It's hard to believe that this March will mark 10 years since the Shannon Daley Memorial Fund helped our family come back from financial ruins. Life has changed so much for us from 2007 and now we are in the position to begin to be able to give back to those who helped us in our time of need.
Thomas is 11 years old and in the fifth grade at Montgomery Lower Middle School, Skillman. He is excelling in his academic program, while receiving some support for math and reading. In his spare time, he has taken up golf! He loves playing with his dad, Jesse, and brothers - Jonathan (16) and Nicholas (10). Last year, we traveled to Palm Springs, CA, where he played in the most beautiful location and even took a golf camp in August.
Unfortunately, Thomas' spina bifida diagnosis can be unpredictable. Last June, we found out that Thomas had tethered cord - a common complication in children and adults with spina bifida. He required surgery to remove the scar tissue that had attached to his spinal cord and was causing symptoms of numbness and tingling in his legs and feet. After a 5 (1/2) hour surgery, Thomas' spinal cord was detethered at 90% - the remaining 10% was too risky to remove as the scar tissue was too enmeshed with the spinal cord. He had a rare complication after the surgery, but happily bounced back after about a week. His total recovery time was three weeks.
After we thought we had the surgeries behind us, we learned in November that Thomas' left foot was again an issue. On Jan. 4, 2017, he had a surgery to realign his foot, transfer tendons, and shave down the bone that had become deformed as a result of his muscle imbalance. He is currently still recovering from this surgery and will have his cast removed a few weeks before the Shannon Daley basketball game in March. Only time will tell to see if the surgery was successful.
Despite his many challenges in life, Thomas is very healthy, and surprisingly, well-adjusted. He may have unexpected setbacks in the future, but he has an amazing support system behind him.
This year marks 9 years since we were a Shannon Daley family. It is hard to believe how far we have come since the day that I received a call from Paul McGill, offering a hope of help for our family. Since that time, much has happened, and we are happy to share our story with you.
Thomas will celebrate his 11th birthday this July. It's hard to believe he will be 11 and will be entering the Lower Middle School in Montgomery Township next year! Thomas is in excellent health at this time, but we know that he still faces challenges in the years to come.
Thomas was born with spina bifida, and as a result, he has many quality of life issues. He is on a successful bowel management program and self-catheterization schedule, which we help him with. Our goal is to have him move to independence with his toileting needs in the next two years, but we have a long way to go.
In the past two years, Thomas developed foot drop in his left foot, which at some point, we will need to address. For now, he is able to fully participate in all a 10-year-old boy's life has to offer. He has dabbled in baseball and soccer, but his current love is video games and playing online with his brother, Nicholas – whether it be Minecraft, or their newest obsession, Roblox.
Thomas was successfully moved into the mainstream classroom environment at his school this year after a lot of pushing by mom. We are pleased to report that Thomas is blossoming in his new classroom, and his teachers hope to move him out of extra-help sessions for next year. This is the most amazing news we have received in years.
Thomas continues to surprise and amaze us. He is growing into a kind, compassionate, intelligent young man. He has joined a mentoring program at school, where students are paired with other students who need additional supports in the classroom, or could benefit from more social opportunities. He is a great worker at school and a good friend – often embracing those who are "different" and helping them navigate the school environment.
Although we know we will face challenges in the future, we are grateful for the quiet moments we have had and the blessings that Thomas continues to have.
As for the other members of the May family, Kaitlin is a junior at Montgomery High School (MHS). She has had some wonderful experiences working with the autistic and developmentally disabled population. She was a Job Coach at Midland Adult Services in the Summer of 2015 and is continuing her work independently with another family. She also is looking into college options and career possibilities in a related field.
Jonathan is a sophomore at MHS, and has enjoyed time on the school's baseball and football teams. This past season, Jonathan was on the offensive line and saw some defensive plays on the JV squad. He is looking to improve his chances for a Varsity spot as a junior next year.
Nicholas is a fourth grader along with his brother, Thomas. He is doing well and is his brother's shadow. Thomas and Nicholas are truly the best of friends, and where one goes, the other follows.
Melissa has been working as a nurse for the past two years. Currently, she is a Staff Nurse at Carrier Clinic, Skillman, NJ.
Jesse continues his work as Chief Development Officer at the Savino Financial Group, Princeton, NJ.
As a family, we have come full circle. After many years of struggling, we bought a home again in Skillman and have been enjoying all the many benefits of home ownership. We continue on our pursuits for success and blessings for our family.
Thomas is doing great. Living with Spina Bifida is no walk in the park. The secondary conditions associated with this birth defect can be very challenging to monitor and deal with. Despite the scenario we were given seven years ago prior to his birth, Thomas has exceeded everyone's expectations.
This July, Thomas and I traveled to the Colorectal Center at Cincinnati Children's Hospital to take part in a weeklong Bowel Management Clinic for Thomas' incontinency issues. Because of the spinal defect and subsequent nerve damage caused by the spina bifida, Thomas has never maintained bladder or bowel continency his entire life. In many cases, and as we've been told by countless doctors over the years, without surgical intervention, complete continency could never be achieved.
Through the social networking site Facebook, I found the Colorectal Center and after several months of planning, we traveled there for our weeklong studies and treatment. What we found is that without surgery (right now), Thomas can be bowel continent through the administration of a daily enema. This was amazing news. After being told for so many years that complete continency could only be achieved through surgery, I was happy to learn this bowel management technique to save Thomas another trip to the OR.
I'm happy to report that we have 2 weeks of successful bowel management for Thomas. This hasn't been an exact science, and there have been many bumps in the road along the way, but the outcome has been amazing. We also are currently working to have Thomas dry (bladder continency) as well. This is a slower-going process, but I feel it's something that we can achieve in the near future.
The change in Thomas has been dramatic. He's feeling better, eating better, and looking better! We never knew what an impact this technique could make on his health, and are so very grateful to the folks at Cincinnati Children's for giving our son the confidence he needs and deserves to live a better quality of life.
Thomas will be starting first grade in the fall. We couldn't be happier and more grateful for his continued progress.
Last May, Thomas had a complete reconstruction of his left foot to correct a club foot, which developed over the period of several months. We went to Hospital for Special Surgery in Manhattan and stayed for two days while he recovered. He was in a cast up to his hip and wheelchair bound (a new adventure for him) for six weeks while he recovered.
In late June, Thomas had the cast removed and began physical therapy to regain the strength and ability to walk with a new foot. He progressed quicker than anyone could have imagined, and he surprised us all with how well he did, even his doctors! After a long summer of baseball and running around, Thomas was fully recovered and ready to tackle the new school year with his new-found freedom.
He is doing very well since the surgery, despite the fact that his foot has started to turn out slightly - a risk we knew was possible after the surgery. We are closely monitoring his foot and Thomas may require an additional surgery in the future to address the overcorrection in his foot.
Otherwise, Thomas is very stable. We are working on a bladder and bowel management program for him in anticipation of his starting kindergarten in the fall of 2011. This is a very slow process, and one that we have been working on for several years. Unfortunately, it is completely trial-and-error - we try things, they work for awhile, and then those methods stop working, forcing us to seek other alternatives.
All of the other May children are doing well. Kaitlin is a sixth grader at Readington Middle School, Jonathan is a fifth grader at Holland Brook School, and Nicholas is in the preschool class at Three Bridges School. Although Thomas and Nicholas are not in the same class, they do see each other frequently at school.
Finally, after some very difficult financial decisions, we moved to Readington Township in the summer of 2009. Everyone in the family adjusted very quickly, and we are grateful for all of the support of our family and friends in our transition.
2009 was a tumultuous time for the May family. It included a lot of new transitions - new home, new schools, and new friends. And one very unexpected event - a shunt revision for Thomas.
Thomas has been doing great. He is a preschooler at Three Bridges School, where he has been making great strides. This year, he was moved out of the prechool disabled program and was put into an inclusive preschool setting, where he is with children who have educational challenges and those who do not. He has acclimated well to his new school, and loves his teachers and classmates.
We've had a few health challenges, but nothing that isn't par for the course with spina bifida. We've sought out new specialists, had some luck, and then faced new challenges. On Dec. 5, Thomas began vomiting, and at first, we thought it was just a garden-variety stomach virus. But after four days of intermittent vomiting and headaches, we thought it could be more than just a bug. After some tests and two hospital stays, we learned that his shunt was failing. It would be a matter of time before it would stop working altogether, so we opted for the surgery.
On Dec. 11, Thomas went in for the shunt revision and came through with flying colors. He is back to "normal" and doing well, despite all that's he's been through. He's even gained 7 pounds since the surgery!
If there's one thing we've learned from our experiences with our son, it's that life can be very challenging and things can happen when you least expect it. The important thing is to cherish each day with your children and remember how quickly life can change in an instant.
Fortunately, we are living proof that prayers can be answered, and brain surgery (as strange as this may seem) can be relatively minor. Let's hope for a happy and healthy new year!
First day of school
Thomas May was born with spina bifida in 2005. Most children affected by this birth defect have varying degrees of paralysis, orthopedic issues, hydrocephalus (requiring shunt placement) and a host of other developmental issues.
Thomas is one of the lucky ones. He is able to walk, run, jump and do a variety of normal 3-year-old behaviors with some assistance. When our family was first found by the Shannon Daley Memorial Fund, Thomas was just a year old. He wasn't walking yet, and really wasn't talking either. On the day of our charity game, Thomas took his first unassisted steps and hasn't stopped since. We believe it was the positive energy and all of the other kids running around that night that inspired him to venture out on his own. He is truly a miracle.
Since our game in 2007, Thomas now attends the Preschool Disabled class at Clinton Public School. At school he receives physical therapy and occupational therapy, in addition to speech services. He is doing remarkably well after some initial adjustments in leaving Mom at the door each morning.
Despite a visible gait issue, Thomas is walking without the assistance of crutches or a walker. He does wear braces on his feet, which aid in supporting his weak ankles. Thomas also suffers from urinary and bowel incontinence, which we see specialists for to help in addressing these lifelong issues.
Even with all of his challenges, Thomas is a typical 3-year-old, who loves to play, sing, dance, and tease his older brother. He amazes us every day in what he can accomplish and how he handles his disability in stride. He is an inspiration to his family and everyone around him.
The Shannon Daley Fund was instrumental in helping us get back to a place where we could begin to help Thomas again without the added pressure of worrying about medical bills. Although things are still difficult for us, we have come to realize that the most important thing is having healthy children and a happy home. It is comforting to know that there are still people in this world who just want to help take away some of the burden.
Although we cannot walk in each other's shoes, it is good to know that we are all in this together.