Well we are still grinning from ear to ear with Jenelle's latest accomplishment of standing. She is still at it and is moving around pretty well these days. Unfortunately with the good stuff, Jenelle's seizures decided to show their ugly face again as well. Over the last few weeks, we've noticed an increase in Jenelle's seizures that we had hoped were due to her being sick with an ear infection. Also, in the back of my head I had wondered if with her recent weight gain of 4 pounds in a month messed up her medications a bit. A week ago I spoke with Dr. Shields about it, and he agreed it was worrisome, but wanted to watch it some more to make sure she wasn't fighting illness. Last Wednesday, Jenelle had two big seizures back to back… one lasting almost four minutes and the second over a minute (both of which are long for Jenelle.) We had the Diastat ready, but didn't use it. With these seizures, we noticed some "weird" movements again like hand twitching and such. I put in another call to Dr. Shields to find out he is out of town until the 20th. Jenelle had another nasty seizure last night going almost a minute, and she has been very healthy. We're going to keep our eye on things, but it looks like Dr. Shields may want to see her sooner than next February.
In other news, we had a minor emergency after Jack's soccer game on Saturday. I accidentally pulled out Jenelle's Mic-Key button when lifting her from her stroller to the car. It was scary at first because we couldn't find it, and we've been told that her "hole" could seal up easily if the button is not replaced immediately (thus requiring a new surgery to replace it.) Unfortunately, once we found the original button, it would not go back in properly. We have an emergency catheter to use in place of the Mic-Key button when this happens, but unfortunately I didn't have the proper syringe to seal up the catheter. Luckily, we were not far from home (where the spare Mic-Key button is kept) and I was able to hold the catheter in place until we got home. It was a little painful for Miss Jenelle too, and I felt just horrible about it. That g-tube has been so wonderful for Jenelle, we sometimes forget it is there. At least we were able to fix the situation without a trip to the ER.
So, with the good comes some bad spots too. I’m almost certain that the new seizures are from Jenelle's meds being too low, however with Dr. Shields out of town, I'll wait to do anything with the meds. Jenelle is having a feeding evaluation at CHOC on Thursday to see if she qualifies for feeding therapy. Other than that, things are good with our girl! Thanks for the prayers and positive thoughts! I'll keep you posted!
Monday, November 13, 2006
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I am very happy for you and Jenelle. Standing. I check in on her often. She is an inspiration to me, as you are too. We have not had seizures; even though, they are potential symptoms that we can possibly look forward to down the road. Last week Ivey did get a peg tube...soon the button, we hope. You have an amazing story to tell.
I bet that was scary!!
I'm so happy about the standing. Way cool.
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