After the surgery life resumed to normal. It is amazing how quickly babies recover! We figured we were done with our craniosysnostis journey.
Over the years we have had a few eye and ear issues with Calvin which are more than likely related to his craniosysnostosis. These problems are not 100% unique to craniosynostosis but they are found in a very high incidence in the craniosynostosis kids compared to the regular population.
At age 3 we noticed Calvin using one eye to look at the TV or if he dropped a toy he would turn his head and use one eye to try and find it on the ground. The eye exam at the dr. revealed near perfect vision in one eye and pretty severe astigmatism in the other eye (20/80). We got glasses and started the patching WAR which lasted several years to come. IN hindsight I believe the patching was a major contributor to the defiance we bred in him. He learned from patching to fight, fight, fight. Our eye dr. told us there was NOTHING we could do to our child which would be worse than letting him lose vision in his eye so we tied his hands, taped his face, bribed, threatened and begged him to wear his patch over the years.
Around the same time -- age 3 -- Calvin was falling behind enough in speech that we started to seek out speech services for him. I didn't know at the time that the FIRST thing you should do when a child has speech problems is check the hearing to see if the problems developing speech are due to not being able to hear properly. So, it took us some time to figure out that he had mild/moderate hearing loss in both ears.
Both of these are not major problems. However, to have a child develop with moderate deficits in 2 senses does have an effect. We had always felt bad that our kid was 1/2 deaf and 1/2 blind until age 3 and struggled to get normal hearing 'til 1st grade when his first hearing test was "normal." His vision even with glasses was very week until about 2nd grade when he finally moved to 20/40 which I think is the best we will get even with glasses.
(For those unfamiliar with how corrected vision - with glasses - doesn't come to 20/20 I will tell you a tiny bit of what I know. When one eye is stronger than the other by such a significant margin the brain learns to "shut off" input from the weaker eye so that it can get a clear picture from the good eye. Because the brain is not using input from the bad eye, the part of the brain the receives input from the bad eye becomes weaker and less responsive. Eventually the brain atrophy is significant that even with glasses on, the input from the bad eye is basically ignored and quits developing. So, when the glasses come on, even though the eye is capable of seeing, the brain need more exercise to be ready to receive the vision. That is why you patch the good eye to strengthen the bad eye. If you don't patch the good eye the bad eye may never develop at all. Most success in patching comes at the younger ages -- before age 8).
So ... now fast forward a few years to 2nd grade and the present.
We have had a bunch of testing done over the last year. It started with some testing done at the school last spring. The school did some psychological and academic testing. We were looking for answers as to why Calvin is having so many behavior problems in school .. is it because he is having trouble learning and getting frustrated (learning disability), does he have any cognitive delays, does he have a "syndrome"? He ended up having no cognitive or learning disabilities, however we did see some weakness in the visual and auditory processing. And some major differences in his sensory processing behaviors. I had never realized until I was sitting in that meeting and we were discussing the results that all of the results of this testing was pointing to his history and could easily be understood knowing that he had spent most of his developmental time with major deficits hearing, speaking and seeing. To be honest, I was kind of blown away.
We moved forward with the medical side as well --
At first glance he is easily diagnosed with ADHD but it has never seemed like a perfect fit. After a year of not believing the diagnosis we decided to go ahead and trust the dr's opinion and try some ADHD medication. It was disastrous. He did not respond well to the medication. We continued looking for help feeling that a regular pediatrician and our psychiatrist were out of their league and that Calvin wasn't the typical ADHD kid as they had thought. However, I didn't really know where to turn. What kind of dr. should I go to? who could help us? Even though we had a bunch of testing done at the school they really only tell us what the kid qualify's for in terms of special education services. They don't direct you to help if needed outside the school setting or tell you what the testing means in real life.
Over the summer I met a mom with a kid on the autism spectrum who asked me if I was getting the help I needed for Calvin -- who was melting down at scout camp where she and I were both leaders. She directed me to get some testing done at the autism institute and then by a behavioral and developmental pediatrician. I was so grateful that she spoke up. Most people when they see Calvin on the floor crying or have a huge meltdown walk away. I was grateful that she approached me and asked "Do you know what is wrong with him?" (in a kind way). I have learned though my experience with a special needs kid how to better approach other families with special needs kids too. I guess that is what life experience is all about. Like I said before, I just wish I could have learned to be a kind and understanding person without having to suffer through hard times. Sadly, I am not one of those....I am one that has to be compelled to be humble.
We had to wait a long time for these appointments. We just finished up this testing process through both clinics. another cliffhanger... but at least we are up to the present time! :)
She puts the little strip of paper in with her note "in case you want to do something with it like fold it or make something with it."
One other thing about Clare that is special is that she likes to have sleepovers with me when Dave is on call. (dave has in house call once a month now). She really looks forwards to those nights!! "Daddy, when do you have to be on call again?" I guess it is a good way to have a positive association with his nights in the hospital! When Clare sleeps in my bed she likes to cuddle. I took a break when little Jo was a newborn but now that she is only waking up once a night I have resumed these fun girl sleepovers. Lex is starting to get old enough to be aware that this is going on so we might need to find a way to do something special with her every once in a while too.
