see yesterday's post for details!
Wednesday, April 11, 2012
Tuesday, April 10, 2012
We've been waiting SIX WEEKS...
............ for this moment!!!!!!!!!!!!!!!!!!!!
Check out this video!!!!
and this photo!!!
What do they have in common??
JACOB LIFTING UP JOCELYN!!
A VERY welcome sight after six weeks of weight restrictions.
Please celebrate with us!
And please also be thankful to God
for His mercy and grace and compassion that carries us and lifts us up!
Tuesday, April 3, 2012
Cardiology in the Young...
Today is a great day to tell you about a conference going on in London this week! It's called Cardiology in the Young. It is one of the premier annual international pediatric cardiac conferences in Europe.
Tomorrow afternoon (Wednesday early morning on our side of the world), Dr. Rodefeld will present his research at this conference. This will be excellent exposure for his new concept in how to surgically help kids with hearts like Jacob's. This talk will help increase interest and support for a radical new approach for kids that only have one pumping chamber in their hearts. It is a real privilege for Dr. Rodefeld to have been invited to present at this prestigious conference!
Isn't it amazing that Jacob gets to connect with Dr. Rodefeld and two aerospace engineers who are helping with this research?!!
Remember Ana & Yann that we met at Purdue? Although they spend hours each week and week after week in research on behalf of kids with single ventricles, Jacob is the first person they have met who only has one ventricle. I think it's pretty cool that they now have a real person to consider as they press forward in their research!
For background on Dr. Rodefeld, Ana, & Yann, please see March 2012 blog posts
On March 26, we got to visit Ana's lab at Purdue University. It was remarkable to see how many things she brings together in order to do very intricate research. The pictures below don't do justice to the many fascinating things she explained to us, but they do help us remember just how important people are who work behind the scenes! And how MUCH goes on behind the scenes in order for research to press forward. Yann helped us see how computer programs can run many trials of research to supply more data in a shorter time frame. Ana & Yann explained how many of the principles are the same as when they worked with aerospace engineering projects.
Ana & Yann work with Dr. Steve Frankel, a Purdue School of Engineering professor. While we were visiting Ana & Yann, Dr. Frankel was presenting the fluid dynamic aspects of this blood pump research at a conference in Israel.
Today it's good to revisit these exciting ideas. On an international note that could impact many kids and adults, please pray for Dr. Rodefeld as he presents tomorrow and that interest and funding will grow for this research.
On a very personal note, we continue to be blessed by the investment of the medical community that has brought so much life to Jacob. We also acknowledge that while there are very exciting and profoundly deep things about living with a single ventricle, there are also hard things about it.
In the midst of the exciting, the deep and the hard, we are very blessed that God has connected us with Dr. Rodefeld, Ana, & Yann. Thanks for praying for them today, too!
Thanks for continuing to pray for us as we reenter "normal." Jocelyn is doing great at school. She LOVED the Easter Bunny at school yesterday, which was good news since she was terrified by the Easter Bunny last year. Jacob is doing well back in school. His teachers are being kind and helping him to take one step at a time. He's such a smart and respectful student. We are proud of him. Tom and I are doing okay and getting our heads back in the international ministry (Lori) and connectivity (Tom) worlds. We can tell that we are all emotionally on empty though. We really do continue to need and covet your prayers. Thank you SO MUCH for loving us SO WELL! God continues to sustain and encourage and grow us through His Word, His presence, and through you! This journey is MUCH more than we could tackle without you and Him! Thank you!
Tomorrow afternoon (Wednesday early morning on our side of the world), Dr. Rodefeld will present his research at this conference. This will be excellent exposure for his new concept in how to surgically help kids with hearts like Jacob's. This talk will help increase interest and support for a radical new approach for kids that only have one pumping chamber in their hearts. It is a real privilege for Dr. Rodefeld to have been invited to present at this prestigious conference!
Isn't it amazing that Jacob gets to connect with Dr. Rodefeld and two aerospace engineers who are helping with this research?!!
Remember Ana & Yann that we met at Purdue? Although they spend hours each week and week after week in research on behalf of kids with single ventricles, Jacob is the first person they have met who only has one ventricle. I think it's pretty cool that they now have a real person to consider as they press forward in their research!
For background on Dr. Rodefeld, Ana, & Yann, please see March 2012 blog posts
- Fabulous End to a Fantastic Day
- New & Revolutionary Ideas.
On March 26, we got to visit Ana's lab at Purdue University. It was remarkable to see how many things she brings together in order to do very intricate research. The pictures below don't do justice to the many fascinating things she explained to us, but they do help us remember just how important people are who work behind the scenes! And how MUCH goes on behind the scenes in order for research to press forward. Yann helped us see how computer programs can run many trials of research to supply more data in a shorter time frame. Ana & Yann explained how many of the principles are the same as when they worked with aerospace engineering projects.
Ana & Yann work with Dr. Steve Frankel, a Purdue School of Engineering professor. While we were visiting Ana & Yann, Dr. Frankel was presenting the fluid dynamic aspects of this blood pump research at a conference in Israel.
Today it's good to revisit these exciting ideas. On an international note that could impact many kids and adults, please pray for Dr. Rodefeld as he presents tomorrow and that interest and funding will grow for this research.
On a very personal note, we continue to be blessed by the investment of the medical community that has brought so much life to Jacob. We also acknowledge that while there are very exciting and profoundly deep things about living with a single ventricle, there are also hard things about it.
In the midst of the exciting, the deep and the hard, we are very blessed that God has connected us with Dr. Rodefeld, Ana, & Yann. Thanks for praying for them today, too!
 |
| Ana talking us through the concepts of fluid dynamics |
 |
| Showing us the model TCPC (total cavopulmonary connection) she created for research |
 |
| Explaining how the lasers help to see how particles flow through the TCPC. This will help to see how the permanent pump will redirect blood flow from vena cavas to the lungs. |
 |
| Yann describing how his computer simulation reflects Ana's research |
 |
| New friends: Ana, Jacob, Yann |
Thanks for continuing to pray for us as we reenter "normal." Jocelyn is doing great at school. She LOVED the Easter Bunny at school yesterday, which was good news since she was terrified by the Easter Bunny last year. Jacob is doing well back in school. His teachers are being kind and helping him to take one step at a time. He's such a smart and respectful student. We are proud of him. Tom and I are doing okay and getting our heads back in the international ministry (Lori) and connectivity (Tom) worlds. We can tell that we are all emotionally on empty though. We really do continue to need and covet your prayers. Thank you SO MUCH for loving us SO WELL! God continues to sustain and encourage and grow us through His Word, His presence, and through you! This journey is MUCH more than we could tackle without you and Him! Thank you!
Sunday, April 1, 2012
The Blues
Tom nailed it at dinner... I think we all have a little case of the oh-my-gosh-tomorrow-is-almost-here blues!
We have been INCREDIBLY thankful to be home for several days before tomorrow hits. We desperately needed a bit of a break from the crazy intensity of the month of March.
One friend (thanks, Stephanie!) remarked that our March came in like a lion and went out like a lamb! She is exactly right! Actually 2012 came in pretty strong for us... Stephanie prayed for a chilled-out-"lamb-like" rest of the year! Yes, please, Lord!
Earlier today I thought I would spend some time posting some pictures and telling some stories from last week. My energy has plummetted this afternoon, so I guess that will have to wait AGAIN!!!
Tomorrow...
School... that will be a physical challenge as well as the challenge of connecting with his teachers and coming up with a plan to get caught up. Jacob has done well to tackle homework for one class. We think his pre-calc teacher will be surprised.
Please pray especially for Jacob as he makes and implements a plan to get caught up. He has six weeks before finals start.
This morning at church I realized that there are several interesting things about being uprooted and dropped into our Riley world for six weeks. (I say six weeks because the week before Jacob's surgery he felt LOUSY! He only went to one class each day that week, so it was really an extra week out of our normal lives. Then he went to school on Monday, February 27 and then we left for Indy and his surgery was on Thursday.)
That's all I have in me to ponder right now. Thanks again for continuing to pray for us. We are SO VERY BLESSED to know that you are continuing to appreciate the challenges we face as we step back into our "normal" lives!!! And as we fight a touch of the blues as we still continue to feel the impact of our March- even as April has sprung!
We have been INCREDIBLY thankful to be home for several days before tomorrow hits. We desperately needed a bit of a break from the crazy intensity of the month of March.
One friend (thanks, Stephanie!) remarked that our March came in like a lion and went out like a lamb! She is exactly right! Actually 2012 came in pretty strong for us... Stephanie prayed for a chilled-out-"lamb-like" rest of the year! Yes, please, Lord!
Earlier today I thought I would spend some time posting some pictures and telling some stories from last week. My energy has plummetted this afternoon, so I guess that will have to wait AGAIN!!!
Tomorrow...
- Jacob will go back to school.
- Tom and I will get our heads back into our jobs.
- Jocie will go to day care.
School... that will be a physical challenge as well as the challenge of connecting with his teachers and coming up with a plan to get caught up. Jacob has done well to tackle homework for one class. We think his pre-calc teacher will be surprised.
Please pray especially for Jacob as he makes and implements a plan to get caught up. He has six weeks before finals start.
This morning at church I realized that there are several interesting things about being uprooted and dropped into our Riley world for six weeks. (I say six weeks because the week before Jacob's surgery he felt LOUSY! He only went to one class each day that week, so it was really an extra week out of our normal lives. Then he went to school on Monday, February 27 and then we left for Indy and his surgery was on Thursday.)
- It's interesting to walk into a large group of people and know that many of them remember that something major happened in our family and they know they haven't seen us for awhile, but they don't really remember what the big major thing was.
- It's interesting to look across a crowd and realize that lots of people are probably facing big things that we don't know about.
- It's crazy wonderful to know that many people have walked with us step by step and know the ups and downs of our last month.
- It's interesting to see dear friends and know they know exactly what we have faced these last six weeks but we have missed six weeks of their lives.
- It's unfathomable to me that some people face things as intense as we did in March (and even more intense!) and they don't know and depend upon the stability that comes from trusting Jesus.
That's all I have in me to ponder right now. Thanks again for continuing to pray for us. We are SO VERY BLESSED to know that you are continuing to appreciate the challenges we face as we step back into our "normal" lives!!! And as we fight a touch of the blues as we still continue to feel the impact of our March- even as April has sprung!
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