January 2011
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
February 2009
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.
