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.