Tuesday, November 24, 2009

A child's view: Time to eat

See, I've been working with this lovely lady, Juliana, for the last two years. She does some really fun stuff with me, like letting me swing from the rafters whilst wrapped up in a sling made of a kaleidoscope of colours. She lets me muck around in the ball pit. She does these stretches with my neck muscles. And then, unfortunately, at the end of our hour, she lies me down on an incline and gets this vibrating tool out which she puts in my mouth, I understand to improve the sensations I'm feeling. And then she works on getting me to swallow things, like food, heaven forbid, and we play games so that I put things in her mouth instead of mine so I can be the one giving her therapy for a change. Some people we meet get it all messed up in their heads and it's really quite funny. What with our hopes for the trach coming out in the next few months (I'll be writing on my feelings on that front pretty soon just so's you know), everyone thinks that it will mean I'll be eating with my mouth. And that's a scary thought as if they think the purpose of my trach is for feeding, then they really do need a bit of education, because, stick food down my trach and well, it'll just go straight into my lungs. Not a good idea.

So anyway, I have absolutely no objection to putting things in my mouth, especially Callum's leftover bottles or snippets of food. I've also recently discovered that there's a Victorian chest in our living room whose handles taste mighty fine too after Callum and I discovered how to unwind them. (One of those instances when Mama ran very fast. I like those as she's not much of an athlete it has to be said). But here's the thing. I'm really not that keen on this eating business. I mean, I can swallow and all that, but why would I want to put food in my mouth, go through that whole effort of munching away and swallowing to fill up my stomach when I have this perfectly good Gtube in my stomach that gets filled with liquid meals and fills me up beautifully. And anyway, I can't smell and apparently things taste much tastier when you can actually smell them, whatever that sensation is. Still, I just don't get it. Mama hopes I will one day, but we'll see...

1 comment:

Kristina said...

Oh Reuby-Reu, I am so proud of you and all that you have done!

My goodness you are walking just like a big boy now! From the first moment I saw you at 13 months, you could only do a rollie, then we worked on crawling, and finally walking with some help.

The fact that you are walking independenly now made me sob like a baby to see how far you've come!! If you can conquer that, I know you can conquer any other obstacle life brings you, such as learning to eat.

I know with Mama and Daddy and Juliana, there is no shortage of people to help you. You are my hero.

I love you, Reu. Forever.