Wednesday, January 1, 2014

Happy 2014...

Happy 2014!

 I always love a new year. It brings with it a new page to continue to write the story of our lives. We brought in the new year rather quietly this year. Max's sister has the flu, which has meant a lot of extra measures to make sure Max does not get it.

 We were all pretty tired yesterday, so we went to bed before the clock struck midnight. But, before I said hello to 2014, I was able to do some reflecting on 2013, and for us it was a good year. Sure, there were ups and downs, but for Max is was a good year as far as his years go.

 Max has had an incredible year of health. Aside from a couple of little colds, and an emergency surgery after he injured himself by kicking his testes, he has been exceptionally well. We did get a revisit from the seizure monster this summer, and were not at all happy to see them return.

 Since the first of the year, he has put on 40 pounds. He is growing at such a rate that we were not able to keep on top of his medicine and keep up with his needs for equipment. We have started a new medication for the seizures and taking him slowly off of another. We’re seeing a completely different side of Max as a result. It’s been remarkable how alert and interactive he’s been these past couple of months since starting the new medicine. His seizures have also stopped, and we’re hopeful to not see them again anytime soon.

 Max finished up 3rd grade and started 4th grade this year in school. He was able to do extended school year this summer with his homebound teacher. They have formed a good working relationship and Max likes to work hard for her now in order to get his reward stickers each week. Max was able to start art therapy this year, and we have been delighted to see how he expresses himself artistically. He now has a full orchestra of musical instruments at his disposal after getting a piano for his milestone 10th birthday, which was celebrated by his family and friends all dressing up as Batman for him on Halloween.

 He has made a great group of friends in the neighborhood. The boys like to come and ride bikes with Max, and the girls like to call Max on the computer and read to him. His classmates make him cards and write him poems at every chance they get. Max now has nurses five nights a week, which means for the first time in 10 years we are finally sleeping!

 In all the excitement of the year, a big part of Max’s story was published on the new disease discovered in Max. He’s a superstar in the news but we’re most hopeful that it will mean finding more treatments for Max and the other boys the new disease has been found in. In 2014, we’re hoping to get Max on a journey outside of Colorado. We’re also hoping to get adaptations to our house finished to accommodate his quick growth. This is something we had planned to do over a few years, but are needing to put into high gear, as his growth has been far more than expected this year.

We are hopeful for 2014 to be a year of continued health and growth for Max, developmentally and physically.  A growing boy means a healthy boy...even if it is breaking our backs!  Whatever the year holds, we'll be sure to take you along for the ride.

Happy and Healthy 2014 from us all!
Last photo of 2013!

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