The First of Many

We started out on our first day at the hospital rather well. The boys were happy. Something new for them to do and new toys to play with. A tech came in to do the boys’ EKG and electrocardiograms. Both come back with normal results. Wow, this might not be so bad after all. Hunter’s MRI was for this day, June 14. This was the first of many times I would watch my boys be put to sleep by anesthesiology. Not a good experience for the first time. As he was going to sleep he seemed to choke and gurgle, but I was reassured that it was normal. Later that evening the team of neurosurgeons came in to show is Hunter’s MRI results. I was horrified. How could his spinal cord be that pinched and he still be doing what he was doing. That is when we were told that he was going to need surgery. I already knew that if Hunter needed it then Jack would to. The next day was Jack’s turn for the MRI. Pulmonary also came in to do a consult on the boys lungs. Lungs looked good. Later that afternoon we were told that Jack was also going to need the surgery, but I already knew that. We also got to meet the boys genetic doctor. To the best of his knowledge the boys seemed to have MPS IV. Though he did warn us that some times to take a road and with out even knowing it your have forked in a different direction. Before the second day came to a close we knew Hunter was slated for surgery on Friday the 18 and Jack would be sometime early the following week.


About Alison

Mother of twin boys whom both have morquio syndrome
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