History has shown us that after Will has a seizure, he tends to get... backed up for a while. We aren't sure if it is medication related, or somehow a physiological response. But whatever it is, it has caused Will some trouble in the week following a seizure, so we've learned enough now to start administering Pedialax in the day following a seizure to counteract this effect.
This past weekend, after Will's seizures on Friday, we ran out of Pedialax. I took Luke on a trip to the pharmacy to get some more. They didn't have what we wanted, so we turned to leave. Luke was in a great mood, skipping and laughing. We headed towards the door, me ahead of him in hopes of stopping his certain gallop towards the door. He usually beats me to the doors, gets a thrill out of having them open automatically, and then I panic as he is closer to the parking lot than I am.
The gallop never came. I turned around to see where Luke was just as he landed - face first - on the floor in the pharmacy. He was shocked. I was shocked. There was nothing on the floor to trip him. He started wailing. Crying, so hard. He had really hurt himself. I sat on the floor with him, hugging, just trying to get him to feel better. It never really occurred to me that we were sitting right in front of the entry door, next to the check out stations, and people were walking past us.
Luke eventually felt a bit better. I checked out his hands and knees. He seemed to be ok. Just still a little shaken, but focused in his renewed desire not to fall again and to also find Will's medicine. We eventually found the Pedialax at another store, which made Luke pretty happy. He probably hasn't thought about his trip in the pharmacy again. It has been on my mind, though.
The fact that we don't have two children with severe cerebral palsy is quite honestly, a miracle. Will's brain hemorrhages really weren't much worse than Luke's. They were born at the same time, under the same circumstances. Luke has had more shunt malfunctions than Will, which means that he has more brain trauma risk. It just appears that Luke's brain hemorrhages, while similar sized to his brother's, either affected different areas of the brain or affected the same areas less severely.
It is easy to look at Luke and see a typical 4 year old. Sometimes, even we forget everything that he has been through. It just isn't as obvious. He walks, he is developmentally and mentally equal to typical developing kids of the same age. He is a little small for his size, but still on the chart. And with all the school programs he does, his speech delay is nearly gone. When his hair is long enough, you can't see the shunt bump or the large J-shaped scar on his scalp.
The one area where we see Luke having the hardest time is with his feet. Those feet give him away. Luke's left side is weaker than his right side - likely from his brain hemorrhage at birth, and likely a very mild, undiagnosed case of hemiplegia. When he walks without orthotics, his left foot rolls painfully in, and his knees knock together. His orthotics really make a big difference, though even with them on, he can't lift up his left leg quite as high and he has a slightly odd gait. Maybe I am more aware of it than most people would be, but it is noticeable.
Luke has had weekly physical therapy since coming home from the NICU to help with his left side weakness, which shows itself most obviously when Luke runs. That left foot rolls and just can't keep up, and he holds his left arm close to his body as his right hand pumps in time. The likely cause of Luke hitting the floor at the pharmacy was his left foot not lifting up as high when he walked as his right foot, causing him to trip.
To watch Luke on the playground, you also realize he isn't as confident in the things he does. He climbs slower on the jungle gym. He can't catch anyone when playing Duck, Duck, Goose. He doesn't jump using the balls of his feet - he jumps just by flexing his thighs. These things don't seem to bother him now, but I can foresee a time when they will. These things don't bother us, because we know how incredibly well he's doing from where he was and what his prognosis was at that time.
Luke's physical therapist indicated that Luke could train his feet to be more responsive by increasing stimulation. My first thought was to put him in soccer. That is what I played when I was Luke's age. But we want Luke to have fun and be successful in these alternate type activities, and soccer might not be the best first thing to try. This is one of the reasons that we try to get him out hiking. Some other ideas were dance class and taekwondo. I know that there is a certain unspoken stigma when you put a little boy in a dance class. You get a lot of questions... ignorant questions. But I was actually amazed to find a dance class locally that is focused towards 4-6 year old boys. They do jazz, tap, and acrobatics. I think he might like that. I also found a couple of local taekwondo places. We even ran into a 4 year old boy tonight in the grocery store, still dressed in his dobok. I struck up a conversation with the dad - apparently the little boy had just come from his very first taekwondo lesson (less than a 5 minute drive!) and he loved it!
So we are definitely going to check these things out... and hoping to give Luke some confidence in his physical abilities before he gets to an age where he's too self conscious to try out some new, fun, strength and agility-building activities!