We are so thankful that Kaitlyn has completely recovered from the virus that had us back and forth in the hospital for 2 weeks. It is so wonderful to see her smile and laugh and act normal. Every time we go to the hospital, we never know what is going to happen. I feel so blessed that she is healthy right now.
(Happy Easter from two little funny bunnies!)
Kaitlyn has been on a hospice program, called Kids Path, where a nurse comes out and checks on Kaitlyn every week. They also have doctors who can come to the house and check her out too, which is great. I finally feel like we are getting more of the assistance that Kaitlyn needs. We are still working on getting all of the equipment for Kaitlyn. We have more than we did a month ago, which is wonderful. She has a seat that supports her body well and a memory foam mattress cover that we use on the floor, making playtime much more comfortable for her fragile body. It's all of the little things to make her more comfortable that make a huge difference in her quality of life.
(They are so sweet together!)
At home, we are feeding her 3 times a day with the pump, which runs for about an hour at a time and then a continuous feed overnight. We also give her a bottle that is thickened before bedtime. She only drinks about an ounce or two of the bottle but it at least gives her a taste of something and helps her fall asleep. This seems to be working really well for her.
Again, I just feel so happy that she isn't sick anymore. We go to her Hematologist on Friday to check her levels. Hopefully everything will look good.