I need to decide what to do with this blog. Do I want to keep it or just post on my family blog now that our princess is home. There is definitely more pics and stuff on the family blog.
Today Arina had an ENT appointment and a swallow study. First, the good news.. although her nasal airway is extremely small, he thinks its ok to try and sedate her without general anesthesia. Of course they'll be ready if she tries to pull anything, after all, she does have that extra chromosome that screams naughtiness! The bad news.. she aspirates just about everything you put in her mouth! She aspirated nectar thick. They tried honey, but she just cried because she couldn't suck it out. They wanted to put an NJ down right then. I called my ped, and she wants to consult a few people before going forward with a tube. We hate to take a baby that is eating great, and create an oral aversion by taking her food away. And since we've only had her a week, we don't know if she gets frequent pneumonia from aspirating. I'm torn, on one hand, I am the one that said she needed a swallow study. She sounds horrible when she eats, and super junky afterwards. On the other hand, I am enjoying feeding a baby again, and although we knew when we adopted another DS child, that these things can happen, I really don't want a tube for her! So the next couple of days will be some real soul searching on what to do for our princess! Also, I want to get a double stroller, but I'm torn as to which kind to buy. I was leaning toward the jogging ones, they seem to be the lightest. Any double stroller is going to be bulky, but the front and back ones seem heavy and hard to handle. Also, I need to find one that will have room for all Jax equipment. Any ideas would be greatly appreciated if you have one you really like!
Jaxson was born on Nov.20 2005 with Trisomy 21. He has spent half of his short life in the hospital. He has heart defects,pulmonary hypertension,severe reflux,sleep apnea, and a hypoxic brain injury that resulted in severe siezures.This is his journey.