“Life with God is not immunity from difficulties, but peace in difficulties.” – C.S. Lewis
The World According to Ryan –
How time flies.
When Ryan was born, time seemed to stop for a while. There was a time when I could tell you the exact number of surgeries that Ryan had when they were, and what they were for. I did not think that I would actually ever forget those things. But, I have lost count.
I do know that when he was 6-8 weeks old that he had surgery on his eye to remove the teratoma that was growing behind his eye. In the words of his surgeon – “it was a miracle”. She was able to make a really small incision and the teratoma just “flaked” away. He had to wear an eye patch for a while because the muscles had stretched so much in his eye, and his eye still does not close totally, but that seems to be the one surgery from which he has not had too many side effects.
When Ryan was two months old, was when the complications really began. A side effect of spina bifida can be Arnold Chiari Malformation. This normally presents as a person gets older and is rare to present in a child so young. However, it presented for Ryan. This condition is where some brain tissue extends down into the spinal canal. Of course, this was his first major surgery. His pediatric neurosurgeon at that time was WONDERFUL. He explained everything and made us all feel so much better, even though we knew there was the possibility that this surgery would have to be repeated again at a later date. (I am not a doctor, nor do I work in the medical field in any capacity, so please don’t quote me on any of Ryan’s medical issues). Feel free to “google” or ask your own physicians.) Ryan spent seven long weeks in the PICU (pediatric intensive care unit) at Vanderbilt Children’s Hospital. During that time, he also had surgery for a trach and a feeding tube, as one of the side effects of the Chiari malformation is that he lost the ability to swallow. We were told that the trach (and hence the ventilator to help him breathe) and the feeding tube were temporary. They may be, but he has had them for 15 years now.
He is still the happiest guy. And he is Awesome.
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