Feed Me!!

Alexi's Occupational Therapist has been pretty clear about her not wanting us to be spoon feeding Alexi just yet.  Kids with Down Syndrome tend to have a hard time adjusting to feeding as their oral cavity is a bit smaller and their tongue is not.  This makes the tongue much larger in comparison to the mouth.  We do alot of oral exercises to prepare Alexi for speech and feeding alike and even play with spoon feeding different things from time to time.  But at her 6 month gestational check up, when we told the doctor about this, he very politely suggested (very clearly) that it is time to start!

(old picture as we were so excited feeding we didn't get a picture today)

Alexi had breakfast this morning like she's been doin it for years!  She just sat in her high chair and ate spoonful after spoonful of her oatmeal.  In fact when her serving was done, she threw a "hissy fit" stating (very clearly) that she wants more! 

Well, miss Alexi will have to wait as we don't want to over do anything right away, but sure are excited about feeding!  She was doing all of the oral motor activities that we have been practicing for and it is so awesome to see a full feeding come together so well after all that "training."

We still love and trust our OT and know why she wanted us to wait, as did the doctor.  He acknowledged that what our OT was doing is great, but he felt it's time to get started.  Alexi was super excited and showed us that our patience and practice have paid off.  Even more importantly, it is so much fun watching her try and enjoy new things!  This girl rocks! (very clearly)

(when mom read this she told me she got a cell phone pic from last nights sweet potatoes)

.

Busy Busy Busy

We've been pretty busy here lately and haven't had much time to sit down and type, but Alexi is doin AWESOME!  This weekend has been no exception.  We started it off right by going to Alexi's 6 month gestational check up with the Down Syndrome Clinic.  We got to go to their outpatient north location instead of heading into the city, which was great.  A little farther of a drive but no traffic, yay!  (Dad isn't much of a fan of sitting in traffic.)

Alexi got to see Dr. Vellody for the second time, and is lucky to have that opportunity.  Not only is he a great doctor, but he is a great guy, too.  Dr Vellody's inspiration to become a doctor came from his very own brother, who has Down Syndrome.  So these two had lots of fun hanging out together during the check up.

Alexi also got to meet Sheila for the very first time.  It seems just about everyone in the Down Syndrome community from Pittsburgh knows Sheila.  She is an instrumental person at the clinic who's daughter also has Down Syndrome.  She was a pleasure to meet and Alexi had fun getting all kinds of attention from her!



So what did we find out at the check up?  We found out that Alexi weighs 16 lbs, 9 oz and is over 26 inches "tall!"  With these measurements she has made it onto the non adjusted growth charts!  For those who don't know, there is an adjusted growth chart for children born with Down Syndrome as these kids tend to have a smaller stature.  Adjustments are also made to charts for premature babies.  Alexi has made the typical charts with no adjustments!  She is between the 10th and 25th percentile on weight, height, and head circumference.  This is awesome news as it shows she is growing wonderfully and filling out so well.  Doing so is only going to help her overcome some of the "setbacks" she started off with.

As I'm sure most could have guessed, WE ARE SO PROUD OF OUR LITTLE GIRL!  She never stops teaching and showing us that there are no good "excuses" in life.  When some may have thought that being born 10 weeks premature with Down Syndrome was a weak hand, she plays with the the hand she has been dealt every day of her life, and 'wins.'  Thus, proving that it is a winning hand, as long as it's played right. 









.

Milestones

Milestones milestones milestones!  That's something parents seem to talk about all the time.  So what are they?  Well according to Merriam-Webster's Online Dictionary a milestone is "a significant point in development."

To us milestones aren't anything specific, rather, they are just noteworthy events, the kind of things we think we'll remember and reflect on later.  Well Alexi sure did hit one of those this past weekend, when she met her first friend who also rocks some awesome designer genes!  I'm pretty confident this was the best milestone yet, because we all had a blast!


Alexi not only got to meet Sydney (19 months), who we met through Noahsdad.com, but also got to meet Peyton (almost 3), Tommy (5), Melanie (61 according to Tommy), and Tom.  (Sorry Melanie but I couldn't resist!)  It's pretty obvious that Tom and Melanie share our love for our children and are some pretty awesome people too.  The entire day just reeked of positivity and joy.  

Although I think I spent most of my time playing with Tommy and Peyton, I absolutely love Sydney.  She is so inspiring!  This little girl's coordination and fine motor skills are simply outstanding.  What a good friend for Alexi to have!  Alexi would watch her and you could see Alexi wanted to get up and go, too.

So playing with the Wards was an amazing milestone to us, and Alexi is lucky to have such awesome new friends.   Another great milestone Alexi hit in the past week was drinking through a straw!  It all started with sort of a joke.  Mom was drinking through a straw and Alexi kept reaching for it.  Kerith let her play with it since she has never drank from a straw before, and almost instantly you could see the drink go right up the straw!  Kerith had to quickly take it away, as it was a frozen cappuccino!  Don't worry it barely touched Alexi's mouth, but she sure wanted more!  She must get that from her mother.  We gave Alexi her new juice cup with a straw thing that we got to her begin teaching, and she took right to it.  She now holds it in her hands and drinks her juice when she gets thirsty.

So maybe our opinion of what to consider milestones isn't "typical," but it sure is fun!  We love celebrating and stepping back to appreciate every significant point in our development as a family. 

The 2 Gorillas

So our day was goin awesome...got alot done, came up and fed Alexi a bottle, and went through my friend requests.  Had one from one of my wife's coworkers, thought that was pretty awesome!

Then I saw her most recent post:

Ok, no biggy, people slip all the time.  I mean, this lady probably never even thought of Alexi before she posted.



..Then I saw the Caption:

"Bad word choice, but still funny!"

Now I knew she saw that the word choice was poor, and since she held my beautiful daughter for a long time one day that I took Alexi in to visit mommy at work, I knew she knew Alexi.  I am also aware that she is completely aware of Alexi having Down Syndrome.  So if you know its bad word choice, than you know it is hurtful to someone who has some sort of retardation, like Down Syndrome.

Ok I'll let it go, don't want to stir anything up at my wife's work...

Then I saw the first and only comment on the pic...

"LMAO"

(Laughing My Ass Off, if anyone didn't know that)

The commenter also "shared" the image, they liked it alot!  But it's some girl that we don't know so no harm no fou.....wait....just saw she has another friend in common with me, it's Kerith.  So I ask Kerith who "***** *******" is and she tells me it's a coworker of hers.  Oh boy...

So I ask myself,  "So is this one of those times I say something?  Or one I am supposed to "let it go" so i dont "offend" anyone with a little education?"

I mean it's JUST A WORD right?  Right...just a word...  A word that can hurt someone, and they knew that, it was right in the caption...  But it's just a word.  Don't want to "offend" anyone my wife works with.  Don't want to cause her trouble.  Right?

So a word is just a word...  What if I use my magical photoshop skills to post the same picture, but change the R word to the N word.  What if I post it to this woman's profile?  Would she be upset?  Would her friend?  How could they be if it's "just a word?"



OK, so I know that's not the way to handle it...but what do I do?

I keep defaulting to LET IT GO, but then I look over at my sweet little girl...starring at me as I type this.  With her big beautiful almond shaped eyes.

So I ask myself, how did people get other people to know using the N word is socially unacceptable?  Was it by simply LETTING IT GO?

I am pretty sure that's not the way.  They stood up for the people who it hurt.

If I say nothing at all, how are they supposed to know they did anything hurtful?

I have no clue what to do....



UPDATE: 


I just re-read this post and apologize that it rambles on a bit, it's just how I felt feel.


 I have since decided that there are 2 options (I kinda knew that):

Option A:  Post this blog directly to the image that started it all, so all parties can see what's going on here.

Option B:  Do nothing.  LET IT GO.


My brain is stating the obvious...OPTION B.  Do not cause problems with these adults.  While my heart is saying OPTION A.  Protect your sweet little girl.

So OPTION B protects Kerith and I while OPTION A protects ALEXI.


Thoughts???



ANOTHER UPDATE:


Sorry Kerith, Sorry Kerith's work friends.  I have rationalized that Alexi is the one to protect.  Then when we posted this to our Designer Genes Facebook Page, we were certainly inspired to go with OPTION A by people without children with disabilities as well as those with.

Why would I post this whole thing instead of just asking you to stop?

It's simple, I want you to know what we go through when this word is used incorrectly.  Don't be afraid to use it around us.  We are not offended by it the way people may think.  We hear it and feel like if we don't try to stop it, we are doing nothing to stop it from reaching our daughters ears in a hurtful way as she grows up.

.

Welcome to Holland

So many of you in the Down Syndrome community have probably read this already, but somehow it eluded me until this morning!  I saw these awesome shirts made by Ginny M and liked them right away, but didn't know the significance of Holland.  I asked my wife, Kerith, about them and she was so surprised to hear I have never read this short story.

It's beautiful and well written, and I agree with most of it.  So for those of you who haven't read it here it is:


     "When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”

      “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place.

      It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

- Emily Perl Kingsley 1987

 I love this and appreciate everything she feels, yet I really can't find myself to say "the pain of that experience will never, ever, ever, go away" because, for now, I don't have the pain of wishing I was on any other path.  I am not blind to what lies ahead, and I will feel Alexi's pain when she gets upset, or frustrated, or hurt, but I don't see myself wanting to be on any path but our own.

I am probably in the minority (again) on this one, but when my friends travel somewhere on vacation, I am excited to hear the stories of their trip, but never envious enough to need to go there.  My wife and I love to explore new things, and see new places, so the thought of going where others have traveled is sometimes  less appealing than a new destination.  This doesn't mean we don't appreciate how beautiful the other places are, it just wouldn't bother us at all to go elsewhere.  Even if we had planned one journey, most of the fun we've had in life was "accidental" or "spur-of-the-moment" changes to "plans."  We have always tried to take lots of pictures on our trips and love to share our experiences.  So this metaphor continues, when I think about the fact that we have this blog.

So we really do say to all, "Welcome to Holland!"  Come on over, hang out with us a while, it's a GREAT place to be!  

Another awesome discovery for me this morning is, that GoodJobBuddy.org, was one of the first pages Kerith found about Down Syndrome.  It is also the first place she read "Welcome to Holland."  The great part about that is, Alexi is now a part of their site!  She is in 2 of their header images!!  That is so cool!

So thanks again to Ginny M and thank you goodjobbuddy.org!

.