It was our first time setting foot into The University of Michigan C.S. Mott Children’s Hospital on January 21st 2015. Camden was now 7 months old. The Pediatric Neurology Department is on the same floor as Pediatric Genetics. We didn’t realize it at the time but we were going to be spending a lot of time on Floor 6 Reception C. I do not wish visiting this area of the hospital on anyone; but to be honest what area of the hospital, with the exception of the maternity floor, is an exciting place to be? There are children and their guardians from all over the world sitting in the waiting room waiting to be seen with some of the rarest disorders. It really punches you in the gut and makes you realize the things in life that you struggle with really are minuscule compared to what these people have weighing on them day in and day out; but just like the rest of us, it is their ‘normal’.
We were called back, weighed in, and taken into a room to wait for Dr. Neil, Camden’s amazing Neurologist. Dr. Neil came in, introduced herself and started her extremely thorough examination. The exam included observation, discussion, and a physical examination. Upon the conclusion of her exam she stated that he had Positional Plagiocephaly (flat head), Delayed Visual Maturation, and Reflux. What was a huge relief to us at the time was that she didn’t think his muscle tone was a concern. She referred us to Physical Therapy and Ophthalmology to be evaluated, supported the Early On evaluation and said I’ll see you back in 3-4 months.
Shortly after our visit with Dr. Neil we had our Early On evaluation through the Plymouth/Canton Early On program. This was a one hour assessment on where Camden was in his physical development compared to his other 7-8 month old peers. To give you an idea of where he was physically, he rolled from front to back at 19 weeks, back to front at 22 weeks and sat up on his own just after the New Year which would make him 7 months old. This is all considered within typical development. With that being said, Early On determined he was not eligible for services. This was all good, right?
On February 26th 2015 we had our Physical Therapy evaluation. The therapist we saw that day was Mr. Dan; we didn’t know it at the time but Mr. Dan would become one of Camden’s biggest advocates and one of our biggest support systems. Seriously this man is ah-mazing! Mr. Dan determined that Camden’s Plagiocephaly was caused by Torticollis (crick in the neck). He recommended a helmet for Camden along with PT. “A helmet, are you kidding me?” This is what I was thinking as he was telling me this. It is funny to think back on what a devastating statement this was to me because in the end having your child wear a helmet is really not that big of a deal. What was terrible was the torticollis stretches we had to do at home which you can see me and Mr. Dan demonstrate in the pictures below.
We continued weekly therapy visits from that point forward; we are still in PT today but with a different therapist (more on that later). We went on March 23rd to be fitted for a helmet and he received that helmet on April 6th. The helmet was to be worn 24/7. The only exception was bath time.
You may be wondering about the Ophthalmology appointment…we went to that too. On March 18th we visited the Kellogg Eye Center at The University of Michigan and saw Dr. Gappy. I don’t want to downplay that appointment but it really didn’t provide any further information, it is just another piece to the puzzle. This will come more in to play at a later date, after all we didn’t need to go back for 6 months and to be honest that was too soon. Of all of our appointments this is my least favorite. The providers are great, it is just that you have to see 3 Dr.’s before you see ‘The” Dr. This happens when you are at a large University hospital. Keeping a small child entertained for that long through that many people is what makes it difficult.
At this point everyone is thinking that Camden is at worst ‘a little behind’, and now what has become my most dreaded statement ever, ‘will catch up’. What came when we visited Dr. Neil 4 months later is really what shook us to our core and began the stages of grief.
Until next time –
3 C’s and a K
3 comments on “Two Steps Forward One Step Back”
You are an incredible writer!!!! Thank you for sharing your story!!
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Sort of wish I wasn’t reading information about my family for the first time in podcast format. I am sad you guys felt like you had to go through all of this alone.
Me too, I’m with Kelly regarding your feeling that you were alone. . . many of us would have done anything you asked, even listened at any and all times…. Nevertheless, I’m glad to be learning from you now. Always better late than never as they say! ❤