The Kendra Bausch Family
Dance. Volleyball. Track. Softball. Gymnastics. Cheerleading. Dances. Drivers license. Sledding. Building a snowman. Wedding. Rolling. Crawling. First steps. Walking. Running. Jumping. Swinging. Riding a bike. Dressing up. Shopping. TRADITIONS. HOPES. DREAMS. All of those and many more suddenly swept our minds with the diagnosis of Spinal Muscular Atrophy, and we didn’t even conscientiously know they existed there deep in our thoughts.
Kendra Rose Bausch was born a healthy, beautiful, baby girl on Saturday, October 31st, 2009, a Halloween baby at 5:25pm, two weeks early, weighing in at 6 lbs. 4 oz. All of her baby tests ran great. She learned to nurse quickly. She was the perfect baby! Our surprise pregnancy was rather easy with no complications, and I did everything by the book: eating healthy, exercising, watching everything closely. Kendra arrived in our arms as a quiet tempered, content, and happy baby. She didn’t cry much unless she was hungry or needing diapered, and when she did cry, it was so quiet that others found her little wail adorable.
As new parents, we knew nothing of what to expect except for what the email updates and books told us, and the doctors. Kendra began to push herself up with her arms early on, and lift her head, and attempt to roll. Doctors watched her closely because of her low weight, and told us how she was a lazy baby. Family helped reassure our fears of developmental delays reminding us that all of their kids developed motor abilities at different ages too. Our concerns grew as Kendra became older and she stopped holding up her head, pushing her body off the ground, and seemed to have no interest in wanting to roll. Our first referral was to see a failure to thrive specialist in July 2010. The quick fix was miralax and some of our problems should subside. Next, we saw a neurologist. This first visit was a consult, in which at first glance, she told us to go home and research Werdnig Hoffman Disease, otherwise known as a type of Spinal Muscular Atrophy. She briefly explained how most kids don’t walk, they don’t live very long, and this disease was not treatable or curable. We would then be set up for blood work and an MRI to determine the cause of Kendra’s gross motor delays. Riding home from our consult, Chris said to me, “Have you heard of Avery in town (Lancaster, WI)? There’s been posters everywhere about Avery’s Race for a Cure. Spinal Muscular Atrophy. I think that’s what she has. I don’t know what it is. But I don’t think it’s good.” I was clueless. I’d heard Avery’s name, and we even played summer league volleyball against a team sporting her t-shirts, but I had no idea what SMA was. Not wanting to get ahead of myself and bite off more I could chew, I decided to stay hopeful that just maybe ,something would turn up in Kendra’s MRI, and I wouldn’t upset myself by reading the worst.
That day in August, was the worst thing a parent ever has to go through. Watching the nursing staff poke my daughter ten times for unsuccessful attempts at getting an IV in about had me crawling across the crib and jabbing them with the needles a few times myself to see how they enjoyed it. Knowing now that kids with SMA have difficulty finding veins because of their low muscle tone angers me even more that they knew what they were testing for and didn’t take this into consideration to send in their best IV team. The wait for the MRI and lab work was emotionally exhausting. At this point, I had finally agreed to read some of the information out there on SMA. None of it is gentle! It all tells you the worst case scenario! When they brought Kendra back to us coming out of her anesthesia still, we felt helpless. Here we are suppose to be able to comfort our baby and tell her that everything is going to be ok, and all we can think is, it’s not. The neurologist came in with her MRI results and told us everything was negative, meaning we would have to wait to hear from our lab work in a few weeks, but she was basically guaranteeing us a diagnosis of SMA, if not something closely related, which wouldn’t be any better. What an awful feeling as a parent to be wishing that something wrong would have shown a pinched nerve or dislocated disk so that the doctors could do surgery or whatever they had to do to “fix it”. I sat emotionless the entire rest of the day, and probably well into the next week. Denial, probably, but just complete emotional exhaustion realizing that I never knew what the future held, but suddenly I was watching all of these dreams that I never knew existed for my little baby girl slip right out of our hands. A couple weeks later, our results were confirmed, but I was in the first stage of acceptance and realizing that this was going to be our life. Not the perfect life one would dream or imagine having, but the most perfect one we were going to have with our loveable, sweet baby girl.
The word in town quickly spread, and soon I received a call or message from Katy Pitzen inviting us to get together and talk and meet Avery. Our initial meeting was so overwhelming for what we didn’t know about SMA: the equipment, the scares, the frequent hospital and clinical visits. But, we have found some of the best friends any family could ask for when going through a difficult and trying time. They quickly helped lift our spirits and introduced us to the Gaynor’s and Dr. Kasper’s Gene Therapy Program.
People may say that we are strong, but I tell them that I would not have thought that I could have done it all before knowing what I know now. You do it because you have to in order to keep your daughter alive! You do it because there isn’t anything you wouldn’t do for your child! You do it because it’s what was handed to you, and even in the scariest of times, you will get through it, together, fighting hard to have every dream back that you once thought slipped away!
That is why we are in support of Dr. Kasper’s Gene Therapy Program at OSU/Nationwide Children’s Hospital. It is promising in giving us hope to live out our dreams! We have formed Team Kendra and are participating in our first event at the Madison Marathon on May 29th, 2011, to fundraise for research. We are taking “Every Step Towards A Cure” with Team Kendra. We are making the commitment to see this through to the end of SMA!
~Your SMA Family,
Kristin, Chris, & Kendra Rose Bausch