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!

Where the boat leaves from.

Well I just spent the last 30 minutes doing an awesome, long overdue post. That I lost while sitting here in the airport. Jeremy and I are headed to the Bahamas, and I promise to redo that long overdue post when we get home. So until then I'm headed to where the boat leaves from!!!

While I have a few minutes of quiet before dinner I thought I would give a little update. First of all, I want to wish my sweet,crazy Brady a happy birthday. I can't believe my New Years baby is 4 years old today. My babies are growing up.(sniff sniff)

We have had a very eventful week to end 2009 and it will continue in to 2010. We spent a little time at Shriner's this week to get Kai fitted for his orthotics. I sure love the feeling in that hospital. It is different from any other childrens hospital I have been in. Everyone there loves their job and the patients.

The biggest news is that we will be moving next Saturday to Provo. We have found a very nice house that is much less expensive than the one we are currently living in. While we are sad to not be just two minutes from Grandma and Grandpa, we know that it will be a good thing and make us rely more on one another.
A bonus to moving into the new house is we will be adding a new member to our family named Spur. He is a 4 year old Weimaraner and the kids absolutely adore him, especially Kai. After we are settled into the new house I will update with pictures and an exciting announcement. HAPPY NEW YEAR!!

Merry Christmas!!

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!!!

Shriner's Hospital Tomorrow. Stay Tuned.....

I once again have been a huge slacker and frankly just not in the mood to update. The past month has been pretty boring around here. We kept Kai home from school for awhile until is swine flu vaccine was active. I am pretty sure that I will have a permanent knot in my stomach the entire winter. We were so lucky and blessed last year that the worst illness Kai got was strep throat. I am really worried we won't be so lucky this year. So after consulting with nurse Grandma we have decided to keep him home from everything but school until flu season is over. If things continue to get worse at school we will keep him home from there also.

Unfortunately we had to reschedule his appointment at Shriner's hospital, due to illness. We are now scheduled for December 16th and are looking forward to meeting with the specialists there. Maybe they can shed some light on why my 5 year old is having migraines.

We had a pretty low key Halloween due to my recent germaphobic tendencies, and are really looking forward to the holiday season. I will post pictures soon from our trick or treating adventures, or lack there of.

Somewhat toothless wonder

My brain is not wanting to think right now, so I am just going to post a few pictures and you can guess what happened before Kai went to bed tonight.

Five minutes BEFORE bedtime





Five minutes after bedtime


Two teeth in one night! My baby is getting so big, I hate it!! Oops, guess no need for guessing, oh well. Have a good night and I will try to update more about our week tomorrow.

Bad Mood

I have been in a pretty bad mood the last week or so which is my excuse for not updating in so long. However, since I have a saint for a mother-in-law, my mood has changed for the better. So hopefully I can have a better attitude now and blog more frequently.
Thankfully the last couple of weeks have been pretty boring around here. We have gotten some much needed rest after our crazy August. The only thing Kai has had is an ultrasound last week of his kidney's and bladder. Thankfully no major problems were found they just want us to repeat this in two years. We have an appointment with the urologist again in November where they will run a couple of other tests to make sure everything is working right. They are being very thorough since we have no idea how this disease will progress. Which is very comforting for us to know we have some good proactive physicians caring for our little guy.
A big piece of good news is Kai was accepted to Shriner's Hospital in Salt Lake!! This is a huge blessing since any care he receives their is covered at no cost. This includes any doctors visits, therapy, surgery, etc. He has an evaluation scheduled October 21st. We are counting down and hoping that many good things will come from this opportunity.
Kai is continuing to enjoy kindergarten and seems to be making lots of friends. We are hoping to meet with his teacher and principal in the next week to explain more about Kai's condition, and see what we can do to make this a positive experience for him.
Other than school we hope to have a very laid back couple of weeks with only two therapy visits. Here's to hoping right?

It has been a very emotional week. With Kai's first day of Kindergarten and Ainsley Mae's baptism I am an emotional wreck!! I will write more details later but thought I would post some pictures from our big week.

The past month we have been busy taking a "staycation", celebrating Ainsley's birthday, attending Kai's therapy & sleep study, going on dates with Grandma and Grandpa, and getting ready for school to start. We are going to continue the busy trend this week with four doctors appointments, physical therapy, kindergarten testing, first day of kindergarten, an anniversary party, Ainsley's baptism, and a family dinner. I don't know if that made your head spin, but it does mine!

Unfortunately the past couple of months Kai has been having some "urological" problems, if you catch my drift. At first we thought maybe it was from the trauma of me being incapacitated, however, it has continued to be a problem. So after consulting with his pediatrician we have decided to take him to Primary Childrens on Tuesday to see a urologist. More info to come following the actual appointment.

Another bummer is Kai's back and trunk muscles have gotten worse over the last couple of months. As a result he has a hard time sitting for long periods of time. We are trying to see if there is an adaptive seat we can use, if not we are going to have to resort to a wheelchair. YUCK! Not that he would be in it all of the time, just during sacrament meeting, and maybe sometimes when they are sitting in school. It would also come in handy when we are shopping or going for walks. Strollers just don't provide him enough support.

On to some more positive news, Kai starts kindergarten this Thursday! I will be sure to post some first day photo's. Ainsley started on the 20th and is loving the 3rd grade. She will also be getting baptized next Saturday. Her dad and I are so proud of the choices she is making. We are so blessed to have her as our little girl. I definitely would not have made it through the last few months without her!! You can also look forward to pictures from her special day.

Below are some pictures of our happenings over the last few weeks.

THE CHOSEN ONES
I had a dream the other night. It came to me so clear. I stood before the throne of God,afraid to come too near. God said to me, "I hear your prayers. There are answers you can't find. I brought you here to talk to me and help to ease your mind. "I said,"Well, yes, God, I am upset...About my special one. This punishment is awfully harsh...Whatever have I done?" God looked at me and shook his head, He said, "My Dear, you've got it wrong. I sent this special child to you because you are so strong. I searched and searched to try and find someone with a love so rare. Parents so unselfish they could give him that special care. I try to save my special gifts,like those you're speaking of,for a special kind of parents I call the 'Chosen Ones. 'Of all the ones to choose from,I know I've got it done...Parents who deserve my best,an honor you have won." -Unknown

It is way to easy to develop a "Why us?" attitude and for me to bury my head in the sand. Which to tell the truth I have wanted to do lately. When I see him taking longer to recover from one day of being a kid than he used to, I get extremely overwhelmed. Some days I want to wake up and have him be "normal", and then I find something like the above poem that slaps me in the face. Jeremy and I are so blessed to have Kai be a part of our family, and we love him so much. I can't imagine what this world would be without him, and hopefully we will have to wait a very long time before we find out. We truly believe we have been given His best.

I wear my sunglasses at night

This picture is from our latest fishing excursion up American Fork Canyon. Where Kai's daddy and great uncle built one heck of a fire to roast marshmallows. I am surprised we left without anyone getting burned in some way. Although I have yet to ask my uncle how his right ear feels. It was facing the fire for a good hour and was looking pretty red.

Kai had another game on Saturday and did really well. Unfortunately he was only in the outfield for one inning. He was just too tired. I will just have to make sure he doesn't do anything strenuous a couple of days before his next game. Below are a few of the pictures I took at his game. Yes, I actually remembered my camera. Aren't you proud? Notice the tongue, anytime he runs it is sticking out. He is just working so hard to get there as fast as he can.





We had a first with Kai yesterday, a haircut with no screaming and crying! It was a minor miracle. Below are some pictures of the thrilled little boy, not really. But at least he wasn't crying.

Lillifer

Last year Kai had to say goodbye to his little furry pal Ace. So for his birthday we took him to the Humane Society to pick out a lower maintenance buddy. We left there with the cutest black and white kitten named Lilly. She has been a wonderful addition and loves Kai very much. Since my mom has been here she has been an absolute stinker, thinking the rules don't apply. Below is a picture of her latest attempt at bending the rules. She is not supposed to be on the table, but figures since the chair is on the table it must be okay. So Jer's nickname of Lillifer definitely applies.




Kai has had a pretty good week. He is loving having his "Grandma Mike" here, and had his best t-ball game yet today. He was actually able to field a hit, and was so proud of himself. Unfortunately he was so tired the last two innings he just sat and played in the grass. I think that two games in one week is just too much for him. Thankfully he will have a week to recover before his next one.

Yes I am posting and it has only been six days. I am on a roll..NOT! I thought that since I am limited physically there would be all the time in the world to post. Well I was wrong. I may not be lifting but I am still chasing and caring for a sick little girl. Poor Abby has been miserable since last Thursday. Despite this we still ended up having a great weekend.

Unfortunately last Wednesday we had to cancel Kai's OT session because he was very tired, and we didn't want him to miss out on t-ball. Little did we know that lightning would strike a power poll and prevent us from making it to his game. Oh well, I still think it worked out for the best.

On the fourth Kai had a busy and fun day. He was able to play with his best buddy Ali and go to a movie with his Grandmama and Grandpapa. We then had a BBQ and did fireworks. For those who have never experienced fireworks with Kai, let me just say it is not a pleasant experience. He usually will curl into a ball and shut down mentally. He just can't handle the combination of lights and loud noise. We were prepared for a similar event this year with ear plugs. However, about half way through he took them out and decided he didn't need them. He spent the rest of the night talking and actually ENJOYING the fireworks. His dad and I were so happy. This was the best fourth we have had since he was a little baby.

Kai continued his streak of improvements today at aqua therapy. He actually voluntarily put his head all the way under water! Brian and I were completely shocked, it is usually a fight to even get him in the pool, let alone his head in the water. What was even better is his daddy was there with us today. We will have to make sure he is there more often if we are going to have results like this!!
A funny little story from therapy today..Kai had been blowing bubbles in the water and I guess he sounded like a pig. So he and Brian were talking about nostrils and Kai said, "If I were a pig they would be postrils not nostrils!" I guess he figures all of a pigs body parts start with the letter P. Funny boy!!

Below are a couple of pictures from the 4th of July..Sorry they didn't turn out real great, I was having problems with my camera settings.



Kai before he realized fireworks could be fun.


Kai after he decided to try and have some fun..notice the earplugs.


One unhappy little girl!


The difference a Popsicle can make.