Novemver 21 Update

Tomorrow Kourtney is heading back to school.....her nights have been free of choking and her esophagus seems to be cleared of the obstruction without any surgical intervention. We know that she will still require a scope to view the damage done to her esophagus by the blisters.

This week has been tough, we have been really home bound, Shaelyn has been bouncing off the walls, Kourtney has not been going to sleep well, and I have been sleeping with the girls, which has made me feel overwhelmed (I feel a vacation would be nice right about now.) Oh yeah, Todd has been unwell this week.

Despite all this, life goes on. We have been encouraged by meals, (Quirings, MacDonalds and Pauls, thank-you) by Kourtney's grade 2 class which has sent cards, books and toys, Todd's grade 4 class providing a basket of goodies for Kourtney, and for all the encouraging emails saying that people are praying - how cool. For those of you feeling sorry for Shaelyn at the moment she has cashed in greatly on all the generosity. There is no such thing as "mine" in the Kujawa house.

Looking at Kourtney right now sleeping.....I still can't get my head around why God chose Todd and I to parent this child. I feel so helpless in preventing the disease that has done so much damage to her body despite our efforts in maintaining her skin. But what always amazes me is her soft gentle spirit that loves God and loves her friends and family, the child who loves to leave messages on answering machines telling how much she apreciates that person, the child who still runs around Revy with a child size shopping cart even after a fall that she is healing up from. If you want to pray for us specifically pray that Todd and I will never ever hinder that spirit by being so overwhelmed by her disease. Pray that we will be able to focus in on the little girl not on the EB. Kourtney has touched so many lives and will continue to do so and I pray for strength and energy to carry on as we continue on.

We are looking forward to Christmas, I have already has started the Kujawa Gauzette, this time written from Shaelyn's perspective.

November 15 Update

To all our friends and family,

Sorry I didn't email this am but our power was out this am and than Kourtney dominated the computer the rest of the day.

Our night went extremely well. Kourtney had no swallowing issues, we however kept in mind she was really drugged last night. She had a very quiet lonely day today but her spirits are incredibly great today. The sparkle is back in her eyes and the blisters on her face are starting to dry up. I still haven't called the surgeon as I really want to see how her night goes tonight. She has eaten her favourite (a goofy bun made by my mom's sister Sharon), she managed to swallow it. But I think that she will need surgery in the next couple of weeks. I am really waiting on the Lord to give me a clear sign that she needs it or it is something we could hold off on.

Kourtney's face is starting to dry and scab over, thank goodness for a improved dressing called Mepitel. It is sticky enough to stay on and heal but will peel off without taking the scab with it it is actually revouluntionary for this disease. Her chest area has the same dressing on it and is already getting smaller, we just have to keep pumping her full of her feed through her gtube, she needs the calories to allow her to heal.

On Friday night Todd and I prayed and asked God to heal or or take her into heaven....watching a child suffer has to be one of the hardest things to watch and also make sense of. Todd and I felt wasted and hopeless. The next morning Kourtney woke up and said, "Mommy, you and I are going to make it through this". I couldn't say anything, during the day God gave me so much Peace it almost seemed I was in a state of shock. That night God spoke to me in HIS small voice and said, "Janelle, Kourtney's life is going to serve more of a purpose through her life than through her death, I have given her to you to help serve this purpose, hang in there and I will show you great and wonderful things, don't give up."

I still pray earnestly for Kourtney's total and complete healing, I always will but I honestly think that Kourtney's life will be a constant reminder of God's Amazing Love and Grace, even through the most difficult times.

We will keep you updated. Thank-you for your prayers.

I bought her lipgloss today, she put it on, looked in the mirror and said, "I look beautiful." That's what I call grace.

November 13 Update

To all our friends and family,

AS FOR ME AND MY HOUSE WE WILL SERVE HIM. WONDERFUL,COUNSELLOR, EVERLASTING FATHER,ETERNAL KING, WILLINGLY WE FOLLOW, TODAY I CHOOSE TO FOLLOW YOU.

Shaelyn has been singing these words for the last month. Brian Doerksen sings this song on his CD "TODAY". Whenever we get into our van Shaelyn asks us to play this song over and over again. I beleive that the words to this song has brought us through our last crisis with peace that passeth all understanding.

Since last Friday Kourtney has battled painful eyes, obstructed esophagus and a fall that took her skin off her face, half of her chest and both knees. On top of everything Todd's parents have been away cruising the Carribean.

In all of her seven years, Todd and I have never felt so much Peace through the storm. We feel that God is going to do something huge in our family or through our family and satan is trying hard to discourage us.

Before Kourtney's fall last night Kourtney kept repeating, "JESUS, JESUS, JESUS" I asked her what she was doing. She told me that she asked Jesus into her heart again, she said that she knew she only had to ask Jesus into her heart once but she thought she would do it again so she could have twice as much of HIM in her. After her fall she said "no matter what happens to me, I will always trust Jesus." That was enough for me to put aside all my grief and face this last episode with strength that only comes through Jesus, I was not going to give the wimp Satan any foothold this time or let him affect the family. We called the troops in to pray for Kourtney and in our home the most beautiful group of people came in to pray for Kourtney and for healing. Kourtney's grade 2 teacher this year is a believer and helped us bring the troops in.

We can still say this week.....as for me and my house we will serve Him. I am praying that God will do a huge work in our family in the months and years to come as we continue to look after Kourtney's skin disorder.

Please pray for her immediate needs: Kourtney's esphagus will need surgery in the months to come, please pray for complete clearance of her esophagus without surgical intervention as this surgery is very invasive and could cause further damage. Pray for speedy healing from her fall so that there will be no infection. Pray for Shaelyn as she saw the fall and was horrified by it. Pray for Todd and I that we will be encouraged as parents raising a very special family.

Our biggest prayer request is for Kourtney's complete healing...Shaelyn is evidence that our prayers were answered with a yes and that is how we want God to answer our prayers. We know God weeps when he sees Kourtney's skin, we pray for his complete intervetion.

This is the short edited version of our week. We haven't slept in the last week, we have had a night in the ER, a barium swallow at children's and had to to waint 3 hours just to see the surgeon a gastroenterologist. The surgeon gave us some very discouraging news about her esophagus which hit home once again how severe her disorder is. There was soooo much to take in. If you have any questions feel free to ask which would further help you to pray for our little butterfly princess.

With much love, Janelle

August Update

WE have been sweltering in the BC heat. Fortunately for us 6 years ago we were provided with a central air conditioning system that we we didn't have to pay for, God's hand was evident in all that. Kourtney remains very comfortable during the day and at night despite being wrapped from head to toe with her dressings . We also have a little swimming pool that Shaelyn and Kourtney spend their afternoons in. The sun seems to do wonders for Kourtney's skin.


Our summer also has been consumed with putting new flooring in and yes even more home renos. With the home renos, there is more dust in our house and Kourtney's eyes have been giving her more grief. Fortunately we came across some new medication for her eyes. In the past Kourtney would wake up screaming in the middle of the night my eyes my eyes. We would know that for the next week Kourtney would have to sit in complete darkness and wait until her eyes would heal. In May I took her to our family doctor as her left eye wasn't improving and I was at the end of my rope. Our family doctor wasn't there but another Doctor was on Doctor Peters. He prescribed a new medication for Kourtney, with one drop Kourtney's eyes became less red and she could open her eyes even in bright light.

One night the painful eye condition occured, we put the eye drops in and Kourtney woke up in the morning, her eyes clear and she said....."our God is a God of second chances". Just last week Kourtney woke up and her eyes were irritated, she needed to wear her sunglasses everywhere. I went to put the eye drops in and they were all gone. I phoned our family Doctor and to my dismay he was on holidays, there was no one filling in for him either. The walk-in clinics are useless as Kourtney's condition is rare. I decided to go to Costco and see if we could work out a plan with the pharmacist to get more medication for her eyes. (plus I had run out of my coffee and needed more to get me through the day). The pharmacist that we know well wasn't around and the one there was known to be too helpful with past experience. I decided that we would just have to wait another day and take her to the doctor the next day. As we were paying for the goods at Costco I spotted Dr. Peters (the Doctor who orginally prescribed the medication for Kourtney). He was with his family and was headed towards the food area for hotdogs and fries. We were headed that way also. I didn't want to bug him while he was eating. I prayed, and decided that if he came up to us and said hi I would ask him, otherwise I wasn't going to bug him when he was with his family. Sure enough, he came and said hi. I gave him the empty bottle, explained our dilema, he used his cellphone and called the perscription in to the pharmacist. DONE. Kourtney played in the pool that afternoon, here eyes wide open in the bright sun......It is the small things that we see God's hand in.

Another thing that has been happening, Kourtney has been craving more foods and is eating more. Although the vairety is lacking, she still is managing to eat without her usual choking episodes. I think the best thing we did for her was not to push her and make it something for her to enjoy and do in her own time. We know that the feeding tube was the best thing we could have ever done for her. I don't think that Kourtney would have done so well without it, it has been joyous though for us to watch Kourtney enjoy a grilled cheese happy meal, with a strawberry frutopia, and to see her eat it all up.

Thanks for your continued prayers for our special little girl.