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Latest Journal Update
The team is also weaning his medications. We need to get him off Lasix as soon as his body can tolerate it because of the damage it can do to bones. Tyson was born with fragile bones (malnurishment in the womb), so growing strong bones is especially important for him.
The echocardiogram last week still showed pulmonary hypertension. So, this summer, they will measure the pressure with a heart catheter. I am nervous...but I am glad they are able to get a closer look at his heart to make sure that he is on the correct heart med. Right now he is on the max dose of Viagra.
Tyson is getting more steady on his feet. It is so sweet watching those little legs go!
Tyson's understanding of language is growing. He follows simple commans, like come here or shut the door. He doesn't speak very well though. Lots of gibberish and a few words here or there. I am a little concerned at this point. So, I will try to encourage him more...he's just so content to watch big brother and laugh. Maybe it's partly due to his personality???
Another goal we are shooting for is the swallow study. Tyson needs to start eating by mouth. The problem is he hates food. They told me to start off with taste stim, which basically is trace amounts of different foods put in his mouth. Tyson doesn't like that at all. I wish I could read his mind when he tastes these foods. It's very difficult to relate to anything less that loving food.
Things are starting to feel more normal in our home, normal as in less medical or scientific
:-) While in the NICU, it was hard to imagine home life being so good. We are one of the lucky ones.