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!

 

That Doesnt Go There!

"That doesn't go there!"

...not exactly the words you want going through the surgeon's head as he operates on your daughter.

Alexi started off her hospital tour here at CHP (Children's Hospital of Pittsburgh) with the upper GI scan on Friday the 12th that showed a definite obstruction in her duodenum.  The duodenum is the first bit of "plumbing" after the stomach.  They could have checked her in that day, but let her go home over the weekend and attend the Three Rivers Dash for Down Syndrome! 

Monday morning Alexi got some breakfast and a bottle, then off to the hospital we went.  She needed to have a barium enema in the morning and we checked in for our extended visit soon after.  She was on a diet of clear liquids only on Monday and Tuesday morning was banned from anything by mouth.  In went the IV to keep her hydrated and the NG tube to suck everything out of her tummy.

She hated the tubes but eventually learned not to tug at them, allowing her to remain unrestrained.  With no food she was pretty tired anyway so she just wanted held non-stop.  No complaints here, holding my daughter has got to be one of my favorite things to do these days.  Same rules applied for Wednesday before surgery.

Alexi was called down to the OR and we didn't wait long before she was taken in by the anesthesiology team.  I don't think I'll ever forget those eyes looking over her shoulder as mom gave her a hug and kiss.  Then as soon as the nurse picked her up, Alexi was happy playing with her mask and never looked back as they walked away.  I had gone over that moment in my head a hundred times and thought I was prepared.  Man there is no way to prepare for that feeling!


So we had been prepped, this surgery was going to take around 2-3 hours.  We knew that was just an estimate and were prepared for a longer wait.  So after about 2 and a half hours the liaison nurse came in to give us our update, and said the were no longer to continue laparoscopically and would have to proceed with an open surgery.  We had known this was an option if the duodenal web was too difficult.  What she said next is what alarmed us.  (Kerith and I are sort of pro active, and did a bit of research on Alexi's condition prior to surgery. ) The liaison nurse informed us that the game plan had changed due to the surgeon finding that Alexi had Malrotation and some twisting.

That first part is hard enough to hear, it means that when Alexi was developing, her organs never rotated the way the rest of ours did, causing them to be nowhere near where they are supposed to.  In laymen's terms, navigating through Alexi's intestines was like trying to use the new maps for the iPhone 5!  (ok bad joke but I'm tryin to keep it a bit light around here)  This alone can cause lots of problems and made the surgery much more of a procedure than initially planned. 

The second part of the nurse's statement is what floored us.  The word twist is much more serious.  The configuration of Alexi's intestines made them much more vulnerable to twisting around each other.  Wrapping around each other can cause constriction, which can cut the blood supply to organs and cause organ death (gangrene.)  The gravity of the situation went from bad to worse...way worse.

The next hour passed with no update, then another 30 min.  I honestly can not believe it was only an hour and a half, at one point I remembering asking how long it had been since the last update, and my mom informed me about 15 min.  I literally thought over an hour had passed at that point. 

Finally we were updated again that they were almost done repairing her and we going to start closing up soon.  We asked if there were any complications with the twisting and the nurse said he didn't think so because they would have mentioned it.

A bit of relief.

I don't know how much longer it was, but ultimately the surgeon came in and went over the procedure with us.  It turns out there was no twisting at all.  The malrotation required a more in depth procedure, but was completely repaired.  They are unable to put the organs where they are "supposed" to go, but reconfigure them in a much safer way, reducing the risk of twisting drastically.  As a result of reconfiguring her organs, her appendix would have been in the opposite side of the body and up much higher than it would normally be found, so it was removed to prevent misdiagnosis if Alexi ever had an issue with it.  BUT, no twist means no permanent damage to her other organs!

Wow, an organ (however useless) was removed from my daughter and that was the most minor part of her surgery.  They did still find and remove a duodenal web, without needing to perform a bypass.  So that part went very well.  Finally we can breath a bit easier.  Alexi is going to be ok.

Update:  Since surgery Alexi has been in quite a bit of pain but is taking it very well, considering she doesn't know why this is all happening to her.  She now has the NG tube, 2 IVs (one currently active), a pulse ox, some monitor leads, a catheter, and an epidural.  She is seriously not happy with all of these tubes and wires but is doing surprisingly well not removing them.  So far she only needed the NG tube replaced once and the catheter replaced once.   She's behaving mostly because she is asleep 90% of the time and delirious the other 10%.  We'll see how the next few days go, but no matter what, she is recovering.  That is so good to know, she's done, it's time to heal.

No More Juice!

Ok, let's start the the begining, maybe this could help someone else get the right treatment a little sooner.

Alexi was born at 30 weeks, so she had some very close monitoring for the first couple months, even back then we noticed trouble transitioning from IV nutrition, to the feeding tube, then again from the feeding tube, to digesting breast milk.  The doctors watched closely, but since everything eventually passed through they decided there wasn't a concern yet and she got to come home.

Since birth Alexi has been thinner in the mornings and had a big old round belly (like daddy's) by the end of the day.  We've brought it up at every doctor visit and they felt it was a result of her being low tone.  It just seemed odd to us that no matter how much core work we did with her, it didn't go away at all, in fact it got worse the older she got.  She's fought constipation off and on her whole life but in the last 4-5 months is been more often than not.

The constipation seemed to get worse when we started solid foods and the chronic nature of her constipation alarmed us, so we scheduled specific Dr visits around it.  They felt it was a result of low tone and that she needed more juice (we had been told that at every Dr visit for months.)  We did as instructed every time with no result.

One day, while we were visiting her family from across the state, Alexi began vomiting.  Our first fear was that she ate something she was allergic to.  We called the Dr and went over everything she ingested and there was no real concern of allergic reaction.  We continued our stay and Alexi did pretty well at first, but then began throwing up more and more.  Once we returned home and saw the Dr, they decided she was throwing up from being constipated for so long, and put her on mirilax.  This seemed to work for a day or two, then right back to vomiting.  They (Drs) were pretty sure the vomiting now was a result of being on mirilax and being gassy, so anti-gas medicine.  Then after that the vomiting was blamed on indigestion, so on to zantac.

With all 3 of these meds and Alexi still vomiting we saw a nutritionist for Alexi.  This nutritionist immediately knew something was up when we explained Alexi's belly situation to her (6 pack in the morning, looks like she swallowed a beach ball at night.)  The nutritionist did her job and advised us on some foods, but knew she was going to be no help, and recommended that we see and GI immediately.  So we called the pediatrician and had a GI appointment scheduled.  The GI also seemed to lean towards low tone being the main cause, but agreed to order an upper GI scan to be safe.

The upper GI scan showed clear as day that Alexi had a pretty serious blockage/restriction in her duodenum (first section of "plumbing" outside the stomach.)  They were confident that she had what is known as a Duodenal Web.  This caused Alexi's intestines to work as efficiently as a clogged drain pipe.  Sure the sink will drain, but it's gonna be a while, and the bigger particles aren't goin through.

Picture break!

Here's a few shots of Alexi practicing her modeling faces...

Show me Excitied!  Now Anticipation...  Impressed!

Bored...  Now like your thinking.  Now surprised!!

Ok, whew!  Got that out of the way.  Why was I so detailed in explaining what we went through trying to figure this out?  Was I complaining about the Drs?  No, certainly not.  I'm simply trying to help anyone else who may read this and see if we can't help them get the ball rolling on fixing the issue before the situation gets worse (like it did for Alexi.)  We were semi-adamant that there was something serious wrong with Alexi, and the Drs kept denying it.  It's not their fault, but we have learned more than ever that we need to be unafraid of putting our foot down and making sure a situation is checked out, not letting it go and seeing if "more juice" does the trick.

Now onto the hospital stay...  (see next blog entry!)

 

Big Little Girl!

It's a rainy day here in Nottingham, Pennsylvania.  This rainy day is one that's been long overdue.  Sure, we've had some off and on wet weather lately, but this time Dad got to stay home from work and spend the day with Alexi!  Between the busy weekends and long work days, I really haven't had the time to just take in how lucky I am in a while.  Today during Alexi's lunch it kinda hit me, this girl is growing up so much!

It's no secret, I've always said that people are NUTS for thinking kids grow up too fast.  I mean the quicker they grow up the quicker they do more fun things, right?  Well over the last couple weeks it's really been starting to hit me, that this little baby I have is becoming less and less of a baby every day.  At lunch today, I prepared an elaborate feast of squash and pears...mmm yummmm. Alexi liked it, so it must have been a good combo!  While devouring this spread, Alexi was more eager than usual to try and feed herself with the spoon.  This is something we've been working very hard on with her in and out of therapy, to help with her everyday life.  Us coaching her to do it is one thing, but seeing her want to do it so badly is great to see.

After a few bites of squash I would put some pear bites on her tray and let her chase them around (slippery little buggers) and feed herself.  She's been doing this for a long time, but one of the things she started over the last month is really telling us which food she wants at a specific moment.  She finished her pears and I went to give her some more squash, she politely yet sternly pushed the spoon aside while reaching for the container of pears.  We just love that she knows what she wants and isn't afraid to show it.

Her eating progression isn't the only thing making me realize my baby girl is growing up, she's been working hard and getting MOBILE!  When we started this journey we wondered what a child could possibly do in therapy, let alone 3 different therapies, but we were all for learning.  Well it really is amazing how much work we can do with our little one to encourage development, and it's showing!  Alexi is drinking from straws (among other cups), trying to put the square blocks in the square holes (not quite mastered yet), and crawling around like a champ!  Okay so she's army crawling, but she is getting herself around!  I think that last one is the one that's been causing me to wonder if I'm ready for my little girl to grow up just yet.

Alexi just had her EIS (Early Intervention Service) 1 year review.  At the age of 13 months, Alexi's scores ranged everywhere from 8 months to 12 months for different aspects of her development.  No matter where she "scored" we are very proud of where she has come and know she is working hard to reach her goals.  So what do these scores mean?  To be honest, nothing really, they are a way to evaluate what areas she could use more work, and what areas she is excelling in, so we can work harder on some and keep up the good work on others.  The evaluation is also a good time to reconsider what services she is receiving and what changes to make in her routine.

Alexi will now keep seeing her developmentalist every other week, see her OT (Occupational Therapist) every week, increase PT (Physical Therapy) to every week, and add ST (Speech Therapy!)  We are looking forward to the new schedule and meeting some new therapists!

This little girl has taken her time, but now has another development to show off, her first tooth!!

Now it's time to get off the computer and get back to playing!

One year in

One year ago today, our lives were changed forever.  It was about this time (9AM) that I got to go see my daughter for the first time since she was wheeled past me after her delivery.  We had just found out that "there is a good chance that she has Down Syndrome."

What did that mean to us then?

Having a child with Down Syndrome was pretty scary.  We weren't sure how everyone would treat her, and had a tough time with the initial acceptance ourselves.  To be honest, we felt a bit cheated.

What does it mean to us now?

Having a child with Down Syndrome is pretty awesome.  She does get treated a bit differently from time to time, but she simply seems to get a bit of extra love.  Everyone in her life is so great to her.  As for us?  We wouldn't change a thing!

This little miracle has taught us so much in her first year.  From the NICU experience to all of the things we learn in therapy, none of that even compares to what she, herself teaches us.  She shows us a true joy that can be found in the simplest things.  It's amazing what we used to think of as exciting or a great time, and what we do now.  I think I got more joy out of watching and listening to her beautiful piano key mashing than anything else lately.  Everything we do in life is enhanced having her experience it with us.  She's even got her dad's taste in thrills, as she loves to be thrown up in the air, and gets a huge smile on her face if you push the cart a little faster in the grocery store.  I can't wait to see her on her first quad!

Alexi celebrated her Birthday a bit early last Saturday and had an amazing time!  She even sat up and opened every present and couldn't wait to play with them all.  Her first real cake experience was also a hit.  She wasn't quite sure how to go about eating her first Bethel Bakery smash cake, but once she got into it she LOVED it!






This blog is about us raising our daughter, Alexi, who happens to have Down Syndrome.  In the past year I am pretty sure she has taught us more than we've taught her.  It's been an awesome ride so far and we really can't wait to see where she takes us in the next year.

So Happy Birthday to Alexi, and thank you for all you have done for us.  And thank you for the cold we are both home sick, fighting today. 

365 days

Sometimes it seems like I can't remember life without her.  She's the highlight of every day, my biggest inspiration.  Though this is true, it's also hard to believe she's already turning one year old.

I make no sense, I know.  Has it really been a year since that day?  I remember like it was yesterday.
Doctors and nurses swarm Kerith, Kerith is rushed to the OR, Alexi stops by to see me on her way to the NICU.

 The weird thing is, I have no idea what happened from that moment until I was at Kerith's side when she was waking up from her emergency C-section.  Then Dr. Karamchandani changed our lives in a new way forever.


As if having a baby wasn't life changing enough, Dr K. came in to give us the news.  Our little girl made it, 10 weeks early, well under 4 lbs, no immediate procedures needed, even more healthy than we had expected, and has Down Syndrome.  


I think by now most of you have heard or read the story of that moment, the roller coaster of emotions we encountered.  But now that seems so silly.  I wish we knew then what we know now.


This has been the undisputed best year of my life.  Alexi reaches her milestones, has an incredible personality that emerges more and more each day, and is so stinkin smart!  I love watching her figure things out and try really hard to accomplish the little goals you can see she has set for herself.  She just does it all at her own pace.

So what does that mean?  That means she is sitting on her own, loves to laugh and smile, has her favorite toys, loves music, and knows when nothing will make her happy but her mother's (or sometimes father's) arm's.

She's adorable and sweet and loves people.  She has accomplished alot in this past year, and we are very excited to celebrate it all with her at her birthday party!

Alexi's cousins, Aunts and Uncles, Grandparents, and even Great Grandma Gigi are all coming in from across the state to celebrate with her which makes it even better!  So for every one coming to the party, here's what to expect:  A 1 year old.  She's got lots of personality and gives smiles out all day long like it's her job.  She's just about  into 12 month clothes and super close to being into the 1 yr old toys and activities..



I know shopping for any kids birthday party is a challenge for me,  so I figured it may be even more difficult for some families to know what to expect from Alexi.  Honestly, you can't go wrong, she's gonna get to the 1 year old things real soon and loves everything.  She plays trucks and has her favorite doll.  Right now her absolute favorite toy is her piano.  She is in love with making music.

The truth is, this past year has been so amazing that we are just excited to celebrate it.  We've been so busy lately that this little trooper deserves a bit of extra attention and celebration.  She's been working 50 hour weeks and is ready to party!

For those coming, I hope this was somewhat of a help, and for those unable to join us at the party on the 21st, Alexi's birthday is actually July 26th, so what ever comments you leave we will be sure to read to her, as being read to is also one of her favorite parts of every day!

This Wonderful Child

Well, it's no secret and I feel like a broken record, but this season has been super packed with work for the family business.  Busy is good but means less time to type, I mean I could be typing more, but that's time that I am not playing with Alexi, so I'm sure you all understand where my priorities have fallen!

The lack of updates is certainly not due to a lack of progress!  This sweet little girl is amazing us day after day.  She is becoming so much more vocal and active as well.  This morning we let her play with the TV remote and it was so funny the way she handled it.  She would press a button, then look at the TV to see what it did!  I was super impressed that she made the connection, but even more impressed by what she did next.

We had the news on and all of a sudden it paused.  I jokingly told my wife that we had to stop talking because Alexi paused the TV until we were done talking over it.  No sooner than I said that, did Alexi rewind the news and replayed the last segment, which contained a library.  This was hilarious to us as Alexi LOVES books, possibly more than any other toys.  Too cute, right?

So I went back to working on emails and Kerith went back to making lunches, then we realized the TV was on some cartoon we had never seen before!  Haha, it was too cute not to share.  This girl is a genius!  (We're not crazy, we know it was all just coincidence, but it sure was a fortunately hilarious sequence of events!)

I got no photos, but I have a rule for these entries, all of them must have a picture!  So today I'll share with you one of our favorites from our photo shoot with Alexi in the backyard this weekend.  Enjoy.

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"Hey hey boo boo" or Alexi see's a bear!!

Holy wow has this spring been busy!  We've been workin' hard in therapy, fighting a crazy stomach bug, swimming, camping, bear spotting, and working!

It's hard to believe it's not even June yet.  Alexi has been working very hard toward crawling and for the first time we are seeing her take a bit longer to accomplish a goal.  It's a little bit of a reminder that progression has a different schedule in this household than in some others.  We are seeing other kids her age crawling, and working on walking.  It's kind of a reality check in ways.

 Until now, we knew she was going to progress at her own pace, but considering that she was early and has a disability, her "pace" was so impressive that it kinda slipped our minds.  You see, she's so darn cute that there's nothing "different" about her in our eyes.  It's weird, to be able to talk about something (DS) to so many people every day of our lives, and yet forget about it at the same time.  It's really something I just can't explain.

I've always thought parents were crazy for complaining that their children grew up too fast.  I mean heck, I always thought the sooner they get older, the sooner they have fun toys, or the sooner they can cut the grass!  I can now appreciate where these parents are coming from and feel a bit lucky that Alexi is hanging on to each stage a little bit longer.

So no, she didn't reach Dad's goal of walking by 10 months (which was set before we knew she was going to be born 10 weeks early or has DS,) but she is making us some of the happiest parents in the world.  Who wouldn't love to have this cute baby stay "a baby" just a bit longer???
 
And I can't talk about progression without celebrating how well she's doing in other areas.  She is doing GREAT with her eating and is seeming to understand some words and signs!  She is definitely learning how to "work those eyes" to get dad to do just about whatever she wants, too.  Can't say I'm proud of that, but you try and resist...It's hard!

 Okay so enough about all that stuff, lets get to the bear!  Alexi went on her first real camping trip this past weekend and loved it!  She was checkin everything out and havin a great time hanging out with some new people.  We hadn't been there long when I heard mom yell over to me, "Kevin! Bear!!"  This was not followed by "HELP!!" yet was followed instead by, "Get the camera!!!"

I grabbed the camera from the tent and came running.  I didn't even make it over to where they were sitting by the time "Uncle Paul" came over with his quad and told me to jump on.  The bear had wondered off so we rode up ahead of his path and stopped to wait for him.  Sure enough he came within about 20 feet of me when I was ducked behind a log pile.  That was AWESOME.  It was the closest I've ever been to a bear, heck it was the first time I ever saw one in the wild.

I waited 29 years to see one in person, Alexi got to see one in just 10 months!!  It sure was exciting but we were aware of the danger as well.  Alexi was in good hands with people who are very familiar with the wildlife in the area and the bear wasn't the only one at camp expressing his right to "bear arms."

  (For entertainment purposes only, no political statement intended.)

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And so began her love affair with water!

Well things have been going very well in Alexi's world!  She has been a busy, busy girl.  Eating is probably the most significant step forward for her lately, and she sure loves it.  All of the oral therapy we have been doing has certainly been paying off.  We have her Occupational Therapist to thank for that!

Although we are sad to see her go.  Alexi has had her final visit from her original OT as we recently discovered she is normally a supervisor that has been filling in for a few months.  Duty called and she is back supervising and has one of her best employees coming to start seeing Alexi this week.  As much as it saddens us, we have heard great things about our new OT and can't wait to meet her.

Aside from eating, Alexi has been reaching goal after goal on her developmental checklist.  All that hard work is paying off and Alexi is having fun every step of the way.  All of her therapy sessions now start between 7-8am and give us the rest of the day to get work done!  Yay for all of her therapists being able to do that for her(us)!!

Another new experience Alexi has been trying out is swimming!  So she's not quite swimming yet, but she sure does love the water!  We started her out by letting her take a dip in the hot tub.  Don't worry the temp was nice n warm like a bath.  Temperature was the last thing Alexi was thinking about though, she seriously could not get enough of playing in the water.  As a parent, you just can't beat seeing all that pure excitement from your child, it's gotta be one of the best parts of life.

 

She was pretty upset when we made her get out, which made me pretty happy knowing she enjoyed it that much.  If you don't already know, I'm a pool guy by trade so I've always hoped she would love the water like I do.  That's why we got her in the pool the very next day!  The heater had been on for a day but the pool was still a bit chilly.  We weren't sure how she would take to the big difference in temperature.  Yet again, she couldn't have cared less!  She was just so pumped to be in the water.  I "swam" her around the pool and it even looked like she started trying to swim through the water!  It is SO very awesome that she enjoys the water for more reasons than just the family business.

As some of you may know, water is GREAT for rehabbing injuries and exercise.  Water gives resistance, resistance helps build strength.  Building strength helps combat low tone.  One of the physical characteristics of children born with DS is low tone.  So am I glad she likes the water because I am a pool guy myself?  You bet!!  But knowing that every movement in the water is helping her gain more and more muscle development makes it that much better.

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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)

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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. 









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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.