Caring for KAI KAI

Little Lovebirds

2011-03-08T18:19:00.000-08:00

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

Kai Kai update

2011-01-17T09:39:00.001-08:00

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

2011-01-17T09:34:00.000-08:00

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

2010-10-26T13:52:00.000-07:00

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!"

2010-09-24T08:09:00.000-07:00

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

2010-09-21T18:30:00.000-07:00

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.

2010-08-24T19:24:00.000-07:00

(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.

2010-05-23T22:23:00.000-07:00

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!!!

2010-01-01T16:54:00.000-08:00

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!!

2009-12-25T16:36:00.000-08:00

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.....

2009-12-15T21:13:00.000-08:00

2009-11-05T15:41:00.000-08:00

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

2009-10-01T19:45:00.000-07:00

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

2009-09-17T11:48:00.000-07:00

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?

2009-08-29T14:18:00.001-07:00

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.

2009-08-22T13:55:00.000-07:00

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.

2009-07-22T21:29:00.000-07:00

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

2009-07-20T07:45:00.001-07:00

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

2009-07-11T14:24:00.000-07:00

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.

2009-07-06T19:40:00.000-07:00

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.

2009-06-30T19:08:00.000-07:00

Once again I am back to slacking. However due to the fact I can't lift anything heavier than a gallon of milk for the next six weeks, you may be hearing from me a lot more. Lucky you!

Other than his headaches Kai has been doing really well lately. We had his MRI on the 18th and found out his cyst has actually shrunk! Yeah! So I will be giving his pulmonologist a call to see if we should do his sleep study a little early this year, or go see an ENT about his adenoids. Hopefully we can get these under control so we can have our happy boy back all of the time and not just sometimes. Physical therapy went well on the 15th. He had a really good session and completely wore himself out. Not much new there, but at least he was compliant this time.

Last Wednesday Kai's T-Ball games started. Unfortunately he had to come home early due to an accident. Saturday's game went much better and he did great. I am so glad that he is actually having fun and looking forward to each game. He does have a harder time than the other kids but he can't tell, which is great! Below are a few pictures and a video my sister took. Kai has another game and OT tomorrow so I will post again soon.

2009-06-08T12:23:00.000-07:00

My stinker!

Go figure. Kai makes it through the entire winter with only one case of strep throat. The weather is now warm and what happens he gets sick with a cough. He has felt pretty crummy this weekend and spent a lot of time laying in my bed. Today when we got home from taking Jeremy to work we had a conversation that went something like this: Kai,"Mommy I know what made me sick." Me, "Oh really what's that?" Kai, "It was the lentils in our lentil soup." Where he came up with this I am not sure. He obviously didn't like the soup we had the other night, and is looking for a way to get out of eating it in the future. What a little stinker, funny & smart, but still a stinker.

2009-06-01T19:19:00.000-07:00

If anyone has seen "Bedtime Stories" these are what Kai is calling his Bugsy eyes.
Today we saw Dr. Larson to have Kai's eyes checked. Which is why his pupils are so dilated. Unfortunately he does not need glasses and can see just fine. No I am not crazy and hoping for my son to have problems. This just would have been the lesser of two evils. Why you may ask? Let me go back about three years.
When we were in the beginning stages of this journey with our Kai boy he had an MRI done of his brain. It showed an arachnoid cyst which we were told was no big deal unless he started having headaches down the road. Jump forward to about one month ago. Kai started complaining about headaches and has been having dreams at night that he is in pain. Since he failed his vision screening at his check up in April, I figured the eye doctor was the easiest and least expensive place to start. Well since Kai can't do anything the easy way he will have to have yet another MRI on the 18th of this month. This will be his fourth MRI and the eighth time he has been sedated in the last three years. Ahhh! Please pray this helps us get to the bottom of these headaches.

The kids and I had a good time tonight taking silly pictures, and some actually turned out pretty cute. Below are a few.

Did you know?

2009-05-29T20:18:00.000-07:00

In case you ever wondered where honeydew comes from Kai gave me a hilarious explanation. Today as we were driving in the car to pickup Ainsley from a friends, Kai ask me if I knew where honeydew melon came from, "like we had at the restaurant the other day". I was curious to hear where he thought it came from. His answer caused me to laugh so hard I missed my turn. He said, "it comes from worms. They eat the dirt and poop it out." Where he got this from I don't know, but it was too funny not to share. Now any time I eat honeydew I will think of my funny little boy!

2009-05-28T18:35:00.001-07:00

Yes, I have been a horrible blogger lately. Reading everyone elses and failing to update my own. I promise to try and be better.
Kai has been a busy little man the past few weeks. He has had occupational & physical therapies, an aqua therapy session, preschool graduation, and just being a five year old little boy. Whew! As you can see we have not had much of an opportunity to get bored.

Unfortunately Kai's physical therapy visits continue to be less than what I would call fun. Once again I allowed him to play too hard the day before and he ended up being one cranky little boy. How do you make your five year old boy understand that if he plays like his friends today he will be miserable tomorrow? It is something we have been struggling with for a long time and are at our wits end. Hopefully as he gets older we can help him to understand cause and effect.

Occupational Therapy went really well this month. We may have finally found a way for Kai to become a little more independent in the restroom. Yea for me!! He loves Brian and has continued to make progress with his sensory issues.
We found out this week in his aqua therapy that he has a "pool problem". If you remember back to his first visit with Brian he informed us he had a "swing problem". Well I guess he has decided to add one to the list.

Kai did great at his preschool graduation and I had the sore arm to prove it. He was so cute I just couldn't put the video camera down! I was worried when he sang his solo that he would freak out, but he didn't. He sang so sweet and just melted my heart. I am so blessed to have such cute kids! Below are just a few of the many pictures that Jer took. Hope you enjoy them.

Kai singing his solo.

What a silly kid!

Kai Reading his book to everyone. So smart!

2009-05-05T19:16:00.000-07:00

Our lives have been absolutely crazy these past two weeks. Between our trip to St. George and moving to a different house, I am BEAT! The recent changes and upheaval have been hard on the kids but especially Kai, causing him to be extra sensitive. So much so that on moving day he "ran away" to the old house when his cousin made him upset. Thank goodness he made the short trip unharmed. Needless to say we had a long talk about not leaving the house without supervision.

On the 27th I took Kai to occupational therapy. We spent the hour working out the kinks with Kai's "Bum Wiper". Which if it works will be coming to a medical supply store near you. I definitely think Brian needs to come up with a more catchy name though. All joking aside I really do hope that it works, for Kai's sake. For the time being he is okay having me help in the bathroom. However I can imagine as he gets older he will want more independence.

Kai had a great time in St. George, and he even made some progress with his sensory issues while we were there.
Exhibit A

Kai holding and not wanting to let go of Exhibit A.

Exhibit B

Kai allowing Exhibit B to crawl on him.

Those closest to Kai know what a big deal this is. He is so sensitive I can't even touch his head. So for him to allow a caterpillar to crawl on his arm is HUGE! It brought me to tears to see how excited he was on these two occasions.

Today after watching me cut Uncle Toddy's hair Kai agreed to let me buzz his head. He was in desperate need of a haircut and because we let it go too long I unfortunately cut some of his sores off. That will teach me to not cut it more often.
(For those who don't know Kai has been breaking out in gross sores since he was 10 months old. No one can figure out what they are or why he gets them. What we do know is they get worse when he has hair.) After at least fifteen minutes of torture we thought we were done. Unfortunately after a shower I found a few missed spots. When I told him there were a couple of more spots to be buzzed his response was, "NO YOU HAVE GOT TO BE KIDDING ME!" Being the mean mom I am I took the following pictures to capture this moment.

HAPPY (late) BIRTHDAY KAI KAI!!

2009-04-23T19:59:00.000-07:00

Our Kai boy has hit the big 5!! I can't believe it! I swear it was just yesterday that I brought him home from the hospital. But then that is how I feel about all of my kids. Kai has had an eventful five years, and knowing him the next five won't be any different.

On Monday Kai had physical therapy with Kelly and unfortunately he was less than compliant. We attributed this to being exhausted from the first of three rousing birthday parties. He obviously rode his new plasma car a little too much on Sunday. Not quite sure how since his daddy and uncle wouldn't get off of it!!

Wednesday we took him to see Dr. Cornish for his well check. Poor kid had to get his kindergarten shots and managed to fail his vision screen. So we will be making a visit to Dr. Larson in the near future to see if Kai needs glasses. My sweet boy just can't catch a break! Dr. Cornish commented that Kai seems to be getting skinnier. I told him that it's not due to the lack of eating. The kids eats non stop and I am not exaggerating! He told me he most likely looks this way because he is losing muscle mass. Big bummer! I am just thankful that he is still healthy in every other way and able to be a little boy. I love him so much and can't imagine life without his funny personality.

We have spent the past few days in St. George with my family. It has been a great few days spent unwinding from our busy month. The kids have had a great time swimming and playing with their uncles. Unfortunately we have to return to reality tomorrow. Since my internet connection is extremely slow I will post pictures once we are home and things settle down.

2009-04-08T20:40:00.000-07:00

Kai continued his comedic streak today with the best one yet. I received a call from his school asking me to come help him in the restroom. When I got to the school and walked down the hall to the bathroom what did I see? Kai standing in the doorway with his pants around his ankles singing "We will rock you"! He was just patiently waiting and passing the time with a song. What a goof! My mom made a good point today when I passed along this story. If it weren't for my sweet Kai Kai I would hardly ever laugh. Don't get me wrong my other three kids are extremely cute, they just lack the comedic timing of their brother.

Unfortunately last week Kai and Abby ended up with strep throat. So much for making it through the winter without him getting sick. Although I will take strep throat any day over respiratory gunk! He did recover quickly and is obviously back to his silly self.

I took Kai to occupational therapy today. Brian found the above story just as funny, however, it brought up Kai's inability to take care of himself in the bathroom. I will spare the gory details and just say we are looking at some devices to help him in this area. I hope that one of these work so he can have a little more independence.

Everybody wants to go to Heaven

2009-04-06T19:34:00.001-07:00

Today as we were waiting in the car for Jeremy to be done at work, the song "Everybody wants to go to Heaven" was on the radio. When it was over Kai ask me how we get to heaven. I told him by doing what Jesus wants us to do. He then ask,"So you can't take a car?". I then started laughing hysterically and his response was, "I take that as a no?". This almost made me pee my pants. I don't know what I would do without him.

I will post more later this week after he has occupational therapy.

Comic Trifecta

2009-03-30T19:48:00.000-07:00

On Friday we were going next door to play with Alison, Kai's best friend. I was in the middle of laundry and told him to just leave on his Spiderman costume. This is what his response was,"Oh yeah, cause then she'll think I've been working out." Then when he got next door he ask Alison's mom,"Do you see these muscles?" Melanie couldn't stop laughing.

Then yesterday he was sitting with his dad watching the Nascar race. He ask Jeremy who his favorite driver was. Jer told him he didn't really have one. Kai's response was this, "I like the blue 48 car, Jimmy Johnson, I'm gonna be a race car driver." Jeremy and I are still trying to figure how he knows that Jimmy's car is the blue 48.

Finally today he came out of his room very upset. He told me that he wants to make a sign for his door that says, "No Ainsley's Allowed!" because she wouldn't turn on Josh Groban for him. As soon as she decided to turn on his movie he said, "Oh never mind my sign will say Ainsley's are allowed." What a fickle little boy!

As you can see he has still been quite the character despite being in so much pain the past couple of days. His ankle that he hurt about a week and a half ago is still bothering him, so we may have to have it looked at. Hopefully it is just a sprain and will heal soon.

Not so new addition

2009-03-27T21:04:00.000-07:00

For those who have noticed, or will now notice, Kai has another biggest fan. For the past six years I have struggled when people ask how many children I have. I haven't wanted people to think that I seeking sympathy, so I haven't always included him in the growing tally. That is until recently. Kai has been talking a lot about his big brother and it hit me how unfair it is to not include Peyton. Another reason is I am starting to forget and I don't want to. I also want everyone to know about my sweet baby boy and what he has done for our family.

To start, on February 17, 2003 I found out I was pregnant with my second child. We were all very excited and were hoping Ainsley would have a little brother. On June 10th, two days before my 20 week ultrasound, my water broke. I still remember when the nurse confirmed this and that it didn't look good. Babies that early just can't survive. Jeremy and I were absolutely devastated. However, there was a small glimmer of hope. I had not lost all of my fluid and could go home on strict bed rest. To even have a chance at survival he needed to wait at least four more weeks. Deep down I think I knew we wouldn't make it that long. A week later on Thursday June 19th we went in for an ultrasound to check my fluid levels. I looked at the screen and knew there was nothing left. I was told there was no chance he would make it. We asked my doctor to give us the weekend to talk things over and Jeremy and I went home to cry and pray. The next day soon after I got home from picking out his burial outfit, I went into labor on my own. On June 22, 2003 at 3:20 p.m. Daniel "Peyton" Wynkoop was born alive. A true answer to my many prayers. He lived for an hour and a half, and just after his daddy gave him a name and a blessing, he passed away. I have never felt so at peace as I did that day. I believe that Peyton had a mission and he was able to fulfill it in the short time he was with us. He taught Jeremy and I so much and if it weren't for him I don't think we would be able to make it through this trial with Kai. There isn't a day that goes by where I don't think about and miss him.

So from now on when people ask me how many children I have my response will be,"Five, one of whom is watching over us from Heaven." After all he did live and I know he will live again some day.

Below is a video I made of the photos taken the day he was born. Just be sure to pause the music player at the bottom of the page.

2009-03-24T20:02:00.000-07:00

Last Friday while trying to get a very hyper Kai boy ready for school, I was informed that snakes don't wear underwear. To think for the last four years I thought he was a little boy!
The past week and a half we have been fairly busy between therapy and doctors visits. A couple of days after we had Brady to see Dr. Cornish we had to take Kai because he had a sore throat. His culture came back negative, go figure. Last Wednesday was the long awaited aqua therapy session with Brian the OT. I was a little bit nervous that Kai would absolutely refuse to get in despite my efforts to prepare him. After about twenty minutes on the stairs of the pool Kai finally decided he trusted Brian. I can't describe how happy I was to see my boy overcoming his fear and being able to move freely in the water. Sometimes it is difficult to watch him play outside with other kids because he really struggles to keep up. In the water however he can be like everyone else.
Yesterday I took him to see Kelly for PT. Kai did really well and even made some progress in the last month. Which is really exciting! The biggest problem we are having is getting him to realize his limits. He just goes and goes because he doesn't want to miss out and then he is miserable for two days after. So the days he is hurting and exhausted we are going to help him remember what he did the day before that may have caused his pain. Hopefully by doing this he can learn to recognize his limits and slow down on his own. Lets keep our fingers crossed and hope this works. I hate to see my little boy hurting.
Below are some pictures from his aqua therapy session.

Brian trying to coerce Kai to get in the pool.
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Stubborn Kai refusing to get in.

"Okay I will blow bubbles!"

Yes he is sort of jumping in.

Look at those legs! I don't think he realized Brian was swimming.

Yea I am done!

2009-03-12T19:30:00.000-07:00

Well other than Brady being sick with strep throat this has been a relatively quiet week. Kai has occupational therapy next Wednesday at the rehab pool. That experience I am sure will provide enough comic relief to last for months. I am very interested to see how Kai does getting in the pool. Hopefully he can have some fun and not be completely traumatized.
Yesterday Kai was drawing a picture and ask me,"Isn't that unique mom?" His vocabulary continues to amaze me! Then last night I was changing Abby's diaper and he came in to give me a kiss. When he turned around Abby puckered up and wanted a kiss of her own from him. It was so sweet. She loves Kai so very much!
Below are some pictures I took today of the boys. My mom sent each of the kids a letter with some stickers. Kai and Brady went nuts with the Spiderman stickers.
Oh and notice they are also wearing their Spidey pajamas.

2009-03-03T19:50:00.000-08:00

Well things have been pretty quiet around here. Yesterday I took Kai to occupational therapy, or as I call it my much needed dose of comic relief. Brian pretended to flush Kai down the toilette again, only this time he didn't get hurt. Instead he lost his pants. Kai then said,"That's why my name on the Wii is moonbeam!"
Brian tried to prepare Kai for our visit to the pool in a couple of weeks. They played in the water with straws and then had a water fight. Kai looked like the swamp thing in his green grown up scrubs. I am still kicking myself for not having a camera. He looked so darn cute!
Today since it was so warm we went to the park and had a picnic. We spent about five hours outside playing. Hindsight being twenty twenty this was not a good idea. Kai was in so much pain tonight I had to give him his pain medication. I think it was the combination of therapy yesterday and playing too hard today. His little joints and muscles just can't take it. Hopefully with some rest and relaxation with his daddy tomorrow he can feel better quickly.

Payback

2009-02-24T19:09:00.000-08:00

We continued our busy few weeks with physical therapy yesterday. Kai was very excited to see Kelly and play the wii. Since Kai struggles with recognizing the signals that he is getting tired we have to ask him how he is feeling. The problem we have now discovered is as long as he is not bored he says he feels fine. Which is usually not the case. Yesterday Kelly asked Kai how his legs were feeling. Being the comedian he is Kai stuck his ear to his thigh like he was listening to what it had to say, STINKER! Then when we were leaving Brian came up to say hi and Kai smacked him across the face. I was so embarrassed! Brian said it was payback for last week and he deserved it. I still had a talk with Kai on the way to the car about how it is not okay to hit, even if he was just playing. Hopefully next Mondays OT session goes better than last week. Especially since they are getting Kai in the pool, Yikes!

Just a side note we are planning on having our annual "Caring for Kai Kai" fundraiser either the 9th or 16th of May. More information will be coming soon.

Trifecta

2009-02-20T18:53:00.000-08:00

Occupational therapy on Wednesday was very eventful. Brian had Kai doing things I never thought he would do, like falling into pillows or crawling through a tunnel while it was moving. During all of this excitement my poor boy was injured three times. The first one we think happened from Brian's watch while they were wrestling. It is a good size gouge in his head. Then Brian was showing Kai something with a basketball and instead of it going where he wanted it to it came off Kai's head, right on injury number one. Poor kid was pretty mad for a second. Finally at the end of therapy in preparation for working on his wiping himself, Brian was pretending to flush Kai down the toilette. He did this by having Kai in his lap and letting him fall between his legs. Instead of Kai coming down on the soft mat he came down on the floor which is concrete, right on his spine. He was the most upset about this, because I'm sure it hurt the most. So my sweet boy has two bruises to go with the sore on his head. Despite all of this he did have a good time.
This week he has had a hard time recovering from therapy. He has been so cranky, tired, and just not himself. I am going to ask his physical therapist to take it easy on him next Monday. I think this three times a month might do him and me in.

"Holes in the floor of Heaven"

2009-02-15T06:20:00.000-08:00

Yesterday Kai and I were watching a show where two people were getting married. He ask me if he was a baby when his dad and I got married. I told him no that he wasn't born yet, but that he was watching from heaven. He said,"Oh yeah, cause there are holes in heaven that I could look through." Due to his extremely sensitive nature I could not bust up laughing, but believe me I wanted to. There are days like yesterday when I don't know how I'm going to make it through, and then one of my kids does something like that. Thank goodness for my funny kids!!
Not too much has been happening. This Wednesday Kai has his first actual OT appointment. The last one was just his evaluation. Then a couple days later he has PT and that same week we register him for Kindergarten. So I should be posting more in the next couple of weeks. I actually am glad not much has been going on. Last year at this time we were on our fifth round of respiratory gunk and he ended up with pneumonia. So hopefully we can keep his healthy trend going!!

2009-02-04T15:46:00.000-08:00

Well it has been a very eventful week. Brady and Abigail got sick with respiratory gunk last week and are still fighting it. Abby was hit especially hard and had to go to the doctor on Monday. She was starting to get blue around her lips which freaked me out! So we have her on breathing treatments three times a day for a week. Thankfully I hadn't given back the nebulizer I borrowed. Thanks John and Mel. I promise I will return it soon. We are hoping beyond hope that Kai remains healthy. So far so good (knock on wood).
Today Kai had his evaluation for occupational therapy. I really like Brian the therapist, and I think he will be a good advocate for Kai. When we got there Brian had Kai get in big tire swing that had a bottom. For those who know Kai he hates movement, especially swinging. So after trying to get him to do certain things Kai told us that he has a "swing problem". I couldn't stop laughing. It was definitely an entertaining two hours. So we will now be going to rehab three times a month, twice for OT and once for PT.
One of our main concerns for Kai right now is Kindergarten. We are going to try and get him an IEP, which would ease a lot of my stress. He just continues to have no stamina and I worry about his sensory issues as well. If he does not qualify for some reason we may have to look at home school for him. Which I really don't want to have to do. I really think he needs the social interaction. Hopefully it won't come to that.
We had a couple of funny moments with Brady today. We were coming home on the back roads where all the horses are, and he said,"Look at the elephants mom!" If you have heard the bobcat story you will think like mother like son. In case you haven't heard it yet, too bad you have to wait till my funeral.
Then we were listening to "Life is a Highway" this morning. This is Brady's version of the song, "Life is a highway, someones in my way, all night long." Jer and I thought this was so funny and true. Brady is always running someone over.

Comic Relief

2009-01-29T08:40:00.000-08:00

Kai has been in rare form lately. About a week ago or so he was watching his grandma water her plants. He ask her why she didn't just build an aqueduct, and proceeded to explain what an aqueduct is and how it works. Can you believe he is only four almost five?!
Then yesterday we all of a sudden heard him start screaming and crying. Jeremy ask him what happened and he said,"Brady whacked me with a banana!" I could not stop laughing! Jer was getting mad at me cause I was making it impossible for him to discipline Brady. I am still laughing about it.
Finally today Kai came into the kitchen and started telling me about how grownups get hair on their arms that they don't want. I wasn't quite sure where he was going with this. Then he said they can use "Smooth Away" and not have to worry about cutting themselves with razors, and when he is a grownup he can use it. The kid did a better job selling the product than the people in the commercial! Thank goodness for my daily dose of comic relief.

Happy Birthday Abby J!!! (1 day late)

2009-01-23T15:09:00.001-08:00

Yesterday was a big day in our family, it was Abigail's 1st birthday! For me it was a very sad day. My baby is not much of a baby any more. She also seems to know this, today she is acting so big and even had her first Popsicle. Yes I know it is only forty degrees outside. Kai and his sidekick Alison snuck in the house and took some Popsicle's, so then it was just the trickle down effect. She was hilarious and wasn't sure whether to laugh or cry.
I took the three youngest to see the pediatrician. They are all growing like weeds. Also Dr. Cornish said that this year with Kai is a big one. We need to show him that he can do anything he really wants to. We can't have him going through life with a woe is me attitude. I don't thing this will be a problem with him though. It is something I need to keep myself from doing. Yesterday was just one of those days, with Abby turning one and talking to Dr. Cornish about Kai, lets just say I was weepy. Thankfully I have a wonderful aunt who called on just the right day. I also have a wonderful husband and great kids who make me smile.
Example: Last night Ainsley and I were talking about baptism. Since she is turning eight this year she has been asking a lot of questions. She ask me if the water in the church was better than anywhere else. I told her no that people can be baptized in a lake, ocean, etc. She then ask why every part of the body has to be under the water. I told her that it symbolizes all of our sins being washed away. Then she proceeded to ask me if they drain the water when you are done. I told her "yes", then she said,"Oh yeah, well you wouldn't want your sins getting all over someone else." I could not stop laughing!! I was reminded that she is still only seven not twenty.
Needless to say my day ended up o.k.

The best Popsicle face ever!

My sweet girl.

2009-01-20T15:09:00.000-08:00

Well I am actually getting better at posting more often..hopefully I can keep it up! Kai had physical therapy yesterday for the first time in a month and a half. It was the first time I have been able to talk to Kelly since Philly. He was as flabbergasted as I was hearing the news of Kai's diagnosis..or lack there of I guess I should say. Fortunately it doesn't change to much from the PT standpoint. We got him scheduled for an occupational therapy evaluation in two weeks. This was suggested by the OT in Philly. Kai's Grandma and I have thought he has needed OT for a long time. Kai and Kelly played the Wii Fit yesterday. I thought that since he didn't do anything other than the balance games that today wouldn't be so bad. Well I was wrong!! It has been an awful day. He is just so exhausted! When he woke up this morning he was so pale and after a matter of seconds of being in the car he was asleep. Then we got home and he just wanted to rest. This is so frustrating to me. I hate that after he is remotely close to being a normal four year old he can't function for at least a day. Thankfully the other days he is as happy and sweet as can be. If only I could be more like him!
Kai continues to love pre-school and is doing very well. He is loving his batman stuff he got for Christmas, and is so glad to be home with his brother and sisters. I have never seen him so lost as he was in Philly with no one to play with.
I just want to take a minute to thank my wonderful support group of family, friends, church members, and especially my mother-in-law, Cheryl. These people are always so willing to help and show so much concern for Kai and our whole family. There is no way we could make it through without them and the constant encouragement from Cheryl. Thanks again!

2009-01-15T08:26:00.000-08:00

Well we made it home safe from Philly late Tuesday night. Kai was an absolute angel on the flight home, he slept. When we landed in SLC it took us a few minutes to get him to wake up. Other than an exhausting day at the hospital we had a wonderful trip. Thanks again to Becky and Tuan for being such great hosts. We now just continue our journey that started three and a half years ago. The plan for now is to continue treating him symptomatically and hopefully at some point we will get a firm diagnosis.
Kai is very glad to be back with his brother and sisters. We just aren't as much fun I guess. Till next time.

Philly 2009

2009-01-12T18:51:00.000-08:00

There are too many pictures to put on here individually so I have made a little video. Enjoy!!

P.S. Just mute the music player at the bottom of the page so there isn't any interference.

Greetings from Philly!!

2009-01-12T13:26:00.000-08:00

Since I know life will be crazy when we get home I am posting from Jer's aunts house. We got here Thursday afternoon and saw Dr. Bonnemann on Friday. It was an interesting visit and definitely not what we expected. They finally finished all of the testing on Kai's skin biopsy. From these results and the genetic testing they have come to the conclusion that he does not have Ullrich's. Dr. Bonnemann said that the collagen VI deficiency is a secondary problem. So in other words we are back to square one!! While I was happy to hear he doesn't have Ullrich's in a way I am devastated that we have to start this process all over again. For the past two years we have had an idea of what to expect in the future and now we have no idea. We do know that he has a mild myopathy and a connective tissue disorder, we just don't know which one or what this means for his future. While at the hospital they had us meet with an occupational therapist. She told us we need to have him in occupational therapy and he needs to see a developmental pediatrician. Hopefully with these two things we can make some progress with his sensory issues. Please keep Kai in your prayers as we try to find out what is wrong with him. He is such a smart sweet boy and I don't want that to change.
Thankfully only one day was spent at the hospital. On Saturday we went with Jer's Aunt Becky to take her daughter back to Syracuse University. We then drove to Niagara Falls and spent the night. Sunday we headed to Palmyra, NY to see some of the church sites. It had been ten years since I participated in the Hill Cumorah Pageant. Driving up to the hill brought back all those feelings and memories.(Anna if you read this you will know exactly what I mean.) It was very special to share with Kai all of the important events that took place there. We then drove back to Becky's, and have been just hanging out since. We go home tomorrow night and begin our new journey as a family. Thank goodness we have lots of family and friends to help us along the way.
We hope that everyone had a wonderful and safe Holiday Season!! I will post pictures from our trip and the holidays soon.

2008-12-22T11:57:00.000-08:00

Wow time flies when you're having fun!! I can't believe it has been nearly two weeks since my last post. Kai is getting very excited for Christmas. Last Friday Santa made a special trip to his school. Kai threw a royal hissy fit because he thought Santa wouldn't still come on Christmas. Unfortunately I was at the hospital having surgery so his teacher had to deal with his wonderful behaviour. Funny thing is once she took him to her house and turned on the Wii he was just fine. My dad says that nintendo is a narcotic for Kai, silly kid.
We have had a lot of snow recently so the kids are in heaven. I just have to regulate how much time Kai spends outside otherwise he is wiped out for days. We are looking forward to our trip to Philly in two weeks. Hopefully we can leave with a better idea of what to expect with Kai.
Hope that everyone has a great Christmas!!

Funny Story

2008-12-11T12:41:00.000-08:00

Just wanted to share this story really quick. Last night my sister and her husband watched the three older kids, so Jer and I could finish Christmas shopping. Somewhere along the way water was spilled on their couch by Brady. My brother-in-law told the kids joking that this was going to come out of someones hide, and ask who's it should be. Brady pipes up and says, "Kai!" Poor Kai Kai always getting the brunt of things.

2008-12-02T12:43:00.000-08:00

Well I hope that everyone had a good Thanksgiving. Ours was really nice. We went to Jeremy's Grandparents for dinner. Kai was so funny..Grandma Brady sat next to him and next thing we knew he was eating her cucumbers. Obviously he is not shy at all.

Unfortunately in the past few weeks Kai has continued to go downhill. He can no longer get in the tub by himself and is having a harder time negotiating stairs. I spoke to his therapist about this yesterday and he is very concerned. He said he has seen declines before but this is a sharp drop off. So he wants us to wait to bring him back until after we get home from Philadelphia. He also noticed that Kai's disease is not like other muscular dystrophy's. In most cases the muscles look really bulky, however with Kai this is not the case. His seem to be wasting as he grows. Hopefully Dr. Bonnemann can provide some needed insight into why this is happening so quickly.

On a lighter note, it is Christmas time!! Yea!! Kai is very excited for Santa to come. I love this time of year, because no matter what is going on in our lives I have something positive to focus on. I love seeing my children's faces on Christmas morning, pure joy! I hope that despite what is going on in our world everyone can recognize the blessings in their lives.

2008-11-16T19:46:00.000-08:00

I am going to try and be better about updating at least on a weekly basis. This week has been pretty uneventful. The only thing is on Thursday Kai woke up with a cough. Over the past few days he seems to have gotten a little worse. I can tell he is not feeling well because he sooo cranky! Hopefully by taking tomorrow off from school and other activities he can recover quickly.
Any time Kai gets a respiratory bug my anxiety goes through the roof. Because of his muscle weakness he can't produce a productive cough and so he is at risk for pneumonia. We felt very blessed that he only got it once last year and didn't have to be hospitalized. I hope and pray that this year goes as well as last, if not better.

2008-11-07T14:59:00.000-08:00

It has been a very eventful week or so. Batman's I mean Kai's Grandma Mike came from Wisconsin for a visit. We all loved having her here for Halloween. Kai insisted on being Batman like his best friend Shane. They are two peas in a pod.
Halloween at the Wynkoop's this year was a little different than those in the past. The trick or treat bags were not very full because Kai only made it to maybe six houses, and these were ones without stairs. His stamina is just not what it used to be unfortunately. On the other hand our dentist is probably thrilled! However, I think we all still had a great time. After all Daddy was home!!
On Monday this week I took Kai to physical therapy. It continues to be a depressing event. Kelly, Kai's therapist, commented on how weak he is becoming. He is falling more frequently, especially as he get more tired. Kelly told us it is critical to keep him active this winter.
On Wednesday we took him for his six month follow up with his pediatrician. At these visits we go over his care plan and adjust his medications as needed. The positive thing that came from this is we were able to knock out one of his prescriptions he hasn't needed for awhile. So now he only has to take his Neurontin (for pain at night), Naprosyn (more pain meds), and Prevacid (for his reflux), each night at bedtime. On really bad days he may have to take an additional two medications, Tylenol w/codeine (for really bad pain), and Atarax (for his itchies as he calls them). Yes we keep our pharmacy in business! As you can see Kai has been a busy boy. As long as we can keep him from catching any nasty respiratory bugs we should not have any doctor visits and only have one PT visit before we head to Philly January 8th.
Well that's enough for now, until next time.

This picture is just too cute not to share.

Kai(Batman) and sister Ainsley(some sort of princess).

2008-10-22T13:44:00.000-07:00

Not too much has been going on with Kai lately. Right now we have decided to go to physical therapy just once a month, due to cost and there isn't much they can do right now that can't be done at home. The key is actually doing it! I hate causing my sweet boy pain. We finally got Kai a much needed mattress. This seems to have helped his back pain.
I guess I didn't make much sense when I told Jeremy what Dr. Medne said. Because he called and spoke with her last week. She said that they are especially interested in Kai's case because his mutation occurred on a different gene than they have seen before. On top of this his presentation is much different than the other cases. So we will see what happens. Our trip to Philly in January should prove to be very interesting.

Biopsy Results

2008-10-05T19:44:00.000-07:00

Last week I finally received a call from Dr. Medne at Children's Hospital in Philadelphia. She had the results from Kai's skin biopsy that was taken a year ago. Unfortunately we are right back where we started three years ago. The test results came back normal. She told me that they have about twenty kids like Kai, who clinically present with either Ullrichs or Bethlem yet their biopsies come back normal. They think where there are so many that there may be a third gene that mutates instead of just two as they originally thought. I am still confused as to what this means so thank goodness we have appointment scheduled with Dr. Bonnemann in January. So we will just continue to take it one day at a time. Until next time.

Long Awaited Update!!

2008-09-16T10:41:00.000-07:00

Once again it has been way too long since I last posted. Kai has been a busy little boy! He has had some sort of appointment every week. Two weeks ago Kelly, his therapist, told me he thinks Kai's hip pain is from his soaz muscle tightening. This muscle is responsible for lifting the leg. The problem is it is very hard to get to. So when he is resting we are supposed to have him lay on his stomach propped up on a pillow. Hopefully by doing this we can slow things down a little.
Last Thursday we took Kai to see Dr. Pfeffer the pulmonologist. She thinks he may need his adenoids removed. She scheduled him for his yearly sleep study, which was last night. Unlike last time he did awesome!! In fact when he came home this morning he wouldn't let me take the sticky pads off. He thought they were cool! I had to do some bribery with the Wii. Those of you who know Kai know that he will do just about anything for a video game. lol.
School is still going well for Kai. He does seem to get frustrated when it comes time to color. He just doesn't have the strength in his hands to do it as well as his friends. So I think we are going to have to look into some occupational therapy.
I think this is about it for now...until next time.

2008-08-26T19:20:00.000-07:00

I can't believe it has already been three weeks since my last post. Obviously a lot of things have happened, some good, some not so good. I will start with the good stuff first. Kai started preschool on the 18th and loves it. I think for the first time in awhile he feels normal. I think that has been the hardest thing for me is seeing him realize that he is different. He also was able to start physical therapy again. Unfortunately his hamstrings have tightened and he has lost some range of motion. This is really what we want to avoid in order to keep him out of a wheelchair as long as possible.
Today Ainsley was talking about Kai dying. It stinks having a daughter who is so smart and in tune with her parents feelings. I never know how to respond because I don't want to scare her or blow her off. I'm sure that when people look at him they think he will be just fine. However, this is not the case. He will not live to be an old man and it breaks my heart. Well enough depressing stuff for today. Until next time.

2008-08-07T20:47:00.000-07:00

A Great Day!

2008-08-07T14:05:00.000-07:00

I apologize to everyone for taking so long to update the blog. It seems we are still recovering from Saturday. Everything turned out really well. It seemed that those who attended enjoyed themselves. The person who seemed to have the most fun was Kai, which is how it should be. Every time I saw him he had a different flavor of snow cone. Granted most of them ended up down the front of his shirt. lol
I will be posting pictures from the event later. Thanks again for every one's love, help, and concern. We couldn't make it through without you.

A little more about Kai Kai

2008-07-28T10:25:00.000-07:00

Back in the first post I told everyone a little bit about our family and Kai's disease. Since then the posts have focused on the fundraiser. I would like to take a step back and focus a little more Kai Kai and his needs. Kai is a very sensitive, kind, and loving little boy. He is so quick to forgive those who have hurt him physically or emotionally. Even still I have had a hard time giving him the care he needs to maintain a good quality of life. This care includes physical therapy, wearing of braces, doctors visits and daily stretching (by me) in order to prevent contractures. For the last year and a half I have been living in denial. My thoughts have been that if I just ignored the fact he is sick maybe it will magically go away or at least not get any worse. After seeing him suffer over the past few months with a great deal of pain, we have decided that living in denial is causing more harm than good. So we are taking the steps necessary to help Kai Kai maintain his quality of life. Right now he is still walking but tires very easily and if he over does it he has a lot of pain. Hopefully by getting him new braces and getting him back in physical therapy we can help him at least overcome some of the pain. We also need to take him to see Dr. Carsten Bonneman in Philadelphia, who specializes in collagen VI disorders.
One last thing, we have been completely overwhelmed by the amount of concern and love that has been shown to our family at this time. THANK YOU ALL SO MUCH. We hope to see everyone this Saturday!!

Auction List

2008-07-24T20:46:00.000-07:00

On the flier that we are sending around it says that we will post a list of the items up for auction on here. If we were to actually list all of the items on the blog it would take up way to much space. So if you would like a list just send us an email and we will forward one to you. Just a little side note, we have been completely overwhelmed and humbled by all of the donations. People who don't even know Kai have jumped right in to help us pull this off. Thank you once again for all of your kindness. We are all very excited for the 2nd of August and hope to see everyone there!!

-Jessica-
wynkoopfamily@rapidwave.net

Update

2008-07-21T20:36:00.000-07:00

Here is an update on the Fundraiser.....there are so many cool items being donated for the auction that I think I am in heaven. I only wish that I could keep them all. I hope that all of you are planning to attend the fundraiser. Again it will be held at Bonneville Park (1600 N 800 W) in Orem UT. We will be there from 9am to 2pm and look forward to seeing all of you friends and family, and hope to make many more friends. The carnival games will be a lot of fun for the kids and for the adults. We also have Subway sandwiches and snacks that will be available. I hope to post a list of the auction items that will be available by the end of the week. Please check back for more updates. Again we appreciate all of the kindness out there. Last but not least I want to welcome all of the P1's that are checking in now, thanks to the kindness of Hans we are getting a lot of interest.

--Jeremy

Batchelor

2008-07-15T00:22:00.000-07:00

Jessica and the kids are at a family reunion...Thus I am having a hard time sleeping. The house is to quiet. The location and times for the fundraiser have been set now and are as follows:
The fundraiser will be held at the park located in orem at 1600 North and 800 West from 9am to 2pm on Saturday Aug 2. We are still firming up what activities will be happening, so any ideas are welcome. We are doing the auction for sure....any of you who would like to see a pre-list of the items that will be available please email us. Subway is donating sandwiches so there will be food and plenty of fun to be had. Thank you all again for your kindness!

Dads First Post

2008-07-12T19:20:00.000-07:00

I thought that I should share my thoughts with all of you... The suggestion was made to me by a co-worker that we should have a fundraiser to help with the cost of Kai's care. We have decided to have a fair/carnival on Saturday Aug. 2, part of what we will be doing there is having an auction. I have a few items that have been donated for the auction, they are mostly sports related. We have a basketball that is signed by the whole Jazz roster from last season, a Larry Miller Entertainment Package. Utah Flash tickets. We also have a number of framed artwork pieces that we will be auctioning. I have been very overwhelmed by the response of those around us that are wanting to help. We hope that by doing this fundraiser we will be able to defer some of the costs in taking Kai Kai to Philly to see Dr. Bonneman. I will probably not post as much as my wife but will contribute while possible. If you have any questions for my wife or myself please don't hesitate to comment or to email us. Thank you again for all of your help!

About Us

2008-07-11T19:54:00.000-07:00

I know that many of you who read this blog may not know our family. So to start off here is a little background. Jeremy and I (Jessica) were married October 12, 2000. Ten months and two days later along came Ainsley Mae a beautiful blue eyed baby girl. She is getting ready to turn seven and loves everything that comes along with being the big sister. June 22, 2003 Daniel Peyton came to our family for only an hour before going back to his Father in Heaven. We were so heart broken that we wasted no time bringing Kai Brian into the world. He decided to share a birthday with his Grandpa "Mike". Kai Kai is a very imaginative little boy, who absolutely loves Spiderman or any other super hero. He also loves to watch any sport that happens to be on. On New Years Day 2006 Brady Michael joined our family, and in January of this year the final addition Abigail Jane joined us. Brady is our monster and family comedian and Abby J is our other beautiful blue eyed girl that loves everyone she comes in contact with. This is our family, now a little about the purpose of our starting this blog. Two years ago Kai was diagnosed with Ullrich Congenital Muscular Dystrophy, a collagen VI disorder which is very rare. So many individuals either go misdiagnosed or not diagnosed at all. Most children with UCMD are wheelchair bound in the first decade of life. Due to the fact it is late at night I will post about the disease more in depth at a later date. One last thing before I go to bed, it is our hope that by starting this blog we can make the community more aware of this disease and may save another family the headaches and heartache we went through in receiving a diagnosis.