I meant to update long before now, really I did, but due to the crazy holiday season it hasn't happened until now. I know some have been waiting to hear how our trip to Shriners went. Please forgive me for waiting so long.
To start with the most anticipated news, Shriners was AWESOME!!! While there we were able to meet with two specialists, a neurologist and an orthopedic specialist. Jeremy and I were very impressed with both doctors and their genuine concern for Kai and his future. While there they did xrays of his spine legs and feet. Overall everything looked good except that his bones don't look as dense as they should. So on January 12th we are heading to the U of U for a dexa scan to see how bad it is. If this test comes back abnormal they will start Kai on bisphosphinates. Which is what they give older women with osteoporosis. We are hoping that maybe this will help alleviate his leg pain and then we can take him off of his other medications.
The best part of the whole visit was being reminded that we are not financially responsible for anything that Kai has done in that hospital! Whew! That really helps to boost morale, especially when wheelchairs can run thousands of dollars! Speaking of wheelchairs, Kai has an appointment in March to be fitted for his first chair. I have mixed emotions about this, but overall I am excited about the freedom it will give him in the long run. We should get it just in time for summer vacation, which will work out perfectly. Well I'm sure I could go on and on but I won't. Just know that it was a wonderful experience and we are happy with the care Kai will be receiving.
We have had a wonderful holiday season with the best day being today. I love seeing my kids faces when they see what Santa has brought them. We have had a great day playing, watching movies, and just spending time together as a family. I promise to update again soon about everything else that is going on, but for now I'm going to let Ainsley do my make up. Merry Christmas!!!
