Tuesday, February 21, 2012

Communication 101

A quick post on one way my mostly non-verbal child communicated with me last week :)

On Tuesday Samuel had surgery, no worries, all is well and he is healing beautifully!  I tell you this because I want to be sure it's noted there is a reason I was giving him pain meds - ha ha!  They sent him home with some Tylenol with codeine, the good stuff :)  He stayed home from school Wednesday, then, because he's a rock star, went to his Thursday morning class and home with Rachel for the afternoon.  I debated giving him the pain meds on Thursday morning, but thought what the heck, surgery was pretty painful and it's his first day back at school.  Plus, they didn't seem to affect his energy level or happiness at all... seriously, at all.  One last dose for his first day out and about, go for it!

Here is the play-by-play of how I was rewarded for that decision...

Samuel gets lunch around 11:30, and then down for nap... I go in around 2 because I hear him stirring.  Hi sweet boy!  Love and kisses, then straight for a diaper change, apparently sleeping makes you pee more.  Change the diaper, stand him up... something seems different but I can't put my finger on it.  OMG there's no gtube button sticking out of his belly!!!

Frantic-ness sets in... how did this happen... where is the gtube... how long has it been out... holy cow, not another surgery.  That's right, once the gtube comes out, the hole starts to close, so if it's out for any significant period of time, then it's surgery to get it put back.  There's no magic time frame this can happen, just depends on the kiddo.  And of course, since Samuel gets no nutrition through his mouth, the surgery to get it put back in would have been right away.  Oh no my friend, not today!

The old tube is nowhere to be found, so I find the replacement gtube and start pushing.  No, probably not protocol, but after a while, it works :)  At that point I was happy for the meds still in his system.  I test it, it's definitely in place... whew.  Frantic-ness starts to decrease... now back to my original questions, one of which being where is the gtube and how did it come out?  Not in the bed, not in the blankets, not under the mattress, not under the bed... oh, wait, yep, under the bed.

Here's the kicker, and why I knew the pain meds had to go... it was still fully inflated!!!!  Seriously, the kid has never pulled it out before!  Any time it's come out, it's either caught on something or the balloon had issues and deflated, but self inflicting this just makes me cringe.  Guess someone was trying to tell me that the pain meds needed to go :)

Here are a few photos I found to illustrate...

This isn't actually Samuel's belly, but for describing a gtube, 
might as well be... we have the exact same gtube.

This is the entire gtube... that's it, all of it!  Seems so simple, I know!
So you can see from the belly photo above which part is outside the belly (the part between these fingers), and below is simply a tube and a balloon.  The balloon is what holds this thing in place.  To get it in, simply deflate the balloon, put it in the hole, then inflate the balloon and wah-lah!  You have a gtube.  

That said, you might understand my confusion and wincing when I realized Samuel pulled it out while the balloon was inflated!  Ouch!  Crazy kid, I love that guy :)

These photo have nothing to do with the gtube coming out, just some cute photos from a speech therapy session at ihop I've been meaning to post :)  I suppose speech therapy/learning to eat and gtubes do have something in common, ha ha!

 I think someone likes therapy :)

 But, not necessarily eating... this is totally the "what's that over there" move to try and divert attention.  Too bad mister, we're on to you!

Someone found a friend!

Monday, February 6, 2012

New Places and Faces

We are one week into our new schedule... which means all new schools, caregivers, and teachers for Samuel.  What a great week it has been!  I mentioned my anxiety a few posts ago, and this week has gone even better than I could have hoped.  Samuel has handled these huge transitions so well!

A few photos pieced together to show you Samuel's new days :)

 First day at the local program just for kids like Samuel... and he loved it!
He was smiling from almost the second we set foot in the classroom until he left, with brief pauses for things like me taking this photo and when I left.  But they were brief!

 On his way to the lunchroom for morning snack with his class.  It's so wonderful, the three women who teach these kiddos are so good at what they do.  There is also a lot of time when they break into really small groups, because the ages and abilities are so varied.  For the most part, Samuel's group consists of two girls and one other boy.  The four of them are just begging to be squeezed :)

This program is from 8-11 Monday - Friday.  On Monday Rachel picks him up after school and heads off to PT, ST, then OT.  Whew.  Tuesday - Friday Samuel heads from his school to George and Olivia's school!  I wanted to cry the first day, and every day since then, knowing they are together!

 The bus brings him from one school to the next, and Samuel is like a celebrity :)  All activity ceases on the playground for garbage trucks, fire trucks, and of course school buses.  Samuel practically runs from the bus to the gate!

GREAT group photo to insert here, but wasn't sure other parents would be okay with it... boo.

Samuel gets there just in time for lunch... luckily everyone was looking away from the camera so I could post a photo :)   For now, he has a shadow who stays with him at George and Olivia's school.  She has been wonderful at both taking care of him and helping him to stay on task!  What I mean by taking care of him, is she does the gtube feed, gets him settled in for nap (even though he never sleeps), and makes sure he's getting what he needs.  While the school has a wonderful mentality that Samuel being there is good for everyone (very research based, I love it), we also wanted to be sure that he was getting what he needs and getting used to his new school without taking up all of the time of one of the teachers.  After a month, we will re-evaluate to see if a shadow is necessary :)    

 Getting to this school right before lunch is perfect timing!  Samuel gets to sit with a group of other children who are all eaters, and practicing family-style dining and serving themselves for the most part.  What a great learning experience for him!  Who knows, maybe he will be eating cake next year :)

How sweet was this, the school waited to celebrate their birthday until all three kiddos were there!  The class made great cards with hand prints and names, I completely see them framed in the kids room.  Cupcakes were included in this celebration, hence the sitting outside - so smart!

Off to the classroom!

From there comes nap time and then free play, including lots of time outside.  It is a great time for Samuel to both play with his new classmates and gain independence :)  His new friends have been so good to Samuel - they're excited that he's there, they help him, and they include him.  He is grinning from the time I drop his off until the time I pick him up, we couldn't be happier!  Another big step for my guy!

Wednesday, February 1, 2012

Three 3-year olds!

Happy Birthday #3!  Oh my goodness!  How has it been three years????

Things I did wrong on their birthday... never slowed down to make them pose for a group shot.  Never slowed down to take a family picture.  The good news, both of those can totally be re-created :)

Things I did right... went out on a limb and invited George and Olivia's entire class.  Rented a bounce house.  It was an awesome day!!!  The kids were thrilled to have their friends over, and slept incredibly well after a day of bouncing :)

Something the other parents at the party mentioned... of course the kids loved being together, but it was also nice because the parents don't know each other well, so it was fun for us to get together!  Plus the weather couldn't have been any better so it was a great day to hang out outside.  I'm hoping they all had the same nap success I did :)

Something the folks at the party probably didn't know... and maybe part of the reason I had trouble slowing down (as mentioned above)... was that party was so much more than a celebration of 3-years for us :)  My babies have made it to three!  I hate that their start was so rough, but look at them now.  Who knew?!  They amaze me every single day, and we feel so lucky to be their parents.  I can't imagine life without them, they make everything better, including me.

Plus, not only is this the first party we've ever actually invited kids to, there were just as many kids as adults :)  My Samuel is getting healthier!  At their first birthday, Samuel almost didn't make the party and then had a horrible next day... at their second birthday, we were psyched to all be home and he did much better, but was still very medically fragile... what a great third birthday!  Maybe by his fourth birthday he will eat some cake?  Can't hurt to hope!  (If he is eating anything by his birthday next year, mark my words, I will find a way to make it into a cake!)

A few photos from the day...

Direct quote when I ordered the cake: I would like princesses and dump trucks, please.

The main event - who knew one thing could bring so many hours of bouncing happiness?!

They dropped the bounce house off a few hours early due to a busy day for the rental company... I kept the kids content inside for a while, but the bouncing was irresistible!  These three little monkeys had so much fun!  At one point I thought they wouldn't even notice when their friends showed up, but I was wrong :) 

Samuel enjoyed the bounce house, but was also happy to hop in his absolute favorite thing... one of his favorite words, too... swing!

Time for cake!

Happy Birthday to you, Happy Birthday to you...

...Happy Birthday Olivia, George, and Samuel...

...Happy Birthday to you!

Look at my babies surrounded by their friends :)  LOVE IT!

And... back to bouncing!  

Until they just couldn't handle it anymore - ha ha!

These are whooped kiddos :)

Except this guy!  I swear he spends nap time making up for lost time (awake!).