Little Lovebirds

This is what Kai brought home from school today..It was everything that I could do to not bust up laughing!

Kai Kai update

A lot has happened over the past few months so here is the 60 second version. After a sleep study it was determined that Kai Kai needed to be on oxygen at night. This has made an impact on his energy and we are greatful to the doctors for making such a simple suggestion. Also, last week we were able to visit Shriners Hospital to have Kai Kai measured for his first wheelchair. The hope is that it will free him up at school so that he can have better days without being so wiped out. It is difficult for Jessica and I to swallow that he is progressing in this manner, but we do know that we are blessed and that Kai Kai is being watched over. The charity is something that we have hoped to do for a long time and look forward to being able to have an impact on those children who are struggling with rare neuromuscular disease. 2011 will be a year of change and we hope that all of you will join us in our journey!

Kai's Smiles

Well folks, it official. Kai's Smiles is now in business. In December we recieved our 503(1)c status from the IRS and now we are in the process of setting up the official website for the charity. We do have a facebook page under Kai's Smiles for Neuromuscular Disease, and we would love to have as many followers as possible. We also have Kai's Smiles wristbands available for a $1 donation plus shipping and handling. We hope to help as many people as possible with this charity, and are looking for suggestions for fundraising activities. Also, if you have someone you feel would be a good nominee for help please email either Jeremy or Jessica @ kais.smiles@gmail.com. Thank you for all of your support and here's to a great New Year!!!!

Short update

Just a quick update. We are meeting with a lawyer about the foundation tomorrow. I am so excited to get this rolling. Also soon anything to do with the foundation with be posted on a new site. As soon as I am finished getting it set up I will do another update and include details of Kai's recent Shriner's visit.

"Forget yourself and go to work!"

When I began updating Kai's blog again after an 8 month hiatus, I was determined to keep things as positive as possible. My hopes were that in doing this I could maybe, possibly forget what is really happening to my sweet Kai Kai. As I was wallowing in self pity the other night a quote from our former Prophet, President Gordon B. Hinckley etched itself into my mind. "Forget yourself and go to work!" A little background on this quote first. When President Hinckley was a young man he was serving a mission for our church in England. He felt as if he wasn't doing any good in being there. He shared these thoughts with his father in a letter who in turn replied, "Forget yourself and go to work!"
Over the last two days I have not been able to get this thought from my mind. Which can only mean one thing, this is what my Heavenly Father wants me to do.
So with that being said, Kai is not doing very well. He is tiring much more quickly, isn't able to clear his lungs on his own, is having a lot more pain, and I'm afraid to say that we will be speaking with Shriner's about getting him a real wheelchair. His dad and I knew that this would probably happen someday, but hoped with all our hearts that it wouldn't. But since we are here we are going to make the best of it, and hope that everyone knows that we don't think of this as the end of the world. Quite the opposite, actually. We are going to use this experience as a way to help others. Which is the best way for me to "forget myself and go to work". By doing this I know it will make this journey a lot more bearable. So enough babbling. Jeremy and I have decided to start a foundation that will benefit children with unknown neuromuscular diseases. We are in the process of meeting with lawyers and getting everything set up. When everything is in place I will post about fundraisers and how to nominate individuals. We are thinking of calling it "Kai's Smiles", because those smiles of his make everything better for us and we want everyone to benefit from those beautiful smiles. So please check back often for updates and information. Love you all and thanks for caring so much about our little boy!

A good laugh

Today reaffirmed the fact that I have no idea where Kai came from. This morning he and Ainsley were sitting at the table eating breakfast discussing who knows what. Eventually they were discussing cheese and where it comes from.When Ainsley ask him where, he told her cows. She then proceeded to ask him where cows come from and he replied, "Cow"lifornia.
Then as we were finishing dinner this evening the kids were talking about banana and zucchini bread. Kai ask me, "What do you get when you mix banana bread and zucchini bread? Bikini Bread!" Huh?! Once again where did this child come from?! There is never a dull moment with him around that's for sure.

I finally was able to get the pictures from Kai's special day at the racetrack in July. Thanks to Ray Cannefax and the Miller Motorsports Park for a great experience for us all. To say Kai was in heaven is an understatement. Below are a few pictures from his special day.

(sorry for the poor quality of the picture, my camera wouldn't cooperate.)


So what better day to start posting again than the first day of school?! My sweet Kai boy is getting so big and started first grade today. We had a wonderful summer spending lots of time in Wisconsin with Grandma and Grandpa Mike, having a special day at the racetrack, and just being together as a family. For the next couple of weeks the school is having a transitional period where the first grade gets out at 1:30. I think this will be good for Kai since he tires so easily. The problem is how he will do when this is over, but I am refusing to think about it tonight...Maybe tomorrow.

Now on to what has been happening the last eight months. We moved to be closer to work and it has been wonderful for everyone. Kai had a wonderful last five months of Kindergarten. His teacher was an angel and helped us to get him a 504 plan, which helped accomodate his physical needs. In May Kai Kai received his scooter and an adaptive stroller from Shriner's Hospital. He loves them and will be taking the scooter to school to help conserve his energy. Overall he seems to be holding steady physically, which we are greatful for. He is just a happy not so little boy.

July 10th was a very special day for Kai and our family. Miller Motor Sportspark gave Kai the opportunity to sit in his first racecar and spend time with the drivers, he was in Heaven! Not to mention his daddy, grandpa, and uncle. Pictures will be coming soon, I promise!