Peaches for Free

Is it weird that I almost feel upset that my son is not a huge fan of peach baby food? Today he tried peach for the first time and the response was meh. He even pushed it back out like what is this stuff you are giving me. I LOVE peach baby food. I was still eating it every now and than at like 12 and I am pretty sure that I will be finishing any leftovers that he has from the stuff now.

It was so exciting when George did well at the swallow study but now faced with what we are actually able to do, it just seems like so little. Every bite is such a huge deal but its such a little thing. And its so depressing when he doesn't seem interested at all. He looks at me like why are you trying to put this stuff in my mouth. The dread comes pouring back in that maybe he's just going to have to eat this way for the rest of his life. Maybe I'm going to have to say "No rough housing you might tear out George's button" when he wants to play with his future siblings. Maybe he wont have siblings.

We are thinking we want more children and my doctor gave me the name of a geneticist with Boston College to get in touch with. That was two weeks ago. In a way I'm terrified of the minute possibility that maybe, just maybe this is a genetics issue. What if this is the only kind of child I can have? What if every one of them is a major risk for having some severe medical issue that makes it impossible for them to be just like other kids. Than what? Do we go forward fingers crossed that the next child will be physically fine? I don't think I could handle another NICU/PICU baby. Those first two and a half month's where George lived in the hospital was so hard. Every day I fought a nervous breakdown. All of a sudden your a mom and now you are responsible for another human being. In a way that other mom's luckily don't have to be. You are the one saying yes I think we should do this surgery. And every day you visit this child that barely feels like he's yours because all your contact is so sterile and observed. And you are still so naive that you think the doctors and nurses know what is right and what is best because they went to school for it, they see it every day. It took me a while before I realized that while they may have seen other children with conditions like my son, they weren't my son. Every child is going to be unique. There is no one size fits all with health care. By the time I went back to the hospital I knew that I know George better than any of them and while they are trained professionals and I should take into consideration their knowledgeable ideas and suggestions, they are not going to be 100% right and most of the time it is just an opinion.

To think if I had listened to 75% of the the doctors I worked with George would have a tract right now. And for what? The off chance that he might need it. He may be noisy but he breaths just fine without one. The last thing I needed was another foreign object in his body that I had to watch for complications just because there is this slight chance he may need one in the future. That is one thing that I am proud I gave my son a chance with. That I fought those doctors because I knew he could do it. While I understand that for some children (especially other mylo, arnold chiari sufferers) this is something they need to survive, George didn't. And so many doctors ignored that fact and got so caught up in well he's probably going to need it so lets do it now so he doesn't have to have anesthesia later. If all the doctors had said yes it would have been a different matter but I paid attention to the pulmonologists who told me of the constant repairs and the ENT who held out as long as possible. And look at George now breathing on his own and trying peach baby food. :)