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:)

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.

"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.

Happy Happy Day!!!

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.

Give crayons. Adults are disturbingly impoverished of these magical dream sticks. ~Dr. SunWolf, professorsunwolf.com

Mondays are always busy! I don't have any scheduled hours at New Therapeutic Solutions so I cram everything else in that I can. Today I dropped the kids off at school at 8:30. I don't know if that is the right time or not, but its what happened. School times changed this year and has completely thrown me off schedule and now I can never remember the time they are actually supposed to be there. So it was just me and CJ for the day. We went to the bank (since it was closed Friday and Saturday due to the snow storm). Then we headed to the rec center. I got there good and early to feed him before dropping him off in the kids zone. I always feel so guilty about leaving him there right when its his feeding time. I don't think the girls really mind feeding him, but I worry that they will get busy with other kids and I feel kinda demanding for the services they provide. After my personal training client we went to the Celebration Station to see what we could find for Ike's birthday party. Yay!! They had army stuff! Ike will be so excited. Then we headed to CJ's accupuncture appointment. He always does so good there. He just lets her put those needles in. And it has been paying off too!! His hormone levels have almost tripled, so I have high hopes that we will not have to deal with them diminishing and having to add more meds to his list. My favorite part of the day--LUNCH!!I made a cheesey casadea (ok I have no idea how to spell that)but I put some ham in it and thought it was a hot ham and cheese sandwich even though I used a tortia. It looked like a ham and cheese sandwish. However, I added some of my newly made homemade salsa. The salsa was wonderful but I guess that means it was still just a casadea and not a true sandwich I guess. After feeding CJ we dropped some paper work off at Gillette Physical Therapy. Went to CJ's dietary appointment at the hospital. I have worked with Heidi in the past and she is great. I am so glad to have her help me with Cole's transition to regular foods. I am so scared to feed him anything that I don't really think I have tried to hard to get him used to things. After dietary we went to physical therapy. This Momma wants her baby sitting by his birthday! He worked really hard today. He is such a trooper. After that we went and picked the kids up from school and made a quick stop at the hockey store to see what Zoey is going to do for hockey this year. She is super excited. She chose volleyball last year over hockey and intensly missed it. Now off to all those never ending chores like supper and laundry and general cleaning--yay!

I loved autumn, the one season of the year that God seemed to have put there just for the beauty of it. ~Lee Maynard

I have decided to start blogging again. With so many things racin in my head right now, its either good to just things get things out or with any luck it will be a stepping stone to bigger better things. We have officially entered the fabulous month of October! This month has always been a full party month with Isaac's birthday being on the 16th. Normally people come and go this month as their schedule allows. But now we also have Chris leaving for the Mountains for a good 10 days to hunt elk with Wayne and Uncle Keith. CJ's birthday is on the 26th. We are having a baptism for CJ also on the 26th and after we get all that squared away we have halloween. The kids are doing fabulous! Isaac gets to go duck hunting this year. I guess he kinda missed most of it. We were in MN one weekend and got a blizzard the following weekend. Not sure if its closed right now or if big game season has just taken over. He is getting good grades and loves going to gate to get that little extra challenge. However, I think learning the viola will be challenging as well. Soccer season has just ended. He really likes to play and its fun to see him play hard and actually take the ball from an opponent. He prefers defence, but is a great scorer on offence. He will have a break from sports for a while. Basketball is next on our list but that doesn't start until January. Zoey just plain has an interest in everything right now! She is learning so fast. She just ended her soccer season also. They had to keep her on defence because even though she can also score she is the quickest one to the ball and gets it right outta there! This week I will check to see if I can still get her signed up for hockey. They are starting a new league this year for parents just like us (yeah!) It is a house team that competes here in town. So its more than learn to play but we don't have to travel out of town for games. She also is doing much better in school this year. I just wish she wasn't growing up so stinkin fast. She was my little girl for so long and now she likes to cook her own meals and read her books and she is even kind of learning the piano. Not official lessons yet,but she knows some of the songs in the book we have. Work is good. I only work part time so people are having a hard time getting scheduled with me. I am almost always full. Plus right now is a busy time anyway for me with sports being in season like college cross country, gillette hockey and high school football. Plus the college basketball teams are getting ready for their season. So I am always on the fence wondering if I should be working more but then not really having more time to give, especially this month with Chris being gone so much and so many things going on. I would really like to find some more on line work. I have been reading about some online successes and wondering if I could make it work too. I don't have the same passion for on line work as I do for athletic training and massage, but I have the drive to work from home. Anything where I can make my own schedule and work around my kids schedule is perfect work for me at the momtent!