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Monday, July 28, 2008

Bathroom Remodel!

Ok, I'm sure most of you remember all the drama about the remodel of our bathroom and how Seaira's case worker said they were going to cover only 1/5 of it and all that garbage!
Well all my bitching worked and they approved funding for it so the state is paying $5800.00 and we will cover the remainder $1200.00 of it!
I'm so excited! Now I have to contact the contractor and find out when he's available! Yeah!!

Sunday, July 27, 2008


I thought I should give everyone a quick update on my little angel!
The last couple of days have been pretty darn good for her! I wouldn't say she is a 100% back to normal but there is a big improvement! The Kepra she is taking was increased from 1.5 ml to 3.0 ml and I think that has made the difference in the amount of seizures she had been having! Her pre-op appointment is Wednesday at 10:00 (second time for that) and her surgery is August 4th!
I'll let you know if there are any changes or updates before then!

Wednesday, July 23, 2008

Thank You Carrie!

Ok, I just had a little help figuring out how to make it so that "everyone" can leave comments!
Let us know how it works!!


Update on Seaira's appt

We had what was suppose to be her pre-op this morning, we talked to the surgeon and the surgery to have her Vegal Nerve Stimulator replaced is going to be Aug 4th up at Dorenbecher 's Children's Hospital. This the soonest they can do it. They will go in and replace the device, hook up to the wires in her neck (should take about an hour) and as long as it's working then she can come home that day, but if something has gone wrong with the wire then another incision will be made on her neck and surgery will be another 4 hours and she will have to stay the night, and I won't know until that moment!
I also get to go back up the clinic next week for the pre-op because for whatever reason the nurse didn't realize that was why we where there today?? Weird!
She did have new ex-rays done so the surgeon can have an idea of what everything looks like before he goes in there!
So in the mean time, I'm stuck at home with a child still having seizures (at night only right now) and a child that can't hardly sit up on her own, side effect of the new med I'm guessing!
I need a vacation!

Monday, July 21, 2008

Just a quick update!

First I want to ask all of you fellow bloggers how your family can leave comments that don't have blogger accounts? To those of you trying to that can't I apologize but feel free to leave an us an email for now
Now on to Miss Seaira... Her seizures have got better since her neuro has added Kepra, but she is still having them at night, last night only 3 (that I noticed) and the night before 6. She goes in this Wednesday morning for her pre-op appointment to have her Vegal Nerve Stimulator replaced so we will find out that day when surgery is (the device is 5 years old and is not working properly now). Her body isn't reacting very well to the Kerpa, she is very cranky and she can't seem to hold her body up has well, she swaying from side to side a lot!

Monday, July 14, 2008

Day 5 of seizures...ughhhhhhh

We're going on day 5 now and they are not getting any better! I totally thought today was going to be a good day, nothing happened until 4:25pm. She's had a totally of 10 since then! :o( Her appointment with the neuro isn't until Wednesday at 1:00, this sucks!!!!!!!!!

I've pretty much been stuck by her side this whole time, writing down everything that's happened, how long, what kind! I got to leave the house for about 45 minutes to run to a WIC appointment for the baby and then to go p/u the stuff from the store, that is it! :o(

If anyone feels like dropping a meal buy or something we would welcome that with open arms, my kids love pizza don't get me wrong, but I haven't been able to cook for them at all since this has started! Lisa has helped out when she's here in that department too!

Ok so people say I never ask for help and no one can help me unless I there it is! Thank you all so much! Love ya all!

Saturday, July 12, 2008

Update on Seizures

Thank you all so much for the positive thoughts and prayers!

We got out of the hospital around 9:30 last night. They did a check over to make sure there was no other illness going on..cold, fever, flu, infections..and there was nothing. They also took an x-ray of her VNS to make sure it was still connected and it was. We thought they were going to adjust her meds and then send us home but the on call neuro decided since she has an appt this Tuesday with her neuro that we wants to let him decided what to do. So in the mean time I am suppose to document all her seizures and and if they get bad just give her more Diastat. Also he chalks it all up to just being a part of Rett Syndrome! :o(
As I was typing this she just had another! :o(

Friday, July 11, 2008


Just when I think things are better, they aren't! Yesterday the 10th Seaira ended up having 5 seizures and so far today 3, I spoke with her neuro today and we had us give her diastat and tranzeen she's sleeping peaceful now. If these meds don't do the trick I need to take her in. He wants to check on her Vegal Nerve Stimulator too so he will be personally seeing her Monday or Tuesday!

Pictures from Physical Therapy

Sue Seaira's PT wanted to me to state that she realizes that the seat needs raised on the bike so it would fit Seaira better but once we got her on we couldn't take her off and do adjustments, Seaira would have gotten crabby and lost interest! With that said.....

Tuesday, July 8, 2008

Sometimes no news is good news!

Things have been going good for Miss Seaira! Monday she had her first summer time PT session which went really well, Damien came with us and he had lots of fun helping sissy with therapy. She has another one tomorrow and I'll make sure to bring my camera this time!
The baby still hasn't gone home but she's handling things so much better and she really enjoying one on one time with mom while he is in daycare, Zack should be going home tomorrow!

Tuesday, July 1, 2008

My Birthday

Well yesterday over all was a pretty good day for my baby girl! She started out real happy because she saw me leave with Zack, I had to take him to day care and when I came home she was all smiles! I ended up having a rough afternoon and I lied down with her and just cried and she was being was sweet, she kept patting me with her hand. Later she noticed Zack returned and she was back to glaring at him. When I was trying to put him down for bed Seaira hopped over to the bed was slapping my leg so I brought her up on the bed too and what does she do but glare at the poor little guy again. I keep trying to tell her we're not keeping him but it's not working yet!
She's so silly!