Latest News

Yesterday Casey had a play date. Her friend Anjali came over with her mom, Rhitu, for a little while. I of course did not think to grab the camera. Casey seemed to have a good time. Anjali was so sweet, she would show Casey the toys. When we suctioned Casey she wanted to help her. …

What a big day!!! Casey’s nurse, Martiza, came over around 10. It was so sweet. She brought Casey a “Congratulations” balloon and a dozen yellow roses. Casey LOVES balloons & yellow. Very very sweet of her. After she got here we got Casey ready to go. We all headed to the celebration just before 11. …

So a long time ago I tried to cut Casey’s hair myself. It did not go well. I swore that I would never do it again. It was just to hard to hold her up with one hand and cut with the other. I used to cut my sisters hair all the time. I gave …

Casey and her friend had to reschedule yesterday evening play date. Isaiah had a running nose and started sneezing so we decided to play it safe and reschedule for another time. It is actually kind of an interesting story – very small world. Last October we took Casey to a Halloween party for the ECI …

Casey’s boyfriend and his family from California came over to visit last Friday. It was so nice to see them while they were in town visiting. He was not feeling well so Casey and him just took it easy while he was here. We had hoped to catch up with them later in the weekend …

Well, the Mini was not the answer we were looking for. It was IMPOSSIBLE to use and the leakage was as bad (maybe worse). We went back to the Mic-key a few days after trying the Mini. I am waiting to hear back from the surgeon’s office to see what they want us to try …

A few days before surgery Casey met with a surgeon to discuss her G Tube. It had been leaking so much and the site didn’t want to heal. The surgeon does not want to rush to have the G Tube redone. That’s a major surgery for anyone. Then when you add Casey’s pulmonary issues it …

The first few days after surgery Casey was pretty sore. We had to keep her well medicated (switching between Tylenol & Motrin around the clock). After the 3rd day we were able to start backing off on how often we gave her the pain medicine. Yesterday was the first day she was able to go …

Casey is in recovery and doing very well – there is a problem with her left ear so a small change of plans during surgery – more on that later…Everyone here has been great, and since intubation wasn't needed, we should get to come home this afternoon.