July 31st

Today, after much wrestling with the scheduling department at Cincinnati Children's, we were told we needed to wait SIX WEEKS to see the surgeon assigned to James' case. After calling for an explanation, we were given an appointment with Dr.M, a neurosurgeon, next Wednesday. We should find out what the surgery will involve, and when it will be scheduled at that time. Right now, James has no swelling, bleeding or pressure in his brain. Hopefully we can get everything in the right place before any of that happens. Also, after further research, it seems that James' congestion may be related to the cranio issues after all. The metopic suture, when it is closed, can cause narrow nasal passageways. However, we may need to also see an ENT to confirm what the problem is exactly. We will post again when we have more information, August 5th.

July 29th

Today was Jim's first CT scan. The experience was not pleasant. Due to his cronic congestion and reflux, our 7 1/2 month old angel needed to go under full anesthesia. The anesthesiologist would not allow us in the room, so they took our sweet baby away while he was still awake, and he was awake and screaming by the time we got back into recovery. They had a difficult time with his small airway, so his throat was very sore and he immediately threw up blood all over mom. They told us not to expect results of the scan for 24 hours. On the way home, we called his doc, and they said the scan results were already in, and waiting for doctor review. About 45 minutes later, we got a call from the doc, who said that the sagittal and metopic sutures are both closed. He had already faxed a request for a neurosurgeon consult, and expected that we would be doing surgery sooner rather than later.

As we've been waiting, we're finding as many resources as we can. We have found that Cincinnati Children's Hospital is the best place in the world for James to have his surgery. How blessed we are that we live so close to this awesome facility! Meanwhile, friends and family have already responded with offers of prayer, dinner, company, babysitting, and house cleaning as we need it. We are feeling loved and supported, but still nervous for our little boy.

July 24th

This is the day that I took my baby in for his first check up with our new doc. He has been congested since birth and we were getting frustrated with his discomfort and problems eating. The doctor couldn't help much with the congestion, but immediately noticed the shape of James' head and suggested an x ray. This was the first day I'd ever heard the word 'craniosynostosis.'

We took James for his x ray and by the next day we were told his sagittal suture was probably closed, and that he would need a CT scan at Children's Hospital. After Google-ing cranio topics, I was sick. James' head bulges out in the back, just like the pictures posted on hospital websites for sagittal synostosis. He also had almost no soft spot, and a ridge along the top and back of his head. His first pediatric group had told us not to worry about any of it, but it not looked like he was probably going to need neurosurgery. We immediately sent out prayer requests to our dear friends and family.