On July 27th, Kaylie will be two years post op…. I can't believe its been two years. The first year after surgery I felt like I was on constant guard, and was the biggest mama bear. I felt like our life was controlled by everything Chiari. What a difference two years makes! I have learned to let go... And move on with our life! Don't get me wrong, I still worry.. What mom wouldn't? But Kaylie has also changed in these past two years. She is more mature, and well aware of what her limits are. Our family is still very much apart of Chiari awareness, but we are moving forward too. Kaylie played softball this spring…there was always a parent at practice and games, so we were there to watch over her safety. She was fine! We even allowed her this year to go ice skating at a birthday party this year. She did great! She wore her bike helmet and had a walker like object to hold on to. Needless to say, we know her limits, and so does Kaylie, which I think is great… as she gets older she needs to know what she can and can't do. As for her scar ….. it looks just the same as it did at her 1 year post op…. maybe even a little fainter. I kind of think as she gets older it will said more & more. The only time I really notice it, is when she is swimming, and her hair naturally parts down that scar line. She does still have symptoms… headaches are her biggest issue. I continue to log her symptoms… and they are far from how they use to be. August 5th, she will have a brain MRI. This is general post op care. We will get the images, then send them to Dr. Rekate to review. In all… things are still good.
We went to Disney World for vacation. Had a great time, very Thankful to Ben's brother for inviting us to enjoy their timeshare. As for Kaylie & rides there…. I did have a "do not ride" list…. basically I went off of Disney's health advisory list. How to do this… go to Disney World site, click on "Parks & Tickets" choose a park, i.e.: Magic Kingdom, scroll down and click on "Attractions". Once the new page pops up… at the top of the page you will see different things you can check to narrow your search. Go over to the very right side, where it says, "Accessibility & Advisories"…click on "more options" and at the bottom of that list under "Physical Considerations", there will be a link called "Health Advisory". Once you click on that, it will show you all the rides that have a "Health Advisory" on them. Their "Health Advisory" says: "WARNING! For safety, you should be in good health and free from high blood pressure, heart, back or neck problems, motion sickness, or other conditions that could be aggravated by this adventure. Expectant mothers should not ride."
Most are roller coaster like rides… there were a few that I did let her ride that were on the lists…. example the Tomorrowland Speedway… She drove, but I controlled the gas & break, also the Buzz Lightyear's space ranger spin… its a self turning riding by controller, and she didn't do it that much. There was one ride at Magic Kingdom that does not have the health advisory, and a part of me thinks it should. Was the new Seven Dwarf Mine Train. This is a new type of roller coaster ride… smooth track kind, the turns, and sharpness of the ride is suppose to be smoother. We rode it… once. My husband agreed it was fine…. I still think the ride possibly should have the advisory on it. She was fine afterwards, no issues later that day/night, wanted to ride it again… but once was all we did.
I think the best advice I can give on rides is that you as a parent ride it first… then if you feel like its not safe skip it. We have been to Disney a few times, so I knew what rides were "OK" and the ones I was going to say "No" too. We talked about them to her before the trip, so there would be no issues at the parks. I truly think that's the best thing one can do is plan it out for your child, and explain why you are not allowing them to ride. Prepare, if your with other family members that are riding those rides, what to do while waiting. Example… I didn't tell Abby no to rides, just because of Kaylie & Mason… while Ben, Abby & the rest of our family went on Space Mountain… Kaylie, Mason & I went on a different ride close by. It worked out great. Also, two rides in Epcot have waiting areas for people that are not riding. Mission Space… go through the store, and through the "exit" part for riders, and you come to a game station and small child's playground. Kay & Mason had a blast in there. Then at Test Track… same park, Epcot…. also go through store, and exit for ride… and there is an area where the kids can build a car digitally on a computer, and they have about 8 real cars "for sale" but kids can get in them, and pretend they are driving them.
Needless to say, we had a great time… and Disney can be done with this condition!
In other news…. the past few months I have been thinking about going back to school. I don't want to go into nursing anymore, but still wanted something in the medical field, something better for Ben's work schedule, and where I could be a little flexible if needed for the kids. I have decided to go into Diagnostic Medical Sonography. I have 3 courses to finish … one being the Human Anatomy & Physiology class I dropped when Kay was diagnosed, then I can apply for the program. Its a 15 month program. I start this fall with two of the classes, then one class in the Spring, and will be applying for the Fall '15 program. I'm excited, and of course nervous…. but I think this will be great.
Other than that… I am still preparing for the walk in Sept. Really excited about it, should be a lot of fun!! If you would like to register for the walk, or sponsor a walker you can go here.
Thursday, July 24, 2014
Two Years and STRONG!
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