…and One Step Back

At least that’s how it feels to me, today. Scott had a bone scan on Wednesday and I had the report faxed to me. I made the mistake of reading it… He does have bone lesions in the lumbar vertebrae (which are mild), femur and tibia (which are more serious). I was hoping and praying that the only lesions that he would have would be in his head. I am still not totally clear on what that means for him, long term. We have an appointment tomorrow with an orthopedic surgeon and will have more information then.

Today, we met with Scott’s endocrinologist, Dr. Naidu. She’s a very nice doctor and seems very genuinely concerned for Scott. She said she has only seen 3 cases of MAS in her career so far and they were all girls. Apparently, it is more common in girls, but it is a very rare syndrome and not much is known about it. So, she said that she is going to have to seek information/assistance from others with experience with MAS. I was glad that she was forthright and told us that.

We had been sent an email from a lady whose son has MAS and she directed us to a doctor in Maryland and sent a copy of an article that he had written. We gave the article to Dr. Naidu and she said that she will contact him and that we should do so as well. She has ordered several more tests for Scott and we still have more appointments scheduled for the next couple of weeks. So we are still waiting on lots of information and then will try and decide what will be our next steps.

Please keep praying for:
Miraculous recovery
The right doctors, test & treatments for Scott and that the information that they get is correct.
Safety for Scott
Comfort of all of us
Strength and wisdom for Chuck and I

Thank you again for your prayers! We are truly feeling them!