We made the drive up to UCLA on Thursday for another follow up with Dr. Shields. The appointment was pretty un-eventful, which is always a great thing. Dr. Shields was very impressed with Jenelle and felt she really looked better than she has in a while. In fact, when Jenelle gave him a laugh and a smile when he ticked her neck, he told his young resident, "I've been waiting over a year to see her respond like that!"
Remember a couple of months ago when I briefly mentioned that Jenelle's urine organic acid test results done in July had come back abnormal? Well, UCLA is still trying to figure out exactly what the results mean and Dr. Shields wants to refer us to Genetics as soon as possible. He was quite honest and said that with her abnormal results still pending, he absolutely did not want to put her back onto the Ketogenic Diet anytime soon. In fact, he thinks we may only ever revisit the Diet if and when we both agree that the potential risks outweigh the her current seizure state (i.e. he feels the diet could be potentially fatal to Jenelle, and until we know for sure, it is not worth the risk unless of course her seizures get so out of hand that they too could be fatal if we don't try something drastic.) While that is discouraging, he also felt that we are gaining great seizure control with the medications she is currently taking, and if this progress continues, we may start looking at weaning down these medications a few years from now.
Of course, Brett and Dr. Shields spent some time talking about the undefeated UCLA Bruins and both seemed pretty excited about "some big game" coming up on December 3 ;) I bit my tongue and didn't mention that my Father had gone to USC for undergrad. It's difficult to root for both teams when they are both doing so well and will eventually play each other… then again Jenelle is a Bruin fan for life because they have done so much for her. Should be a good game.
We had a bit of excitement this morning as Jenelle took her first bus ride to school. Unfortunately, because of a power outage in our neighborhood last night due to a traffic accident, one of the main streets leading to our house was closed off, and the school bus was 30 minutes late! I got some great photos of Jenelle getting onto the bus and will send them as soon as the power returns to our home so I can download the photos! Jack was very excited about the bus, and waved goodbye while yelling "Have a great day Boo!"
Thanks for the continued positive thoughts and prayers. I'll keep you posted!