Thursday, October 22, 2009

We Need House

No, not a home...we have one of those. We need House, M.D., to help all the pediatricians, lab folks, and surgeons figure out what is wrong with my son. Because no one, and I mean no one, knows what is going on in his tiny little body.

So, about five months ago I wrote a post about my son's refusal to grow. Well, guess what? Over a year after his second surgery, he is the in the second percentile...still the exact same size as he was at 10 months of age. The good news is that it means he doesn't have to have anymore surgery for a while, because his brain isn't outgrowing his skull. This was confirmed with a check of his optical nerve, and there's no pressure, so he doesn't need to come back and see the surgeons for a whole year (barring any big changes or a problem at his eye check-up in 6 months).

The bad news is he isn't growing, period, and no one knows why.

He's been tested for CF, and when I go to his appointment on Tuesday with his new ped group, we'll have to get a referral to a pediatric endocrinologist to check his pituitary and thyroid, I suppose, but I'm just afraid he'll stay this way forever (and don't tell me that doesn't happen, because it does). I'm just afraid he'll stay this size or at this developmental level, or both, and that isn't the life I want for my son.

More appointments this coming week (regular pediatrics and another OT appointment), and hopefully we'll find a good endocrinologist for him. :/ Keep the little guy in your thoughts and prayers, please.

6 comments:

Ms. Bar B: said...

Yes, Brooke is pretty amazing, and I think Lil' Monkey is just as amazing, but in a different way. I don't think he will be a Lil' Monkey forever =). I hope the docs can figure out the puzzle soon!

A Voice in the Wilderness said...

Uncle Joey and Aunt Jacque

Little Monkee may be small but there is no moss growing there. He is a very anylitical thinking critter. We could see him taking in everything and thinking about everything he saw at the birthday party. He may not be talking but he definitely is thinking.

Village said...

I will keep him in my prayers.

You seem to have great insurance. Can you do genetic testing?

My BIL and SIL had a first child that wouldn't grow or suckle. They traveled all over for 18 months looking for an answer. It was Prader-Willi. They were relieved when they finally had a diagnosis, and the child is an absolute joy.

I'll pray you get a diagnosis, because the unknown is so much worse.

arbormom2 said...

You & your family are always in my thoughts & prayers. Thank you for keeping us posted on the latest & greatest trials, tribulations & daily living. You are an amazing woman, wife, mother, & sister. Seeing the pictures & all the smiles your light & love just shine through for everyone else. You truly are an example of what most of us wish to be. Keep your faith & know you are forver in our prayers. You have an incredible ability to share stories & make the reader laugh & cry. Someday you need to write a book so your inspiration can be shared with many.

morganna said...

It must be so difficult not knowing what is wrong. I hope you and the docs get it figured out soon -- and if not figured out, at least what he needs to grow and do well. Good luck, and you're in my thoughts.

Anonymous said...

Has he been tested for Celiac disease? If not, look into having the doctors test for it. The blood test for Celiac is NOT accurate for small kids. The only accurate test for children is an intestinal biopsy. It can cause lack of growth because in people with Celiac, gluten destoys the celia, or hairs in the intestines which is the way the body absorbs nutrients.