Samuel passed his test!

So much has happened with our family in the last year - so many posts I wish I would have written - but I just can't let this one go by... it could be a game changer :)

Samuel had a modified barium swallow study this past week... and he PASSED!!!  In other words, this test showed that he has a functional swallow!  Not perfect, a bit of residue left at the back of the tongue, but very functional.  This is huge.

Samuel has had a few of these tests in his life - three I think - but he's never been advanced enough in his eating to even swallow the barium fluid.  No barium = no results.  But this time, it worked, and results were good!

Background: Samuel is still 100% gtube fed.  Many factors play into this, including overcoming severe oral aversions from birth due to so many tubes and medical equipment.  In addition, since he's never eaten, his mouth doesn't really know what to do with food... how to chew, why to chew, how to move food around, etc.

We've been able to encourage him to eat, but with extreme caution.  Without a functional swallow, there's a very good chance Samuel would aspirate and fluid would enter his lungs (it would literally go down the wrong tube, ha!).  As you can imagine, for a very lung-impaired kiddo, this was terrifying.  There's also the paralyzed vocal chord, which doesn't necessarily play into why he hasn't eaten before, but it's a huge risk when eating.  Even if someone is a good eater, and understands the mechanics of it, and has the desire to eat, a paralyzed vocal chord can cause functional issues.

So what comes next... a new approach!  We have come a long way with the oral sensitivities, but there is still much to do.  In addition, he still needs to learn a few basic skills such as opening your mouth when presented a spoon, and lowering your tongue to accept the spoon are current goals.  Samuel has been licking lots of foods, every once in a while will accept a tiny amount of liquid, and sometimes he eats a pea-sized bite of yogurt.  For an actual feeding plan, we'll be starting from the basics - level 1 baby foods and liquids.  He'll still get a plate of whatever the other kids are having, just as he has for some time now, but the strong encouragement to eat will be more of the level 1 and liquids.  Samuel has a lot of learning to do...

Eating needs to be fun and something he wants to do!  At the same time, even when Samuel started expressing a small interest in foods, without knowing if he had a functional swallow we could only do so much.  And then of course you add in that Samuel doesn't understand the connection between hunger and eating - why would he?!  Without knowing Samuel wouldn't aspirate, we certainly weren't going to hold the gtube feeds and hope he ate more!

It's still a very slow process, but we are just thrilled to be moving on to a new journey!  Let's eat!

A few pics that have nothing to do with the post... expect they're all about food :)

Sneaking a cookie :) 

You can always tell when Samuel's done this because he leaves behind the licked evidence, ha!  

Maybe soon he'll actually eat the cookie!

Yes, that's a green pepper... another item Samuel stole off the counter.

He ran around the house biting it and saying "apple" - this boy needs to eat! 

George's first bite of sushi a new months back :)  California roll, he was so proud.

Another proud George moment, he ate an entire grilled zucchini... 

this after he told me he wouldn't try it, yes!

I don't seem to have any recent pics of Olivia eating, 

but I did have some of Olivia with food - that counts, right?!

Above, making a pizza at the Children's Museum in Phoenix :)

This time she's inspecting the food :)  

Olivia and a classmate look at coconut under the microscope in their science lab, too cute!

Gotcha!

Ha ha!  I love that her friend Caitlyn brings out this side of Olivia :)  

My girly-girl picking up a horseshoe crab earlier today, hooray!

No better way to bring back the blog than with a photo that tells its own story!  My next goal is new posts going forward, and to fill in some of the holes from the last many months... promise, mom :)

Thank you Barbara Jeans!

This post could also be entitled "How Time Flies"... but that felt too nondescript :)

Back in the fall of 2009, when Samuel was still very sick and we were still very cautious about taking George and Olivia out in public, our friends Kristen and Josh helped to make sure we got out of the house at least once per week (work and visits to the hospital not included).  Our tradition became Sunday brunch at a local Barbara Jeans restaurant, yum!

The staff was wonderful and got to know our story, and it was just a great time for us to feel somewhat normal during a very stressful time in our lives...

Picture from November, '09, Olivia and George with Kristen and Josh - the tradition was in full swing!

When Samuel came home, we kept up the tradition for a while with take-out... in fact, on one particularly stressful Sunday morning when we had to put Samuel on a helicopter back to the hospital, my take-out breakfast was reheated for me as I packed a to-go bag and got ready to get on the road (parents can't fly with the kids, bummer)... unfortunately we were all a little frazzled and the styrofoam take out box got reheated too, ha!

Of course, eventually the tradition went away... then I saw in the paper this week that Barbara Jeans was closing its doors.  We had to make one last breakfast trip!

As we sat and ate, we reminisced about the early days of our tradition, the craziness that was our life during those days, how far we've come, how wonderful it was to have Samuel with us... and of course the kids wanted to know all about themselves during those early trips - what they ate, where they sat, even what they wore.  Although it's strange, even though that was four years ago, the four adults haven't aged a bit ;)

How funny, I thought this would be a 3-picture and 2-line post... it's pretty awesome the memories that seemingly simple things like breakfast can carry.

Marching this Saturday!

So much to post, so little time... how many times have I said that in the last few months?!  Sheesh, that excuse is getting old.  Moving on...

This Saturday, April 20th, are walking for the fourth year in the March of Dimes March for Babies!  We would be absolutely honored if you are able to support our fundraising efforts and/or walk with us!  The continued support from friends and family for this event has been incredible, and we are excited to be taking part in the walk this weekend.   

It's hard to believe that in only four years we've gone from only being able to take George and Olivia to the walk and now to all three probably walking the 3 miles on their own two feet :)  Our first year Samuel was still in the hospital, the second year he was still trached and using the ventilator, the third year he joined us - hooray, and now here we are...

It's also hard to believe we're moving into a new phase with Samuel... it's been one year (3/19/2012) since his last helicopter trip, which means one year since a medical emergency.  (That was one of the March milestones we've been waiting to celebrate!) His doctors were right, measuring success by weeks and months, rather that day by day, really shows how far we've come!  

As Samuel has begun to excel at living, and we take on new challenges with development, I can't forget the places from which we have come.  I can't forget how lucky we are to have our three children... how lucky we are to hug them every morning... how lucky we are that two of our three 28-week preemies are growing and developing right along with their peers... and how lucky we are that the sickest of our kiddos is home, and happy, and growing into a little boy right before our eyes. 

We are late getting started, between new docs and new therapies it's been a busy few months, but we are planning to spend April 20th walking and just being thankful :)    

No new video this year, but I click on the old ones for inspiration and hope you'll take a minute to do the same :)  Click here for the story of us from 2012!  Our NICU story is still posted, too... click here for that one. 

Our eyes have been opened and I just can't forget.  I can still close my eyes and remember everything about that NICU; the good, the bad, the terrifying, and the truly miraculous.  I can also remember the stories of the families around us, and am forever changed.  Babies, and their families, need the March of Dimes research.

If you are able to help in any of the following ways, it would be hugely appreciated!

• Make a donation to our walk :)  www.marchforbabies.org/byrnebabies
• Walk with us!  Regardless of a donation, join us on April 20th!  It's at 9am from the skate park to the Sands.
• Forward along our story... by email, by facebook, by whatever, to more people who may be interested in supporting the March of Dimes.

Thank you for considering a gift... every dollar really does bring the March of Dimes closer to ensuring that one day, all babies will be born healthy.

Thank you... for everything :)
 
Bethany, David, and of course Olivia, George, and Samuel

Happy (late) Birthdays!

I'm wondering at what point I will get caught up and not have to mention the word "late" in a post... ha!  Anyway, moving on...

The kids had a wonderful birthday!  Hard to believe they turned FOUR years old nearly two months ago (on January 28th)!!  They think they are so big, which I just love.  In fact, about two weeks before their birthday they started talking about going to kindergarten when they turned five - hold on just a second there, PreK first please.  For their birthday we had another good ole' fashioned backyard party and wore these kiddos out! Once again the friends from George and Olivia's school came, and this was the first birthday Samuel has been at a local school (he was able to start school in Beaufort the day after his 3rd birthday) so a few of his friends from school came, too :)  It was awesome!

AND, DB had a big one, too... the big FOUR-ZERO!  Another one that is hard to believe... which led to the theme of his party, "I'm a Big Kid Now!"  Perfect!  Our garage is a smorgasbord of bikes, skateboards, surfboards, a bow and arrow, bb guns, kites, and who knows what else... and those are just the adult-size toys.  Even though I give him a hard time sometimes about all that stuff, it's also one of the reasons I fell in love with him :)  For the party everyone dressed like a kid... some like little kids, some middle school, some 80's and 90's high school... it was hysterical!  Our friends the Blakes were awesome to host it!  Plus, that meant our kids slept in their own beds that night - that was huge!!

 Excellent illustration... and used for the invitation :)

Four-year old birthday girl and boys below...

Couldn't resist a few more fun pics from the party...

 Aunt Brooke, she still loves her motorcycle :)

Look friends are here!

 He may not be eating it, but had to capture on film that Samuel was testing out the snacks :)

At one point I did have to redirect him... picking up a goldfish, licking it, and throwing it on the ground should not be repeated more than 100 times.  Ha!

 We loved having a little help from our friends to blow out the candles :)

 This is one of Samuel's BFF's... and we were so glad she made it!  He doesn't show much emotion, but when she walked in, Samuel made a bee-line for her :)  I love their little conversation... which pretty much consisted of him repeating her name in awe of seeing her at his house... she is so patient with him.

Lots of hugs as folks left the party - the kids were so excited to have everyone over :)

 I swear Olivia did leave the jump castle at some point...

 Best family pic of the day... maybe we should have taken it earlier in the day :)

Outside is the place for me!

Just a fun trip to the beach, couldn't resist sharing the photos :)

 Samuel and DB, best seat in the house!

 George "taking a rest"... for approximately .5 seconds.

Check it out, I'm climbing a tree!

 I just want to run!!!

Btw, I have absolutely no idea how Samuel stays upright when he runs, he's got the arms and head going in opposite directions, it's seriously impressive.

 George "taking another rest"... this one a bit longer because it was hysterical :)

The good news is, with that hat we'll never loose her in the brush, ha!

Happy New Year... I mean, February?!

Really?!  It's February?!  And February is half over, you don't say!  Oh my goodness...

Happy Birthday post from January to come, so many cute pics to share!  For now, I guess I'll just start with an update... and try not to get terribly long winded :)

Since birth order tends to be how I call their names out loud, I'll go with that.  Funny since birth order spans all of two minutes :)

Olivia... is my dancing princess!  Huge thanks to a gift from a friend, she started dance class back at the end of November and is in heaven. I have to admit, I was a bit worried... she was SO excited and I was just hoping she didn't get my (lack of) rhythm.  We're in luck!  Plus, I'm not sure I've ever seen her so focused for any other hour of her day :)  Her book choices have also almost entirely switched to those about ballerinas, although she still enjoys princess books, too.

Olivia and a few of her classmates at school headed to dance class.

George... is one of the funniest kids I've ever met :)  That smile can charm the pants off of anyone.  Good thing because he's been a little squirrely lately, his intelligence seems to be maturing faster than his emotions... but a magical fish that he can squeeze anytime he gets frustrated has seemed to reel in any negative side of the squirreliness.  He gets adult humor and studies everything with such concentration.  Maybe that's why he's such an impressive driver - the Jeeps I posed about back in December are still a favorite and George is an incredible driver!

George during a January beach trip.

Samuel... oh Samuel, where to begin... for the most part, things are GREAT!  We have another milestone coming up, but I'm a little nervous to put it in writing, so I guess at the very least I'll have to post again towards the end of March :)  Samuel's health is excellent!!  This is huge - all of his meds are PRN!  He's been on "as needed" status since the end of November... for respiratory meds, too!  This is just unbelievable, and thrilling, and unbelievable, and amazing.  I'm so proud of my strong boy!

Samuel walking Belle - a new favorite activity... although Scout is actually much better about not dragging my boy into the bushes!  Ha!

Since there's more to Samuel than just his health, another few things :)  He is also doing really well with all of his therapies and continues to love school.  His sense of humor is blossoming as well, and his interests seem to be expanding and his concentration getting a bit longer.  Samuel has always loved to be outside, and still does... no matter the weather, the time of day, the location, or even the bugs... if he's outside, he's smiling.

Back to the medical, Samuel also got another diagnosis in January, of Autism.  Hmmm, for about two weeks I cried every time I said the word, but haven't done that much since then until now... what is it about putting things in writing that can make them real all over again.  We're in full gear trying to learn about Autism and new therapies, finding new therapists, and spending many hours trying to figure out how to pay for it all (ugh, it's the worst!).  More on this later, there's much to say, but the bottom line is that while it's difficult to hear a diagnosis, especially one that doesn't have a guaranteed cure, it's great to know there is more to learn and to try to continue to help Samuel develop and continue to grow.