Skills and Abilities Clearing House

Now that Josie's mastered head control, we're moving on to trunk control and learning to sit up.  As the constantly caffeinated, Type A, sometimes bossy (thanks Leanne) person that I am, I like to maintain a fast pace and to set the bar high.  Moreover, my sister has taught me to never underestimate the "skills and abilities" of an individual just because he or she has Down Syndrome.  That being said, this kid oozes potential and I'm not exactly apathetic so between the two of us, we're committed to the ongoing development of her repertoire of "skills and abilities".  But even I was surprised when I witnessed today's progress...

The shriek that erupted from my lungs caused Travis to come running!*

 

*Anyone who knows my husband understands that I've employed hyperbole as a fundamental literary device to help add impact to the story.  The reality is that he likely walked at a sensible and moderate pace, all the while wondering what could be so important that I would interrupt him from the ever pressing installation of a new CPU cooler into his computer. 

Check it out!

Here I go...

Almost there!

How's that?  Not bad for my first try, right? 

She's looking off to her left wondering if Ed McMahon had just walked into the bedroom or if my superfluous frenzy could actually be attributed to her impromptu baby yoga pose. 

Oh the thrills of parenthood!

Go Shawty, it's your birfday...

Let me start by saying that Mama Hop made a BIG deal out of birthdays when I was growing up so I'm a bit of a birthday fanatic.  That's why when I found out that Travis' dad was coming to town on business yesterday, which just so happened to be his birthday, I took advantage of the opportunity to do it up right! 

I decorated and bought cake and ice cream.  When he arrived, I went on and on about how he shares his birthday - September 28th - with Josie's half birthday.  I made him pose for pictures and blow out candles...Later that night, after Papa had left for his business dinner, Travis said "Elizabeth, I don't think today is my Dad's birthday."  And I said "Huh?  Of course it is."  Then he went to check his calendar and he said "No, today's not his birthday.  It's actually tomorrow.  He was just being polite and playing along since you made such a big deal about him and Josie having this special connection because they were both born on the 28th!"   

All of the sudden the mortification set in...

I guess that kind of explains the odd conversation Papa and I had as he was walking out...

Elizabeth: 56?

Papa: Huh?

Elizabeth: 56!  You're 56 today, right?  Geez - it's your birthday - what did you think I was referring to?

Papa: Oh, yeah.  I thought you said 50 Cent - like the rapper.

Elizabeth: (sarcastically) Yeah, that makes sense because I frequently reference 50 Cent!  He is my hero, after all! 

Sheer MOR-TI-FI-CA-TION, I tell you!  Papa, this one's for you:

http://www.careerbuilder.com/monk-e-mail/?mId=37094742.2

(By the way, that's a 50 Cent song in case you were wondering...)

Happy Birthday, Papa!  September 29th!

Josie is 6 months old today!

Photo and video editing at www.OneTrueMedia.com

Home Sweet Home - take two

Deja Vu

A little encouragement from Aunt Leanne

josie catfish ketchup nckname


so better payer for you

glad came for home

breakfast yougart

banna cream lime pie

favorite

and coffee sugar

and cream coffee

favortie

for lunch

chicken club

i miss you

love aunt leanne

chesebugerhead

The Daddy Effect

The day got off on the right foot when Josie was greeted by her dad!  Call it coincidence but Josie showed encouraging improvement throughout the afternoon. 

Hey Dad - I missed you!

She was very cooperative during her breathing treatments and even decided to help the respiratory therapist. 

Here, let me give you a hand with that.

Ok, I got it from here.  Why don't you go ahead and take the rest of the day off...

As usual, Josie isn't hurting for attention.  We returned from lunch to find her being cuddled by Katie, the nursing student.  Apparently baby spoiling is an important part of the nursing school curriculum and it requires many hours of practice.  Katie just couldn't resist this bundle of cuteness!

No pictures, please!

Josie's breathing is a lot less labored and the stridor sound has reduced significantly.  As I type this, her Daddy is holding her and her oxygen saturation is 100 (A+ girlfriend)!  I'm sure the saturation perfection is aided by the fact that he's singing "Josie's milkshake brings all the babies to the yard..."

The medical staff is slowly attempting to wean her off the cannula.  We were told that she could return home when her breathing returns to "baseline" (ie no oxygen, no stridor sounds, no retractions).  Her diagnosis is an undisclosed respiratory virus (the physician did not want to commit to "croup") and it appears to be passing.

Josie would like to personally thank all of our Confessions of the Chromosomally Enhanced friends for their support, encouragement and prayers. 

Thanks everybody!  You are the best!

Hanging in there

The Good News: They removed her high-flow nasal cannula this morning and Josie maintained her saturations in the 90's all day.

The Bad News: Even though her saturations were good, her retractions and strider are worse without the cannula and she required more frequent breathing treatments so the cannula is back.  That's okay - cannulas are the hottest trend this fall and she looks darn cute in it. 

Cannula-free smiles

The Good News: A couple of residents told me because she responds favorably to the nebulized epinephrine, they think it's croup.  Croup is a virus and generally passes within a week or so.

The Bad News: Josie's airways are smaller than average so any inflammation or swelling has a more serious impact on her. 

Lounging in the swing

The Good News: Josie had an echocardiogram today to rule out any heart problems.

The Bad News: I still don't have the results even though I've had the doctor paged...twice...I'm going to assume that if the results indicated heart problems, the cardiology service would have come by to see her by now.  No news is good news.

Snoozing through the echo

More Good News...

She looks good, right?

She's happy

Nurse Coleen scored me lots of syringes to take home (hey - it's the little things in life)

Nurse Katie is working tomorrow

Daddy is coming tomorrow!

Sweet Dreams Josie Jo Jo

Prayers Needed

It is with a heavy heart that I communicate that Josie was admitted to the hospital today due to breathing difficulty.  She developed a deep retraction in the center of her chest, compounded by a terrible sound called a "stridor" and falling oxygen saturation levels. 

She is receiving breathing treatments and is now on a high-flow nasal cannula while the pulmonologists collaborate with the cardiologists to try and figure this out. 

This poor kid has gone through the buffet line of health problems and has taken a heaping helping of way too many.  To make it even more gut-wrenching is the fact that she confronts these obstacles with a smile on her face.  Check it out - showing off her "skills and abilities" in her hospital bed:

Head Control, Baby!!! 

We've been through hell with this little lovebug and maybe it makes you stronger but mostly it makes you not want to go back to that dark and discouraging place.  Please join me in praying that this is a minor problem with a quick and easy solution and that Josie moves forward in good health.  The prayers got us through the adoption process, and through the open heart surgery, and though the most recent hospitalization and I know they can get us through this. 

Dance Marathon

Look who's back!  Leanne and Mama Hop rolled into town to keep Josie and I company while Travis was on a business trip to Europe. 

Mama Hop threw herself into Feeding Tube 101 like a champion.  Although this was not her first experience with a feeding tube - Leanne had one circa 1977 - the technology has changed a bit since then.  My super savvy mom was undeterred by the electronic pump and all of it's beeping and she became an expert in no time.   

Aunt Leanne took great pride in "paci duty" in which she would promptly return the pacifier to Josie's mouth each and every time she spit it out.  Let me tell you, folks, you'd be hard pressed to find anyone else with such a talent (and patience) for "paci duty"! 

Our guests also helped us with various other household duties including baby bathing and grocery shopping...

Leanne took great pride in pushing the cart with Josie in it.  She would inform every passer by that "That's my sister.  This is her baby, 'Catfish with Ketchup.'  This is my favorite baby.  I pray for this baby every night!"  Now everyone at my neighborhood grocery store thinks I named my baby "Catfish with Ketchup."

The highlight of the visit was Friday night.  It started out calmly enough; we invited our good friends, Curt and Abbey over for pizza.  Abbey held Josie while Leanne read aloud and demonstrated sign language.

My mom and Leanne had recently attended a rock ballet and Leanne decided to demonstrate some of the ballet moves for our guests.

Somehow this evolved into a Michael Jackson themed dance marathon...

While Abbey, my mom, and myself attempted to keep up, Curt was the only one who could truly match Leanne's energy and enthusiasm.

Leanne - Friday,11:30pm

Leanne - Saturday, 9:00am

Looks like someone had a bit too much Propofol. 

(I'm sorry - bad Michael Jackson joke.  I love you, Michael.  RIP!)  Luckily, this sleepy state quickly disappeared with the mention of a Starbucks Frappucino. 

Overall, we had a great time together! 

And Josie can't wait for another memorable visit from her lively Aunt Leanne.

  Bring on the dance lessons!

Tumble Form

Today Josie's therapists came bearing gifts; a couple of new adaptive seats including this snazzy, electric blue Tumble Form.  The Tumble Form is designed to promote proper posture and provide positioning support during daily activities. 

Well, how do I look?

The Tumble Form is particularly advantageous to have during meal time. 

Although, I'm not sure Josie is truly maximizing the ergonomic benefits of the device when she insists on sitting in it like this...

We'll have to work on that. 

On another note, be sure to tune in later this week.  Aunt Leanne will be rolling into town on Wednesday and it's a pretty safe bet that she'll do something blog worthy (and that's putting it mildly).

Until next time, folks!  And Travis, Te iubesc.

Reunited and it feels so good

They picked up right where they left off...

Unanticipated side effect of motherhood: insane jealousy towards the ceiling fan. 

Pathetic, I know. 

Home Sweet Home

The day we've been waiting for finally arrived!  Today was the hard-earned discharge day for Josephine Leanne.  After completing Feeding Tube 101, we were ready to head home. 

Did someone say I get to go home?

Awesome!

Josie completed one last physical therapy session where she demonstrated her remarkable neck strength by holding her wobbly little head up for several seconds.  She sure didn't use that 3 1/2 week hospital stay as an excuse to slack off in the PT department.  Aunt Leanne would call that an impressive display of "Skills and Abilities". 

Alright - I did it.  Now can I go home?

The one benefit of the extensive amount of time Josie has spent in hospitals is that it has truly allowed Travis the opportunity to hone his hospital room ransacking skills.  He likes to point out that we paid dearly for every item in that room and he's not about to let a $40 tube of diaper rash cream get tossed.  While Travis packed up everything that wasn't nailed down, I utilized my former fundraising skills to appeal to Nurse Rhonda to donate some extra Toot Sweet and syringes to Josie's cause.  What can I say?  We make a good team! 

The rest of my evening was spent holding that sweet baby and choking back tears of gratitude.  This experience has been an agonizing, miraculous, heart-breaking, life-changing, confounding, empowering, roller coaster.  The emotions are raw, the blessings are abundant, and the thankfulness is eternal;

She's vibrant

She's healthy

She's home

Photo Update

Well, it's official; Josie is the proud new owner of her very own G tube.  The surgery went well and the recovery has been quite smooth.  Yesterday, Josie even got to leave the PICU (hopefully the PICU staff made it abundantly clear that she is NOT welcome back).  Here are some photos taken over the last few days...

Last photo taken without a G Tube

Toga! Toga!

(The surgery kept getting delayed so we had to do something to entertain ourselves while we waited.  Corey, this one's for you!)

Showing off the G Tube

Smiling at Ya Ya

Demonstrating some cool hand tricks for Pa Pa

Baby Aerobics - leg lifts!

Now touch your toes! 

(Super fun socks courtesy of Jonnikka.  Thanks Jonnikka!)

If all goes well, we should be heading home later this week.  We can't wait!