Otherwise, we got Philip’s wheelchair and it works so much better to stabilize him and make him comfortable. We still have to tweak a few things but it’s a great fit. We still have not gotten tetrabenazine to make the switch to that medicine. It’s not so bad when the wait occurs before you start a medicine. It seems much more of a priority when a refill is stuck in the system.
I spoke with the genetic counselor at OU Children's who is now helping me get information on Brineura (enzyme replacement for Joyanna). She has spoken with the geneticist. They have contacted BioMarin to see exactly where things stand. She should have an answer for me by next week. They have also contacted another doctor at OU Children's who is familiar with these types of shunt reservoirs for infusions. She will get with the geneticist to explain what we can do ahead of time (CT scans, MRI, everything short of the surgery to place it) so that when the drug is approved and ready for use, we can move forward. There are still many unknowns but only to us, not to God. Please pray that we would be sensitive to His leading and make appropriate decisions, specifically Ben. The Lord showed me long ago that direction in this matter would come through Ben. I’m thankful for the peace the Lord has given me to leave it at that.
Joyanna had her physical therapy evaluation and has already been approved for sessions. She starts this next week. She passes by the “gym” each time for speech therapy and always wants to go in. When she could actually play with all the balls and equipment, she was very excited. The scheduling even worked out to where we will be able to have the sessions back to back on one day which always helps. The less days we have to be out at appointments is better. I’m glad we’ll start physical therapy right after this bout with sickness. She has moved so little in the last couple of days that she will really need to build her strength again.
Please keep all of us in your prayers as the kids recover--physically, emotionally, mentally, spiritually. Thanks!