It’s late and I must drag my seriously fatigued self to bed very soon but couldn’t resist sharing some exciting news. Gavin’s counts look good enough to release us home for a few days. Naturally, we have to return on Sunday but we’ve decided that since the opportunity has come to go home we should definitely take it!
I know that four days at home can be so beneficial to everyone’s mental state, and Gavin is looking forward to spending some time outside. Tomorrow will be ridiculously busy, starting off with Gavin’s hearing test. We are desperately hoping for good news there. Once that’s done with we need to just pick up some meds, pack up and head home.
Bean was in great spirits today, although it was a difficult day, starting off with an IV insertion first thing in the morning. He was incredibly brave and barely flinched this time. He’s so used to having a GFR that he quite happily watched Backyardigans while having radioactive material pumped through his system. Later in the morning we had to replace his NG tube, this was more traumatic, as I know it’s probably terribly uncomfortable. He cried quite a bit, but knew that it had to be done and so resigned himself to it very courageously. I could not be more proud of him. We’ve come a long way on this journey, and as heartbreaking as it is that he’s become used to these things, it also has given him a strength that few children of his age possess.
Yesterday afternoon he had his ECHO, the results of which are good. The technician was absolutely amazed at how calm Gavin was and kept commenting on how she had never seen a two-year old lie perfectly still for it. It seems that the Bean has figured out the things that are worth fighting, and those that actually don’t hurt, so kept perfectly still for 20 minutes while she did the ultrasound of his heart. She said to Gavin several times, “You have a beautiful heart, Gavin, such a wonderful heart.” And yes, she’s right. I’ve said it before, but I saw that little, little heart beating for the first time when he was 6 weeks old, and he has proven it’s a strong, strong, heart.
Keep strong, greatheart. Can’t wait to take you home tomorrow!