I think I have a love/hate relationship with his shoes. I love them because he can walk, I hate them because it is a never ending cycle of adjustments. It's such a balancing act of getting enough height without compromising his knee. We went back to the Children's yesterday for x-rays after feeling a "bump" on Joseph's shin. He cried during the x-ray saying "all done mama all done". For a man of few words...he must have really meant it! Once we saw the dr. we were reassured that what I am feeling is Joseph's tibia bowing, which is normal for him. He quickly warmed up with all of the dr.'s and nurses telling him how cute he was. By the time we walked down the main hall of the hospital he thought he was a rock star. He was waving, laughing and smiling at EVERYONE we passed. I think he assumes everyone is there to see him.
On one of the Fibular Hemimelia parent blogs, I had the chance to read about the experiences of some adults who have FH. It was disheartening to read about the daily pain they live with in their joints. They struggle to find doctors who will treat their pain, instead they are encouraged to accept their "quality of life" as it is. It brings tears to my eyes to think about a life for Joseph that is filled with pain. The path to easing that impending pain is so confusing! We've done all of the research, talked to other parents, gotten second opinions...but still no luck on a decision to lengthen his leg. We're just going to give it more time. I pray that we can raise him to not feel sorry for himself, even if it hurts...life will have to go on.
It's easy to feel sorry for my baby (or toddler... I still think he's my baby boy), but it is certainly easier to feel thankful, we just have to count our blessings! And we can add to that list of blessings...
...a kindergartner that has finally adjusted to school...no more tears this week. All it took was a cute little girl, and now he can't wait to go to school;)
Happy 9th Birthday to Caitlyn!!!!
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