Hannah update

This is one of those times that I really don't know what to say in an update...
We did see the nurse practioner when we got to neuro and I asked her why we never see the dr, she said it's just the "luck of the draw" So I asked to see him, she said we would have to wait a long time and I told her I would wait...I didn't think it would take long since we were taking up a room and I had my mom, taylor and my nephew josh (4yo) with us :) she had already told us about a new med that had just come out called banzal. We started that last night. she also said that they last time we were there and went for bloodwork they didn't do all the levels...I felt rude almost saying that I didn't order the bloodwork or draw it, don't know why she was acting like it was my fault, I had it done there right after her appt last time :( we did bloodwork tues again...
The dr acted a little annoyed when he came in, but as we talked I think he understood whey I wanted to talk to him.
I told him that we had seen a lot of regression with her in the last year or so...she rarely laughs and smiles anymore and just doesn't seem as content as she used to be. She just looks tired all the time and either sleeps a lot or just sits there in a "daze". She is having more seizures and different kinds, she has to be cathed for urine retention, etc. He said that is a progression of her syndrome, kinda like alzheimers would do to a person. I asked him why no one had ever told us that before and he said that most parents don't ask or don't want to know. I think I always knew that in the back of my mind :( and I am very realistic with things pertaining to Hannah...
I had thought I was imagining things so it was a relief to talk to him about it...
We have always tried to make sure Hannah was comfortable and don't want her to suffer a lot...please pray for guidance and comfort for us and especially for her...only the Lord knows what is going on with her....and He is in control \o/
Chuck and I talked about this later and he said he thinks that's why he kinda pulls away with things pertaining to her...and I can be a little obsessive, so pray for us to find a balance. I feel like I am alone most of the time with making decisions and anything with to do with taking care of hannah.
I am getting burned out again...haven't had anytime away for over a year...except in the fall chuck and I went to see jenn and bob in VA but were only gone for 1 1/2 days...it's harder to get away now that I have taylor too...my dr wants me to go back to aqua therapy for my arthritis and fibromyalgia but I need someone who could watch taylor for me thos couple hours a few days a week :) I am so blessed to be able to take care of taylor but she does wear this old grami out :) she is such a blessing and a sweetheart and so much like her aunt jenn when she was a baby :)
Our nursing is changing, Alice has moved but still working here for now and Patti is moving...pray that we can work out the hours with the other nurses for good coverage and hours to satisfy everyone :)
Thank you for the continued prayers for us...