NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Children's Health (https://www.neurotalk.org/children-s-health/)
-   -   Too many doctors, too little time (https://www.neurotalk.org/children-s-health/2012-doctors-little-time.html)

Carly'sMaMa 09-28-2006 04:06 PM

Too many doctors, too little time
 
Today was a big doctor day for us.

By 8 am we were at the endocrinologist. Good news is that Carly put on 3 lbs and 1 1/2 inches. She is now 4'8 1/2" and 58 lbs. We did blood tests, bone x-ray to check on bone age, and genetic blood tests too. The geneticist is sending blood to Baylor to check on CDKL5 which is a Rett mutation.

Then it was off to Shriners. We needed new velco on the AFOs, follow up with the orthopedist, and then we were supposed to get her wheelchair back. They were "growing" it. We also tried out a new stander. Well, by 2 pm no wheelchair. They picked it up from our house yesterday so they would have it ready for today. They were still putting it together. Carly was having a very difficult time.

We had a break in between appointments (11:30- 1pm). So we went over to a local mall. She screamed if we weren't walking. And her yelling just echoed. I was getting her some lunch at the food court and the looks on people's faces.

I'm pretty upset from the whole day. The growth was great, the hip was fine. But, her behavior was just horrible. Worse than horrible.

I actually got one of the docs at Shriners to find some Risperdal (because I forgot it) and we gave it to her. She was slightly calmer on the ride home. There was much less head banging and less screaming. She did whine, but it wasn't the full effect.

I am whipped.:(

langansmom 09-28-2006 06:15 PM

(((((hugs)))))

Sounds like a really hard day.

I hope tomorrow is MUCH better and that Carly is MUCH happier so her wonderful mommy can get a break.

Hang in there!

Chasesmom 09-28-2006 06:25 PM

Chase's behaviors can be just TERRIBLE - I mean awful to the point that I end up in tears wondering what the heck to do?? I know that for him being in the the hospital for a year and being totally catered too has not helped AT ALL - but how coudl we not spoil him - the whining - tantruming - disruptive behaviors have me at my wits end at times. He is on risperdal 3 times a day and it may help to take the sharpest edge off - but not that great -

Sorry this wasn't meant to be a rant about my only - only that I can understand how terribly frustrating and exhausting days like that can be and here's hoping for better days ahead!!

Dana mommy to Chase - who has stayed out of the hospital for 8 whole days now!!!!

RathyKay 09-28-2006 06:27 PM

(((Hugs))) Sounds like a loooong day and those are never fun, even if you did get some good news (weight, height, and hip). I'm tired myself, and your day made me even more tired.

Hope you get a good night's rest tonight and tomorrow is a fresh, new day.

RathyKay 09-28-2006 06:30 PM

Dana! So good to see you! Not to sidetrack this thread, but... well I do wonder about Chase every now and then. So sorry to hear you're counting days OUT of the hospital. (((Hugs))) for you, too. Continued prayers for Chase's health and that the number of days out of the hospital grows to great for you to bother counting them anymore.


All times are GMT -5. The time now is 01:11 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.