sure there is a lesson in managing their healthcare that I should learn here. The reason his head is deformed is because helmet therapy was not started in enough time and when it was, it wasn't the right kind of helmet. Its frustrating because we complained to several docs about his head from the time he was a week old. It makes me want to write some nasty letters to some docs in Memphis! Boston says this is a very severe deformity (comparatively) and that had they seen us when he was 14-16 months old even, they could have tried a special kind of helmet. Overall, we feel he was very honest and caring and that for now, we are not going to pursue it any longer. If for some reason in the future an MRI were to reveal that some of his neurological issues could be helped by his skull not pressing his brain there, then we will reconsider.

Overall with True, we have battling some vomitting from a peach food-trail, which in turn causes some hypoglycemia (we even had a 46 this week) so its a lot to watch. I feel he needs a consult for some kidney issues and also feel there have got to be some pieces to diagnosing his (probable) metabolic disease here somewhere. I feel there is a lot of work to be done where Mr True is concerned. But he's happy...and a character...and keeps us all laughing!

Gaige is pretty stable...we are about to do a bunch of hormone levels to decide whether or not to resume his hormone/lupron therapy for precocious puberty! I will not be looking forward to doing shots again if I have to, but want him to have whatever he needs. We are still waiting for our in-home support to start and hope they find someone to work with him soon. He is loving the snow!

Bliss is well...nothing to really report...although we have an orthopedic appointment for her to check her heel-chords. They are getting quite tight and I am not sure if we need to intervene on this or not. She is compensating by bending her back (lordosis/swayback) to keep from going up on her toes. We knew that this may become more of an issue at some point in her life...so we are going to have it checked out.

We hired a respite worker this week! Its only 24 hours a month right now but I am elated to have a little help! Two mornigns a month she will come for four hours so I can have some time out alone, which I am looking forward to! She will also come 2 times a month on a Friday night so we can go out, which we need! The rest of the time she will come in the afternoon and help entertain the kids, which they will love! She is an art major, so they are hoping she will teach them some creative fun stuff...but photography is her major. She starts Monday!

Well that's it for us...sorry so lengthy...i guess there was more to report than I though!

Sign our guestbook!
deb/orah for the gang!

Thursday, December 28, 2006 7:03 AM CST

Hi Everyone...

the kids had a good Christmas...our first one with my "Uncle Ben" (my brother...we had different mothers and met when I was an adult...weird situation), which was great!

True finally got over his cold and we were able to get past it without having to go to the ER for IV fluids. Our next big adventure is going to Boston mid-January to see a neurologist and also the plastic surgeon from the craniofacial team and make a final decision about the surgery. Fred and I leaning towards going ahead with it. Our window of opportunity closes soon so we have to decide by that appointment. The PS wondered if growing hair would help but we honestly feel everything is less noticeable without hair...maybe because you notice his big gorgeous eyes more when its shaved...but nonetheless, we feel its better to fix it since we can. Pray for guidance as we make the final decision.

Gaige has been really stable from a medical standpoint and I am hoping he is growing out of his hypoglycemia but being home and off his normal routine, he doesn't eat as well for some reaons and has some lows. We need to have some endocrine tests ran to see if his puberty is still advancing and if we need to resume hormone therapy. At school. Gaige is doing so well...we are very proud!

Bliss has an amazing mind, we are finding out. She is quite a testimony to the Lord considering her original prognosis and entrance into this world. She can spell nearly 50 words I think and tries to read everything...even if she is far off...but she remembers it next time! Oh to have a young mind like that...ha!

We are good...looking forward to a New Years Open house we are having...and expecting 40-50 people. Bliss is so excited because her first kindergarten teacher is coming and she adores her!

I am busy trying to find a respite worker for us. We were approved for 24 hours a month, but I would rather not hire a random stranger and would rather hire a friend of a friend so we are trying that approach.

We'd love to hear from you!

Happy New Year to you!

deborah (for the gang)

Monday, December 18, 2006 9:35 AM CST

So its apparently, one of THOSE mornings! I thought I would share a 'day in the life'...not that all days are this crazy but you can find some humor in this one!

Fred said he woke me up at my usual 7a so he could leave at 7:30a but its monday which means he is leaving 10 minutes earlier today. So I wake at 7:10 when I see Bliss staring at herself in the mirror...ha!

But all I was going to do this morning is clean the house and do laundry, because after the weekends...it never looks how I want it to. So I decide to just throw on some comfy clothes (you know.,..the kind you don't want to be seen in). My hair is sticking up, but I'll deal with it after I put True down for a nap.

I go downstairs...get the kids lunches together...do Bliss' hair...breakup arguments (sibling rivalry because Gaige, who thinks he HAS to be in charge all the time, playing pick-up-sticks)...and then pour myself a diet coke and decide to read an email from another special needs mom who is venting over all she has going on.

So I am reading...knowing I have felt very much the same.

I read where she says 5 appointments this week and I think...how many do we have this week?

(Still thinking to self) Well, I know we have a feeding therapy eval and then we have...oh what is today? Monday...wait...Monday...the 18th????? OH CRAP!!!!!!!!

Guess who has a meeting at the school (called an IEP) with 8 educational professions...in 15 minutes???? Guess whose husband is already at work for the day????

HA!!!!

So you can imagine the scene...

Running upstairs...dialing the phone...stripping off clothes...telling the older two to follow me to get the baby up and ready. Call the husband...he hops in his car and drives! Find two things that look half way decent (did I mention I haven't gotten to wash my clothes but once in a month?) I put on jeans...I only own one pair...I don't really like jeans and always dress up for IEP meetings so I feel more confident...so I throw on a sweater and jeans!

Go to check on the baby and Gaige, who regularly sees fit to get the baby up and change the diaper and dress him when we DON"T ask him to...can't seem to cooperate...typical!!!

In a moment of inspiration, I promise they can open a Christmas gift tonight if they will JUST do something to help. Bliss is helping of course, but not physically able to wrangle a two year old as well as Gaige could.

So I run back to my room...wet the hair...try to put some gel in to make it lay down better...put on concealer and mascara and go back to the baby's room.

Gaige starts putting his shoes on, which I tell him can be done in the car. I start dressing the baby...the pile of his clothes and clean diaper I gave to Gaige to work with are now scattered all over the room. Bliss tracks it down while I change him in one minute flat. We head downstairs...

Except Gaige, who has just now learned to tie his shoes and is still up there trying...

I make the bottle...grab a snack for True...tell the kids to grab coats...manage to put one on True...but not myself...oh well...bring the dog in...and put them in the car.

Then I run back inside and grab the OFFICAL SCHOOL NOTEBOOK...that has all of Gaige's IEPs and junk...minus my prep list which I usually do DAYS in advance and never thought of it...run back out to the car and drive like a maniac. (Maine is notorious for 25-30 mph roads so I don't speed too much.) I make my usually 3 minute trip to school in 2 minutes...panting the whole way!

Fred is calling to find out where I am...uggh...ha! If only he knew what just happened at our house!

Fred gets the wheelchair/stroller out with True in it so he will be still during the meeting. Then I remember that this school (we have only been at two weeks) has stairs to get inside and NOT handicap accessible. We carry him up the stairs and then the secretary tells us we can't park where we parked. Fred goes to move the car.

I'm actually only 2 minutes late getting to the school. The resource teacher and our case manager are waiting inside the door. We wait while Fred re-parks. The older two kids are chomping at the bit on what they are supposed to be doing.

We take them to the playground (where they go every morning before the bell rings...what they are supposed to do)...but my girl has been crying almost every morning on the playground b/c she can't find people she knows...I tell her...NO time for tears today and have Fred take her and give her a nudge out the door.

They lead us to the meeting...down in the basement...a WHOLE flight of stairs! So poor Fred has to carry True and the chair down...good thing he's little.

Then I take a deep breath and walk into, trying to look professional....in front of the principal, educational strategist, school psychologist for the district, liason for the district, speech therapist and his regular teacher.

They make comments about this time of year being so hectic...I am like...yeah...that's it!

No, that's not it...I have had a sick husband who was home from work on Friday...that'll throw you off your schedule...and a sick baby who, with just a little cold, has to have round the clock asthma treatments and extra feedings through the night...and blood sugar checks and ketone checks and on and on!

And...okay...Christmas...because I have been up til 2am the last two nights trying to wrap the gifts (which I finished)!

And school...which had a cookie exchange Thursday for Bliss...not just bring cookies...homemade ones (Love to cook, hate to bake) and the recipe to share with everyone...while trying to cook them with a sick baby who wants to be held and is allergic to every known cookie ingredient!

And now, Gaige is having Pioneer breakfast...oh dear...tomorrow...and I HAVE to come up with a pioneer recipe! Like anyone needed one more thing to do this week!!! I mean, honestly, couldn't they have done that after the holidays?

But on a brighter note...the meeting couldn't have gone better. Was the first IEP meeting that we ever had where they didn't question our diagnosis or go on and on about how opposite they see Gaige (code for--what you want for him costs us too munch money). So that's a blessing after a morning like that!

Whew!

And...note to self...don't have IEP meetings at 8:15a on a Monday morning!

I should go clean something...and wash my clothes...or take a bath with a candle and good book!

deb for the gang

Saturday, December 9, 2006 12:14 AM CST

Hi everyone!

I hope you are having a happy December and not too overwhelmed with holiday to-do's!

We moved in our new house November 18th...and feel very blessed by this new house...its virtually a brand new house inside...and a victorian farmhouse outside.

Since I am a major organizer...I had everything unpacked and decorated within four days. Then I took part of it down to decorate for Christmas (I know, its insane...I have 9 rubbermaid totes of Christmas stuff).

Today is our first real snow (we got 90 minutes of it Monday but it was nothing). We have about 3" so far and its still coming down for a few more hours. Its beautiful and I very bravely drove the kids to school in it...my first time driving in snow...the kids couldn't believe I hadn't done that before...aren't all moms supposed to know how to do EVERYTHING? They got geared up in their snowboots, snowpants, coats, gloves and hats...Gaige had on 3 pairs of socks! Funny!

On to the kid update:

Gaige is adjusting to sharing a room with True. He says True is keeping him up but has only really woken up one time. The kids started their new school this Monday and he seems to be doing okay. Their school went and observed Gaige at his other one and made a plan and schedule (he's busy with 12 hours of resource, speech and occupational therapy and all the other regular activities they make sure he doesn't miss). We have a meeting on the 18th to see how its all working and make any changes needed. He is really reading and spelling quite well now (although Bliss is not far behind) and finding joy in it for the first time, which is great!

Bliss has had a much harder time with the school change. The night before last day (Dec 1st) at her other school...we hear her crying in her bed...when asked what is wrong she says "I dont' like the second day of December!" I asked why and she said "Becauuuuuse Mrs Dalton wont beeee my teeeeeacher aaaaaaanymoooooore!" It was so sad! I wanted to cry (and pack up and move back to that moldy house). She's cried a few times this week but likes her teacher. Bliss is really so smart...she amazes us...she can spell over 30+ words that she taught herself and can even read some very easy books. I never tried to teach her any of that before school started (think they have enough time to learn that stuff), so she's picked it up quickly!

True is doing well...i think this might be the first month where we didn't have some new diagnosis to share. My main concern right now is that he is losing a little weight...still not enough to be serious but enough to keep an eye on. He hasn't had any more seizures that we know of. There is only one pediatric neurologist in the state and we didn't see eye to eye on things so we are getting a third opinion in Boston in January. Hopefully they will either agree with our Memphis one or perhaps the Maine one and we can have a consensus. We will also meet with the Neurosurgeon that day to have a sit-down about whether to do the cranial reconstruction surgery or not. Its the day before True turns 2...I can't believe it! True is eating three foods quite successfully now...Potatoes, Banana's and Pears...we may retrial carrots and apples soon. He doesn't LIKE the apples or I think he could tolerate them. We start working with an oral therapist on those things on the 20th. True's orthotics (braces) will be in about a week...and we start physical therapy, finally, about the same time. He is still sweet and smiling and starting repeat everything we say, with great comical timing! (Gaige said he's not allowed to be the funny one because "that's MY line".)

On another note, since living here and being out of the mold house...both Fred and I feel a lot better...we were both having headaches and haven't had one since we have been here. I feel more energetic too. True hasn't had to have any extra asthma treatments.

Honestly, I could go on and on about God's provision financially, and in this house and where we are now! He is faithful beyond our wildest dreams!

The holidays are especially poignant this year...without my mom for the first time and of course, we always miss Andrew a lot this time of year since Christmas is so kid-centered.

Well I hope you have a very happy month. I will be posting my yearly 'Ten things I know for sure" list later in the month...still working on it!

sign our guestbook, if you please!
Merry Christmas to all!

deborah for the gang

Saturday, October 28, 2006 8:16 AM CDT

Hello All

a little more detail...now that the neurosurgeon in Boston has reviewed his scan..

The 3-D CT scan was originally scheduled b/c of True's head shape. He has, according to the neurosurgeon in Boston, 'one of the worst deformities I have ever seen'. They were looking to see if his skull sutures were still open at all. As you may remember, we did helmet therapy, unsuccessfully.

The sutures are still open...had they been closed they would have definitely operated b/c he has a good chance of intracranial pressure at some point in his life. So now, we are all on the fence on whether to do the surgery...its a big surgery...6 hours...where they take the bones of his skull out and re-place them. In Memphis, they had recommended the surgery but in Boston they don't do it for 'cosmetic reasons' but b/c his deformity is so profound they are open to it. They have invited Fred and I to come and have a chat with them and make a decision together.

However, there are no long-range studies to know how this will affect him long-term with this level of deformity. We are most worried about his already-proufound orthodontic issues and his asymmetrical ears (making glasses, if they are in this future, really difficult).

I don't think they can promise there will be no effects OR that IntraCranial Pressure wont be in this future with this bad a deformity. So we don't know what we are going to do.

On another note...our rental house has mold. True has a mold allergy and asthma...so I believe we will be moving to another rental house in the next couple of weeks. Unfortunately, because they keep the elementary schools small (which is great), you can move just a mile or less and have to go to a different school, so they will almost certainly have to change schools. We are looking at a few rentals early next week, so we will know more then. It was SO hard to make the decision to move but we really feel for True, especially as we head into 'sick' season, that we need to do it. Plus, who knows how it can and would affect our health too. Say a prayer as we deal with our landlords and pray they will be fair. We tried to give them a chance to correct it but they did not think it was important. The law is on our side but they still can make it difficult to resolve (and refund our deposit and so forth). If they give us any trouble the local office that fights for the rights of Childrens with disabilities has already been put on standby by our case manager (her idea, not mine) but I am hoping we can just move and resolve this easily...we have been through enough.

Gaige is reading so much better these days...I am just thrilled! They definitely seem to understand him and his learning needs here, which is great!

Bliss is doing great...loving school and making friends. We had her first Parent-Teacher conference and she got a glowing report, but they said she was shy...ha!

True is doing well with everything else...we are trialing pears right now and I think he is going to be able to keep them. He is still not using his left arm as well as he was before the seizure but in the past couple of days it has improved a tiny bit.

that does it for us...I'm out in the rain to find the SuperWalmart in a neighboring town to save money on groceries...

love
deb for the gang

Wednesday, October 25, 2006 6:37 AM CDT

Hi everyone...

Thanks for all the recent extra prayers...the CT scan went well.

True had started getting a cold so I was worried they were goign to make us postpone for two weeks, which I didnt' want to do. When we got there though, we found out that True only had to be still for 16 seconds for this special scan. So the anesthesiologist decided to give True a valium-type med by mouth and see if we could get him to go to sleep. Although he was a little loopy and tired, he was still awake.

So we went to the cat scan suite and they put him in awake and loopy...well after 20 minutes of trying everything, they realized I was right and that he was not going to sit there, by himself and be perfectly still. So, we went back to our room...they started an IV and injected the same med in his IV line and he went to sleep within a minute.

Last night, I overnighted the CD for the doctors in Boston to see, but the preliminary report seemed normal (well except for the SHAPE of his head).

We are so happy there was no apparent a brain tumor (we didn't share this with everyone but after his seizure, several people mentioned a brain tumor as a possibility). We still don't know about intracranial pressure.

Depending on what the doc in Boston says, we are going to likely get a second opinion, but we will wait and see what the recommendation is from him and then decide.

If there isn't any pressure (which is fixed surgically), then it means that he will likely have more seizures and this is part of his Cerebral Palsy/Neurological problems and not from ICP.

I probably wont post unless they find something on the CD. Otherwise, we will be asking the state to pay for a second opinion and also seeing a Neurologist here on Nov 9th.

thanks for the prayers...everyone else is good...kids are excited about their costumes for Halloween.

love
deb for the gang

Friday, October 20, 2006 7:04 AM CDT

Hi Everyone

Been meaning to update but you know...

Good news is no cataract...confusing news is that they still can't get a red reflex in that eye. So we are just watching it.

As if that and the new diagnosis of asthma weren't enough...True just had to throw something else in the mix. Wednesday night we were at the ER because True had a wierd episode...most likely a seizure (or possibly a stroke-like-episode). He had some residual effects (on his left side, which is his weaker side CP-wise, anyway)that have not resolved completely, yet. So we are watching him closely. He has an appointmed (that we made 2+ months ago) with the (only) pediatric neurologist in the whole state coming up on November 9. So we are waiting for that. Our Memphis neuro had already written in his notes that he thought True needed another Video or Regular EEG.

True is having a cat scan Tuesday for his head shape...this will help rule out other reasons he could be having a seizure too, so we are even more anxious to see what it says. There's a chance he will have to be admitted afterward because he has not been handling anesthesia well the last few times and he ends up throwing up and going into a metabolic crisis. So pray it all goes well and True's body adapts to everything easily.

The other kids are good...nothing really new to report. Thanks for reading...leave us a message to let us know you are here!

love
deb and the gang

Saturday, October 7, 2006 9:40 AM CDT

Some of this might have been posted already but its a basic summary of the past month for us.

Gaige is doing well in second grade. The school system here truly has more supports in place and we even agreed to let them not do a one-on-one aid for now and see how he does. They have had a few rough patches but we all know he is likely still in the honeymoon phase and more may happen. He has a great resources teacher who is male and I honestly think that has helped too. All of his teachers (occupational and speech therapists,too) say he is such a hardworker and that goes a long way!

Bliss LOVES kindergarten! She loves homework too! (Yeah, we wonder how long that will last too!) She has homework tonight and has been begging me all afternoon to do it now...ha! I miss her terribly in the day but am glad she loves it so much. She told me yesterday that all her friends were boys...oh dear! Could that be starting already? Bliss just lost her first tooth last night...that's BIG news around here! We didn't even notice it was lose...it just fell out and we found it on the floor...a nice to break her in, I suppose!

True has been a very busy boy! Not only is he busy like all toddlers...you know, running from mom and laughing all the way, but he has been busy meeting lots of new doctors who all become instant fans!
Who have we seen? The GI doc who decided that as long as he is on the treatment
for Eosinophilic Disease, he is not going to do any more scopes...which is so brilliant
I don't know why none of our docs thought of it before.

We have also seen Allergy twice for more testing...and have gotten to add bananas to his diet of potatoes and formula. I have even learned to make muffins out of potatoes and bananas! He was diagnosed with asthma this week...and is on daily breathing treatments. He is still trying to get used to the mask but is doing well with it.

True was seen by the local Geneticist who agrees it is more likely a metabolic reason for his hypoglycemia and crashes and so we wait for the next crash to try and get more tests done (they are always more telling in a crash).

True and I also took our first trip to Boston...driving in
the city wasn't as horrible as I thought, but never will be something I am just loving to do.
He saw the Craniofacial team there who has yet to decide about the surgery the Memphis
team recommended...they ordered some special scans of True's head that will be done
later this week.

He will also be sporting some new hardware soon...SMOs, which are leg
braces that will point his feet and tibias in the proper direction...getting him used to those,
should be fun!

The latest concern with True, besides the asthma, is that he has a cataract. We had an
appt for November but they are moving it up next Wednesday because he is now not aligning his
eyes right...maybe to compensate? Hopefully, this will be nothing and not another
surgery.

That about does it for true...as if that is not enough! He starts speech and physical therapy finally, in the next couple of weeks. But you know...through it all, he is generally happy (if you want me to email you a clip of him saying HAPPY!, let me know...its adorable) and he's fairly content...he didn't even flinch when they took blood last week. He has such strength and teaches me every day.

Pray for the sale of our Memphis house, if you think of it...paying both the mortgage and the rent here (which is astronomical) is difficult and we would like to be free from it as soon as we can!

IF YOU ARE STILL READING THIS...one more thing...Moms of kids with special needs, chronic medical issues and so forth all struggle with this same sentence being said to them "He/She LOOKS okay!" When Andrew was sick, some people were quite confused that he could walk and kick a soccer ball and was a whopping 115 pounds when he died b/c we all think of emaciated children with cancer or severely-affected kids with Cerebral palsy as the picture of what a sick or disabled child is. We know first hand that is not always true and a gal, named Brianna with Mitochondrial disease (what Andrew had) has done a video on this very thing. Its 4 minutes long and if you love someone who has special needs or a child with special needs...give them four minutes and view this clip. If you don't mind, vote for Brianna too.,..she's trying to win a spot on tv for her clip. Do it in Memory of Andrew, if nothing else. Its really great! You can find her above my kids picture on this page...double click on 'watch this video".

that's about it for us!
love
deb and the gang

Friday, September 29, 2006 5:21 PM CDT

Hi all...

Sorry that took longer than I intended...just a busy week with appointments and setting things up.

The appointment in Boston was very...interesting...and intimidating! First of all, to all my special-needs-mommy-friends...I respect you for using Boston Children's...that place is as busy as Disney World!

After I recuperated from the hustle and bustle downstairs...and certainly feeling like a small-town girl (even though I have only been one of those a couple of months)...I went to the appointment. They called us back and I was expecting the typical scenario...you know the nurse checks you in and you wait for the doc to come in. A cranio-facial team is made up of a plastic surgeon, neurosurgeon and a dentist. In Memphis, they entered the room together and talked with you...but in Boston, the whisked us into a conference room where ten docs were on one side of the table and me and little True were on the other side.

Basically, they decided before they made a decision to do a 3-D cat scan. This gives them a perfect picture of True's skull...will tell them if his sutures closed early and if there is any intracranial pressure on his brain. We are having it the 24th and because its under general anesthesia and requires fasting, there's a chance we will be admitted the night before for IV fluids. The anesthesiologist called me himself this afternoon to get more history...True is quite difficult to make these sorts of decisions for b/c he has so many variables to consider.

We saw the geneticist this past week also...She is basically going to piggy-back on True's metabolicist in Boston and wait until True has another metabolic crisis and see if we get the labs we missed last time. "Crisis/sick labs" are the most telling for kids with these issues so that's what we are waiting for.

True was also seen by the orthotist this week about getting shoe orthotics...he will be getting SMO's which will help control the position of his foot when he walks. Because of his high muscle tone, his toes and feet turn inward. We go for casting next week...and I am not sure how long til we get them...or how to find shoes to fit them.

We have a busy week next week...True will see the allergist for more testing. He recently had some testing that revealed some environmental allergies we were not aware of. He is also having symptoms of asthma so we are keeping an eye on that, as well. True also has appointements with the Child Development for evals regarding his PT and Speech. True and I are hopping!

True handles it all so well..and is almost always agreeable and a good patient.

The kids are loving school...both of them are going on field trips next week. Gaige is going to the TV Station and Bliss is going leaf collecting (and she gets to go Apple Picking and to the Fire Station in October). Bliss LOVES homework, even though the kindergartners really don't have any. Gaige is doing pretty well...we decided to try him without an aid and at first everything was great but they are seeing more problems as 'the honeymoon' wears off.

Bliss had her first pedi appointment yesterday and we are following up on a few things. She is going to be tested for allergies since she has been on allergy meds for over a year but we dont' know what she is allergic to. She is also going to see an Opthomologist about her eye that is turning in...it is getting more noticeable. She will continue to follow up with a neurologist for her high tone.

Fred is loving his new job. A friend of mine offered me a job this week that will work very nicely for a special needs mom...I will be taking Mortgage applications. So if you are in the market for a mtg...let me know.

Not much else is new or going on. Even with all this, I find myself bored at times...I guess I will be until we are able to make more friends. Oh yeah...we think we have found a good church to attend now so I am trying to get to know some ladies from there.

We'd love to hear from you...sorry about the long update but there was a lot to cover...and I could have written more.

love
deb for the gang

Friday, September 22, 2006 6:52 AM CDT

Hi everyone...

sorry its been a while. There is MUCH to report and I will get to it in the next few days. Today I am taking True to Boston to see the Craniofacial team (a neurosurgeon, plastic surgeon and special orthodontist) to see about the Cranial reconstruction surgery. I will let you know what they say in my next post.

thanks for the prayers and good thoughts!
deb and the gang

Friday, August 25, 2006 8:22 PM CDT

Hello everyone!

We have really been enjoying the beach lately! We hope to get in one more trip if we can get warm enough weather. It is already in the 50s at night, which is fine with me...and in the low 70s during the day. Its just beautiful and fall is lurking around the corner, which is going to be exciting...a new england fall!

Gaige is gearing up for school. He starts Sept 5th and got to meet his principal a couple of weeks ago. He will have been out for FOUR long months by the time he goes back and I think he is ready for the routine again! He has a pediatrician appointment next week and sees the geneticist on the 15th. His test for muccopolysaccharides came back with traces of a bad enzyme but not enough to be diagnostic so they want to run it again. Why doens't that surprise me?

Bliss is very nervous about school but gets to meet all the other kindergarten students and teachers next week during a meet and greet. She doesn't start until the 11th and we have a school picnic next week too...hopefully all the extra socialization will help her feel at ease. She has become an expert at catching dragonflies, which of course, makes mom quite happy!

True is BUSY,...did I tell you they diagnosed him with hyperactivity! Boy does he keep me hopping...and while he is mostly happy, he can really throw a tantrum...complete with kicking his legs as fast as he can...its almost funny! He had his first doctors appointment today...with our new pediatrician. They are actually seeing D.O.'s here instead of M.D.'s which I think I am going to like. She was very agreeable with getting everything going for him...and hooked me up with some helpful resources. His Early intervention is supposed to start just any day, although there is a long waiting list for PT. His pedi said she was going to try to get him into PT sooner because she felt his muscles were way too tight from not having PT for a month. She also is ordering orthotics for him...which is the new term for braces (although they don't look like the braces that we used to see as kids). I'm not sure how long that process will take but his disfigurement is becoming more and more pronounced so we need to do them now.

He has a lot of pending appointments with the allergist, GI and so forth. Our biggest deal is going to Boston to see the Craniofacial team to decide about the cranial reconstruction surgery, which I am hoping they can do around the beginning of November. They also have a dentist on their team and True's palate and gum/teeth formation is really out of line so I am anxious to see what they can and would do about this. Since he isn't really eating much, its a blessing because I don't know how he could affectively eat with the way his teeth are now. We added two new things to his diet...we found a new potato chip that is cooked in a safe oil, so we actually have chips we can take with us places now to keep him busy! whoo hoo! We also started with sugar cubes...just to work on some texture changes and types of taste that are different. At first he didnt' like them but then me and Bliss (Gaige of course wouldn't eat them...he has his own texture issues) ate them a few times and told him how great they were and he bought it! We call them his treats and he is very happy about it!

Fred got a great job offer today and starts the same day school starts back...so that's pretty exciting! He is working for a temp agency in the meantime.

Things are going well and we love it here! We love you and would love to see your name in our guestbook!~

love
deb for the gang!

Saturday, August 5, 2006 7:26 PM CDT

Hello everyone!!!

Well, I am certainly more energetic writing this email than the last...although I have had the TIRING experience of being at the beach half the day...it was the 2nd time we HAD to go this week!!! Tough life,eh?

Things are moving right along although I wont feel we are into a real routine until after school starts Sept. 5th.

Gaige started will finish extended school year on Tuesday...he will be sad since he loves school but he loves playing here so he will find other things to do! He is looking forward to 2nd grade and enjoyed beginning to learn the Boogey board at the beach today.

Gaige got to start the round of meeting new doctors with seeing an endocrinologist last week. We have decided to stop the hormone injections for now and see how things progress. This doc didn't think his numbers were high enough to warrant Lupron and we had felt the same thing, which is why we asked the dr in Memphis to wait another six months but finally couldn't hold her off any longer. He will go back in four months and get a bunch of blood tests done to make sure this was the right decision. His MPS testing that was done in Boston...the one we have been on the edge of our seat about...has to be done again, apparently Gaige's urine sample was too dilute so we shall try again.

Bliss is loving living next to two girls and feel she has made great friends...which she has! She is looking forward to kindergarten on some days and not on others. She wont start until September 11th so she has a while. The principal at the school they will attend called last week and wants me to bring them up week after next so she can meet them and show them around...can you believe that? Everyone really is super nice here!

True seems to like it here...he adjusted quite easily (really, they all did) and like being outside more. The way our deck wraps around the house to a fenced in area of the yard keeps him in while still giving him freedom to roam. True has some sensory issues that prevent him from enjoying water (even bath) and he isn't too crazy about the sand either, but he tried today at the beach...finally he would play with it some but I don't think he thought it was the best thing in the world! We retrialed pork with him but it didn't work so he is still just on potatoes and his special formula. His PT and Speech will resume within the next two weeks. True has several doctors appts with the pediatrician, GI, allergist and neurologist from the end of August until mid September.

So, the kids are kinda getting a break from the norm right now, which I am treasuring!

Be sure and enjoy the new photos and leave us a comment in our guestbook!

love
deb for the gang!

Saturday, July 22, 2006 10:59 AM CDT

Hello everyone from the great state of Maine!

We had a few mishaps along our journey...like the moving company we hired in May suddenly couldn't fill our order, so we had to hire a friend to drive a truck and do it ourselves...nothing major...ha! The worst part was having to leave some furniture and stuff behind because the truck was too small.

We packed the truck on the 12th and headed out of Memphis about 4p...our friend (and one of my mentors) Ellen was there to pray and send us out! We made it to Cookville (about a four hour drive) and spent the night there.

Thursday night we were in Greensboro and got to spend the evening with our dear friends, the Walts (John and Laura, Elizabeth Joy, Johnny, Mary Chambers, Sara Grace, Robbie and Samuel)...they are like my spiritual home base so it was great to get recharged and see them!

Friday night we had great plans of staying in downtown Philly and experiencing a genuine Philly Cheese steak! One problem...a 22 foot truck in downton Philly...not an easy thing to park. We had called ahead and they told us that the bellman could direct us to a parking lot a few block away...no problem...unless you think of 25 blocks as a FEW. So we ended up having to drive an hour past Philly and no cheesesteak...boo hoo!

By Saturday, the driving was starting to get to us. The kids did great but were getting tired of DVD's and gameboy. (Our pup, [no]Trouble[at all] did great!) Then we could only get a flight out of Boston to send our driver back to Memphis...so we got to take the lovely detour that the crashing of the BIG DIG in Boston provided...yeah, good times! We dropped Trouble off at a friends (in Wells, Maine...good town name eh?) and arrived in Portland about 7p. We drove straight to our new house and got to meet our landlords as they pulled off in their 22 footer to their new town.

Sunday was moving day. A bunch of guys from the church here in Portalnd came to help us out and when I ran to Target for something, they had almost finished by the time I got back. It was 'wicked' (that's New England lingo) hot so we just unloaded and then went back to the hotel. We got in the car that night to go to church and it wouldn't go in gear...uggh! The church sent some guys over and they were able to temporarily fix it but we are still going to need professional intervention!

You know some people would throw the towel in after all these mishaps...but I have a couple of thoughts. When you are doing what God wants you to do, Satan is there trying to get you to think about something else! Also, when you lose a child, these things never seem like such a big deal as they used to be.

We were able to stay at the hotel until Tuesday, thanks to our friend Melissa who was able to get us a great rate! What a blessing that was...not to have to get everything perfect right off the bat.

By now, we are here and its our fourth night here...we have all but 8 of our 80 boxes unpacked and put away. We have all the rooms pretty much in order except our bedroom. We have some furniture still on order, but we are all set!

We have our first out of town guest staying with us this weekend...yipee! He's a friend from Memphis who is temporarily stationed in Boston, so its great having a friend here! Also, we are hosting our first party tonight...you know how much we love to entertain...buffalo chicken pizza will be good!

We have FANTASTIC neighbors and have really enjoyed getting to know them this week...I know Cami is going to read this and she is wonderful! We have kids on both sides of us for the kids to play with, which is something we didn't have in Memphis.

The deck and yard are amazing...so beautiful! We went right out and bought a patio table and a grill...goign to enjoy this weather all we can! It was 95 on Tuesday which is horrible without air condtioning...very few houses have air here. Our house was built in 1880 so there are only two windows that might support a unit...a friend is giving us one tomorrow to test out! We bought four tower fans and its been pretty good.

All in all, I love the pace of life here...I could go on and on about the perfect strangers that went out of their way for us this week...everyone is so helpful...not like other parts of New England (except you, Kerry) where people are not always so nice. Now that the boxes are unpacked, we look forward to enjoying local life...going to the beach and the farmers market.

You should come visit...we would LOVE it! Drop us a line...email or sign the guestbook here...we'd love to hear from you!

love
deb for the gang!

Friday, July 21, 2006 10:19 PM CDT

Hello everyone from the great state of Maine!

We had a few mishaps along our journey...like the moving company we hired in May suddenly couldn't fill our order, so we had to hire a friend to drive a truck and do it ourselves...nothing major...ha! The worst part was having to leave some furniture and stuff behind because the truck was too small.

We packed the truck on the 12th and headed out of Memphis about 4p...our friend (and one of my mentors) Ellen was there to pray and send us out! We made it to Cookville (about a four hour drive) and spent the night there.

Thursday night we were in Greensboro and got to spend the evening with our dear friends, the Walts (John and Laura, Elizabeth Joy, Johnny, Mary Chambers, Sara Grace, Robbie and Samuel)...they are like my spiritual home base so it was great to get recharged and see them!

Friday night we had great plans of staying in downtown Philly and experiencing a genuine Philly Cheese steak! One problem...a 22 foot truck in downton Philly...not an easy thing to park. We had called ahead and they told us that the bellman could direct us to a parking lot a few block away...no problem...unless you think of 25 blocks as a FEW. So we ended up having to drive an hour past Philly and no cheesesteak...boo hoo!

By Saturday, the driving was starting to get to us. The kids did great but were getting tired of DVD's and gameboy. (Our pup, [no]Trouble[at all] did great!) Then we could only get a flight out of Boston to send our driver back to Memphis...so we got to take the lovely detour that the crashing of the BIG DIG in Boston provided...yeah, good times! We dropped Trouble off at a friends (in Wells, Maine...good town name eh?) and arrived in Portland about 7p. We drove straight to our new house and got to meet our landlords as they pulled off in their 22 footer to their new town.

Sunday was moving day. A bunch of guys from the church here in Portalnd came to help us out and when I ran to Target for something, they had almost finished by the time I got back. It was 'wicked' (that's New England lingo) hot so we just unloaded and then went back to the hotel. We got in the car that night to go to church and it wouldn't go in gear...uggh! The church sent some guys over and they were able to temporarily fix it but we are still going to need professional intervention!

You know some people would throw the towel in after all these mishaps...but I have a couple of thoughts. When you are doing what God wants you to do, Satan is there trying to get you to think about something else! Also, when you lose a child, these things never seem like such a big deal as they used to be.

We were able to stay at the hotel until Tuesday, thanks to our friend Melissa who was able to get us a great rate! What a blessing that was...not to have to get everything perfect right off the bat.

By now, we are here and its our fourth night here...we have all but 8 of our 80 boxes unpacked and put away. We have all the rooms pretty much in order except our bedroom. We have some furniture still on order, but we are all set!

We have our first out of town guest staying with us this weekend...yipee! He's a friend from Memphis who is temporarily stationed in Boston, so its great having a friend here!

We have FANTASTIC neighbors and have really enjoyed getting to know them this week...I know Cami is going to read this and she is wonderful! We have kids on both sides of us for the kids to play with, which is something we didn't have in Memphis.

The deck and yard are amazing...so beautiful! We went right out and bought a patio table and a grill...goign to enjoy this weather all we can! It was 95 on Tuesday which is horrible without air condtioning...very few houses have air here. Our house was built in 1880 so there are only two windows that might support a unit...a friend is giving us one tomorrow to test out! We bought four tower fans and its been pretty good.

All in all, I love the pace of life here...I could go on and on about the perfect strangers that went out of their way for us this week...everyone is so helpful...not like other parts of New England (except you, Kerry) where people are not always so nice. Now that the boxes are unpacked, we look forward to enjoying local life...going to the beach and the farmers market.

You should come visit...we would LOVE it! Drop us a line...email or sign the guestbook here...we'd love to hear from you!

love
deb for the gang!

Sunday, July 2, 2006 7:20 AM CDT

Hello Everyone!

I hope you are staying cool! It was 102 yesterday and still 98 degrees last night at 8pm when I went to get Milk at the Grocery. So, Maine Summer is looking PRETTY good about now!

As far as word from our tests in Boston, nothing conclusive has showed up for either of them, so far. We are not expecting some of Gaige's back until mid to late July. However, we were not able to get the ones we really needed from True (couldn't get urine for Organic Acids, even after catherterizing him), so I think we are going to have to wait until his next metabolic crisis and try again. Otherwise, everyone is stable...and we give Gaige his injection this week...never, my favorite time of the month!
Bliss had a reaction to her kindergarten shots...she got measles that weren't actually a real case...but they were itchy! She still has a few bumps here and there!

Andrew's birthday is Tuesday...he would be TEN years old! I wonder what he would be like if he were still here. I'm sure he would have been amazingly lovable and still hug and cuddle with mom and dad...it was just his nature to be that way! We plan to take donuts to the Angel of Hope Tree we have and leave an ornament we got that says Portland, Maine. Later Tuesday, we will hand out basketballs. (Also, sometime Tuesday, I will be spreading my mom's ashes on my father's grave, which was her wish, so pray for us Tuesday...should be a hard day.)

Well, we move July 12th! I still can't believe it! We are excited and I'm a little scared too...I have never lived anywhere else but Memphis.

Recently, we were at a gathering for some friends, who bravely became missionaries recently, with four kids aged 9-14. The mom, my friend Angie, introduced us to people as missionaries as well...and then going on to explain that we have adopted four children with medical issues. I guess I often feel unworthy of the term missionary or people will say we have a ministry and I don't always view it that way, because these are just my kids! However, I realized that moving was part of our mission and the call on our lives.

Moving to parts unknown for the sake of our kids medical care is our mission. I began to hear God speak this to me when I was at that gathering and listening to what Angie and her family was doing. Then in the past week or two since then, both Angie and another friends of ours who became missionaries about two years ago wrote to tell me that we all shared the same feelings and so forth...which to me, is a confirmation. So, we boldly follow what God has called us to do...even when its difficult and hard to say goodbye to everyone! There are so many unknowns going to Maine and yet, so many possibilities! Leaving everything I know of Andrew and my mom/family behind in Memphis is a very odd and scary feeling, but I know they are with us and I know they would approve!

There is much to do before we leave...the packing, the times with friends, organizing lots of things and so forth. There is also, much to do when we arrive...like find Fred a job (a BIGGIE), get Gaige in Extended school year, make drs appts with all new docs, set up therapies and medical supply deliveries...and on and on! You can pray I don't get overwhelmed and can figure out what needs to done at the time vs going in a million directions!

So we are exhilarated with adventure and waiting to see what God is going to do!

Will keep you posted here! Thanks for visiting and PLEASE sign our guestbook!

love
deb for the gang!

Saturday, June 17, 2006 7:31 AM CDT

Hi everyone...

Sorry its been a long while since I updated. We have spent every wakening moment getting the house ready to put on the market. We decided to go selling it ourselves and signed with an agent this week.

Things are rolling along and we could move as early as the first week of July. We should know more early next week.

Healthwise, the kids are all stable. While we were in Maine, True had a metabolic crisis and we had an 11 hour ER trip. The blessing of it, is that we got to test out the new hospital, and since we are moving for better medical care, it was nice to have the experience (with Teresa as my guide). When we saw the Metabolicist in Boston he gave us an emergency protocol letter for both of the boys and Maine Medical didn't bat an eyelash at what they were asked to do, which included taking a bunch of crazy labs while he was in crisis and administering IV antibiotics. I know for sure, in Memphis, it would not have been handled with such ease so I was thankful to see that the sacrifice of our move seems to be very worthwhile.

Gaige got his third hormone injections when we got back. Administering it this time, wasn't as bad and so I was thankful for this. We have noticed that the hormones actually seem to be helping him calm down and with some of his other behavioral issues, which is a GREAT side effect.

Bliss is fine. A little confused, but fine. She just can't wrap her mind around the house being sold and belonging to someone else, and that we wont know the people who live here and so forth. She told me yesterday if we moved back to Memphis (meanwhile saying she was living in Maine forever, even after she marries) this would still be our house. So we will see how she processes it all after its done.

The boys appt in Boston went super...four long hours, a lunch break and then back for paperwork and labs, but super. He had a lot more ideas about where to look for a diagnosis for Gaige, than with True. He took eight vials of blood to run tests for Gaige. He also feels that Gaige could very well have bits of chromosome missing from several different places, which would explain his unusual presentation. Although, he did test him for muccopolysaccarides...we have had one previous positive and one negative...we are really hoping for another negative on that one. The tests should be back next week for him.

For True, because he's younger and we have less data, he felt there were too many directions to look in. However, the metabolic crisis he had a few days later, will really help in the search. If it doesn't give us an answer, it will likely give us a direction to keep going in. His tests should be back at the end of next week or early the following week.

So that's it! The latest update! Take a minute and look at the new slide show of pictures from our trip. And if you can, take a minute and leave us a msg on the guestbook page!

We'd love to hear from you!
love
deb for the gang

Tuesday, May 23, 2006 5:31 PM CDT

I know! I know!!!! WAAaaaaAaaaY behind schedule around here! We have been so busy purging the house and having two yard sales, packing boxes, packing suitcases, painting, cleaning, shining, weeding, sprucing that I haven't been writing!

We are off to Boston this week to take the boys to see a metabolic specialist. I hope he will have some answers or at least steer us in the way of getting some. We will also be asking for doctor referrals in New England and it will be good to have referrals from a doc we trust.

From Boston we go to Maine for a bit to look for a place to live and do some other business in preparation of our move! We are very excited and wish we could do it tomorrow! We aren't sure of a timeline yet but hopefully sooner than later.

We have been in contact with a great church up there...they have been super helpful with resources and such. Both the pastors have invited us to their houses while we are there...for a meal/hangout time. We will get to see my brother and our friends the Gaetjens and Tobins while we are gone...we are very much looking forward to it.

Leave a guestbook msg so I know that even though I haven't been writing, we read and it would be good to know if people are still interested in reading!

love
deb for the gang

Tuesday, May 9, 2006 5:51 AM CDT

Been having some computer problems...but I promise to update thursday or friday. We are off to Vanderbilt this morning.

deb for the gang

Thursday, April 20, 2006 2:08 PM CDT

Sorry its been awhile...didn't realize I had gone so long without updating. Things have been immensely busy!

Our big news is that we have decided to move to Maine! We are very exciting and have someone coming over tonight to make an offer on our house (we haven't even put it on the market yet!) So, things are moving right along! I am packing up stuff to sell and stuff to move, along with going through boxes of mementoes from my mom's house and deciding what to save and what to discard...crazy time!

We are still planning to go to Boston/Maine, etc at the end of May for about ten days. The boys are going to see the Metabolic doctor at the beginning of our trip and we are hoping to find some answers. We totally trust this doc so we will be able to feel confident in his ideas.

The kids are all fine...the big kids are excited about moving...most of the time...but they are thrilled there are no school uniforms there! Bliss turns five on Monday so that is big news around here, too!

Nothing much else to report...or else I'm just to scatterbrained to think of it!

thanks for reading...sign our book...its been a little quiet lately!

love
deb for the gang!

Friday, April 7, 2006 7:27 PM CDT

Hello everyone

Thanks for checking in!

I am still completely overwhelmed in dealing with all the business and legal junk from my mom's estate. Its a real chore, I tell you! On Monday, I plan to start working on her house and getting out our family momento's and so forth.

Yesterday was my mom's birthday. For the past twelve years I have given a luncheon for her and her close friends. She, being the organizer she was, gave me the guest list about six weeks before so I knew who she had wanted to invite this year and we had it anyway. However, spending 4-5 hours a day dealing with estate and legal junk, I didn't do it at my house, we went to a restaurant. It was nice to be with her friends and Bliss, but sad at the same time...its still very surreal to me.

True sees the geneticist on the 17th so I am interested to see if her opinion lines up with the endocrinologist...that True has a metabolic disease. She saw him when he was about 3 or 4 months old and really was the first person to point out some issues he had. He also has his 15 month checkup coming up and I can hardly believe he is that old already! He has his speech and OT evals next week...I suspect we will start back to speech right away and maybe just leave OT on consult, but we will see.

Gaige has been doing okay. He has a pretty high blood sugar at school yesterday, which was very unusual for us. When his hypoglycemia first started, they mentioned that he could be in the 'honeymoon phase' of diabetes so I don't know if that one high is telling or not. We got his monthly hormone infusion in the mail this week. I am going Wednesday to get trained on how to give it...the needle is REALLY long...yikes for both of us! Thankfully, they also sent numbing cream for the site...none for mom's nerves though!

Bliss is doing well...charming as ever! She still wants to be a pediatric neurologist but has decided that she is only going to do it on Tuesdays and Saturdays because she wants to stay home with her 8 children the other days. What a riot! She is so smart, its amazes me and I hope she wont be terribly bored in kindergarten...she already talks a LOT, if she is bored I imagine that will really be a challenge for her.

We have decided to take both boys to see Dr Korson in Boston. He was Andrew's metabolicist. We had been planning to take Gaige in February but post-poned and now the endocrinologist here is referring True to him also. So we are going to make a big trip out of it. We have a lot of friends in New England and are going to spend the bulk of our time in Portland, Maine and are looking forward to getting away. Oddly enough, the only available appoiontment they had for months was on May 26th...the anniversary of Andrew's death....I'm still not sure if that is poetic or crazy.

Well that's the basics with us. We love hearing from you...dont' forget the guestbook!

love
deb for the gang

Thursday, March 23, 2006 11:31 AM CST

Well finally, a real update after that very long break.

Many of you may know, but mother was diagnosed with leukemia on March 3rd and have been praying for her. She got a brain bleed on the 11th and died the next morning. We miss her terribly...she left a huge void, but we know we were so very blessed to be her, daughter, grandchild and son-in-law.

Now on to the kiddos...Gaige has been doing pretty well. We saw his endocrinologist this month and his puberty is advancing way too quickly so we are going to have to start the monthly injections at home. He turned 7 in January and with some recent medication changes is doing as well as I can ever remember. At this point, there are some behavioral things that medication can't fix and we are just trying to find a way to live comfortably with them. He is finishing up 1st Grade!

Bliss is doing well. We have started back on Baclofen (a muscle relaxer) because she is having a lot of leg pain and some tickles (neuropathy). We are doing soem stretching on her too...Her ankles and calves are incredibly tight...I pray they don't get worse or someday she may need surgery. She requested to stop ballet and since I am already missing her when she starts kindergarten in the Fall, I figured this our time to just enjoy eachother.

True is keeping us on our toes! He was in the hospital twice in January for hypoglycemia and we made three trips to Vanderbilt/Nashville to see some of his specialists there. They did a slew of new allergy testing and out of 21 things, he was allergic to 13! Poor guy! However, we are on a schedule to trial foods now...we started with white potatoes, which he did okay with...although we did have some skin issues and constipation that we treated with meds. We just trialed chicken but he is allergic to it, apparently. Next is turkey...we are just waiting for Vanderbilt to give us the go-ahead!

True's hypoglycemia is being evaluation and they are looking for metabolic diseases, NOT what I wanted to hear! The Cranio-facial team is considering cranial reconstruction surgery for him...we go back in August...am hoping we can avoid it, especially now that my mom is gone. He is thriving in therapy and walking well now. We are still trying to figure out if he needs braces but are trying to be conservative with them.

We are gearing back up for Andrew's ball project and will keep you posted as it nears!

Thanks for your prayers and thoughts...please sign the guestbook!

love
deb for the gang!

Monday, March 6, 2006 0:43 AM CST

I know its been a LONG while...longer than I thought. The kids are stable right now, although there are updates to post. However, on March 3rd, my mom (and only living extended family member) was diagnosed with aggressive leukemia. Some of our friends might be checking on her here but we set up her own site. Its www.caringbridge.org/visit/mrskathy ...feel free to stop by!

pray for us!
deb

Wednesday, December 14, 2005 0:55 AM CST

For now, this page will be silent. There are extenuating circumstances in our lives right now.

However, my passion is to help other families who are going through similar situations with thier children. If you need me for anything, please email.

If you would like to email for update, we would welcome that. Our email is: VisibleWorship@aol.com

thank you so much for your support, and as always, feel free to sign our guestbook.

Check back mid-january, early-february

love
deb for the gang

Wednesday, December 14, 2005 0:55 AM CST

For now, this page will be silent. There are extenuating circumstances in our lives right now.

However, my passion is to help other families who are going through similar situations with thier children. If you need me for anything, please email.

If you would like to email for update, we would welcome that. Our email is: VisibleWorship@aol.com

thank you so much for your support, and as always, feel free to sign our guestbook.

Check back mid-january, early-february

love
deb for the gang

Monday, November 28, 2005 11:26 AM CST

Wow, I didn't realize it had been so long!

I have been busy trying to finish moving all our bedrooms around and decorating them, so I could decorate for christmas. I am almost done with it all!

Well, the Berardinelli-Seip syndrome has been ruled out! It was so rare that it would be have been a challenge but I am a little disappointed because it sounded just like him.

I know some people would freak out about a diagnosis but for me, it doesn't change anything that matters. Its like getting everything in your car...you got your luggage, snacks, a map, full tank of gas...but you don't know where you are going...AND once you do, there's a bunch of different ways to get there.

The destination is the diagnosis and the things in the car are the symptoms. The car doesn't change once you know the destination, but it sure is nice to know WHERE you are going even if you know there are lots of ways to get there (prognosis).

So, yes, I wish I knew WHERE we were going for Gaige...but I know now...we are going to Boston to see if our dear Mark Korson (Andrew's doc) can figure it all out. He's not positive he can...I tell ya, he's got Gaige Wells syndrome!

Bliss hasn't been feeling great the past couple of days but can't tell us what exactly is wrong...maybe a case of the blues? its been rainy.

True is stable. We are still waiting for all that paperwork with the adoption and for the insurance to go to Cinci to be approved (our 3rd appeal). Its a lot to bear, especially when you have NO control! Anyway, he is doing great...cutting two teeth (that seem to be misplaced?) and keeping me up for hours in the night, hopefully passing when the teeth come in. He has about five baby signs now...bye bye, eat, more, play and night-night. He says one word 'clap' and claps his hand...but it sounds like 'ga'. He will say mama and dada indescriminately...can't believe he wont sign or sday them for our attention yet...maybe one day! ha ha!

Andrew's first word was 'bite'...like...zI want to taste a bite of that food! If you ever saw him, that was very appropriate...dont know what clap means yet! Maybe like we already know...that True is almost always Happy!

We'd love to hear from you via guestbook (no one has signed it in a long time) or via email...

deb for the gang!

Tuesday, November 15, 2005 8:31 PM CST

Is it only Tuesday? This has been a long week already!

I will save the most indepth news for last.

We still need God to breakthrough a lot of redtape regarding our adoption and the insurance paying for True to go to Cincinnati. This stuff so bogs me down and its often just a stall when they know everything is going to be approved in the long run...but that's another story.

Bliss and True saw our wonderful neuro today. He encouraged us to keep pushing Bliss and she impressed him by telling him that she wants to be a Pediatric Neurologist so she can fix kids legs. He's in a wheelchair so he especially loved that!

We talked about a lot of thing with True but I told him our PT was puzzled because he only wants to use his right arm and left leg. Most kids would be weak on the same side...this is quite unusual. Anyway, he said its possible that True has a small spinal lesion. He did have a normal spinal MRI but he said the lesion is probably very small and can not be detected by MRI. So I guess we will have to wait and see what happens.

Now for the really crazy news. I guess thats a wierd word to use but its still boggling my mind.

Gaige's geneticist and endocrinologist have done everything to try to diagnose Gaige. They had a bunch of dead ends so they were going to send us to see Andrew's metabolicist in Boston. The geneticist had pulled his chart so she could write the letter to the insurance company about going to Boston. She decided just to look over everything ONE more time.

She emailed me last night and told me she was almost certain he has a disease called Berardinelli-Seip Syndrom, which is a lipodystrophy. Lipodystrophy is where you have no body fat left and are just muscle. This particular syndrome has a lot of other things that fit too...it really does sound like him.

Andrew's mitochondrial disease is pretty rare, True's Eosinophilic disorder is pretty rare...but this...it DEFINES rare! One in 12 million...that means in New York City there might be ONE person with it...That also means only about 25 in the United States. There is only one place in the US that researches it. Southwestern in Dallas...I called them today to see if I could get in touch with another parent who maybe could give me a crash course. They called and have asked for a ton of information and pictures of his body. I guess its so rare they are interested in anything they can learn from anyone.

http://www8.utsouthwestern.edu/utsw/cda/dept105805/files/106924.html

if you want to read up on it...cut and paste that link. If you do a search, you mind find lipodystrophy linked to AIDS a lot...this is an acquired form (emaciated people have lipodystrophy) and no, Gaige does not have AIDS.

Will keep everyone posted. I am in research mode and going to bonkers trying to understand all the very technical data that is out there.

thanks for the prayers and dont' forget to sign the guestbook!

love
deb for the gang!

Friday, November 11, 2005 1:43 PM CST

Hello All!

I know I owe some folks emails and am late on everything lately...sorry about that!

Overall everyone is pretty stable, for them. We met our new pediatrician today and that was pretty exciting! I long for a good pediatrician so I have high hopes. Its not always the drs that are the issue but the staff or the setup. I checked this guy out a lot so I think its going to be a good fit. He is perfectly comfortable having me in the drivers seat and letting the specialists do their part (True alone, has ten now) and he will fill in the gaps. He was very personable and I like that!

We have True's IFSP meeting in the mornign to set new goals for the next six months. I can't wait for Speech and OT to start back...its been months since he has had them because we have been on waiting lists. He is supposed to start soon though.

The birthfather papers still aren't signed b/c of a disagreement with our worker and the attorney on how they need to be done. Hopefully it will be resolved before the birthfather has a change of heart.

We'd love to hear from you!

love
deb for the gang

Monday, October 31, 2005 2:33 PM CST

Hi everyone!

I really meant to get to this before now, but its been a busy time! Not only do we have the usual stuff going on but we are redecorating and shuffling three of our bedrooms so time is short!

Bliss' photoshoot was great! I included some pictures below. I had 8 pictures but its only showing four for some reason. she is photographed with two other girls and the ad is going to say something like "3 in every 100,000 children will get a brain tumor, we are already working to give them better treatment." or something. Anyway, she had fun playing wiht the other two gals...she was much younger but they had a good time! She would love to do it again but I dont have time to pursue that sort of thing. So for now, she is happy about ballet class!

Gaige's labwork all came back negative. The Dr was really surprised although we were all very thankful that Neurofibromatosis has definitely been ruled out. So they are at a loss of what is causing the hypoglycemia but we are proceding as we have been and still starting the hormone injections soon. We are definitely going to Boston now, we hope to go in March so we can use our income tax refund to pay for us to go. We are going to take the whole family b/c I can't leave True with anyone and can't handle Gaige and True alone so we are going to make a family trip out of it. They have openings in December and January but we don't have the funds to get there that soon.

Nothing really new with True...he's happy and we are happy! His birthfather finally agreed to sign the papers, so a HUGE answer to prayer and we can finally breathe again!

We'd love to hear from you! Sign the guestbook if you get a chance!

love
deb for the gang!

Sunday, October 23, 2005 8:15 AM CDT

Hi all...

well the big news around here is...

If you ever met Bliss in person, you know she just twinkles! She's also one smart cookie but the twinkling is the main subject. Last week when True was in the hospital, I was reading the hospital newsletter and they were looking for submissions of kids pictures. They were going to select 6 kids for all their print stuff for the year. I submitted it that day, but it was past the printed deadline (although it was a misprint). Anyway, they called yesterday and she was chosen! We are just thrilled! She has a "PHOTOSHOOT" Tuesday! The boys health has taken so much time away from her (8 hospitilazations this year, 7 since May) that its great she is getting something for HER! We are really hoping she gets put on a Billboard or something...wouldn't that be coolest? There's a LeBonheur billboard right by our house. I will post pictures of her photoshoot on the here next week!

Hope you are enjoying some great fall weather!

love
deb for the gang

Wednesday, October 19, 2005 3:08 PM CDT

Nothing much to report this week!

I had an IEP meeting for Gaige at his school today. I don't understand why they have to be so difficult. It really doesn't make sense. I dream of a school system that truly recognizes that the more they do for special kids the younger they are, the better chance they have of integrating normally in their world. There was nine of them, and one of me. I wanted Fred to be there but he has had to take off so much this month b;/c of the medical stuff, we just couldn't swing it. I finally told them we would pause the meeting until we could come back when he could attend. They just want to push you around. I held my ground on some legal issues and requested independant studies for gaige...who I will choose and they legally, have to pay for...but it gets really weary. Why do they have to be like this?

True is doing alright. We are getting the seizure medicine compounded because all of them have milk products, so we are picking it up tomorrow and going to see if it helps.

Bliss is doing great also. My mom is taking me out to lunch tomorrow for my birthday. She and True will come with...but they don't have a kids meal. I told her she could share my salad. She likes salad but then she pipes up and says "I dont' want to eat salad...I want steak!" Boy I hope she marries a rich man! Escargot and steak...at age four!!!

Check out the new picture show...Its 12 new pictures. I need to add some new ones of Andrew but haven't had time to dig them out and scan them. enjoy the photos. Dont' forget to sign the guestbook!

love
deb for the gang

Saturday, October 15, 2005 11:01 AM CDT

We are home!


Boy I'm tired! Those things they call parent beds leave much to the imagination!

True did pretty well considering he could only stay in one area the whole time. I will have to post a picture of him and bliss in his bed with his 'special' hat on.

The VEEG showed myoclonus (which we knew) and startle seizures. I knew he startled super easy and that he can be a very light sleeper (which was actually startles waking him up). That explains how poorly he sleeps!

They are starting us on a seizure medicine and reviewing the tapes. They monitor while you are in there but then they review the whole taping to make sure they got everything and they look at all sorts of brain activity too. We will get that report in a couple of weeks. We see the neuro in about three weeks to get all the info. So that's the scoop there.

Nothing much to resport with the other two.

Hope everyone has a good weekend! Its going to be nice here...in the low 80s but WAY too hot for my taste!

Dont' forget to sign the guestbook and let us know that someone out in cyberspace is reading this! It hasn't had any entries in a while!

love
deb for the gang...

Friday, October 14, 2005 4:05 PM CDT

We are home!


Boy I'm tired! Those things they call parent beds leave much to the imagination!

True did pretty well considering he could only stay in one area the whole time. I will have to post a picture of him and bliss in his bed with his 'special' hat on.

The VEEG showed myoclonus (which we knew) and startle seizures. I knew he startled super easy and that he can be a very light sleeper (which was actually startles waking him up). That explains how poorly he sleeps!

They are starting us on a seizure medicine and reviewing the tapes. They monitor while you are in there but then they review the whole taping to make sure they got everything and they look at all sorts of brain activity too. We will get that report in a couple of weeks. We see the neuro in about three weeks to get all the info. So that's the scoop there.

Nothing much to resport with the other two.

Hope everyone has a good weekend! Its going to be nice here...in the low 80s but WAY too hot for my taste!

Dont' forget to sign the guestbook and let us know that someone out in cyberspace is reading this! It hasn't had any entries in a while!

love
deb for the gang...

Tuesday, October 11, 2005 5:17 PM CDT

Hi all!

Not much to report here...Bliss, True and Fred are battling colds...so for True's mystery fever, mystery solved!

True goes in tomorrow morning and will be discharged Friday around lunch. He will be monitored for seizures and will have about 30 wires/leads attatched...that will be fun! I wont be allowed to leave him at all, even whle he's snoozing, so please visit if you can!

No word back on Gaige's tests...I should hear Friday, or maybe Thursday...thats her general callback days.

Please pray for a breakthrough in our finances...just been one thing after another lately and its just more added stress.

thanks for checking in on us!
deb for the gang!

Saturday, October 8, 2005 7:46 AM CDT

Hi there

I tried to update before now but the author page was down.

The MRI went alright...of course I had everything set up ahead of time b/c Gaige just doesn't do well in that setting and then the nurses on the floor botched it all. So it was done two hours after it was scheduled! Joy! The good news is that the MRI was negative...no tumor. That means we will learn to give Lupron injections to Gaige every 28 days.

We saw Gaige's endocrinologist the day before. Based on some measurements, she thinks his puberty is advancing quickly so the treatments will be started as soon as they are approved and delivered. My biggest concern is that he has lost over a pound and gained 2 centimeters...in 3 months. Two years ago he weighed 9 pounds more than he does now. Those who know him in the REAL person knows he has NO body fat left...which means he will start burning up his muscle...this concerns me a great deal!

She ran 16 different blood tests...including the one for Neurofibromatosis type 1. This disease has been on the table for a long time but he didnt have enough of the sx's to warrant a $1200 blood test. The endo and the geneticist decided now with the puberty issues (another sx) that it needed to be done. I don't know how long it takes to get back but I imagine quite a while. The endo is really great and really trying to figure Gaige out.

True is doing alright...been running a mystery 102 fever this week though. We were able to make an appointment for him to go to Cincinatti for January 9th...had to move it. Now I need to investigate some of the travel deals and see if we can swing any of them. He is still making good progress in Physical therapy and a smiley-smiley boy!

Bliss is great as usual. She did have an ER trip last night...she was standing on a box and fell. I didn't think anything of it...it was a stradle injury. She was bleeding a little...turned out to be just topical tears so that was a blessing. We got in and out of the ER side in under an hour...one of our favorite nurses was doing triage and she said 'frequent flyers club' had its privileges!

Nothing much else to report...just trying to catch up...am always behind on everything lately...including sleep!

We'd love to hear from you in the guestbook or email!

deb for the gang

Saturday, October 1, 2005 10:17 AM CDT

So I guess I'm a day late and a dollar short, too...haha...

Well the biopsy results are inconclusive. So I am having them sent to Cincinatti where they specialize in this disorder he may have. We also went ahead and made an appointment in January for there. We are going to have a fun late-winter...Cincinatti in January and Gaige to Boston in February or March...maybe we will at least see some snow!

Next couple of weeks are busy. Gaige sees the endocrinologist on Tuesday for follow up and some more blood work. The next day, he is being admitted at 6a for an MRI of his brain. They will be looking to see if he has a pituitary tumor. I think its a good idea for a child like him to get one every couple of years anyway. His last one was two years ago. We should be able to go home that night but since they have to do full anesthesia and with his hypoglycemia, he can't fast, they need to do it this way. I hope to hear back on it Thursday.

Gaige decided Karate was not for him, so he isn't doing it anymore. He said it hurt his legs too much and I think there was too much down time for him. We might try basketball in a couple of months but aren't sure he wont flip when he has to sit out.

Bliss has been asked to be a flower girl! She is excited. The wedding is not til May and its a gal that used to live with us, Krystal. She's very special to our family and even went with us to get Bliss and on our Make-a-wish trip to help with the kids. We are so excited for her!

Not too much to report on True. He's doing well in therapy and making little strides all the time. We just adore him! He has a hospital stay next week to test for seizures.

Will try to post later in the week after the MRI. Keep your guest book entries coming...we love them!

love
deb for the gang!

Wednesday, September 28, 2005 5:54 PM CDT

Sorry...

the very screwed-up nursing care through the school system has been taking up most of my free time.

I will update either tomorrow night or Friday sometime.

True sees the GI tomorrow to get the results of the biopsies. We will post about it soon.

thanks for checking in on us!

love
deb for the gang!

Tuesday, September 20, 2005 10:09 PM CDT

Sorry I am so behind on the page and thanks to you guys who remind me you want to know what is going on...you are such an encouragement to us!

I have been completely overwhelmed with just a lot going on with both the boys and trying to deal with a bunch of school problems with Gaige's education plan. I am even late updating the Caring Bridge page.

Gaige's tests have returned and he is far enough into puberty to require injections. They are going to start them every 28 days and then if we have to do them more often they will increase them as we go. Since Precocious puberty is relatively rare in boys, they are doing an MRI the first week of October to rule out a pituitary tumor. If he were to have one, he would have it taken out and that would fix it, if he does't have one then we will proceed with the shots. They are still quite puzzled with some of their other findings and are ordering more labs. However, from the genetic standpoint, he now needs to see a Metabolicist. So, we are once again going to have to travel. Andrew's doc in Boston is looking over Gaige's records and we will either go to see him or we will go to see a different doc in Philly. Our insurance case manager is willing to fight to get everything covered but we don't have the travel contacts we had when Andrew was sick and need to come up with funds (or donated frequent flyer miles) to travel. Gaige likes first grade and is making some progress here and there. He and dad started taking Karate this weekend...boy oh boy!

Bliss is doing well. She loves ballet...everything now is "how many more night-nights til ballet?" She is becoming an amatuer physical therapist and likes to play 'ferafy' with True and mimick what she sees his PT doing....very cute!

True just got an adaptive carseat/stroller. He loves being able to sit up and see everything! The big kids push him around the house and he just grins the whole time! He's still on formula only and has more food allergies coming to light...we aren't sure when he will be able to eat food. Wednesday, he is having a scope done in the OR to do some biopsies on his esophogus and GI tract. Hopefully this will give us the info we need to explain and decipher between all his feeding issues. He is having increased myoclonus (muscle twitching/tremoring/shaking/jerking) and is going to be in the hospital Oct 12-? for a few days to monitor him for seizures. Myoclonus is most often a type of seizures. Our neuro put him on seizure meds but it kept him up all night. He is still the most joyful little boy despite all his complex issues...we are so blessed to share life with him!

I am going to close asking you to pray for several things:
* We are having some issues with True's birthfather. They will almost assuredly resolve but are just one more thing for us to deal with.

*True as he has his endoscope this Wednesday. Pray they will find the info we need to know his future of eating.

*Gaige and his MRI...last time he didn't handle the sedation well and will be doing full anesthesia this time.

*As we select a doctor to take Gaige to...pray for the insurance to agree to pay and for provision for traveling monies.

Thanks so much for taking the time to read this...it means so much to us.

deb for the gang
www.LifeofLoveProject.org

Thursday, September 8, 2005 5:39 PM CDT

Hi all...

I would be remiss not to mention the hurricane. I have been quite consumed by it and having an urgency in me to do something besides donating money and things, which we have done too. I faxed my number to a bunch of places to offer help for displaced spec needs families in the Memphis area. So far, I have gotten one call and its been great to just be able to help them. Our church was contacted today about being one of five places in the city to help the Red Cross process folks here...so I am looking forward to helping with this in the weeks to come.

On to our crew. We got all of Gaige's endocrine testing back and he has started puberty. They will start with injections every 28 days and then may have to increase depending on his levels. Before we can proceed with this, he has to have another MRI to rule out a pituitary tumor...not a cancer thing but if there is a growth it can make the endrocrine system go haywire. Our doc was presenting his case to her class today and will call again tomorrow with more ideas. They are still not sure what to make of the hypoglycemia and feel it could be early Diabetes type I which is insulin dependant. I am not sure I buy that theory yet, since we deal with lows most of the time but we will see. There is still the possibility of a metabolic disease but the docs here are out of ideas as well. Its frustrating to say the least.

We are getting ready to go to war with his school program on the 19th...its just been one thing after another and I think we are ready to push without letting up this time!

Bliss loved ballet...wouldn't you know it? My camera batteries died! We will have to take them this week. There are 27 ballerina's in her class!!! That's a lot of pink!

True is starting his seizure meds tomorrow and I am hoping we find a good level that wont zone out his personality. Also, my intuition was right...True's helmet is not correct. I finally emailed pics to the top guy in the manufacturing company and he called today to tell me he needs to get this one made. So he's having a couple of weeks break and then we have to start over...ick! True's GI issues are still flaring...the GI doc is supposed to be scheduling a scope in the OR to see what is going on...so we have that to look forward to!

that's about it for us!

thanks for being here...
deb for the gang!

Wednesday, August 31, 2005 4:02 PM CDT

Hello everyone...

First off, I hope all our regular readers are safe...I don't know of anyone in Louisianna right off hand, but I'm praying nonetheless. We have told our church we are willing to host a single mom or young family with one child, so if anyone knows someone in desperate need who is heading to Memphis, let us know.

Gaige is still having a hard time adjusting...the bus company keeps making a lot of unneccesary changes, with his aid for the bus and that just doens't work well for him. We had a two hour meltdown on Monday over it...exhausting! So as soon as I get the protocol letter for his hypoglycemia from the doc, I am going to have to call a meeting to deal with all of it.

True had his neuro appointment yesterday. He put True on seizure medicines to see if it helps the myoclonus (jerking, twitching, shaking) and helps him sleep through it better. He also changed the 'neuromotor disorder' to Cerebral palsy, which wasn't much of a surprise. True's special chair should arrive next week sometime and I am anxious to be out of the infant seat...that thing is so heavy! True continues to work hard in therapy and is making a little progress here and there.

Bliss is holding court...royal court! Yesterday in the neuro's office, it was packed. She got out of the stroller and was standing where she could see the TV. Before I knew it a girl about 9yrs offered to share her preschool-sized-chair with her. Bliss sat down grinning from ear to ear. Before I knew it, this girls brother, who was probably 11 or so...comes walking from across the room, carrying a little chair. He walked up and gave it to Bliss! I said "you are one spoiled princess" while another mom and I laughed at what was happening. Then Bliss batted her eyes with a smile and said "But I forgot to wear my Tiara today!" What a hoot...just another day in the life of royalty! That girl just charms people when she's not even trying! Only six more nights til ballet class...that's what she's excited about!

Fred is going well for Fred...he got a raise. I am about to look for a home for our dog/dogs who I am sure True is allergic to...that's about it!

thanks for your guestbook sign ins...they always give me a smile on a challenging day!

deb for the gang

Thursday, August 25, 2005 9:25 AM CDT

Hello everyone

sorry for not updating sooner...I was waiting for some phone calls and stuff first plus True was fussy over the weekend and it seems I needed to hold him a whole lot...so I was behind. Thanks to those of you who emailed b/c you were worried.

Gaige is still busy getting acclimated to school. He's been a little touchy, getting easily frustrated but I am sure its from the stress of getting into a new routine. When he got home yesterday, his sugar was 56...way too low! I found out he didn't like lunch and he didn't eat his afternoon snack, so that explains it. It appears the metabolic doc isn't interested in his case so we are looking at going back to Boston to see Andrew's metabolicist...of course, its a funding issue but its important b/c he needs to be a certain diet depending on the metabolics and we dont know which one until we have a firm diagnosis.

Bliss didn't have Botox. They were afraid since he is mild, that it might make her weak. They gave us some excercises to try to see if it helps, along with her ballet classes and reevaluate it in a few months. She was disappointed and cried yesterday when having to walk a little bit that she still wanted Botox. We see the neurologist for True next week and Bliss said she plans to talk to him about not getting Botox...she's a little mad...what a diva!

True's allergy appointment couldn't have gone better. She really spent a lot of time taking in his history regarding feeding and reflux and such. She said it was going to be a very long time before we would be able to feed him any foods. She was concerned that he hasn't gotten better on the specialized formula and feels he has Eosiniophilic esophagitis and gastritis (check www.apfed.org for more info). this is a sad diagnosis but we knew it was a possibility. He will start eating shaved ice to keep up his oral motor skills...I am already trying to figure out how to make a ice-birthday-cake-scuplture-thingie. She feels he may still need the gtube (feeding tube) and fundoplication...she is consuting our GI doc. She was really a great doc.

Thanks for reading...dont' forget the guestbook!

love
deb for the gang!

Sunday, August 14, 2005 12:53 AM CDT

Hello All!

Hope you had a good weekend! Fred had to work..we missed daddy...having him home a year will really spoil you!

Gaige's blood sugars have continued to be a problem. Ever since May, I have been told to check it two hours after he gets in bed and his numbers have been in the 60's and low 70s (norm is 80-110)...so not terribly low, but we can't let him go all night without doing something. We had to wake him to drink some milk last night and he didn't get back to sleep. Then he woke everyone up...so we are looking forward to a nap today! I did talk to his endocrinologist and most of the testing is not pointing in the direction of diabetes (didn't I tell them that?) So they have no idea what to do with him...doesn't that sound familiar??? We did talk to our geneticist and she wants him to see a Metabolicist...familiarity I rather not be reminded of there.

Gaige starts school tomorrow. He is excited. Bliss is excited. Mom is REALLY excited! His nursing piece is not in place and SOMEHOW I got roped into him being a reg room with an aide and then our for resource...I'm not sure he is ready for this, but we will see.

Bliss gets Botox on Thursday. She chose a new pair of shoes for her reward! What a girlie-girl! She is anxious for her 'school supplies' so she can do some new art!

True has two little teeth...so sad...I love the 'nothing but gums' look! He's recuperated from his anaphylactis this week and the bump on his head is nearly gone. I imagine the helmet will be back on this week sometime.

True has a few appts...beside his four therapy sessions...he sees a new allergist on Tuesday who can test for more things than other one we saw. He also has an appointed at a seating clinic to get fitted and order a special feeding chair and car seat...they kinda let the parents decide ultimately and I have no clue what is best...research to do!

That about wraps it up for us right now. Thanks for your prayers on Gaige being home...it was only hard the last couple of days. Please pray for Bliss' botox shots on Thursday, if you remember!

love
deb for the gang!

Tuesday, August 9, 2005 11:15 PM CDT

Happy Humpday (wednesday)!

Gaige is still doing pretty well being home 24/7...thanks for keeping the prayers up...they are working wonderfully! He had to go to the eye doc today and have his eyes diallated and did well also. Eyes were good...he doesn't have 20/20 vision, but not enough off to need glasses.

Gaige has had crazy blood sugars tonight but they finally seem stable (after checking every hour)...i am hoping all his testing will be back this week...so hopefully soon we will know about the sugar issues and the puberty problems.

I also found out, quite by accident that I somehow agreed for Gaige to put in the regular classroom as his homeroom and wont be with his friends and teachers from last year. He will share an aid with a little boy I got to meet today, who is very similar to Gaige. He will still be going out to resource for 14 hours a week, but its totally different than what we have done before with Andrew or Gaige. Pray he doesn't flip next week when they don't take him to his old teachers class.

True still has that knot on his head...obviously not a skin infection...not sure what it is. I really should take him into the pediatrician but have no one who can handle Gaige and it takes two people to take him to the dr. I did talk atg length with the doc last night and we decided to leave his helmet off until it heals. He said they probably would try to drain it and if that didn't work they would have to do some xray studies. I can't even get the helmet on over it.

Bliss is doing fine...I think Gaige is wearing her out! She has been extra tired! She is looking forward to Gaige going to school so she can resume her own routine. We found out she cleared the waiting list for Ballet and will start in September...she is very excited and can't wait to get shoes!

that's about all our news! We love hearing from you!

love to all!
deb for the gang!

Thursday, August 4, 2005 11:43 PM CDT

Hey everyone!

Thanks to the many of you who signed the guestbook this week...so much fun!

The best news is...WE HAVE a WASHER!!!! It's been almost a month, so we are excited!

True went to the GI today to talk about his reflux symptoms and so on. She agreed that most of his GI symptoms seem to be allergy-related and could be GERD also but not solely. She wants us to the allergist again this month and then see her back in September to decide about doing a scope and biopsy. She said feeding children like him is very time consuming and often yeilds little results. I don't remember if I shared he had just FIVE BITES of carrots a week ago and has had a ton of GI symptoms, including losing his voice. It will probably take another two weeks for his body to get back to baseline from the carrots and then we will trial sweet potatoes. This is such an overwhelming diagnosis!

The owie on True's head is still there...never did drain like they thought but I am taking a lot of airing out breaks for the helmet. He still isn't sleeping at night with it.

He cut his first tooth today...and it came up just like that! We have to do oral motor therapy with him and so I have my hands in his mouth all the time...nothing ever swelled or anything and then walla...a tooth! Oral therapy ought to be a lot of fun now!

We found out today the insurance approved special seating and therapy equipment for True today...so it will be exciting to have some new activities to do with him beside the swing and bouncy seat (which he is outgrowing).

Gaige has done very well actually! I am really proud of him...he loves cleaning projects...as long as I do them with him so he comes and asks me what he can do and that's been both productive and kept him focused on better behavior.

Bliss took a spill yesterday and has a big fat lip! Its so cute to hear her talk with it though...and she finally found something to eat today...she will be fine but she keeps asking for a bandaid!

Still no word about a job for Fred but we hold steadfast that God is going to provide something great!

Thanks for your thoughts and prayers!
love
deb for the gang

Monday, August 1, 2005 8:45 AM CDT

Is it morning? Lets see...True and I got home from the ER about 2am or so.

I got him up for his Midnight feeding...seems so against nature to have to WAKE up your baby to feed them...but that's the only way we can get enough calories in him. Anyway, he had a huge growth on the side of his head that wasn't there when he went to bed. I decided to go straight to the ER for two reasons...one is that there is no one that can watch/handle Gaige and he is home for two weeks...and the other is that thing anywhere on the face/head/brain area...I don't mess around with that stuff!

I was worried that the helmet might have pushed something the wrong way, thankfully that's not the case! The Dr thinks its an infection from his ezcema (from food allergies) and told me how to treat it. We were only there an hour...all of the countless ER visits I have had with the four kids, never have we even been seen in an hour, unless we came by ambulance and half the time, not even then! So I was pleased to get back home so quickly!

True is still getting used to his helmet...he's actually doing pretty well. We should start sleeping until that midnight feeding in it tonight...and all night by the end of the week.

Our family has always LOOKED very different from other families and so we are used to being stared at...but with the helmet...its been interesting. Half the people laugh because they think you have him dressed up or something...others point and stare and a few others say "oh yeah, my nephew had one of those", which is always good to hear. I know our family is a picture of the kingdom of God so I guess more people will get a chance to SEE us now that True has his helmet.

Well thats all that's new around her. Thanks for keeping up with us!

deb
for the gang!

Tuesday, July 26, 2005 11:16 PM CDT

Hi everyone

How are you surviving? The heat is just crazy! Yesterday we were running too many errands in heat that reached 108!!!!

Did you see the picture of True's helmet above? Doesn't he look cute (and a little strange) but he's still just adorable! The helmet looked like an EGG when we got it (ironic since he's super allergic) but I painted it to make him look HIP! Healthwise, I am wading through a kids food allergy book trying to figure out what in the world I am going to feed this little guy! Egg yolks and whites, Milk, Soy and Wheat are in just about everything! We are still waiting for them to schedule the EEG.

No word on Gaige's test results. He has had a couple rough mornings b/c of problems with substitute bus drivrs and his aide calling in sick. I had to take him to school, which put him out of his routine and caused him to be out of sorts. Other than this, overall his behavior has been a bit better since we increased one of his meds.

Bliss is being a super helper and such fun. Her Botox injections for her legs are scheduled for the 18th. Poor baby!

Fred has had some strong job leads...I expect this week or next he will have secured a new position.

I am still running way behind. We have no washer b/c of funding issues for our plumbing problem (ie=broke) so that's wierd...of course everthing needs to be washed that usuallly doesn't...like curtains and so on. We have been able to make some income back but are still scraping to fix our other uh-ohs...its been trying but forced me to cook a lot more, which is probably a good thing!

Thanks for checking in on us...it really means a lot! Don't forget to sign the guestbook!

love
deb for the gang!

Wednesday, July 20, 2005 7:33 AM CDT

Sorry its been so long since I REALLY updated this...and thanks to those of you who emailed to make sure we were okay.

Gaige didn't do too badly with the hospital stay. The time he was required to fast was the worst and they ended up changing it to a 2-hr instead of the original 5-hr she ordered since he was getting so upset. His blood sugar jumped to over 200 which made them almost send us to the ER since the testing center where we were admitted doesn't deal with that (who can understand why?), but it came back down quickly enough.

Thanks to Mrs Evette and Miss Shemika, Mr Bill and Mrs Tonya, Ms Trenica, Nana, Mr Ray and Auntie Krystal who come to visit...I definitely think it made him easier on him, and me to have lots of people to distract him! We used quarters to motivate him to be good and other people contributed...he had quite a stash to spend at the store when we left! Even the nurses joined in!

The testing is going to take a few more weeks to get back. The current theories they have, don't really hold water in my book (like its one of his medications even though the neurologist and I can find no data on this)...so we will have to wait and see what all those tests reveal. We did get some testing back and his bone age (rate of bone growth) is advanced about 13 months. Some of his hormones are elevated but not the ones they expected...as usual, Gaige continues to be a puzzle. I plan to call his geneticist and get her to consult with the endocrinologist and see what they can come up with. We are hoping they will find something that could explain some of his behaviors and hopefully helps us manage them better so we can all improve our life quality.

On the TRUE front...he continues to increase episodes of myoclonus, both while sleeping and awake. I talked to our neurologist and he wants to do a 24-48 hour video EEG. This is done in the hospital and you try to give them as normal a day as possible (in the hospital room with 27 leads attatched to their heads) and they are able to use the video to coincide with what we might be able to SEE so we know what is going on at home. You can have myoclonus witout seizures so we will see what the EEG says.

True's molding helmet for his plagiocephaly is supposed to be in just any day. I am trying to think of a creative way to decorate it...most people use stickers and change them up.

Fred is working with a friend this week but has a really good job lead on the horizon...hopefully we will know when he will start by the end of the week.

The kids are taking swimming lessons. Gaige loves it of course and you can barely keep him from staying under (b/c he WANTS to be under and thinks its a blast). Bliss is terrified of getting her face wet (another of her sensory issues) and gets very anxious. Their instructor is a spec ed teacher and just plugs along with them...she's really great!

We are still without a washer and trying to find the cheapest way to fix our plumbing issue. There is standing water under the house and he says our house is sinking on one side...oh joy! I have to find out if that is covered...just more craziness.

thanks so much for reading...promise it wont be so long until I update again.

deb for the gang...

Monday, July 18, 2005 9:57 PM CDT

Hey there

thanks to those of you who have emailed wondering if we were okay.

Lots going on of course. I am going to update tomorrow night. I have been trying to catch the dr before I did it. We were supposed to talk today but played phone tag and kept missing each other. So we will try again tomorrow.

check back tuesday night.

thanks and love
deb for the gang

Monday, July 11, 2005 8:34 PM CDT

Hello everyone!

Well life is still keeping us on our toes...but we are adjusting to doing dishes in the sink, going to the bathroom to use water and having no washer...hopefully that wont be much longer...but we press on! Fred did get to work with a friend today and will be able to again on Wednesday. We are very thankful.

Tomorrow is the big day for Gaige. We tried the med that the DR wanted us to try to use to calm him while he is in the hospital and it did not go well! In fact, he had a bad reaction (meaning it worked the opposite way it was supposed to). He actually ran out the door and away and it took about ten minutes, a call to the police (who never showed up) and three women at a yard sale to help me catch him. I was scared...he was out of his mind really. So no more of the medicine. So the gist of it is that we face tomorrow without a backup plan. Scary...last time he stemmed and kicked. Children with any form of autism don't do well in unfamiliar places and are so anxious they have all kinds of behaviors b/c they don't have the same kinds of coping mechanisms that the rest of us have. Please say many prayers. He will have to have 48 blood draws! We are goign to give him a reward each time he is still and cooperative...hope that works. He can turn it in at the end for a big reward. Since Gaige was a baby, my favorite thing to say about him is "The only predictable thing about Gaige is that he is unpredictable". I am hoping that means he is going to be fine about it all! I am praying the rewards motivate him!

Oh yeah...he will have a line in...so just one stick...that's less than at home with glucose checks!

True's helmet was approved and should come in this week they tell me. I have put his things on the back burner until Gaige is settled. True has been having a lot of myoclonus (jerking and movements from seizures) so I need to follow up on it. I don't think its harmful so I would rather wait on medicating him if we don't need to.

Bliss is well and full of LIFE!!!

Thanks for your prayers, emails, guestbook msgs and calls.

If you are free tomorrow and would like to visit Gaige, come on...distractions can be very helpful! (Remember to bring your parking ticket in for free parking.)

You can call my cell phone 292-5878 for info or you can call our room. The hospital number is 901-572-3000...I know we will be on the fifth floor but that's all I know.

thanks again!
love
deb and the gang

Thursday, July 7, 2005 9:44 PM CDT

Hello All!

Whoa! What a week! First we had Andrew's birthday on Monday...then during True's physical therapy on Tuesday, Bliss comes running in the therapy room and says "Somethin's happening!" I had just put a load of laundry in and something went awry with our plumbing and the kitchen was flooding. The joys of living in an old house (although I woulnd't have it any other way). So, poor Fred had to deal with that for the past couple of days. He got the sink and dishwasher working but the pipe to the washer is beyond his scope of capabilities. So we were trying to call a plumber today and didn't get in charge with the person we were looking for...financially this was going to be a stretch anyway (had to fix the AC last week). Then today after Fred got home, his boss called and said that he had to let him go...no warning...totally out of the blue...said Fred didn't do anything wrong...things were slowing down and he had to let someone go. Poor Fred is not taking it well...I feel so bad for him! So pray once again for Fred to find that perfect job! I know this was not it, but it was working for now.

True did go to the allergist yesterday and in the office he tested positive to eggs...which is in a ton of stuff! Negative results on a 5.5 month old are not conclusive and she told us that she knows he is allergic to milk even though it didn't show up...but she said in six months he will test positive to more. Consider him an allergy kid she said. Last night though...he has had major reactions on his back...poor guy! He reacted to several things in the row where they tested for Milk, Wheat, soy and potatoes. So we are still goign to wait to start solids of any kind. His blood work is still showing twice the number of eosinophils for a child his age...so they are still considering that he maybe have an eosinophilic disease. He is likely getting an endoscope in August. So for now, we are going to put the surgery on hold.

Anyone interested in coming to visit Gaige next Tuesday, please let me know. Distractions are going to be the way to keep him maintained. We are going to play around with the medicine that the neurologist gave us to help keep him calm over the weekend...hopefully we will find a dose to help in the hospital.

thanks so much for reading and writing...we love you guys!

Happy Birthday in heaven to our sweet friend Michaela who is spending her 12th birthday in heaven tomorrow.

deb for the gang

Tuesday, July 5, 2005 9:37 AM CDT

Happy Birthday to our sweet Andrew!

Yesterday I woke to the sound of a bouncing basketball. Fred let me sleep in a little...it was Gaige and it only lasted a few seconds. But it was a reminder that two basketballs should have been bouncing. Andrew would be 9 years old and I can't imagine what an amazing basketball player he would have been by now. I know he would have been a super-brother to the younger three...and he is still their brother...and still loving them.

The night Andrew told us all goodbye (about 36 hours before he got his true freedom), he wouldn't let me leave the room unless I told him it was okay for him to miss me. I tried to convince him that he would be so overwhelmed with Jesus and everything going on in Heaven that he wouldn't miss us. He was steadfast...and said "no, mama, I am going to miss you!" I finally agreed and it took a while for me to realize what that all meant. He doesn't ache and miss us in the way we miss him, but I am quite sure he has a longing for us to be with him...and a longing to experience everything he is seeing and doing there in Heaven. Knowing that, sure makes heaven sweeter.

We went out for breakfast...He loved going out for breakfast and probably could have eaten a "Tremendous 12" all by himself! Gaige wrote Andrew a note that says "I love Andrew b/c he's my best brother." Bliss still struggles with him not ever coming back or that we can't go and see him. We ate chocolate cake after dinner and put to bed another bitter-sweet day. This is our third time to celebrate his birthday without him with us.

To those of you who were privileged to know him, we are so happy to have that connection with you. Our friend Pete, whom we met after Andrew went to live with Jesus, says something I love...he says that Andrew sounds like an amazing kid...and he is so excited he gets to spend eternity with him!

**********************************************
This week is a little on the light side...
Tuesday: Physical Therapy for True
Wednesday: Feeding Therapy for True
Allergist for True
Thursday: Occupation Therapy for True
*********************************************

Our main computer crashed so progress is slow. I will update thursday or friday. Thanks for checking in...it means a lot to know you care. Dont' forget to sign the guestbook.

deb for the gang

Tuesday, July 5, 2005 9:37 AM CDT

Happy Birthday to our sweet Andrew!

Yesterday I woke to the sound of a bouncing basketball. Fred let me sleep in a little...it was Gaige and it only lasted a few seconds. But it was a reminder that two basketballs should have been bouncing. Andrew would be 9 years old and I can't imagine what an amazing basketball player he would have been by now. I know he would have been a super-brother to the younger three...and he is still their brother...and still loving them.

The night Andrew told us all goodbye (about 36 hours before he got his true freedom), he wouldn't let me leave the room unless I told him it was okay for him to miss me. I tried to convince him that he would be so overwhelmed with Jesus and everything going on in Heaven that he wouldn't miss us. He was steadfast...and said "no, mama, I am going to miss you!" I finally agreed and it took a while for me to realize what that all meant. He doesn't ache and miss us in the way we miss him, but I am quite sure he has a longing for us to be with him...and a longing to experience everything he is seeing and doing there in Heaven. Knowing that, sure makes heaven sweeter.

We went out for breakfast...He loved going out for breakfast and probably could have eaten a "Tremendous 12" all by himself! Gaige wrote Andrew a note that says "I love Andrew b/c he's my best brother." Bliss still struggles with him not ever coming back or that we can't go and see him. We ate chocolate cake after dinner and put to bed another bitter-sweet day. This is our third time to celebrate his birthday without him with us.

To those of you who were privileged to know him, we are so happy to have that connection with you. Our friend Pete, whom we met after Andrew went to live with Jesus, says something I love...he says that Andrew sounds like an amazing kid...and he is so excited he gets to spend eternity with him!

**********************************************
This week is a little on the light side...
Tuesday: Physical Therapy for True
Wednesday: Feeding Therapy for True
Allergist for True
Thursday: Occupation Therapy for True
*********************************************

Our main computer crashed so progress is slow. I will update thursday or friday. Thanks for checking in...it means a lot to know you care. Dont' forget to sign the guestbook.

deb for the gang

Wednesday, June 29, 2005 9:28 AM CDT

Hi All!

Busy couple of days...trying to cram all of True's therapy in so we can get out of town.

Yesterday True was measured for his helmet. They put a sock over his face and had a thing that looked like a price gun and scanned his head. It made a 3-D image of his head. The computer wont kick out the measurements until the insurance approves the helmet. Then, we will know how disfigured it is and how much he and for how long he will need to wear it.

We saw the surgeon again yesterday too. True has a slight bulge just right of the incision. It turned out to be fine but if it gets worse they will check it out again. She brought up the Fundoplication surgery...I wasn't even going to go there b/c I have been so frustrated with the whole thing. Anyway, we are trying one more medicine combination, going to the allergist next week and then seeing the surgeons again in two weeks. Hopefully, by then we will all be able to make a logical decision that everyone will be comfortable with.

Gaige has been pretty stable this week...hopefully he will do well for Fred. Fred is going to keep him busy while we are out of town...they are going camping (in our living room...our kids love to do this with dad)...going swimming (no, not in the bathtub...at a friends)...and not sure what else. The neurologist gave us some medicine to work with helping keep him calm during his admission to the hospital...yikes!

Bliss is doing well...she charmed everyone as the place where we were getting measured for the helmet by telling them that she wants to be a Pediatric Neurologist...they were telling everyone...it was so funny! She loves the attention, as you know!

Monday would be Andrew's 9th birthday...honestly, life has been so busy that I haven't had much time to process it. I am sure that we will do our usual cake and go to the Angel of Hope Tree we have for him. We will hand out some more basketballs as well. He never ceases to be part of our day...even in the busyness we talk of him all the time.

The "little-two" and I leave in the morning for Nashville. I am excited about seeing my Candian friend and also our former neighbor who we were so close to. Bliss only knows we are going to do a mother-daughter day...which she affectionately calls "Mudders-day". I did tell her there would be lots and lots of girls (at the dance competition) and she is going to love it. We are starting it with shopping of course, which she loves too!

Well I really should pack or something...behind, as usual...

thanks for reading...I wont update again til Sunday or Monday.

love to you all!
deb for the gang

Thursday, June 23, 2005 8:39 PM CDT

Lots of appointments equals lots of news!

The endocrine appointment went well...I loved the Dr. She was really looking at the whole picture, which is great. She had a number of possibilities and did about ten different tests on the blood samples she requested. She did a special xray to see his bone age and she presented his case to a group of doctors today to get more ideas.

She asked that we take his blood sugar more often. She also says he has started puberty...its called precocious puberty...I told her he was definitely precocious!

So the plan is to admit him in the next couple of weeks. I am supposed to call her in the morning to go over the plan they came up with today. When they admit him, they will put a line in and then take blood every thirty minutes to see his hormone levels and be able to tell how far alone in puberty he is. We will have to stop it with meds but they wont know how aggressively until the test. The next morning they will do a 5-hr glucose tolerance test. They may do another MRI or CT or something too. So that will be fun...will definitely be asking for mucho prayers. Gaige is the worst Gaige ever is in a drs office/setting. (I have a call into his neurologist to get ideas of calming him with medication but not so much he can't participate).

True went to the Craniofacial team today. They agree with the geneticist that it is Plagiocephaly and gave us a prescription for a molding helmet. We might have been able to wait on the helmet but since he is so delayed, he will not be getting off his head anytime soon so we need to start now. (He VERY rarely tries to roll over on his own and the muscles in his thighs and pelvis are their main concern right now).

We go next week to get fitted for the helmet...then fight with the insurance company and then get it ordered.

Bliss, True and I are going to Nashville next week for a night...(Dad and Gaige are having 'guy time")to see one of my Sisters (from the MitoSisterhood group I started years ago). My friend is from Canada so its rare for us to get to visit...I got to see her there right after Andrew died. Her daughter does Irish Dance and its the International competition...Bliss will LOVE it! Poor Bliss has had to take a back seat to her brothers these days so I am happy to get to do something special with her!

If you have read this far...thanks a bunch...if not, well thanks also but you may not read it...lol...don't forget to sign the guestbook!

love
deb for the gang

Monday, June 20, 2005 8:08 AM CDT

Leaving the post from Friday afternoon down below. We are still just so thrilled that the Lord didn't call us to bear another disease like this. I dont' say that with arrogance b/c we know that doing it once doesn't give any guarantees that God woulnd't call us to it again, but of course in the desire of our hearts, its not anything we would choose to do again.

We have a busy week of appts ahead (plus the Three the pediatrician told me Friday afternoon she was going to try and schedule.)
***********************
Monday--catch up!
Tuesday: 9:30 Feeding therapy for True
10:15 Physical Therapy For True
1p Gaige to Endocronologist (blood sugars)
Wednesday 9:40 Pediatrician for True
Thursday 10a Occupational Therapy for True
1:30p CranioFacial Team for True
(head malformation/plagiocephaly)
Friday: Who knows? I'm sure something will come up!
****************************

WWWOOOOOOOO----HOOOOOOOO!!!!! HALLELUYAH!!!!!

Can you hear the shouts? Gaige's re-test for SanFilippo disease was NEGATIVE!!!!

Thank you for all your prayers and good thoughts!

In other news...I have asked for True to have allergy testing before we start any foods and also want to rule out eosiniphilic disorders (way he processes certain foods) before we proceed with the surgery. So they are setting that up. He is so hoarse and just really fussy this week...presumably from the reflux. They are also sending us back to GI and Surgery to decide about the surgery after we see the Allergist.

Not much more to report...if you have missed checking, then you can see the history and catch up!

deb for the gang...

Friday, June 17, 2005 5:07 PM CDT

WWWOOOOOOOO----HOOOOOOOO!!!!! HALLELUYAH!!!!!

Can you hear the shouts? Gaige's re-test for SanFilippo disease was NEGATIVE!!!!

Thank you for all your prayers and good thoughts!

In other news...I have asked for True to have allergy testing before we start any foods and also want to rule out eosiniphilic disorders (way he processes certain foods) before we proceed with the surgery. So they are setting that up. He is so hoarse and just really fussy this week...presumably from the reflux.

Not much more to report...if you have missed checking, then you can see the history and catch up!

We'd love to hear from you...the kids love messages too!

deb and the gang!

Friday, June 17, 2005 5:02 PM CDT

WWWOOOOOOOO----HOOOOOOOO!!!!! HALLELUYAH!!!!!

Can you hear the shouts? Gaige's test for SanFilippo disease was NEGATIVE!!!!

Thank you for all your prayers and good thoughts!

In other news...I have asked for True to have allergy testing before we start any foods and also want to rule out eosiniphilic disorders (way he processes certain foods) before we proceed with the surgery. So they are setting that up. He is so hoarse and just really fussy this week...presumably from the reflux.

Not much more to report...if you have missed checking, then you can see the history and catch up!

We'd love to hear from you...the kids love messages too!

deb and the gang!

Thursday, June 16, 2005 8:36 AM CDT

Hello All!

It means so much that you guys visit us! We are always up for hearing from you too!

Well no news on the Gaige front...still waiting for those test results, but trying not to think about it too much. He started summer school today...usually we have bus meltdown but two of his old classmates (the twins...Corey and Torey) were on there and he was happy to see them! Thank you Jesus!

True is doing alright...has practically lost his voice...presumably from reflux causing esophogus damage (another reason for the pending surgery). He has therapy again this morning and works like a champ!

Bliss is busy as usual. She had her PT and OT evals this week for her legs and sensory issues. She didn't have enough deficits to qualify for therapy (except one OT training where they are going to teach me some sensory things to do with her). The neat thing is her visual accuity is sometimes a problem but what they said was...that she is actually gifted (have you ever seen her drawings/paintings/artwork) in that area and so some things (like Flies) process differently b/c that sense is so keen! Very interesting...they said she may be gifted in the general sense but was definitely gifted in the creative and visual sense. They also said that most gifted children have some mild sensory problems. She wanted to be an animator but recently decided she wants to be a Pediatric Neurologist (you should hear her say it...ha ha!) because she wants to make kids legs not hurt, like hers. We are going to try some sensory brushing on her feet before we go for the Botox to rule out it not being purely sensory for her toe walking.

We have had a light week with appointments and a busy one next week. I have been trying to catch up and do some medical research and get a little rest too.

Love
deb and the gang...

Monday, June 13, 2005 11:21 PM CDT

Home again...home again!

That's three hospital stays in 32 days...13 of them at lovely Chalet LeBonheur!

As you can tell, we didn't get the surgery scheduled yet. The doctors couldn't come to a consesus so we coulnd't procede while we were there. Instead we are verfiying our decision and then will see the pedi next week and tell her we are ready to proceed. So we will keep you posted.

True's milk scan showed 9 episodes of majoy reflux and innumerous milder ones during a one hour period. that's pretty scary...considering he didn't have any outward signs of this at the time.

Just super busy with evals and therapy this week. Thanks so much to those of you who have encouraged us during this last bit.

love
deb (who is falling asleep at the keyboard) and the gang!

Sunday, June 12, 2005 11:09 AM CDT

Good Morning everyone!

Well, True is snoozing and I actually got a fairly decent sleep last night.

Today is pretty much a wash...nothing happens around here on Sundays...most of the docs don't even make rounds. Anyway, we are waiting our time today for a milk scan/gastric emptying scan tomorrow. He is scheduled for 8a...the initial part takes a little over an hour and then we will have a 3 or 4 hour break and then go back for more studies. This will tell them how long it takes for things to move through...show some reflux and so on.

After this, our pedi group will talk with surgery and with our GI and everyone will come to a consensus regarding the surgery. At this point, unless there were great reason not to, Fred and I are pretty set on doing the surgery. They will likely do it tuesday or wednesday (hoping for tuesday). We are basically just ready to move on with this and progress.

Summer school starts for Gaige tomorrow (he has been going to summer camp this past two weeks) but it is only a half day. Tommorow, Fred is going to try and get the bus to take Gaige to camp tomorrow after he's out. Bliss will be shifted around...spending time here at the hospital, with Nana and any friends. If you live near us and would be willing to let Fred drop bliss off about 8am, let us know. If you could just keep her a couple hours until my mom could pick her up, that would be helpful.


Gaige has been stable with his blood sugars the past couple of days...it seems to come in waves. We are still trying to figure him out in that respect. Change is very hard for him, so please say a prayer as not only are we separated but he is starting a new school location tomorrow and that will be a change too.

Bliss is well. She had a neuro appt this week and we are going to try Botox to help the pain in her legs. She has decided that she wants to be a Pediatric Neurologist so that she 'can help kids legs not hurt". How sweet is that?

Please pray that Fred's boss not get frustrated with this upheaval and him having to flex his schedule. When Fred interviewed with him, he told him that True had a surgery coming up and that we had special needs children and he said he could be flexible...what a blessing!

Thank you so much for your calls and visits...keep it coming and don't forget to sign the guestbook...I check it with the kids several times a day!

love
deb

Saturday, June 11, 2005 8:20 AM CDT

Hey there

this will be brief...I have written this four times and I can't write it all out again right now...

we are in the hospital...with True...being worked up for reflux, c-diff, apnea and the other surgery.

will write more tonight...come visit is you can...

room 5408 west
901.572.5408

thanks
deb

Tuesday, June 7, 2005 9:13 AM CDT

Good morning...

let me rephrase that...morning??? already??? I am working on six hours of sleep since Sunday...I guess I will catch up eventually!

The reason for it last night was an ER trip with True. He has been running a low-grade fever for days now. I had been in touch with the Dr for the past few days too...they told me to watch out for a rash and/or his stomach getting hard b./c of the surgery. Well the rash came yesterday afternoon and his tummy got hard last night. Six hours, xrays and labs later...he has both a virus and his tummy was having some problems...a big gas bubble and stools just sitting there (they saw it on the xrays). The stools and gas have resolved but we still have a fever.

For those of you who checked the page over the weekend, you can skip this part. Gaige was the geneticist Friday to get the test results from his hospital stay. Unfortunately, something quite concerning came back positive (shouldn't that be negative???) and they are retesting to confirm. The disease is a metabolic lysosomal storage disease...called SanFilippo. The disease course is not great and similar to what Andrew went through, so needless to say we are praying that the tests are negative this time (and next b/c they will do it three times if we get a negative).

Of course the thought of this with Gaige is harrowing, puzzling and overwhelming at times, but we again are called to Trust God...but like I always tell the Lord...I can trust you, but I don't always have to like the reason. Many of you know I grapple with the healing thing...I know God does heal, but sometimes I feel that people frequently only respond with healing vs caring, as a clever form of denial. I know many would disagree with this, but I guess for me, I just want my kids to be accepted for whoever they are and whatever they have. Feeling called to adopt special needs kids, we of course, must deal with these issues often. I have to remind myself what God called us to and that the children's hospital is our mission field. I know many struggle with the 'why me and why my kid' and I have to agree with Mattie Stepanek here...why not us? How could we ask that it be someone else? Living my life with these strong and sweet little warriors has taught me so much.

Andrew taught us to love beyond what we can see and Gaige helps us put it into practice with great patience. Everytime I come across someone wierd or unlovely, I am reminded to love them anyway.

Gaige's world is so very different that he has taught us to look at life in a quirky and humorous and challenging way as we always try to put ourselves in his shoes. (Actually as a said here...his OT said for him its the differnce for us like driving to work everyday...something you do without thinking, and for him its like driving to work on Ice!)

Bliss has taught me great determination...she is such a miracle but she was both called and determined to be one. You can have a calling without walking in it or being determined to see it through. She's a charming miracle too.

True is already teaching me a lot. He has taught me to so very thankful for the Gift the Lord gave us in him. He has also taught me no matter what you are going through that a smile goes a VERY long way. The nurses would come in his room just to see him smile!

love
deb



here's our schedule this week:
We have a super busy week...

Monday 9a Meet with Adoption Worker at home
10a Meet with Nurse Case Manager at home
11a Occupational Therapy Evals for Bliss and True
Tuesday 9a Feeding Therapy at home
10:30 Neurology visits for Bliss and True
Wednesday 10a Orthopedics for True with shots
Thursday Moms time out
Friday 9a Feeding therapy
1:40 Meet with Surgeon for post-op and to schedule
next surgery.

Monday, June 6, 2005 1:14 AM CDT

Hi...

I'm cutting and pasting yesterday's update below b/c I know a lot of people don't read on the weekends. We are still trying to study up on this new possible diagnosis for Gaige(please read about it below). Unfortunately there's not a whole lot of great information out there.

We have a super busy week...

Monday 9a Meet with Adoption Worker at home
10a Meet with Nurse Case Manager at home
11a Occupational Therapy Evals for Bliss and True
Tuesday 9a Feeding Therapy at home
10:30 Neurology visits for Bliss and True
Wednesday 9a Pediatrician for True with shots
Thursday Moms time out
Friday 1:40 Meet with Surgeon for post-op and to schedule
next surgery.

This weekend we got a sandbox, hanging rings and swings for the kids and adapted them in our screened-in porch. Since we dont' have shade in our backyard this was a good place to give them a place to play without getting too much sun. They are super excited about it!

Please read the info about Gaige and continue to pray!
*******************
Gaige is the big newsmaker this week...we have finally gotten in touch with the education nurse in the diabetes clinic here and she is trying to help me figure all this out. She thinks he is either in the 'honeymoon phase' or diabetes or he has rebound hypoglycemia. This would be where his sugar dips really low in the night...then his body would dump glucose to compensate...but it dumps too much which is why we have a high after fasting all night...then it dumps insulin to compensate and over and over again. So we are trying to figure it out. She has me waking up at 3am to take it now (I dont' get to bed until 12:30 b/c True still has to be fed small feedings) because that's about when we are at our lowest...so far it hasn't really shown us anything.

We also had Gaige's geneticist appointment yesterday. Unfortunately, something did show up on the Organic acids. They are running this test again just to make sure it wasn't a fluke and then they are going to run a more precise and specific test too. The disease is a lysosomal storage disease called (I can't say it yet but I think I can spell it) Mucopolysaccaridosis. There are many types and she believes he has Sanfilippo kind but there are four kinds to this one too. She said he doesn't have all the clinical picture of it, so she's not sure (he never has all of anything...we always say he has Gaige Wells syndrome!)

We are trying not to worry UNTIL something is confirmed...once again I am called to remember what we said when Andrew was being diagnosed..."no matter what, we trust you God!" So we wait and trust...

True is doing well and Bliss is too...Fred's job is going alrighty...I am super busy with all of this...

deb

Saturday, June 4, 2005 8:48 AM CDT

Hi Again...

Gaige is the big newsmaker this week...we have finally gotten in touch with the education nurse in the diabetes clinic here and she is trying to help me figure all this out. She thinks he is either in the 'honeymoon phase' or diabetes or he has rebound hypoglycemia. This would be where his sugar dips really low in the night...then his body would dump glucose to compensate...but it dumps too much which is why we have a high after fasting all night...then it dumps insulin to compensate and over and over again. So we are trying to figure it out. She has me waking up at 3am to take it now (I dont' get to bed until 12:30 b/c True still has to be fed small feedings) because that's about when we are at our lowest...so far it hasn't really shown us anything.

We also had Gaige's geneticist appointment yesterday. Unfortunately, something did show up on the Organic acids. They are running this test again just to make sure it wasn't a fluke and then they are going to run a more precise and specific test too. The disease is a lysosomal storage disease called (I can't say it yet but I think I can spell it) Mucopolysaccaridosis. There are many types and she believes he has Sanfilippo kind but there are four kinds to this one too. She said he doesn't have all the clinical picture of it, so she's not sure (he never has all of anything...we always say he has Gaige Wells syndrome!)

We are trying not to worry UNTIL something is confirmed...once again I am called to remember what we said when Andrew was being diagnosed..."no matter what, we trust you God!" So we wait and trust...

True is doing well and Bliss is too...Fred's job is going alrighty...I am super busy with all of this...

we love you!
deb

Wednesday, June 1, 2005 10:38 PM CDT

Hi All!

Hope you are enjoying this nice weather (except for the rain that came later today)...the sky was so blue and the clouds so white...it was like a picture!

The biggest news is Fred got a job! He is going to be working with a framer who has agreed to be flexible during True's upcoming surgery and understands Fred may not be able to do the work b/c of his ankle. He started today...and he was whooped! This will at least work for now and we are thankful! We are most thrilled that he has a steady schedule going to work and getting off the same time each day, which works way better for our family.

True continues to recuperate. The c-diff seems to be clearing up some but he is still a little more tired than usual. Today he ran a fever. We are just watching it and I am hoping he didn't aspirate. He has had a bunch of choking spells since the surgery and never had them before. He is also vomitting in his sleep, which is new. Not as much vomiting during the day though, so I guess that's an improvement...maybe???

Gaige has been the big concern this week. The Neurology appt went well and he agreed to manage his meds since there is a shorttage of child psych's in town. His blood sugars have been super crazy from down in the 60s to over 200. (Normal is 80-110) I have no idea what is going on. We go to the Geneticist on Friday and if her tests don't show anything I am just going to have to insist we see an endocronologist in the next couple of weeks, or we are going to have to find one we can self-pay to see. I feel completely clueless about it all...arrgghhh!!!! On a positive note, Gaige told me he didn't feel well...that he wanted to throw up (which is what he did the night before he ended up in the hospital) and when I checked it, it was low, so I really praised him for paying attention to his body. We are ALL learning here!

So anyway, I am half hoping for answers from the metabolic testing and half hoping its only hypoglycemia (diabetes would be much harder on Gaige's diet).

Thanks for all the prayers and for reading. Sorry I didn't update sooner but Caring Bridge was doing some maintenance that prevented updates.

deb

Saturday, May 28, 2005 10:30 PM CDT

Hi All who read my ramblings!

Many have emailed wondering how True was FEELING...guess I have forgotten to add that...surgery-wise I think he's doing pretty great! He doesn't quite have his old energy back and is taking a lot of little catnaps, although I am trying to direct him back to his old schedule. He doesn't want to stand on our legs just yet, but he couldn't do it for that long anyway (he only puts weight on one leg so I guess its even harder if you are lacking energy). He always has plenty of time to smile!!! He is starting to laugh now and almost always laughs at Fred when he looks at him, even if Fred isn't trying to make him laugh. (We all laugh at Fred too...on the inside!) True seems happy to be around Gaige and Bliss and is always cutting his eyes and smiling at them.

True is taking the neocate just fine...I got a new blender yesterday because I am becomign a pharmacist concocting this stuff...and it looks better than the hospital's did! The c-diff may be getting better...less evidence it is still there...although I don't know how we know for sure without a stool sample...joy! Hopefully the antibiotics are doing their job.

I am trying to gather info about the Fundoplication surgery...Fred is for it, especially if it will cure the reflux and help him grow. I don't know why I think never being able to vomit again is such a big deal...its not like vomitting is an activity anyone enjoys...but sometimes it makes you feel better later! Since its irreversible, I just want to make the RIGHT decision.

Tomorrow I am going to start back studying Gaige's blood sugars...he has been eating like crazy the past few days...maybe a growth spurt, like he needs to get any taller! Or could be sugar...I am still a novice at this!

We have a busy week of appts...Gaige sees Neurologist on Tuesday and Genetics on Friday (will get all the results from the metabolic tests they did in the ER) and True has his four month checkup on Wednesday...poor guy...more shots. So I know where I will be hanging out next week...but then that isn't so unusual.

Hope you all have a great memorial day weekend...I am thinking a lot of my brother Ben. He is serving in Iraq and is such an inspiration to me! He actually got to call me the day after Gaige got out of the hospital...he wanted to check on him...it was so nice to hear his voice! Of course, I am also thinking of Andrew and lots of others too...people who left their mark and are forever remembered on days like these.

I still want to be like Andrew when I grow and "Love beyond what I can see". What a life of love!

deb

ps...dont' forget to sign the guestbook...its nice to know you are reading...

Thursday, May 26, 2005 11:37 PM CDT

We are home!!!!

We got to come home around 2p today...yipee!!!

They sent us home on antibiotics and hopefully it will take care of the c-diff infection. C-diff can be really hard to get rid of so we are praying for a quick reaction to the meds. I don't know if the infection lingered if True would be able to have the second surgery or not. We are still thinking through this life-altering decision. Pray for wisdom.

True started on Neocate, which is an amino-acid based formula with NO milk proteins at all. Hopefully it will help some of his feeding, skin and reflux issues so we wont have to have the other surgery. Weight gain is what we need too! The Neocate will be delivered to us via a med supply company...it costs about $45 a can...yikes! Insurance covers it...whew!

The EEG is normal but the neuro wants to see us in his office in two weeks anyway. EEG's are not always accurate because the patient has to have seizure activity during that 20 minute test for them to have an idea on what is going on. So I am not sure if we will try again or keep watching it all.

We released butterflies today in Memory of Andrew...it was really cool...we only had five (someone was so sweet to donate them to us) so it went fast...but it was wonderful. There are pictures in the new slide show up there. We got hambugers from Andrew's favorite place, Huey's, too. I got to go out after the kids went down and hand out about nine basketballs. There is a picture of this too...the kids there live nearby...the lady taught in Gaige's class as an aide. She is a single foster mom and has adopted three of those boys! Every time I visit, they are so quiet and good and are playing a game or reading...she's doing a great job.

People have asked all day how I am doing with it being 'THE DAY'...but after being up since 4am (gotta love hospitals) and getting True discharged and so on, I haven't really had much time to process. We kinda get a double whammy b/c Andrew died on Memorial day which fell on the 26th that year...so Monday is kinda hard too...maybe i can process better by then. Thank you for all your support and love! Thank you for being understanding that Andrew will forever and always be a part of our everyday life.

love
deb

Wednesday, May 25, 2005 9:51 AM CDT

CAPS are what has changed today (WEDNESDAY) since I know many of you didn't get to read yesterday's (tuesdays) update that I posted late last night...

Well, we are still here!!!! (WE ARE GOING TO BE HERE A WHILE LONGER)

True got woken up at 5am by the nurse and then the stream of surgeons started.

He has had six episodes of diarhea today so we are watching for dehydration. They did a chest xray and CBC to check for infection but they were clear. We are still waiting for the stool culture to get back...should be tomorrow. They also called our GI for a consult tomorrow to talk about these stools and other formula's to try.

(STOOL CULTURE CAME BACK AND IT WAS POSITIVE FOR C-DIFF, WHICH IS SOMETHING WE ALL HAVE IN OUR COLON BUT IT CAN BECOME ACTIVE AFTER GETTING IV ANTIBIOTICS...SO NOW HE IS GETTING ORAL ANTIBIOTICS--THANKFULLY, THEY DO NOT NEED TO START ANOTHER IV!!! BUT WE HAVE TO STAY A COUPLE MORE DAYS)

He had a wierd period of alteration (for lack of a better word) today...we are thinking it could be seizure. True was supposed to have an EEG last Friday but he was busy with the surgeon...so they have added a neurology consult. His regular nurses/PCAs knew it wasn't him because he wasn't smiling! What a charmer! (NEUROLOGIST HAS BEEN IN AND ORDERED AN EEG TO TEST FOR SEIZURES)

He has everyone wrapped around his finger with those smiles...including Mom! (WELL, THAT'S NOT GOING TO CHANGE!!!)

If the diarhea has lessened...the low-grade fever gone and the consulting docs agree, we should be able to go home late tomorrow.

I really want to be home for Andrew's anniversary although I have no idea what we can plan for it. Any bereaved parent will tell you that those big days go much smoother if you have a plan. So, I hope in my tiredness, that a good idea comes to me since we are limited with True's recuperation. I really miss him,.,.another nurse came in today and vividly remembered taking care of Andrew when he got his gtube. (DOESN'T LOOK LIKE THIS IS GOING TO HAPPEN, SO WE ARE TRYING TO MAKE ALTERNATE PLANS...i AM GOING TO TALK TO THE SOCIAL WORKER OR CHAPLAIN TODAY TO SEE IF THEY CAN HELP US THINK OF SOMETHING.)


We would still love visits at LeB on Wednesday morning/early afternoon or at our home after we are discharged. Thanks for all the love and prayers! (STILL WOULD LOVE YOUR VISITS, ESPECIALLY TOMORROW!)

love
deb

Wednesday, May 25, 2005 9:51 AM CDT

CAPS are what has changed today (WEDNESDAY) since I know many of you didn't get to read yesterday's (tuesdays) update that I posted late last night...

Well, we are still here!!!! (WE ARE GOING TO BE HERE A WHILE LONGER)

True got woken up at 5am by the nurse and then the stream of surgeons started.

He has had six episodes of diarhea today so we are watching for dehydration. They did a chest xray and CBC to check for infection but they were clear. We are still waiting for the stool culture to get back...should be tomorrow. They also called our GI for a consult tomorrow to talk about these stools and other formula's to try.

(STOOL CULTURE CAME BACK AND IT WAS POSITIVE FOR C-DIFF, WHICH IS SOMETHING WE ALL HAVE IN OUR COLON BUT IT CAN BECOME ACTIVE AFTER GETTING IV ANTIBIOTICS...SO NOW HE IS GETTING ORAL ANTIBIOTICS--THANKFULLY, THEY DO NOT NEED TO START ANOTHER IV!!! BUT WE HAVE TO STAY A COUPLE MORE DAYS)

He had a wierd period of alteration (for lack of a better word) today...we are thinking it could be seizure. True was supposed to have an EEG last Friday but he was busy with the surgeon...so they have added a neurology consult. His regular nurses/PCAs knew it wasn't him because he wasn't smiling! What a charmer! (NEUROLOGIST HAS BEEN IN AND ORDERED AN EEG TO TEST FOR SEIZURES)

He has everyone wrapped around his finger with those smiles...including Mom! (WELL, THAT'S NOT GOING TO CHANGE!!!)

If the diarhea has lessened...the low-grade fever gone and the consulting docs agree, we should be able to go home late tomorrow.

I really want to be home for Andrew's anniversary although I have no idea what we can plan for it. Any bereaved parent will tell you that those big days go much smoother if you have a plan. So, I hope in my tiredness, that a good idea comes to me since we are limited with True's recuperation. I really miss him,.,.another nurse came in today and vividly remembered taking care of Andrew when he got his gtube. (DOESN'T LOOK LIKE THIS IS GOING TO HAPPEN, SO WE ARE TRYING TO MAKE ALTERNATE PLANS...i AM GOING TO TALK TO THE SOCIAL WORKER OR CHAPLAIN TODAY TO SEE IF THEY CAN HELP US THINK OF SOMETHING.)


We would still love visits at LeB on Wednesday morning/early afternoon or at our home after we are discharged. Thanks for all the love and prayers! (STILL WOULD LOVE YOUR VISITS, ESPECIALLY TOMORROW!)

love
deb

Wednesday, May 25, 2005 9:51 AM CDT

CAPS are what has changed today (WEDNESDAY) since I know many of you didn't get to read yesterday's (tuesdays) update that I posted late last night...

Well, we are still here!!!! (WE ARE GOING TO BE HERE A WHILE LONGER)

True got woken up at 5am by the nurse and then the stream of surgeons started.

He has had six episodes of diarhea today so we are watching for dehydration. They did a chest xray and CBC to check for infection but they were clear. We are still waiting for the stool culture to get back...should be tomorrow. They also called our GI for a consult tomorrow to talk about these stools and other formula's to try.

(STOOL CULTURE CAME BACK AND IT WAS POSITIVE FOR C-DIFF, WHICH IS SOMETHING WE ALL HAVE IN OUR COLON BUT IT CAN BECOME ACTIVE AFTER GETTING IV ANTIBIOTICS...SO NOW HE IS GETTING ORAL ANTIBIOTICS--THANKFULLY, THEY DO NOT NEED TO START ANOTHER IV!!! BUT WE HAVE TO STAY A COUPLE MORE DAYS)

He had a wierd period of alteration (for lack of a better word) today...we are thinking it could be seizure. True was supposed to have an EEG last Friday but he was busy with the surgeon...so they have added a neurology consult. His regular nurses/PCAs knew it wasn't him because he wasn't smiling! What a charmer! (NEUROLOGIST HAS BEEN IN AND ORDERED AN EEG TO TEST FOR SEIZURES)

He has everyone wrapped around his finger with those smiles...including Mom! (WELL, THAT'S NOT GOING TO CHANGE!!!)

If the diarhea has lessened...the low-grade fever gone and the consulting docs agree, we should be able to go home late tomorrow.

I really want to be home for Andrew's anniversary although I have no idea what we can plan for it. Any bereaved parent will tell you that those big days go much smoother if you have a plan. So, I hope in my tiredness, that a good idea comes to me since we are limited with True's recuperation. I really miss him,.,.another nurse came in today and vividly remembered taking care of Andrew when he got his gtube. (DOESN'T LOOK LIKE THIS IS GOING TO HAPPEN, SO WE ARE TRYING TO MAKE ALTERNATE PLANS...i AM GOING TO TALK TO THE SOCIAL WORKER OR CHAPLAIN TODAY TO SEE IF THEY CAN HELP US THINK OF SOMETHING.)


We would still love visits at LeB on Wednesday morning/early afternoon or at our home after we are discharged. Thanks for all the love and prayers! (STILL WOULD LOVE YOUR VISITS, ESPECIALLY TOMORROW!)

love
deb

Tuesday, May 24, 2005 9:21 PM CDT

Well, we are still here!!!!

True got woken up at 5am by the nurse and then the stream of surgeons started.

He has had six episodes of diarhea today so we are watching for dehydration. They did a chest xray and CBC to check for infection but they were clear. We are still waiting for the stool culture to get back...should be tomorrow. They also called our GI for a consult tomorrow to talk about these stools and other formula's to try.

He had a wierd period of alteration (for lack of a better word) today...we are thinking it could be seizure. True was supposed to have an EEG last Friday but he was busy with the surgeon...so they have added a neurology consult. His regular nurses/PCAs knew it wasn't him because he wasn't smiling! What a charmer!

He has everyone wrapped around his finger with those smiles...including Mom!

If the diarhea has lessened...the low-grade fever gone and the consulting docs agree, we should be able to go home late tomorrow.

I really want to be home for Andrew's anniversary although I have no idea what we can plan for it. Any bereaved parent will tell you that those big days go much smoother if you have a plan. So, I hope in my tiredness, that a good idea comes to me since we are limited with True's recuperation. I really miss him,.,.another nurse came in today and vividly remembered taking care of Andrew when he got his gtube.


We would still love visits at LeB on Wednesday morning/early afternoon or at our home after we are discharged. Thanks for all the love and prayers!

love
deb

Monday, May 23, 2005 10:15 PM CDT

Monday Monday...(singing the song in my head)

True is my smiling baby again! Yipee!!! The nurses come just to see him smile and the surgeons even comment on not ever seeing such a peaceful baby...what a blessing!

We have increased his feeds and he is tolerating them well. He is having some pain with gas and had a good bit of diarhea this morning. They sent some cultures off because of this to test for c-diff. He was also running a mild fever but as of right now we have gotten rid of it. It has been going back and forth so hopefully it will stay away.

Although he hasn't had anymore diarrhea, he hasn't had any more stools, which could be good or bad, depending on how the next one comes.

I cant get out of them when we can go home...but seems like if the stools are normal and the fevers are gone, then we might could go home tomorrow.

Surely wednesday at the latest...

I have made a couple of sweet friends in one of the night nurses and one of the PCA's...its nice to know there are people who arent JUST doing their jobs.

Gaige and Bliss got to spend the night with friends (seperately) last night and had a good time. I think Gaige is still having a hard time with the ending of school (he always has a hard time with this) and all that is going on with upheaval. Even after True gets home I am not sure how I am going to be able to keep up with Gaige and keep True calm and Fred be at work, so pray specifically for this, if you want to.

Thanks so much for reading this and all your support.

love
deb

Sunday, May 22, 2005 10:02 PM CDT

Good evening!

So so sorry it has taken me so long to update. I wanted to, but computer issues with the hospital phone system prevented me and I finally found a back door in.

Anyway, True is improving. He scared me pretty good yesterday afternoon because he stopped breathing for a little bit...he started on his own and it was just a short time but it was enough to where I just left the room for the first time since then (and that's with leaving someone here). We believe it was the morphine so he is trying to make do with just tylenol, poor thing. He shared plenty of smiles today but was super tired. He did not get good sleep last night and I am trying to stop them from wakign him tonight, but they still have to follow their orders.

The great thing is that he actually made a diaper last night. They started him on one ounce of formula every three hours today...he has taken it well. He had one jag of reflux but he has not made a diaper out of this so I dont' know if they will increase it tomorrow or not. Maybe we can get home by Tuesday or Wednesday.

Some folks have asked me how the surgery is done. They way they explained it to me is...they took out his appendics to make more room...then they actually rolled out the intestines...moved the colon to the opposite side of where God put it...then put the intestines back in. They said its like getting something new out of a box...you can never get it back in there quite the way it came out. They said to make sure that we tell the radiologist if he has any more tests or xrays of his tummy or they will freak out b/c everything is in the wrong place! Kinda funny!

I might ahve mentioned that True will be evaluated for another surgery in a couple of weeks. The Upper GI results show that he would likely benefit from a surgery called a Nissen Fundoplication. I don't fully understand it yet but it somehow involved wrapping the esophogus around the stomach or vice-versa. True is continually sliding down on the growth chart...now in the 3 percentile for weight, so the reflux is preventing him from gaining enough weight. Even though the rotation surgery he has this week, will not cure reflux, it can sometimes make it more manageable. Hopefully it will get better and he wont have to have another surgery.

He is just the sweetest angel of a baby ever...hardly ever cries...he is so kind or as Mrs Denise says "You're such a nice boy". Even the surgeons (who dont stop to be personable at all) have said something about how peaceful and sweet he is.

Its so encouraging to get your emails, messages on the guestbook here, phone calls and visits. Today we had visits from Nana, of course...Ms Rita and Cheyenne...Ms Cassondra and Angelica...it was a nice way to break up the day.

all our love
deb and the gang....

the pictures above are from this week...right after he got back from surgery and then yesterday when he was trying really hard to suck his thumb,...and then today when he as in a good mood and smiley!

Friday, May 20, 2005 9:32 PM CDT

Hello everyone

Sorry this is getting on here so late in the day. We have been swamped but I have online access now, so that will help a lot.

True went into surgery about 7:45 and got out around 9:30 and back to the room around 11a. The surgeon said everything went well. Now that I have some time to explain a malrotation to you, I will do it.

Around the tenth week of fetal development, the short bowel of the intestines is supposed to turn one way but True's turned the other way. Usually babies develop a volvulus(wierd word, I know) which is like a bowel obstruction at the rotation site. This makes the baby vomitt bile and leads them to the ER where they are immediately taken into surgery to have the procedure True had today. However, once these babies get to the vommitting stage, the part of the intestines/colon and so forth, beyond the obstruction starts to die. These babies can lose up to 30% of their intestines and need transplants and have problems for the rest of thier lives.

We were handed a miracle b/c True was having an upper GI to see the severity of his reflux and "HAPPENED" to find it...we take this as a miracle! (Andrew had a similar miracle also discovered accidentally on an UGI...an artery wrapped around his trachea and esophogus). We were given an opportunity to spare True with this! What a miracle God gave us this week!

The dr said there was no necrosis and everything was still alive. Now we wait around 3-5 days for True to move his bowels...once we have a diaper, he can start eating again....then he will be on his way home! True has had a few little things today...he has been running a fever off and on...it is controlled right now. He is also showing some signs that some secretions are in his lungs...we are watching this very closely. His respiratory rate is getting down to 18-20 now and any lower and we will need to evaluate. They had only rxed tylenol, if you can believe that for ABDOMINAL surgery...but he had too much pain so he is now on Morphine. This is likely the reason for the resp rate, but we want to keep an eye on it just in case. His heart rate has been too high at times too.

My sweet True so seldom cries, I hardly know what to do for him. He is so sweet, everyone is in love with him. This is the same floor that Andrew was on with his gtube...many of the nurses remember us and are especially interested in True. Most of our nurses didn't know that Andrew lives with Jesus now because we were at home on hospice when he died, so its bittersweet. The sweet is feeling Andrew's presence in a way I don't usually feel it. I know it sounds corny, but I know he is watching over True.

Please continue to pray for Gaige...he had a huge meltdown at my moms tonight and threw just about anythign he got his hands on....it lasted about an hour until Fred could get there. We just can't leave him with anyone but mom, so its hard on us all. We are still muddling through learning about his hypoglycemia. This time of year is so hard on him because he doens't do well with change and his last day of school was today.

I will close for now. You guys have been great emailing and calling,...a friend from Toronto even called today. We love visits too and will likely be here until tuesday or wednesday at the earliest.

love
deb

Thursday, May 19, 2005 5:58 PM CDT

UPDATE: Surgery is scheduled for 7:30 tomorrow morning 5/20. We are in room 7418 and the number is 572-7418.


We are on our way out the door for surgery for True for a dangerous birth defect they just *happened* to find on an Upper GI they were doing for his reflux. (Its called a malrotation of the midgut/small bowel) It usually isn't caught this early so we are praying that his intestines are intact (they start dying with this condition). I don't know if surgery will be today or tomorrow. When we first heard about this, we didn't realize it was so serious. The www.caringbridge.org/tn/wells/ will be updated at the least, daily. Its a hard recuperation with many possible complications. Please pray he has been spared this with the early diagnosis.

The hospital number is 901.572.3000 to call for information. We should be there by noon CST. If anyone has a laptop with internet access we could borrow for the next week, please call us there or Fred at 497.1966.

Feel free to visit...I get bored and lonely up there! We love you and thanks for taking this journey with us.

ps...I know some of you have basketballs you were going to deliver...we have a box on our porch for them or you can hang on to them until we are back home (probably a week or so). Thanks a bunch!

Thursday, May 19, 2005 11:38 AM CDT

We are on our way out the door for surgery for True for a dangerous birth defect they just *happened* to find on an Upper GI they were doing for his reflux. (Its called a malrotation of the midgut/small bowel) It usually isn't caught this early so we are praying that his intestines are intact (they start dying with this condition). I don't know if surgery will be today or tomorrow. When we first heard about this, we didn't realize it was so serious. The www.caringbridge.org/tn/wells/ will be updated at the least, daily. Its a hard recuperation with many possible complications. Please pray he has been spared this with the early diagnosis.

The hospital number is 901.572.3000 to call for information. We should be there by noon CST. If anyone has a laptop with internet access we could borrow for the next week, please call us there or Fred at 497.1966.

Feel free to visit...I get bored and lonely up there! We love you and thanks for taking this journey with us.

ps...I know some of you have basketballs you were going to deliver...we have a box on our porch for them or you can hang on to them until we are back home (probably a week or so). Thanks a bunch!

Tuesday, May 17, 2005 10:48 PM CDT

Whew!!! What a five days it has been!

We are still trying to see if there is a pattern to Gaige's blood sugars. He had another very low (36) on Sunday and he was bouncing around...as opposed to unresponsive on Thursday with a 45. At times, he has highs which seem like rebound sugars. I have a good friend with a child with severe hypoglycemia so she is coaching me...I call her ten times a day! Anyway, we are plugging along but its a 24/7 thing to think about! The school is freaking out but his last day is Friday and its three weeks until extended school year starts for him, so hopefully we will have a better idea of how often its happening and set a plan in place.

True had an Upper GI (UGI) and a Hip Ultrasound (HUS) Monday morning. As soon as all the barium (milk with dye in it) got down, it came back up and they got a perfect picture of his reflux. Its at a moderate level and thats with us doing everything we can try except for amino acid based formula. The HUS was negative...they thought he might not be bearing weight on his left leg b/c of hip dysplasia but its all neurological, going back to the neuromotor disorder/cerebral palsy.

True had his first feeding therapy today and it wore him out. She showed me some oral excercises to do with him...he is not able to do much at a time but we will press on. He has PT again tomorrow and I will learn how to do the stretching.

Unfortunately, the UGI showed something unexpected. True has a 'malrotation of the midgut". The good news is that they usually don't find this deformity until its critical and a life or death thing. The pediatrician called to consult our kids GI doc (True wont see him the first time until July) and they said surgery needs to be done before it gets to that critical point. They will call back tomorrow with a time to meet with the surgeon. She said the surgery will probably be done in the next couple of weeks unless symptoms start and then we are head straight to the ER and have it done that day!

We are very thankful that the Lord allowed this to be caught before it got to a dangerous point and are in faith that it will not obstruct before True can have the surgery. I, for one, feel overwhelmed with all the new things to think about with Gaige and now with True. Please pray for us as we plan for this...Gaige will be out of school and its hard to find someone to leave him with...and all the other stuff too.

One more thing...Fred's boss has not been able to give him more than 10 hours since last Monday. He went to a job fair today but needs a job immediately...if you know of anything please let us know...or pray!

thanks for all your support and checking in on us!

love
the wells clan

Saturday, May 14, 2005 10:39 PM CDT

Hi everyone!!!!

Thanks so much for your prayers, phonecalls, visits and guestbook messages. We really haven't felt more loved during any of our kids admissions and that's really encouraging to us!

I have to say that normally when we have been admitted through the ER and assigned to a team of residents, that I feel we get stellar care but that was not the case this time. My favorite resident experience was when Gaige and True were laying in the bed together...the resident came in and started listening to True's heart!!!! No kidding!!! Anyway, this being Gaige's first admission so I didn't know how he was going to do but that really didn't matter a whole lot. He did start eating and drinking today after we got home.

When we got to the ER and figured out (on the ambulance) that it was blood sugar, I was shocked. I called his geneticist b/c she is always trying to figure him out...its not unusual for her to call me out of the blue and have a new idea or test to try. I knew sugar problems could be a big clue. She had me grab a nurse and then ordered a slew of metabolic tests. These wont be back for weeks but we already had an appt with her on June 3rd, so hopefully it will be back by then.

No one ever knew who was in charge...the residents kept saying it was the geneticist and when we had been there over 24 hours and not seen her, I beeped her. She had never been told Gaige was admitted. She was on her way out of town. I told the residents this and one of them called her...she ordered a couple more tests. Then this morning they came in and told me they were still waiting for her to come and visit and call the shots, which of course she was not going to do. It was very frustrating.

The tests she ordered are checking for metabolic diseases in the Mitochondrial/Fatty Oxidation Disorder (FOD) families...this of course, makes us nervous but they wouldn't be terminal or progressive illnesses, just ones you have to manage well with diet and such.

Overnight, Gaige maintained his blood sugars without the D5 (IV sugar water)...he even had one spike in the middle of the night, which is confusing if you ask me.

Because he maintained his levels, they had us come home with a Accucheck machine and we will start monitoring it in the mornings or when we see symptoms that could be low sugars. Now that we look back, we realize he has been very sluggish in the mornings for months (he used to hit the ground running) and we were so happy he wasn't on GO that we didn't realize something could be wrong.

It was a very surreal experience for me...being the month of May and with the anniversary of Andrew's death so close, it was all too easily a reminder of the past. Sometimes its nice to remember things b/c I worry I have forgotten too much, but other times its just painful.

The update on True is that the MRI was normal...this is good. Although both the pedi and the Neuro say that this is not conclusive at this age, the scoliosis is likely from muscle tone. The working diagnosis is Neuromotor disorder which is a beginning term for Cerebral Palsy. CP is a very wide diagnosis with a wide variety of prognosis. Prayerfully, with enough Early Intervention, we will have another miracle on our hands. He had his first PT session this week and tolerated it better than we expected. He has his first speech/feeding therapy session on Tuesday. Monday he has an upper GI and an ultrasound of his hip.

Bliss had a drs visit this week too. She ordered a Physical and Occupational Therapy evaluation for Bliss. She also started her on allergy meds and some tummy medicine to get things moving, if you know what I mean. We were able to get the same agency that is working with True to take her on, but we haven't gotten insurance clearance yet.

As far as the Memphis Life of Love Project...its just not happening like we hoped. We only have a handfull of balls. Some people have donated money, so I have enough to purchase about 30 basketballs. We have called the basketball bash off and will either just drive through the neighborhood and hand them out or give them the kids involved with Eikon Ministry. We had already decided this before Gaige was in the hospital but I think its the right time. We still covet your support and prayers during that time...and would love to hear from you on May 26th. Thanks to you guys who have volunteered to help that day or donated to the project. I have learned as we have done this and we will go back to the old way next year. Thanks so much!

Everyone happily sleeping in their beds...

Saturday, May 14, 2005 9:43 PM CDT

Hi everyone!!!!

Thanks so much for your prayers, phonecalls, visits and guestbook messages. We really haven't felt more loved during any of our kids admissions and that's really encouraging to us!

I have to say that normally when we have been admitted through the ER and assigned to a team of residents, that I feel we get stellar care but that was not the case this time. This was Gaige's first admission so I didn't know how he was going to do but that really didn't matter a whole lot.

When we got to the ER and figured out (on the ambulance) that it was blood sugar, I was shocked. I called his geneticist b/c she is always trying to figure him out...its not unusual for her to call me out of the blue and have a new idea or test to try. I knew sugar problems could be a big clue. She had me grab a nurse and then ordered a slew of metabolic tests. These wont be back for weeks but we already had an appt with her on June 3rd, so hopefully it will be back by then.

No one ever knew who was in charge...the residents kept saying it was the geneticist and when we had been there over 24 hours and not seen her, I beeped her. She had never been told Gaige was admitted. She was on her way out of town. I told the residents this and one of them called her...she ordered a couple more tests. Then this morning they came in and told me they were still waiting for her to come and visit and call the shots, which of course she was not going to do. It was very frustrating.

Overnight, Gaige maintained his blood sugars without the D5 (IV sugar water)...he even had one spike in the middle of the night, which is confusing if you ask me.

Because he maintained his levels, they had us come home with a Accucheck machine and we will start monitoring it in the mornings or when we see symptoms that could be low sugars. Now that we look back, we realize he has been very sluggish in the mornings for months (he used to hit the ground running) and we were so happy he wasn't on GO that we didn't realize something could be wrong.

It was a very surreal experience for me...being the month of May and with the anniversary of Andrew's death so close, it was all too easily a reminder of the past. Sometimes its nice to remember things b/c I worry I have forgotten too much, but other times its just painful.

The update on True is that the MRI was normal...this is good. Although both the pedi and the Neuro say that this is not conclusive at this age, the scoliosis is likely from muscle tone. The working diagnosis is Neuromotor disorder which is a beginning term for Cerebral Palsy. CP is a very wide diagnosis with a wide variety of prognosis. Prayerfully, with enough Early Intervention, we will have another miracle on our hands. He had his first PT session this week and tolerated it better than we expected. He has his first speech/feeding therapy session on Tuesday. Monday he has an upper GI and an ultrasound of his hip.

Bliss had a drs visit this week too. She ordered a Physical and Occupational Therapy evaluation for Bliss. She also started her on allergy meds and some tummy medicine to get things moving, if you know what I mean. We were able to get the same agency that is working with True to take her on, but we haven't gotten insurance clearance yet.

As far as the Memphis Life of Love Project...its just not happening like we hoped. We only have a handfull of balls. Some people have donated money, so I have enough to purchase about 30 basketballs. We have called the basketball bash off and will either just drive through the neighborhood and hand them out or give them the kids involved with Eikon Ministry. We had already decided this before Gaige was in the hospital but I think its the right time. We still covet your support and prayers during that time...and would love to hear from you on May 26th. Thanks to you guys who have volunteered to help that day or donated to the project. I have learned as we have done this and we will go back to the old way next year. Thanks so much!

Everyone happily sleeping in their beds...
deb

Friday, May 13, 2005 9:24 PM CDT

Sorry for the late update, but news has been very slow today. They have gradually decreased the D5 (IV sugar water) and now have discontinued it altogether. Tonight they will monitor his glucose every 3 hours. We will see where we end up in the morning.

The general thinking is that this is part of a metabolic or endocrinal disorder. Metabloic testing will take some time to get back. Endocrinology will be called in tomorrow or will follow us out-patient.

Gaige has not eaten well today and is refusing to drink. There is no way we will be able to go home unless he is eating and drinking normally. He is still having a hard time behaviorally and getting meds every 4 hours to calm him down. However, there is about an hour in there that is the best of Gaige. Daddy brought Bliss and True to visit him (and Mommy) which perked him up. Fred delivered pizza and Slurpee tonight to motivate him to eat...pizza is his favorite and he finally ate a couple of pieces. He took a couple of sips of the Slurpee but that is all.

Depending on the sugars tonight, we will know more tomorrow. It is not clear whether we will have to stay through the weekend.

Please pray for peace for Gaige and Mom, courage for Bliss (who is staying with Nana [me]), and comfort for True and Fred.

Deb's mom

Thursday, May 12, 2005 2:47 PM CDT

This is Deb's mom, aka Nana. Gaige had to be taken by ambulance this morning to LeBonheur Hospital after he was found on the floor, conscious but unresponsive. In the ambulance, they discovered his blood sugar was 47 (normal is 80-110) so they started an IV. That seemed to be working, but 2 hours later, it bottomed out again (45 this time). They are testing for several things including metabolic issues and will keep him overnight (at least). There are no beds so he is still in the ER at this point, but if anyone wants to call, the hospital number is (901)572-3000. Gaige is having a really hard time so if anyone cheery could visit, they would much appreciate it. We will be updating this page as we learn more.

Tuesday, May 10, 2005 10:05 PM CDT

Hi Friends...

Today was one of those crazier days! True and I left home before 8a for the hospital. We got to see my favorite doc, the neurologist first. He had been on a two year medical leave and Hallelujah...came back three weeks ago! Anyway, he felt like everything is secondary to a Neuromotor disorder. This is a precursor diagnosis to Cerebral Palsy. He said True was a puzzle and likely had more than one diagnosis or syndrome. I am putting a link here if you want to read a little more about hypertonia/neuromotor disorder/cerebral palsy. He also felt True has scoliosis.

http://www.ninds.nih.gov/disorders/hypertonia/hypertonia.htm

True had an MRI next...it was supposed to take about 45 minutes. They used regular sedation. They were two hours late on doing it. Poor baby hadn't eaten since 4a and hadn't slept either (they didn't want him to) until the test started about noon. At 1p I stuck my head in and they told me they had given him a second dose of sedation and couldn't get him to sleep. He startles easily and every time they turned the machine on, he would wake up! (MRI's are SOOOOO loud!) I figured living with Gaige would have him used to every noise but not so! Anyway, it took another hour before they were able to get all the pictures of his brain and spine.

Tomorrow Bliss has her four year old checkup. Hopefully, while we are in the office we can get the results of the MRI. The Neurologist is going to call us too.

Poor Gaige was throwing up right before he left school and then fine for a few hours and then threw up again. Hopefully he will be better in the morning, or we may make going to the Pediatrician a family affair tomorrow.

Ball collection for the LOLP has been extended until the 15th as participation has been much lower than we anticipated. If we do not at least double what we have now, then we will not have the Bash and just get a list and deliver Bballs to the kids on the list.

Thanks to all you guys who have left encouraging words for our family...it really helps get through the hectic and trying days. We love you!

Tuesday, May 10, 2005 9:12 PM CDT

Hi Friends...

Today was one of those crazier days! True and I left home before 8a for the hospital. We got to see my favorite doc, the neurologist first. He had been on a two year medical leave and Hallelujah...came back three weeks ago! Anyway, he felt like everything is secondary to a Neuromotor disorder. This is a precursor diagnosis to Cerebral Palsy. He said True was a puzzle and likely had more than one diagnosis or syndrome. I am putting a link here if you want to read a little more about hypertonia/neuromotor disorder/cerebral palsy. He also felt True has scoliosis.

True had an MRI next...it was supposed to take about 45 minutes. They used regular sedation. They were two hours late on doing it. Poor baby hadn't eaten since 4a and hadn't slept either (they didn't want him to) until the test started about noon. At 1p I stuck my head in and they told me they had given him a second dose of sedation and couldn't get him to sleep. He startles easily and every time they turned the machine on, he would wake up! (MRI's are SOOOOO loud!) I figured living with Gaige would have him used to every noise but not so! Anyway, it took another hour before they were able to get all the pictures of his brain and spine.

Tomorrow Bliss has her four year old checkup. Hopefully, while we are in the office we can get the results of the MRI. The Neurologist is going to call us too.

Poor Gaige was throwing up right before he left school and then fine for a few hours and then threw up again. Hopefully he will be better in the morning, or we may make going to the Pediatrician a family affair tomorrow.

Ball collection for the LOLP has been extended until the 15th as participation has been much lower than we anticipated. If we do not at least double what we have now, then we will not have the Bash and just get a list and deliver Bballs to the kids on the list.

Thanks to all you guys who have left encouraging words for our family...it really helps get through the hectic and trying days. We love you!

Thursday, May 5, 2005 4:52 PM CDT

UPDATE: The MRI is scheduled (you can check the calendar link below to see all our appts)for Tuesday Morning right after we see the Neurologist. It should be a very informative day (although we probably wont have the MRI results for 24 hrs). I will leave the original journal entry up until we get results, so that everyone can read it. Thanks to you guys who are checking back and have signed the guest book!

Yesterday, True had an appointment with the Pediatrician. We were there to check his progress with his many feeding issues. However, I went with my big list of questions since we had gone to appointments with the Geneticist, Neurosurgeon, had a swallow study and speech eval since our last visit with her.

My other main concern is that Fred and I had noticed that when we tried to stand True up on our legs while talking to him that he didn't put the left foot down right away...like placed it on the side and he wasn't bearing any weight on it after he did get it down. She was extremely concerned about this. There are so many things that are affected on his left side that this is yet another clue that something is going on.

About the feeding, she referred us to our GI (who has seen all three other kids for different reasons) and ordered an Upper GI test. She kept him on Prilosec and b/c of the swallow study they are having us use a thickening gel in all his bottles to stimulate him to swallow. So we are going to wait until next month to see if we need to stop the Nutramigen and put him on a prescription formula.

She also said that the GI issues were somewhat manageable since he is gaining weight and she is WAY more concerned about the neurological stuff going on with him. We see our Neurologist (who also sees all three other kids) on the 10th. She ordered an UltraSound of his hip looking for dysplasia and also an MRI of the Brain and Spine. We don't know when these tests are going to be yet, but we will keep everyone updated.

I was expecting some discussion on the Neuro and leg stuff but I am wondering if I was not as concerned as perhaps I should have been. Her attending came in and told us they found the muscle tone issues disconcerting. We are confident, as we are with all our children...that they will fulfill their destiny on this earth!

True has the best temperment of all my babies and is happy all of the time...so i know God has big plans for him!

Today he had a Developmental Evaluation with the Early Intervention group and then a PT eval later in the day. The PT pointed out several very different problems...such as scolliosis (curvature of the spine), a neuromotor disorder and then the neck and asymetry issues. She also thinks that he will need banding (a helmet type of thing) for his head shape.

Gaige's behavior is becoming more challenging as the school schedule winds down...any changes in the day means hard times at home. He will be going to summer school b/c he loses skills even over the weekend but he hates to miss school so he is happy about it!

Bliss is my helper at the drs and even learning to do some constructive play time with True (physical therapy type stuff)...which is so cute.

We are busy collecting basketballs this week and planning the project. (If you dont' know about, check out Andrew's website).

I hope you guys will stop by and visit and leave messages on the guest book for the kids...we will read them every day. So many of you email to check in on things and I just haven't had the time lately to keep everyone up to speed, so hopefully you can check out site and get the lowdown.

thanks for reading!

Wednesday, May 4, 2005 4:05 PM CDT

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