Remember when you were a kid and the word “Special” meant something good? You know “it’s your special day”. I have come to loathe the word special. I am tired of hearing “you need to see another specialist” –I don’t want Cameron to need anymore specialists!
But he does…Monday we are going to see an Orthopedic Surgeon at Children’s.
I had recently noticed some more severe assymetery in his body that I mentioned two weeks ago to our PT and we discussed the possible idea of seeing the Physiatrist at RIC. Then last week when we saw a PT at Children’s during our appointment for the STAR Scanner she pointed out some more potential issues.
Cameron has some rather noticeable assymetery with the creases on his back, and his left hip is abducted. The PT was going to send her report to our pediatrician for discussion at our next appointment on 12/20.
We ended up at the pediatrician this past Thursday evening, as I noticed a rather large swollen looking area on the back of Cameron’s head near the shunt tubing, so I freaked out. Turns out it was nothing, in fact it’s his muscle and it just appears more prominent b/c of the assymetery in Cameron’s head. But while we were there I mentioned the bit about the creases and hip. After a quick review they agreed and also pointed out that one of his legs is shorter than the other. And then came the words... “You’re going to see another specialist” I nearly crumbled inside.
For many reasons, but in large part because I worry what this means in terms of walking. I am trying to not get ahead of myself and we’ll know more tomorrow.
I guess you could say I am starting to hit that wall, it’s been over 6 months since Cameron was born and the intial shock of the many anomalies is starting to wear off. Now we’ve got to accept them and deal with all those emotions from the past that quite honestly I have shelved for the last 6 months, as I just try to survive and get Cameron to all his appointments and work on his therapies and manage all the insurance billing.
I am guessing some people are surprised by the tone of this post, I am just being honest about how this all feels. It hurts my heart more than I can ever explain and wears me down.
We will continue to do the very best for Cameron as he is a remarkable little guy. His happiness and smile makes every single step worth it. But that doesn’t mean we don’t have our bad days, our sad days and our mad days…
Here’s hoping tomorrow brings some better news.
XO
2 comments:
I think the tone of your email is perfect. Rory, I cannot imagine what you and Matt are going through. I pray for health everyday and good and better news. I find your honesty and tears and hardwork and sweat inspiring and hard to believe. It is a true test of a human beings endurance but also a testament of your will to live and your will to make certain your beautiful, handsome, smiley son is healthy, happy and safe. You continue to blow my mind. Love you guys. XX Kate.
Rory, you are truly amazing and each day I cannot comprehend your courage and strength. Cameron is so lucky to have such wonderful parents and I love the way you document all of the progress, trials, and tribulations because I know one day Cameron will get to read through it all and be bowled over by his incredible mom and dad. You are always in my thoughts, and don't think for a second that everyone is not in awe of all that you do! XOXO Lauren
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