I was just thinking yesterday that things are seeming a little more like we are hitting a groove. There has been a whole lot of things for us to learn and it has been very overwhelming. I think that we have done a good job with that and have absorbed the information we need to know to take care of Johnny. In the beginning of things like these it is just so daunting of a task being under that cloak of ignorance. There seems to be no way in hell that you will be able to learn all the information in such a short period of time. Or even discern which is the right path to traverse. I felt that if we did not choose the exact right way that our son could be debilitated forever. That is a horrible feeling and a way to live. I know that all parents feel that in some fashion but in things such as these I think it has a whole other meaning behind it.
Katherine has done such a great job at keeping all this together that I am amazed. I know that without her Johnny would have been in trouble. This thing is so hard to get under control that someone has to be there 24/7. She has a chart and marks down everything he does so we know why or what to expect. I think now that we are where we are with this that we can possibly get into some sort of normalcy. I guess that term can be misconstrued to you're liking but I mean just doing normal baby stuff. Like taking walks, playing in the park, maybe going to grandma's.Stuff like that has been very hard to do for us. It has been impossible really. We really can't even leave him with a sitter. There is just to much that has to be done.
So he is doing much better with his feeding tube and he is GROWING! That is huge for him. He really hasn't grown since he was born 10 months ago. He is starting to eat solid foods which he needs to do in order to make things better for controlling his NDI. Soon as he is on mostly solid foods he will be able to control his water much better. That is a problem a lot of these kids have. They do not like to eat they just want to drink water. He does not seem to have that issue.
Really that is all that has been going on. Things are getting better. I know things may get worse or other stuff may happen but for right now we are happy with his forward progress. If there is one thing I have learned from all this is that you have to get involved and be the general in the campaign.
