We have been enjoying a little respite from the craziness "Christian's" inhibitor brings to our lives. His knee is doing much better, but is still swollen. I looked in his infusion log and the first knee bleed of the year started on January 5th....and it is still not healed.
His classroom is very far from the cafeteria, library and the front of the school, so he has been using his wheelchair (in the hallway). I hate depending on the wheelchair, but it sure has helped him. We are anxiously awaiting his new custom chair to arrive! It was a pretty penny, but I think it will be well worth the investment.
Our family is looking forward to Spring Break next week. We will be traveling to Denver for a follow up appointment at the HTC and are hoping to get a new plan of action for this inhibitor.
You just have to move a day at a time when you have the craziness of a chronic condition in the mix. It's so easy to get overwhelmed and find yourself worrying about what has not even happened. Be thankful for the calmness when it is present and enjoy the moments.
They just go by too fast.
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