Friday, July 15, 2005

Another great week for Jenelle!

Jenelle has had another really great week - eating well, gaining weight, and sleeping well! YAY! We are really starting to notice Jenelle's weight gain in her face and legs. I haven't weighed her recently, so I don't know the exact pounds she has put on. Another way we've noticed the weight gain is in her shoes - her AFO supports (the pink ones) no longer fit because her feet are too chubby! So, we'll need to order new AFOs, which will be a pain, but its great to see this healthy change.

Now, we have a rather strange request for everyone… we need everyone to wish, pray or send vibes that Jenelle has seizures on Tuesday at around 11:00 to 1:00! I know, it sounds weird, but Dr. Shields has scheduled Jenelle for a short EEG on Tuesday at 11:00 to make sure her "new seizures" (the crying/laughing ones) aren't something to be concerned about. As for seizures, she has had a few this week, but none of the crying/screaming ones she had around 4th of July. So if you could think of us on Tuesday, that would be awesome! Dr. Shields is leaving later next week for Europe and will not return until September. He specifically wanted Jenelle to have this EEG before he left, so let's hope it can be useful to him.

Many of you have commented to me that until my last update, you did not realize Jenelle was blind. I guess I don't talk about it much because it really is a minor thing compared to all of Jenelle's medical issues. Cortical Visual Impairment is something that really acts like a light switch, and can simply come and go. There are times when she sees well, and times when we can tell she isn't seeing at all. Brett has suggested that Jenelle's sudden crying fits may also be attributed to her vision - she starts crying because the "lights go out!" We may never know, but it seems reasonable. Basically, her eyes are normal, but the "wiring" from her eyes to her brain does not function properly. The good news is that we are told with time and therapy, the vision will improve. But for the most part, Jenelle will always be legally blind.

Work has been crazy busy for me which explains why I haven't updated as frequently. However, in a strange way, it has been a nice change of pace to be stressed about something other than Jenelle! Brett's work has been busy as well, and Jack is enjoying summer with a new "buzz cut" and swimming as much as possible!

Thank you for the continued prayers - I'll update next week sometime after her EEG. Remember - think "seizure" thoughts around 11:00 on Tuesday! :)

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