Fort Worth, Texas,
04
October
2019
|
11:49 AM
America/Chicago

Mommy Memory Failing? Here's What To Do.

A mom gives her simple solutions for keeping her complex life on track

By Cindi Coker

Ever found yourself  Coming and Going?? Mommy Memory Failing?? Brain on Overload??

Well, I find myself there VERY often, not only because I am a mom of twin 15-year-old boys but as a mom of a severely handicapped child. Most would say “Oh, you are a special needs mom” but I think of it as a “Special Journey Mom”……..Walking through the ups and downs of life with my son who has severe spasitic quadriplegic cerebral palsy.

Our twin sons (Colby and Clayton) were born at 31 weeks. Being born 9 weeks early, Colby was in the NICU for 30 days and Clayton was in for 45 days. Clayton’s body did not handle being born that early and after many complications he received the diagnosis of cerebral palsy. All four of his extremities are affected and he cannot sit, walk, talk, or eat on his own. He has seizures and requires 24-hour-care. He sees 11 wonderful specialists and his fantastic pediatrician at Cook Children’s who have kept him and his medical journey the best it can be.

I am writing this after a request from Kim Mangham, M.D., our son’s pediatrician, heard me talking about Clayton’s Care Board. Dr. Mangham and I were talking about a certain medicine and when it was given. She mentioned changing the time given so it would be easier for me. That is when I mentioned the Care Board and how it helps me remember when all meds are given. She was intrigued and asked me to write about it.

Life can get away from you and can often disappear when caring for a chronically ill child. “ALL THE SCHEDULES” - school schedule, feeding schedule, medicine schedule, therapy schedule, doctor schedule, family time schedule, extracurricular activites schedule, sibling’s schedule, husband’s work schedule, and so on and so forth. I felt like I was drowning in all the schedules so my husband and I thought there had to be a better way.

Clayton requires G-tube feeds every three hours, with water in between, medicine in the morning, late afternoon, and evening times. At times he has to do breathing treatments, so keeping track of that is important. He also needs to be stretched daily (which is called Range of Motion or ROM). Due to some complications with a medicine pump he had in his body, he had to have it removed and start some new oral meds which required a strict schedule on timing to keep the medicine in his bloodstream. Clayton also has many people taking care of him- us, my parents, his therapists, etc. So we all were always asking “When did he have his last feed?” or “When did we give that medicine?” Don't want to bore you with his details - just trying to give you a picture of why Clayton’s Care Board came into play.

As the years have gone by his care has increased and become more complicated. Also as his parents, we are getting older and knew we had to put in place a better system to make sure he got all he needed when he needed it. He needed the consistency of care from caregiver to caregiver - an extra layer to help eliminate human error or memory problems on our part.

So, as simple as it sounds we bought a LARGE dry erase board. I knew we needed almost every hour of the day on the board along with all the items, meds, and things we have to do with Clayton on it. I also bought some magnetic grids to place on the dry erase board so it would be organized and easily changeable. Now, when someone gives Clayton meds or stretches him we write down the time so the next person that comes in knows exactly what is needed and when.

Although, a dry erase board seems like a super simple solution and many of you may not have a medically complex care child, I can assure you that sometimes the easiest solutions can be the most life-changing. Hopefully, this information will help you through the special journey of raising kids and all that comes with it - Crazy schedules, mommy memory fails, brain overloads and all!!

Get to know Kim Mangham, M.D.

​Dr. Mangham is a pediatrician at Keller Parkway. She earned her medical degree at University of Texas Southwestern Medical School in Dallas. She completed the pediatric residency program at University of Oklahoma Health Sciences Center in Oklahoma City. Her interests include breastfeeding education as well as disease and injury prevention. Dr. Mangham is board-certified in pediatrics.

New and existing Cook Children's Keller pediatrician offices patients can make an appointment by calling 817-431-1450 or by clicking here for more information.

 

Comments 1 - 1 (1)
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Tanya Murphy
15
October
2019
I so needed to see this! I too have a special needs child....my forever baby. My Dalton has Corneila DeLange Syndrome. My precious son....
Thank you