Since Saturday, however, he has not been functioning well. It's very likely we've hit a stretch of bad days along with recovering from surgery. His formula may play a small role in a seizure increase but we are not sure. He is having more seizures and the tremors we experienced last year are back again. Over all, he is just very weak and lethargic. He hasn't been able to sit up alone since the surgery. Thankfully, we have an appointment with Dr. Herren (epileptologist) this Friday to discuss the seizure activity and any changes that need to be made. We're not sure what to expect from this point on. We may not recover any function. If we increase seizure medication, it's likely he will be affected as much by that as by the seizures. So, either way we have loss of function due to seizures or loss of function due to medication. We will choose the path that is more comfortable for him.
We had our appointment with Dr. Brannan, Philip's new pediatrician. He is a doctor with The Children's Center which is a facility that specifically handles complex medical conditions. We are so thankful that God has led us to Dr. Brannan and we are confident after meeting with him that he will be able to guide our care of Philip through the stages of the disease. He himself had a confidence in this area that really assured us. He was able to answer all of our questions and give us recommendations for the next areas of the unknown. We know the Lord has opened this door for our family.
I mentioned in our last post we had concluded he was blind. We continued to think that through yesterday. I pushed him into the living room when he got off the bus and his chair sat in the middle of the living room floor. He was just looking upward vacantly (which he has done often for the last week). On a whim, I reached up and made the fan blades spin. He reacted immediately and then began to move his head side to side which is his motion for spin. I was floored! We thought for sure he was blind but there was no doubt he saw that. I didn't tell him I would spin it, I just reached up and did it. I didn't turn the fan on so he didn't hear the motor. We're not sure how sight would come and go but we think it does. We'll take this time while we have it.
Joyanna continues to struggle with behavioral issues. We're having a lot of fits and aggression (particularly toward Ethan). Please pray with us for wisdom on how to help her handle this mental adjustment. These are things we had gotten under control months ago and it's hard to revisit them knowing the change is not really her fault. Otherwise, she has had a great week so far. She had a tea party with her panda the other day, all initiated on her own. I caught some of it on video. It was too cute! She's had a few more falls this week but she springs right back to action and hasn't seemed to be hurt by them.
Please pray that we will follow the Lord's leading in decision making for all of our children. Please pray for His grace as we begin to process obvious changes in decline for Philip. Please pray that this time in our lives will really help us to know the Savior in a closer way.