Friday, October 03, 2008

Vandi appts....

Well we had two of those appts in less than a week for Cameran. Anyone who lives far from a often visited childrens hospital knows what a pain it is to drive it twice in a week. But I cant really complain too much since I know some have to travel 2+ hours to get to their hospital and we only have to go 45 minutes but in Nashville traffic its always a nightmare no matter what time! We did try to get the appts on the same day but it just didn't work out. But we managed...ok enough complaining of the simple things :)

So Friday morning bright and early we where off to her follow up Sleep Study/Neuro appt. All went really well, he thought she looked great. We discussed her sleeping habits and meds. Her sleeping has gotten a little worse again even though still on Neurontin but I guess she just started to get use to it. They tried upping it and it made her sleeping get worse. So we all decided to just take her off of it and try something new. This new med would be a big step but we were willing to try it even though it isn't FDA approved in children. This is Ambien! It was between that and Lunesta, he thought Ambien would work a little better and most insurances he said seem to prefer it over Lunesta. So we were instructed to wean the Neurontin over a 3 day course and then start the Ambien...couldn't be on both at once.
Another thing discussed was her lack of speech. He said I noticed she hasn't said one word while being in here. He then asked does she speak....Well sometimes, its mostly babble, never consistent, and she doesn't put words together. A huge concern of ours, something I'm always asking and that's why is she not talking. Shes been seizure free for over a year so why is she not talking. And his response is that she should be. He says there is a seizure you can have only in your sleep that would cause speech delays but they have never noticed it on any of her tests so its not likely. But they would like to run another EEG to see if there has been any changes. Also Autism is still a possibility. She will be tested for it again in December. So for now we are changing sleeping meds and looking further into her Speech problems.

Ok so I'll go into her weekend camping and say that she did amazing. We bought her a big girl bike that she is so proud of. She doesn't know how to peddle but will sit on it and push herself around on it. She likes feeling big like all the other kids on their big bikes. Its the cutest! She loves loves loves being outside, she didn't run off from us she just hung out watching everyone. And of course enjoyed swinging on the hammocks and also playing at the park! It was another memorable weekend. And over the weekend we successfully weaned her off the neurontin.

We didn't start her on the Ambien until Wednesday and let me just say it was the 1st and only day she will ever touch that medicine. They say give her half a pill when she is ready for bed because it will knock her out. had the opposite effect she went from being exhausted gave her the pill and she zapped into a wild child, wide eyed and raring to go. We fought and fought for her to go to bed nothing worked. I tell you it was such a long night with me being very sick and her daddy being very tired from working all day. Have you know that she finally settled down at 2:00am!!! ACCCKKKKKK! On the worst night too we had to be up at 6:00 to get ready for her GI appt. Lets just say no one in our house wanted to get up and all where super moody! But once at the Drs office we where all in better spirits ready to take on another lengthy day. The GI appt went well and if you are squirmy about bowel talk you might want to skip... Basically we found out she had a large poop lodge in her belly and what was coming out is coming around it and making it mushy and very fowl because its passing around the stuck one. You could feel it in there. So they took an X-ray of her belly and took 6 blood tests. X-ray should be back soon, blood test will take a week. They are looking at her Thyroid and also testing her for Cilacs Disease specially since she has a cousin with it and it is hereditary! Fingers crossed it is not because I dont think my gal could go without her breads....gluetin! So instructions for now is to flush her out with a Sparkling laxative said it will give her the runs for 3 days so not to make any plans. fun! Anyhow girly must have known the frustration lay ahead and went poopies 3 times in a row and cleaned herself out. How I have no clue she has been backed up for 2 months now! She must of! Bad thing was it was very large and it had blood in it. My poor gal! Hopefully we will get this all figured out! Sorry for the lovely conversation but that's just part of it when you are a mommy, you just get use to the poop talk ;)

I'll keep you posted on the results.

1 comment:

Sophie's Story by Elaine said...

What a week!!! You have got to be extremely exhausted. I think I got a headache just from reading your last few posts ;)

I don't know much about BEAM studies except I think it is just a more intense EEG. Maybe that would give more answers.

Hopefully, you will get some rest this weekend. Take care.