Today Ellie got her first set of casts to commence the process of keeping her feet at neutral. I gave her some Motrin to try to stay ahead of any discomfort from having her feet twisted and bound into a permanent stretch. B came with us, which was great because it really took two people, one to hold Ellie’s leg to keep it in position and one to distract her. This worked very well. If I can guess what it felt like from Ellie’s perspective, she got to have Mama’s 100% attention and her favorite page of her favorite book read to her over and over again. Each word spelled out as she pointed to the letters. “W. H. O. apostrophe S. Who’s, meaning who is, That, T. H. A. T.” and so on. She was in heaven.
While the Mama show played Dr. Webster moved Ellie’s foot into position as R. wrapped the casting material around her foot up to her knee. During this B held Ellie’s leg. Ellie was mostly concerned with reading her books. She would look down when I would and when I would look back she would be smiling up at me or telling me to get on with the reading. After all, she was awake, right? Awake equal play at all moments. No down time from play is ever needed. I obliged.
The casts themselves are not the monstrosities I thought they would be. I had many casts as a kid for clubfeet and those casts were made of plaster and HEAVY. These casts were made of fiberglass and relatively light. The hardest part of the application was the cutting out of the toe, which made me nervous but ended with 10 toes intact. Her toes do look a little squished but that is because her feet are not at neutral this time around. The serial casting is such that it is supposed to minimize the pain. There should be no pain for Ellie after the first 24 hours. I will watch this closely.
For the rest of the day Ellie seemed to be unimpressed with her “fancy boots”. They are purple and have not impeded her movement. She did reach down at them while I was changing her diaper as if to say what’s up with that?
Other parents who may be lurking out there, answer me this: Is Parenthood a complete set up to make you feel, more often then you ever have before, like you don’t know what the hell you are doing?”
The conundrum is that you can stretch muscles yes – but you can’t stretch tendons. Stretching tendons only weakens them. Have you ever noticed that when you sprain your ankle that you tend to twist it more than you used to? That is because you have pulled and stretched the tendon leaving it forever that little bit weaker. The casting we are doing does not discriminate. We are stretching tendons as well as the muscles. If you have read some of my other posts you might recognize this situation as the classic picking of the lesser evil. On the one hand we do PT and stretches as we have been and Ellie’s feet become more and more clubbed ensuring she will never walk. And on the other hand we can inject her muscles with scary substances then cast and stretch out her tendons and muscles hoping that the integrity of her foot and ankle will allow her to bear weight on her legs and eventually walk or ambulate.
There is a path that I had hoped would have allowed me to avoid the lesser evil scenario. This road includes doing two hours of therapy on Ellie daily to increase the strength of her diaphragm. The technique we use is called the Scotson technique and you can read about it by clicking here. We have been doing this therapy with Ellie for over 2 years. It has been very successful at increasing her ability to breath and assimilate oxygen into her blood. It has also, through the use of air splints, relieved the spasticity in her hands – especially her left hand that was starting to curl over onto itself. If we miss a week of this therapy I see that hand start to get tight. There are many ways that this therapy is helping Ellie.
As promised by Linda Scotson and Co., this therapy builds up the diaphragm using gentle pressures in a rhythmic way. In doing so it the diaphragm is able to work harder signaling the body to build more blood and in turn build more capillaries. The entire circulatory system is improved. The theory postulates that by doing this, any plasticity that can be realized in the damage brain will be. I think this logic still holds very well. But when it came to Ellie’s ankles we are running out of time. The therapy works from the diaphragm out, the feet are the last to be affected. Contractures become permanent and The Scotson technique, while highly effective, takes time. I am have the need to let gravity help Ellie’s bones to grow properly. The regime we stick to includes a great deal of tummy time. This has saved Ellie’s back from curvature and her hips and pelvis from deformity that can happen when you place a body in a position it is not ready to support like sitting or standing. My approach to weight bearing is more homeopathic meaning less is more. I want to have Ellie be able to stand in her stander for maybe 5 to 10 minutes per day.
The medical paradigm and approach to “treatment” for CP is horrifyingly not one of healing but one of management. Meaning, let’s make sure we can still bend this kid so we can get them in their wheelchair. It was horrible to first realize that many medical interventions designed to “treat” the many conditions generalized as cerebral palsy were mainly created to ensure management of the patient by the caretaker not to actually heal the patient. This is why we agonize over most decisions we make for Ellie when it comes to subjecting her to medical interventions.
So here I am casting for hope. Hope that Ellie will one day walk. Hope that Botox and casting will stop the contractures. Hope that all of this will ease any pain that she may be having due to the spasticity. Hope. For all my education and talents, hope is what I have at the end of the day. Medicine does not have all the answers, though I really wish it did. I wish someone did, it would make things so much easier. But when it comes to the brain and how it really works – no one knows for sure. I am left with hope and my eyes, which are still watching the baby as they have been since day 1 of life. Watch the child because she will lead the way.