Category Archives: Gastronomy Tube
So, I’m sitting in Super Mighty Max’s pediatrician office as I write this. We are here for his 18 month well checkup. I get here, check in, and the receptionist hands me a questionaire to fill out. I take it and begin to fill it out.
I read through the first few questions and luckily there is a “Not Yet” column. The first questions were about his vision and hearing. The next set were about his fine and gross motor skills. I simply skim and just check “Not Yet”. Then we get to the questions above I looked at the headings for Problem solving and Personal-social and got upset. I felt like I was being punished for Super Mighty Max’s development. Trust me. I know I’m not. But to have to go through this process as if my child is a “typical” child is depressing. It makes me feel like it’s my fault and I’m not working hard enough for him to continue to develop these skills.
But we are working hard. He has physical therapy 4 x a month and occupational therapy twice a month. He is growing by leaps and bounds and I’m proud of the progress he has made. So, as the doctor comes in she starts to go through all of his specialists visits. I update her on his recent diet change and hospitalization. She then proceeds to look through the questionaire. I tell her I hated to fill out this questionaire every well visit. I tell her that it was torture for me to fill it out. She agreed that it wasn’t necessary, but wanted to make sure his early intervention services were addressing his development. We talk about his IEP/IFSP and what his physical and occupational therapists are working on.
We then discuss growth meaning height and weight. Super Mighty Max has grown 4″ in the last 6 months. But has actually lost weight. He currently weighs 23 lbs down from 26 lbs from his 12 month well check. Hopefully we will get some updates on feeding by mouth during his next gastrointestinal visit.
Stay Super, Make Mighty Moves, and Be Blessed!
Now that Max is 1 year old (14 months to be exact) I constantly receive the same developmental questions from acquaintances, friends, and even some family members who may or may not know that Max had a brain injury at birth. His brain injury has lead to a cerebral palsy diagnosis which effects and delays his gross and fine motor skills for all four limbs of his body. They ask questions like “is he crawling?” Or “is he walking” or “how is his appetite?” Or even “is he saying mom, dad, yes or no?” I always answer back stating what he does rather than focusing on what he doesn’t do, but can’t help to think why do these developmental milestones matter? Will he not be a child because he does not do these things? Would I love him less because he is not saying mama? What if there’s not just one path? What if there’s not just one set of milestones? There are many, many paths on the road to adulthood, and Max is taking the road less traveled. It’s a road with bumpier, less familiar milestones, but it’s still a road.