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!

 

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!)