We now know that it is not rejection, Sara is sick from a virus. This is great news! This morning was brought on by blood work, then rounds to discuss what's next, and an echo ultrasound on her heart. Sara is still quite grumpy, but hopefully she'll be feeling better today, her cough is worse, but her fever is gone. Hopefully Sara will be able to come off oxygen, she's on a small amount, but still relying on it. Once Sara's off oxygen and eating & drinking well then we will be able to go home!
It's been great seeing the staff & friends here, it's nice to have such excellent care & company! Thanks for praying for us, we feel well supported! God is good!
Aparently there are a few kids being listed or already listed for heart transplants, and a limited supply of hearts available. So please pray these families.
Thursday, July 11, 2013
Wednesday, July 10, 2013
fever, fluids, heart cath & recovery
Sara's fever came on fast, and since she wasn't drinking well we brought her in on Monday night. Since Monday night she's had bloodwork, IV fluids, medications, echo, ECGs, red blood cell transfusion, and a heart cath. Today the surgery went as planned, and she was in & out of the Cath Lab quickly. The two biopsy test results will be back tonight & tomorrow. Thanks for all your prayers, she is quite grumpy, but managing well. More news to come as we get it!
Tuesday, June 11, 2013
Spring 2013!
We're happy to share a few pictures, hope you enjoy!
Sara meets Rapunzel, has an Echo in the Transplant clinic, visits friends in the hospital and spends a day at the Glenrose for an assessment for the Pediatric Complex Therapies Program.
Concentration
Fun on Auntie Dawn's new swing set
Meeting "Hollywood", a new foal that belongs to friends
Loving the little calf at a local dairy
Checking out Dad's new machine - a Rayco C87FM XP Mulcher
We brought lunch out to Joel, he was running a Lam-trac mulcher for Big Bite Services.
Nothin' runs like a deere! Sara's gotta love for tractors...
Or maybe driving in general. Fun times with Shyrelle!
One day it snows...
the next it's spring again - only in Alberta!
Sara's bedroom changed into the new playroom!
Sharing a room, and excited about it!
Little bit of time at Brightwood Ranch
Here's our horizontal Bungee, we brought to Brightwood for friends to trying it out.
Easter dresses!
A new tradition, an Easter tea party with Paska and blackberries!
There have been great joys and great sorrows this last little while. We are grateful for what we have, and we pray for blessings on these families that are affected. Thanking the Lord for his goodness.
Wednesday, May 22, 2013
Broken-hearted
Our friends Shawn & Amy and Sadie have lost their baby girl; Hope passed away last night. This just floods my memory of all the little babies and kids we've known. It's sad to think that their life here has ended, but I'm reminded that it will begin in heaven with us one day. Praying for the families of Jack, Hope, Drayton, Isabelle, and Addison.
When we all get to Heaven
Lyrics by Eliza E. Hewitt, music by Emily D. Wilson
Sing the wondrous love of Jesus;
sing his mercy and his grace.
In mansions bright and blessed
he'll prepare for us a place.
Chorus:
When we all get to heaven,
what a day of rejoicing that will be!
When we all see Jesus,
we'll sing and shout the victory!
While we walk the pilgrim pathway,
clouds will overspread the sky;
but when travelling days are over,
not a shadow, not a sigh.
(Chorus)
Let us then be true and faithful.
trusting, serving everyday;
just on glimpse of Him in glory
will the toils of life repay.
(Chorus)
Onward to the prize before us!
Soon his beauty we'll behold;
soon the pearly gates will open;
we shall tread the streets of gold!
(Chorus)
Thank you Amy, for sharing your heart & thought with us, it is a joy to follow along and pray with you. We'll still be praying. Amy's entry is found on her blog: Mending Hearts and bending knees
When we all get to Heaven
Lyrics by Eliza E. Hewitt, music by Emily D. Wilson
Sing the wondrous love of Jesus;
sing his mercy and his grace.
In mansions bright and blessed
he'll prepare for us a place.
Chorus:
When we all get to heaven,
what a day of rejoicing that will be!
When we all see Jesus,
we'll sing and shout the victory!
While we walk the pilgrim pathway,
clouds will overspread the sky;
but when travelling days are over,
not a shadow, not a sigh.
(Chorus)
Let us then be true and faithful.
trusting, serving everyday;
just on glimpse of Him in glory
will the toils of life repay.
(Chorus)
Onward to the prize before us!
Soon his beauty we'll behold;
soon the pearly gates will open;
we shall tread the streets of gold!
(Chorus)
Thank you Amy, for sharing your heart & thought with us, it is a joy to follow along and pray with you. We'll still be praying. Amy's entry is found on her blog: Mending Hearts and bending knees
Tuesday, April 23, 2013
The Canadian National Transplant Research Program
Today our thoughts are on Organ donation, if it wasn't for a family's decision to donate a heart, Sara wouldn't be with us right now. It's because of the thoughtfulness of another family, in the midst of grief and pain, that a heart was given to our child. We are forever grateful.
Improving organ donation is just one of the projects the Canadian National transplant Research Program hope to improve. A grant for this program was announced yesterday, and it's lead by one of the U of A's own researcher Dr. Lori West. It was something our family wanted to be a part of when they invited us to speak to CBC news and CTV news.
CTV News Edmonton "National Transplant Program Led by Local Researcher" VIDEO
CBC News "Organ Transplant program expected to boost success rate" Article
CBC news The National - April 22, 2013 VIDEO
*You can skip ahead to 33:40 to see Sara, after all the commercials the segment with Sara will play.
We know a few families also waiting for transplants and we pray that the wait will not be too long, as we already know, some can't last the wait. Signing your health card, or signing up in your province's site and donating blood is all a step in the right direction. Hopefully soon a new way to match donors with recipients will be available across Canada. Like the poster above, you can check out the Projects and Core Platforms from The Canadian National Transplant Research Program website.
Hope you enjoy reading through the links and watching the videos!
Here is Sara's page from the Children's Miracle Network that the Stollery Children's Hospital put together back in March 2013.
Friday, April 12, 2013
Funny girl.
Our posts are less & less frequent, as we're spending more & more time outdoors! Even if this spring is bringing us snow, we're still loving it, and really enjoying the warm sunny days. We've even had some fun family times lately. So I'll be posting pictures soon, but here's an update anyway:
Joel & I were happy to have an evening together, it was so nice to get out! Thank you Uncle John & Auntie Dawn for taking us out! We had a great time at the fundraiser dinner & concert for Ross Haven Bible Camp.
Hailey and I are working on school when we can. Hopefully we'll get through the book work faster now that she's getting into it a little more. We were working on maps today, I wouldn't be surprised if one day she decides to travel! She loved learning about different places, and sometimes I have to convince her that what I'm telling her is true, as she questions everything!
Sara has been doing so well. Our biggest struggle has not been so bad, she's been needing a higher and higher does of Tacrolimus. They say this drug will plateau and she'll stabilize at a dose at some point here, but so far we've just been increasing slowly. Now this week's blood work showed that her Tac was over 20, and they want her tac level between 10-12! We were worried she was getting the flu, and here it was probably her tac level being too high. It can cause headaches, vomiting and diarrhea and Tuesday and today she was feeling sick. Please pray that her level will come down and that we can manage her tac level with blood work just once a week. That she'd start holding down food, and not flush it out! Sara is also back on the Anti-viral drug because her last blood test showed signs of the virus CMV, the treatment dose is double what the maintenance does was. So please pray that this CMV count will lower or be back to zero signs of it, an therefore not developing any infection.
Part of what made our evening was not worrying about my girls, they were in good hands! Thanks to the Quist family, they had so much fun! Sara hasn't been feeling well, but we were hopeful that she'd still be up for being babysat by the Quist's. While at a their place, she had a messy diaper, and a bath to clean her up. She was telling us all about it on the way home and we laughed and laughed! Her words were: "Then I saw carrots! I didn't know they got in my diaper! They crashed in my diaper, I ever, ever (never) seen carrots in my diaper, I didn't even know that!"
Funny girl.
Our time in the hospital picking up meds or going to transplant Clinic often ends up being visiting time with friends who are there. It's so good to catch up, we really miss our friends there and try to visit as often as possible. We're so thankful to keep in touch with many of these families, when they're in the hospital and when they're not! Some are not sure what decisions will be made as it is unclear how to help they're little ones and some are headed down the transplant road, whatever the outcome will be we trust that God will help them through. Please keep praying for Hope, Joel, Grayson (who received a new heart!!!), Caleb, Rylan, Precious, Alexis, Cohen, Muskaan, Racquena, Melissa, Hilda, Jace, Sheldon, Makenna, Connor, Colton, Kolby, Hannah, Kaiya, Harrison, Austin, and please include the families who lost these loved ones: Jack, Addison, Isabelle, Drayton and those who gave life back to my girl and others, through organ donation. God Bless you.
2 John 1:3 " Grace, mercy, and peace be with us, from God the Father and from Jesus Christ the Father's Son, in truth and love." ESV
Joel & I were happy to have an evening together, it was so nice to get out! Thank you Uncle John & Auntie Dawn for taking us out! We had a great time at the fundraiser dinner & concert for Ross Haven Bible Camp.
Hailey and I are working on school when we can. Hopefully we'll get through the book work faster now that she's getting into it a little more. We were working on maps today, I wouldn't be surprised if one day she decides to travel! She loved learning about different places, and sometimes I have to convince her that what I'm telling her is true, as she questions everything!
Sara has been doing so well. Our biggest struggle has not been so bad, she's been needing a higher and higher does of Tacrolimus. They say this drug will plateau and she'll stabilize at a dose at some point here, but so far we've just been increasing slowly. Now this week's blood work showed that her Tac was over 20, and they want her tac level between 10-12! We were worried she was getting the flu, and here it was probably her tac level being too high. It can cause headaches, vomiting and diarrhea and Tuesday and today she was feeling sick. Please pray that her level will come down and that we can manage her tac level with blood work just once a week. That she'd start holding down food, and not flush it out! Sara is also back on the Anti-viral drug because her last blood test showed signs of the virus CMV, the treatment dose is double what the maintenance does was. So please pray that this CMV count will lower or be back to zero signs of it, an therefore not developing any infection.
Part of what made our evening was not worrying about my girls, they were in good hands! Thanks to the Quist family, they had so much fun! Sara hasn't been feeling well, but we were hopeful that she'd still be up for being babysat by the Quist's. While at a their place, she had a messy diaper, and a bath to clean her up. She was telling us all about it on the way home and we laughed and laughed! Her words were: "Then I saw carrots! I didn't know they got in my diaper! They crashed in my diaper, I ever, ever (never) seen carrots in my diaper, I didn't even know that!"
Funny girl.
Our time in the hospital picking up meds or going to transplant Clinic often ends up being visiting time with friends who are there. It's so good to catch up, we really miss our friends there and try to visit as often as possible. We're so thankful to keep in touch with many of these families, when they're in the hospital and when they're not! Some are not sure what decisions will be made as it is unclear how to help they're little ones and some are headed down the transplant road, whatever the outcome will be we trust that God will help them through. Please keep praying for Hope, Joel, Grayson (who received a new heart!!!), Caleb, Rylan, Precious, Alexis, Cohen, Muskaan, Racquena, Melissa, Hilda, Jace, Sheldon, Makenna, Connor, Colton, Kolby, Hannah, Kaiya, Harrison, Austin, and please include the families who lost these loved ones: Jack, Addison, Isabelle, Drayton and those who gave life back to my girl and others, through organ donation. God Bless you.
2 John 1:3 " Grace, mercy, and peace be with us, from God the Father and from Jesus Christ the Father's Son, in truth and love." ESV
Wednesday, March 27, 2013
Beautiful sunshine
While out on a sunny winter's day with our horses, we found pussy willows! Now we're anxiously waiting for winter to end, but still enjoying the snow and warm weather like +14C! Even Sara's doing well, getting out a lot, and keeping up to her sister Hailey! Sara's med levels are doing much better, and she's also down to 11 meds! Now it's getting easier to cover the cost of her meds and thankfully as she improves she'll be on less & less medications. Now that we're out of the hospital it seems like there's more costs, like trips to the city, and parking, and meds. So we're glad Joel's back to work, and hope that his job brings him closer to home! Please pray that Sara will stay healthy, continue to grow and that her weight will come up! She also needs to be drinking more to keep up with fluids.
Here's an interview the Joel did in January on the Radio! Listen to the Radio INTERVIEW on CISN! It was great to be part of a fundraiser that raised 1.25 million for the Stollery Children's Hospital! Thank you!
Thankfully, because of the Stollery Children's hospital and the Ronald McDonald House, our stay there is a memory, and not todays reality. They made us comfortable in a very uncomfortable time. By supporting them you're supporting families like ours, and others like ours.
Please continue to pray for our friends in & out of the hospital - Joel, Muskaan, Rylan, Makenna, Grayson, Caleb, Alexis, Precious, Hope, Austin, Harrison, Sheldon, Kaiya, Cohen, Kolby, Hannah, Hilda, Melissa, Connor, and Colton. Also the families of Isabelle, Jack, Drayton and Addison who are grieving their precious little ones. May God keep you in His care.
Stollery Children's Hospital Foundation
Ronald McDonald House Northern Alberta
Here's an interview the Joel did in January on the Radio! Listen to the Radio INTERVIEW on CISN! It was great to be part of a fundraiser that raised 1.25 million for the Stollery Children's Hospital! Thank you!
Thankfully, because of the Stollery Children's hospital and the Ronald McDonald House, our stay there is a memory, and not todays reality. They made us comfortable in a very uncomfortable time. By supporting them you're supporting families like ours, and others like ours.
Please continue to pray for our friends in & out of the hospital - Joel, Muskaan, Rylan, Makenna, Grayson, Caleb, Alexis, Precious, Hope, Austin, Harrison, Sheldon, Kaiya, Cohen, Kolby, Hannah, Hilda, Melissa, Connor, and Colton. Also the families of Isabelle, Jack, Drayton and Addison who are grieving their precious little ones. May God keep you in His care.
Stollery Children's Hospital Foundation
Ronald McDonald House Northern Alberta
Tuesday, March 26, 2013
Our trip to Salmon Arm
We went to Salmon Arm to visit family last week for the funeral of my Uncle Larry Dyck, and to visit with the extended family that came. I was so glad to see many cousins, Aunts & Uncles. It's too bad it was such a sad and shocking death that brought us together, I hope it's a reunion or wedding that brings us together next time. I'm so thankful for the ministry my Uncle was a part of, as a pastor for 47 years, he touched may lives with the Gospel of Christ, and the hope that it brings in Jesus. He will be greatly missed by all that knew him. We love you Auntie Marilyn, Jeff, Jessica, Amelia, Simon, Paul, Janine, Josiah, Kailey, and Hunter, we're praying for you all.
It was so good to spend time in Grandma & Grandpa's new house! It was so fun for the kids to play hide-and-seek and roller blade in the basement with their cousins! Thanks for having us Mom & Dad!
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