The Waiting Game

We recently returned from our trip out to Mayo clinic and I realized I haven’t updated our blog in a while. I will wait to update on what we learned at Mayo until we have our video appointment with Camden’s Mayo Neurologist in November. Until then I will continue with the road that has lead us here. 

My last post left off with Camden’s birth story and the post prior to that was our referral to genetics at the University of Michigan. To jog your memory we received our referral from Dr. Neil (Neurologist) on July 31st, 2015. Camden was almost 14 months old, not crawling, was now in Occupational Therapy in addition to Physical Therapy. The wait time to get into see a Geneticist at U of M is quite lengthy….5 months. 

Our appointment was schedule for December 29th, 2015. As you can imagine, this is a long time to wait when Neurology cannot find the cause for the delays and it had now been turned over to genetics. Even more difficult to wait when we were expecting baby number 2. What if it was genetic? Could we be in the same boat with number 2? Only time would tell.

In the meantime we continued on with therapies and follow up appointments. Oh….and this happened!

He crawled at 14 months!  This had to have been one of the most exciting days for us up until this point. The thoughts of ‘would he ever be mobile?’ dissipated. Ah, how amazing! Although not as smooth and seamless as most first crawls, I have to say that Camden reaching milestones are far more rewarding than a typical child and that is a feeling that is unexplainable.

As I look back at all of Camden’s appointments during this time it is interesting to see how much I forgot. Camden was referred for speech therapy at 15 months and began weekly speech appointments in addition to OT and PT. We were at the Pediatric Therapy Center in Ann Arbor 3 times per week. Working these visits in to our everyday work and life schedule became quite cumbersome and we knew we needed to make a change.

In September of 2015 we FINALLY moved into our house (remember we were building?, yeah we want to forget that too 😉). 

This was obviously great for a number of reasons. We were able to keep Camden home with one on one care during the day when we were at work. We knew having someone at home working with him on everything he had been working on in therapy would help him improve even more. I also resigned from my job that I had been at for 9+ years and took a new job with a smaller territory that was closer to home. It took me 30 minutes to get into the start of my territory at my previous job.

With all of the excitement of moving into the house, starting a new job, expecting a baby and shuffling therapy schedules time flew by and soon it was December 29th, 2015…..time for our long awaited genetics appointment.

We were back up on Floor 6 Reception C of C.S. Mott Children’s Hospital. We went through the same routine we had done before. When Dr. Innis (Geneticist) walked into the room he knew he had to win Camden over. Camden had become very reluctant and I would even go so far as to say petrified of all medical professionals at this point. Dr. Innis spent over an hour with us observing Camden and asking a plethora of questions about his development and gaining an extensive family history. My Mom was along for the ride which was great to have her input as well. 

Upon the conclusion of his exam he stated that he would like to do a chromosomal microarray genetic blood test on Camden. This would detect extra or missing segments of genetic material of DNA. Dr. Innis stated that he thought that this test would most likely come back ‘typical’ and that we would need to do further and much more in depth genetic testing to get to the bottom of little Camden MacMillan. He also stated that he had a few syndromes in mind after observing Camden. I’m not sure why but at the time this didn’t worry me. This seems to be the theme as I look back on this journey; I always believed in my gut that Camden was different, he was special, and it was going to take a lot more to figure this guy out.

Until Next Time,
3C’s and a K