Disappointed

Yesterday, we had Grayson’s 4 month follow up from his SPML surgery he had in January. At first, the results of that surgery were nothing short of miraculous. Our sweet boy’s legs had been so tight and stiff and after surgery, his legs were loose, and changing him and even picking him up were SO much easier.

However, over the past month or two, I have been noticing G’s legs have stiffened significantly since surgery. They aren’t quite back to where they were, but holding him and changing him is difficult and strenuous again. And as you can see in the picture, his hips continue to shift in this awkward position, making it look like one leg is longer than the other.

The orthopedic surgeon agreed that Grayson is tighter than he would hope just 4 months post surgery- the results are supposed to last 1-7 years. Unfortunately, the only option to get those results back is more surgery, which at this point we are not willing to put Grayson through. I asked if more therapy, or exercises at home would help, and he said in this case, no. G’s body just wants to tighten, and it will find a way.

I am so disappointed that the results of this procedure, which made such an enormous positive impact at first, aren’t lasting. It’s frustrating and is just another reminder that dealing with this disease is fighting a steep uphill battle- we try everything we can, but there are no guarantees anything will be successful long term.

On a positive note, I got a phone call yesterday afternoon that Grayson’s wheelchair and stander will be delivered Thursday! I’m so excited to see him in his new ride!

Oh, and while I took G to his appointment, my friend K was so sweet to offer to watch Charlotte. K is one of my Mito mom friends, and her daughter also has a feeding tube. I knew Charlotte would be in Heaven because they have as many medical supplies at their house as we do. I almost died from the cute of these pictures she posted while we were gone- my little nurse, taking care of a tubie baby. I MUST get Charlotte one of her own!

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3 thoughts on “Disappointed

  1. How frustrating that the results of the surgery were not as lasting as you'd been led to believe. Poor Grayson. He (and you) so deserve a break. I hope the stiffening slows in the coming months.

  2. I am so sorry to hear that the news wasn't what you were hoping for. I pray and will continue to pray for Grayson and your family. Sending big hugs your way.

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