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

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.

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.

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.

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).

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

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!!

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.

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.

A Great Day!

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

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

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

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

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

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

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.