Category Archives: family and friends
I pray that you enjoyed your Thanksgiving holiday with family and friends. I hope that your stomach was full from good eating, your face hurts from laughter, and your pockets are ready for the early Christmas/Black Friday shopping. All About Max, is a monthly series we post on the last Friday of the month about Super Mighty Max where we will give a comprehensive update on Max’s health and progress.
Last month Max spent a week in the hospital due to elevated fever as high as 103F. Once we arrived they saw he was breathing fast and was put on low flow oxygen in a regular room then moved to the Pediatric Intensive Care Unit on high flow oxygen to help him breath better due to being infected with the flu virus. He did receive a flu shot, but this strand of flu was one that couldn’t have been prevented from the shot. During his hospital stay we decided to take him out of daycare completely for the winter months to avoid him getting sick again with another hospital stay. He was going to daycare twice a week since October for therapy and to see the other kids.
We also discussed with a neurological nutritionist at the hospital about switching to the Ketogenic diet or a seizure reducing diet that consists of all proteins and good fat, no carbohydrates. It’s like the Atkins diet to reduce seizures and it has been studied to work miracles in kids with seizures. Since Max is g-tube fed primarily, he will receive a new formula, and possibly some puree foods. We discussed the Ketogenic diet recently with his occupational therapist and she sung it’s praises for how much weight people lost in her family with other medical issues like diabetes and high blood pressure. So, we decided we would do our own version of the Ketogenic diet when he starts his to support him during this lifestyle change. Not sure if I’m 100% going to give up carbs, but we will try it out and let you know our results. We will have a short hospital stay in two weeks, to evaluate if the new diet will help, and how his body responds to the new formula. More details next month on how much his seizure activity has reduced due to this new diet.
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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.