Sunday, September 15, 2013
Mitochondrial Disease Awareness Week
Welcome to yet another annual Mitochondrial Awareness Week! I say that with a tad bit of sarcasm because in our household, every day is awareness day. I know, very cliche, but it's so true. Every single day, at some point in dealing with my son who has Mito or following other families and praying for them during their children's struggles, I want to just go door to door or in public, I have this desire to start giving a Mito awareness presentation in hopes the world will gather, learn, and give. GIVE. That is probably the number one-A thing we need for Mito to become erradicated. Money fuels research. Money fuels awareness, but the awareness piece has to be in place to help bring in enough in research funding to make more dents in Mito.
How does Mito affect our household?
Not sure where to begin, so I will say that most of you are aware that Mito causes Garrett's severe constipation, delayed gastric emptying, sensorineural hearing loss, mental retardation, OCD, ADHD, Autism, anxiety, low muscle tone, developmental delays and failure to thrive. Each day revolves around Garrett's care of his appendicostomy very first thing in the morning. It is his appendix brought out through his belly button with a tube in it for now. Later it will just be a hole or "stoma" where we feed a tube into him 6 inches or so and gravity feed 1000 mL of saline in hopes it manually flushes his colon. For now it causes him to poop, but not in the hopeful hour after the flush. Holding my breath this may possible work in the future. Next, it's get the kiddo to eat SOMETHING so he can take his meds. Not always the least bit easy when it's early. Next, it is morning meds: 3 pills to be crushed and mixed with one of the four liquid meds/supplements that make up the mito cocktail, along with a couple of gummy vitamin b3 pieces. Then pack his backpack to be sure he has extra undies, wipes, diapers, and pants. Keep in mind he is second grade age. Next, get him on the bus, which THANK GOD, he loves!!! Then it's getting his meds ready for the lunchtime dosing. On Mondays I can take his meds to school for the week. Each bottle (3 pills and two liquids at lunch) has to be in it's own prescription bottle and then directions alongside. And don't forget the 10 mL syringes for oral dosing!!! Fridays I pick up leftovers of the liquids and bring home to restock. He gets off the bus at 3-is and then it is two laxative tablets crushed into juice. Four p.m. is evening meds: three pills and four liquid meds, then one last med at bedtime. And sometime in there we are trying to get him to eat and drink..... Some days are better than others. I wake and change his youth diaper at least once nightly so he doesn't flood the bed. He has urine control in the daytime if his flush isn't all absorbed and peed out. At night he loses the rest of the flush liquid and usually soaks the bed. We have gotten good at layering chuck pads, fitted sheets and draw sheets. He has a developmental therapist/personal care assistant who can spend up to 40 hours per week with him, but that's pushing it for her. Garrett usually wakes between 4 and 6 the happiest person ever, but we try to get him to go back to sleep so we can all get some rest before the sun is up!!! Then it's flush, medicate, feed, and repeat. Every week, it seems we have an appointment for medical issues or maintenance. Then there's the everyday mental mess that is my son. He is loud, overwhelming to all of my senses, but incredibly cure and lovable!!!
While to those of you with normal kiddos may think the above description of our time with Garrett may sound overwhelming, I want you to know that our son has a more mild effect of Mito compared to so many other children and adults. Many families live in the hospital with their Mito kids, celebrating birthdays, Christmas and every occasion inpatient. Worse yet, many more families celebrate occasions at home but with the gaping hole of the lost child who has preceded their parents to Heaven because Mito stole them.
Tonight it's these families who have empty chairs at the table, empty stockings over the chimney and empty car seats in the minivan that I want to stick with you. Learn, love and GIVE. Look for ways to give at www.umdf.org