Feeling Hot, hot, hot!

Summer has started off with the heat turned up on high. It's been really hot, over 90 degrees most days! Needless to say we have done more indoor activities than outdoor. Daniel doesn't handle the heat at all! He doesn't sweat, which makes it impossible to cool himself down. Add his new neck brace and it causes him to heat up faster. We will be heading to the mountains in about 3 weeks to Camp New Hope. We will hopefully see lower temps there. For now, we have been doing lots of bowling. Michael and his friend have joined a summer bowling league. It has been fun to watch them.

We had our appointment with our new doctor a couple weeks ago. Our appointment lasted over an hour. I had to give this new doc 13 years of medical highlights. I had to make sure he knew certain things about Daniel's medical issues, hospital visits, surgeries(almost 100 now), medical/doctor mishaps (which have caused devastating, life altering problems), and concerns. This poor guy was probably exhausted after our appointment. Overall it went pretty well. I didn't hold back about concerns we have with the new doctor change. We talked about what would happen in an emergency. Although we haven't had one in quite awhile, with our other doctor of 14 years, we knew what to expect in an emergency. Prayers were definitely answered, this appointment went very smoothly. Jeff and I walked out of there feeling much better than expected.

Our options now are major surgery of a spinal/neck fusion, surgery to remove scar tissue and still stay in the neck collar, or do nothing and stay in the neck collar. We are deciding to do the simpler surgery to remove scar tissue when the time comes that Daniel seems to not be comforted by pain meds. The neck fusion is too scary right now, too many complication risks and recovery risk. Since Daniel was born we decided to do whatever was necessary to keep him comfortable. As long as the surgery or procedure has long term affects that leave him more comfort than without having it we proceed. This can be very difficult at times. We rely on much prayer and the knowledge of the doctors to make these decisions. We will be meeting with the doctor again next week to decide about surgery. Daniel has been requiring more medicine for comfort and having difficulty swallowing. I think we will need to do surgery before the summer is over.

I hope you are enjoying your summer so far. We are enjoying the less hectic schedule. Stay hydrated and don't forget to wear sunscreen!