Kyle & Lauren
When they were born, Lauren was our feisty, colicky baby, while Kyle was our happy, easy going baby. About six months later, they swapped roles and they've stayed that way ever since--Lauren is now our giggling sweetie, and Kyle is our demanding little devil. Lauren has an incredibly social, extroverted young lady who hasn't met a piece of candy she didn't like. Kyle is very social, too, and has learned that in a house full of women he has to speak louder than they do in order to get attention! They are happy kids who light up whatever room they're in. It's a joy to watch them play together, even when they aggravate each other and argue over their toys!
The twins are six years old now. Lauren is stronger than Kyle, though her body is still very weak. She loves Barbie and the Disney Princesses, and she loves every product relating to Barbie or the Disney Princesses. Each day will find her also drawing, writing "books", singing, and chair dancing. At just six years old she is an advanced reader, an enthusiastic student, a social butterfly and a compassionate soul. She makes friends wherever she goes and has a great sense of humor for such a young person.
Kyle loves baseball, Star Wars and video games. He's very competitive and is very good at problem solving. His body is somewhat weaker than Lauren, so most of his toys are electronic and have touch-screens, as opposed to heavier toys that can be hard for him to lift or with big buttons to press. A great example of how technology enriches his life is the Nintendo Wii--with minimal motion, he can use the Wii remote to navigate through his favorite games. Additionally, Kyle loves talking about baseball and Star Wars, watching baseball and Star Wars, and playing baseball at the Miracle League of Arizona. Also, Star Wars.
Daily life with Kyle & Lauren can get a little laborious, but their joyful dispositions make the burden feel lighter. They both get tube-fed at night while they sleep, so keeping pallets and boxes of feeding supplies organized can sometimes feel like a full-time job. The good news is that their g-tubes are working--Lauren is now at the 5th percentile for size, and Kyle has finally stopped losing weight and now is gaining. We're looking forward to getting a potty chair that's just right for their physical strength and abilities and working on that developmental milestone, but until then they remain in diapers. They each have AFO's (leg braces) to keep their feet flexed and limit ankle muscle contractures, so remembering to put them on everyday is important. They also both have a TLSO (back brace) to slow down the curving of their spines (scoliosis). They already have curvatures of 35%-45% so spinal rod surgeries are in each of their futures, possibly in 2013. All of their braces have to be refitted and replaced as their bodies grow, much like shoes for a growing child's feet, so the path to our orthotics specialist is a well-beaten one. We also regularly bring their electric wheelchairs to the seating specialists so that as their bodies grow bigger and their fine motor skills change, their chairs can continue to provide adequate support and function properly. We also have a team of specialists at Phoenix Children's Hospital--including a developmental pediatrician, neurologist, pulmonologist, cardiologist, gastroenterologist, orthopedic surgeon--to whom we pay visits to for regular evaluations and procedures.