A lot has happened in the past five months since my last posting. I had to take a little break and take care of me for once. Since then, Christopher has been on the honor roll three times, became a Boy Scout, joined a swim team and has overcome his fear of heights. Boy Scouts has been our saving grace. Christopher was voted the assistant patrol leader and loves, loves, loves Boy Scouts. He has gained his confidence back and I see his spirit starting to return. He has showed so much strength during the past few years but he lost some of his dreams during the process. He now has his swagger back and its not just the perthes swagger this time. He recently went to Camp Cima which has a core team building sky bridge and zip line. Christopher was the first one to climb the two story high ladder and then upward on the telephone pole with metal rungs to the very top. He zipped over the river to the other side. This was a great accomplishment. I still can’t believe he did it!!! He goes camping once a month with the boy scouts and attends a weekly scout meeting with swim team every night until the end of June. It’s a busier schedule than when he was in sports.So-So News
We just returned from a visit from Dr. Standard in Baltimore and I have more questions than answers this time. I guess I knew things weren’t going to be great because I had a bad feeling in the pit of my stomach the night before our appointment. Let’s start with the positives – right hip is the same, no more braces and full activity. We’re happy about the right hip staying the same. It’s been a year since the surgery and bone has regrown. It still looks like a perthes hip but at least its round. Christopher was ecstatic about the braces. He has worn them for 14 months without complaining once. To let you know how he really felt – he is creating a rap song and compiling a list of a 101 ways to destroy them. I plan to videotape it and I promise I will post. My husband wants to get new braces made and make him wear them at night. We know those braces are a big part of why he has bone regrowth. The release to full activity scares us. Dr. Standard said its time to test the hip out but we are not testing medical software here. I immediately thought what is the worst thing that would happen; we would get the gizmo (aka external fixator).
The Not So Good News
The left hip is an entirely different story and makes my nose crinkle. It’s the questionable hip. It has grown back but it’s far from round but we knew it wouldn’t be perfect. It’s very flat and has an outside growth that will need to be addressed in the future. We’ll know in four to five years if he’ll need a head splitting osteseotomy which Dr. Standard says he is a perfect candidate for. The hip socket (or actbellum) has stretched out and Dr. S said he was surprised Christopher’s hip was still contained. If we ever lose containment or range of motion, then the gizmo (aka external fixator) will be needed. It just breaks my heart to think we’ll have to endure more surgeries and we won’t know the true outcome until his teens. I want this all to be over but I realize it will never really be over. I guess that is true of any disease. I hope we are alive the day they find the cause and cure for this debilitating condition.
Never Look Back
I came across Christopher’s first x-rays over the weekend and it just broke my heart. If we would have found Dr. Standard from the very beginning, we might have saved both hips. You can beat yourself up with the ‘what if’s’. I know it wasn’t supposed to happen and this is all in God’s timing. I know we are where we are supposed to be; I was just hoping to forget about it for a while. Perthes may have slowed Christopher down but it didn’t break him. He is a stronger, smarter young man because of it. He wants to be an pediatric orthopedic surgeon when he grows up. It will be interesting to see if that come to fruition in the future.
Team Perthes Awareness
Christopher has joined the Perthes Team Awareness again with the Save-the-Limb. He is sporting the new RIAO shirt for this year’s bike race in the photo above.