Yes, we are still in Texas. Why you ask? Because the plane had to be taken in for maintenance today, so therefore we are “scheduled” for tomorrow (Saturday) to be transferred to Vegas. I say “scheduled” loosely because I got my hopes up to be leaving this morning, and found out about noon yesterday that we had to be postponed for another day.
I am SOOOOO ready to get to Vegas. I am sitting here counting down the hours right now until tomorrow comes, and it is not even 10 am right now!! GET ME OUT OF HERE!!!
Hannah seems to be doing better overall. Her chorea movements have improved to the point where I would probably rate them a 3 out of 10 now where she was 10 out of 10 at its worst. She is actually sleeping during the night now, about 6 to 8 hours (interrupted a few times).
Also, for the first time ever, she is actually taking a nap RIGHT NOW! She has not napped during the day, a good nap, since we moved up here! She has now been asleep for 45 minutes!! PT has walked by twice to see if she was ready to play — nope!
Bad news is that Hannah failed the swallow study yesterday. She aspirated the liquids and sometimes aspirated the thicker, pudding-like foods. The thought is that because the chorea movements affect her tongue movements, she can’t control her swallowing mechanism that well. Hopefully this will be temporary — good thing she will get another swallow study at the NIH in September when we go back. Until then, she will be fed via Gtube primarily. We were told we can try thicker foods like the pudding and refried beans on a “special times” basis, but for the most part, we are to let her just keep chewing on toys.
That is the one thing I have a hard time wrapping my brain around. She was such an oral child. She lived on the pacifier. She loved her bottles. She always had a Little People or other toy in her mouth. Now she can’t even control her hands even to hold a toy, let alone put it in her mouth. She can’t even suck on a paci right now because she can’t get her tongue to do what it needs to.
Rounds are hopefully going to start soon, and my little girl is starting to wake up. Maybe she heard me typing and thought that 45 minutes was long enough to nap?
I am so sorry your flight got delayed!!! I know how much you want to hold and hug E & A. I’ll keep my fingers crossed for a Saturday flight.
Also, I know it’s not identical but my heart breaks every time I see pictures of B at 9 months old chewing on a blanket or sucking his entire fist. At 10 months it disappeared and has yet to come back. He won’t even reach out for toys anymore (again). Sigh.
An emotional roller-coaster.
**Hugs**
Hopefully tomorrow then! I know it sucks but the better she gets there the less time you will be in the hospital here. Still, I am sure you just can’t wait to get out of there and be with your whole family. Its not the end of the world to lose the pacifier dependence. They would have started bugging you to get rid of it soon anyway. The rest will come back. And it will not be as much of a struggle as it was to learn the first time. You are not seeing the end of the recovery. You are seeing a kid who is still so sick she needs to be in the hospital. Hang in there. I hope the hours move fast or that you fall asleep early and at least don’t have to suffer through some of them!
One way to look at the short delay is that God put the road block there for a reason and the reason may not be apperent right now. You still get to go to LV, you still get to leave and not be stuck there until Hannah is all better.
Hannah will be back to chewing and sucking on everything shortly. Just give her time. You gave me an AH HA moment. Sailor is a total ORAL baby, I just tought she was a weird baby…Now I know she’s not.
I woke up this morning at 6am (being 2 hours behind TX time) all excited thinking “WOW they are on that plane right now ready to take off”! and then I read your blog. I am so sorry Carrie that the flight has been postponed till tomorrow. I know its hard cos you got you hopes up and you cant wait to just hold your other 2 babies again and just cant wait to get out of that hospital you have LIVED in for so long!! Tomorrow will be here soon enough and I am holding my breath along with you and counting the hours with you and I wont exhale till you are on that flight.
Big hugs to you both and safe flight tomorrow.
Love,
Susan
Carrie, if y’all aren’t already on a plane to Las Vegas, I hope you’re on your way very soon. Hugs and prayers to all of y’all.
Lisa