Thursday, August 12, 2004

Jenelle met a new milestone! She has learned to wave "bye bye!" I am so thrilled! It is very subtle, but she will move her closed fingers up and down while sucking her thumb as she hears the word "bye", or will put her hand up as if to "wave" when she hears the word (if she isn't sucking her thumb!) I thought I noticed it last week, but then thought it was a fluke. On Sunday, a friend was visiting, and went over to Jenelle as she was leaving and said, "Bye Jenelle" and Jenelle waved in response! Our friend said, "Oh she waved - isn't that cute!" It was so cool!

Jenelle is doing well on the new medicine. She has been much more active and alert and it is great to see her this way again! I haven't seen a seizure since Saturday - not sure if Daycare has seen any. The only down-side to the Lamictal is that we are back to battling insomnia again! Jenelle has become the "party queen of the night" and has been staying up until 1:00 AM since last Friday, lying in her crib, making noises -her own private party! Yawn! According to some parents I've talked to, this type of reaction is common in Lamictal. Some say it went away after a few weeks, others said their kid slept very little the entire time! Oh joy! So far, we haven't seen the dreaded rash either - this is good news as well. So, I'll just keep "Knocking on wood" - its great to see and report good news for a change!

Oh yes - I forgot to add this very important piece of good news. Last Friday, we got a letter from UCLA - our next appointment with Dr. Shields is February 7, 2005! I'm not sure if they just scheduled us automatically, or if another follow up appointment was approved by the HMO, but we're keeping that appointment! I've said it before, my gut instinct is that sometime in the Fall, Jenelle's name will probably "come up" on UCLA's Ketogenic Diet program waiting list, so I imagine we'll be seeing them sooner than February 2005 (sounds so far away doesn't it?) Many prayers answered because of the many prayers from our wonderful family and friends! Keep those positive thoughts and prayers coming!

1 comment:

Anonymous said...

My heart goes out to you and your family. My daughter, Ava, has Lennox-Gastaut too. We have been unsuccessful at controlling her seizures. We have done all meds and the ketogenic diet. My heart breaks every day for her and my older daughter who so desperatly wants a little sister to play with. I will keep Jenelle in my prayers.