Things are not good and they are not bad. We are just going through a stressful time. Michael has been studying very hard for his annual training and his ATP exam (FAA requirement). This test would be hard under any circumstance, but he is working and then took care of Aaron full time while I went home to work for four days. Bless his heart, he had the nurses quizzing him while Aaron got his infusion yesterday. His exam will be Thursday and Friday.
I will be going back to work full time in December. This is a huge source of stress for many reasons. Unfortunately, we do not qualify for any sort of assistance and we cannot afford for me to be out of work any longer. I do not mind working at all. However, we fear that this could jeapordize Aaron's health. We will be moving him back home. Last time we took Aaron home his health was compromised so severely that he spent most of the time inpatient and then had to be medically flighted back to Cincy.
We discovered that St Petersburg has the ability to do Aaron's photophoresis treatments. They have agreed to help and we are working out the details of that right now. This will be stressful trying to work full time and travel two hours (each way) to St Petersburg two to three times a week.
Finally, we will once again have to find a babysitter. This has been the most stressful part of being Aaron's mother. Finding someone who we trust to keep Aaron safe and someone who is flexible enough to work with our very irregular schedule is difficult.
It is still too soon to tell how Aaron is doing. He has gone down on the steroids a bit, but not enough to know if his new treatment is working. He does seem to have a little more energy. He walks again, but won't ride his trike yet.
I asked Aaron tonight if he said his prayers with daddy while I was gone. He said yes. I asked him what the prayer was. Aaron's response "Dear God, heal my bones. Amen".