Over a month ago, I wrote that we were preparing Kieran for a trip to the National Institutes of Health to participate in a research study that involved having MRIs done on his brain. We spent the week of June 23 in Bethesda, MD, for that study.
On our way out (we drove because Seth hates flying for various and sundry reasons), we stopped for a quick visit with some friends from my growing-up years. They were our neighbors for awhile and I have good memories of stopping by their house on my way home from the bus stop and having a snack of Muenster cheese. I also enjoyed seeing another friend who shared just about every school class with me from elementary to high school -- and we even did Bible quizzing together. But I forgot to get a picture with her!
We arrived at the hotel Sunday evening and met my parents, who had come to help with Cael while Seth and I were with Kieran at the NIH.
Monday afternoon, Seth, Kieran, and I caught the shuttle from our hotel to the NIH. In the weeks and days leading up to the trip, I tried to find a balance between explaining to Kieran what was coming and giving him too much information that would cause him to become anxious and obsess about it all. That day, we finally said, "Today's the day you get to go in the space shuttle!" We kept it light and happy and didn't allow him to focus on that by continuing the conversation with other things.
When we got to the NIH, we had to go through a security checkpoint by getting off the bus, having our bags scanned, and getting a quick background check. Kieran said hi to everyone in the security center and started asking a question that would become common the entire week, "Do you speak Spanish?" I have no idea where he got that from or why he started asking it, but one of the ladies there, said, "Yes, in fact I speak three languages--English, French, and Spanish." She was the guard who greeted our bus every day after that and every time she got on the bus and saw Kieran, she said, "Hey, there's my little buddy! How are doing? He makes me smile."
We were met at Building 10 by Lisa and Tiffany and Hillary--the researchers who would be conducting the scans the whole week. Right off the bat, they used "space" terminology with Kieran--he was going to the command center to see the spaceship and would get a visit from Astronaut Michael (who was really a doctor) later. It was to great to have them play along and I think it helped him feel more at ease and less anxious from the beginning.
After we got checked in, we visited one of their mock scanners, which the researchers had decorated with spaceship pictures and themes. I'd sent a link to my post about the scanner Seth built to one of the researchers to ask her if there was anything else major that we were missing that we needed to add to practice with and she had sent the link on to the others and had said they would be happy to run with the spaceship theme while we were there.
This is what I wrote on my Facebook page that day:
This is what I wrote on my Facebook page that day:
June 23 On the way to the NIH this afternoon . . . . When we got to security, he told everyone there he was there for the spaceship that would take pictures of his brain. And the researchers we met all very kindly played along with the spaceship theme the whole time we were with them.
Today was admissions day and he also got to see their mock scanner. He was anxious at first but Seth and I took a turn in it [and, to be honest, being in that small enclosed space was a bit much for me!] and then gradually got him to get into it. Once they turned on some videos for him to watch, he was calmer and stayed in there for a bit.
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One of the researchers was asking Kieran questions today to find out where he was cognitively. One of the questions was, "what kinds of things do you learn at school?" Kieran's answer, thanks to VBS last week was, "the one true God." :o)
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We spent about three hours there Monday afternoon. On Tuesday morning, we returned to the NIH to begin the real scanning.
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We spent about three hours there Monday afternoon. On Tuesday morning, we returned to the NIH to begin the real scanning.
While there, we met the chief researcher, Dr. Berman, who has been researching Williams syndrome for over 15 years. And, for those who enjoy the science-y part of this, here's the overview of the study.
Title
Defining the Brain Phenotype of Children with Williams Syndrome
Purpose
The purpose of this study is to investigate how the brain develops in healthy, typically developing children and adolescents and in those with a rare genetic illness called Williams syndrome. Your child's participation will help us learn more about how the brain develops in individuals with Williams syndrome.
Background
Little is known about how the brain changes during childhood and adolescence, how genes affect this process, or how the brains of people with Williams syndrome change during this period. While it is known that the genetic features of Williams syndrome affect the brain's development, the details of this process have not been studied over time. We will use magnetic resonance imaging (MRI) to take pictures of the brain and see how the brain changes as children grow.
And these are some articles about her research
One of her earlier papers (which is a precursor to the current study)
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I wrote this on my Facebook page on Tuesday:
June 24 Heading into the MRI scanner this afternoon . . . the techs had the spaceship theme going. He was anxious at first but he's settled down and not crying! He gets to watch The Little Engine that Could.
The door into the scanner
Checking out the equipment
(and examining the microphone, which he wanted to try)
with Hillary
Seth helping Kieran lay down and get comfortable
Seth and Tiffany talking Kieran through what was going on.
The blue thing at the bottom of the table is a weighted blanket
that we used a few times on Kieran's feet to keep him still.
Tuesday was a long day of scanning -- we were there from 12 to 4. Some of the scans they did were a series that consisted of maybe twelve 3-4 minute scans in order to get a complete picture of his brain. That meant he had to stay still for that entire time; if not, they had to start the entire series again. Seth and I took turns staying in the scanner room with Kieran, trying to keep him from moving his feet and arms and head and praying for him. The researchers stayed outside of the room, watching the monitors and setting up the scans. They were able to communicate with him through the headset Kieran was wearing.
He could watch movies via a mirror in the "space helmet" they put on his head to keep him still and enjoyed that. Each time he got up for a break, he got back on the table with more ease. The biggest thing he didn't like the entire week was having the ear plugs shoved into his ears.
I was amazed at how well he was doing and how quickly he adapted to being in the scanner.
June 24 When I asked for prayer that the Lord would give Kieran supernatural peace during this process--and when I prayed that way myself--I'm not sure what I was expecting. But I saw the answer today. Kieran was a bit concerned at the beginning but he settled down and did a great job of staying still for the rest of the afternoon. They were able to get really good pictures of his brain. God is a God of peace and I'm so thankful that He gives it to His image-bearers. Thanks for petitioning Him on our behalf!
He could watch movies via a mirror in the "space helmet" they put on his head to keep him still and enjoyed that. Each time he got up for a break, he got back on the table with more ease. The biggest thing he didn't like the entire week was having the ear plugs shoved into his ears.
I was amazed at how well he was doing and how quickly he adapted to being in the scanner.
June 24 When I asked for prayer that the Lord would give Kieran supernatural peace during this process--and when I prayed that way myself--I'm not sure what I was expecting. But I saw the answer today. Kieran was a bit concerned at the beginning but he settled down and did a great job of staying still for the rest of the afternoon. They were able to get really good pictures of his brain. God is a God of peace and I'm so thankful that He gives it to His image-bearers. Thanks for petitioning Him on our behalf!
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Tuesday evening, we visited with another family in the area whose daughter is Kieran's age and has Williams syndrome. We've been friends on Facebook for several years, so it was fun to meet in person finally. We enjoyed our time with them!
Tuesday evening, we visited with another family in the area whose daughter is Kieran's age and has Williams syndrome. We've been friends on Facebook for several years, so it was fun to meet in person finally. We enjoyed our time with them!
Photo courtesy of Erin Rupolo
Photo courtesy of Erin Rupolo
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We returned for more scans on Wednesday and were there, again, from 11-4. It was quite a hike in the NIH building from the lobby to the basement level where the scanner is. The building is HUGE. They have 5 MRI scanners, several PET scans and CAT scans, plus a host of various other labs doing various other things. Lisa told us that her roommates also work at the NIH in the tropical diseases and anthrax areas (and that she doesn't like it when they forget to leave their gloves at the office).
On our hike to the basement every day, of course Kieran said hi to everyone we passed and kept up his "Do you speak Spanish?" line of questioning.
June 25 Trying to get the wiggles out by exercising with Daddy before heading back into the scanner. When I told Kieran to get his wiggles out, he said, "Where are my wiggles?"
We returned for more scans on Wednesday and were there, again, from 11-4. It was quite a hike in the NIH building from the lobby to the basement level where the scanner is. The building is HUGE. They have 5 MRI scanners, several PET scans and CAT scans, plus a host of various other labs doing various other things. Lisa told us that her roommates also work at the NIH in the tropical diseases and anthrax areas (and that she doesn't like it when they forget to leave their gloves at the office).
On our hike to the basement every day, of course Kieran said hi to everyone we passed and kept up his "Do you speak Spanish?" line of questioning.
June 25 Trying to get the wiggles out by exercising with Daddy before heading back into the scanner. When I told Kieran to get his wiggles out, he said, "Where are my wiggles?"
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By Thursday, Kieran was looking forward to seeing the girls when we set off in the shuttle and was enjoying all the attention.
June 26 Kieran walked into the lab this morning and said, "Hi, I'm here for the spaceship!" He's been doing really well with getting into the scanner but not so well with staying still in there.
June 26 Kieran walked into the lab this morning and said, "Hi, I'm here for the spaceship!" He's been doing really well with getting into the scanner but not so well with staying still in there.
The screen outside the MRI scanner room showing
Kieran getting ready to lay down on the table
with his earphones on.
We were there from 9-12 that day and he was getting antsy about staying in the scanner. Because they had gotten most of the structural scans they needed, they had him play a game in the scanner so they could take pictures while he played. They showed him videos of individuals drinking from a straw and then making a face (happy, sad, upset, etc.) and he had to press a button after each one. The button-pressing was mainly to keep him awake since the "game" was kind of boring . . . and he did, in fact, almost fall asleep toward the end of it. (The purpose was to see which areas of his brain were more or less active during the different videos.) I was hoping they could just let him sleep and complete the rest of the scanning, but they were finished by that time for the day. Apparently, there are other "games" they do with kids as they get older but they involved a bit more coordination than he was ready for.
That afternoon, since we were free, we took the metro into DC to see the zoo.
The elephants were on the boys' "must see" list so that was our first stop.
It was very hot that day, so Cael took full advantage of the misters that were scattered throughout the park. Kieran had to be coaxed to get his head wet.
Friday was the last day we were scheduled to be there, and our time was supposed to be 12-8, which sounded daunting when they first told us about it. When we got there, Kieran was ready to work (and watch videos) and he did so well on the final scan that they didn't need to do any over again and we were able to leave by 1:30. All the researchers who had worked with him during the week came to say good-bye and to congratulate him on doing so well.
Astronaut Michael -- the doctor who had to take Kieran's blood pressure on Monday and witnessed the freak-out event -- told me that after that first day (because of the way Kieran acted with the BP cuff), he figured they probably wouldn't get much, if anything useful from him during the rest of the week and that he was amazingly and pleasantly surprised that Kieran did so well and that they got so much useful data from him. I think they were able to complete all the scans they needed to on him and have good results from him.
We don't get anything personally out of this research project, other than to find out that his brain structurally looks ok. This is mainly a research project that has implications for the future, the findings of which could possibly lead to suggested treatments for those with various learning disabilities. It's a "for the greater good of humanity" type of project. Kieran was compensated for his time and they also paid for our travel and lodging, which was nice for us.
June 27 He's finished with all the scanning! The researchers said they were able to get the scans they needed and that they thought he did a great job. He was one of the youngest they've scanned and who was able to stay in the scanner all week and give them what they needed. They were all impressed with Seth's mock scanner and said that the prep work we did with Kieran helped him to do well. I agree with them, but I also know that the calmness Kieran had was supernatural and definitely from his Creator. Thank you for joining us in prayer for him and now for joining us in praising the God of peace for His kindness to Kieran this week.
Astronaut Michael -- the doctor who had to take Kieran's blood pressure on Monday and witnessed the freak-out event -- told me that after that first day (because of the way Kieran acted with the BP cuff), he figured they probably wouldn't get much, if anything useful from him during the rest of the week and that he was amazingly and pleasantly surprised that Kieran did so well and that they got so much useful data from him. I think they were able to complete all the scans they needed to on him and have good results from him.
We don't get anything personally out of this research project, other than to find out that his brain structurally looks ok. This is mainly a research project that has implications for the future, the findings of which could possibly lead to suggested treatments for those with various learning disabilities. It's a "for the greater good of humanity" type of project. Kieran was compensated for his time and they also paid for our travel and lodging, which was nice for us.
June 27 He's finished with all the scanning! The researchers said they were able to get the scans they needed and that they thought he did a great job. He was one of the youngest they've scanned and who was able to stay in the scanner all week and give them what they needed. They were all impressed with Seth's mock scanner and said that the prep work we did with Kieran helped him to do well. I agree with them, but I also know that the calmness Kieran had was supernatural and definitely from his Creator. Thank you for joining us in prayer for him and now for joining us in praising the God of peace for His kindness to Kieran this week.
As for the results, they told us that the structural scans showed that there were no known abnormalities (such as Chiari 1 Malformation). The rest of the results are still to come as they continue scanning other children and follow Kieran over the years. This research has the potential to help form therapy suggestions for individuals with cognitive and intellectual disabilities in the future so we're glad for the opportunity to participate. :o)
A few days later, Lisa, one of the researchers sent me this picture with this note: I want to thank you so much for your family’s truly impressive commitment to this research. Kieran was exceptionally well-prepared, and we got impressive data for someone his age. I can only imagine what we will get in two years! Just for fun, I’m attaching a colored picture of Kieran’s brain.
On the way home, I asked Seth what we were going to do with the mock scanner he'd made. He said he already had plans for modifying it to make it even more realistic for when we return, in two years. Once again, I'll keep you posted on those results . . . . .
On a personal note, I was in awe of the ability to study God's handiwork so intricately. The human brain is truly an amazing product of careful design. It made me sad to hear Dr. Berman reference "nature's" role in shaping our brains -- as if random processes acting on chemicals could ever produce anything so finely tuned. And as if those purely material actions could bring about the immaterial thoughts, feelings, emotions, and morals that all humans share to some extent. And I wondered if she knew that the man who invented the very technology she was using -- Dr. Damadian -- believes in the God of the Bible who created us fearfully and wonderfully.
Even more, I'm thankful for everyone who has taken the time to ask me how it went after we returned and to rejoice with us over the great job the Lord enabled Kieran to do. I've been encouraged and blessed by every person who let us know in one way or another that they were praying for Kieran and thinking of him throughout that week. I know without a doubt that the Lord mercifully heard those prayers and answered by giving Kieran a peace that really did pass any understanding I had based on how he's acted in the past. Thanks for sharing this journey with us and for lifting our little guy (and us) up in prayer!
