Meander through the Mountains.

The girls flew to Regina on Saturday with our two caregivers Kim and Kelly. Todd and I started out the next day driving spending one night at 3 valley Gap, the mysterious hotel trapped in mountains and low cloud. It reminded us of a scene from scoobie doo, a ghost town, , no cell service, no wiffi, and some pretty time warped staff as well as hotel guests.

Our next stop was Banff. Todd and I retraced the steps of our honey moon, by going on a bike ride around tunnel mountain. However the bike ride turned into a mosquito infestation Todd got at least 50 bites, I was unscathed as growing up on the prairies I have become  immune. We ended our time in Banff eating where we ate 16 years ago...The Grizzley House-a fondue place.

We ended up in Regina yesterday......and have been surrounded by cousins, uncles aunts, grandma/pa and a new baby....Oliver.

Although we are having a great time, there is so much weighing heavily on my heart. Going back we are once again looking for a new fulltime caregiver, a new teacher's aide, as well as options for Kourtney's schooling Virtual???. We may even be going down to Minneapolis for a consult, and just a consult to see what a successful bone marrow transplant will look like for Kourtney. So many things are up in the air, but what I learned, the more I worry, the more I plan, the more I take it own as my own.......disappointment ensues. But what I have learned is I need to lay it all down...At HIS FEET.

Kourtney and EB

KOURTNEY CHARLENE KUJAWA

I can do all things through Christ who strengthens me.

Phillipians 4:13

Recessive Dystrophic Epidermolysis Bullosa (EB) is a genetic skin disorder. There are 4 types of EB, ranging from mild to very severe. Kourtney's type is severe.

EB is characterized by blistering of the skin with only a slight amount of friction. Kourtney's EB also affects her mucous membranes such as the eyes (cornea), the mouth, esophagus and rectal area.

Kourtney's blisters are significant in the fact that her blisters cause scarring. Repetitive blistering and scarring of affected areas cause contractures of the hands, webbing of the toes and strictures (or narrowings) in her mouth and esophagus.

How does it affect Kourtney:

• Kourtney has dressings on all her extremities to protect her skin. The bandages are changed every 36 hours, taking 1 1/2 hours each time.  They are also checked every morning and every evening.

• Kourtney's hands have developed contractures and her fingers have become fused together. She will require plastic surgery for the rest of her life to maintain proper hand function. The plastic surgery requires skin grafts from Kourtney's thigh or abdomen and placing them onto Kourtney's hands. Surgery is painful and intense.

• Kourtney has had a difficult time eating due to being tongue tied, and having a small mouth. People with EB have very high nutritional needs as it takes many calories to heal. In the past many children with EB died because of malnutrition. At 2 1/2 Kourtney ended up getting a feeding tube placed into her to help meet her daily calorie requirements. Kourtney can eat small amounts of food by mouth. We call her our social eater (chocolate is her favourite.

• Kourtney's esophagus is also prone to blistering. Sometimes she cannot even swallow her own saliva. Kourtney's airway is not challenged but swallowing is painful and uncomfortable.

• Kourtney's corneas have also had blisters on them. The cornea refracts the light coming into the eye, so when there are blisters on her cornea, her eyes become very sensitive to light. The pain is excruciating. We have been able to relieve the eye problems by using many lubricants in her eyes at night.

• Kourtney uses an electric wheel chair for long distances because she gets blisters on her feet in addition to lacking the energy to walk long distances.

• In the very near future Kourtney will be considered for a Bone Marrow Transplant as it is believed that her own bone marrow is incapable of keeping up with the demands her body has.  This step is encouraging but very scary at the same time.  Please read the blog entry This Will Give You the Shivers to read more about it.

The Grand Scheme!

Yesterday my 30 day challenge completed. Like I have said, the 30 day challenge was definetly not so I can look better in a bikini, it is about keeping strong so that when the difficult days are upon us so I can have "storage". I believe though the grand finale came last night It was like for a moment Kourtney's pain disappeared, her obvious deformites were masked, I believe I got......a glimpse of heaven last night.
 Kourtney sang " Your Hands " and the video from the previous post was played. After Kourtney sang 1000 people stood to their feet, giving Kourtney a standing ovation. It was one of those moments, that I realized, that Kourtney's suffering has a bigger picture, the Grand scheme was revealed. That to me was truely was one of the most momentous occasions in Kourtney's lifetime.

I will not not boast in anything, no gifts no power no wisdom. But I will boast in Jesus Christ, his death has paid my ransom!

Please read the previous blog, for insight into what led up to last night. Two more services to go today.