Life as a Leach

This video is so, so, so  true.  I have a unique perspective on this, being the mom of a little girl without a known life expectancy.  I can say that some of my favorite memories have been the "ordinary days" we've had...watching cartoons on the bed, making silly faces in the mirror, having family cuddle time, singing along to The Imagination Movers in the car...it's about finding the every day miracles. Grab your tissues, folks!  You're gonna need 'em.

Please watch this video.  You won't regret it.  Get your tissues ready--especially if you are a special needs parent! "When those eyes are looking up at mine,  every trial,  every fear,  in that moment disappears.   And you realize  that it's all worthwhile  when it's your child." This is just about as true of a song as anyone could write.  This woman is a special needs mom, and she wrote from her heart. I'm often asked how I do it all. My first answer is that God will give you strength to handle any situation. This is my second answer.

If you're wondering if the kids had a good time at Caleb's Star Wars party, just watch this video of Darth Vader getting attacked by a bunch of young Jedis! There are many more pictures and videos to show!  :)

I finally figured out how to get the videos off of my phone and onto my blog.  I'm not sure I could ever do it again!  Moral of the story:  take important videos with your camera!!! Abby is so excited to be trach free! Caleb's first glimpse at Abby trachless.  Get your tissues.  :)

Caleb's first glimpse of Abby without a trach!  Get your tissues.  :)

Two videos from the big day! Here is the actual decannulation.  It's so anticlimatic!  A lot of people couldn't believe that this was it...it's so simple, yet so HUGE! Abby got her voice back really quickly and spent the rest of the day saying, "No more trach!"

Here's little sampling of some of Abby's words.  Keep in mind that she is 19 months old and I  am an extremely amateur videographer, so the video is less than stellar.

Caleb and Abby love dancing to "All the Single Ladies!"   The girl learned to climb up on chairs to dance pretty quickly, and the boy is a dancing machine!  

Hope you're not getting tired of these videos.  If you are....too bad!  I've been waiting a very long time to take videos of my mobile girl! Anna didn't seem to know what to with Abby when she started coming toward her....

You can't see her face when she's walking, but she has a huge grin.  She's laughing the entire way because she knows she's doing something big!

Not only did Abby decide that she'd walk across multiple rooms today by herself during therapy, but she also carried something and made it through some obstacles.  WOW.  This girl is amazing and stubborn!!! I didn't cry until Caleb came down and I surprised him with her walking.  The excitement on his face was priceless and he gave her the biggest hug ever.  It was so darn cute!!! Go Abs!  There is NO stopping you now!!

I gave Abby a strawberry in one of those little mesh feeders.  I didn't expect much, but thought maybe she'd taste a tiny bit of the juice.  I certainly didn't expect for her to go to town on it like she did! She ate almost the entire thing by the time she was done. My favorite part of this video is the adorable grin she gives right about at the 1 minute mark.  It warms my heart.  I took this video on what was a rather tough day for me, and then I replayed it about 10 times just to make myself smile.

Anybody know that song?  It's an old camp song that I learned as a kid.  And it's what Abby has been doing a lot of recently! The other day I decided to be an extra nice momma and give Caleb a juice box--we are water and milk people, but I had a few left over from his birthday.  Abby seemed interested in it, so I figured, why not?  I'll try it! I squeezed it in the first few times so that she could get the taste, but then once she decided she wanted it, I made her suck it through the straw herself.  She got a little angry at first, but she quickly learned! Once she mastered that, I tried several different water bottles.  She really liked the Thermos bottle, which was much like this Hello Kitty one:   Except that it was Toy Story, not Hello Kitty.  Caleb wouldn't dare let her use his Star Wars one.  That's sacred, apparently.  I need to get this girl her own Hello Kitty water bottle!   Side Note:  We have a lot of wa...

In an ideal world, I would have posted this last evening, after my children quietly drifted off to dreamland while I sipped hot tea and nibbled cookies. Ha. Life doesn't always work out the way you planned, so that's why I'm posting today.  Better late than never, because yesterday was a great day!!!!!! Why, you ask??  Welllllllllll, if you're friends with me on Facebook, you already know.  If you're a blog buddy, then TWO wonderful things happened yesterday! 1.  Abby stood for over 20 seconds by herself during therapy!!!! 2.  Abby said "Momma" as her very first word!!!! The girl is so stubborn.  Of all the times we were trying to get her to stand without assistance, it wasn't until she [forcefully] pulled her hand away from my finger that she finally did it.  Everything has to be on her terms!  All of us froze when we saw her do it because we didn't want to scare her and cause her to fall!  She eventually started crying and turned...

Abby has recently begun to mimic our sounds quite a bit--especially when her Passey Muir Valve is on and it's easier for her to push air through.   Here, you'll hear her doing lots of mimicking...she even "speaks" the syllables in words a lot of times now, which we are very excited about.  

Rare Disease Day is this Wednesday, February 29th.  I want to invite all of you to wear jeans/denim/blue on Wednesday in honor of Abby and all of the others living with a rare disease. It can be extremely isolating when you are a family dealing with a rare disease.  As much as people want to understand, they just can't.  Starting Rare Love has allowed me to connect with others who share similar feelings, but battle different diseases.  Likewise, participating in events like Rare Disease Day helps to raise awareness and feel just a little less isolated. Watch this short video about Rare Disease Day and please consider joining me on Wednesday!  :) PS:  It's considered a "rare" disease if it affects less than 1 in 2000 people.  That really puts into perspective just how rare CCMS is...I don't think they can even say "1 in ____."  1 in 1 billion?  All I know is that it is extra rare, and we are extra thankful for her life!

They're my favorite!  :) PS:  The turquoise thing is her Passey Muir Valve, which is why you can hear her so well. 

Little Mozart has discovered the piano! This girl LOVES music.  She dances and claps to any kind of music, and really enjoys the piano.  Her favorite song is "Little Red Wagon" by Raffi.  She starts bumping up and down as soon as you start singing it! As a fun giveaway to celebrate 200,000 hits, I want to hear about your favorite songs!  Simply leave a comment here, on Facebook, or through email sharing your favorite song, the name of the writer/band, and a short little statement about why you love it!  You can enter up to 3 songs!  Just post each entry separately, because I'll be numbering all of the entries and having Caleb choose a number.  Multiple songs in one comment will only be counted as one entry. As a bonus, you get an extra entry if you link this giveaway to your own blog or Facebook page!  Just write in a comment that you did so.  (You can get an extra entry for each one if you put it on your blog and FB page!)...

Remember the zebra Abby got for Christmas that she was terrified of? Well, she's decided that it's pretty fun after all.  :)

Caleb's favorite character from The Chronicles of Narnia   :) Oh, and by the way, that's not Darth Vader breathing in the background...just Abby!