Gav wasn’t an early walker, but nor was he late. He took his first solo steps in a hotel room in San Francisco a few weeks after his first birthday. He then spent a long flight to Sydney tottering up and down the aisles of the plane. A few months later, he was walking all the time, but not stable. I was concerned enough to take him to our pediatrician to note that he seemed unbalanced in some way. She didn’t see anything alarming in his gait, so we decided to see if things improved, and they did. Several months after that, there was a quick deterioration and we found ourselves in the ER one June evening learning the worst news of our lives. I was later told by neurosurgery and neuro-onc that it was not likely that my earlier fears were due to tumour growth. Gav’s tumour was fast and aggressive, and probably grew to the size that it did in about three weeks.
In that month before diagnosis, Bean had become increasingly cautious and slow-moving with himself, as he started to have a lot of falls. At the age of 20 months, instead of showing greater gross motor skills every day, his seemed to stagnate, and I remember wondering when he would be able to jump, as most of his little peers were. After his tumour resection surgery, Beanie spent two weeks in bed before taking wobbly steps again. The improvements we saw every day were tremendous. We felt so blessed, our little boy could still walk and control both sides of his body with equal strength. He had made it through the dangers of stroke and his shunt appeared to be working for him.
Of course, after being battered by treatment for many months and a long stay in hospital a year ago, it took some time to get Bean back on his feet. We were not able to begin physio until March, and even then were only seen at the rehab centre for a few sessions, as Gavin’s progress was considered good. He did do well, but had lost flexibility and strength in his legs. When he tries to jump, his little feet stay firmly planted on the ground. He struggles to walk up the stairs one leg at a time. His movements are not very fluid.
In June he underwent shunt revision, and had to start again from scratch, taking about six weeks to get to where he was before. We had hoped that by the end of the summer, we would see a little jumping bean hopping around. I took him to weekly gymnastics classes and he began Sportplay in September. For the last month I’ve been taking him to twice-weekly rehab appointments as a kind of jumping boot camp. And still, the body-brain connection just seems to be lacking. He was stuck with the gross motor skills of a child under 2.
This past Friday, we were given a children’s trampoline which has a side-bar to hold on to. Gavin and Bubby helped me set it up in the living room, and within a few minutes, Bean was bouncing away on it. After the first day, I noticed he was catching some air for the first time. He jumps on it in short bursts throughout the day, his feet are rising higher and higher. After having this trampoline for three days, Gavin can now jump on the ground while holding on to someone’s hands!
For any brain tumour parents out there doing rehab at home: Run to your nearest toy store and get one of these trampolines if you don’t already have one. It is a necessity. For any other parent facing long winter days inside with rowdy kids, yup, this’ll be good for you too.
Here’s a link to a video of Gavin on his trampoline this evening: