On Wednesday Drew had several appointments at Gillette Children’s Specialty Center. Drew, Karli and I dropped Ry off at the bus stop and then headed for Gillette. We saw three doctors and two technicians; every single one of these professionals were amazing. They are competent, compassionate, creative and open-minded. They listen, ask questions and confer with caregivers when making decisions. When we first visited Gillette about six years ago, the center occupied a small space next to Regions Hospital. Since then Gillette has expanded many times over and has become the go-to center for children with neuro-muscular diseases. I am virtually certain that there is no place on this planet that Drew could receive better care. In addition to the three physicians he saw last Wednesday, he sees an additional four docs on a regular basis. I am so very thankful for the care that Drew receives; I only wish that every child with SMA could receive similar care from this amazing team of doctors!
If you are a regular visitor to the Draz Fam blog you probably noticed that Karli is wearing clothes rather than pajamas in the video. I began the day before the visit to Gillette telling her that all the other children would most likely be wearing clothes rather than PJs. On Tuesday evening she was till adamant that she preferred to wear her pajamas. On Wednesday I asked her to reconsider; she ran to her dresser and put on a pair of shorts. I told her that it was cold and we were expecting snow that day. At that point she ran to the dining room window and spent the next 15 minutes watching for snow. Eventually she tried on a couple pairs of tights. They were “too tight.” This was not surprising since we have not updated her clothes for several weeks due to the fact she will only wear pajamas. Finally I suggested she try a pair of jeans. She added a Christmas shirt, I breathed a sigh of relief, and off we went!
Nana Barb
All I really need is love, but a little chocolate now and then doesn’t hurt. ~ Charles Schultz