We are enjoying our first "normal" feeling summer in two years. Abby is doing great. Her physical strength is slowly improving with the help of physical therapy twice a week and exercising at home daily. We wanted to give you all a quick update since it's been so long. Mark is working hard, his consulting business is doing really well. Anna and Lily are excited to be moving into less school over the summer. Lily started a choir camp this week. The Schreibers are here visiting us currently and we are enjoying some non-hospital room visiting time with them. All is going well here at our house and for that we are very grateful! Abby has been going down to the clinic weekly. We are trying out a once every three week visit as of this past visit. It felt great to have Friday come and go and not have to take the 4-5 hour trip down to Denver. The plan for Abby is to continue on the steroid therapy for the muscle GVHD. We had hoped to be off the steroids sooner but the doctors would like to wait until November. Her dose has been slowly lowered and she is on what is considered maintenance right now. Since the consequences of a relapse are not something we want to even chance, and since all the data (though it is limited since muscle GVHD is so rare) says that 6 months on a maintenance steroid dose is the best bet to avoid it, we will most likely go that route. Her immunity continues to be pretty low because of the steroids but she has avoided any sickness which is great. We were able to take a short trip to San Diego and stay on the beach for a family vacation. We had a wonderful time! Hope you all are enjoying your summers.
It is really nice to hear that abby and the rest are doing well .. and the therapies are working for you guys . just hang in there and i am sure you will get what you want ..
Thanks for post:
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