We are making new friends!

I got a nice email from a mom in the UK, she signs in as adamadamum on a question/answer type site. She wanted to hear more about Makenna. I want to post most of my reply to her on my blog. So I can quit cutting and pasting and writing it over and over. Sorry, if you don't like this post- someone asked. I have panicked and/or fretted over every "label" Makenna has gotten, but not nearly as much as Sheri. I have spent a lot of time searching the Internet about all these labels/issues and it was darn depressing a lot of the time.
We try not to use any of this terminology in our story about Makenna. We hated to hear all of this but it is what we are living, every day.

Labels: Symptoms:
1. Autism, specifically PPD-NOS (pervasive developmental disorders-not otherwise specified)We got that one at about 8 months old from the Early Development Network staff. Once the first milestones weren't met the schools needed a recognized label for services.
2. Cerebral Palsy (CP), got that label about 18 months old. I remember arguing (arguing is a polite way to describe how I was acting) with a nurse to remove that from a chart she was filling out. She was right, I suppose? After a doctor explained it this way, loosely translated, "her brain does not seem to be telling her legs to "walk" or hands and knees to "crawl, and that is pretty much the definition of CP." But I didn't like it one bit.
3. Primordial Short Stature/Dwarfism. Or some form of it could be playing a part in her growth pattern. She has pretty much grown out of that category, I think. And I don't plan on asking anyone about it in the future. But it was a response based on one doctor not accepting:
4. Failure to Thrive, as a real diagnosis. Especially when used in conjunction with a kid who won't/can't nipple or eat food by mouth. But that label, failure to thrive, helped with my fight to get a button put in when Makenna was about 8 months old. We should have never left the NICU with out a g-tube/button. We did have an ng tube during that time. Horrible. We kept hearing, "give her a few months, work on the feeding at home. It will get better." Wrong. And Sheri works hard with her oral feeding skills. All swallow studies have shown aspiration. So Makenna is still tube fed.
5. Scoliosis: Started at about 8 months old, 20 degree. It progressed rapidly there for a couple years. Every six months was a bigger number. It reached 60 degrees/32 degrees. And our last check up in January, 2008 showed it back to about 47/21 degrees. She has worn a brace for 2.5 years. I don't know if I really believe in the brace. The brace was on during the rapid change. And now the ortho wants to give the brace the credit. I don't know? She had a couple growth spurts in there and some of her other systems are making big changes. But we use the brace. Every kid should go to school in a "bullet proof vest". And I could go on at length about the difficulties of a button with a brace.
6. And now, Pierpont Syndrome. Which is, I am sure, a fit. But I always said I would only be happy with a diagnosis that had a genetic test to confirm it. For a while the clinical diagnosis stuff seemed sketchy, probably because I was doing too much of it on my own? Our geneticists were very good to not speculate much, in our presence, about any syndrome. But they had to tell me what all the tests they were running when I asked why they needed more blood. But I am not claiming to be happy with any of these struggles, now am I?

Issues:
There are many and the stories are long. So I will try and condense a lot of this. If any reader has specific questions about any one thing please e-mail me. I will share what I know and hopefully you will correct me on the things I am wrong about.
1. Glasses at 6 months, strabisimus (cross eyed). surgery about 6 months later. Glasses ever since. She tends to chew on everything all the time. She has ruined about four pair of glasses and so many cable temples I quit counting. Her eye sight at her January checkup has gotten better! She went from about +6.2Spherical/+6.7 Spherical in 2005 to +2.25Cylindrical/+1.5 Cylindrical in 2007. She has always been Far sighted. Now her doctor says that has completely changed and she is becoming Near sighted.
2. Otitus Media, Constantly! Ear tubes, 3 different times, there isn't enough ear drum left to put in another pair I guess? But the holes are staying open from the last rejected t-tubes. She doesn't have pierced ears...she has something more special.
3. Hearing aids. She only had one for a long time but the hearing kept getting worse. So she uses two now. She chews on them equally. Chewing up a $200 pair of glasses is nothing compared to seeing a $1,400 hearing aid used as a binky. Her hearing is also opposite of the type of loss usually seen in children. Her hearing is much worse in the lower frequencies and gets better in the higher frequencies. It would be labeled moderate. They hate to push it to severe because mom FREAKS OUT when anyone says that....But I have read it described that way from Makenna's last ABR. She just won't cooperate for a behavioral hearing test, go figure.
4. GERD: Feeding is still a biggie. Have used Alimentum in the past. We are now on Neocate. We got some allergy testing done and may try and move her to Pediasure. Again a label: milk/soy intolerant. We know not allergic but she could be intolerant? And I agree with the GI. She did a lot better once on Neocate and we tried to go back to Alimentum and had trouble. That was a couple years ago. She still doesn't handle a fast rate. We cannot bolus feed. We use a pump and put 205ml in over an hour. She is ready for the rate/dose to be increased to just below the vomiting point. Have used a daily course of antacid for years. Prilosec currently, she is doing well on it. This reminds me to warn you at some point in the future you will get to read a huge RANT from me about generic medicine!! Be warned.
5. Vomiting! Oh, I am too tired to talk about that. It is getting better. A lot better, but not perfect. And she does it to herself more and more? The slightest breeze in her face used to set it off, but that and things like that are getting better.
6. She hates shoes and socks. Not crying about it or anything like that. But she is able to get them off now, unless they are laced up.
7. Constipation: Always been a problem. Miralax seems to still be working good for her. We have used others. The whole gut motility thing is screwy.
I will end here. That is a majority of the info that helps paint the Big Fuzzy Picture.