Why they call him "The Resolution" and other random thoughts...

Travis has earned the nickname "The Resolution" because when faced with a problem, no matter how large or small, mundane or strange, he always manages to resolve it in the most calm and collected way.  For example when the carpenter quoted us a price on a custom baby gate that would have lodged a lump in the throat of Donald Trump, Travis decided that he would build his own baby gate.  The man has never taken a wood shop class in his life!

Incredible! 

And when the source of that atrocious stench that engulfs the garage can no longer be explained by dirty diapers and half eaten grilled chicken sandwiches roasting in the June heat, Travis uncovers the rotting bird carcass that was lodged underneath the engine and promptly fished it out and disposed of it.  The man has never taken an auto mechanics class in his life!

In my defense, I did not hit the bird.  The bird had a death wish.  He clearly had some deep-seated emotional issues stemming from childhood that compelled him to fly up under a car going 65mph on the interstate.  To quote Rain Main, "I am an excellent driver". 

In addition to being known as "The Resolution," Travis is also known as "Crafty Dad" in some circles...the man knows his way around a Hobby Lobby.  More on that to come!

In other news, Aunt Leanne proudly rocked her snazzy new birthday outfit this week.  She looked good and she knew it...

(Please excuse the grainy cell phone photos)

That, my friends, is how you pose for a picture!

Apparently she was showered with so many compliments she decided that the vest and beads would spruce up any old outfit so the next day, she emerged wearing this questionable ensemble...

Oh my, girlfriend!  Unless you were going for the color-blind schoolmarm look, I think you missed the mark.  And what's with the mug shot face?!  I cannot wait until Josie and I go head-to-head on fashion choices.  We're going to need a referee.  I'm sure Mama Hop will relish in every second of it.  Let's hope "The Resolution" will step in to restore peace and aesthetic prosperity.

Speaking of Josie...

My little helper...

My little catfish...

and my little sweetheart is 15 months old today!  How time flies! 

We love you Josie Jo Jo!

Aunt Leanne and the never ending birthday...

Ladies and Gentlemen: I present to you the only person I know whose birthday celebration drags on for WEEKS:

My sister (a.k.a. Aunt Leanne)

We piled in the car and met Mama Hop and Aunt Leanne for a belated birthday lunch today.  We were unable to attend Leanne's actual birthday celebration but Leanne does not mind extending the festivities whatsoever.  We were lucky to have a beautiful day to dine outdoors.  As always, when Aunt Leanne is around, you never know what is going to happen but you can be assured it won't be boring.  Today she sat down at the table and loudly announced "I'm wearing a black bra!"  When no one responded, she elevated her volume even more and said "I'M WEARING A BLACK BRA!"  I quickly feigned an interest in Leanne's undergarments and engaged in conversation about it before her volume increased even more and the whole restaurant heard the announcement.

According to an official statement (text) from my mom, "We had an issue over bra colors and she succumbed to propriety and wanted everyone to know, which almost defeated the purpose :-/"

The thing about Leanne is, the more taboo the topic, and the more it should be kept to oneself, the more Leanne absolutely has to discuss it!  A perfect example is her female cycle which she has been told, repeatedly, should not be discussed with individuals of the male persuasion because it makes them uncomfortable.  And yet somehow poor Travis has been subjected to the following dialogue many, many times:

Leanne: I have something personal I need to tell Elizabeth but I can't tell you because it's woman stuff.

Travis: Well, why are you telling me then?

Leanne: I'm NOT telling you because I'm not supposed to talk about it in front of boys - only girls!

Travis: So why are you talking about it?  You should keep it to yourself. 

Leanne: I'm NOT talking about it.  It's personal!  It's woman stuff.  I'm not telling you because that's inappropriate.

Travis (turning more red and uncomfortable by the second): But you're STILL talking about it, Leanne!  

While I find these exchanges absolutely hilarious, Travis, who grew up without sisters, would certainly prefer to live without the crash course in estrogen related concerns.  Yet, Travis says "We always have to talk about not talking about it!".  Alas, with Josie and another daughter on the way, he better get used to it because the fun is just starting!

Speaking of fun, it was time to open gifts.  No one appreciates a musical birthday card that plays "Celebration" quite like Leanne!

And just in case you're wondering, I totally wrote "Happy 34th Birthday biological Down syndrome adult!"  It didn't faze her - she was too busy dancing. 

For the most part, I think she appreciated her gifts.  Although, I'm not quite sure how to gauge this reaction...

Gee, a plaid skort - just what I've always wanted...

Other highlights of the lunch included when my mom discovered Leanne was eating the shrimp without peeling it...

 Leanne patiently tolerating Josie's new found affinity for hair pulling...

 And the absolute best part of the afternoon: When the waitress brought out a coconut bra and grass skirt in honor of Leanne's birthday, and made her dance.  Now I'm sure the average patron who attends this restaurant on his/her birthday finds this tradition absolutely mortifying but not Leanne.  She proudly strapped on the hula costume and hammed it up for the crowd:

She shook it like a Polaroid picture and even added her signature rear end shimmy at the end!  You go girl!

And as always, Josie basked in the unlimited supply of love and attention that surrounds her whenever these two are around.

I'd like to take this final opportunity to wish Leanne a Happy 34th Birthday (that's it, Leanne - no more!  Birthday is hereby OVER until next year, capisce?!)  For all the Aunt Leanne fans out there, have no fear: she'll be back in a couple of weeks to help Mama Hop babysit Josie while Travis and I attend baptism class.

Prevent Funding Cuts for Individuals with Disabilities - Act Now

While I have no intention of using this blog to spread my own political propaganda, I will use this blog to advocate on behalf of individuals with special needs.  Individuals like my sister and daughter...

Leanne reads to Josie before bed

Some issues aren't right or left; they're not conservative nor liberal; they are simply the right thing to do.  I received the following email from Easter Seals and I'm going to share it and solicit your help because it just takes a minute of your time to reach out to your lawmakers and help make a difference in the lives of people with disabilities:

Dear Elizabeth,

This week, lawmakers are developing proposals that could slash funding for people with disabilities.

We need your help to protect families living with disabilities from these devastating cuts.

Send your letter to Congress by June 24.
"Where will I turn for help?"

This is the agonizing question that families living with disabilities are asking themselves as Congress considers devastating cuts to critical services that provide healthcare, education, housing, transportation and employment.

This week, Vice President Biden and congressional leaders are in closed-door budget talks negotiating the future of millions of Americans. Decisions are being made right now – we can't wait another day to act.

Send a message to your representatives urging them to protect people with disabilities in the ongoing budget debate by this Friday, June 24.

Medicaid and Medicare provide critical – often life-saving – services to millions of Americans living with disabilities. But as I write this, members of Congress are considering budget proposals that would slash funding and restructure these important programs, potentially eliminating the safety net they provide. Other key disability programs are at risk, including those that:

• Support infants with disabilities through therapy and other services;
• Provide job training and employment services for low-income people with disabilities and older adults; and
• Help low-income people with disabilities find housing.

Tough decisions about spending have to be made, but they can't be made at the expense of our children with disabilities, our unemployed adults with disabilities and our seniors. These budget talks are happening now, which means there is no time to wait to tell Congress to protect people with disabilities.

Congress goes on their Independence Day recess starting on Monday, so we have to reach them before then. There's no time to lose to make sure funding for the millions of Americans living with disabilities isn't on the chopping block.

Send your letter to Congress to protect vital services and programs for people with disabilities by this FRIDAY, June 24.

I know we can count on our Easter Seals supporters to speak out on behalf of our most vulnerable families and to oppose cuts to life-saving services and programs for people living with disabilities.

Thank you.

Katy Beh Neas

Easter Seals

Father's Day with YaYa and Papa

YaYa and Papa arrived Thursday to spend a fun-filled weekend with Josie.  YaYa had not seen Josie since the Chili Cook Off in January and she could not get over how much older she looked.  Our little baby is turning into a toddler just in time to welcome the next little baby who will be here before we know it! 

Despite Josie's recent aversion to new faces (even ones she saw just last week), she welcomed her YaYa and Papa without an ounce of hesitation. 

She couldn't wait to do YaYa's signature Pat-a-Cake.  You should see her roll 'em up and throw 'em in the pan!  She's a pro!

And of course she had to offer up some of her famous kisses!  YaYa's flair for fashion and her affinity for shopping for the cutest baby clothes is a big part of the reason Josie remains so stylish and well-dressed and Josie can't thank her enough!

Papa was greeted with an extensive "To Do" list that included hanging the baby gate (more on that later), assembling the new baby furniture, and helping Dad make us a delicious meal with his new meat smoker - a Father's Day gift that will undoubtedly go down as one of the most favorite of all time!  The smoked pork and turkey were phenomenal! 

But Papa really impressed us when he volunteered to babysit Josie on Sunday, after YaYa's flight left, while Travis and I were in Childbirth Class.  He whizzed through "Feeding Tube 101" like a champ and assured us he was ready.  Little did he know that the feeding tube would be the least of his concerns...(more on that later)

We took Daddy and Papa out for Father's Day at Dad's favorite pizza place - the same one we took Papa to when he was here in May.  While Papa looks exhausted from his long day of household chores, Josie was alert and ready to sink her teeth gums into some pizza!

Little Miss was not disappointed.  She clenched her fist around that pizza crust and gnawed on it for 45 minutes until it disappeared.  At the end of the meal, she was literally keeled over in in her highchair in what can only be described as a carb coma. 

On Sunday, YaYa kissed Josie goodbye and left for the airport (I promised I wouldn't post photos of her crying).  Travis and I departed for childbirth class and left Josie in the competent hands of Papa who was staying in town a couple extra nights for business meetings. 

Three and a half hours later, we returned to find Papa looking a little pale and shaken. Apparently when Josie awoke from her nap, Papa was greeted with an unanticipated and rather messy surprise in Josie's diaper. Let's just say that while Papa has many talents, he is not the most experienced diaper changer in the world. Depending upon whose account you believe, this may have been his first diaper change - or at least his first in 30 years...He said if there would have been anyone else around, he wouldn't have done it. He considered sealing it back up and pretending he didn't notice it but he felt bad for Josie. So Papa rose to the occasion and tackled that diaper with a brave face. Of course Josie refused to cooperate and lay still because she's in that 'I'm going to go ahead and kick, flail, and try to roll off the changing table just to add a little extra challenge to your day' phase. God bless Papa. We're pretty sure he'll never volunteer to babysit again.

But then again, you can't stay mad at a face like this. 

Three cheers for Papa and all the other brave, diaper changing Dads out there.  When the going gets tough, they never let us down.  

One of my all time favorite photos...

Don't you just love those photos that truly capture a Kodak moment?  Well, this is one of my favorites because it truly reflects the essence of the family I grew up in.  It was taken a couple of summers ago at a Mexican restaurant.  Us girls thought we'd squeeze in together to pose for a nice family shot.  Well, two of us thought that.  Apparently Leanne had a different kind of pose in mind...

Me, Mama Hop, and Muscle Woman

My mom and I didn't realize that Leanne had sabotaged the photo until we saw it later.  And the reality is that there has never been a more perfect family photo. 

It has been framed on my desk ever since.  I just happened to glance at it tonight, chuckle, and I decided to share it with the blogosphere.  If a picture is worth a thousand words, well, that's my big sister, Folks! 

...just another Kodak Moment brought to you by Aunt Leanne.

Christmas in Therapy World

While most of us celebrate Christmas in December, therapists must celebrate Christmas in June, because last week, they showered Josie with an abundance of gifts! 

Let's start with physical therapy.  Did you know kids with Down syndrome can be super flexible?  Check this out:

Ouch!  Does that make anyone else cringe?!  Well, this excessive hip abduction is an attribute that physical therapists do not want to encourage.  Therefore, Josie's PT brought her a gift that will help: introducing Hip Helpers!  Check out these snazzy electric blue spandex shorts that are sewn together at the crotch:

This calls for a round of applause!

These shorts do not allow Josie's legs to extend at a 90 degree angle from her body as shown in the first photo.  Instead, they promote proper alignment and encourage correct patterns of moment.

Get Lance Armstrong on the phone - she's ready for the Tour de France!

We also spent a great deal of time focused on feeding therapy last week.  Our mission: increase Josie's oral intake to the point where she no longer needs that darn feeding tube!

Josie wore her strawberry outfit to channel good food vibes. 

(Mom wants you to know that Josie never leaves the house without shoes, however, they rarely last throughout the duration of an errand.  Despite Mom's constant reminder of the old "No Shoes, No Shirt, No Service" policy, Josie prefers the au natural look from the ankles down.)

While this particular feeding therapy session did not produce the groundbreaking miracle mom was praying for (yes, I really went in wanting a Pentecostal tent revival type scenario in which we emerged fully healed and free from g tube dependence), we will remain steadfast in our efforts to eliminate Josie's reliance on the feeding tube. 

Josie's Occupational Therapist wants that, too.  That's why she brought us these nifty new feeding therapy devices.  Here is Josie with her brand new Z Vibe:

It's a vibrating pen-like thing that is designed to provide sensory input to increase oral awareness and decrease oral sensitivities.  Josie digs it!

She also brought us this textured "Grabber" that Josie can hold and chew on.  It helps promote tongue and jaw movement and oral exploration. 

Oh how we love receiving gifts around here.  In exchange, Josie's gift to her therapists will undoubtedly be hard work, complete cooperation, and positive outcomes! Right, Josie Jo Jo?  Good deal!

We've turned a corner!

If I were keeping a baby book (this blog essentially IS the baby book), I would write down June 8, 2011 as the official day Josie no longer has to wear her nasal cannula when she sleeps.  We got a call from her pulmonologist this morning.  The results of her 3 day overnight pulse oximeter trend told him that while she still doesn't have healthy oxygen saturations (98-100) during a deep sleep, she keeps her saturations above 90 consistently and he is comfortable letting her ditch the night time oxygen.  Woo hoo!!!! 

Josie will still wear her pulse oximeter which is the probe that is wrapped around her foot (and tangled in her legs) and it will alarm if her oxygen saturation levels dip below 90.  I semi-jokingly said that I will have her wear that until she goes to high school.  It helps ME sleep better!

No worries - her legs and wire are tucked safely into a swaddle wrap overnight so she can't get too tangled!

Of course the big, ugly oxygen tank will remain next to her crib because should she get so much as a stuffy nose, she will need oxygen until she recovers.  Whatever it takes to make our sweet girl breathe easily is fine with us.

No, your eyes aren't playing tricks on you - her crib mattress is on an incline.

For now, we celebrate because we've turned a corner!  Josie's lungs are improving and we are so grateful for that!  You go girl!

Happy Birthday to the Original Downs Diva!

34 years ago today, God sent a special individual into this world to brighten the lives of everyone she touched.  I feel privileged to be her little sister.  Every year on June 4th (and for months leading up to it as she excitedly plans every detail), we celebrate Leanne and the blessing that she has been upon our lives. 

Happy 34th Birthday, Leanne! 

Love,

Elizabeth, Travis, and Josie "Catfish with Ketchup"

Scalp Sunscreen Saga

Well, Folks - summer is here and we've got a blond-haired, blue-eyed, fair-skinned baby who needs to be protected from the sun's harmful rays.  Sunscreen is easy enough but we've got a little dilemma.  You see, while Josie has come a long way in the hair department, she still has a long way to go and we're concerned about her scalp getting fried.  Easy solution: put her in a hat, right?  Yeah, that would be great if she would leave it on longer than 0.3 seconds.  Her occupational therapist tells me hat removal is a milestone and we should be impressed.  Sensational.

Because we waited so long for her to sprout some hair, we take great pride in Josie's hair do's and we'd prefer not to grease up her mane with gobs of sunscreen*.  That's why I was delighted to discover a new product: a special scalp sunscreen spray for babies that boasts a non-greasy formula.  The perfect solution, right?!

WRONG! 

So until the I-stuck-my-finger-in-the-light-socket-and-then-added-Crisco look comes in style, it's back to the drawing board for us.  Suggestions welcome!

* Don't you just love how I say "we" as though Travis is sitting around agonizing over how to protect Josie's scalp from the sun while not jeopardizing her meticulously styled tresses?  I'm telling you folks, he's losing sleep - lots of sleep!