Ryleigh Has PTLS & CMT:
At the moment of the accident, I put my hand on my belly and said “hold on baby”, I didn’t feel her move until we were in the ambulance and my only thoughts were of her. After what seemed like hours of X-rays, CT-Scans and other tests, I was hooked up to a fetal monitor and was able to hear her heart. Shortly after that, her heart rate dropped they found blood in my urine and I was whisked away for an emergency C-Section. Ryleigh Marie Sailing was born at 2:21, May 7th 2003 weighing 4 pounds, 4 ounces and was 17 inches long. When I finally was able to get down to the NICU to see her, I was face to face with the most beautiful, peaceful, sweet baby I’d ever seen.
The next day, I met the neurologist who told me that Ryleigh had suffered a subdural hematoma and had had a hard time breathing when she was born (my placenta had abrupted). The left side of her head was swollen and puffed out over the top of her ear but still she was so happy. It was hard for her to maintain her body temperature and she had a really weak suck reflex so she stayed in the NICU for a week before she could come up and stay in my room with me. We stayed in the hospital for a total of 2 ½ weeks and then I was home with lots and lots of help for the next 6-months.
She was late at hitting all her milestones, as a first time mom I was freaked out and by the time Ryleigh was six months, had thrown out every child development book in the house. It was apparent that Ryleigh was going to live her life on ‘Ryleigh Time’. And she has…she sat up at about 10-months, crawled at about 18-months, walked at two years, and was potty trained at 5.
As Ryleigh grew, she was never on the growth chart but was always on a steady path just below it, she aspirated formula and we had to thicken everything. She finally started eating solids at about 1 ½. She still has texture aversions to things like oatmeal and doesn’t like meat very much but for the most part isn’t any pickier than any other kid I know.
We’ve been very blessed to have wonderful care for Ryleigh, her pediatrician has been very proactive in making sure she gets to see the specialists she needs (including the one who was able assess Ryleigh and suggest genetic testing) beginning with…
*PT, OT and Speech with Birth to 3 starting at 3 months
*Pediatric Opthalmologist – Ryleigh has nystagmus (her eyes jump when she tries to focus and she needs to hold her head at a certain angle for it to be controlled) and she had lazy eye (6 ours a day patched for about a year)
*Pediatric Orthopedic Rehabilitation – started following her for low muscle tone and gross motor delays
*Developmental Pediatrician at the Waisman Center at UW-Madison. This is THE DOCTOR
mentioned above
*Ear, Nose and Throat – Ryleigh has a deviated septum from breaking her nose several times due to not being able to use her arms to break her falls
*Sleep specialist for sleep study – She only a little sleep apnea which appears to be due to her nose issues
*Neurologist – Monitors her reflexes, head size and general development (and now watches for of CMT)
All this was before we even dreamed she had anything other than a brain injury. The doctor at the Waisman Center suggested genetic testing (turns out she had some experience with a PTLS child prior to Ryleigh and recognized a similar look). Ryleigh was being sedated for an unrelated MRI and we had blood taken on September 11, 2008. I never expected that anything was wrong so when the geneticist called on October 8th, you could have knocked me over with a feather.
I had always assumed all of her problems were due to her brain injury (and some likely are), and while our car accident was the single most awful event of my life…in some way it allowed Ryleigh to get all the therapy and attention she needed until we could get a definitive diagnosis. She had been getting early intervention from just about as early as possible, swimming to increase muscle strength, equine therapy to enhance her core strength and work on communication and graduated right from birth to three to early childhood in public school. I don’t think she’s ever NOT had an IEP.
We’ve come a long way. Ryleigh is now seven and is in a 1st grade classroom with typical kids and only gets pulled out for therapy and remedial reading and math. She is a chatter-box, reads pretty well and seems to be developing some math skills. Her social skills are very behind and she has a lot of problems with disruptive behavior and impulse control. The important part is that she is learning and she is thriving and she is HAPPY!! She is more comfortable in her own skin than anyone I know and she is strong and determined and persistent.
There’s not a day that goes by where she doesn’t make me smile and she knows exactly how to push my buttons so most days she also makes me give her the “Mom Face”
