Monday, October 25, 2004

Princess Boo is Two!

Jenelle (our "Princess Boo") turned two last Friday. I can't believe its been two years! To celebrate, we started the day at Goofy's Kitchen at Disneyland for the character breakfast. We were seated in a dark corner booth, which originally had me a little upset, but then I realized it was perfect for Jenelle as she sees better in the dark anyway! Jenelle was seated in her new wheelchair when Goofy stopped by. He pointed to Jenelle and made a gesture like "what's wrong?" so we told him all about her. He was very good and went up to her very slowly and tried to interact with her by tickling her face softy. It was awesome! I think because his face was black and white, she could really see him. Brett's Aunt Nicki told her "Jenelle, It's Goofy!", and Jenelle said "Goo" in response! Not sure if it was on purpose, but it was certainly the right sound! I was so impressed with the characters and their attention to Jenelle - Disney has really trained their employees well!

Later during breakfast, Cinderella came to wish her Happy Birthday. Jenelle could not keep her eyes off Cinderella (who was in a very sparkly dress) and hopefully I have an awesome photo of the two looking at each other (I hope it came out!) Jenelle made lots of noises for her too, and really seemed to be stimulated by the whole thing! It was a wonderful start to the day. We then went to Disneyland where big brother Jack rode the Haunted Mansion twice! All in all, both kids really enjoyed the day, and we hopefully got some really great photos!

On Saturday, we had a "Princess Party" for Jenelle at the house that included a "Princess Club House" bounce house. Jack was thrilled and could not stop talking about the "presents, balloons, silly hats and goodie bags" (something he got from a Dora the Explorer episode!) When we sang Happy Birthday, Jenelle seemed to know it was all about her and raised her eye brows in response to "Happy Birthday Dear Jenelle." I purchased a special "Birthday Princess" party dress for her to wear that had feathers on the bottom and shoulders. She seemed a little upset by the feathers, so she didn't wear the outfit for very long. A fun time was had by all - I'm attaching some photos of Jenelle in her special dress!

Unfortunately, during this past week we have really noticed a significant increase in Jenelle's seizures. In fact, during the party, Jenelle had 3 very long myoclonic seizures, one on top of the other, both lasting about 3 minutes or more. I am usually fairly comfortable with her "daily" myoclonics, but this had me wondering if we needed to use Diastat, so I called the on-call Neurologist that night. He suggested we watch it carefully and use Diastat if she were to have 9 or more "clusters" (3 or more seizures) in an hour. All day Sunday and again this morning, Jenelle still had many more seizures - this really started to worry me. I put in a call today to UCLA and spoke to Dr. Shields just now. He said that sometimes an increase of Lamictal can cause an increase in seizures as well. He instructed me to decrease Jenelle's Lamictal immediately (no weaning) by half, and maintain this dose for another two weeks, then give him an update. It may be that Lamictal is not the right drug for Jenelle after all. I'm really disappointed because I was so happy with her overall development and alertness on this drug. But obviously, if it is not stopping her seizures, there is no reason to continue it if is isn't effective at a lower dose. I really hope it is just a side effect of the drug, and not some new development.

Jack and Jenelle both received flu shots a week ago. While at Dr. Patel's we discussed Jenelle's status, and I requested a referral to Dr. Haas at UC San Diego. Dr. Patel agreed it was probably a good idea to check out metabolic and/or mitochondrial disease (the later of which we have not tested at all) in addition to seeking authorization for the Ketogenic Diet. It is my understanding from other parents in the area that Dr. Haas is the leading metabolic and mitochondrial specialist in the area, if not in the nation. His office does not have an appointment available until January 2005, but they were willing to review a copy of Jenelle's records prior to an appointment, once we got authorization approval from our HMO of course… alas… more hoops to jump through! Tomorrow is Jenelle's 2 year check up, so hopefully I'll get an update on our HMO authorization requests.

Oh yes ... I mustn't forget to let everyone know… Jack finally reached 30 potty stickers! Saturday night after the party, Nana, Poppa George, Jack, Jenelle and I went to the pet store and purchased a fish aquarium, along with 4 fish. Jack named them "Nemo, Sebastian, Mickey (because the fish actually has Mickey Mouse on its tail!) and Minnie (for lack of better name!)" He is so very proud of himself and is really enjoying his new pets.

Thank you all for the continued prayers for Jenelle. I will continue to keep you posted on the Lamictal decrease - hopefully something will work soon - this poor girl could really use a break in seizures!

No comments: