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...

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no nursing again :(

Well, we were supposed to have a nurse tonight but at the last minute she called out :( so it's just us again on another Friday night…thanks for praying for us…it's just getting frustrating now…nurse sean is still in the hospital…he has tuberculin menigitis…hannah's pediatrician did a TB test on her and it was fine…
joan

ok, I guess I should have looked at the calendar...they did find hannah a nurse for wed night, but I forgot our sweet alice was on vacation for tonight! we have our LIFE cell (small group meeting tonight here. so far, at 4 pm, they haven't found one...this is getting old, real fast!
so far, today has been a not too bad day with seizures :)
Taylor is getting so cute, she is saying mama now...she weighs 18 1/2 lbs and hannah weighs 34 lbs!
here are some new pics of the girls and one of my 4 yo nephew josh on his bd in his new "cars" bed..he just loves it!

Hannah update

so, as usual, they were not able to find a nurse for friday night...I did enjoy my day at Jordan Essentials though...3 hours there and back for a 2 hour meeting...thanfully, tamera drove :)
wed night we don't have a nurse so far, our usual nurse wants her bd off....not sure why she can't work since she only works 2 days a week anyway...so please pray that someone will be able to work...this is getting real old...and in the middle of the week is really bad :(
continue to pray for sean, her nurse...he has tuberculin meningitis and is still in ICU.
Hannah has been having more seizures lately, and some of them are a little different...
I have to take both girls to hannah's Medical
assistance review tomorrow (by myself) and 2 appts for me on wed and friday...so I may have to take both girls to everything...please pray for me :)
thanks for your continued prayers for hannah.

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family updates

Hannah is still having more intense seizures...one day this week she had one that lasted 2 minutes! Normally her seizures have been from 5-70 seconds.
Taylor has been sick with a cold so I have been really washing my hands a lot between the girls. Taylor is still running a slight temp and lots of secretions but now Hannah has a cough and more sceretions and a slight temp...pray that neither one of them gets worse.
BTW, please continue to pray for hannah's nurse Sean, he has been very sick for a couple weeks and the last I heard he was still in the ICU. He is our fill in nurse and also works every other Friday night..I just found out that he has spinal meningitis.
jenn & bob will be here later tonight...it will be nice to have them home for a couple days..I really miss them but know that they are following the Lords will where they are.
taylor is now an "independent" sitter...she can move around a lot while sitting and just loves to play with toys...she laughs and smiles a lot at things....even my singing she smiles at :)
we started having LIFE cells from our church a couple weeks ago..we are having it here since it's hard for us to get out with Hannah. This way we don't have to rush and if the nurse calls out, we are right here. we have a great group and I am geting to know a few people a lot better than before...I only get to church on sunday mornings...I can't got to sunday school, sunday nights or wed nights, so this is really helping me get "connected" with other Christians.