My baby girl is now an 11 year old young lady. She had a couple great birthday party's and was so happy with all the hoopla!!
She had a birthday slumber party... whew... 7 giggling girls!!!
The whole gang...
We had planned a face painter and balloon artist to come and entertain, but she cancelled the day of because her whole family had the flu... so i had to (quickly) come up with some ideas... I got tshirts and let everyone have at the paint!!! It was a lot of fun!
Hannah's masterpiece.... :)
The next week, we had a birthday party at my parents house. Nana gave her a very special necklace.
Cheerleader birthday cake!!!! oh yeah!
This was a military appreciation event we went to. I love this pic!!!
Seizures have been crazy. We had increased her Depakote one more time and it really wasn't helping her seizures. She was still wetting herself and having her night time jerks. So, Dr. Neuro decided to add Vimpat to her pill regime (now on Depakote, Klonipin, and Vimpat). They gave me the titration schedule which I started a few days later. I really dragged my feet. I LOATHE medications changes... additions... subtractions... whatever. It always sucks. So, we started the titration on a Saturday. By Monday, I could tell things were not going well. By Tuesday, she was pretty much seizing non stop. By Wednesday, she was still seizing and her behavior was through the roof. It was AWFUL. I had stopped the med and had my SOS call to the neuro office. They called back with a new titration schedule. We were going to stay on the med but start it again, much, much slower. She is SOOO sensitive to med changes. So far, so good.... She is increasing Vimpat every three days, slowly working up to therapeutic dose. She is still having seizures.
I have been revisiting the idea of the VNS... vagus nerve stimulator. Talking to parents whose kids have had the surgery, researching on the internet, dusting off the old epilepsy books again.... I am going to talk with Dr Neuro about it. (I haven't addressed it with the new doc)... I am interested to see what his take on it would be. Every single person I have talked to, seizure relief or not, has said it has improved their mood. Their kids are not early as moody after the surgery. hmmm... interesting. About 50% of them have had a huge decrease in seizures. I know it's not a cure. I know that. BUT, if it can give some relief, and help her mood... I am thinking that is a good thing!!! To be continued with this topic....
I am also getting all of Hannah's documentation together to go for a consult in Chicago with Dr. Laux. She is THE expert on Dravet Syndrome in this country. Even though Hannah does not have the gene mutation, Dr Neuro still thinks that Hannah has Dravet. So he really wants us to go visit her and get her opinion. They want a lot of documents.... I am working on gettting those together, and then they will schedule her appointment.
We are also working on getting her psychological testing done. All of her teachers really feel like she has had a lot of regression and isn't doing what she used to be doing. I don't know. I really think she is just having a lot more seizures that she had been. That will look like regression. We will see....
AND.... the arm. Hannah's arm is continuing to heal nicely. In January, she went from the long arm cast to a shorter cast. Then, in February, they felt it was healed enough to switched to a brace. It's nice because she can soak in the bathtub without anything on her arm!!! She hasn't done that since Thanksgiving Day!! In March, she is allowed to go without the brace; this makes mama VERY NERVOUS!!! She still has a rod in there, afterall!!!! The rod stays in until June. Her arm should be completely healed by then and the rod will come out. This will involve another surgery, but hopefully it goes much smoother than the last one....
Whew... that was quite an update.... I will try not to be absent as long next time!!!