Time is flying!


Wow, it’s been a long time! We have been so busy being normal we haven’t had time to update 🙂 Being normal really is an amazing feeling, we were stuck in a crisis rut for so long that we are just enjoying every moment at this point.
It’s pretty amazing to not have to rush off to get an xray every time Isaac coughs, or race to the doctor for out of control fevers and a boy who can’t breathe.
Isaac spent his summer playing a ton, going to the pool a few times (he likes to break the rules!), hitting up Sesame Place and ended it with a quick trip to the beach. He’s rocking first grade and we’re surviving our first year of homework 🙁
Of course, he wouldn’t be Isaac without a curve ball or two. We recently discovered that the source of his unexplained leg pain is his previously diagnosed tethered spinal cord. The scary thing about tethered cords is that he can lose leg function and bowel/bladder control – once that happens it can’t be brought back.
We have consulted with quite a few members of team Isaac, and are going to go ahead and get that spinal cord untethered in the near future. The surgery is pretty simple, the recovery will require more work as it involves a day or two of laying flat – and that increases Isaac’s chances of pneumonia with his horrible reflux.
We think we have team who can get the job done and keep us here at home – very nice for all of us!
Until then we will keep riding bikes, doing homework and having tons of fun.

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