Sunday, June 8, 2008

It started with a chair.

I am sitting at our counter, with a cup of fresh coffee in hand and some nice, calm, uplifting, soul clearing music on. I am watching Ella, with a tired ponytail on top of her head, stuff food into her little mouth. Her eyes are wandering, because she doesn't have glasses on yet. I wonder how much she can see me from back here - so, I smile. She smiles back. She is joyous today - even more than normal. You see, for the first time in her short life, Ella drank out of a straw a few minutes ago. And to you, I know that has little significance, as Owen drank from a straw successfully at 6 months old. And here we are, 15 months old and she just FINALLY figured it out. It is just a straw. It is pink and bends a quarter of the way down. It is cut shorter, to make it easier. It sits in a stubby yellow cup with a worn yellow lid. It is covered in yogurt and banana goop. It holds some weak juice mixture that is nearly tasteless. But, it worked. We sit with therapists 4x per week and talk about this and that and work on this, that and the other. We love them and they love us. They have all fallen in love with Ella, just as most people do. They are constantly in awe of how she catches up, her newest dance moves, her new sound, how fast she recovers, etc. I would hate to be the parent of one of the kids who doesn't come along as fast as Ella has - this has been hard enough. But, as far as feeding, we are at a stand still. She has mastered yogurt and jarred food. She is eager to stuff finger foods in her mouth. She snatches "adult" food of our plates and devours it down to to the smallest of crumbs that we can't believe she can even see. Right now, she is sucking on a mesh bag filled with banana. These particular "feeding accessories" should have a blow up tub that comes with them. There is no way to slurp a mashed up banana and come out clean. Anyway, the food consumption is pretty average for her age. (I never thought I'd be excited about someone calling my child 'average') But, it is the liquids that keep us dependent on a button, so carefully placed in her belly, that connects to a short tube, which holds a syringe where we pour the milk. I want to get rid of that damn tube. Yes, thats right, I said damn. (Please do not comment on the use of that word). I want her to taste what goes in and decide for herself that baby formula, even the expensive organic kind, tastes like dog food. I want her to be able to take medicine by mouth and not mind being sick so much after she tastes the yummy pink kind. I want to forget her tube at home and know its not an emergency and she will be able to drink some other way. We have tried 50 sippy cups, fat straws, skinny straws, cups, bottles, spoons, etc. I talk to other mom's of kids with G-tubes about what to try and what worked for them. We make different potions of yogurts and milk and juice and put it in plastic honey bears with aquarium tubing. Our therapists order expensive things online that we try for a week or two, but we just can't get her to take in the liquids and get them down to wear they want to go. Months ago, I bought a box of straws at the request of the speech therapist. We cut some of them short and started using them as droppers into her mouth. It is a very slow and frustrating way to feed a baby, trust me. It would have taken 2 hours to do one feeding!!! So, we try that from time to time, always prepared for her to suck from the dropper, where we would then put the straw in the cup and hope she reenacts it and gets a big gulp. But, she never did. And this morning, as I'm making coffee and toast and tiptoeing around to keep Owen asleep, I can tell Ella's mouth is dry from all of her Cheerios. I looked in our baby cup drawer, but there was nothing clean for her. And as I looked at my full sink of dirty dishes, I thought maybe we could try the straw today. And I didn't cut it and I put it in this strange juice and I felt a cold sensation on my fingers, as I held the straw up to her mouth. The juice was going up and down in the straw and her short little cup was filled with a yogurt-Cheerio mix. But then, she smiled such a big smile that she couldn't keep in and a whole lot of liquid spilled out. I couldn't believe what I was seeing. She had to have gotten some juice in her mouth to spit it out, right? After a minute or so, she demanded a refill, which I eagerly gave her. And by the end of it, she had consumed about 3 ounces. 3 OUNCES!!!!! That is half way to eliminating 1 tube feeding a day. That is a big step to a big goal. And maybe it is a fluke, which we have had before with other new cups and fads, but this required a skill that she wasn't able to master without going through the pain of surgery and the greater pain of time. And so, we will pray and try again at lunch and see what this kid can do.