My name is Ryan Jennings and my wife Sara and I are the parents of 6 year old twins Penelope and Alexandra (Penny and Alex) who each have a diagnosis of Cerebral Palsy (CP). We currently live in Gig Harbor, WA where Sara is a full time stay at home mom (formerly she served 5 years in the US Army) and Ryan works in law enforcement. We originally heard about your wonderful foundation a few years back while attending a UCP conference in Portland.
After a difficult pregnancy that included emergency surgery for Twin-to-Twin Transfusion Syndrome at 19 weeks and 3 weeks of bed rest for Sara, Penny and Alex were born at Legacy Emanuel in Portland on 1/2/2013 at 24 weeks 4 days weighing a little over 1lb each. During their 5 months at the NICU at Randall Children’s, Penny underwent multiple surgeries to address problems with her intestines as well as having a shunt placed in her head due to Hydrocephalus (since, she has had 3 malfunctions resulting in surgeries as well as eye surgery) while Alex also had surgery to input a feeding tube into her stomach.
Around the age of 1 both Penny and Alex were diagnosed with spastic quadriplegia cerebral palsy. This was quite a shock to hear even though we were warned throughout their first year of life that CP was a possibility. Listening to doctors tell us about all the things the girls may not be able to do was difficult to hear. We have always maintained a positive attitude and have refused to accept those negative terms about our girls. We very much want them to be able to participate in everything they desire.
Both Penny and Alex use wheelchairs for mobility. Alex is able to push herself in a manual wheelchair while Penny uses a manual wheelchair we push. Alex’s spasticity mainly affects her from the waist down and Penny is more affected throughout her body and needs much more assistance with daily activities. Despite Penny’s disability she continues to amaze us with her incredibly positive attitude and how hard she works at all her activities. She has a smile that makes others smile and loves being there for her sister and cheering her on. Alex refuses to let her disability get in her way with her level of persistence and desire to not let the word “can’t” enter her vocabulary. Penny has a power chair, which we have begun using at home, however transporting her power chair outside of the house is quite challenging. We currently have a minivan but are quickly realizing the need for a modified van especially with the transition of Penny using her power chair full time in the near future.
As the girls continue to grow the need and desire for them to attend activities outside the house also grows. We strive to have our girls stay involved in the community as much as possible so transporting them has become increasingly important and we do not want the burden of transportation to supersede the wonderful benefits of staying involved in all community and school activities.
The girls have a busy schedule including PT, OT, speech, horse, and water therapies multiple times per week. Alex participates in wheelchair basketball and dance classes while Penny loves getting outdoors and enjoys cheering her sister on.
The physical demands of lifting the girls into their car seats and loading their wheelchairs in and out of the car has really started to take its toll as Sara battles back pain frequently. I am usually at work 10-12 hours a day and am not at home to assist with the loading of wheelchairs to and from school and after school activities which leaves Sara there to lift the chairs. With Penny’s current chair weighing around 70lbs and due to its awkward long shape, it has become a two-person job trying to load it in the trunk. Switching full time to her power chair soon will only necessitate the need for a ramp. Additionally, not being able to properly secure the chairs in our van has caused a lot of damage to the side walls including cracks and tears in the upholstery. This heavy lifting of both chairs has made the simple task of getting out the door rather lengthy and exhausting, and honestly has made us more selective with our family outings.