How lucky am I

I woke up to plow some snow just before 2:00 this morning.  Plowed hard and fast to try and get done so I could spend some time playin with Alexi today.  I plowed 10 parking lots in 5 hours, for those who don't know snow removal, that's pretty darn good if I do say so myself!  Then the wheels fell off my truck.

You read that right, the 2 dually wheels (rear wheels) on the driver's side, just plain fell off the truck in a parking lot right as I finished plowing and salting it.  Sheared the wheel studs clean off.  Took it "with a grain of salt" or with 2 tons of rock salt I still had loaded in my bed, and thought well my day sure wont get any worse, time to get it fixed.

I called my lovely wife and had her come to rescue me.  She called back.  She started the car, but the keys are now locked in it, while it's running.  Great.  Luckily I was waiting for her in the only place that was open near by, Giant Eagle (our 24hr grocery store) and ran into our neighbor.  She offered me her truck for the day as long as I returned it by 2:30 for her to go home from work.  "No problem!"

So I drove home and busted out my MacGyver breaking into cars kit (cuz we all have one of those!)  Turns out, a few screw drivers, a coat hanger and a (possibly antique) spanish fencing sword later...the car is in some sort of anti-theft mode and the door unlock buttons inside the car are disengaged!  Awesome, so we call AAA to come break in, and the car runs out of fuel while we're calling.  So we order 1 "lockout service" with 3 complimentary gallons of fuel (included in our membership.)  At least it's all gonna get better from here. 

 An hour goes by and the AAA guy shows up and unlocks the car!  Things are starting to turn!  "Fuel?  I don't carry fuel in this truck."  Oh fiddlesticks. (not the actual word choice I had in mind.)  Now we place another call to AAA and they send the same guy back, in the same truck, but with fuel this time....2 hours later.  Awesome.  In the mean time a good friend had picked me up the wheel studs I needed and we loaded up my neighbors truck with tools and went to fix the dump.

Kerith calls, and informs me that the car died about 300 feet from home.  Turns out it was never out of fuel, but the alternator went while it was warming up in the first place.  Yippy!  Okay, I promise this will get better.

So another neighbor who we've never met stops and jumps Kerith's car, which gives her just enough juice to get it back home.  *whew*  Her and Alexi are home safe.

At this point I have started fixing my truck, but realize that when you order wheel studs, they don't come with the lug nuts which are kind of necessary to hold the wheels on.  So my brother comes to the rescue this time and is able to bring me the lug nuts.  I go to put the wheels on the newly fastened wheel studs, and the 3 ton jack doesn't lift my dump truck loaded with 2 tons of salt high enough.  I look to my buddy who came to help out in the first place, hand him a big pipe, and say "you're not gonna believe what I'm gonna ask you to do."

He looks a bit stunned and explains that he really hopes we aren't thinking the same thing.  But I politely asked if he could lift my dumptruck up with that bar.  Time for a math break.  We have a 9,500 lb truck, with a 2,500 lb plow on it, and a 600 lb salter.  That's 12,600 lbs.  Then we have 2 tons of salt in the bed, so add another 4k and we have 16,600 lbs of truck.  Sure it's got 3 points of contact on the ground, but that's alot of weight for a 3 ton jack and 1 guy to lift.  Sure enough, it worked.  Got the wheels on just in time for my bro to show up with the lug nuts and got it all bolted back together.

Came home.

Got cleaned up.

Picked up Alexi and sat on the couch and asked Kerith what kind of "junk" I could have for dinner.  She knew I meant I wanted something unhealthy and good.  In between Alexi's high pitched squeals of laughter, I could hear the voice of an angle reply,  "chilidogs."

I am the luckiest man alive.

Instantly I felt lucky to be me, I have some incredible neighbors, even better friends, and family that makes anything the world throws my way go away with just a few moments of laughter, and some sweet sweet words of comfort. 

(Photo courtesy of post plowing nap time yesterday.)

PS  I finished fixing the truck at 2:07 and handed my neighbor her keys at 2:12.  Had 18 minutes to spare!!!

PPS  I couldn't help but think, quite a few times, why me? what did I do to deserve all this today?  Once I got home I knew, I didn't do anything to "deserve it," I'm just better prepared to deal with it!   I mean not everyone has the little "extra something" I have in my life that can completely distract me from even the most hectic of days!  "Got 47?"  You can't see it, but that's what Alexi's sweatshirt says.  (Thanks Gina!!)

So why bore you with all of this?  Well sorry if I did!  But I had a point, it's kind of the point of this whole "Designer Genes" blog.  The reason I started sharing our lives was to show anyone wanted to see, that raising a child with DS is not only something that shouldn't be feared, but it rocks!  This was a crappy day to say the least, but my daughter, Alexi, was the BRIGHT (and you know I mean really super awesome bright because it's in all caps) shining light at the end of the tunnel, that makes any care in the world all but disappear. Oh, and she has Down Syndrome.

It was that time of year again, Atlantic City Pool and Spa Show, YAY!!  #sarcasm

Don't get me wrong, I enjoy getting to travel once or twice a year for work, and enjoy even more that my wife and daughter get to join, and even MORE that we get to see the "Philly family" while we're out there.  It's just usually some boring classes and a bunch of the same stuff at the show, with lots to do and not much "down time."

This year was awesome.  Went out a day early and Alexi got to see lots of her cousins out there (we were missing you Charlotte and Hanna!!)  As always she had a blast watching the boys play, and even started to join in this time!  They brought her lots of fun toys and hardly rough housed with her at all.  She also got some awesome quality girl time with her cousin, Rylan, and got to show everyone her new crawling skills!

We kept pretty busy and got lots accomplished at the show this year and Alexi had a blast doing it!  She was up all day "walking" around the show, meeting people.  Immediately following the show, we had a happy hour party put on by our favorite liner company, and Alexi got to go!  Turns out she loves cocktails parties already!!  After that we went out to dinner with one of our distributors and she just refused to miss a beat!  We tried napping so many times, but she wanted nothing to do with it, she knew there was a party going on and just had to be a part of it.  That was a long day to say the least!  I guess that's why she passed out so easily back at the room, no matter how uncomfortable she looked.

We went back in to the show the following day to talk to a few more people and walked passed a massage station.  Kerith asked if I was interested in the free massage, I declined, as I really wanted to get done and get on the road.  She tapped me on the shoulder and asked, "Are you sure?" while pointing over to the booth.

There was a beautiful young girl working the booth who had a little "something extra" about her!  It's amazing how quickly my opinion of that booth's significance changed.  We walked over with Alexi and introduced ourselves, and immediately the girl's step mother came walking up to us with a big smile on her face (looking at Alexi of course.)  Yet another example of the instant bond we share with some of the families we meet, on a journey like ours.  We talked for a while and it was awesome to meet them.  She is 17, loves school, and was not afraid to tell me all about it.  She was a social butterfly, just like Alexi is becoming.  After talking to her for a while, I couldn't help but notice how articulate she was.  Her dad, who was in the middle of giving a free massage, said they started oral motor exercises at 2 months old and they really paid off!  We haven't been in contact with the family yet, so for now I'm not sure if they want their names shared, but it was great meeting them!  All in all this was by far our best AC pool show yet, and I can't help but notice this is a trend, everything we do with Alexi, is the best it's ever been. 

Nom nom nom

Alexi has been practicing lots of things these days, wow, where to start??

      We'll start with Occupational Therapy.  In OT Alexi has been working on a little bit of gross motor, but mainly eating and playing.  She is the most gracious sharer I have ever seen!  All I have to do is ask for what she is playing with and she will usually hand it to me before I even get my hand out!  Not sure how long this will last but it makes her seem like such a sweetheart!  (Not saying she isn't a sweetheart, just acknowledging I know this can't possibly last forever!)  Sharing is awesome, but she's been sharing with Tank a little too much.  Again, she looks so sweet doing it, but all he has to do is sit next to her while she eats and BOOM she sticks food in his mouth.  He's pretty well trained not to beg or take food from her, but when she puts it in his face, he just can't resist.

      Aside from "over-sharing" eating has continued to be her "best sport."  One thing we haven't mentioned in a while is the oral motor progression.  While fighting through 2 colds and pneumonia this winter, she has amazed us in her oral motor control and keeping her tongue tucked in her mouth so well.  Doing it while eating while sick is a good sign because it's much harder for someone with a smaller oral cavity to breath through their mouth and the tongue tends to protrude.  When we see her "tongue in cheek," (haha literally, which is kinda funny because...well nvm...im a nerd) we hang on to the hope that she will eventually have an easier time articulating in her speech.  Only time will tell, but we keep plugging away at the oral exercises to give her the best shot we can.  After all, we can already tell she has lots to say, so we might as well help make her as understandable as we can!

      Another fun new trick at the table is taking her own bites.  Now this girl is a shoveler in the first few bites, but after that she has been using the pincer grasp so perfectly eating one bite at a time...for a few bites, then back to shoveling.  We're working on it, but she's making progress!  By taking her own bites, though, I really meant she is holding on to a larger food item, and taking a bite out of it, rather than forcing the whole thing in her mouth.  I'm glad to see she is starting to use her teeth for something other than biting mommy and daddy!

      Her developmentalist has been pushing her just as hard as everyone else and she is doing great there, too.  She's working on coloring, and her biggest hurdle there is pressing hard enough.  She knows what the crayons are for, same with the paper, but when she does it, there's just not enough pressure to make marks every time.  She has been stacking blocks and other objects for a few weeks and immediately getting excited and knocking them down.  She's awesome at putting things "in" (like toys in her bucket or a box) and has been getting better at putting the square peg in the square hole and so forth.  She actually did the triangle first, which is supposed to be harder than the circle or square!  This concept still has a way to go, but on occasion she gets it!

      PT has kind of stolen the show lately with her starting to crawl "the right way" more and more often and pulling to high knees or standing more and more often.  She's got a long way to go in all of these, but it's very exciting to get her moving on this stuff, as she seemed to have plateaued for a little bit.  I am super pumped for her from a developmental standpoint, but definitely scared of being able to keep up with her once she starts getting around faster and faster!  She's quick and determined above all else, when she wants something, she is off to get it!

I certainly can't leave out Speech.  Her ST has been working with her with lots of different signs and encouraging different sounds.  This is Alexi's department to decide her own pace most clearly.  We certainly can't get in there and make her do any of these, the way we can physically manipulate some of her other exercises.  She has signed dog while looking at Tank and saying "diggy" several times, so I'm 99% sure we're gonna call it, that's the first word.  Even though she's been saying Dadadadada for like a year and even signed it once while saying it!!  Dada is obviously the easiest first babble, and for anyone who doesn't know, to sign dad you touch the top (front) of your head with your thumb with an open hand.  Kids with DS for some reason tend to use their thumbs to touch and it tends to happen with an open hand, so I couldn't quite count that either (unless she backed it up by repeating it for me, which didn't happen.)  She's got a few other signs she certainly understands, and sings me some awesome songs full of different sounds, so we'll keep workin' there!

Wow, that's a whole bunch of "updating!"  Whew, it seemed like that ran on a bit to me.  There is just so much goin' on since our last update!  Although we are certainly proud of progress, we're honestly not too worried about her keeping anyone's pace but her own. 

Feel the love of Christmas

In the words of B.E. Taylor, we have really been "feel(ing) the love of Christmas!"



So it's been forever since a blog, what inspired me to sit down and type this morning?

Last night.

Anyone who knows me well, knows I am not a fan of traffic and crowds of people.  Don't get me wrong, I love events, ball games, concerts, things like that, but I kinda despise the thought of shopping in crowds more than most.  So much so, that I moved into the sticks to escape the hustle and bustle.  That being said, I've put off taking Alexi to see Santa until last night, dreading the experience.

Boy was I wrong.  It started with a couple swift lane changes resulting in me missing two red lights worth of traffic and a quick right through a parking lot to get into the mall ahead of the line of traffic ahead of me.  These were all carefully performed, might I add.  Then I was driving to the entrance to drop mom and Alexi off so I could go park the car in the next township over and probably have to take a bus back to the mall (it really was that bad.)  Well on my way to the entrance I see a spot  3 cars away from the end towards the mall!  I know, it was a Christmas miracle.

So after pulling in to my amazing parking spot, I realized I was about to enter this cut-throat jungle full of scavengers and greed known as "the mall."  I took a deep breath and picked Alexi up from her car seat, and instantly forgot about my dread.  She was so excited, loves the brisk air on her face and although she had no clue where she was, she was PUMPED to be there.  Big smiles and laughter were coming from her the whole ride on my shoulders into the mall.  As I approached the door, I realized how big the smile was on my face, when I caught the eye of another man leaving, who was half smiling looking at us.  "He must be a dad," I thought.

So we get in there, look over the railings edge, and see there is NO LINE for Santa!!!  WOW!! I was so amazed, and assumed I must have been the only procrastinator that waited this long.  Ha, I'm silly.  Santa was on break for the next 45 min.  So we went on a quick walk around the mall, then decided to head back to the Santa booth and get our spot at the front of the line.  As the other families started to arrive behind us, everyone wanted to meet Alexi.  People weren't rude about it, but almost everyone that came by us, tried to make eye contact with us for that look of approval to come say hi to her.  There were lots of kids around, but Alexi must have had the biggest smile, because she was making lots of new "friends."


So ultimately the reason we were there came.  Santa came back and was super happy, I mean I know he's magic, but after doing this so many times over the last few weeks, he really is a special guy to be that excited to see each and every one of these kids.  Alexi got up there and had to check him out for a second, then naturally, she loved him.  She is such a sweetheart and loves just about everyone, so we never really doubted it would go well.

The Santa moment came and went, and we got lots of good pics to remember it, then as we were paying for the pictures they snapped, Alexi saw a little girl behind us.  I turned around to say hi and saw that she, too, had Down Syndrome.  Her dad was holding her and hadn't seen us yet, so I walked up closer to them to let her say hi and he turned to "a baby" to say hi.  He sad hello very nicely, but then when he saw Alexi's face he realized we were members of this "secret club" with him, and got even more excited to meet us.  Lilly and Alexi exchanged pleasantries and we went on our way.  But that moment was nice.  Knowing we are never alone on this journey.  We never said a word about it, but felt an instant friendship knowing they had crossed many of the bridges we are crossing, and they felt the same, knowing we had a similar journey in our near future as they were currently on.

 We spent the rest of our night at the mall in the food court talking with my parents, as they happened to go see a movie that let out just in time for us to meet up!  Even on our way up there Alexi was making friends left and right, and loving every single minute of it.  We were in the mall long enough that she was hours late for dinner and needed a diaper change, but she never skipped a beat.  She really does love seeing and meeting people out and about.

So this mall, that I remembered full of greed and frustration, was actually full of holiday cheer and people who were going out of their way just to spark a smile on Alexi's face.

When did I get so cynical?  After being there for hours, I wasn't done, because Alexi was still having fun seeing all the new sights and people, so we walked around and checked out the big new Dicks (sporting goods!) that recently opened.  Alexi had fun, but I've realized that the entire first floor is spandex in one form or another, and the second floor is a little bit of sporting equipment, winter coats, and some more spandex.  Kinda weird and I am gonna have to lose like 40 lbs if that is the clothing of the future.

So we are in the holiday spirit in full swing, just in time!  Oddly enough, I've got one person to thank for this sudden change of heart.  Someone that I thought I learned "the truth" about long ago.  Someone who's as real now as he ever was.  Santa.

Merry Christmas, Happy Holidays, and Happy New Year everybody!

How's Alexi doing these days?

She's playing on hands and knees but still refuses to crawl the "right way" and just bellys down and army crawls around.  Army crawling is something she's gotten pretty good at, but you can see her try to figure out the crawling thing, as she's kinda realized scraping along on her belly isn't the best way.  She'll get there, we're in no rush.  We've been doing lots of new exercises with her and she is pushing so hard to try to pull to stand, just doesn't have all the muscle strength, or even coordination quite yet.  Again, she'll get there.

What's all this mean?  It means we are learning every couple days of a new reason that our home is not "Alexi proof" any more!  It also means that we're enjoying every bit of "extra baby time" that we're getting with her.

Glee Uses THE WORD

At Designer Genes we have taken a controversial stance on this that could lose us some "fans" online (we really hope not!), but it's just how we feel.

http://www.youtube.com/watch?v=3Rez0WzGzzo

This hurt, yep it cut us like a knife when we heard Finn use this word.  So much so that Kerith and I looked at each other and immediately paused the TV to reflect on what it meant to us.  We decided to continue watching and see where they went.

Sue is known for being extremely outspoken and rarely at a loss for words.  She did not, however, fly off the handle in typical Sue fashion.  She instead stormed out in silence.  Uh oh.  Now she is REALLY "ticked."

Ok before we finish our discussion on our feelings about the usage of our kids, and this word, let me point out a huge factor in our optimistic thinking.

How many "household name" TV shows are out there advocating for our kids?

 Let me put it differently.  Noahsdad.com is one of our community's leading advocacy pages online.  He has over 23,000 fans, which is INCREDIBLE!!!  Glee's season 4 premier showed rating of 8,100,000 (8.1 MILLION) and that was DOWN 17% from their season 3 premier.  I would guess that noahsdad.com and most advocacy pages online are mostly viewed by families already in this fight, on our side.  Glee is reaching everyone.  Most of Glee's viewers are not in it just for the advocacy.  This kind of makes us really hope that Glee is going to resolve this issue in a multi-episode conflict between Sue and Finn.  Do we know that?  Heck no, but we sure HOPE so.

This show does something else we have yet to see by another current show.  This show has a character named Becky.  Becky is a chearleader, is known by the kids at school, and is generally sweet.  Becky has Down Syndrome.  Becky is also shown as kind of a "b****" at times.  What does this mean to us?  To us, this makes Becky a person.  An individual more than just the stereotypical sweetheart we tend to see portrayed more often in people with DS on TV.  Are we saying she is the first and only?  No, but to our knowledge this is the best current portrayal of a person with DS as an individual that is "more alike than different."

Becky is not the only character with DS, making her seem even more relevant.  Sue also has a sister with DS, and as confirmed in last night's episode, a baby with Down Syndrome.  The general population seeing this many people with DS in one show, kinda shows them that this isn't some "super-rare" situation unique to a select few poeple.  It is out there more often than typically thought.

This new baby is who Finn referred to as "retarded."  Yes Finn, the 19 yr old ex star QB, ex Glee star, currently lost young man trying to find his place in the world made this horrible mistake.  Is this show depicting this in an unrealistic, negative light just for ratings?  We don't think so.  This was shown in a real life context that, in our opinion, was not intentionally demeaning Sue's child.

Definition of "retarded:"  slow or limited in intellectual or emotional development or academic progress 
 -http://www.merriam-webster.com/dictionary/retarded

Finn used the word in it's literal context while comparing the child to and underdog that people should root for.  In our opinion, the main reason we are advocated for our children, is that they are kind of underdogs.  While we expect lots from our children, the reason we advocate is that society as a whole does not see them in that light.  Some of society sees our kids being different and sort of "below" other people, and that is what we fight to correct.

Could the show have done this without using the word?  Sure, but would it teach the lesson for people not to use the word?  How could it?

Now our line of thinking still stems back to an optimistic prediction that this is going to be spread out across at least 2 episodes to show it's importance.  If the issue is never addressed again on Glee, than we feel it was poorly done.  But in the interest of awareness either way.  I do not see ANY way for Glee to gain ratings over this.  I see it as a risky move that could lose rating by advoactes everywhere, by more effectively reaching those who are not already sensitive to this word.  Basically, the people who are numb to this word already, wouldn't be impressed by it's use, but the producers attempted to make THESE people feel our pain.

This made a HUGE impact on us when it was said, and would have no matter the producers work, but would people who are not as "touched" by DS be "offended" by the use of this word?  I doubt it.  The producers of this show made it a BIG DEAL.  All motion stopped.  The whole room froze.  Sue is so mad she can not speak to Finn.  Finn was immediately apologetic for saying that word.  I honestly thought this was going to be her last episode as she may have slapped him.  To us, they did that good making it a HUGE point in that moment. 

What about after that moment?  Should Will have reprimanded Finn?  Absolutely.  No question about it.  But at the end of the day, the show has done more than most to make a solid point about using that word already.  Remember, this is the same show that landed Lauren Potter, an amazing self advocate who has spoken before congress, as an actress.  I don't think she would approve of random exploitation for ratings.

All in all, these are just our opinions, and we are just hoping to shine a bit more optimism on what could be viewed as an otherwise gloomy day for our community.

Wow, now that's enough seriousness for one day!  So here's a picture of a future self-advocate being awesome @ CHP when she was recovering from her procedure!