In my May column I wrote about Natasha. An Illinois mother who truly inspires me. Her son has Krabbe disease and will not live as full a life like it’s so often anticipated for the future of a two year old. He was a healthy baby when they brought him home in February of 2011, but about eight months later, he began to show signs that something was wrong.
Dann and Natasha are waiting out the ride, (not as a parent with a special needs child, but parents who have no idea which day will be Kenan’s last).
As a mother, I have a lot on my plate emotionally, financially, time-wise and otherwise. But Natasha and her husband have so much more.
I’ve spoken with Natasha on several occasions to learn more about Kenan’s disease; how they live their lives and the challenges they face. She is an inspiring woman. Not only does Natasha still have the passion to parent in the face of her challenges, but she is always willing to set aside time to talk about Krabbe and Kenan in an effort to raise awareness of the disease (1 in 150,000 children will have Kenan’s disorder) for which there is currently no mandated testing or screening. Kits are available online at Huntershope.org With one simple heel prick, a child can be screened for over 60 diseases at birth, regardless of state legislation. (These are not currently covered by insurance.)
To give you a glimpse into their daily routine here is:
A Day in the Life of Kenan:
3:00 a.m. Good Morning: Kenan wakes. Natasha is on duty first with him. She’ll give him Pedialyte via his G-tube which they found hydrates him. Kenan lost his ability to swallow and take food by mouth early on in the disease. He was given a g-tube (button in his belly that allows liquid food to be delivered while bypassing the mouth and esophagus.) This time in the morning is Kenan’s roughest of the day because after being asleep for seven or eight hours his chest is gunked up with congestion. Natasha will do chest therapy; pounding on his chest, repositioning him, trying to get him cleared up. When she is done, she will lay with him and run her fingers through his hair. Before the disease progressed they used to play, but now they tend to use their time in bed in the mornings to cuddle or catch up on sleep. If Kenan falls back asleep Natasha is able to use her laptop to do bookkeeping for their fine art installation business. She will correspond with clients, send emails or do invoicing. She might even catch up with fellow Leukodystrophy families via social media.
6:30 a.m.: Kenan gets The Vest treatment, which is one of the best therapies he has right now. His torso is wrapped up in a sling that is connected to a machine via tubing. This machine inflates the sling with air that pulsates and shakes his torso, clearing out any accumulated congestion (similar to a machine used for Cystic Fibrosis). He receives this three times a day, for fifteen minutes each, right before mealtime. This will help decrease the risk of respiratory infections. Colds can make him worse, but so far he’s only had one major episode. Natasha and Dann feel it is because of this constant treatment.
7:00 a.m.: Medications and breakfast begin via his g-tube. Tamsen and Natasha’s husband will be getting up and will get ready for the day. Very similar to most all-American families, it’s the morning rush to get out the door.
7:45 a.m.: Brushing teeth. Kenan has molars and more teeth coming in, so Natasha will massage his gums for about 15 minutes every day. She knows it feels good to Kenan because he cannot chew on toys to relieve that pressure and pain of new teeth like other toddlers. There are many children like Kenan who won’t get their teeth at the normal age range from the lack of pressure that comes from being able to eat food by mouth.
8:15 a.m.: It’s time for learning. ABC’s and counting. Natasha says, “Kenan likes this; I can tell he is intellectually bored so I try to layer as many pieces of information as possible, like saying the letter “B” for ball and then letting him hold a ball.” Kenan’s vision is not100% and suffers from cortical vision impairment (visual impairment that is caused by a brain problem rather than an eye problem). Natasha will try to try to relate sounds by saying them then using Kenan’s fingers and hands to draw or spell the word in the air (like a straight line down then two humps for B). This also acts as physical therapy for Kenan with the stretching motions they use. She will touch one of his fingers at a time while counting ‘one, two, three’. Less than an hour of this and Kenan is wiped out. It’s time for his nap now and hopefully Natasha’s shower. During his nap, he is comfortable and Natasha is grateful that he needs no suctioning. She will make up the beds, fold laundry, return phone calls and do anything else that is small enough to squeeze in while he’s asleep. (Just like most moms.)
10:00am: It varies from day -to-day but Kenan typically gets one of his therapies at this time. Monday he receives Developmental Therapy, Tuesdays are set aside for doctor’s appointments and weekly visits from his hospice nurse, Wednesdays are Music Therapy. Thursdays are Speech and Swallow Therapy and Fridays are Physical Therapy. Each one is designed to stimulate Kenan’s senses and body, keeping what abilities he does have as strong as possible. Although an hour of time is dedicated each week to the therapist, Natasha incorporates what she learns from each into Kenan’s playtime and daily regime. Using Speech and Swallow as an example, Kenan cannot swallow well enough to take food by mouth but he can handle having tastes of different foods. His therapist has taught Natasha how to safely do this by dipping a Q-tip into juices, sauces and jams, allowing Kenan to experience the world of food and flavors. This is something they do alongside each one of Kenan’s meals.
11:00 am: If the weather permits they take a walk to the local playground. Kenan has always loved swinging on the swings. Friends called and the City of Chicago installed a special cradle swing so that Natasha can comfortably and safely hold Kenan in her lap. During the winter months when going outside isn’t an option, Kenan could spend the next hour in his stander. A piece of equipment that is probably the most crucial in the prevention of morbidity. Kenan gets to experience his body in complete head-to-toe vertical alignment allowing him to bear weight comfortably, strengthening his muscles and set his joints. Gravity now can affect his vital organs so that they can rest in what’s meant to be their intended alignment.
12:00 noon -Lunch: Again begins the routine of fifteen-minute machine therapy to clear out any congestion followed by another feeding. One thing which stays the same is that Kenan has daily visits with a nurse. Monday through Friday for four hours at a time a nurse comes into their home; freeing Natasha up to do things like go to the store, complete tasks or errands, spend time with Tamsen, return phone calls, deal with Medicaid, read/reply to emails and address any client issues. Like any mother, it’s difficult for Natasha to leave Kenan. It could just be separation anxiety for both of them, but Natasha also carries the additional fear that Kenan may take his last breath while she is away. But, also like many other moms, she must carry on with our daily tasks and put the worry away, knowing that they make the time they do spend together very special. Natasha knows that she has to take care of herself too and like most moms who put ourselves last, she must remember the airplane flight attendant’s speech when she instructs us to put our own oxygen mask on first. The nurses are there to help her. So she will have her twenty minutes of alone time in the car before she picks Tamsen up from school and she will address other things needing her attention…all the while she will be thinking about getting back to her baby. Incidentally, Kenan will also be thinking about her coming back. Because, as any two year old would be anxious to see their mommy, Natasha says she can tell when she arrives home and Kenan hears her voice, he is happy she has returned (he cannot see much at this point, but he can hear her).
3:00pm: Stander time once again. At this point Kenan’s older sister Tamsen (4yrs.) is home. This has developed into her special time with her brother. The apparatus puts the two of them and the same height and, for the most part, allows Kenan to be independent of an adult. They play, draw and dance together.
4:00pm: Massage (to promote muscle relaxation and circulation) and bath time.
Dinner Time: Dann will be arriving home; Kenan will have another treatment on his machine and get his medications again (there are numerous meds throughout the day). Kenan will sit on Natasha’s lap for dinner and enjoy “tasting” with the rest of the family.
Bedtime: Dann is on duty now and will read, sing songs and lay with Kenan depending on how Kenan is feeling. Dann will stay with Kenan until he falls asleep. Daddy will get about 5.5 hours of sleep each night before he wakes up to head out to work in the morning (mommy will average about the same amount of sleep each night).
In the meantime, Natasha will also be helping Tamsen get ready for bed. It’s bath time, story time, etc. When everyone is settled in, mom will do maintenance on the machines and medical paraphernalia; cleaning 50 syringes, washing the food pump and bag.
Two babies, peacefully sleeping now. They were both loved and cared for to the best of Mommy and Daddy’s ability. Mommy and Daddy are very, very, tired now but will get up and do it again tomorrow, because that’s what parents do for their children.
It’s been a good day in the Spencer-Witczak house.
Stay tuned for more about Natasha’s family on Family Matters with Amber.