We wanted to update everyone on our time here in Dallas. As many of you know, we are currently on a week-long trip to have Sy's one year post-op appointment with the Neurosurgeon and Craniofacial surgeon that performed his craniosynestosis surgery one year ago. We have met with the anthropologist and media specialist that are following him as well.
It is amazing, seeing the same doctors and walking the halls of the same hospital, how fresh everything seems in our minds. We are reminded of what it felt like one year ago and realize just how blessed we are to be on the other side of things with our healthy, joyful, Frankensteinish-walking baby boy!
Last year, during the surgery, the doctors discovered that Silas had a chiari malformation. This is a condition whereby the brain begins to cork the spinal column. Of the 13 patients that had the same craniosynestosis, 67% were found to have this condition. The doctors hoped that, with the reshaping of his head, the brain would pop back into place (very technical term!) and alleviate the condition. We went back this year to have an MRI to confirm whether or not this had happened.
Unfortunately, that was not the case. The chiari is still present, although Silas does not exhibit any of the observable symptoms. That is part of the good news. The other part is that the chiari has not visibly grown since last year. The not so great news is that 50% of these children will be symptomatic and need additional surgery before they reach the age of five.
That means that we will need to keep an eye on things with additional MRI's of his head and spine. We will also need to have some sleep studies done to make sure that this is not affecting his nighttime breathing.
We are trying to keep positive with the positivies, although more than anything we just wanted to hear that Silas was completely healthy and finished with all of the medical issues. The last thing we want is for him to have to go through more poking, testing, or, worst case, another head or spine surgery. We pray and ask that each of you pray that he does not become symptomatic. As much as we have grown to appreciate these doctors for all the good they have done for Silas, we mostly would love to be rid of them!!
To those of you that have kept us in your prayers throughout this week, we can't thank you enough. We know that we have a bunch of you that keep us upheld in prayer and it means the world to us!
With Love,
J.L., Heidi, and Silas
