Good News

This tube thing is pretty scary.  I remember sitting next to her on the hospital bed and the speech pathologist, nurse and doctor were explaining about how they were going to need to put in the ng tube.  And then they mentioned the g tube.  I remember crying pretty hysterically.  I didn't really take in anything that they were saying all the way.  I know that I asked all of the correct questions but it did not sink in right away.

It is pretty interesting the things that went through my head.  Questions that I wanted to ask but just whirled around in my head.  Questions like...can she go on roller coasters anymore?  Can she swing?  Can she go down the slide?  Can she still walk with it in?  Can she wear chapstick?  Can she swim?  Can she have a bath?

I did ask the important things.  Thing like...how do we eat dinner when she can't?  How do we keep her from putting food into her mouth?  How does it stay in?  How do we get it back in if it comes out?  How do we tape it?  How do we put the formula in?  How do we take care of her now?

I remember that I was crying at 4 am after she had vomited once again and one of the nurses was sitting in a chair in front of me soothing me and telling me that it was all going to be ok.  I remember that he said to me, you'll see in a few weeks you will be able to feed her with one hand and cook dinner with the other...You're going to do fine.  I remember that I really didn't believe him...AT ALL.

Well the other day, I was feeding her breakfast and had the syringe in one hand and I was blogging with the other.  Today, we were driving home from rollercoastering (one of Hailey's very favorite things to do) and I was sitting in the seat behind her in the car, feeding her with one hand and facebooking with the other.

We have gone to the park and she swings just fine.  She also goes down the slide fine as well.  She can still ride her bike and rollercoastering was just as exciting as it has ever been.  So giving her a bath is risky because she swallows the water...she can still shower.  I've read that she can still swim even when the g tube is in.  Her lips still work and she still loves chapstick.

She is still her and who knew that I could multitask this well!  Her behaviors are definitely more challenging and I burn out faster than I did before but we are getting used to things.

Hopefully when she gets the g tube, she will be able to go back to some sort of school program again and my burn outs will get farther and farther apart.  But really...It is true, We really are doing just fine.

And our biggest silliest questions have all been slowly answered.  But most of all, the good news is that she can still rollercoaster!