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
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