Well it's that time of year! It's not pumpkin spice and egg nog, but none the less part of the journey. Just a quick update after a few appointments. After five days of head aches Cole is finally pain free. We are watching him carefully and trying to increase his sleep and water intake. It's so hard to know when to be worried about a shunt malfunction, but we've been told if the pain doesn't go away that's probably a good sign we need to go to the ER. So until then we continue to stock medicine and hope they don't come back.
We had a fun Halloween - one of those holidays that gets better as the kids get older. They were very excited about choosing a mean face pumpkin and going trick-or-treating. It is always tough with lots of kids running up and down steps in the dark. Cole had a few falls, but he always got up, picked up his candy and kept going. And of course he stopped at every door to ask about the dog and comment on decorations. Such a sweet boy. The both chose to be bats this year - one Batman and one Batgirl. For those with a really good memory, you'll probably remember this costume (although much smaller) from when Reagan was three. At least we can say she is consistent with her taste! If you ask her why she loves it she will tell you it's not scratchy (like the witch costume) and it's comfortable and stretches.
We've had a busy week with appointments. We met with the kids' neurosurgeon, Dr. Myseros, and as expected, he said everything looks good and he will see us back in a year. He was happy to hear Reagan is still seizure free. And he was especially happy to hear Cole's eye surgery went well. He said he doesn't see a need for any follow up CT scans, but rather do them if we happen to have concern of a shunt scare. There was one surprise I wasn't expecting. Apparently some children with shunts have complications that result in the brain not growing correctly because an overactive shunt causes a vacuum effect which stunts the growth. Luckily Cole's head circumference is following the growth chart correctly and given his age we are probably out of the woods for any concern with craniosynostosis. I guess I'm happy I didn't know this was something we had to worry about...one less thing.We also had an appointment with the low vision specialist, Dr. Mojollal. And although I didn't have any specific expectations, the appointment was very informational. Unfortunately Cole had a hard time with the eye exam. He kept telling us he couldn't read the letters shown. It's frustrating because you want to encourage him but it's sometimes hard to tell if he is just being difficult. The end of the day, end of the week and he gets very tired.
I asked him about the contacts Dr. Hertle has suggested and he had a lot to share. First, he was able to explain the benefit of contacts in a very clear way. The most prominent benefit is for children who have congenital nystagmus. When children are born with nystagmus the brain is used to the way the eyes work and the shaking is not unexpected. When contacts are put on the eye, the eyelids immediately send biofeedback to the brain signaling that something is different and therefore developing a communication that was lost. Second involves the refraction. When light goes into the eye glass lens it refracts then refracts again before it gets to the eye. With contacts the light refracts only once since the contact is touching the eye ball. The third benefit of contacts has to do with the nearsightedness. Not everyone with nystagmus is nearsighted so it isn't a problem for everyone. But in order to fix the nearsightedness in the eye glass text must get smaller. And when it's smaller it's much harder for someone with nystagmus to see since everything is smeared all the time. The contact lens fixes this problem. Needless to say, I was very happy to hear about these benefits.
In addition to talking about contacts, we tried the monocular again. Unfortunately Cole still struggles to align the lens on his eye to have it work. So we've decided to table this for now. He did mention a new technology that he would like us to try. It is being marketed as a "removable visual prosthetic" called Nueyes. They are glasses with a built in camera with up to 12x magnification. But not just that. The glasses also have OCR capability, or optical character recognition. So if he was viewing a book it could read to him through an ear bud. They are also fully voice enabled and have internet capabilities. They also won an award at the Computer Electronics Show. We have really been struggling with the CCTV at school because Cole can't seem to write without having his hand blocking the view of the paper. We are hopeful he will continue to get better with more practice, but we are always looking at other options. And although we are excited about this opportunity and look forward to trying it, it comes with a very hefty price. The glasses are currently priced at over $6,000. We will investigate the possibility of the Department of the Blind and Visually Impaired supporting this purchase, but not sure whether they will consider it. We plan to at least go try them in the next few weeks when they arrive and see if he can benefit from them.Next up? Neurology next week...a little nervous about this one regarding the discussion of Reagan's medication levels. We will wait and see what he says!
