Ever Had That Feeling......

That your missing something??

 Noah's whole life has been like that, but recently, it's just like a neon sign glowing....We are totally missing something with him medically, it's so frustrating. He has had a ton of specialists, testing, but yet, never an answer. There HAS to be a reason why he stopped eating when he was 4 months old. There has to be a reason why he gags, rectches, pukes all the time.  Most DRS say it's behavioral, well, lemme tell you, when he wakes up at 2-3am from a deep sleep and pukes all over, while not being sick with a virus, that is NOT behavioral. Yes, I do agree at times it is, such as when he doesn't want to do something, he can make himself sick, but other times he can be doing nothing and just all of a sudden puke.

I am tired of being blown off by drs because he "looks good." Well, if it wasn't for his tube he wouldn't look good. Hell, he probably wouldn't be here bc he would have starved himself to death. I really like his team at Cincinnati Childrens, but I want more. I want them to look deeper, not that I think they don't believe me about him, they have seen it for themselves the gag, vomiting from looking or touching foods. I want to know why he can't handle volume, why he has emptying issues..... They have offered advice, and treatments, but I feel like its a bandaid, that we are just covering up something bigger. I do not have a clue what it is, but it's something. It needs to be found.

I don't want him put thru unnecessary testing by any means at all, but I think he needs to be seen by genetics there, get their take on it. I really disliked the genetics here in Louisville, he was a jackass, to be blunt. We never took Noah back to him bc of his attitude and what they did test for came back fine. Again, I am happy it came back clean, but then here we are at zero again. It wasn't a lot of testing and I am sure there is more that could be done. I think that is how I feel, there is more that could be done, but because he looks great and is developmentally doing well, he's "ok." He didn't do thinks until a lot later than the norm, he didn't walk until he was almost 2, like a week or 2 before his 2nd b day. He didn't crawl until he was almost one. { I put that backwards.} Anyways, he didn't do those things bc of his low tone, well why is he low tone.....never got an answer for it.

There are so many unknowns and it's driving me crazy. Love my lil man so much & I refuse to give up.

Aging out of Early Intervention and Decisions

Ohhh....so much to think about!

Ok, so Noah ages out of his Early Intervention when he hits three. He is currently 2.5. We know we have to continue therapy sessions, the problem is where, when, how much, does insurance cover it, how many times can he go, weekly, monthly.... the list goes on and on. We can try to find a place that will accept him and if they take his insurance. We can pay out of pocket for therapy, but it is very expensive. We could inquire about an inpatient hospital program, though we aren't close enough for that to really throw that in the mix. We can do nothing at all. Well scratch that, he has to have some kinda therapy. We are meeting with our local school district preschool on the 24th of this month. As I understand, he has to "qualify" for services, be delayed enough to get services. They said they main thing that gets children in is speech, well his speech thankfully, is really great for a non eater. He tested at 3.5 year old skill level for speech. Eating issues, g tube dependency, will not qualify him alone. It's, I believe 4 days a week & I *think* 4-5 hrs. a day. So this brings up new questions....he isn't potty trained, will that be a problem? I know some preschools will only accept fully potty trained kids. Will they feed him while he is there? {This might be a legal thing and they have to, again, not sure.} Do we even want him going 4 days a week/4-5 hrs a day? I am not sure. Does he have to go everyday or can we just pick certain days we want him to attend? What therapy is offered? How is he tested to even get in? He may do great on their testing and they say sorry no he doesn't qualify and we have to look else where.

For so long, almost 2 solid years, he has had 1st steps. It's been nice, they come to our house, he has gotten PT, OT, Speech/feeding each 1 hr a week. We have became friends with most of his therapist. Though there was a few in there we didn't mesh well with, that's life. So, it's kinda a scary change. Noah has SUCH a long road ahead of him. It has taken 2 years to get him to bite food into, he spits out whatever he bites into, but he has made progress, just super, duper slow. He still eats/drinks nothing orally. He will have his tube many more years. We want to make sure we do what is appropriate for Noah, help him the best way possible. I don't want to make a choice and it not benefit him the best. Ideally, I'd like to get him in home therapy, less distractions and I can be close by..... ideally I'd love for him to wake up tomorrow and eat everything orally.....not gonna happen.

So, we will now more on the 24th--I will have a big ole pad of paper with questions I am sure. Dr's. probably hate me bc I always take a notepad with me full of questions. I just don't want to forget something and I want them to answered. Any way---if your child aged out of EI services, what did you do? Love to hear about it.....Thanks.