Today was a good day. I have been looking forward to and yet dreading today. We had our follow-up appointment with Dr. Sklansky. I am all too familiar with the possibility of being readmitted. I know that one bad x-ray and we will be back at CHLA. But today was not that day. Today Elijah's x-ray was "excellent." Today Elijah was satting at 97 and he was pink. His echo results were positive and we are beginning to very, very slowly wean his medications. This will be a very long process, and it will probably take 6 months or so to complete. But it is a step in the right direction.
Elijah has been so traumatized from the long hospital stay that I thought today's appointment would be horrible. I was completely wrong. Elijah handled all of the tests and x-rays like a pro. He never cried and he never fusssed. We will go back in two weeks to repeat today's tests. If that goes well, we will start to introduce Elijah to a more balanced diet. He has been steadily dropping weight and I don't think he is even on the growth chart anymore. He had been barely on the chart, but following his own growth curve. This is no longer the case. It is my hope that he will do well returning to his previously fatty diet and we will be able to put some weight on. He is so, so skinny. He is back into 18month clothing. Everything else just falls off of his little body.
As for his attitude and affect, that too has steadily improved. He has been playing with his brother and he has even had fits of giggles. Now that is a great sound. Baby giggles can make anyone happy. His energy level is still a little low, but he isn't eating a ton so that is to be expected. He is sleeping better, although I think we have only had one or two nights where he actually slept through the night. Things aren't perfect, but they are better. I have to remind myself that we are in a period of transition. Once we get past these hurdles, he will be stronger and healthier.