[tri-med] Re: Justin update

I was so happy when I realized that we had moved from worrying whether 
Elanor was going to live, to "worrying" about how her eyes were developing! 
Glad things are going well!

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew

----- Original Message ----- 
From: "Jason and Belinda" <JayandBel@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, October 25, 2004 10:33 AM
Subject: [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
> 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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