L is for Learning... also Liechtenstein

So I learned a lot yesterday, I learned I don't know much. Have you ever taken a class and thought you were doing well until you get handed the final and you feel like you walked into the wrong class? Well that's somewhat of how we feel today. A lot of information is still floating around in our heads, and it's not as though Zoe is in any danger, but damn it feels like we took a fail somewhere along the line.

Ok, let's start at the beginning. We went to Scottish Rite on Wednesday for a thorough study of how Zoe eats. She sat in a high chair and ate, which for her, made it the greatest visit to Scottish Rite EVER! (what she didn't know was that there was a hidden agenda) Her food was laced with barium, now don't go getting all Machiavellian on me, it wasn't poison, it was just so we could see it go down better. Zoe was in front of a detector panel and a doctor used low level flouroscopy imaging to create a rather cool looking video of Zoe's internal organs as she eats. We literally stood there watching her chew up pieces of food and swallow them into her stomach, it worked on milk too, we could see it slide down her esophagus (sorry, for my truly southern friends, her gullet). Then while Daddy got to go back to work, Mommy and Briana, her speech therapist from ECI, went back later that day to get the results. This is where we both start to feel the "Mom and Dad of the Year Award" start to slip through our fingers. Turns out, Zoe isn't doing it right. That is to say, what we thought was her moving food around and getting the hang of chewing isn't really getting the hang of it. Short story long, when we chew, we move food to the back of our mouth and use our big teeth to chew up the food, also your tongue forms a bit of a bowl to store food, these are all natural, and it makes for a bit of a holding area until you are ready to swallow. Zoe as stated, keeps it up front and doesn't make that "bowl" with her tongue, she keeps it flat. Now I challenge anyone to put food on the back of their tongue, keep it flat, and see what you feel like doing. Bet it's not pretty. So that's one. Also, when she drinks milk, there is another "holding cell" before the food/drink goes past your epiglottis and into your esophagus, some of you are having horrible flashbacks to anatomy class and for that I'd apologize, but it's too late :-) Anyway, milk is staying in that holding cell and some is leaking into her lungs when she breaths, not good. Aaaand, the milk does not move efficiently down her esophagus. Oh, and she hasn't been getting enough fluids for a child her size, so great, now we are the parents who dehydrate their kid...bye bye MADOY Award!!

So what does all this mean? Is Zoe ever going to eat right? Will her medulla oblongota allow her cricorpharyngeal sphincter to open and close properly? Will Britney Spears new album revive her career? Well okay, some things just can't be answered. But what it means is we have to be more diligent at dinner time in making sure she gets food down the right way, we need to add some thickener to her milk to get it to go down smoothly, we are feverishly working to get her off the bottle(trying to cut down on her cigarettes too) and into sippy cups, and getting her more fluids. All of this doom and gloom aside, the thing they did say is that, none of this is new for children with Spina Bifida, these things happen as a result of her slowed physical development due to the nerve damage. Now I don't want this to become the standard "excuse," I don't want it to be "okay" that Zoe can't do this or can't do that, "Because she has Spina Bifida." But we have to understand that some things will come with more difficulty, some things will take longer, and that is just facts. One thing I won't do is limit my little girl, she's amazing and she proves it everyday! She has a Mom who would do anything for her and a family that loves her without question. So we will all come together and push through this latest challenge, because that's what this is, and life will continue to throw them at all of us, it's how we face them that makes us who we are.

Cheers,

J