Monday, August 10, 2015
So I am not great at keeping up with this blog! Sorry:( We finally made it to Cole's Mayo appointments in January. We made it family trip this time. He had x-rays of his hand and knee and blood work. Things did not go as we had hoped. With Optic Nerve Hypoplasia things can change at any time. While most kids have reduced hormone function, CJ's at this time was off the charts. His x-ray showed that of a four or five year old. We were unable to have an MRI while we were in MN, so we went back to Gillette and had our MRI done here. Because this was unusual (but not weird or unheard of), he wanted to double check and make sure that CJ did not have any tumors or strange brain growths contributing to his high hormone levels. The MRI came back fabulous and we got him on some new super expensive medicine. June was a pretty big month for us. We got to have some family over. It was a short stay, but we did grill, have a fire, play some games, glow sticks, hang out and camp in the living room! Best spot in the house, right Amy:) Half the crew stopped in again on their way back to Minnesota after visiting Yellowstone. However, most of us were in Minnesota. My nephew graduated high school and we (me, Ike, Zoey & CJ) went back for the party. While we were back we did two full days at Mayo for CJ. He had an EEG, fasting blood work, x-rays, OT eval and appointments with neurology and endocrinology. This time went much better. He is still (and probably always will be) at high risk for seizure. However, the one episode he had has been resolved with his shunt, so the neurologist agreed to take him off of his seizure medicine. Its a powerful drug so we are slowly weening him off. Not much more to go! We went over his MRI and it was beautiful:) He is still improving after having the shunt put in. The enlarged ventricles are still shrinking to normal size and the brain is growing properly. His blood work all came back normal, which is amazingly super. So while that news seems small when you write it, it means nothing new has arisen and the medicine we have him on is working! So we partied the rest of the weekend with Kyle. (Even though we accidentally missed county shoot). When we got back from Minnesota the kids got ready for 4-H camp. Isaac and Zoey both went this time. They have such a blast canoeing, shooting, crafts, dance, counselor pranks, creating t-shirts and campfires. When they got back from that it was laundry time as we got ready for another trip to MN!!
Thursday, January 1, 2015
A new year and a clean page. This year has been a good one. We have all been working hard and I foresee many positive changes in our future. In reflection of this year there was only 1 ER visit. Yup. Just one all year and 0 hospital stays. That alone, in my book, is a successful year! The kids are growing by leaps and bounds. Its hard to keep any of them in their clothes for long. I scrunch CJ into his snug footies while Isaac and Zoey wear short pants:) We have survived soccer, basketball, baseball, softball and hunting seasons this year. Isaac becoming an official big game hunter was definatly a high light! As for me, with healthy kiddos, I have been able to work regularly and focus on my continuing education. I wanted to make sure that nothing lapsed this year as it had during our frequent travels to Denver. Not only was everything done early, but I also got a few more letters after my name (Corrective Exercise Specialist). I also made the very positive decision to be self employed again. This has created so much less stress in my life, that I don't think I could ever go back to being a regular employee again. I have been able to reevaluate and simplify some of my business practices, which has been keeping me busy:) In addition to providing massage and personal training here in Gillette, I still plan on having a great web presence on the internet as well. Its a slow go as I am still in the process of finding my voice, my true nitch and overcoming a few fears. But, at this point in my life my kids have to come first. Always. And if I can have a mobile career that I can effectively do where ever I am, that to me is a score. I have considered this for a while, but now that I spend so much time out of state its almost a necessity! This upcoming year is going to be big!I require a lot of forward motion for this family. I have another certification I want to get ASAP. Isaac will be starting junior high this fall and Zoey will be ready for Mallo Camp. So don't be afraid to support Soost Outdoor Fit Biz at www.soost.biz. It doesn't matter if you need a full program, just some snacks or you refer me to a friend. It all helps:) By the way, if you visit the website, please give me some feed back! Its hard for me to know whats helpful/interesting vs what's not. HAPPY NEW YEAR!!
I would really like to be posting about CJ's Mayo visit but once again it did not happen. We are supposed to see the endocrinologist every six months to monitor for proper growth and make sure that all of his hormones are functioning the way that they should. But Mayo was too busy to get him in the last two times I was in MN so I had scheduled an appointment for December. They scheduled him in for blood work and an x-ray. However, there was very poor weather between here and Minnesota. We had a snow advisory, Minnesota had fog and there was ice all the way in between! Hopefully we will get to go in January, but of course that will be about a year since his last appointment! He is still progressing though. His sitting is doing quite well. Not independent for long periods of time but little to no support. He drinks well from a straw. I have been taking him swimming lately and he completely loves that! In the mean time Zoey has turned 10! Yup. Double didgets. We had her party at the roller rink. We had a mustache/undercover detective theme. It was cute and fun:) We had the mustaches and hats to match. Hopefully more news soon! But who knows.
Saturday, December 6, 2014
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
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.
Sunday, October 20, 2013
Isaac is growing up so fast. It is remarkable and wonderful and crazy and a bit scary. He's not a teenager yet, but its going to come faster than I will be ready for. This year he really wanted an army birthday party. So I made camo cupcakes with army guys on top. We had his party yesterday so we would have all afternoon to play. We started with pizza. We had (including Ike) 6 fifth graders, and 2 third graders. We played all kinds of games and the kids had fun. Towards the end things got a little intense so we ended by having them all sit at the table and we played spoons. I found it interesting (and good) that they liked it better when I played with them. I will take it while I can get it! I am so proud of him. He is so amazing! Happy Birthday Ike:) In the mean time Chris, his Dad and his uncle left last week to hang out in the Big Horns and hunt Elk. Chris got one opening day and was able to pack it out the next day. He said that it was pretty cold and snowey up there. At least a foot or more deep so it limited where they could hunt. I really haven't heard much from him, but he will be back tomorrow. Pround of him too:) My month isn't slowing down just yet. We still have CJ's first birthday and his baptism on the same day. So trying to get everything coordinated for that. I am so exctied for this weekend. A celebration that we all made it to his birthday and finally getting baptized. This is not the first time we have had this scheduled so pray that nothing goes wrong and no surprise trips this time.