Christmas Winner!

Having an almost 2 year old is lots of fun on Christmas. Thank you to everyone for the lovely gifts. Enjoy the video of Zoe's favorite new toy (thanks Uncle T and Aunt Virgey!) Love, Z Parents

Christmas Holiday

The cards are out the door so you should be receiving them shortly. Looking back on this entire year - wow! How far we have traveled. I wanted to share with my family and friends who have helped us along this journey, thank you for being a part of our experience. We are blessed to have walked the path with you. The coming year is filled with blessings unknown. Zoe continues to teach and amaze us in what things are possible with faith and action. We wish all of you blessings of health and prosperity in the New Year and much love from all our hearts!

Love, Z parents

Thanksgiving

We pulled off the full on Thanksgiving feast. We had Jeff's cousins Danny and Kristin as well as their brood over for turkey day. We bought the turkey fully cooked (it was predictably dry by the time it was served, but I had copious amounts of gravy to counteract). Our fabulous feast included stuffed mushrooms, crackers & cheese, veggies and dip, mini quiches, turkey, gravy, mashed potatoes, asparagus, salad, escarole meatball soup, whipped carrots and parsnips and cranberry dressing. Dessert was apple betty and fruit salad. Everything was delicious and we all hung out at the park the next day. Nobody gorged themselves though a few had naps afterwards and games of Taboo went into the evening. All in all a fun family time!

Update on Zoe's Program

This is the update everyone's been asking for. We survived another trip to Philadelphia and Zoe has a brand new program for us to execute. Here are some of the highlights of her accomplishments:

Weight gain: 4.5 pounds (goal 5 pounds, previous 6 months gained only 1 pound)
Chest growth: 125% of normal
Head circumference growth: 125% of normal

While we were in Philly, Zoe decided to pull herself to standing and let go - several times for several seconds (5+ sec.). Her balance has improved, her creeping/crawling is lightning fast when she wants to motor but more often she prefers to cruise along furniture. Independent walking is getting closer and closer.

Zoe has become more and more vocal and is more consistently responding yes or no to our questions and comments. We will be focusing a lot on her reading program to make sure the print size is comfortable for her and that the content is where her interests lie. We will be resuming the Intelligence cards but it will be based on choices Zoe makes so I have to figure out how I can manage that process and we will be beginning more advanced math with her.

We'll be starting a new respiratory program with her to help Zoe take deeper breaths. This will be in addition to the 40 masks we do with her every day. We are reintroducing patterning and we're continuing with the Overhead Ladder program. She'll still have a marathon day of creeping and there were only minor changes to the nutrition program (we're still doing a 4 day rotation of a diet that eliminates the 10 most common allergens).

All in all, we're very pleased with the progress Zoe has made and the new program addresses exactly what we wanted to focus on. We have no idea how we'll get it all done, but we'll move forward and do our best.

The 3 main focus points are her breathing, walking and reading. And that's exactly our priorities as well.

Every has been asking how they can help and the best way for now will be with the Intelligence cards but I will have to give assignments for the categories and they'll have to be completed within a week. If you are interested in joining or continuing on the Intel team, just let me know and I'll figure out what changes need to be made.

We've been so thankful for everyone's support. We could not do this without all the help from such wonderful friends and family. We love you all very much!

Halloween catchup

Now I'm trying to catch up on my updates. Don't want to carry over last year's business into next year. Halloween was quite fun. Zoe really enjoyed dressing up in her costume - she was a lioness, and quite fierce! We did not go trick or treating since she does not eat candy. She did however attack the cat which was hilarious. Dan and Steph came over to check out the clawed killer and we had loads of fun. Enjoy the pics - and gggrrrrrr! She's a maneater!

New Zoe's Meow Cards!

I know, I know - I'm sooooo behind on updating the blog but it's been a whirlwind (when is it not?). In the next day or so, I PROMISE I will post all the exciting updates from Halloween to Thanksgiving as well as report on our last revisit to the Institutes.
For now, just wanted to promote my fabulous friend Laura who designed 15 new sets of Zoe's Meow notecards (above) - which make perfect stocking stuffers or for yourself if you're running low on thank you notes. The link is above at the top right of the blog or you can call her directly on (888) 246-2004.
For those who do not know about how Zoe's Meow cards got started, my amazing friend Laura wanted to do something special to help Zoe. She originally created 2 sets of greeting cards with contributions from some artistic friends and when the cards are sold, she sends us all the profits to help offset the costs of Zoe's Intensive Therapy Program (which is expensive, extensive and virtually uncovered by insurance).
Laura also designed our Christmas cards which are about to be sent out - so stay tuned to a mailbox near you! If you EVER need something designed or printed, big job or small, her work is outstanding and her commitment to customer satisfaction is unmatched. Please consider using her company and tell her it's because I recommended her. Love - Z Parents

Big Hair, Big Lips, Still Cute

For everyone who helped write books for Zoe - thank you so much! I'm still catching up to get all of them done. We're working on Zoe's progress report (66 pages of fun plus video!) so if we haven't responded recently, sorry... we'll be done in a few more days and I can catch up on emails, calls, etc.
I don't know what was going on in these pictures but they were kindof fun. You know her parents grew up in New Jersey due to the 'Great Big Hair' and you can tell she's a Southern California gal because that other pic looks like she got collagen lip injections (she doesn't look very pleased with the results either!) and the last one is just cute.
She's cruising everywhere and is very, very close to standing independently. The medullary ramp program helps develop her balance and that's the only thing that's keeping her from graduating to a bi-ped like the rest of us. Soon, soon... stay tuned.
Love, Z Parents

Recent pics - brain booting down

I don't have any great inspiring update. I'm pretty darn tired now. I'm sorry it's taken me so long to add some blog posts. Here are some recent pics to enjoy. Love, Z Parents

S.O.S. on Homemade Books

I'm so far behind on Zoe's reading program. I did the math - in order to catch up before we return to the Institutes, I need to make around 4 books per day. That is not possible for me to do. The Intelligence team is an enormous help with teaching Zoe through pictures but the reading program takes precedence so I must concentrate my efforts. I have to draft 'stories' that are about 6 sentences long. If any of you are interested in volunteering or know someone who might be, I'd be most grateful. I'll write the stories on posterboard and find the pics. All I ask is help in drafting the content. I have samples I'd be happy to share. Here's a picture of one I completed. Contact me directly for details and please say a prayer that I can make a dent in this task. Reading is the cornerstone for Zoe's intellectual development program. A good case can be made that any child will go far if they have a love of reading. I'll do my best and pray for a miracle!

Economic Discourse

I'm in a posting kind of mood so I thought I'd attempt some humor and add a few gratuitous pics for fun. Enjoy!

Hey kids - there's big problems on Wall St!










Have you heard what's going on?










We should come up with a plan...



Think very carefully, this is important.



Hey! The lawmakers decided to use $700 billion tax dollars to solve the problem - what do you think?

Size doesn't matter

Last weekend, Jeff's cousin Jason and his family were in town for vacation. They have an adorable 3 month old little boy, Kai. Now, the last time we took Zoe to the Institutes, I was a little stressed because Zoe was a bit light in the weight department (are we even related?). I know she is predisposed to being underweight but she was looking too thin even with that in mind. Last May, she tipped the scales at 14 pounds at 15 months old and nothing to spare. We set a goal for her to be 19 pounds for her next visit - a pretty aggressive goal considering her progress to date; that's another 5 pounds in 6 months but we made significant changes to her diet. You can imagine the celebration when we took Zoe to the pediatrician's at 18 months old and she clocked in at 17 pounds, 13 ounces. That's almost 4 pounds in 4 months - unbelievable success!.....Then her little cousin Kai rolls in. Three months old and Kai, the little Michelin baby is 16 pounds! My jaw just dropped - size is so relative.

The Magic of Masking, the Music of Laughter

"Who is that masked baby?" One of the most important elements of Zoe's program is her respiratory masking. We place a small plastic mask over her mouth and nose many times each day (ideally, 45 times) for 30-45 seconds. The concept is similar to breathing into a paper bag for someone who is hyperventilating.

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Rebreathing carbon dioxide (for short, safe periods) has many, many benefits for Zoe. It forces her to take bigger breaths during the time her air is restricted and therefore, increases her lung capacity. The carbon dioxide also dilates her blood vessels which after the mask is removed, allows her to get more oxygen to her brain.

The intended outcomes for doing this are - greater endurance, more robust immunity, stronger voice, better chewing/swallowing, increased mental clarity/capacity. The list goes on and on.

When Zoe was younger, her laugh was silent. We would tickle her or do something funny and she'd give this wide open mouth smile and her eyes would shut tight with joy. She was full of laughter but no sound would erupt. You know when you laugh so hard you can't get your breath and your stomach hurts and only tears come out? That's what it was like for her.

Now she laughs out loud all the time and shrieks with delight. And if laughter is the best medicine, certainly hearing a child's laugh is healing at its best. Hope you enjoy hearing a little of her laughter - it's not her loudest laugh but it's the most recent on video (and ignore the annoying Mom voice on film). Hahaha - keep laughing!

"Babies Gone Wild" or "Uncle Tasty"

This one was just for fun. The last time Zoe saw her Uncle Dan, she was strangely drawn to him. She found him irresistibly kissable and I thought this video was pretty darn funny. So enjoy the short clip below, "Attack of the french kissing baby."

Hats off to the Intel Team!

You know, not everyone can pull off the 'hat look'. But with the right sized hat, Zoe displays the many shades of her personality. So I thought I'd include some of my hat fav's with her and say "Hats off!" (or maybe I should say "Hats on!") to Zoe's Intelligence Team. (And hats off to cousin Carol who picked yet another winning fashion accessory for Zoe below!)

Every time an Intel package arrives - and they're easy to spot - I jump for joy. These cards are not only creative and build Zoe's intelligence, when I see them, I see a big clock on every envelope - because each pack of pictures gives me several hours back of my life, which I can redirect to the million other things I need to do or just enjoy a little time with Jeff and Zoe. Zoe sees fun pictures - I see a slice of my life I just got handed back to me. I'm not kidding you when I say it brings tears to my eyes. Time is our most precious commodity around here.

I've also decided after we've received 10 sets of cards from an Intel Agent (or Intel Team), we'd like to recognize your contribution in a special way. I'm not sure how yet, but it's in my mind... and I'm keeping score.

Special thanks to our current top Intel producers:

Nancy and Brigit - 2 sets in one delivery! Rock stars!

Dan and Steph - Steph, Olympic Gold, you always set the bar - Dan we know you're riding Steph's coattails

Andrea and Chuck - Bravo! Chuck - we know Andrea does all the work but we really appreciate you for marrying such an amazing woman.... for us.

More thanks to our other card producers; Patti, Juji, Kelly, cousin Dale (your secret is safe with us) and "Team Joanne" - keep up the good work!

A note about Team Joanne - Jeff's Mom has assembled her own team of people who have committed to making these cards. Wow! I field many questions from this team of Intelligence Agents but their verve is impressive and unquestionable.

So far, Zoe has already seen about 300 cards - and she grades them all on her own sliding scale of interest and attention.

I was so proud of myself when I completed a set of cards "Ball Games" and it had pictures that represented different sports; bocce, football, tennis, soccer, bowling, etc. Even with enthusiastic presentation they received mild yawns which later turned to expressions of annoyance and finally a complete refusal to look at the cards. I asked her, didn't she think "ball games" was interesting? And I held up 2 cards for her to point to her answer (Yes or No). The answer was brutally emphatic, "No! No! No!" Ouch.

Anyway, Team Joanne's first set of cards arrived the other day, "Famous Hispanic People" and I thought to myself, who the heck came up with that idea? The next day, Jeff informs me Zoe LOVES the set. Every time he whips them out she smiles and laughs. Gold star awarded by Judge Z. Keep 'em coming - I guess you know more than I of her preferences!

This week's winning card set:

Zoe's mad skills

There are lots of people who are on Zoelia's team of champions, cheerleaders and supporters who have never met her in person. This includes people in our family and friends who live far away (and even some who live nearby). So many people have reached out to us to be a part of 'Z experience' and we've been very blessed.

These people are the reason I created this blog. So those who wish, can stay more in touch with what goes on in her life and with all three of us. It allows you to find out what's new and it allows us to give updates without worrying about time differences or intruding on each other's busy lives.

Truthfully, it's another demand on my time in an already filled to the brim week. But I find the time and I find a way because of all of you. Because Zoe has drawn you into her life and you have chosen to be a part. And she deserves a rich life filled with people who know her and love her - don't we all?

Of the people who have met Zoe in person - most have still not heard Zoe speak. When Zoe is around other people she focuses more on paying attention to what's going on around her. She becomes the careful observer. I think this is true of a lot of kids her age.

But when she's at home or in the car and she has the opportunity, she babbles to us, herself and her toys. And her daily chitchat is peppered with words and phrases. And this is great cause for celebration!

Half the kids with Cri du Chat don't have any verbal language. Half of them don't speak a word. No one knows exactly why - verbal language development is a complicated affair. It could be the problem in the larynx that causes the high pitched cry. It could be a disconnect when language gets processed in the brain. It could be because these kids usually have low muscle tone (everywhere really, but specifically) in their jaws, lips and mouth that make it too difficult to form words. Or it could be because they have little tiny chests and poor respiration so they just can't get enough air to pass over the vocal chords. Thirty to forty years ago it was believed these kids were entirely unable to communicate at all, but things have changed.

But that's still a terrible fate... because these kids understand every word. Their skills of comprehension are VERY sharp and their memory is sharp too. Could you imagine how difficult that must be? To understand everything that's said around you, to remember it all too, to know what you want to communicate and not be able to say it? And worse... to have people treat you like you're irretrievably stupid because you can't use words with them? Every time I think about it, I'm overcome with grief - it must be so frustrating and disheartening.

Sidebar story - I remember years ago I was traveling in Italy. I was traveling on the train south to Venice and I didn't speak Italian (still don't). What I remember about Italians is that far fewer locals spoke English than in most of the other countries I traveled. It's amazing how far you can get in almost any country with just knowing "hi", "excuse me," "please", "thank you", "how much is?" (then pointing), and "where is the bathroom?" Well into my car on the train entered an older gentleman and then perhaps one of the most gorgeous men I've ever seen (Luigi) and they smiled at me, and I smiled at them. After my run at "hi, excuse me, please (with a point offering them a seat) and thank you" (when the older man offered me a soda) - we were done. I didn't need to buy anything so "how much is?" was out the window and I knew where the bathroom was so that was it. The three of us actually tried desperately to carry on a conversation - they knew NO English and I had used up my Italian within 15 seconds. We were on the train for hours amiably trying to communicate, drawing sketchy maps to indicate where we came from. But it was really eye opening - when you can't share words, there is virtually nothing you can exchange with each other that has meaning. I had to struggle with 2 hours of trying to communicate and not being able. No harm done and it was pleasant enough. But what if I had NEEDED to communicate something..... What if you had to go through life like that?

So when Zoe speaks, even though she does it everyday, it's a BIG deal to us. And we've learned to trim back our excitement and sometimes stay quiet so she'll continue chatting some more.

And sometimes she even shocks us and makes us laugh (all kids are great at this). Yesterday, Jeff was holding and playing with Zoe when he turned to me and said, "You know, she's making a lot of funny new sounds today." And she smiled at him and said, "I am!" and cracked up. Today Jeff took her out for a walk and after awhile he asked her, "Do you want to head back now and see Mommy?" and she was quiet for a few moments and then belted out, "Yeah! Momma!"

It's a big deal. When you start from where she started, it's a very big deal.

And we'd like to share how special that is with you. So enjoy the video clip in which Zoe says a word (and exhibits some other fine skills). And thanks for all your love and support. ~ Z Parents.

Overhead Laddering and Intel Update

Zoe seems to be getting into the "swing" of things with the Overhead Ladder. At first, she just needed to practice standing and holding on to the rungs. Now she's beginning to use her hands to hold on and her feet to walk forward. It's a bit tricky because Dad needs to be near enough to catch her if she falls but scoot out of the way when she walks. And the ladder which is adjusted for her height is too short for us to sit up straight underneath. Here are some pics of her on the ladder and some afterpics that shows how she feels about her performance.

It's a bit of a mad hair day but that's what happens when you're working up a sweat! I've made about 10 sets of Intel cards myself and it's gotten a lot easier to crank them out. To everyone who has sent us cards, "Bravo!" they're fantastic. To everyone who's still working on them, take heart - that first set's a grind but look at that face - totally worth it. Let me know if you've hit a roadblock or need some help. Over and out!

Picture Cards and Food Fights

Well, we've been working furiously to make picture cards to help build Zoe's intelligence. It is challenging and time consuming but she's certainly cute and charming so I guess she's worth it. She eats through 10 new cards a day - sometimes literally, you should see the teethmarks! Zoe's Intelligence Team will indeed be a big help and they are our new heroes.

Shamefully, we've not given Zoe that many opportunities to develop self feeding. We just don't have the luxury of the time it takes for her to play with the food and for us to clean up the inevitable and artistic smearfest. But every once in awhile we let her have a go - the pics are an advertisement for a salmon puree facial and hair treatment. All the spas will be offering this next season!

Extreme Makeover: Home Edition

Well - it's finally here. The hulking commanding mass of our new living room furniture. We had a carpenter build us an Overhead Ladder for a physical therapy program we are starting with Zoelia. It is the equivalent of an indoor Monkey Bars. Basically, she will stand with her feet on the floor and hold on to the rungs of the ladder for support as she practices walking. Eventually (years from now), the ladder will be adjusted high enough so she'll swing from the rungs back and forth like a monkey.

ALL the kids on the block will be wanting one of these so watch out for us trend setters! Ten feet long, 4 and a half feet wide and 6 feet tall, it is built to impress!

Truthfully, at first it depressed me. We had to rid ourselves of all the main living room furniture to accommodate the wooden largesse of our new design centerpiece.

Well, I've moved on - life's too short to be wistful so I got over it and decided to look on the bright side. It's a rock solid piece of construction. So all three of us play on the jungle gym... and it is kindof fun. It's great for stretches, hanging, climbing, swinging and pull-ups. Ok, that last one is a joke - I don't do pull-ups except for my pants! Next update will be on the new elements we are adding to Zoe's Intensive Treatment Program.

Introduction

Welcome to Zoe's blog. We decided to jump on the blogwagon to keep you up to date on Zoelia.Here you'll find pics, updates, thoughts, funny stories and info on her various teams. Stay tuned to find out what's new. For now, you might be amused to know some of her nicknames:

Z Money Budwick (rapper name, abbreviated Z$B)

The Foiler (archvillain name)

Munchkin (we're off to see the wizard)

Smoochie-face (obvious)

Thanks for all your love and support!

Z