We are still waiting to hear back from UCLA about some questions. In the meantime I wanted to update everyone before the information was too old; Jenelle's blood test for Celiac Disease came back negative (as in she doesn't have it.) We knew it was a long shot. I sent an email last Thursday to UCLA to inquire about the "next step" in medications for Jenelle and am waiting for Dr. Shields to get back to me.
I've learned recently that my updates are helpful in more ways than one… in my last update I stated that I thought Jenelle was no better or worse on the new drug Lamictal. One of you responded (you know who you are ;) that I was incorrect in that Jenelle was more alert on the new drug Lamicatal, and that I should remember that she was too lethargic and doped up on Klonopin. It really means a lot to me to know that all of you are so involved in my updates, and that you feel so much a part of Jenelle's treatment. I'm thankful for that reminder, because
without it, I may have pushed for us to start another drug too soon!
In addition to her daily seizures, Jenelle had another grand mal (her first since August 1) last Friday. It lasted only a minute and took place during her nap at her new daycare. Our new daycare provider said it was frightening to witness but I'm glad she got to experience in a mild way what Jenelle's grand mals are like so she knows what to expect. She did not have one the rest of the weekend, so that is a good sign. I think we may start to wean Vigabatrin, but will wait for the official word from UCLA. The bummer news in response to last week's email to UCLA is that their Ketogenic Diet program is on hold again. I'm assuming it is due to budget related issues. It may be well into next year before her name comes up on the list again. In the meantime, we are happy with the results we are seeing in Jenelle. She is more alert and seems to be doing well back in her special school. Brett's Aunt mentioned the other day that it seems Jenelle is really developing more of a personality - she can be crabby at times and impatient. I notice that she is really watching things and responds to vocal prompts more easily. These are great signs of good things to come! Jenelle got her inserts recently, so be bought her first pair of shoes - "Disney Princess Shoes" from Target. I will post photos when I can.
Jack is doing fantastically well in his new daycare. They have a program where the kids get to pick out a special prize from a toy basket if they were good that day or did a special deed to make "butterfly" status. In his first 6 days, Jack made "butterfly" twice! He is very happy, and his happiness is reflected in his behavior as well which is great news for all of us. The potty training is going well too, and Jack is working on 10 days without accident. We promised him a fish aquarium if he went 30 days without an accident. I was impressed last night with what seems to be math - Jack saw he had 10 stickers on the chart and said, "Mommy, only 20 more days for a fish tank!" Bribes work, don't they? He is so smart and is also interested in dialing phone numbers. Fortunately, he can only handle 7 digit numbers as Nana's number is too many to press in a row. We wouldn't want any calls to Sweden now would we?
Thank you all for the continued prayers. We greatly appreciate it.
Thursday, September 23, 2004
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