Isn’t it magnificent to have a holiday that reminds us to count our blessings and focus on what matters in our lives. It is a day that unites us by the force of gratitude.
In the last update,we shared that Conrad had just undergone SPML (Selective Percutaneous Myofascial Lengthening). The minimally invasive procedure released tendons in his hips and legs to allow the muscle underneath to stretch and lengthen. We were so pleased with the results that we had Dr. Yngve perform the same procedure on his wrists. You may have noticed that Conrad’s wrists,fingers and arms had the tendency to curl inward. Only 2 months post,we have seen a marked difference in his range of motion. Most notable is his long beautiful fingers that now open and rest in a more natural position.
We are also making slow and steady gains on the research front. The team is currently analyzing the functional connectivity gathered from the MRI scans. This phase is just as much art as science. When comparing connectivity of kids with Anoxic Brain Damage to their typically developing “matches”,there are a lot of moving pieces. If they approach the analysis in the wrong way,they might get incomplete or even incorrect results. To make sure this doesn’t happen,they are doing the analysis multiple ways. Good news is that even at this very preliminary stage,it is apparent that MRI of ABI children can provide useable data about preserved cognition.
In parallel,I have enlisted partners to start working on the next phase of research –treatments/therapy targeted to the areas of the brain with the most potential to recover. Our partners come to us from the Child Neurology Foundation,an organization focusing on research and education related to pediatric neurology. We are developing the plan to recruit researchers interested in determining the best treatment options and start framing the next study. Progress is that for which we are thankful!
Those in San Antonio,please join us. Conrad and Conrad Smiles fund are being honored at La Cantera’s Holiday Mingle &Jingle. Conrad Smiles is a not for profit supporting research to improve the understanding and treatment of Anoxic Brain Injury. The event is next Thursday,December 5,6-9 p.m.,at The Shops at La Cantera,with 100% of proceeds from ticket sales benefiting Conrad Smiles. Learn more and purchase your tickets at:http://www.conradsmiles.com/holiday-mingle-jingle/ http://www.conradsmiles.com
Thank you,thank you,thank you. Specifically,I am grateful for you who:
- Share ideas and information that can help Conrad
- Hold belief in Conrad’s unlimited potential to recover
- Make our days brighter with your laughter and friendship
- Provide a shoulder (or glass of wine) when times seem tough
- Celebrate successes
- Stimulate Conrad
- Teach Conrad
- Use creativity to include Conrad
- Bolster faith
- Remind us that we are not alone in our journey
There is still half of summer left! We hope you enjoyed the first part. Here are a few highlights of ours. Thank you for your steadfast interest in and support of Conrad’s recovery.
The research study has officially moved to the analysis phase!
If you recall,the study utilizes a special type of brain imaging called resting state functional MRI. The approach involves comparing the brain images of a non fatal drowning survivor to that of a typically developing child who is the same gender and age. They have successfully scanned 11 “matched” pairs,2 more than they targeted. Thank you to the families who volunteered to be a part of this historic study,the FIRST research project to address brain injury in child non fatal drowning cases. Families brought their survivors from Colorado,New Jersey,Oregon,Utah,Wisconsin and throughout Texas. And thank you to San Antonio for providing all of their typically developing matches!
The research team can now use the images to analyze brain activity to better understand how the injured brain is “working” compared to a child without injury. The next milestone – stay tuned.
Hip Hip Hooray
Conrad had hip surgery a couple of years ago because his hip was dislocated. The fix did not stick and his hip came out again and was a source of extreme discomfort. We found a doctor in Houston,Dr. Yngve,who is pioneering an established procedure in a new way to address issues with children whose orthopedic issues are neurological in origin.
On June 27th ,he performed a procedure called SPML (Selective Percutaneous Myofascial Lengthening). He releases Selective tight bands of tendons called Myofascial, which allows the muscle underneath to stretch and Lengthen using small incisions (Percutaneous) versus large open scalpel cuts. So it is not very invasive and does not have a long recovery. You may recall the huge cast from his first surgery. After this procedure,Conrad only had to put up with some soft casting the first few weeks. Our first priority was to relieve the pain. However,his hip was limiting his movement. It is our equal hope that the procedure will help him to move more freely on his own. Conrad sailed through the procedure and we are very pleased with the results so far. www.utmb.edu/ortho/faculty/DYngve.htm
camp CAMP (Children’s Association for Maximum Potential)
Conrad enjoyed his second summer at camp CAMP,this time with Garrett in tow. This year Matt and I wasted no time. We embarked on our first real vacation together in over 9 years,enjoying a few fun and relaxing days in Guadalajara. Judging from the pictures,the boys did not seem to notice we were gone.
Last June I sung the praises of this camp. www.conradsmiles.com/2012/06/28-june-2012/
This year I will be sharing our families’ experiences as a speaker at the CAMP fundraising gala on Sept 7th. Please let me know if you are interested in supporting and/or attending.
Happy Birthday Conrad
Conrad turns 11 on July 24th. We celebrate the entire month,so if you are around stop by!
Over 44 years ago,Eunice Kennedy Shriver had a vision to help people with disabilities discover what they can do instead of dwelling on what they could not do. Her first step came in the form of a summer camp for young people in her own backyard. Her drive for opportunity eventually grew into the Special Olympics movement,now the world’s largest sports organization for children and adults with differing abilities,serving more than 4 million athletes in 170 countries.
Last Thursday,Conrad participated in the annual Special Olympics Field Day. Emma Matthews and Sam Hodgson were selected to attend based on their compassion and friendship with our Special Olympian. Emma and Sam have been a steadfast and encouraging presence in Conrad’s life since they met in first grade. I believe that if Ms. Shriver were alive today,she would feel pride that the honor was placed and so graciously received by these kids.
Many of Conrad’s peers use their creativity and hearts to include Conrad in activities. Their resourcefulness challenges me to continue to overturn the stones in the quest to help Conrad and other children like him to reach their maximum potential – no limits!
One step we have taken is to collaborate with an organization called Hope4JD (https://www.hope4jd.org) to develop the Nonfatal Drowning Registry and Network (www.nonfataldrowningregistry.org). The mission is to advance the understanding of anoxic brain injury and encourage development of treatments and interventions that promote a healthy and productive life for all people who survive a drowning accident. Our goal is to register ALL nonfatal drownings to help quantify the impact of the condition and give power to our voice.
Thank you Ms. Shriver for the demonstrating the power of taking a vision to reality. And thank you to all the people,young and old”er”,who bring joy and laughter to our journey.
Enjoy the photos!
Conrad was back at CAMP “Camp”for Spring Break. CAMP stands for Children’s Association for Maximum potential. You can refer to the June 28th update to read more of my praise for this organization and the volunteers they attract. I would like you to meet Abby:
Howdy,my name is Abby Dickerson and I’m 17 years old. I’m a junior at Lutheran High School. I’ve been volunteering with special needs kiddos and adults for roughly 7 years in varying capacities. I really have a passion for special needs. I worked at Camp CAMP for a few weeks this summer and loved it! I decided to go back for Spring Break this year and had the honor of being Conrad’s counselor! It was a fantastic 4 days!
Today is the anniversary of Conrad’s accident. 9 years and 53 “Conrad updates” later,we continue to celebrate his life and continued progress.
If you read/re-read our January posts from 2005-2012,you will notice a trend:
- Gratitude for his life (he was given only a 5% chance of survival)
- Celebration of the successes
- Intentions for the future
Some may wonder,how do we find the motivation to continue the same basic resolution year after year?
Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.
Although the steps have been small,the accomplishments are tangible. He is more alert and is interacting with his environment more noticeably and consistently. He has progressed so much further than we were told was possible and we are certain that his potential is unlimited.
Our assurance is fueled by the fact that there is still so much to learn about the brain. We plan to continue to push the confines that are bound by the lack of knowledge.
Last year we helped launch the first research project to assess anoxic brain injury in pediatric near drowning cases. Families have traveled from Utah,Oregon and Wisconsin to participate. This year we plan to build on the findings of this project to launch additional research and identify treatments/therapy targeted to the areas of the brain with the most potential to recover. We plan to partner with other organizations to expand our reach and unite efforts that will benefit Conrad and other near drowning victims. There are many families like ours who are defying odds and pushing boundaries.
This year we are also developing a consistent communication system for Conrad. He communicates with his family,caregivers,schoolmates using a variety of methods such as jesters,sounds,even voice “buttons” he pushes to activate. However,they are all different and those who are not as familiar with Conrad find it more difficult to interact with him and interpret his responses. We will help Conrad clearly indicate preferences and desires. We also want to test Conrad’s knowledge so we can more effectively teach and challenge him.
Thank you for your continued support. YOU,the friends and family that provide the ideas,words of encouragement and the cheers of progress bolster our efforts.
Who knows what we can accomplish in another 9 years. Thank you for sharing in our optimism.
The research study has begun!
Since we first announced the pending research study in our January update,the number 1 question has been:“When will it start?” We are so glad to now answer:“It Has!”
As a reminder,Dr. Peter Fox of the UT Health Science Center agreed to lead the FIRST research project to address brain injury in child near-drowning cases. Utilizing Resting State Functional Imaging,his team will analyze brain activity and patterns of connections to provide families information on the functional status of their child’s brain. The information will assist caregivers in management and treatment decisions and provide a more targeted approach to therapy. For more information,please visit our Research page http://www.conradsmiles.com/research/
Conrad was scanned on October 21st. Now the number 1 question is:“When will we get the results?”
Doctoral candidate Janessa Manning,who is managing the research study gives this answer:“Dr Fox took a variety of images of Conrad’s brain. We are playing with ways to analyze them to get the most useful information from the acquired data. However,until we know what a typically developing 10 year-old boy’s brain is doing,our ability to interpret the findings is pretty limited.”
This is because the research approach involves comparing brain images of near-drowning victims to those of typically developing children in gender and age matched “pairs”.
Sam,who you met in the last update,has agreed to be the age/gender match for Conrad. Thank you Sam. Sam’s scan is scheduled for mid November.
The study also requires multiple case analyses. We are targeting 9 gender/age matched “pairs” like Conrad and Sam. Currently we have one other signed up. The sooner we can recruit more near-drowning children to the study,the sooner the team will have sufficient data to form more solid conclusions. We are asking families of near-drowning children to contact Janessa at email@example.com if they are interested in participating,so please spread the word.
Then we can move to the next step – research related to the treatment.
Thank you to all who have followed throughout our journey. We still have along way to go but we have taken a huge step forward. Please take a moment celebrate with us.
Steve Spriester,KSAT news,captured Conrad’s scan and interviewed Dr. Fox. Here is the link to the story if you missed it: