Time to start posting again...

I was able to take a good hiatus from posting here, as we had paid off the bills from the second cranio surgery and had purchased the hearing aids. Life was humming along with speech therapy at school, leaving us little need to think about that service. The only real upheavals involved routine checks with the ENT, audiologist, and ophthalmologist. I started noticing openings a while back, though. A CT scan and visits with the surgeons in Orlando confirmed what I was noticing and fearing. Then, a visit to the surgeon in Tampa, today, confirmed that fear. Here is what I put on Facebook.
Simon does need the openings near his temples to be covered. The plan is to go in, harvest bone, and do a split bone graft. If not enough bone can be harvested, then a titanium mesh with bone may be used. If we leave it alone, the openings, especially the right one, will likely get bigger. Also, it is a safety concern. If we have the same craniofacial surgeon, then we will probably end up at All Children's Hospital in St. Petersburg. We should be able to get a room in the Ronald McDonald House so as to be there a day or two early for pre-op testing. He really needs six weeks out of school to get past the danger zone of contracting any post-op infection. I am taking the second summer term off, and Chris and Simon will already be on break. So, that works out okay. The neurosurgeon does the bone harvest, and the craniofacial surgeon puts it all together. So, I am thinking that we will be taking the trip to St. Petersburg. That will be eerie. It will be 35 years since I had my cranio surgery at that same hospital!