Noah's 4th of July

It is fair to say that the Fourth of July is not Noah's favorite holiday. The loud booms and flashes of constant light outside his bedroom window frightened him terribly. And of course our neighbors didn't give up the ghost until well after 1am in the morning. Which made for a very rough night for all of us.

Chris and I also took Noah for a longer car ride and it was horrible. It was the farthest away from home he's been in a car, and unfortunately it was the worst car ride of his entire life. On the way home he got himself so upset that he threw up all over himself and in addition sprayed the backseat of the car with his vomit. We had no idea that he had thrown up until we got home and seen him covered in it. We didn't hear him choking so and so far there are no signs that he aspirated it into his lungs. Chris and I have both agreed it's just much to soon for trips that are not just a quick trip to the grocery store. Noah just can't handle it yet and we can't risk his safety if he's going to get that upset in the car. Chris and I are very much worried about how we're going to get him to his neurology appointment later this month since it's a bigger car ride for Noah. He doesn't cry himself to sleep, he only grows more agitated until he makes himself sick. Sadly I wish that Children's Hospital could do house calls.

Noah has also made some great accomplishments this week. He is now trying to get his hands to his mouth. He's successful about half the time, but we're amazed that he's making the effort all on his own. He's also attempting to reach for a plush elephant toy and bring it to his mouth. He gets it there only occasionally, but he keeps trying. We're beyond happy that he's trying. Noah is still arching which is becoming harder on me the heavier he gets. I don't know if there is as cure for that. I feel bad for him, I don't think he knows how to stop, even with my guidance. He arches out of sitting positions, arches still when I pick him up out of his crib and especially when he's mad.

We're still without therapy as we received notice today that Medicaid has denied therapy. They state that Children's Hospital did not include a diagnosis code and we were therefore denied. The letter indicates I have twenty days to appeal in which case a hearing must be held before and Administrative Law Judge. I shouldn't be surprised really, this whole entire process from the beginning has gone like this. I wonder is it like this for all families or do I just have this target on my back that says get this family they don't have enough stress as it is?

We're also going to lose our There with Care program soon as we are nearing our discharge from the program. It's been a blessing having food and diapers, and baby items delivered all these months to help us. And I haven't heard from our caseworker through Butterfly for months, she's always a no show to appointments, never returns calls, so there's no help from any direction. And I find myself navigating the unknown, apparently very unsuccessfully. I keep praying that it's going to get easier, but it's not. Next week is Noah's neurology appointment and who knows what Medicaid is going to do with that. I don't trust anything anymore. I feel like I'm constantly digging us out of holes, making phone calls and crying in my beer. Honestly I feel like I'm breaking down. I'm just exhausted I don't know how they can expect that one wouldn't be. Maybe they hope that is what happens, that you get so discouraged that you just put your tail between your legs and go away. I wish someday this seemingly permanent rain cloud would just let some sun in.

I've attached some pictures of Noah on his first unahppy 4th of July...

Love,

Stacy, Chris & Noah