Not much to update other than Jenelle continues to do well and progress. We are more than half way done with our wean from Tranxene, and so far no problems or increased seizures. She will be off it completely in August, and in time for our next visit to Dr. Shields. Once we are off the Tranxene, we will stop her bi-citra supplement and see how she does. Eliminating those two medications will leave Jenelle on what is called "mono-therapy" meaning we will be using only one seizures medication. Mono-therapy would be a wonderful improvement from the days of three and four medications at a time for her seizures. At least we know what works.
Jenelle's mobility has really improved. You can tell that she really wants to walk on her own, but she is far from that. Jenelle is getting around the house now by her own form of crawling and/or walking on her knees. Her poor knees are starting to look like elephant knees, and we're looking into some sort of knee pad and/or leggings for protection. She has already worn holes in some of our favorite pants which I've been able to make into shorts - prefect for summer! The other night after putting Jenelle in her room for bed time, I was in our room and noticed out of the corner of my eye a small purple figure coming towards me with a huge smile. I was startled at first then realized it was Jenelle. She is definitely learning her way around the house, and this is problematic at bedtime.
Speaking of beds, many have asked for an update on the Sleep Safe bed. Jenelle's secondary insurance has denied the sleep safe bed, but the case manager is working with me to see if we can find another solution. I think at this point I need to officially appeal our insurance, but just haven't had time to draft the letter. We're still working on it, and in the mean time we put Jenelle to sleep on her floor and then move her to her bed when she is out. She still falls out occassionally, and of course, now gets up and "walks" out of her room before falling asleep. I suppose there could be worse things at bed time.
And finally, I wanted to share another article that features Jenelle and me. Back in February when I was venting my frustrations about the hoops we had to jump through for our HMO to see Dr. Shields, a freelance writer for the publication "Neurology Now" found Jenelle's website and the post about that experience. She e-mailed me to ask if I'd be interested in being interviewed for a story she was writing about "out of network" insurance problems. I agreed to be interviewed, and the article is currently in the May/June 2007 publication of "Neurology Now" that I received in the mail yesterday. The article is very good, and I told Brett last night that the article really makes it sound as if I know what I'm talking about! ;) (and sometimes I know I don’t'!)
I couldn't figure out how to attach a PDF, so I changed the scan to JPEG and here is the article. Click on the page to read it easier! It it not yet available on the Neurology Now website, but when it is, I'll keep a link to it instead.
Thanks for continued thoughts and prayers - I'll keep you posted.