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!!