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Hi everyone. I am sorry I haven't posted in so long, my computer was having trouble loading the site and it was taking forever. It seems to be better now, I have no idea what was going on.
Cade had his endoscopy with biopsies in January. He did well with it and we found out that he has reflux ( I was surprised! ) and so now he is on Prevacid.
Anyway, Cade had appointments with his pulmonologist and his GI doc last week on Monday. The pulmonolgy appointment went great - he sounded great and he doesn't have to go back until April unless we have problems. His GI appt didn't go as well. The good news is that he did gain some weight - YAY!! But the bad news is that his GI and the nutrionist are still very concerned. I know they are worried about nutrition and brain development. I don't know if they are like this with all kids or moreso with Cade b/c he already has challenges and damage to his brain. His GI doc wants him to see genetics just to make sure there isn't something going on there to cause this. We have done some basic genetic testing through bloodwork that was ordered some time ago by his neurologist, but it all came back normal. GI wanted to see him back in a month and she wanted him to see genetics first but the first appt they have isn't until April 14th. So we are seeing genetics that day and then the GI after. When we go in March to see his neurologist, they will weigh him just like they always do and if he hasn't gained any weight or if he has lost weight his GI wants them to page her. So if he doesn't gain weight by then, I think GI is definately going to want him to get the g tube. I am stressed about all of it, but just trying my best to get nutrition and calories into him.
His private OT and I decided to re-evaluate his eating just to see how he is doing since he hasn't had feeding therapy since he graduated from feeding clinic in January 2005. So yesterday I took food and she evaled him - he did great. She does think that he may be burning alot of calories with anxiety so I just have to keep working to get more calories into him. Yesterday was a really good eating day for him, today is so-so, but I will take that over bad!!
We have follow-ups with Endocrinology and Immunology on the 26th of this month.
That is where we are now, I am trying not to stress too much but I don't always do well with that.
Prevacid was a miracle when my daughter was having really bad reflux. I hope it works as well for Cade. It might make him a lot more comfortable to eat more too.
I hope everything with the testing goes okay, and he gains weight so they don't have to put him on a g-tube. I'm thinking of you, please update us as often as possible.
~Beth~ Wife to my Airman Chris, and mommy to: Anthony Nathaniel (8/31/04), Anastasia Fae (8/01/06), Baby C (lost on 10/12/07), David Cillian (7/31/08), Charles George (4/29/10), and Alan Christopher (2/22/12)