Dom got a new tube!! His G feeds were not working point blank. We spent 2 weeks at DCMC in September. A day after his endoscopy Dom spiked a 104+ fever and was not looking good. Not suprisingly he was run a battery of tests xrays, CT, blood work, and swabs. There was nothing eye popping other than the sudden fever and stomach distention. For the 2 weeks we altered ratesm consistencies, dosages, formulas, meds...nothing seemed to help. The vomiting, wretching and distention remaind. After being home a few weeks we went to see GI again, it was quickly decided his stomach was simply NOT tollerating feeds. So that week we checked into the OR and after 3.5hrs I had a GJ kiddo. So far (not to jinx) it is the best choice we have made thus far. The vomiting and wretching are few and far in between. He is taking stuff in orally from time to time. Downside is he is on feeds 18hrs a day BUT hoping we will scale down to 12hrs if he tollerates.
In the beginning of October Dom began an eval for ELE (Early Learning Environment) at Aid's school. Today we did the ARD (Admit, Review, Discharge) meeting finallizing his goals and such. There are different programs they offer from 5 days a wk for 4hrs to 2 days a week 4 hrs, all depending on the childs needs. So I went in expecting they would simply point out his speech delayment because in my head I was the only one who saw all the delayments and maybe it was simply because I thought to much about his diagnosis. Boy did I walk out of there heartbroken. Turns out I was NOT the only one who saw these delaymetns and No it was not just in my head. Dom scored a 59 of 100 for speech categorizing him "severly delayed". He scored below the 3% percentile for cognitive and below the 5% percentile for adaptive behavior. He keeps to himself no interaction with peers, my baby sat by himslef :( His over all fine motor skill was about that of a 16-24 month old....MY DOM IS 41 MONTHS! I wanted to cry. Given a pair of scissors he didnt have the knowledge to open, when shown how to open, he lacked strength. Schools overall recommendation was to attend the max 20 hrs a week, 5 days a week. He is OFFICIALLY a student as of tomorrow!
GEEEEZZZZZ LOUISE!!!
Aid is doing wonderful in class. I got his report card the other day all mid 90's and 1 mid 80. The planning has begun for his 9th birthday!! Yes I know ME? a 9yr old?? Dont flatter me :) Last year I went all out with a surprise party this year he will probably be involved in the planning. Aid was pretty bummed a few months ago his BFFFFFF moved out of our apartmemt complex. I've tried my best to have Bryce over or send Aid that way. Its funny as I write about Aid I find myself blanking on what to write next he is well PERFECT, health, school everything.
Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.
-Arnold Schwarzenegger
