Sunday, May 1, 2011

What a difference two weeks makes....

Well, the Easter Bunny has come and gone and as April ends, I'm ready for my May flowers. Zoe actually got a jump on the flowers and took some really good Easter photos in field of wild flowers, more on those soon. But it's been a little over two weeks since we did our feeding study and Brooke and I felt like we were starting over from square one. Turns out, starting at the beginning is a very good place to start and we took a fresh approach to stuffing Zoe's face. Her feeding schedule now resembles that of a professional body builder, it seems like she's eating almost all the time, but she's doing well with it. The smaller bites approach just means we have to be more entertaining during meal time, but we're pretty entertaining people, just ask us. Also, Zoe's snacking pretty regularly and drinking A LOT more, she's getting the hang of her "coffee mug," I hesitate to call it a sippy cup since it much more resembles Mommy's travel coffee cups. Zoe's doing really well with more texture in her food, and all in all just not such an, "we suck at this" vibe in the house anymore. We've pretty much settled it in our minds that we'll need to move, when, where, and how are all up in the air. I'm starting to like the idea of finding a house currently under construction, with a floor plan we like, and then adding our own changes and needs to that. But I think it's too early to say how this will all end up. For our part, we've begun going through the house and examining what things need to be done in each room in order to sell. We even reorganized the kitchen today and got some things ready for what will promise to be a HUGE garage sale this summer.

Since I know no one here comes to read about me, I'll get back to our star. Zoe's really getting the hang of her stander and is using her hands to roll the stander around. She doesn't have it all down yet, and there's still some work to be done, but it's cool to see her moving like that. The stander, and movement in general will help her with both physical and mental development so this is a great thing. We recently saw a video of a young boy, Zach, with spina bifida who's great uncle had built a very small, very effective "wheelchair" out of bumbo. Anyway, I found Zach's Mom on facebook and we now have the contact info to see about getting Zoe one of these. I've included the link to the news story we saw, very uplifting to see things like this.

Zoe's also working on a new trick. Her PT, Lynn, has Zoe working on sitting up from laying on her back. It takes a little work, but again, I'd challenge anyone to sit up from a laying position without using your legs... not so easy. She basically anchors her at the hip and Zoe will "walk" herself up using her arm as support. It's a lot of work for Zoe right now, but that's how she'll get stronger, so she does it. Two things are guaranteed when Lynn comes to visit, the first, Zoe will nap and sleep very well that night. The second, anything that needs to "work itself out" will and a diaper change will surely follow. Lynn is so lucky to experience that EVERY time she's here. We're lucky to have Lynn coming to the house once a week to work out lil stink bomb.

One last thing about Zoe, she's learned what can only be described as "The Look." We don't know where she got it from, but it's a chin tuck and look up thing that is super cute, but she knows it.... oh she is gonna be a handful!!!!

 Wildflowers make me smile

 Why am I sitting in the middle of weeds Dad?!?
 Plastic eggs? Love some thank you.
 Mommy always makes her laugh
 She totally poses for the camera, what a ham
 The start of "The Look"
 "Half Look"
Full up "Look"

Thursday, April 14, 2011

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.



Thursday, April 7, 2011

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, 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.


 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

Sunday, April 3, 2011

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.


 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

Tuesday, March 29, 2011

All I need is a pair of wheels....

Today was the big day! Zoe's got her wheels and now she's a (wo)man in motion. Sorry I'm gonna do it...
"I can hear the music playin', I can see the banners fly.
Feel like you're back again, and hope ridin' high.
Gonna be a man in motion, all I need is a pair of wheels.
Take me where my future's lyin, St Elmo's Fire.
I can climb the highest mountain, cross the wildest sea.
I can feel St Elmo's Fire burnin in me, burnin in me."

Now the geek in me knows St. Elmo's Fire is more than just a great 80's movie, it's an electrical weather phenomenon in which luminous plasma is created by a coronal discharge originating from a grounded object in an atmospheric electric field (such as those generated by thunderstorms or thunderstorms created by a volcanic explosion). That being said, I like that it has always been seen as a blessing for sailors on their journey, because today, Zoe took another step in her journey. Down to Scottish Rite trucked the family, with Papa John and Grammy joining in the fun. We once again were whisked into our room in orthodics and Ms Abbey was there in short order with Zoe's new AFOs (braces), we did a quick fit test, did a nip/tuck on the braces so they fit just so, and next thing you know, Zoe's all braced up and wearing shoes. I was struck how much they looked like mini versions of the ankle boot I was in last year, except hers have cute little butterflies all over them with purple straps, such a girl! Soon, Zoe was getting fitted into her rolling stander, and it went over like a pregnant pole vaulter, not well at all! The idea is to strap Zoe's butt in place, get her legs straightened out and secured with velcro straps, then a final back brace and wooosh she's off to the races. Zoe however, was not happy with this from step one of the above procedure. Now, we had Scout there to assist with the transition and with a little bit of time, Zoe got the hang of standing up straight. She has yet to be overly thrilled with it, but it's only the first day. We took her out and checked to see that there was no unusual rubbing in her knees and braced areas, then Mommy and Me got to put her in. It'll take some practice, but we'll get it, that's all that needs to be said about that :-) Anyway, Zoe stays in this for about 15-20 min at a time, to get used to the idea, so D.O.G. is safe for a little bit, we aren't going to release the chocks and send her out flying just yet. We let her play with stuff on the table in front of her and get her used to grabbing things, which will I'm sure lead to grabbing EVERYTHING when she's in her chariot from now on, but enough from me, let's get to the star of this show!

 Ms Abbey doing a final fit on Zoe's braces, Zoe's still on board for this whole thing at this time.
 Scout makes everything more fun!
 "Why don't you sit up here and get braced, and I'll take some pictures for awhile, Dad?"
 Do you know how hard it is to feed a baby in a mirror? Neither do I, but judging by the amount of yogurt on her face, it can't be easy.
 Daddy and Scout taking a fail at cheering Zoe up, this was very early on
 Ms Abbey doing another check of Zoe in her Chariot!
 Zoe was so excited when it was over, she grabbed Papa John's Blackberry to text all his friends what she had just done!
 "That is NOT how we text young lady!"
 Zoe chillin at home in her new stander, I believe at the time she be rockin dem beats on her keyboard
 Rear view of the stander and the braces

So maybe this whole grabbing the wheel and learning to roll thing won't take all that long after all! She's got Papa Joe's tongue already at work on figuring this one out!

For those who read yesterday's blog, she is OUT tonight. All this and P.T. after she got home from Scottish Rite, she was waaaay ready for bed tonight. And to all of you, goodnight and thank you for caring enough about Zoe to sit through a silly proud Dad and his ramblings.


Monday, March 28, 2011

Old Man Moment

Great, I had my first official, Old Man "Get off my lawn!" moment. We were out front the other day with Zoe swinging in her swing when I heard the tires come around the corner, then looked up to see a silver mid 90's Mercedes sedan coming down the street, doing at least 45mph in a very short time. They drove by and one of the kids leaned out and spit in the general direction of my neighbor's mailbox. While we were still outside, I heard them coming from the other direction and started walking into the street like a traffic cop waiting for them to come around the corner. They do and I stop them with my hand and march right up to their car. I proceed to tell them, "I'm out here with my daughter and my dog, don't come through my neighborhood driving fast and spitting out the window!"  Arrrrgggghhhhh, I've become my Dad. Great, Zoe got the tongue thing from him, and now I'm running around the neighborhood yelling at teenagers.... What the Heck!?!?!

OK, this had nothing to do with Zoe other than the fact she was there, Big Day tomorrow!!  Scottish Rite, in case you somehow missed it. Maybe someone can let lil miss, "I don't wanna sleep" in on that!!  GO TO SLEEP KIDDO!

G'nite all
Okay, had to add this cause she's just too stinkin cute!

Sunday, March 27, 2011

T-Minus 2 days and counting

Yup, 2 days until Lil Rolly Zoe, becomes Big Standin Zoe P... I think that'll be her rapper name, then she can shorten it later to Zoe P, then ZP, and in a couple of years she can rerelease as BSZP. It worked for Sean Combs (Google it if you don't know) and we already have designs for the Zoe Pantiloni Clothing line, but I digress. In order to become "Big Standin Zoe P," she has to go down and see our good friends at Scottish Rite and get her ankle braces (AFO's) and her Rolling Stander (aka the Chariot) So Tuesday is the day folks, our lil girl is going mobile. It's going to take some getting used to, for all of us, but this is a big step for Zoe and we couldn't be happier, and yes, I will likely cry like, well a baby, when I see Zoe rolling around and standing straight up for the first time. This is what I can only expect to be the first of many future milestones for this amazing little angel. For those of you who don't know, 13 months is a bit early to be trying this, it's not like we can tell her to turn right and she'll understand, but the therapists feel she's ready for it, and her actions tell us she's ready for it. Zoe's a mover, she wants to be moving, to go get that "something" over there, and this is going to be the start of that. You will be getting pictures, no worries. I need to find one of those, "God is my CoPilot" stickers for her, because with God's hand on her back, Zoe can't help but move forward.

Until that time, here's a few pics of Zoe's easter egg hunt/hike through the Heard Museum....enjoy. And I'll leave you with this, from Jim Gaffigan. "Easter, the day Jesus rose from the dead, what should we do? How bout eggs?!? Well what does that have to do with Jesus? Allright, we'll hide em. I don't follow your logic?? Don't worry, there's a bunny."


 It's sooo early, why don't we get some coffee or something?
 Hellllooooo blue eyes
 The team: Zoe, Aunt Bethy (BG1), Heather and Lil Emory, Mommy (BG2)
 The hard part was NOT finding a happy smiley photo, the hard part was finding WHICH happy smiley photo to use, jeeez kid, cheer up will ya?!?
 Ummmm, they're not real honey, you can't eat em. Sorry, we forget you're just a baby sometimes, we'll tell ya next time.
Zoe just learned there's candy inside each egg, she's very proud of her eggs!