I was ready to go and have some questions answered, but I wasn't as ready as I thought I was.
It was a four hour appointment talking to doctor after doctor trying to get as much information in as possible. Jared and I went home emotionally wiped out.
I honestly don't even want to write about it because it was so draining and just so much, but the main points were that Jace had to start taking enzymes before every meal. So we had to get him on a schedule because he could only have a certain amount of enzymes everyday. We had to watch how much he was eating and we had to give him a bottle at least twice a day with formula added to it so that he could gain weight. We learned that he was having a hard time gaining weight and that he would for the rest of his life. We also had to start giving him vitamins everyday (they are gross and orange, they are my least favorite part of the day).
We also learned that he would soon need more lung exercises to help his lungs develop. Also he needed miralax added to his bottle because he would need to poop once a day at least to keep the mucus loose in his bowels, because they could get stuck in there and clog his system.