Saturday, December 6, 2014

Twinkle Twinkle Little Star Do You Know How Loved You Are

Well, again I haven't blogged in a while. Its been a whirlwind and I have been waiting for some results to get back so I would actually have something to report. So here's what we've been up to. On October 10th we were recommended to visit with the Next Step Assessment team in Lander, WY. Chris, CJ and I drove down on the 9th so we would be there by 7:45a.m. check in. We saw PT/OT types at 8am, nutrition at 9, low vision specialist at 10, opthomology at 11 and psychology at noon. It was intensive and thurough. We just recently got the results back. Its always interesting to see what tricks and tips others have to figure CJ out:) They felt his vision was best starting outward and going in toward his midline. He showed attention to bright shiny objects. We do need to be aware of things that make vision easier or more difficult. Such as avoiding glare, keeping his back to the window when we want him to use his vision (sunlight can be overwhelming), using contrast such as putting his toys on a black background etc. This is basically what the Anchor Center already told us. As he should have enough vision to get around but won't know yet how he will be able to navigate things like uneven surfaces, curbs and whatnot until he is older, more mobile and can tell us what he sees. Nutritionally he is doing well. Trying to add beans, wild game, eggs--you know, all the stuff he doesn't like:) He's doing well though, eating a decent variety AND he's been ON the growth chart now for a while which is pretty cool. On the 16th, of course, my Isaac turned 12. This was the first time I didn't give him a party. I did get to help pick out school treats, but that was about it. He was old enough to hunt elk so he was up in the mountains with Chris and friends to celebrate. He's getting so big and I'm not ready!! On the 17th of October Zoey, CJ and I drove down to Denver. It was fun to travel with Zoey. We got to eat at IHOP, shop at Target, stay in a hotel and even visit the mall before we left (where I introduced her to Cinnabon:)) However, the reason we were there was to see CJ's neurologist. It was the first time we seen this one as our regular neurologist moved to (of all places)Minnesota. It was relatively uneventful as we did not have any MRI's or EEGs, just a doc app. But my big hope was to get him off his seizure medicine. Tricky stuff since he's still kinda high risk. As it turns out, even though his brain has made great improvements (the hipsarhythmia is gone)they still need that rhythm to be gone for 2 years before they will start weening him off the medicine. Bummed:( So in June we are going to retest and see what we can do. Appointments are still spreading out further and further, which I think is good. On the 26th of October the guys got back from hunting their elk. It was a good trip! And just in time to celebrate CJ's second birthday. He's also getting so big and growing fast. He's still not mobile, but far from an infant!! I made him celebration birthday cake with farm animals on it surrounded with a fence of kitkats. The first weekend in November I went to Minnesota for a sports medicine conference at Mayo clinic. It was a wonderful experience. The kids didn't have school due to conferences, so I brought them with. But this was the second time I had been in Minnesota and I couldn't get C.J. in to see his endocrinologist. It was kinda frustrating. At some point soon he will need to get in, have his bloodwork done, have a hand xray (new, but to double check his growth)and to get his meds renewed. I really need to work out a better schedule with his docs so its less frustrating for all of us. Well that leaves us with Thanksgiving, Zoey's birthday, Christmas program and Christmas to go. I'll update as I can, but hoping to settle down again for a while:)

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.