Jax had some rough nights for a few weeks in October and it about wiped me out. Especially with all I had to do running here and there and every where. I think most of his rough patch was due to belly pains and gas but I think we are over the hump and back on track finally. At one point I thought he could be teething and he may have been but the little fella still hasn't gotten any of his teeth in. I have been consistent in offering baby food daily now and he is doing better each time it seems. However, it is a very slow (and messy) process.
As far as development goes we are still at about the same place we were a month ago. There is still no mobility, no reaching for toys, not sitting unsupported but he does appear to be taking in more of his environment. I think he is paying more attention to what is going on around him. We are doing our best to get him up off the floor and more on the level of his peers so he can observe and be part of our daily lives. He really likes looking at red, black & white toys. Things with high contrast are easier for him to see I think.
Which brings me to his eye doctor appointment the end of October. This was our second visit to the eye doctor and we met with the head opthamologist. He was extremely nice, informative and compassionate. He actually held a prism up to my right eye so that I could actually get a glimpse of how Jax sees the world. It was like having double vision and the only way I could focus on anything was to close one eye at time. Which is what Jax is actually doing. His brain is unable to "tell" his eyes to come to the center so he compensates by using one eye at time. This is causing his eyes to turn outward (exotropia). In some cases glasses can be effective but not so in Jax's case. He would have to have such thick lenses that it would be impossible for him to keep them on. At this point our only option is strabismus surgery. It is a pretty common and minimally invasive surgery that Jax will be having Friday, November 16. The doctor will go in behind his eyes and tighten his muscles hoping that it will help bring them more to the center so he can have a chance at seeing the world correctly. We were told that he may have to undergo more than one surgery to correct it but if we don't do the surgery eventually his eyes would permanently turn out. If all goes well the surgery on each eye is 15-20 minutes and he can come home the same day given he does well with anesthesia.
He will be having another neurology visit this month. Those are always my favorite appointments to go to (insert sarcasm here). His seizure medicines were increased the last appointment and Jax seemed to be doing well on them but lately he appears to be exhibiting some more breakthrough seizures. But it is so difficult to determine what is a seizure in little ones. You wouldn't believe it unless you are familiar with seizures but even such small things as lip smacking or chewing can be signs of a seizure. It is so nerve wracking. I watch every little movement or non movement and it makes me down right paranoid most of the time. Usually when I go to these appointments and the doc asks if he has had any seizures I sarcastically laugh on the inside because I am like how the heck am I suppose to know what you say is a seizure. So my answers usually are probably so. I am thinking about taking some video footage and just showing them that so they can see for themselves what is going on.
Another big step we have taken in this journey was taking Jax to his first orthopedic clinic. The orthopedic doctor was also very nice. He said that Jax's muscles and hips appeared to be fairly loose with good movement. He didn't see any real problems at this point. During this visit we also met with a rep who measured Jax for his new kids cart (wheelchair/stroller). I was amazed at how far they have come in the development of this kind of equipment. It really does look like a stroller. Of course the seat and support systems are different but it doesn't look so institutional. We were even able to pick out which color we wanted. So as much as I hated even having to look at these things for my son at least I got to have input on how the thing was going to look. Also discussed getting small braces for his feet/ankles but we are not ready for those yet. Those will come when he is more weight bearing. Jax will be getting his new set of wheels in about four months. It takes a long time for everything to go through insurance and for it all to be ordered to meet his needs. The stroller should fit his needs for about 3 years. And I am hoping this will make him more comfortable when we are out in public.
I will try to post an update on the surgery as soon as I can. But I always like to leave you with some current photos of the little man. Oh, I almost forgot to mention that the first of November I finally got his hair cut. He definitely looks like a little man now! Such a cutie head.
Visit to the Pumpkin Farm
First time falling asleep in the high chair
My sweet angel in the morning. Look at that hair!
At cousin Jack's Ninjago Party
Enjoying riding in the big boy seat at Target
Finally the new do!
Thanks for stopping by!
Misty
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