Just wanted to send a quick update since my really exciting update from last week. The very next day, UCLA called and they want to schedule Jenelle for the week of March 14 or March 21 - all this depending on test results and of course bed availability! I'm hoping for the 14th as my Mother will be here the weekend before, and she will be able to just stay the following week with Jack while we are staying at UCLA.
Speaking of Jack... he is such an amazing big brother. I didn't mention this because my update was long enough already, but when we picked him up after our trip to UCLA last week, he of course asked how Jenelle's doctor's appointment went. He understands now that Jenelle is "different" and that she has a "broken brain." We don't get the tantrums anymore when we tell him we have to see her doctor, and he is usually very genuinely concerned about each visit to the doctor. So, I told Jack that Jenelle was going to get to start a "magic diet" that may help stop her seizures and help "fix" her "broken brain." Jack then said, "Maybe then she'll start talking and then she can play with me!" We can only hope.
I spoke to the nurse for Dr. Haas last week and he has finished reviewing Jenelle's medical records. He said he did not think Jenelle had any mitochondrial disease and that if we really wanted to ease our minds, we could do a muscle biopsy, but in his opinion, it wasn't necessary. That is a relief in a way, and I feel comfortable that we will only need to run the blood test that Dr. Shields is planning. He said nothing about metabolic issues (which is the main reason I sent the records) but I think I'll wait until we get her recent test results back since UCLA is already running these tests for the diet. If anything comes of the recent tests, it may be worth a call back to clarify things. Speaking of which, getting Jenelle's tests done was not easy. This time however they were able to get all the blood they needed in one poke, however collecting urine was another chore. With Jenelle always in a "lying down" position, and with constant wiggling, it is difficult to get anything in the bag we are supposed to use. Finally after three days, I was able to get a "small" sample and I'm hoping that is enough for the tests that need to be run.
Thanks again for continued prayers for Jenelle. Thank you also for the prayers for Jenelle's friend Lily. Lily is now home and is recovering well, but is still having some generalized seizures, which the surgery was supposed to stop. We are praying this is just a part of the recovery process and that after a while, they disappear again.
I'll keep you posted!