At eighteen months old, we were told that Koa-Rae had joint laxity. She was not able to pull herself up onto her legs. She was not able to stand up on her own. She was not able to walk. Her pediatrician had reassured us that he would refer her to a physical therapist. However, as her Mom, I was determined to get those joints stronger.
From my own experiences, the only way I knew how to strengthen weak joints was doing pool therapy. Keep in mind, I was just going off of what I’ve been told about her little joints, we had no x-ray proof, just words and observations. I thought swimming was the way to go about strengthening those little legs. We quickly purchased her a blow-up ring and a swimsuit and off we went. We spent days in the pool, letting her kick underneath the water.
No more than three weeks after letting her swim and kick in the pool. She could not only pull herself up and but she was also cruising along the furniture. We were making progress. Little by little I could see she was finally gaining strength.
September 2016, two months before Koa-Rae’s second birthday, we had finally received our first letter from the Children’s Therapy Service. At this point, her main form of transportation was shuffling on her knees. She was going through leggings after leggings scrapping holes in her knees from shuffling on them everywhere.
I ripped opened the Children’s Therapy Service letter, to have finally read that no therapy input was needed:
Koa-Rae presents with some mild joint-laxity consistent with her age but does not need to have input from special services. However I would suggest that her parents give her lots of opportunities to develop her motor skills, e.g. To take her to soft play centres, baby toddler groups e.g. Tumble tots, singing groups, swimming.
‘Mild joint-laxity consistent with her age”?! I have not see any other child her age moving around the same way Koa was? ‘Take her to softplay’?! ‘Swimming’?! Everything I was already doing. My heart had dropped into my stomach. I was in disbelief.
My baby was almost two years old now and she could not get herself up on her own two feet. She wasn’t able to go and run and explore. She wasn’t able to explore the world on her own and just be a toddler. Again, I was always getting everyone’s two cents ‘she will do it in her own time’, ‘every baby is different’, ‘she will walk when she’s ready’. What was hard for people to understand was that she physically could not get herself up. She couldn’t stand up still. It was like she had no energy in her legs to stand up. There was no ‘power’. I knew something was just not right.
Now do I just wait it out? See if she just gets up one day, everyone says she will? Not a chance! I just knew I couldn’t wait around. It wasn’t about getting support anymore it was more about getting some sort of direction. I felt like the professionals weren’t helping me. Maybe they didn’t see what I saw? Maybe they thought I was another paranoid mom? Whatever the case, I had to make a move in order for Koa-Rae gain confidence quick.
Two weeks later we went to our second pediatrician appointment, only to be told that Koa-Rae now had hypermobility. He agreed to put another referral to the therapy services for her. Again, another waiting game.
So seeing as we were making little progress, we were back in the pool. This pool was perfect for our “home” physical therapy sessions. It was .4 meters (1 foot 3 inches) deep, which let Koa’s little feet touch the bottom of pool enabling her to move around with her head above the water. It couldn’t have been more perfect.
Surprisingly, it took no more than a few visits again for her to gain confidence to walk in the pool by herself. This was without standing in her blow up ring, or holding onto our fingers at all. It was near enough two or three steps at first, but it was one heck of a victory for her. Her little legs would move then her top half would fall forward or backwards into the water. She was absolutely loving it. She loved walking, she loved being free. Her little face lit up and her triumph laugh was so contagious. She could do it! We knew now, the fight was in her. She knew we were supporting her and we knew that she wanted it.
It was time to hit the streets. She was able to walk short distances holding our hand. We kept encouraging her to walk next to us because in my mind, I thought this was making her legs stronger. I even purchased padded pants (snow pants) for her because she would eventually get weak in the legs and fall hard on her knees.
Although this was fun, it took a lot of time and patience. I was constantly questioning myself. Was it okay for her to walk outside the pool? Was she in pain? Was I hindering her joints? Again, I had absolutely no direction. I had no idea what was best for her and what not to do. At the end of he day, we just had to follow her lead.
In November, after Koa’s second birthday, still no word from the therapist, she became quite ill. She was weak. She was sick. She had no appetite whatsoever. In the two years of her life we had never seen her like this. We weren’t able to keep up her pool therapy because of her being too ill. She was backtracking. She needed help and I needed to do something fast.
It was then that we were introduced to a whole new form of healing. It was then we found one of the first angels of Koa-Rae’s journey.
Squeal, Sign, Mumble,
The Bennett Babes