Our second daughter, Katie Graves, is 8 years old and has already lived quite a life. She was diagnosed with a complete AVSD congenital heart defect during the start of my third trimester of pregnancy which meant that she would be in heart failure the minute she was born and would require open heart surgery as an infant to save her life. A couple of weeks after that news, we received a second call confirming that Katie also had Down syndrome. At the time, I was unable to understand how she was going to overcome such dire obstacles. It seemed impossible and the grief was significant.
Katie was born April 10, 2009 and completely altered our lives from that point on. Being able to see and hold her; stare at her staring back at me – I felt like we had a shot. I hated that she had to go through what I knew was coming. It was not fair. But, she had a fighting spirit and I received strength from her strength.
Katie was immediately put on an NG feeding tube and stayed on that tube until and past her surgery. Although we tried extremely hard to feed her orally, she was classified a “failure to thrive” as she could not seem to drink much. We realized later that this was not because she was too weak, but was because she was aspirating the liquid into her lungs when she tried to drink, and as one feeding therapist told me – if your choice is eating or breathing, you pick breathing every time. That NG tube went up her nose and down to her stomach for the first 6 months of her life.
At 5 months old and weighing only 8 pounds, we handed Katie over to the heart surgeon at Children’s Mercy. I will never be able to describe the feeling of handing your child over to someone knowing that they will be actually stopping her heart in order to do the surgery. I literally placed her life in his hands. I have never experienced a worse or more anxious feeling.
After the surgery, Katie did not bounce back. With open heart surgery, there is always a 1 in 20 risk that they will inadvertently damage the electrical conduction of the heart. They simply cannot see how to avoid it, but 19 out of 20 times, they do. Katie was the 1 in 20. 2 weeks after barely recovering from open heart surgery, they wheeled her back again to open her back up, attach a pacemaker to her heart with a lead that went from her heart to her abdomen for the battery. She was too little to place the battery by the heart, so they “dug” the lead down to her abdomen. After that surgery, she developed another complication from the surgery which required us to spend several more days in the ICU. After 34 days in the ICU plus 2 more in recovery, we were finally able to bring Katie home.
One month after bringing her home, she pulled her NG tube out of her nose (this was not the first time). We decided – let’s see if we can keep it out. By that time, we were able to give her thickened liquids, and she was able to drink without aspirating. We were so thrilled to say “goodbye” to the feeding tube! Katie has had an additional pacemaker replacement surgery since that time, and the doctors have warned us that she may have to have another heart surgery as an adult.
Understanding this backstory is important, because, if you met Katie today, you would never know what she went through. She is certainly not “frail!” She was walking by 2 years old which impressed all of her therapists. She was running very soon after that. Her two biggest strengths are her physical abilities and her social interest. Unfortunately, however, her disability comes with developmental challenges that inhibit her ability to be included in physical and social activities. This girl loves to run away. “Elope” – that is a word that has a whole new meaning to me once Katie started walking. Katie does not stop. Katie does not like to comply. If you tell her to stop, she goes faster. While “cute” to some. This issue has been extremely problematic for her and dangerous to her safety. It has cost her the ability to participate in social activities because she cannot “hang” with a group. She leaves, crawls under tables, drops and flops, you name it. She cannot be part of a sport team because she is unable to sit on a bench with her team. She even misses out on simple activities like going on family walks because of this behavior.
Katie has received some additional diagnoses as she’s grown: Hypothyroidism, ADHD, and PDD are some of them. She is currently being evaluated for ASD, ODD and I’m sure some other “Ds” that I don’t even know about yet.
The good news is that she is slowly overcoming these obstacles with extensive and frequent therapy, behavior interventions, and school partnership. Every year, she speaks more, gains a little more patience, shows more social skills, and complies a little more to rules.
Katie loves to be out, be physical and be social. Katie absolutely loves some thrills. She is a sensory seeker in a big way. When she was only 6 years old, we took her on the Silver Dollar City roller coaster that goes through the dark cave. There was a little boy behind her that was terrified and crying the whole time. She was sitting behind me with her dad and I remember thinking – oh no, this is going to terrify her too and she’ll never want to go on a ride again. The ride ended, I look behind me, and she smiles at me, holds her little finger up and says “one mo’ time.” That pretty much sums up her desire for thrills. A bike would be perfect for her, but we have tried many types and failed so far. She can ride with training wheels in the basement, but the second she gets outside and starts down a hill, she panics and forgets how to brake. Once that happens, the trip is over and she doesn’t want to get back on. Also, given her significant elopement and behavior issues, if she ever does figure out how to brake and wants to continue to ride, we will have a pretty big problem with getting her to comply, stop, and safely ride with us.
After extensive research, I found the Buddy Bike. It is as if that bike was made for Katie. It is a tandem bike with the little rider in front (great for sensory seekers who also like to feel in control). The rider is pedaling and also using their own hand brakes, so she will be learning the skills of independent riding while in a safe and enjoyable space. Getting this bike would enable our family to do something we have never been able to do with Katie – go on a ride together. In addition it would help us to just spend more time enjoying the outdoors together. It will also give Katie a sense of accomplishment, physical exercise, and some great thrills riding in the front and saying “hi” to everyone she passes.
