Thursday, June 19, 2014
Sam Mayer Update
It has been a while since I have had time to blog. For those who are new to the blog, I share my journey with Sam, the good, the bad and the ugly. Sam is 13, he has Down syndrome, a brain injury, aphasia/apraxia, dysphagia, bilateral hearing loss, respiratory/immune issues and at the age of 10 we added hip dysplasia and Perthes. But none of that...all of those labels...describes the amazing little man I spend time with each day and in my eyes he is none of these things...he is just uniquely and perfectly...my Sam. Since his diagnosis of hip dysplasia and Perthes Sam has undergone 3 hip surgeries, including a double osteotomy and an external fixator for 4 months. The first surgery put him in a body brace for 7 weeks, the second was an external fixator (a huge halo device that was externally mounted but went through his skin, muscle and into his bones and required daily pin/medical care.) We have had a heck of a journey and 3 years of rehab. About 3 weeks ago Sam again lost 60% of his mobility. I noticed a change in his gait, his movement decreased and his right leg showed physical signs of weakness...and his right leg is his good leg. His left leg is the one with Perthes and is in a flexed position which causes him to walk on his tip toe on the left side. I have watched Perthes slowly destroy and twist Sam's perfect gait that we worked so hard to achieve after his brain injury had weakened his right side. But Sam and I don't give up...so I began the quest to figure out how to help Sam regain his mobility yet again. I have noticed that as Sam compensates his gait to accommodate his hip, his right ankle is pronating inward severely causing his knee and ankle to be out of alignment and twisting. His altered gait is also twisting his spine and causing his feet to change shape. Sooo...after checking to make sure the hips were stable I decided to work on finding someone who could help shore up his good leg so that we can hold on to his mobility and lack of pain for as long as possible. Sam's final option for his hip is a hip fusion or total hip replacement. Due to Sam's extreme flexibility and low tone he is not even considered a good candidate for a hip replacement. The hip fusion surgery would put him back into a body brace...this time for 4 months.
Today was one of those days that tested me...what have you learned from your life with Sam??? Sam continues to have mobility issues so upon referral from his pediatrician we went to see our third orthopedic surgeon. To say I dreaded seeing another surgeon would be an understatement. As we sat in the room awaiting his arrival the familiar doubts entered my mind but I pushed them aside and decided that I'm here for a reason, it is always good to get a fresh pair of eyes on a situation...so let's hear what he has to say. I had given the nurse Sam's hip x-rays because in my mind a doctor should know the whole picture, what is happening from head to toe that is causing the issue. I chuckled when she asked me why I had brought a hip x-ray in for a knee/ankle appointment? Hmmmm....could it be because I have always looked at my child as a whole, I don't piece him out, I don't only look at one area at a time but I observe his overall function. This observation is something Sam taught me. Sam doesn't express pain in words...he instead moves differently, moves less, or you notice a change in gait, in his stance, in his expression. You observe his frustration level, his breathing, his....just being. I believe this is a lost art in our medical fields. We think all information can be obtained through questions and speech...not so much with a child that has processing/speech issues. We rush through appointments to get more people in but at the same time as we rush...we miss crucial pieces of the puzzle. In my life with Sam so much is about time. Giving him time to process and answer, giving him time to complete his work/chores, giving him time to practice his speech even if he repeats things over and over and taking time to show him, teach him, talk to him...just be with him. I spend a great deal of my time observing Sam, how he moves, how he breathes, how he understands and I try to incorporate what I learn into how Sam and I interact. Some days...I fail, miserably...but I try to remember that my frustration can't come close to how frustrated Sam must feel when he speaks but people don't understand what he is saying, or he struggles to pull out the right words, or he is unable to convey what he is feeling or thinking, or he hears only a portion of what we say or worse yet when someone underestimates his understanding and ability, spending more time thinking about what he can't do instead of working with him to figure out how he can do it.
As we waited...Sam, the boy who perceives so much so well...knew I was nervous, knew I was worried how he would react to yet another doctor. He pinched me to get my attention and then proceeded to smile and make a face at me. I smiled and looked away...so he said "Uh Mama" and I turned to him playing with his eyelashes on one side and his finger in his nose on the other. I laughed and said "So you are willing to misbehave to get my attention." He laughed and said "Talk to me." So we talked about the classical music playing which I said was "Bach" and Sam said "No, not bad...pretty." We talked about the picture of the foot on the wall which I said showed the bones and muscles...and Sam quickly showed me his best Hulk Hogan pose. I asked him what he wanted to do when we were done at the doctor, he said "Go home (and smiled)...um McDonalds??...zoo...Daddy work and go to movie." I said "Woah, that's a lot for an afternoon." He said, "Good evening" which I interpreted as meaning we can do some in the evening too because he followed it with a smile and strong nod of his head. By the time the doctor walked in we were both smiling, laughing and ready for whatever might come our way.
The surgeon shook Sam's hand and I love when a doctor will talk to Sam first and then me. He examined Sam's ankles and knees and watched him walk back and forth. He agreed with my diagnosis and Sam's need for a possible ankle orthotic and knee brace. As he explained that Sam's posture and issues were extremely unique I only smiled...thinking to myself...you have no idea just how unique this little man is. Although he was not able to help me, he suggested another doctor and helped me put the last pieces of my thinking together...sometimes we meet people for the sole purpose of bringing us to the next level of our own problem solving. He confirmed that Sam needs someone who can work closely with him to design and fit him with orthotics and a brace that would fit him perfectly and would give Sam a sense of comfort or stability so that he would want to wear them. Sam is a perfect gauge of if something works or not. He has high sensory issues so he never wore a hat but when he wore a baseball hat with a bone conduction hearing aid on it he found out he could hear and understand better so he continued to wear the hat until his hearing improved and then he promptly handed it back to me after wearing it for 3 years. When we rechecked his hearing both ears had improved to the bottom of the normal range and a hearing aid was no longer needed.
Soooo....I need the guru of orthotics. Someone who is keen on observation, ready and willing to take on a challenge, thinks outside the box and can fit and alter an orthotic to Sam's twisted form. I need someone who understands movement, non verbal communication and has the patience of a saint. As I talked with the doctor, I had my Sam moment...the surgeon was talking about a doctor from Children's, someone we had seen before...and my mind...well my mind was remembering a conversation with a PT about a fellow PT that was unhappy with standard orthotics and went back to school to develop his own. I thanked the doctor, took the name and number of the doctor from Children's and then promptly called Sam's PT from the parking lot to get the name of the PT who just may be my knight in shining armor. Sam stayed quiet while I left the message and then when I put down my phone said "Okay, all done...about McDonalds???" I said "Sam, thank you for all you have taught me." Sam said "What the heck...over der...I see Culvers" and we both walked into Culvers laughing.
I love this crazy, tragic, awful, BEAUTIFUL life! Stay tuned for next Tuesday's adventure with the PT and custom orthotic fitting....oh joy!!