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!
Tuesday, March 27, 2012
YIPPEEEEEEE......
We are VERY excited and BLESSED as we drive back to Evansville this afternoon.
We got to Riley early and it worked out great! Someone else had not shown up and they were able to get us in an hour early! First we had a great appointment with Dr. Hubbard. We also met Dr. Schamberger. Today at Jacob's appointment they "maximized his pacemaker." It was very interesting.
While Dr. Hubbard checked Jacob's pacemaker, Dr. Schamberger did an echo. We would be amiss if we didn't share the laugh that started this appointment. God creatively put Jacob's heart on the right side; the percentage of people with their hearts on the right is very small. It was just natural for Dr. Schamberger to put the echo wand on the left side of Jacob's chest. Apparently Jacob gave him a funny look when he put the gel on the left side of his chest, and Dr. Schamberger soon discovered why when he saw no heart on the monitor! Dr. Schamberger described the look on Jacob's face as "Got ya!" :) It's not the first time it happened... it won't be the last. Jacob is VERY creatively made!
It was very cool to watch how they did the test to maximize Jacob's pacemaker function. Dr. Hubbard changed settings on the pacemaker that caused a lag in how his two ventricular leads fired. Dr. Schamberger did the test that estimates cardiac output while Dr. Hubbard adjusted the pacemaker. Jacob's ventricular leads are on two sides of the bottom chamber of his heart. They tested up to 80 milliseconds between how they fired. Then they tested with one firing first and then the other firing first. They landed on the best heart function when they fire simultaneously. They are very pleased with how Jacob is doing. Although they said that the best test is all the walking we did yesterday without any shortness of breath. (see the post from this morning!)
Tom hung out with Jocelyn during this appointment. They went and saw the carousel horse by the emergency room and threw coins in, played on the playground, threw money in the "river" in the Riley atrium, and visited the gift shop. Unfortunately I forgot to fill in for Tom's role of taking pictures. So maybe we'll meet Dr. Schamberger another time for a picture. If you look back in the blog, we have various pictures of Dr. Hubbard from the stress test back in early February and other visits.
As we left the cardiopulmonary office area, Jacob and I got to see Lashaunna and Lauren from the metabolic stress test on February 8. It was an unexpected treat to get to see them on this end of our March Riley adventures. Lauren asked if we were gonna come back for another test so Jacob could see the difference in his numbers. I think we'll opt for posting a video for them of Jacob playing basketball with his friends or tennis with Chelsea! If you missed the metabolic stress test photos... go all the way back to the beginning of the Pics tab. Tom captured it well!
Lauren came up to see Jacob just after we got discharged from the first visit this month. Sorry we missed her then but so glad we got to see her today. After Dr. Hubbard saw the results of the metabolic stress test, she told us that it would probably be just a couple of weeks before surgery. Seeing Lashaunna & Lauren today was a sweet way to put a bow on this adventure.
After that we were blessed to go have some good laughs with Trina, Tracy, Gin, and Dr. Yancy... but that's for another post because the battery on Jacob's computer is about gone. So come back for more of the story and more photos!
We got to Riley early and it worked out great! Someone else had not shown up and they were able to get us in an hour early! First we had a great appointment with Dr. Hubbard. We also met Dr. Schamberger. Today at Jacob's appointment they "maximized his pacemaker." It was very interesting.
While Dr. Hubbard checked Jacob's pacemaker, Dr. Schamberger did an echo. We would be amiss if we didn't share the laugh that started this appointment. God creatively put Jacob's heart on the right side; the percentage of people with their hearts on the right is very small. It was just natural for Dr. Schamberger to put the echo wand on the left side of Jacob's chest. Apparently Jacob gave him a funny look when he put the gel on the left side of his chest, and Dr. Schamberger soon discovered why when he saw no heart on the monitor! Dr. Schamberger described the look on Jacob's face as "Got ya!" :) It's not the first time it happened... it won't be the last. Jacob is VERY creatively made!
It was very cool to watch how they did the test to maximize Jacob's pacemaker function. Dr. Hubbard changed settings on the pacemaker that caused a lag in how his two ventricular leads fired. Dr. Schamberger did the test that estimates cardiac output while Dr. Hubbard adjusted the pacemaker. Jacob's ventricular leads are on two sides of the bottom chamber of his heart. They tested up to 80 milliseconds between how they fired. Then they tested with one firing first and then the other firing first. They landed on the best heart function when they fire simultaneously. They are very pleased with how Jacob is doing. Although they said that the best test is all the walking we did yesterday without any shortness of breath. (see the post from this morning!)
Tom hung out with Jocelyn during this appointment. They went and saw the carousel horse by the emergency room and threw coins in, played on the playground, threw money in the "river" in the Riley atrium, and visited the gift shop. Unfortunately I forgot to fill in for Tom's role of taking pictures. So maybe we'll meet Dr. Schamberger another time for a picture. If you look back in the blog, we have various pictures of Dr. Hubbard from the stress test back in early February and other visits.
As we left the cardiopulmonary office area, Jacob and I got to see Lashaunna and Lauren from the metabolic stress test on February 8. It was an unexpected treat to get to see them on this end of our March Riley adventures. Lauren asked if we were gonna come back for another test so Jacob could see the difference in his numbers. I think we'll opt for posting a video for them of Jacob playing basketball with his friends or tennis with Chelsea! If you missed the metabolic stress test photos... go all the way back to the beginning of the Pics tab. Tom captured it well!
Lauren came up to see Jacob just after we got discharged from the first visit this month. Sorry we missed her then but so glad we got to see her today. After Dr. Hubbard saw the results of the metabolic stress test, she told us that it would probably be just a couple of weeks before surgery. Seeing Lashaunna & Lauren today was a sweet way to put a bow on this adventure.
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Lashaunna, Jacob, Lauren and Kristi
Metabolic Stress Test. February 8,2012
After that we were blessed to go have some good laughs with Trina, Tracy, Gin, and Dr. Yancy... but that's for another post because the battery on Jacob's computer is about gone. So come back for more of the story and more photos!
Fabulous End to Fantastic Day
Yesterday we had a great day at Purdue. We were surprised by many things... Don't know that I'll have time right now to write about all of them, but two big highlights even beyond what we discovered at the Biomedical Engineering School...
Purdue is BIG. We walked about 20 minutes between the buildings where we had appointments. So throughout the day we walked 20 minutes about three different times. The FANTASTIC part is that Jacob walked EASILY... it was FANTASTIC... it was phenomenal. It was SO ENCOURAGING... it was FUN!!
You can really only appreciate how FANTASTIC it is to walk that far with Jacob if you have followed us this last month. What a month March has been! And actually November-February weren't so easy either! November-February Jacob was incredibly limited in what he could do physically. In mid-October he got very short of breath and uncomfortable when we walked around the Evansville Zoo. That's when we first knew something was wrong.
Then this month has been all kinds of hard with two admissions to Riley. On Thursday this week, it will be four weeks since Jacob's big surgery. He still has two more weeks of weight restriction. He hasn't been able to play sports all month.
But yesterday walking around Purdue was FANTASTIC!!!
Okay... so right now we are driving to Riley for the next round of tests, so I only have a little bit longer before I need to stop typing for now.
Let me tell you about the FABULOUS part of yesterday. We got to meet Ana and Yann. They are French graduate students who got their masters degrees in Aerospace Engineering. Now Ana is working on her doctorate doing research on fluid dynamics for Dr. Rodefeld's permanent heart pump. Yann writes code to reproduce the results from Ana's testing so that other testing can be done. We have lots of pictures to show you, but for now we will tell you that this research is INCREDIBLY EXCITING. We LOVE getting to be on the front edge of seeing how a heart pump is developed. It's also INCREDIBLY INTRICATE work. Please pray for Ana and Yann and Dr. Frankel and Dr. Rodefeld and the others on the team; they need divine creativity and perseverance.
Jacob and many other kids and adults like him have half of a functioning heart. Jacob has had five heart surgeries to maximize his heart function but he still does not have a pump on the right side of his heart. This research could very possibly lead to a pump for the right side of the heart for people with only a single ventricle.
Even with all of this research on behalf of kids with single ventricles, Jacob is the first real live person that Ana and Yann have met with a single ventricle and subsequent Fontan circulation. Jacob "showed off" his scars from his five surgeries. We hope this will be an additional motivator for their research. We really enjoyed meeting them. We were blessed and hope we get to spend some more time with them sometime in the future.
Purdue is BIG. We walked about 20 minutes between the buildings where we had appointments. So throughout the day we walked 20 minutes about three different times. The FANTASTIC part is that Jacob walked EASILY... it was FANTASTIC... it was phenomenal. It was SO ENCOURAGING... it was FUN!!
You can really only appreciate how FANTASTIC it is to walk that far with Jacob if you have followed us this last month. What a month March has been! And actually November-February weren't so easy either! November-February Jacob was incredibly limited in what he could do physically. In mid-October he got very short of breath and uncomfortable when we walked around the Evansville Zoo. That's when we first knew something was wrong.
Then this month has been all kinds of hard with two admissions to Riley. On Thursday this week, it will be four weeks since Jacob's big surgery. He still has two more weeks of weight restriction. He hasn't been able to play sports all month.
But yesterday walking around Purdue was FANTASTIC!!!
Okay... so right now we are driving to Riley for the next round of tests, so I only have a little bit longer before I need to stop typing for now.
Let me tell you about the FABULOUS part of yesterday. We got to meet Ana and Yann. They are French graduate students who got their masters degrees in Aerospace Engineering. Now Ana is working on her doctorate doing research on fluid dynamics for Dr. Rodefeld's permanent heart pump. Yann writes code to reproduce the results from Ana's testing so that other testing can be done. We have lots of pictures to show you, but for now we will tell you that this research is INCREDIBLY EXCITING. We LOVE getting to be on the front edge of seeing how a heart pump is developed. It's also INCREDIBLY INTRICATE work. Please pray for Ana and Yann and Dr. Frankel and Dr. Rodefeld and the others on the team; they need divine creativity and perseverance.
Jacob and many other kids and adults like him have half of a functioning heart. Jacob has had five heart surgeries to maximize his heart function but he still does not have a pump on the right side of his heart. This research could very possibly lead to a pump for the right side of the heart for people with only a single ventricle.
Even with all of this research on behalf of kids with single ventricles, Jacob is the first real live person that Ana and Yann have met with a single ventricle and subsequent Fontan circulation. Jacob "showed off" his scars from his five surgeries. We hope this will be an additional motivator for their research. We really enjoyed meeting them. We were blessed and hope we get to spend some more time with them sometime in the future.
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| Ana, Jacob, Yann in Ana's lab at Purdue. March 26, 2012 |
Monday, March 26, 2012
A Big Day Ahead
Today is a big day. We are visiting Purdue with Jacob and Jocelyn stayed with NaNa & PawPaw.
Jacob has been interested in pursuing biomedical engineering in college since his project with Dr. Rodefeld on artificial hearts. That day in April 2011 is when we first heard about Dr. Rodefeld's research.
Today we will investigate Purdue. Because we were preoccupied most of the month of March, I just looked online about University tours last week. The regular tours of the university were full, but we still have a full day planned.
First at 1:30pm we will start with a tour of the Biomedical Engineering building. At 2:30pm we will go to an Engineering Information Session. After that we have a great opportunity to visit Ana Kerlo. Ana is a graduate student that works with Dr. Rodefeld on his research for kids and adults with Fontan circulations. Ana is from France and her parents are friends with Dr. Fontan. We don't really know what to expect at her lab, but that makes it exciting! We have seen a few pictures from Dr. Rodefeld. He showed us parts of the presentation that he gave in London in early 2011.
So... here we go... but just in case you are wondering... we are still IU fans! :)
Jacob has been interested in pursuing biomedical engineering in college since his project with Dr. Rodefeld on artificial hearts. That day in April 2011 is when we first heard about Dr. Rodefeld's research.
Today we will investigate Purdue. Because we were preoccupied most of the month of March, I just looked online about University tours last week. The regular tours of the university were full, but we still have a full day planned.
First at 1:30pm we will start with a tour of the Biomedical Engineering building. At 2:30pm we will go to an Engineering Information Session. After that we have a great opportunity to visit Ana Kerlo. Ana is a graduate student that works with Dr. Rodefeld on his research for kids and adults with Fontan circulations. Ana is from France and her parents are friends with Dr. Fontan. We don't really know what to expect at her lab, but that makes it exciting! We have seen a few pictures from Dr. Rodefeld. He showed us parts of the presentation that he gave in London in early 2011.
So... here we go... but just in case you are wondering... we are still IU fans! :)
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| Dr. Rodefeld, Jacob, & Ana in July 2011 |
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