Philip has been on fall break for two weeks. He'll return to school on Monday hopefully. We set out to regulate his sleep schedule at the beginning of fall break. He was wanting to take a really long nap during the afternoon and stay awake at night. We were having good progress with shortening his naps but he wasn't sleeping much longer at night. Then he wanted to be sleeping in the morning for a short time, in the afternoon and in the early evening. That was not how we wanted it to go. We are at sort of an impasse now. Readjusting his sleep pattern will be more challenging than we thought. We're not sure whether to just let him sleep when he wants or give it a more concerted effort. Please pray for the Lord's wisdom in this matter. Otherwise he is still pretty content and at times happy.
Joyanna was obviously beginning to suffer from more seizures (in quantity and duration), so Ben and I talked and prayed and decided it was time to add another seizure medication. We did not want to increase the current medication because it did not seem to be controlling the smaller seizures and it was effecting her behavior. We wanted to begin trying to get a medication (Onfi) that the insurance company makes you jumps through hoops for. You have to try several other medications before they will pay for Onfi. It has worked really well for Philip. Joyanna has started on the first trial medication (even though it's not the trial medication we were hoping for) but the good news is that it has worked phenomenally. Just on the first starter dose, she has had very little smaller seizures and no side effects. It's great to see. I know the Lord was in that change. That's why we ask you to pray for His wisdom and guidance in our lives. Things like this happen. She is already experiencing some fine motor control problems mostly due to the progression of NCL. The seizure control will probably help it a little bit though. She is also struggling with focus and cognitive skills a little bit. She is still loads of fun and we enjoy every day.
The exciting news that we get to share with you will also make a happy fall. Make-A-Wish has approved a trip for Joyanna to the San Diego Zoo and Sea World. We are so blessed to have an opportunity like this. Both of our kids were referred to Make-A-Wish and both have been accepted. We decided Joyanna would like to take a trip and do something we wouldn't normally get to do. She loves animals. She has enjoyed our own zoo but we know a trip like this will be so special. Ben, Joyanna, Ethan and I will go from November 14-19. We have decided to leave Philip in OKC with family when we go to San Diego. He would not be able to enjoy a trip of this kind and we think it would be too much for him. It was harder to compose "a wish" for Philip and we haven't heard which option is approved so more on that later. Please pray that even in this God will be glorified and that His will be accomplished.
We're back to struggling with allergies and the aftereffects of a cold. Both Philip and Joyanna have been struggling the most. The drainage has caused lots of coughing and other related issues. There is so little you can give children for these symptoms and they are just not clearing up well. Please pray with us that we will make decisions appropriately for them. For Philip especially, we have to be very cautious about pneumonia. We do have a good team of doctors to direct our questions to.
Thanks for praying for us. God is working in our lives to be sure. We have experienced so many blessings in such circumstances, it is obvious He holds us in the palm of His hand. To God Be The Glory!