Saturday, October 16, 2004

Jenelle gets her wheels!

Jenelle got her wheelchair/stroller Wednesday morning. This thing is awesome - turns on a dime! It really is more like a "wheelchair" in that it also has a tray that can be used for feeding and/or playtime, but also like a stroller because it can be collapsed. Took me a while to figure out how to fold and unfold it, and its heavy, but no more than the double jogger stroller we got as a hand me down from our neighbors. I've decided I need a new car! This thing barely fits into the trunk of my Honda Accord - Brett thinks I'm nuts. He thinks Jenelle's new wheelchair is no reason for us to go out an get a new car payment! Oh well, I guess a girl can dream, right! ;) And sadly enough, this girl wants a mini-van - God I'm getting old!

We met with Jenelle's blind school Thursday to discuss the results of a recent development test she received. These meetings are never easy. It is hard to hear how she is doing so many new things, but yet she is still at the developmental level of a 3 to 6 month old. I decided a long time ago not to focus on these developmental "charts" and milestones. It is much easier to focus on what I see as improvement rather than the level where she is at. We should have our official meeting with regional center in the next month or so. As always, I want to increase her therapy, but we realize you cannot push her as one devastating seizure could set her back many, many months. I am hopeful for the progress she is showing, and am sure that it will continue to improve.

So, what is she doing that is new you ask? Jenelle bit me the other day! Normally, I'd be upset because this is such an issue with Jack, but for Jenelle, it was such a wonderful thing to see. I was lifting her out of the bath, and had her in an uncomfortable grasp - my arm was kind of digging into her rib cage. She of course was making noise that she wasn't comfortable, and then she bit me on the arm! I was so amazed, I carried her into Jack's room where Brett was reading him a bedtime story. I told Brett that Jenelle bit me, and then showed him her teeth marks - and Jack immediately yelled, "Mommy, Jenelle gets a time out!" Too funny. Also, the other morning, Brett noticed that while I was trying to seat Jenelle in her stander, she was repeatedly slapping and hitting me with her arm and fussy until I got her strapped in. Apparently, she didn't want to do that! Hopefully, these are good signs that she is starting to try to communicate her likes and dislikes. It is a wonderful thing to see!

Jenelle's 2nd birthday is next Friday - we are planning a day at Disneyland with a small party on Saturday. My, how times files but yet how busy these past two years have been. Jenelle is doing well with the dose increase of Lamictal - we are halfway there. She still has bouts of insomnia, but slowly she is sleeping longer. Unfortunately, Brett and I are not seeing much difference in her seizures. We'll just have to wait until we are at the full dose to make a better decision. And finally, we got the paperwork for Jenelle to apply to the Ketogenic Diet program at Huntington Memorial Hospital in Pasadena. In addition, I've decided that maybe we should first get an evaluation with a doctor I found in San Diego who is apparently "world renown" in Metabolic and Mitochondrial diseases. If Jenelle has a metabolic or mitochondrial problem, the Ketogenic Diet could be very dangerous, so it makes sense to do this first. Of course, we are jumping through the HMO referral hoops - so I'll just have to keep you posted.

Thank you all for the continued prayers and support. We greatly appreciate it.

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