By: Stacie Lewis
This week, a new weapon in May’s cuteness arsenal: her Supergirl Lycra Suit. Lycra suits help children with cerebral palsy gain better control of their bodies.
May’s suit is made to measure and fits like a glove. May has to be zipped into it at six points: front, back and both arms and legs. Once inside, I challenge you to not think she looks like a contender in the Tour de France only, of course, much much cuter.
The suit is meant to help her in two ways. First, it will give her added support. Two different materials are used, one with a greater give than the other. Along her back, for example, the white lycra is stiffer than the pink to promote better posture. Second, as it acts like a second skin, it is meant to increase her sensory awareness of her own body.
May’s physio instructed us to trial May in the suit for a couple of hours a day, building it up over time until she wears it all her waking hours. While I nodded in agreement at the physio, inside my head I already had May wearing the suit 24/7.
Like many things in this world, I was wrong about that one. It was very obvious from Day One that May would only be able to handle the suit in short intervals. At first, she found it unnerving. She didn’t want to be put down while wearing it. She didn’t like being held in certain positions.
By today, almost a week on, May can wear it twice a day for two hours each. I believe her sensitivity is encouraging.
In May’s first weeks, she lived in an incubator in the Special Care Baby Unit. We could not hold her, so would gently stroke her through an opening in the side. As we ran a finger along her cheek or against the soft skin of her stomach, she would tremble from the over-stimulation.
We were warned to expect this, but rather than be put off, I continued. After her release, May would be held, kissed and bounced, and to do that she needed first to tolerate being stroked. Luckily, my hypothesis was correct. The more we stroked May, the less she trembled.
The suit will do what we can not: stroke May all day long. If the first days are any indication, it will have as positive an effect as we did.
If you can handle the supersonic snorting noises in the video below, you will be rewarded with May propping herself up with her arms. An amazing achievement!