Spring Break 2022 … one we won’t forget

I remember talking to another Morquio Mommy last year who said, “I don’t know which is harder, the surgery & spica cast or physical therapy after the cast.”  I thought about that often over the past 6 weeks and thought there is no way it can get harder than this cast.  I was wrong.  Another Morquio Mom said to me once, “just when you get it figured out, the game changes.”  She was 100% right.

Needless to say, the past 3 days have been just plain hard.  Here’s a quick recap.  A few high points: the cast is off (!!), the x-rays looked perfect, Robert loves the pool so aqua therapy is mostly a positive experience, he is making progress with his anxiety and mobility, and we all love having Anna here with us (she is being so strong and a great big sister).  And the low points: Robert has a lot of anxiety when being picked up or having to move at all (que lots of tears from him and me), his body is very stiff and sore so PT is not a happy experience, and he’s told me he hates me multiple times (but his sweet heart has apologized at bedtime each night).

This too will pass, so trying to remember to take it one day at a time.  I’ve reminded Robert (and myself) that he will get back to walking and running, and this time it will be without pain.  We just have to be patient and it’s not going to be easy.

Thank you for Rooting for Robert and the continued love and prayers.  We will need all of them in the coming months.

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