The Year of Questions – Part 2

The first specialist that we were sent to was a member of the Genetics Department at the Medical College of Virginia. Dennis and I had actually met with them about a year earlier, when we had first found out that I was pregnant to discuss a history of cystic fibrosis in Dennis’ family as well as my history of congenital glaucoma. Though the gene that carries the cystic fibrosis mutation had not yet been discovered, we had been given some interesting probabilities and some good advice which led to having my ophthalmologist at the hospital to give Ben his very first eye exam at the age of one day.

This meeting was much more serious because of our desperate need for answers. On our initial visit they did an extensive examination of Ben, both physical and intellectual. Significant delay was noted in both areas, but they were unable to identify a syndrome. We agreed that they should see Ben a few times over the next few months to track his progress while they tried to determine how to come up with a diagnosis so we could finally start prognosticating Ben’s future. They recommended a referal for physical therapy services to work on Ben’s muscle tone. Next stop; Children’s Hospital.

I feel quite fortunate that we were in Richmond during this period in our lives. The specialists and facilities at MCV, Children’s Hospital and the Cerebral Palsy Center were some of the best the east coast had to offer. I can’t imagine how we would have been able to get Ben to all of the appointments had we not lived literally down the street from everything.

Our first visit to Children’s Hospital came when Ben was six months old. At this time he still had very low muscle tone. He could hold his head up but had no control to move from side to side. He had no strength in his trunk, so he still could not sit up without support. When lifted onto his feet, he made no attempts at bouncing or extending against gravity. In all, the assessment put his developmental age at about 3.5 months. They made it very clear to us that since we had as of yet no diagnosis, which would have given us a better idea of his future prospects, it was very important that we begin gross motor stimulation as soon as possible.

Over the next few months Ben began to make very good progress in his overall strength due to his physical therapy sessions. His head control became much stronger and he actually began to bounce a bit in the hanging jumper. However, even at almost one year of age he was a long way from crawling, much less walking. In fact, he did not start rolling over until he was about nine months old.

The story of Ben’s first rollover is one neither Dennis or I will ever forget. We were on our yearly vacation at the beach with my family. It was the last day and everyone was diligently trying to get everything packed before the long drive home. Since Ben wasn’t rolling over, we normally just laid him in the middle of the bed with rolled up towels on each side. In our haste to pack one of us obviously forgot to put one of the towels in place

. At one point I walked into the room and noticed Ben wasn’t in the bed. I walked around the condo looking for the person who had taken him for one last hold and hug (Ben, like all babies, was quite popular that week with the family). However, no one had him! At this point both Dennis and I were beginning to panic. We walked back into the room for one last look before calling the police and that’s when we heard Ben’s little whimper. He had rolled off of the bed and underneath the twin bed next to it. Luckily the beds were close to the ground and the carpet was soft. What a time to learn how to roll over! You can be sure that it was a long time before we left him unattended on the bed.