Jenelle's New Helmet!

Well, there is no news to report from the Genetics Doctor, but I am waiting for a call back. Good news is that Jenelle is doing well with her Topomax wean. We're down 50mg and so far (knock on wood) she hasn't had an increase in seizures! YAY

I decided to share a photo of Jenelle's new helmet. This is a bad photo because it is really scrunched down on her head, and makes her look all mad like a hockey player. She is getting used to it though.



Thanks for the continued prayers - I'll keep you posted!

She's on the Move!

Just a quick update on our little girl. This morning we picked up Jenelle's new "crash helmet" from the orthopedic vendor. We had a choice of pink, blue or tan and we went with pink. It is a real nice helmet; it is lightweight, soft and looks like a hockey helmet. I'll try to send photos when I get around to taking some. Jenelle will need to wear this helmet when rolling around on the floor and if she starts walking in case she has a drop seizure. She did not look very happy with it on, so we'll she how she adjusts to wearing it.

And speaking of mobility… Jenelle is finally crawling! When I dropped her off at school this morning after we got the helmet, I had a chance to chat with her teacher about her progress. I told her teacher I thought she was close to crawling and her teacher said, "She's crawling for us!" Of course, she is not very quick or very coordinated, and her "crawling" does not look like a typical baby crawling, but she is definitely on the move. Some call it "combat crawling" and she looks a lot like a soldier sneaking up on their enemy. Also she seems so happy with her new "view" of the world. Each day she is stronger at sitting up, and now with her mobility she is discovering new things and learning how to find us in other parts of the house. For example, last night I left her on the floor in the living room while drawing her bath, and by the time I returned to get her for her bath, she was almost halfway down the hall towards the bathroom. Its so wonderful to have her improving so much! I never thought we'd see this type of mobility with our little girl!

Thank you for the continued prayers and positive thoughts! I'll keep you posted!

Olympic Hockey Player triumphs over Epilepsy!

I just saw this news article on Yahoo News, and couldn't be prouder of the message it sends about Epilepsy. Click here to read the article.

Good luck to Chanda Gunn, in this coming Olympics and as she continues to live life!

2/3 update on Jenelle

We made the trip again to UCLA on Thursday to have a follow up appointment with Dr. Shields. Our appointments with him are always so enjoyable because he has such a wonderful sense of humor. He said that Jenelle looked the best he'd ever seen her and he was very happy with her recent progress. Her Thyroid test results were back, and of course one level was "slightly abnormal" but not abnormal enough to point to anything specific… this is the story of her life! We all laughed it off and said we didn't expect it to be anything other than that! Her bi-carb level is still low, so we will be increasing her bi-carb supplement due to her recent weight gain. Remember, a bi-carb measures the amount of carbon in your blood; your body needs just the right balance as too many carbons make you lethargic.

We've decided to take a chance and start altering some of Jenelle's medications to see if she can improve even more. At first we are going to increase her Tranxene at night to help her sleep and to get to a therapeutic level, then we will start to wean Topamax. I was concerned that Topamax might be the reason for Jenelle's awkward coordination and Dr. Shields said it can also have some cognitive side effects. Topomax is also the reason for her acidosis (bi-carb problems) so it would be good to get her off it completely. The problem is that we do feel it has been effective on some of her seizures, so weaning it completely is a big risk. We'll take it slow, and at least we know we can go back to what works if her seizures get out of control!

I asked Dr. Shields what would change if Jenelle tests positive for Rett Syndrome (I spelled it incorrectly in my last update, it does not have an "h" in Rett.) He said that Jenelle would still be considered to have a diagnosis of Lennox Gastaut Syndrome, however if the test for Rett is positive, then Retts will be the "underlying cause" of her Lennox Gastaut. Dr. Shields says that he highly doubts Jenelle is a Rett Syndrome baby, but she has been known to surprise us and it would explain a lot. We will see him again in 6 months!

Thanks for the continued prayers - I'll keep you posted!