Saturday, October 18, 2014

Even when freshly washed and relieved of all obvious confections, children tend to be sticky. ~Fran Lebowitz

I know there are always questions about CJ and everyone kinda wants to know what's going on. I have tried to write this post before but it gets long and blah, blah, blah. But I'll do my best. Diagnosis: Septo Optic Dysplasia also known as Optic Nerve Hypoplasia What is it: Septo Optic Dysplasia is a rare spectrum condition that affects pituitary gland function, small optic nerves and midline abnormalities. What does this mean for CJ: It is a spectrum condition meaning that he could have several issues or nearly none at all. His pituitary gland does not produce enough vasopressin to control his sodium levels. We have to monitor his sodium closely. At this time while his thyroid is borderline, the rest of his pituitary is functioning well. A portion of the pathway for his spinal fluid closed off (midline abnormality). This required a shunt to reroute the fluid from his head to his belly. And his optic nerves are small. This in and of itself does not tell us how much he will or will not be able to see. All we know at this point is that he can see, but it won't be the sense he relies on. As he gets bigger he will be able to tell us what he sees. CJ is still working against alot of things. He is not mobile yet. But he didn't get enough tummy time from being in the hospital so much, he is on medicine that may make him dizzy and with limited vision his comfort zone is very small. We get 80% of our information regarding our surroundings from vision so he may be missing quite a bit. He does very well in physical therapy and occupational therapy and responds very well if you talk to him and let him know what's going on. With his sodium issue, past episode of seizure he is still at a high risk for more seizures. At this time we are doing our best to put him on his best path, but we will just have to wait and see how things unfold. He's a happy, fun kid. He's eating well and growing. He's awesome! I hope this helps some, but don't be afraid to ask me more questions.

Monday, October 6, 2014

"You Make Me Smile All Over My Face"

I have started to blog again. I haven't really known what to blog about recently so I took some time off. However, October is always a busy month for us and we really have a lot going on right now. CJ has a few appointments this month. One appointment will be a pretty intense day but mostly we are just doing follow up appointments to make sure that nothing is changing and that we are on the right path. I know some of you always hope for new or big news with these appointments but really they are kinda boring. I hope to keep everyone updated here on this blog. I also know that with his condition being rare and whatnot I will also post more about what his condition is and what it means for him. So with appointments, birthdays, hunting, and visitors I will have plenty to blog about. Please stay tuned.