Chicago and Back

We have been to Chicago and back! Kya is doing very well. The doctor was impressed with how she was doing. Her blood vessels looked good. Her muscle test was up 3 points since December! Her CMAS was a 42 out of 52. We are very excited! She has a few areas of muscle concern, but we are going to work on that. Now we are just waiting on the labs to come back. We will continue to taper her meds at the current rate and hopefully she can start preschool in the fall!!!

Thank you so much for your continuous prayers! It is nothing short of a miracle how well Kya is doing so quickly. I ask that you continue to pray for her and a complete healing in her body.

We also ask that if it is at all possible please make a donation to CureJM. They have helped us so much and they fund the doctor and research for Kya's disease. With all of the outside cries for donations from Haiti and everywhere else, CureJM is short on funding! Please help them continue their funding and support to help find a cure for this disease!

Thanks,

Kalee

A Good Day in Many Ways

It is a cloudy rainy day in Western Oklahoma. Kya is at home with Grandma Denny and Kaysa is at school. Lake and I are working at Elk City. We leave for Chicago this weekend so Kya can go see Dr. Pachman. It will be a 14 to 15 hour drive (probably in the rain)! Kaysa will have her first school basketball tournament and sing at Miss LHS and we will miss it. Did I mention we haven't started to pack and we have soccer and basketball games tonight and a music contest tomorrow night? So why is it such a great day?

3 reasons: One it is raining in Western Oklahoma! Two we just did a presentation over CureJM for the rotary club and it went great! Three Kya is doing great and I am excited to see what they say in Chicago!

Please pray for our family as we travel and are apart this weekend. Kaysa is staying home with Grandma Trish this trip. Continue to pray for healing and miracles in Kya's little body. Thank you to everyone who has prayed for her and to our CureJM family in helping us with our presentation! Thank you to our immediate family and friends for all of the great continuous help with the girls!

Kalee

CureJM Shirt Ideas for fundraising

For a while now I have wanted a neat CureJM shirt to raise awareness. I tried to find my creative side and this is what I came up with! Any comments or suggestions. I am just not sure which direction to go with this project. I can order some and sell them or take custom orders. The company I designed them through has all kinds of shirts, sweatshirts, products and anything you can imagine. What do you think? I need some feedback please!!!

Any ideas or comments would be appreciated!

Thanks,

Kalee

Kya's Results are back!

We received Kya's lab results back yesterday. Her aldolase was 5.6 which is fabulous! Everything else was also in the normal range except her Von Wildebrand. It has been running a little low. This just means that she will bruise and bleed easy. They think that is probably a regular thing for her and not a JDM thing. Lake's family has a history of that.

Thank you so much for your prayers as we continue to taper as planned! We will be returning to Chicago at the end of this month for a full evaluation and testing. Thank you again for all of your prayers!

Kalee

Awesome True Story I Received today!

Shared by a doctor

A couple of days ago I was running (I use that term very loosely) on my treadmill, watching a DVD sermon by Louie Giglio... And I was BLOWN AWAY! I want to share what I learned... But I fear not being able to convey it as well as I want. I will share anyway.

He (Louie) was talking about how inconceivably BIG our God is... How He spoke the universe into being.... Then He went on to speak of how this universe creating God ALSO knitted our human bodies together with amazing detail and wonder. At this point I am LOVING it (fascinating from a medical standpoint, you know.)... And I was remembering how I was constantly amazed during medical school as I learned more and more about God's handiwork. I remember so many times thinking.. 'How can ANYONE deny that a Creator did all of this???'

Louie went on to talk about how we can trust that the God who created all this, also has the power to hold it all together when things seem to be falling apart..how our loving Creator is also our sustainer.

And then I lost my breath. And it wasn't because I was running my treadmill, either!!! It was because he started talking about laminin. I knew about laminin. Here is how Wikipedia describes them: 'Laminins are a family of proteins that are an integral part of the structural scaffolding of basement membranes in almost every animal tissue.' You see... Laminins are what hold us together.. LITERALLY. They are cell adhesion molecules. They are what holds one cell of our bodies to the next cell. Without them, we would literally fall apart. And I knew all this already. But what I didn't know is what they LOOKED LIKE.

But now I do. And I have thought about it a thousand times since (already).. Here is what the structure of laminin looks like... AND THIS IS NOT a 'Christian portrayal' of it... If you look up laminin in any scientific/medical piece of literature, this is what you will see..

Now tell me that our God is not the coolest!!! Amazing. The glue that holds us together..... ALL of us.... Is in the shape of the cross.

Immediately Colossians 1:15-17 comes to mind.

'He is the image of the invisible God, the firstborn over all creation. For by him all things were created; things in heaven and on earth, visible And invisible, whether thrones or powers or rulers or authorities; all things were created by him and for him. He is before all things, and in Him all things HOLD TOGETHER. ' (Colossians 1:15-17)

Call me crazy. I just think that is very, very, very cool. Thousands of years before the world knew anything about laminin, Paul penned those words. And now we see that from a very LITERAL standpoint, we are held together... One cell to another... By the cross. You would never in a quadrillion years convince me that is anything Other than the mark of a Creator who knew EXACTLY what laminin 'glue' would look like long before Adam breathed his first breath!!

This just really touched me and made me realize that Christ is truly holding Kya together! When we feel like they are going to fall apart and things don't look good. We need to remember that they are being held together by the cross!

Thank you for the millions of prayers for Kya! That is what is holding her together.

Kalee

Waiting on Results!

Not much of an update until we get her lab results back. Kya had a great Easter and seems to be getting stronger each day. We were amazed at her running and picking up the Easter eggs with no hesitations. A far cry from spending the whole week before Easter at the hospital last year! We just praise God everyday for his healing and miracles he is doing in our lives! I thought I would share some fun Easter pictures with you and I will post as soon as we get the lab results back!

Kaysa and Kya with the Easter Bunny! (Note to Easter Bunny: Turn off Cell phone when taking pictures with little kids! It went off with Kya on his lap and she was not happy!)

Daddy is so glad you found all of those eggs!
Kaysa and Lauryn are ready to hunt some eggs! Kaysa is really going to miss Lauryn when she moves to Texas in May!

Addison, Kaysa, and Lauryn are determined to get all of the eggs!

Kya is picking up eggs as they say go!

Kya picks up another egg!

Kya strategically runs to all the pretty shiny eggs!

Kaysa shows daddy her bucket full of eggs!

Kya is so excited because her basket is so full it won't hold any more eggs!

As you can see she is doing better! We still have a ways to go to remission, but we celebrate each step we make toward it. Thank you so much for all of the wonderful prayers! Please continue to pray for her and our family.

Also, please pray for CureJM and their fundraising efforts. With the tough economy and all of the disaster relief funding efforts they are running a little short. If there is no money from donations the research on this disease stops! We do not want this to happen. They are learning so much about this disease, but so much is still unknown. Please don't let any more children suffer with this disease!

Thanks again!

Kalee