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

I got yer comments right here

So during a Skype session with my Dad, in what can only be described as "internet gold." (the man may have truly lost it) it came out that many of you are trying to comment on some of the blogs but are unable to. Well tough, I know what's floating around in my Dad's head and I'm saving society at large by not telling him how... Fans of the Office will recognize this url, http://www.creedthoughts.gov.www/creedthoughts Okay, I'll leave him alone, it's Papa Joe's Birthday today so I have to give him some abuse. Now if you'd like to comment, and I actually do welcome them, from what we could gather, you have to create or use a gmail account. Seems to be the only way. Zoe had a great day at CLC (Christian Learning Center) she goes there on Thursdays, it's sort of a mother's day out program, in our case it's a Grammy's day out. Gives Grammy a little break during the week and gets Zoe some interaction with kiddos her age. As is the norm with her, she is just so happy in school and all the kids seem to know how special she is, her teachers say all the kids are so gentle and friendly with her, it's a real pleasure to see the kids and especially the teachers just light up when she gets there. Chariot training is going well, okay, she didn't learn the fine art of the wheel yet, but I think getting her rolling by the end of the weekend was a bit ambitious. Here's a couple of random shots for your viewing pleasure.

Cheers

 Momma and Zoe in the pool last summer, looking forward to more pool time soon

 Zoe at the keys, going to be just like Mom

 Caught watching Seasame Street on Grammy's bed

 Her first swing, she loves that one too!

 Sitting in her little red wagon, courtesy of Pa Pa's estate

Chillin in  her favorite rocker at Grammy's house

AFO Sighting

Okay, while Mommy's away in Boston with her choir and Daddy is sans camera, I'm going to take a break posting pics of Zoe and launch a full fledged explanation into AFOs and what they are and what they do, as requested. AFOs or Ankle-Foot Orthoses or as I like to call them, AFOs have nothing to do with little green men, silver discs that hover in the sky, and are not made in Roswell, New Mexico. AFOs are quite simply braces that help Zoe's feet align better and make wearing shoes a real possibility. The AFOs are made of a hard polymer material and they are custom made to fit Zoe's foot and as you'll see below are very striking. The bottom straps keep her foot in place and the top strap provides support for her shins. These then slide into her too huge for a 13 month old shoes and poof, she's got support while in her stander. As of yet she is not standing independently. If you were to hold her and put her feet on a flat surface, her legs would buckle and not support themselves. Now, we don't know if or when that will change, we are being told she is expected to be highly mobile, so I'm expecting that as well. Look for Zoe in the 2020 Olympics, she'll be the one doing the 100M dash. It's funny how this works, but I was reading this for something else and came across this passage....

Hebrews 12:12-13 Therefore lift your drooping hands and strengthen your weak knees, and make straight paths for your feet, so that what is lame may not be put out of joint but rather be healed.

Not much more to say after that.

Cheers

 Criss-cross straps for super support

 Too cute for words, we got to pick the design and color for the straps

More of the AFOs 

Her super cute and verrrry wide Stride Rites