And now, the photo we've all been waiting for...

Without further ado...

And no, I didn't make her eat it in the bathtub!

(that's supposed to be a catfish)

Happy 1st Birthday Josie!

While it may not seem like the most sentimental song, it is very sentimental to us.  It came on the radio while we were driving to an adoption meeting, brainstorming names.  We both stopped, looked at each other, and said "Josie!" at the same time. 

Not only that, but this song for which my first baby is named was also the first concert my parents ever took me to.  I was 5 years old at the Illinois State Fair.  The Outfield opened for Jefferson Starship.  To this day it remains the best one hit wonder of the 80's and my all time favorite song! 

Happy 1st Birthday, Josie!  In one short year, you've turned our world upside down and filled our lives with a love beyond measure!

Make an on-line slide show at www.OneTrueMedia.com

Mini Me

My friend, Lauren, got Josie a birthday gift that tickled us so much we had to share - a baby doll that looks just like Josie!

When they start making dolls that look like you, you know your cuteness quotient is off the charts! 

 If imitation is the sincerest form of flattery, then we are beside ourselves.  Thanks Lauren!

Feeding Therapy

Josie hasn't done well with her eating during the last couple of days.  I immediately thought she was regressing and I went into a full blown panic.  In my world, a lack of enthusiasm for eating for a couple of days equates to "Oh my heavens - this child is going to be on the feeding tube until she goes to high school!!!"  Ask Travis - going to extremes is my forte. 

I was desperate.  So desperate, that I called to mind some advice her feeding therapist had given me; advice that I'd conveniently ignored until now.  She said to let Josie "play" in her food so that she has a fun and positive association with the food.  Sounds like a great idea, right?  The only caveat being that I am extremely mess averse.  I truly had to weigh the benefit of Josie's oral motor experience against the sheer anxiety the notion of letting Josie cake herself (and my kitchen) in food would bring to me in my already fragile/hormonal/pregnant state. 

But I started to imagine Grammie Deb sewing a mic-key button patch on Josie's prom dress and I caved.  I stripped that baby down, set her in the bathtub, took a deep breath, and let her go to town...

Josie had a ball with this little exercise but she didn't eat very much...Oh well - it was worth a shot.

Fast forward a few hours later when Josie's Daddy sits down to feed her dinner.  "Don't expect much" I warned him. 

Well I'll be darned if that little stinker didn't scarf down a whole container of baby food faster than you can say "Forget you, Mom!  Dad is my favorite!" 

Ironically, she happened to be wearing this shirt today

(Target didn't have an "I love my Mommy" shirt)

Go figure!

Happy Belated World Down Syndrome Day 3-21-11

March 21st is World Down Syndrome Day.  It's a day for creating awareness about Down syndrome, for celebrating individuals with Down syndrome, and for advocating on behalf of the people in our lives and in our communities with Down syndrome.

My only sister has Down syndrome and therefore, people with Down syndrome have always held a special place in my heart.  When I went off to college, I began volunteering at a developmental center for children with special needs because I missed my sister and longed for that connection to the special needs community.  In every city I've moved to, I've sought out volunteer opportunities so I could spend time around people with special needs.  These interactions broadened my horizons and affirmed the things in this world that are genuine and truly worthwhile.

The culmination of these experiences led my wonderful husband and I to start our family by adopting a baby with Down syndrome.  Now, I have been re-introduced to the special needs community from a whole new perspective and it's exciting, overwhelming, frustrating, inspiring, fulfilling, rewarding, and so important.   

It's important that society recognizes that individuals with Down syndrome can lead abundant, meaningful lives and are fully deserving of inclusion and rights.  I want my daughter to grow up with every opportunity to maximize her potential and achieve her dreams.  If we can teach the world to value her contribution to society, her life will be enriched as will the lives of everyone she comes into contact with. 

Guess who taught me that: my big sister!

The most important lessons in my life and the values that I hold with the strongest conviction, came from growing up with a sister with Down syndrome.  So please join me in celebrating World Down Syndrome Day and let's spread the message so the rest of the world can become enlightened to the vital role individuals with Down syndrome play in our lives and in our communities. 

Wrapping up the week

It's always a good week when Mama Hop and Aunt Leanne are in town.  We very much enjoyed their company.

Josie's shirt says it all

Leanne and I took advantage of Mama Hop's babysitting services to enjoy some sisterly bonding over shopping - mainly for Mama Hop's upcoming birthday.  You see, Leanne starts obsessing over the next person's birthday as soon as the last person's birthday is over.  For awhile now, she's been planning my mom's birthday and has been telling us that she's going to get her a "black Mercedes convertible" this year.  Well, when she asked me to take her out shopping to buy mom "a shirt and pants," I inquired about the status of the Mercedes and she looked me straight in the eye and very seriously said "I'm still working on it - saving my paychecks."  Fair enough! 

Leanne loves to help with the grocery shopping.  I'm sure her eagerness to help has nothing to do with the fact that our grocery store has a Starbucks in it.

So we were off to buy my mom a nice outfit.  My mom specifically requested a sundress that she could wear this summer but Leanne was insistent on buying her "a shirt and pants".  When I wandered into the dress section and Leanne adamantly refused to thumb through the racks with me, I dialed my mom and put Leanne on the phone.  I only heard Leanne's side of the conversation which went like this "No, you're not getting a dress.  That's tacky!  I will buy you a shirt and pants.  I have a plan!" 

I tried to explain to my sister that a gift should be about what the recipient wants; not what the giver wants the recipient to have but Leanne wasn't buying it.  I even said "Leanne, your birthday is next.  What if I want to buy you a bunch of pantyhose for your birthday present?"  Leanne immediately crinkled up her nose and looked at me in horror as though I had threatened to lace her birthday cake with arsenic; then she realized where we were going with this, resumed a pleasant face, and said "That's ok.  You can buy me pantyhose if you want to.  It's whatever YOU want!" 

Oh Leanne! 

So I don't think it will come as a shock to my mom that in this box is...

...a shirt and pants!

 The rest of the visit was lovely and entertaining as it always is when Mama Hop and Aunt Leanne are here.

Oh how I love this photo!

When it was time to leave, Leanne stalled as usual, telling my mom that she needed more time with Catfish with Ketchup.  Finally, she said her goodbyes, grabbed her Starbucks, and they hit the road.

But that wasn't the end of our exciting week of visitors.  Look who just happened to breeze into town on business - Papa!  Yes, Travis' Dad had some time before his meeting so he came by and had lunch with us.  Naturally, I put him to work feeding this little munchkin...

Josie was absolutely delighted to see her Papa.  She ate well, then showed off her dance moves, flaunted her standing skills, and delayed her nap time as long as possible so she could spend time with him.  Before he left, she demonstrated one of her latest and greatest tricks: she gave him a big, wet smooch on his cheek to thank him for visiting!

And just when it seemed like our week had gone off without a hitch, I received the following email from Leanne:

dear sister eliazabeth fry rice

nickname

i

lost

my shampoo

for

hair

left

basement

bathroom

down s

saitesairs

sub

sandwich

ham

cheses

banna

perr

peppers

tomatoes

oinions

green peeppers

wheat bread

juice apple kiwil

cranberry

shopping

helen birthday

to tromorrow

bowing alley

tromrrow

leanne me

cheesebuger

head

 
Oh dear!  My mom tells me Leanne obsessed over forgetting her shampoo at our house for hours!  Poor Leanne.  Whatever will she do?  I guess when we see her next, she'll just have really dirty hair.  Oooh!  I feel an annoying little sister perfect teasing opportunity coming on here!  "Hey Leanne!  Why does your hair look so dirty?  I guess you haven't washed it since you were here last because you forgot your shampoo in the bathroom downstairs!  Yuck!  And I guess you'll never be able to wash it again because I used it all up!  Doesn't my hair look nice and clean?!" 
 
LOL!  I know, I know - I'm mean!  I've got nothing but love for you, Leanne!  

Happy St. Patrick's Day from Josie

Special Thanks to Grandpa Hop for making sure Josie had festive attire for her first St. Patrick's Day! 

Josie's Dance Club

Josie has recently developed an affinity for dancing and based on my lifetime of experience with chromosomally enhanced individuals, we're just seeing the tip of the iceberg!  At first, she was shy about it and she'd stop if she noticed us watching her but she quickly got over that.   Now, as soon as we put music on, she starts grooving.  Mama Hop insisted I post this to the blog so this one's for you, Mom!



I think we better brace our neighbors for karaoke on the porch.  When Leanne was younger, she'd drag her karaoke machine out on the front porch, plug it in, and proudly serenade the neighborhood at the top of her lungs.  It got to be such a passionate hobby that my parents had to impose curfew restrictions so she didn't start too early and wake people up! 

Resolution and Gratitude

dear brother tavis

thanks

for fix my tv

commmercials

you

favoerite brother

remtote

control

works

now

am

happy now

wached disney

come back soon

to

routain

gone

back and

frorth

going

stop

now

am sorry

broke tv

love leanne

cheses buger

head


I bet that during church this morning, Leanne prayed that her TV would get fixed because by the time she got back, it was working :-)  Before she left, we had this exchange:

Leanne: I'm going to pray for Catfish with Ketchup at church
Me:  I know.  You always pray for Josie.  That's great!
Leanne:  I'm going to pray for your stomach, too!
Me: Oh thank you.  Come August, my stomach is going to need prayers.  Please pray for my hips, thighs, and rear end, too!
Leanne: I mean Banana Split - I will pray for the baby in your stomach.
Me: Oh...Ok, thanks.  Please pray for my stomach, too.  I need all the help I can get!

Josie and I stayed home from church because of her quarantine but as always, we appreciate the prayers from the ever devout, Aunt Leanne. 

Emergency at Technology Central - Please Help - Make it Fast!

I think I've explained before how I'm married to Mr. Technology and we live at Technology Central.  It has its benefits but I have to admit, everything is so darn complicated!  I've learned how to work the TV, stereo, and computer, but if something goes awry, I haven't the slightest clue how to resolve the issue.  Usually, I just have to go without that technical luxury until Travis can fix it. 

Leanne, however, is not very patient or understanding when something comes between her and The Wizards of Waverly Place!  Today the TV in the guest bedroom froze on the Hallmark Channel and Leanne was not in the mood to watch "I Love Lucy".  And of course this happens when Travis isn't around! She demanded I fix it but I knew that my troubleshooting efforts would be hopeless. 

 

Devastating

Where do you even begin?!

Leanne even tried chastising this box



So Leanne decided to send Mr. Technology an email appealing for urgent help...

brother travis

nickname stirfy

head

broke the tv

commercials

remotton roll not

not work

not happy

consequnces

no show on

tv

i board

nothing

to do

pleaes help make it

ffast

 

Travis will undoubtedly understand every word of this email but I'll go ahead and translate for everyone else:
Brother ["in law" (we need to work on this - I just assume NOT be married to my brother but I digress...)] Travis,
Nickname Stir Fry Head.  Broke the tv.  Commercials.  Remote control not work[ing].  [I'm] not happy.  [The] consequence [for breaking the remote] is no shows on [the] tv.  I['m] bored.  [There's] nothing to do.  Please help - make it fast!

Gee...no "Love, Leanne" or anything!  Let's hope our personal help desk gets this issue resolved ASAP!  On the bright side, the Aunt Leanne antics are bound to increase tenfold without the diversion of the television. 

Leanne Blogs

Aunt Leanne is back!  By popular demand, she's writing a blog post and revealing the food nickname for the new baby...

leanne
cheeaebuger head
nickame
new baby
bannas spilt
that it
surup  butterscopesach
done
joise catfish ketchup
dance clulb
teachbaby to dance
go to with sisterto
buy shopping
mom birthday
starbucks good
behive

Introducing Banana Split!

Leanne gave a food nickname to the new baby within seconds of finding out I was pregnant.  Banana Split!  Apparently a banana split would need some butterscotch syrup...In other news, Leanne wants you to know that we had a dance party this morning.  We plan to go shopping for my mom's birthday gift this afternoon and if Leanne is on good behavior, we may even get a Starbucks!  Stay tuned - it's 24/7 entertainment when Aunt Leanne's in the house!

A Little Announcement...

Ok, it's kind of a BIG announcement for us.  Drum roll please...Josie is going to be a big sister! 

And I know she's going to be just as wonderful of a big sister to this baby as Leanne was to me.  This little bundle of joy doesn't know how lucky he/she is!  Come August, our little family is going to have a new member and we feel so incredibly blessed and thankful.

Here's our first picture of the new addition:

Cute, huh? 

Anyone want to take a guess at gender?  I'll give you two hints (and warn you that even the ultrasound tech couldn't be 100% certain).  Here goes...

Hint #1

Hint #2

Alright.  That's enough excitement for one day.  Goodnight!

Mic-Key Button 101

Yesterday, I faced one of my biggest medical fears since having my wisdom teeth removed (and this time I had to do it sober): I learned to change Josie's Mic-Key button.  You see, I'm no medical professional nor did I ever aspire to be one.  And the notion of facing that gaping hole in her abdomen sends me running for the nearest commode!  I had to leave the room when Josie got her first Mic-Key button.  Lucky for Josie, her Daddy is a bit braver than I am.  However, the Mic-Key button is a fact of life around here for the time being, and if it were to ever come out accidentally while I was alone with her, I would need to know how to put it back in. 

Yesterday morning, during mirror time, Josie gave me a little pep talk...

Oh come on Mom!  Be brave!  You can do it! 

See?  You just lift my shirt up like this, deflate the old one, pull it out, pop the new one in the hole, and inflate it.  Simple! 

Seriously, Mom.  Calm down.  If Dad can do it, you can do it!

I don't know what she's so nervous about.  It's just a little plastic button in my belly.  For Pete's sake! 

So, with Grammie Deb by my side for moral support (bless her heart), we headed off to Josie's appointment.  I resisted the feelings of queasy lightheadedness that threatened to consume me and derail the process and I followed the nurse practitioner's patient guidance.  Mic-Key Button 101 actually wasn't that bad!  Granted, the recollection of the hole in her abdomen still makes my stomach churn, but I prefer not to think about that.  Instead I am proud that Josie is the owner of a shiny new Mic-Key button.  And I can happily add "Mic-Key Button Installation Engineer" to my resume. 

At the end of our appointment, the nurse practitioner said "So now that you have learned how to change it, do you even need a follow up appointment for me to change it in 3 months?" and before he could finish his thought I said "YES I do!  Just because I know how to change it doesn't mean I want to change it!"  The past 11 months with Josie has made me feel like an honorary medical professional but that doesn't mean I'll be going back to school to earn my nursing license anytime soon.  No sirree! 

Speaking of Mic-Key buttons, I'm aggressively working to eliminate the need for that stupid button.  Teaching Josie to eat orally has been a lesson in patience.  She has made great progress but she's nowhere near where she needs to be to sustain herself without the feeding tube. 

Upon learning that children with Down Syndrome benefit greatly from learning to use a straw, I purchased this nifty therapy cup called a Cip-Kup.  The Cip-Kup makes straw drinking easier because it has a lip block to prevent tongue thrust and it has a valve at the bottom that allows the fluid to remain in the straw once suction is released so it requires less effort than a traditional straw.  Like most of our great ideas, this was a recommendation from our favorite feeding tube graduate/oral feed mentor, Pudge!

Josie is also working on chowing down on baby food.  She loves the vegetable risotto with cheese (thanks Mama Hop)!  She's not so crazy about the fruits but there's nothing wrong with being a vegetable fan, is there Travis?!  Ha! 

We're always receptive to ideas that can help facilitate the transition from being a g tube eater to an oral eater.  If anyone has a success story or would like to share a helpful tip, PLEASE email me or leave a comment!  

Leanne's Guide to Weight Loss

Those jeans are looking pretty baggy, Girlfriend!

Leanne loves to talk about food.  To call it an obsession is an understatement.  However, she tries to be health conscious and she loves to tell us that she's "getting skinny"!  She recently sent an email update on her progress.  It's part bragging; part appealing for a new wardrobe:

dear eliaeabeth nickname freid rice

lost weight 10 pounds


keep out stuff habits hibits


watch cholesterl


no fat


i excises


i take walk


times


6 days


i


need


clothes


leanne


chesesbuger head nickname

Leanne walks daily - either around the cul-de-sac or back and forth in the basement (it's rather funny to watch but the girl's committed!).  She's also a huge fan of Richard Simmons (who isn't?!).  A couple of years ago, my mom plotted and schemed and ended up getting Leanne a  once in a lifetime opportunity to meet her fitness idol!  Sorry about the grainy cell phone photos:

Enamored

Leanne, I'm sure if he could see you now, Richard would be so proud of your weight loss.  Congratulations!  I'll be on the lookout for some cute new duds for your skinny self! 

Spread the Word to End the Word 3-2-11

One year ago, in response to President Obama’s chief of staff Rahm Emanuel’s use of the word “retarded,” the Illinois Special Olympics released the following statement to the media:

Special Olympics Calls on Schools, Organizations and Communities to



Spread the Word to End the Word and Help Stop Use of the Word “Retard”


NORMAL, Ill. – When you ask Special Olympics athletes about the R-Word, they will tell you about the hurt they have endured over the years being called “retard” or “retarded.” A movement began more than a year ago by Special Olympics International, led by youth leaders, to raise society’s awareness about the harmful effects of using the R-Word. A website was created so people of all ages can take a pledge not to use the R-Word at


www.r-word.org. The second annual day of awareness to Spread the Word to End the Word is March 3, 2010.


Schools, organizations and communities are encouraged to plan events for March 3 or anytime during the year to Spread the Word to End the Word with a commitment to creating an atmosphere of respect and inclusion for people with disabilities. Visit the Special Olympics Illinois website at www.soill.org for ideas and links to resources to Spread the Word. As Special Olympics athlete and Global Messenger Lauren Miller of Evanston says, “Let’s change the R-Word to Respect.”
Special Olympics Illinois is making Spread the Word public service announcements available to television stations, recorded by Special Olympics College coordinator Soeren Palumbo of Palatine and by Rob Johnson of CBS2 Chicago. Each has a family member with an intellectual disability.
Special Olympics Illinois is working with three schools in Illinois on specific Spread the Word projects and events as part of a Special Olympics Project Unify grant and include the following:


- Schaumburg High School’s three leadership classes will each create a marketing campaign to Spread the Word at their school – the winning idea will be implemented the week leading up to March 3.


- Mt. Greenwood School in Chicago ’s campaign led by the seventh-grade students will educate and rally support at two school assemblies where they will present a skit and solicit R-Word pledges on Feb. 26.


- Unit 5/Parkside Elementary School in Normal ’s fifth-grade class will present daily creative P.A. announcements (2/16-3/18) about the R-Word, solicit pledges, make posters, etc. The effort concludes with a one-hour school assembly on March 19 where students explain the effect of the project on them.


These schools will also have their students involved in the Special Olympics Young Athletes Program for children ages 2-7, helping with training and the Young Athletes culminating events in their areas this spring.
Spread the Word Resources are available from Special Olympics – go to www.soill.org for these links and information:


• Take the pledge to not use the R-Word
• Download the Spread the Word Toolkit
• Watch the “One” music video on YouTube created at last year’s Youth Leadership Forum at Hersey High School in Arlington Heights . A DVD is available to schools and groups from the Special Olympics Illinois’ communications department.
• College students who want to make a difference can register for SO College through the Special Olympics website.
• Bring a group to volunteer for a Special Olympics Illinois event or support fundraisers like the Polar Plunge to benefit Special Olympics Illinois.

Barbara DiGuido, Director of Communications and Media Relations, received the following response from journalist Stan Zegal, Publisher of the Winfield Register and the Warrenville Sentinal: 
Oh grow up!

DiGuido replied:

Mr. Zegel:

I think you might feel differently if you had a child with Down syndrome or another intellectual disability,
Barbara

Which prompted Stan Zegel to issue this response:

Only if I was in denial and believed that magic words could reverse the condition. Otherwise the knowledge that another person is retarded alerts one to make allowances for unconventional behavior or substandard attainment. Some folks are not as smart as others or act in weird ways. It is quickly excused by others when the subject is known to be mentally retarded


Euphemisms just try to pretend that things are different from reality, and satisfy the weird beliefs of the Politically Correct Language crowd that everyone is entitled to go through life without having their feelings hurt, even by being exposed to truthful observations.

A person who cannot see is blind. There is nothing wrong with that, and there is no insinuation of blame to them if their condition is described as what it is. Blind. "Visually impaired" is PC but avoids the issue.
A person who cannot hear is deaf.
A person who cannot speak is dumb.
A fat person is fat. Saying that I am "barometrically challenged" won't make me thin.
A mentally retarded person is retarded. His mental development has been retarded by some condition. There is no blame implied, but it is a general description of the end result, which may arise from any of several causes.
A crippled person is crippled. No blame, just fact.

And ;yes, some people with certain behaviors are crazy. There are congenital or other medical abnormalities that may cause that antisocial behavior, but the result is still crazy behavior. Mothers who kill their children, terrorists, etc. come to mind.

Stan Zegel
Publisher
The Winfield Register
The Warrenville Sentinel

This exchange circulated throughout the Special Olympics community and was met with outrage and disgust.  When it found it's way to my inbox, my blood was boiling but instead of replying out of blinding fury, I challenged myself to contact Mr. Zegel and explain this to him in a calm, dignified manner with the hopes that something I said may actually get through to him and allow him to realize just how misguided his remarks were.  Here is my email to Mr. Zegel:

Mr. Zegel,

Upon reading your essay on the word "retarded," I challenged myself not to react in anger but rather, to explain this to you in a way that may make sense and clarify the issue. My older sister has Down Syndrome but I don't consider her "retarded". You see, retarded is an all encompassing word that does not allow for exceptions. An individual who is simply "retarded" would be limited - period. And while I would agree that Leanne has her limitations, she is not entirely limited. There are many areas in which she excels. For example, Leanne is more friendly and charismatic than most people I know - she can make conversation with anyone. So her social quotient is not "retarded". Likewise, when you are upset or feeling down, she is the first person to pick up on that and try to comfort you. Her sense of empathy is not "retarded". Leanne says and does hilarious things all the time - her sense of humor is not "retarded". Leanne's bedroom is always immaculate - she has a place for every possession and a strong focus on maintaining order - her organizational skills are not "retarded"...

As you can see, I can go on and on about areas in which Leanne is not limited. Now, I admit, she needs some help in other areas. She has difficulty counting currency and sometimes she needs help understanding the concept of time. This is why we prefer to refer to her intellectual condition as having "Special Needs". There are certain tasks that require Leanne to take a little extra time and enlist in a little extra help. But trust me - Leanne gets through the majority of her day without any extra help. She is not "retarded".

I hope this sheds some light on the issue and allows you to understand why yes, a blind person may be blind without exception. They will never experience a moment of sight. But Leanne, completes many daily functions without an inkling of retardation. I hope in the future, you'll think twice before categorizing someone as wholly retarded and rather, stop to realize that this person has many abilities and a few "special needs."

Thank you,
Elizabeth

Please join me today as I Spread the Word to End the Word

My big sister & I at my wedding

(she called herself my "Best Woman" instead of "Maid of Honor")

August 2002