Tuesday, October 18, 2011

The rest of my life

In case you were thinking that all I do is sit around, staring at the phone, waiting for it to ring with news of appointments, let me tell you that I have a very full life, full of all sorts of adventures.

I swim. (Well, technically, in this photo, I sit in my wetsuit outside the pool, waiting for class to start.)

I hang out with the guys.

I charm the ladies.


And, despite what my mother may tell you, I nap.

Thursday, October 13, 2011

The first big test

Our hero's latest adventure involved a trip to the big hospital for an MRI. Since babies can't be counted on to stay still for the 30-minute test, they are sedated. H didn't love getting the IV in his hand, but didn't pout about it after it was in. Dig the modified Dixie cup that the nurse used to prevent H from sucking on his hand. Clever. We had a great team of nurses and techncians looking after us. H loves the ladies, and is a shameless flirt. I hope when he grows up he uses this power for purposes of good, not evil.

After the procedure was over, and the fog lifted, H was very interested in the assorted cords and cables draped all over his gurney. As a distraction, and to reward him for being so cooperative, he got a little prize from the toy bin. We picked this blue bracelet, because it most resembled the IV cords he was fascinated by.

I'm astonished by how quickly everything is moving. This whole awful thing will be over before I know it.

Wednesday, October 5, 2011

Appointments, appointments, appointments

Stuff is happening. H will go for his MRI on the 12th. He'll have a pre-op physical with his pediatrician on November 1. We will meet with the neurosurgeon and the plastic surgeon on November 10 to review the MRI, get the details of the procedure, and sign the consent forms. On Tuesday, November 15, H will have his surgery.

The beginning

We had an appointment with Dr. McDonald, a neurosurgeon, and Dr. Ross, a plastic surgeon, at the craniofacial clinic on September 29. As our pediatrician suspected, H does have something called metopic craniosynostosis, a premature fusing of the skull bones. In the next six weeks, he will have an MRI, and appointments with HSC genetics, an opthamologist, and a developmental pediatrician. He could have vision problems, because his form of craniosynostosis results in his eyes being too close together, hence the visit to the opthamologist. Because his potentially too-small skull can affect his brain development, the developmental pediatrician will make sure he's still hitting all his markers, and doing all the things babies of his age are supposed to be doing.

Unfortunately, because his case is moderate, not mild, it's not fixable with just a little helmet. The doctors have recommended H have surgery to correct his forehead shape. While it wasn't an easy decision to make, David and I have decided that they should go ahead with the surgery. According to Dr. McDonald, this will also happen in the next six weeks or so. We will have more appointments this month. I'll post updates as we learn more.