Thursday, April 29, 2010

Newst News

Quick trip to NIH last Sunday and returned on Tuesday. A friend of Tracy's asked if we could get it in writing that we would be back in 3 days. The flight and cab ride to the Children's Inn went without incident, but upon arrival to the Inn, they couldn't find our reservation and as it happened the Inn was full. The on-call social worker approved our first night off the NIH campus at a nearby hotel. Slightly a pain because we had to use a shuttle on a certain schedule and no food was provided like at the Inn. We remained calm and had to remind ourselves that this must be the right place for us on this trip. After we checked in, the rain held off long enough for us to walk to a restaurant which again turned out to be a blessing. It was a local favorite called the Tastee Diner. The manager provided a safe meal(no allergic ingredients) for the girls. The girls appointments went well on Monday. Our room at the hotel was approved another night. Appointments went well Tuesday. Flight home was interesting. Southwest Airlines hosted something called Honor Flight for WWII veterans. It was a full flight including around 70 wheelchairs. By the time we were allowed to pre-board, there was only one row of three seats for us. The entire plane was full of vets. Even with the unexpected, things went smoothly. I enjoyed talking with a couple families I had made a relationship with. We were updated about the progress of the transplant protocol. It passed the scientific review with revision and goes before the IRB(patient safety) around May 10. This one is the hardest to pass and takes the longest to get revised. Please lift this one up. Another disappointment was that Karly did not gain any weight.(didn't lose any either) We had a nutrition consult. She gave us some soluble products that get added to soft foods to add carbohydrates and fat. We will give this a try for the next 4 weeks. We need success in this area particularly before the transplant over the next couple of months. Lift this one up also. Karly has been very allergic to foods she typically could eat. She swelled the first three days home. She's had full body hives twice. Now, she is a little less adventurous when trying foods...she does not want to experience the swelling and hives anymore. Most of the foods we find that she likes she cannot eat anymore. We have been eating mostly fresh fruits, vegetables, and grilled meat. These foods are lo-cal and healthy, but not great for gaining weight. We usually ask Kelsey if she eats this food or that, then we know that Karly can eat it. We are learning. Well as always, we are not in control, and we love it that way. We still have amazing peace.