...as healing as a mommy kiss... ~Terri Guillemets

UFFDA! I am looking at this blog (as I really have not in quite some time) and I am looking at the title Soost Family Adventures. I wonder, have we actually been on any adventures lately? Why, yes we have!! We seem to be traveling often these days. Right after Christmas Zoey played hockey in Denver with Team Wyoming. She played great, but the overall score unfortunately, did not reflect that. We were able to travel to Denver as a whole family, which was great. As a Christmas treat we were able to take Ike and Zoey to their first NHL game, the Avalanch VS Wild. The Wild won of course! I was surprised to see the large amount of Minnesota fans there and they brought their Minnesota nice with them. They would come up to us as though they new us and start striking up random conversation. It was great! Next up on our list of travels was Mankato MN. My youngest brother got married and is expanding his family. It was a quick trip. We did not have much time we could take off from work, but we wanted to be there to celebrate with them both. The winter wedding was gorgeous. I got to spend some much needed time with my brothers, their significant others and Chris & Zoey even got to sneak in a basketball game coached by my sister in law and two of our nieces played. Then back on the road we went. Ike did not make the trip to MN this time. He found himself a job, flipping burgers at McDonald's. So proud of that kid, even if he purposely does not do things "My Way". More adventures await as we have more traveling for hockey, church, snowboarding and whatnot.

Your wings were ready, but my heart was not.

I don’t post on here as much as I should anymore. However, I noticed that the last post was from last spring after we went to a couple of funerals. This year has experienced much heartache and loss. It’s strange, I knew this year was going to bring about a LOT of change. I just didn’t didn’t realize the entire scope of it. My job was at a turning point. I didn’t know which way it would go as I had several options I wanted to pursue. We were working at a much quicker pace on the house. We still had a few setbacks, but we got new windows installed, added a small wall, taped, textured, painted the entire basement and got new carpet. Both boys got new beds. Positive change was being made. I took a job as head athletic trainer for Campbell County High School, which I felt was a great fit for me and I was (and am still) super excited about! CJ came to work with me on several occasions, just as Ike and Zoey did when they were younger. It made CJ feel big and added some excitement to the day to hang out with the high school kids. As the year comes to a close and I reflect on the year, the changes made were not the ones I anticipated. They were not happy or positive changes. I now have too much time on my hands with out any direction. When most children leave the nest it is an expected one, that can come with planning and expectations. I didn’t get that. So now my house is much cleaner, I can make hair appointments, get manicures and I have way too much time to think about “What now?”.

Sometimes, even after someone dies, you want to send them a postcard.

I have not blogged in such a long time! I have decided to try it again and see how it goes. I can tell you, that this past month of May has been a bit overwhelming and completely busy. We are getting around to finishing the basement. Before and after pics will be posted when the final touches are done. We added a wall, fixed some dry wall, took out the popcorn ceiling and retextured since it had been painted over too many times. The first week of May the Rec Center was closed for cleaning. So I took that time to get the laundry room, spare space and family room painted. It is coming along. Chris's Grandma Bessie passed away in Minnesota. The kids missed a few days of school. We drove to MN for the burrial. It was good to see family, but Chris and I no longer have any grandmothers. And grandmas are the best! We miss her. When we arrived home from our MN trip, I was told it would be my Grandpa's turn to go next. I was very much not ready, no one ever is. He passed 4 days after his 95th birthday. He is definately one of the best people I have ever known. He inspiried me in so many ways, and to hear how he inspired others as well was breath taking. I let the school know that my kids would be leaving again. This trip actually let them out for the summer nearly a week early. Isaac just finished 10th grade and will be a Junior next year. Zoey just finished 8th grade and junior high. She will join Isaac at Thunder Basin High School as a Freshman next year. Cole just finsihed Kindergarten at Hillcrest. Let's start this summer vacation with a road trip! We drove seperately because while we had things to take care of in Wyoming, we also didn't want to see how many times the whole family could drive back and fourth either. Grandpa's funeral was Thursday May 23, but we also already had Cole's Mayo appointment scheduled for Friday May 31. We were also already planning to celebrate our nieces grad parties. Chris and Isaac were the lucky ones to go back and forth. Zoey, Cole and I stayed in MN. It was a busy time for everyone, with end of school and graduations and whatnot. But we had a great trip. Cole's Mayo appointments were wonderful. Obviously, he does not like getting his labs and we always have some difficulty. But the labs came back great. He has been staying healthy and doing very well. Congrats to my nieces Autumn & Alli! They have just hit a major milestone, graduated high school and are joining the adult world. Very proud of both of them. Thank you to everyone for letting us to stay with you, for feeding us, for hugs and for all your prayers. After being gone for nearly a month, its my turn to join the adult world and get back to life and reorganizing for the summer.

Giant Overview!

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!!

"Write it on your heart that everyday is the best day in the year." Ralph Waldo Emerson

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!!

No Winter Is Too Cold When You Have Enough Love

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.

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:)