May 1 Update

Hi just a quick note to let you know that we have had a great week with Kourtney. She seems to have the sparkle back in her eyes. It is only through your prayers that we get over the humps.

I also have to made a conscious effort to be thankful in every situation. I am so thankful that Kourtney has had 2 full weeks at school without any major concerns. We have even walked to school everyday (Kourtney in her wheelchair). We also sang this weekend in our church sunday school program. I am so thankful for the opportunity to do this as a family. We were also at mom and dad Kujawa's tonight celebrating birthdays and Mothers Day. What a joy to see cousins playing together, giggling and enjoying being together.

I am so thank-ful for all of you who pray diligently for our little family. I think it is so awesome to be able to email and share not only the pain but the joy we encounter as a family.

Tonight Todd, Kourtney and I were talking. Kourtney said, "Will I have EB forvever?" I said, "Yes you will but when you get to heaven you won't." Kourtney responded, "The first thing I will do is ride a tricylcle, then wrestle with you."

Kourtney is starting to acknowledge her feelings about not being able to do things like the other kids. I let her vent but than I have her focus in on the things she can do. Pray for her spirit, that she will not carry bitterness, and pray for Todd and myself as parents that we will learn the best ways for Kourtney to vent her frustrations but not keep focusing on them..

I feel blessed to have you all praying for us.

Update 3

Dear friends and family in prayer,

I just want to update you today. Thank you so much for all your prayers and emails yesterday. It was so awesome to feel the prayers and love from everyone. Last night, just as we thought we were rounding the corner with her eyes and cold symptoms, Kourtney complained of a stomach ache. At 10:30 pm Kourtney began vomitting, just when we thought there was no more in her stomach she would start up again. We gave her gravol and that came back at us instantly. We took her to the ER in Abbotsford where she got a shot of gravol and sent her home. The Doctor thought it was the stomach flu, so did I because of the smell. She slept well for 4 hours, and is now vomitting again. For you nurses, she doesn't have a temp and she is very alert. Funny thing; her eyes aren't sore any more.

It may sound weird but the stomach flu is way more tolerable for all us than the EB symptoms at least we know that this is temporary and the Doctors know how to treat it. I feel more Peace today, the sun is shining and we can have the blinds wide open. It is only through everyone's prayers that I can have this PEACE. The song that I fell asleep with last night was: Thank You For Saving Me.

Thank You For Saving Me

Thank you for saving me, what can I say?
You are my everything, I will sing your praise.
You shed your blood for me, what can I say?
You took my sin and shame,
A sinner called by name.

Great is the Lord,
Great is the Lord,
For we know your truth has set us free,
You've set your hope in me.

Mercy and grace are mine, forgiven is my sin,
Jesus my only hope, the Saviour of the world.
"Great is the Lord" we cry,
God let your kingdom come,
Your word has let me see,
Thank you for saving me!

Yesterday all the words of comfort and support were the truth that set me free from the worries and fears that overwhelm my thoughts when I am overcome by the unrelenting symptoms of her disease.

I also need to also give a huge thanks to my wonderful inlaws, Dave and Bev. We woke them up last night to come be with Shaelyn when we took Kourtney to the hospital. They have been our hugest support and I am so thankful they live close by.

I will keep you posted. As I am sitting here typing, Kourtney has tolerated the Gravol and little amount of juice we have given her through her g-tube, which is a good sign. Todd is home today so Shaelyn and I are headed to Walmart for some applejuice, and Gravol suppositories and maybe a new shirt or something,(hee hee).

Update 2

Dear friends and family,

Just a little update as I start our day. Last night was a great night. Kourtney slept well and so did Shaelyn. (sleep makes the world of difference for everyone).

Since Sunday, Kourtney's eyes have been slowly improving and yesterday she opened them in the morning with little pain. She still requires sunglasses. We are thankful that the cornea in general heals quickly. For me though is the fear of this happening again and not knowing why. Todd and I have been vigilent in making sure lubricants are applied to her eye at night. There is not much more we can do except pray for guardian angels around her bed at night to keep her eyes safe. The damage done to the cornea also worries me. If this keeps happening Kourtney will require a cornea transplant in her adult years. Not only has there been damage to her eyes, her skin also pays the price for stress also. It still amazes me that Disneyland caused little blistering but sitting idle causes more damage.

Kourtney's nose is also stuffed up. We can't decided weather it is a cold or allergies. I think it is a viral thing as Todd and I have it. The Doctor thought it was allergies, I guess we will know in the days to come. So naturally her eyes are even more afftected when her nose is running.

Could you pray for me today? I feel so overwhelmed and fearful today. My mother's heart is breaking. I have been doing this for 7 1/2 years and will never get used to watching my child suffer. I know that there will be good times again and I anticipate them. It is just trying to manage a disease that is so out of my control. I am so thankful for email because I know I have many prayer warriors out there that will take this request to God.

Thank you for your prayers.

Janelle

April 9 Update

Dear friends and family,

The 9th of April already. Our trip to disneyland went very well. We had so much fun. Our 3 days at disneyland were long and packed full of activity. Kourtney did very well, we took her on many rides and she tolerated the bumps very well. She absolutely loved the ferris wheel that rocked back and forth while the wheel went around. We were pleased that the trip worked out so well with little or no trauma to Kourtney . . . then we returned home.

Since we have been back we have been battling problems with her eyes. We suspected allergies were the cause of the eye sensitivity, and treated her accordingly. This morning Kourtney began screaming and I knew instantly that her eyes were the source of the problem. All day long Kourtney has not been able to open her eyes. Her R eye must have a scratch on her cornea and even the smallest amount of light causes excruciating pain. We have tried eyedrops, (lubricants and steroids) but nothing seems to calm the pain. The doctors don't have any easy answers and there is not a lot they can do.

We ask that you once again lift up little Kourtney and the rest of our family in prayer. It just rips my heart out when I see her in so much pain and I feel so helpless. We try so hard to manage such a cruel disease and our efforts seem so meaningless when we end up having so many problems with her.

We just have had so may disappointments in the last few weeks. Before we left for Disneyland we had a few disappointing things happen at school, we are still waiting for her esophagus surgery and have been told that cutting back Kourtney's hours of school greatly affects her Teacher's Aid time.

We have had 3 months of calm and once again we are in a crisis situation. Please also pray for our marriage. Todd and I have really been having a rough time with all this. We deal with things so differently and we end up taking a lot of our frustrations out on each other.

We know we can count on you to pray for our family in the next days and weeks to come.


Until next update,

Janelle

March Update 2005

Hi there everyone. Another month has gone by and we are so feeling the benefits of reducing Kourtney's hours at school. She has had a bit of a cold but got over it very quickly. She is doing remarkably well. Spring break is in 2 weeks and we are looking forward to our much needed family vacation to Disneyland.

Kourtney will have surgery done when we get back (hopefully on the 31st). I have done a lot of praying and waiting on the Lord for making that decision to have her esophagus opened up. She has been eating very well with no episodes of choking or blistering. I am praying that her esophagus will be ok but at least the radiologist will be able to take a good look inside her esophagus and see what kind of damage there is and be able to fix it. Watching her eat and crave food is really neat to see and we always want to make sure that these options are available to her as time goes on. Would you pray that her esophagus is ok......I would love to show the gastroenterlogist that God did a miracle. I have spoken to him many times and he can't get his head around the fact that Kourtney is a little girl not just a medical case. Taking her to Disneyland was almost shocking for him. I would love to text message my parents after the procedure and say her esophagus is clear.....

The plastic surgeon on the other hand (literally) will be doing a very minor surgery on her left hand...all in the same day. We have known him since Kourtney was 6 weeks old. He is totally willing to work with us. He doesn't ever talk to me when we go for a visit, he always talks to Kourtney, I can't get a word in.
He wanted the two surgeries done together. I was told over and over that they didn't do these two things together. We think he is an angel wearing surgical clothoes.

Do you realize that 4 years ago, everyone was praying earnestly for Shaelyn's arrival....I still get goosebumps when I see her running, swimming and skating. She has been such a shining light for us. I will never take her "whole skin" for granted.

Thank-you for your continued prayers......until next month.......Janelle