Getting Real With Wanda Morrissey
Jeffrey is a toe walker. It has to do with being a preemie; he didn’t develop proper muscle tone in his calf muscles. The physiotherapist noticed it right away at our last appointment at the neonatal follow-up clinic. In an effort to correct the problem, he has to wear rigid orthotics (inserts) in his shoes. They limit his ability to bend his foot, forcing the calf muscles to stretch so he can walk on his entire foot. He got the inserts in June and has been wearing them since.
Just before Halloween, we went back to the follow-up clinic so the physiotherapist could check for improvement in the way Jeffrey walks. I told the physiotherapist that I thought Jeffrey was doing better except for when he’s excited or tired; if he’s tired or excited, he’s up on his toes. Then he wanted to see Jeffrey walking and, wouldn’t you know it, through the whole test Jeffrey was up on his toes.
The physiotherapist is looking at me like I lied to him and says, “Are you sure he’s wearing his orthotics?” His tone clearly conveyed that he didn’t think he was. I told him that, yes, he was, but what I really wanted to do was yell, “Of course, I’m sure. Why would I spend $400 on orthotics to correct my son’s gait and then not use them?” Then I mumbled something about Jeffrey being excited and wanting to play with the toys in the room. I got the ‘I don’t believe you’ look again. “Well,” says the physiotherapist, “it does take 1 to 3 years to correct the problem and Jeffrey’s only been wearing them a few months. But you know, if the inserts don’t work, he’ll need leg braces to correct the problem.”
He made the last sound like a threat, like if the inserts didn’t work, he’d know exactly who to blame.
Jeffrey wears those inserts everyday. He’s still going up on his toes when he’s tired or excited (I’m beginning to think this is more of a quirk or habit than anything else). We have an appointment to go back again in January, if Jeffrey toe walks at that appointment then I’m going to come home and videotape him walking properly so I can take it and show it to the physiotherapist.
I know Jeffrey is improving. How would it help Jeffrey if I was lying about it?
I believe you.
In my experiences, I have found that sometimes medical professionals just haven’t had the proper training or enough training in communicating effectively with families of their patients and that they could use more training in the area of palliative/comfort care.
It’s important for you to be recognized in your knowing exactly how Jeffrey, your son, is walking. Acknowledged in your efforts, and his, in Jeffrey using his orthotics. Commended for the work you do with him on a daily basis. Appreciated for your sharing your ideas about his improvement and his challenges so that Jeffrey’s therapy can be specialized to his needs and provide him with further physical benefits.
Francine, my sister, has special needs. Amongst the many things I do for Francine and the many parenting hats I also wear, I oversee her medical care. An entire medical team was changed, in order to obtain for Francine, and have her receive appropriate and excellent medical treatment for her medical condition. I needed professionals, an attentive and understanding medical team, who in addition to having expert medical knowledge knows how to communicate and openly converse with both Francine (their patient) and me(her sister, guardian, primary caregiver). She is seen by them at appointments, I know what is happening daily.
Your idea of taking videos of your son walking is a great idea. If you have them for his next appointment they could even be used in his behalf at therapy.
There’s something great to say for Mom’s instincts. Trust yours.
Andrea,
Thanks so much for sharing your insight. Wanda’s a fabulous mom, so I’m sure she’ll stand up to this doctor, but I agree with you that a videotape may help before the next appointment. Dave & I have found that the stronger we are as advocates for our own kids, the better they do – with doctors, teachers, and everyone else!
-Shadra