[tri-med] Justin update

Hi everyone,
   Well, I took Justin to the doctor on Thursday, and he is doing really good. 
The doctor is wanting to consider taking him off of his apnea monitor because 
he has had NO episodes in months,,,,,  Which makes me thrilled,,,   but also a 
little apprehensive at the same time,,, I feel like it is my security blanket. 
The only things that they are a little concerned with right now is (1) his 
weight,,, he hasn't gained an ounce in over 3 months. So, they have taken him 
off of his formula and put him on 3 cans of pediasure a day at a minimum, and 
at least 2 jars of fude a day and at least 8 oz of juice. They said that most 
of the problem is probably because he is strictly g-tube fed, and he has the 
nissen, so we can't feed him an aweful lot at one time. So, hopefully, the 
pedia sure will help. (2) his eyes. One has been crossing for a while so he has 
referred him to see a pediatric optimologist. But,,, I would have to say, even 
with these two little things, the best thing of all is that for the most 
part,,, HE IS DOING WONDERFUL!!!!!!!!!!!!!!!!  They have decide to keep a 
regular check on his blood count from now on. They will test him every six 
months due to the high risk of acute myeloid leaukemia. They also have to check 
his thyroid levels very often which we just got home from doing. Poor thing,, I 
just hate to see him being stuck with a needle all the time,,, but he does 
handle it well. Better than me most of the time  :)    So anyways,, I just 
wanted to let you all know how he was doing,,, FYI his scope test is next week 
and so is his start of pt and ot!!  YAY!!!  

Heavenly wishes to all, 
Belinda mom to Justin (trisomy 8 mosaic)   and Destiny, Taylor, Jacob and Dustin
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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