Our Ross journey has begun. Broc will be getting an Epogen injection twice a week to help build up his Hemoglobin. They are rather painful but he handles them like a champ. As he cannot do food things for a reward and we have plenty of toys we decided to give him 25c for every shot. There are always things the boys want to save for. This has made our already busy month more busy but we have to do everything we can to prepare his body for the major heart surgery it will undergo in just under 4 weeks.
He did see a shoulder specialist last week to rule out anything major as he has been having a lot of shoulder pain with his last 2 illnesses. We found out that he does have some inflammation there so we think when he gets these febrile illnesses it's causing inflammation in his body too. He is seeing a knee specialist too this week for his constant ongoing knee pain. Unfortunately with a person as complicated as Broc is you cannot ignore pain that comes and goes and is sometimes debilitating for him.
We have a really cool zoo trip planned before Broc goes into hibernation for his heart surgery. We are trying to fit in as many things in before his surgery. He has made a list and I'm hoping to accomplish 4 of them this week.
We got the genetic test results back and they were so anti climactic as his Dr called them. They revealed nothing new expect the fact that the original mutation (.LTBP4) gene now has been down graded as having no significance for Broc at all and it was just a finding.
We really pray that the muscle and skin biopsy will reveal something for us. Results for the muscle biopsy will be around the week of heart surgery and the results for the skin biopsy will be at the end of September.
The next couple weeks and months will be very stressful and emotional for us all. Please keep us all in your prayers.
Broc did a Bible reading last week. His reading has improved so much since his first reading when he was 8yrs old. He doesn't need a step stool either to use the podium.
We were not able to attend the convention as a family this year. I was able to only attend Saturday. It was so encouraging and faith strengthening. I'm really looking forward to watching the rest of it on line. Its the little things that count. I never take anything for granted anymore.
Thank you for all your love and prayers.
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