Growing Pains
I have loads and loads of literature and information on Cerebral Palsy (CP), but I am still learning everyday about what it really means to have a child with CP. I’m learning some through the medical publications, clinical trials and white papers that I have, but I’m learning more through watching Caleb grow and live with CP.
On Sunday morning (2-19) Caleb asked to be held more than usual, and of course I took the opportunity to do just that. But when I needed to put him down to actually get something done for the day, he was hesitant to move. He could walk, but it was different. He could walk, but it was slow. He could walk, but he didn’t want to. He could walk, but it was with a limp. He could walk, but finally he looked at me and said, “Mommy, it’s too difficult.”
I’m often not home in the mornings, so I asked Dan if this was par for the course and maybe it just got better as the day went on. Nope, not the case. We continued to monitor him throughout the day, encouraging him to walk, but quickly swooping him up if he asked to be held.
The day was beautiful so we picked up where we left off last fall and took Thomas the Train for a walk. His balance was off and his walking was struggling, ultimately ending in a tumble that caused quite an eye injury.
Regardless of his struggles, I wasn’t going to let him miss gymnastics, even if it meant he sat and watched. I finally had some first-hand experience into why my parents never let me skip dance, gymnastics, cheerleading, piano, etc. They were paying through the roof whether I showed up or not. Caleb participated and remained in good spirits, but I left that gym in tears. It was the first time I had numerous people ask me about his “hurt” leg, to which I had to respond that he isn’t hurt, he just has a Neurological issue, called CP. Sometimes reality hits us when we least expect it. I think I’ve been relatively strong, but that can’t last forever. It was an emotional few days as I watched him struggle.
We have a follow up appointment with Caleb’s Orthopedic Surgeon on March 8th, but I didn’t feel comfortable not addressing his gait change that was causing him to struggle. He didn’t appear to be in pain, but something was different. On Tuesday, I had numerous conversations with the Orthopedic Physician Assistant (PA) at Gillette. To be honest, we didn’t know if we should call the Pediatrician, the Ortho Surgeon, the Neurologist or the Physical Medicine doc. I defaulted to the Ortho Surgeon for various reasons:
I’m slightly obsessed with the intellect of his Orthopedic Surgeon. I read about all the wonderful things he is doing often, and it blows me away.
I worried something was structurally wrong such as a broken bone or a growth spurt causing sudden leg length discrepancy.
I have received 3 different recommendations on how often Caleb should wear his brace/AFO and I want them to tell me the final recommendation.
I couldn’t have been happier with the help we were given. The PA worked us into her schedule today (2-23) and spent an hour with us. Caleb was doing better today, so the actual observation wasn’t as helpful as it may have been a few days earlier, but the good news is that he was doing better. We still don’t know why he struggled walking for 4 days, but I did get some answers about when I should be concerned about a change in gait and which specialist I should involve.
The last week was an indicator of the unknown. We don’t know how this brain damage will affect his development as he grows. I just pray everyday that he stays as strong throughout his life as he has been thus far. It’s not going to be easy for him or for us as parents, but we can guarantee him a fun-filled life and unconditional love.
Below is a rare moment captured where Caleb and Duncan are sharing.