We were so excited when we found out we were pregnant with our first child!
On Tuesday, October 5th, 2010, Brayden Richard was born via c-section at 11:33 am. He came out screaming and hasn’t stopped talking since.
After his 2nd appointment with the pediatrician we were off to the local children’s hospital for testing when Brayden was 10 days old. He was having troubles keeping food down and I was breastfeeding at the time. He was diagnosed with reflux. We ended up seeing a gastroenterologist and had a couple more tests run to make sure there was not anything else wrong. Everything led us back to Brayden having reflux.
Being first time parents we were worried about our son getting enough nutrients after being diagnosed with reflux. Little did we know this was just the beginning of what was yet to come.
Between the age of 3 and 4 months old, Brayden has been in the hospital with bronchiolitis twice and was also diagnosed with torticollis. We were becoming very familiar where things were located at our local hospital. Our pediatrician recommended physical therapy so that’s what we did.
At 5-month’s old, we noticed a rib hump on his chest. We asked his pediatrician about it. He said it was probably extra cartilage and to monitor it for a few weeks. If it got worse we needed to call and he would get us in for an X-ray. It was not any better and seemed to be getting worse so we went for the X-ray. Our pediatrician called with the results and we were not prepared for what we were about to hear. Honestly, can anyone ever be prepared for hearing something is wrong with your child?
We got in to see the Pediatric Orthopedic Surgeon within a couple of weeks. He confirmed the diagnosis of Progressive Infantile Scoliosis (PIS). He had convinced us that in a lot of cases, this corrects itself and to continue physical therapy and come back in 4 months and have x-rays taken again. You know…the watch and wait game? So we played it because we did not know any better and trusted our doctor. He seemed to be doing better at 10 months when x-rays were taken. He said we need to wait until Brayden is walking to get a “true” reading on the x-ray and this would give a better idea if his PIS was correcting itself or getting worse. So we continued physical therapy and played the watch and wait game again.
Brayden began to walk at 12 months old and at 14-months old, we had x-rays taken again. We definitely were not prepared for what we were about to hear. The physical therapy prescribed was not helping Brayden and his curve was now at 42 degrees. The doctor recommended casting but had only had one other case that was casted in a Risser cast as he was not familiar with Early Treatment with Mehta’s specialized EDF casting techniques. Brayden’s doctor advised us to get an MRI to rule out any other issues that may be causing his PIS. He also recommended that we get a second opinion. He was very helpful and answered all our questions.
Within a couple of weeks, Brayden had an MRI done. We were not anticipating anything to unusual to come from this but to confirm his PIS. Nope, we were wrong again. He did not have a chiari malformation yet but there was a possibility he could form one as there were signs of this on his MRI. Luckily this was not anything to be worried about at the moment and was not causing any other issues at that time. The doctor recommended we do routine MRIs every so often to make sure it did not form into a chiari malformation.
After this news, we spent the next couple of days researching for other options for our son. We found the ISOP website and CAST infantile scoliosis Yahoo Group. Both of which were a HUGE resource for us getting the information we needed to make the best decision of treatment for our son.
We found a doctor at Cincinnati Children’s Hospital Medical Center (CCHMC) about 2 hours away from our home. He confirmed his curve was 42 degrees and said Brayden was a perfect candidate for the ET with Mehta’s specialized casting. We were able to get in for casting the next week. It only took him a short while to figure out how to get around with it on. He continued to sleep on his belly as he always had and nothing seemed to bother him.
Brayden is down from 42 degrees to 25 degrees and in his 5th cast currently. Although we miss allowing him have bubble baths, playing in the pool and the squishy hugs, we know that this is just a small sacrifice for improvement to his future health.
Recently, Brayden had another MRI on his brain and upper spine to check the possible chiari malformation. We had great news from his neurosurgeon. This has cleared itself up and there are no possible signs of any chiari malformation. Yeah! We were so excited about this for us and Brayden. We are getting there one step at a time. God is good! All the time!
The last couple of years have been bumpy but we have met many friends along this same path and together we will fight infantile scoliosis thanks to Heather and Dr. Mehta who have helped pave the way for us!
