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
Monday, March 7, 2005
Monday, February 7, 2005
February Update
We want to thank-you so much for all your prayers. Since a Christmas letter went out, we have felt that God has directed us to make some very positive choices for Kourtney.
We decided to reduce Kourtney's hours at school by 2 hours every day. We were met with a fair bit of resistance by many people at the school, but we also knew she was very run down by the end of the day and she was absent more than she was present. We can say that in the first time in two years Kourtney attended school for 5 weeks with only one day absent. Her health has been great and her skin in pristine condition. God has answered our prayer for the month of January.
Todd and I have taken on the task of home schooling Kourtney and feel that she is doing well with that. We still need to catch her up from the month missed in the 1st term. We also need to work out the kinks with the teacher's assistant, teacher and communication.
I honestly think that our home was blessed over the Christmas holidays having my family here. Once again Brian Doerksen's CD, Today, was played over and over again. Tears flowed, hearts healed and relationships were restored. Kourtney loved having her uncles, aunties and grandparents close at hand to keep her social skills optimum. Shaelyn played nonstop with her cousin Wyatt, and Maguire enjoyed watching the activity.
We are still waiting to find out when Kourtney will need to have her esophagus opened up. The gastroenterologist really felt that she should have it done as it really hasn't been good since November. Kourtney still loves to eat although we have had to restrict some of her favourites. We are still praying for a miracle for her esophagus. We would love to give the glory to God and give the gastroenterologist something to get his head around as he nears retirement (in other words he has been really ornery with us and think he has been doing this for so many years he has lost his heart).
We also shared in our Sunday School open session (Discoveryland grade 1-5) about Kourtney and Shaelyn. We told them what happened with Shaelyn but also told them that the biggest miracle of all is what God has done in Kourtney's heart through all trials she has been through. There were many children at each service. We were glad to share with the children and really enjoyed doing it.
We are off to disneyland in March during spring break. Todd's parents will be coming with us. We are very excited. I have never been before so I am thrilled. I have been hearing that children in wheelchairs get to go to the front of the line . . . that will be nice.
Please continue to pray for Kourtney's health, her esophagus and her continued wonderful undaunting spirit.
We give the praise to God for one great month. Thanks for your prayers.
Janelle
We decided to reduce Kourtney's hours at school by 2 hours every day. We were met with a fair bit of resistance by many people at the school, but we also knew she was very run down by the end of the day and she was absent more than she was present. We can say that in the first time in two years Kourtney attended school for 5 weeks with only one day absent. Her health has been great and her skin in pristine condition. God has answered our prayer for the month of January.
Todd and I have taken on the task of home schooling Kourtney and feel that she is doing well with that. We still need to catch her up from the month missed in the 1st term. We also need to work out the kinks with the teacher's assistant, teacher and communication.
I honestly think that our home was blessed over the Christmas holidays having my family here. Once again Brian Doerksen's CD, Today, was played over and over again. Tears flowed, hearts healed and relationships were restored. Kourtney loved having her uncles, aunties and grandparents close at hand to keep her social skills optimum. Shaelyn played nonstop with her cousin Wyatt, and Maguire enjoyed watching the activity.
We are still waiting to find out when Kourtney will need to have her esophagus opened up. The gastroenterologist really felt that she should have it done as it really hasn't been good since November. Kourtney still loves to eat although we have had to restrict some of her favourites. We are still praying for a miracle for her esophagus. We would love to give the glory to God and give the gastroenterologist something to get his head around as he nears retirement (in other words he has been really ornery with us and think he has been doing this for so many years he has lost his heart).
We also shared in our Sunday School open session (Discoveryland grade 1-5) about Kourtney and Shaelyn. We told them what happened with Shaelyn but also told them that the biggest miracle of all is what God has done in Kourtney's heart through all trials she has been through. There were many children at each service. We were glad to share with the children and really enjoyed doing it.
We are off to disneyland in March during spring break. Todd's parents will be coming with us. We are very excited. I have never been before so I am thrilled. I have been hearing that children in wheelchairs get to go to the front of the line . . . that will be nice.
Please continue to pray for Kourtney's health, her esophagus and her continued wonderful undaunting spirit.
We give the praise to God for one great month. Thanks for your prayers.
Janelle
Tuesday, January 4, 2005
Kourtney's Update (Christmas)
I realize this is a Christmas letter, but I couldn’t write without really telling you where my heart is at.
The word discouragement has seemed to plague us this past year. We have battled skin infections, viral infections and blisters in her esophagus that cause extreme pain and an inability to swallow.
In the last six weeks we have had some very serious events happen with Kourtney. Without going into a lot of detail, we have noticed Kourtney’s skin and general physical condition spiral downward. We are unsure why things have changed so much, even since October. We are praying for wisdom and guidance in trying to figure out how we can ease things up a little for her in her daily routine.
In all honesty, I feel like I am fighting a losing battle with her skin. Todd and I feel so helpless when it comes to looking after her. It becomes a vicious battle because Todd and I are stressed, then Kourtney is stressed, she takes it out on her skin and that we get even more stressed.
It is also very difficult to find the balance for Kourtney; her healthy mind is trapped inside an unhealthy body. We can’t let it stop her from being involved with regular 7 year old activities, but yet the damage to her skin is irreversible.,
Kourtney’s spirits can uplift anyone who walks into the house. She seems undaunted by the disease that has invaded her body. Kourtney does not know anything different, but there is not a day that goes by that she expresses her pain. What do you want for Christmas Kourtney? “A new body,” she replies.
Kourtney’s love for music still remains. Watching her lead worship for her peers is truly cute and amazing to see. She is confident and looks forward to the weekends when she sings at church.
Specific Prayer Requests
That Kourtney could have a new body . . . that God would heal her!!!!
For Todd and I . . . patience, peace and protection of our marriage.
We can’t forget Shaelyn either. I know that siblings of special needs children suffer also. Shaelyn has become very needy and expects us to treat her like Kourtney. She also is a very bright light in our family and makes us laugh a lot.
We are also trying to figure out if we will cut back her days of school or hours of school. We think school is too overwhelming for her body but yet the social stimulation is great and provides the opportunity for me to have a bit of a break from Kourtney. Academically Kourtney breezes through all her work.
Pray also that Todd could find a job right in Abbotsford (he commutes 40 minutes each way every day). We would love to have him closer.
We hope that this year you will take our family on in daily prayer as the battle seems more spiritual than anything. We know that God has done great things through Kourtney and will continue to do more, but Satan is a discourager and likes to see us in the pit. We pray for Peace amidst the storm and that we will continue to hold our heads high as we care for Kourtney.
In anticipation of what God is going to do,
The Kujawas
The word discouragement has seemed to plague us this past year. We have battled skin infections, viral infections and blisters in her esophagus that cause extreme pain and an inability to swallow.
In the last six weeks we have had some very serious events happen with Kourtney. Without going into a lot of detail, we have noticed Kourtney’s skin and general physical condition spiral downward. We are unsure why things have changed so much, even since October. We are praying for wisdom and guidance in trying to figure out how we can ease things up a little for her in her daily routine.
In all honesty, I feel like I am fighting a losing battle with her skin. Todd and I feel so helpless when it comes to looking after her. It becomes a vicious battle because Todd and I are stressed, then Kourtney is stressed, she takes it out on her skin and that we get even more stressed.
It is also very difficult to find the balance for Kourtney; her healthy mind is trapped inside an unhealthy body. We can’t let it stop her from being involved with regular 7 year old activities, but yet the damage to her skin is irreversible.,
Kourtney’s spirits can uplift anyone who walks into the house. She seems undaunted by the disease that has invaded her body. Kourtney does not know anything different, but there is not a day that goes by that she expresses her pain. What do you want for Christmas Kourtney? “A new body,” she replies.
Kourtney’s love for music still remains. Watching her lead worship for her peers is truly cute and amazing to see. She is confident and looks forward to the weekends when she sings at church.
Specific Prayer Requests
That Kourtney could have a new body . . . that God would heal her!!!!
For Todd and I . . . patience, peace and protection of our marriage.
We can’t forget Shaelyn either. I know that siblings of special needs children suffer also. Shaelyn has become very needy and expects us to treat her like Kourtney. She also is a very bright light in our family and makes us laugh a lot.
We are also trying to figure out if we will cut back her days of school or hours of school. We think school is too overwhelming for her body but yet the social stimulation is great and provides the opportunity for me to have a bit of a break from Kourtney. Academically Kourtney breezes through all her work.
Pray also that Todd could find a job right in Abbotsford (he commutes 40 minutes each way every day). We would love to have him closer.
We hope that this year you will take our family on in daily prayer as the battle seems more spiritual than anything. We know that God has done great things through Kourtney and will continue to do more, but Satan is a discourager and likes to see us in the pit. We pray for Peace amidst the storm and that we will continue to hold our heads high as we care for Kourtney.
In anticipation of what God is going to do,
The Kujawas
Shaelyn's Update (2004 in review)
This year, my mom gave me the responsibility of being the Editor in Chief. At 3 years and 9 months of age I feel excited about giving you the rundown of the events that have shaped our past year. My mom says this year has been a year of growth for our family. Our motto this year is from Joshua 24:15, “. . . as for me and my house, we will serve the Lord.” The words of Brian Doerksen’s CD “Today” have touched our hearts and lives. We are praying that through the hustle and bustle of Christmas you will take time to reflect how your family can serve the Lord in the year to come. We want to share our personal growth chart with you.
My Sister (Kourtney)
My sister has grown so much this year. I seem to have a new wardrobe every week as I inherit a lot of her clothes. Kourtney loves to read and is reading well beyond the grade 2 level . I benefit greatly from this because she loves reading to me. She is my bestest friend although she can be very bossy. We love to sing and dance together and chase each other around the house. My mom says I am probably the only one who treats her normally, which I think means I don’t let her get away with a lot.
Me (Shaelyn)
I know have achieved big girl status as I reluctantly gave up my soother. I taught myself how to swim and am able to jump into the deep water without anyone catching me. I love to draw and paint pictures and Kourtney is teaching me my alphabet. At last I don’t suffer separation anxiety when my parents leave me at Sunday School. Last but not least, my hair has grown thick, curly, and blonde, but still short.
My Mom (Janelle)
My mom’s organizational skills grew as she filled in for the head nurse at the dialysis unit this summer. She has also signed up to be a consultant for Mary Kay cosmetics. Mom loves having fun with makeup and even tries stuff on Kourtney and I. (My dad even takes samples of lipstick and hand lotion to school. He really thinks a pink SUV would suit him well.) My mom still loves running on her treadmill if she can’t get outside for a run. She seems to smile more after a workout. I just can’t imagine being that sweaty and feeling good after.
My Dad (Todd)
My dad completed his post graduate degree in June. He grew in his knowledge of computers and also his pay cheque (more Polly Pockets for me). My dad continues to hone his home renovation skills as he finished the kitchen cabinets and countertops, installed laminate flooring, knocked out a wall to make room for French doors, did electrical work, and designed and installed a new rail around the stairs. They say renovations are never done, but I think in my dad’s mind they might be. My mom has been banned from home reno shows as it gives her too many new ideas.
My mom, dad and Kourtney are leading worship in the Sunday School Open session. They do 3 weekend services every 3 weeks. I sometimes rush the stage when they are up there, but this last week I was too close to the monitor. I ran off the stage with my hands over my ears screaming, “It is too loud!” I can hardly wait until I am old enough to help out.
We have had visits from cousins Clarise, Nate, Wyatt and Maguire (who was inside Aunt Sharon’s tummy at the time). Of course their parents, Auntie Charlotte and Uncle Meldon, came with them. We also enjoyed a visit from Grandma Charlene and Grandpa Harold. We are looking forward to having a house full of Lutzer family members for Christmas this year. They will be in for a green Christmas this year as B.C. Christmas’s are typically mild.
We took a much needed family vacation, to Penticton this year. It was so hot we felt like we were in Hawaii. We spent most of our time in the swimming pool at the hotel. We felt very relaxed after we were there.
We also had an enjoyable time on our annual trip to Sylvan Lake for a Lutzer Family Reunion. I really enjoyed being with my cousins.
Merry Christmas to all. I know this is going to be the greatest Christmas ever.
LOVE SHAELYN (for all the Kujawa’s)
My Sister (Kourtney)
My sister has grown so much this year. I seem to have a new wardrobe every week as I inherit a lot of her clothes. Kourtney loves to read and is reading well beyond the grade 2 level . I benefit greatly from this because she loves reading to me. She is my bestest friend although she can be very bossy. We love to sing and dance together and chase each other around the house. My mom says I am probably the only one who treats her normally, which I think means I don’t let her get away with a lot.
Me (Shaelyn)
I know have achieved big girl status as I reluctantly gave up my soother. I taught myself how to swim and am able to jump into the deep water without anyone catching me. I love to draw and paint pictures and Kourtney is teaching me my alphabet. At last I don’t suffer separation anxiety when my parents leave me at Sunday School. Last but not least, my hair has grown thick, curly, and blonde, but still short.
My Mom (Janelle)
My mom’s organizational skills grew as she filled in for the head nurse at the dialysis unit this summer. She has also signed up to be a consultant for Mary Kay cosmetics. Mom loves having fun with makeup and even tries stuff on Kourtney and I. (My dad even takes samples of lipstick and hand lotion to school. He really thinks a pink SUV would suit him well.) My mom still loves running on her treadmill if she can’t get outside for a run. She seems to smile more after a workout. I just can’t imagine being that sweaty and feeling good after.
My Dad (Todd)
My dad completed his post graduate degree in June. He grew in his knowledge of computers and also his pay cheque (more Polly Pockets for me). My dad continues to hone his home renovation skills as he finished the kitchen cabinets and countertops, installed laminate flooring, knocked out a wall to make room for French doors, did electrical work, and designed and installed a new rail around the stairs. They say renovations are never done, but I think in my dad’s mind they might be. My mom has been banned from home reno shows as it gives her too many new ideas.
My mom, dad and Kourtney are leading worship in the Sunday School Open session. They do 3 weekend services every 3 weeks. I sometimes rush the stage when they are up there, but this last week I was too close to the monitor. I ran off the stage with my hands over my ears screaming, “It is too loud!” I can hardly wait until I am old enough to help out.
We have had visits from cousins Clarise, Nate, Wyatt and Maguire (who was inside Aunt Sharon’s tummy at the time). Of course their parents, Auntie Charlotte and Uncle Meldon, came with them. We also enjoyed a visit from Grandma Charlene and Grandpa Harold. We are looking forward to having a house full of Lutzer family members for Christmas this year. They will be in for a green Christmas this year as B.C. Christmas’s are typically mild.
We took a much needed family vacation, to Penticton this year. It was so hot we felt like we were in Hawaii. We spent most of our time in the swimming pool at the hotel. We felt very relaxed after we were there.
We also had an enjoyable time on our annual trip to Sylvan Lake for a Lutzer Family Reunion. I really enjoyed being with my cousins.
Merry Christmas to all. I know this is going to be the greatest Christmas ever.
LOVE SHAELYN (for all the Kujawa’s)
Sunday, November 21, 2004
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.
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.
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