Well, Brett and I have actually made it to work two weeks in a row now even though this week was short starting with the holiday! It is nice to have a somewhat normal schedule. Speaking of the holiday, Jenelle did very well watching fireworks Monday night. I was hesitant to have her watch them, but also not really excited about leaving her alone in the house while we shot off fireworks in the street. She sat in my lap and really seemed to be watching the fireworks (and enjoying them!) When there was a "strobe" like firework, I pulled a blanket above her head, and sometimes it seemed like she was trying to look over the blanket.
She only had one seizure on 4th of July and it was just before she went to sleep that night. Unfortunately, that was not her only seizure last weekend. We were at a BBQ on the Saturday before the 4th of July and Jenelle had her first seizure in over a week. The strange thing about this one is that she started crying just before it happened. She had two more after that one, both where she cried just before. I figured it was over-stimulation from the party and wasn't too concerned. The next morning Jenelle had two more that were the exact same, crying before the seizure started. My guess is that she is becoming more aware that a seizure is coming on… they say some people get an aura or can actually tell when a seizure is about to happen. This could be a good thing since it would give us some warning. Other than the seizures last weekend, Jenelle has not had any since, so that is good news.
We saw the Kidney Doctor last Friday and she was absolutely thrilled with Jenelle's progress. She really has no reason to keep following Jenelle since all of the "kidney" issues have been ruled out, but she wants to follow the metabolic acidosis, since she is prescribing the bi-carb supplement. When she last saw Jenelle, her feet were blue from the acidosis and now they are pink and normal looking. Dr. Ben-Ezer was so happy, she even kissed Jenelle's little feet with excitement. She thinks the improved bi-carb levels are helping Jenelle seizures in that it increases her seizure threshold. Sounds reasonable to me. Overall it was a great check up, and we will see her again in September.
Jenelle has actually gained 2 1/2 pounds now since the G-Tube placement and is doing much better with the combination of formulas. In fact at daycare, they said Jenelle would not stop laughing all day. What an amazing difference. I called UCLA about the "different" seizure presentation we were seeing over the weekend and Dr. Shields said he wants a short EEG to see what is going on. If anything, it would be wonderful to document that her seizures are actually better now, so we're happy about the EEG. That should be in the next couple of weeks. At this rate, we hope to be back on the Ketogenic Diet in late August. Jenelle saw her Ophthalmologist today and he did not see any evidence of Glaucoma. Jenelle does appear to have a "cupping" of her right optic nerve (this is a term I am familiar with because I also have this due to my Glaucoma - unfortunately I don't know what it means) but he said it was minor, and no reason to cause any pain. Jenelle is still blind, but he did see her "tracking" some objects so he felt there was some improvement.
Here's hoping Jenelle's stability continues! Thanks for the prayers - I'll keep you posted.