It has been a busy week, and I am finally getting a chance to write. John is doing very well. His therapy is going so good, and we are seeing such progress in him everyday. Wednesday we had an apointment with his nutritionist. We are working on a plan to get him to start eating by mouth. She is hoping to get his feeding tube out in 9-12 months. I would be so excited, but will just continue to take one day at a time. We have to cut his calories back for three weeks, and he will also be given a medication to stimulate hunger. They plan on him loosing weight, but he now has enough fat stored now that he will be fine. We then met with another neurologist on Thursday. The other one we met with was wonderful, but he was not affiliated with Children's, so I wanted to meet with a neurologist at Children's. He talked about some possible tests for the future if the genetic test comes back negative. He also had some ideas of programs for us to get involved in at Children's which is another reason why we went to see him. I have learned that it is so easy to do everything at the same place, so they can all communicate with each other, and I know no tests will be repeated.
We finally got to have our first play date this week. It was so nice to see Sienna playing with another kid. Her friend also has a little brother so it is good for little John as well. We met at the science museum which was so neat. I love the museums here in the city, as well as the indoor playgounds I have found. Sienna has another playdate with a different girl on Monday. So hopefully we will begin to make some new friends.
Another quick story, John has been very interested in fish tanks lately. He has been getting his little pointer finger out again, and pointing at them, and talking to them. Not sure what he is saying, but it is so nice to see him do this. So being the mom I am I got him a tiny little fish tank. Sienna decided she would teach him how to take care of the fish, so she gave him the instructions. He then put his arm around her, turned and gave her the longest, biggest hug. It was so sweet. She is always trying to hug on him, but he is never interested.
We have a very busy week. We have 5 doctors appointments, and 2 therapy appointments. So hopefully I'll make it through the week. Wish us luck!