Wednesday, September 25, 2013

Pyro Fix

We used to make a fire in our fire pit on a somewhat regular basis before Abby was born.  Caleb loved roasting marshmallows, and there's something calming about sitting around a fire and just chilling out.  

Then...Abby came along...and along with Abby came a trach, oxygen tanks, and a whole lot of respiratory issues that would be exacerbated by smoke.  So...no fire pit for a few years.

A few weeks ago, I realized that we could probably make it happen!  She hasn't used oxygen for a year and a half, she's been trach-free for a year, and her respiratory status has been awesome!  It took a few weeks to find a good time to do it, but I took a few hours out of my presentation preparations and got everything set up.

Oh. My. Goodness.  They LOVED it!!!


Abby thoroughly enjoyed roasting marshmallows, but I had to hold her back because she kept wanting to get "just a lil bit closer" to the fire with her stick.  Uh-uh!  No ER visits here, girlfriend!!

Caleb was so proud of his fire-building skills!




I think Caleb may have liked the s'mores the best...




Even Abby took a little taste of a s'more!  She liked the marshmallow.


It was every bit as relaxing and laid-back as I'd hoped it would be.  And Abby loved it as much as (if not more than) I thought she would.


We will definitely be doing this again.  Soon.  







Tuesday, September 24, 2013

Amazing News!!!

I'm typing this on the iPad, so it's going to be brief.  But I absolutely had to post this tonight.

Abby is tube free!!!!!!

We met with her feeding GI today, who agreed that she was ready--so it's gone!  The hole has already almost completely closed after just 6 hours.  It's amazing how the body just takes over.

We were pretty much expecting the doctor to say that he wanted to wait until spring, so we were astonished!

This is the very first time Abby has ever been technology-free.   Ever.  I would be lying if I said I didn't shed a few happy tears.  She's come a long way, Baby!  God is so good.

Monday, September 23, 2013

Starlight Night

I won't pretend that Caleb doesn't often get the shaft when it comes to having a "normal" life.  It's getting closer than it was 2 years ago, but he still lives in a world of doctors, hospitals, and therapies.  There aren't many six year olds who understand trach care, can spout off a list of diagnoses, and can hook up and run a feeding pump.  It's a big responsibility being Abby's Big Brother.  

But once in a while, because of Starlight, our family can get together with other families who "get" our life.  And best of all, we can have some fun!!

Last Wednesday was one of those nights.  Matt couldn't come because of youth group, so we brought Sara with us!

We went to a high school in our general area, whose field hockey team had chosen Starlight to be their charity this season.  Instead of just raising some money for the charity, the team decided to take it a step farther and have a Starlight Night.  They invited families to the game, but it didn't stop there!

Everybody got specially-made shirts signed by the team.  

The kids got to go out on the field, have their names announced with team members, and run through the team tunnel before the game.  



During halftime, we all went out on the field again and the kids took shots in the goal.  




We thought they were just borrowing balls and sticks, but the kids were thrilled to find out that they got to keep them!!!  


JV players sat with the families and played with the kids, and everyone was SO nice and understanding!!  The kids even enjoyed watching the game!


The field hockey team really went out of their way to make the kids feel special and loved.  We all had a great time!!  Thank you, Bulldog Field Hockey, for really going above and beyond.  As always, we love Starlight!!



Sunday, September 22, 2013

I'm Back! I'm Back! I'm Back!

My presentation went really well, and we got some great feedback.  It just about killed me and I think I put in a total of 18 extra hours (in addition to work hours) in the last week, but it was worth it!

Sadly, my computer crashed Tuesday night (AFTER I finished my work on my presentation, thankfully!)  and I haven't had anything to use but my phone.  It's kinda hard to write a blog post on your phone!

My laptop is still in the process of being fixed, but Matt is hauling his work laptop back and forth so that we have something to use.

I did manage to take a break from my work long enough to get in on a little of this action, though!  :)


Thursday, September 12, 2013

No Time for Blogging!!

The little ole blog is going to be a bit quiet over the next week or so.  Why, you ask?  Well, my coworker and I have a tremendous opportunity to do a SIOP (Sheltered Instruction Observation Protocol) presentation for a whole bunch of teachers in our county...and it's next week...and we just found out yesterday.  Because it's a big deal for us to get to do this and has the potential to get the word out about the program we are presenting (and love, and believe in!), we need to do it right.  Which means that I will eat, sleep, and breathe SIOP for the next week.  But it will all be worth it if we can spread the word about the awesomeness of the program.

So here's an update to catch you up and tide you over:

Abby loves school.  She isn't telling us too much about it, but I consistently get that she plays with Anna and gets a stamp from Ms. Susan.  Her Friday Mom's Morning Out program is awesome too, and I love that she has the same teachers and can hopefully be the "big girl" in the class this year.  She's getting tested next week in speech and gross motor development to see how she is progressing.  I will be interested to see the results of the testing.

Caleb loves school too!  He was ecstatic to get "off the charts" for the school's behavior program last week.  He even got a fancy rainbow pencil to celebrate the milestone.  He is enjoying the kids in his class and seems to be adjusting well.  Handwriting (and writing in general) is the hardest for him, but he's doing a great job of working a little each night on it.  He went to a Lego event at the library tonight and was in heaven!!  There were 30 kids who were equally, if not more, enthralled with Legos.  And there were 5 huge bins of Legos.  What more could a boy want?!

Chloe is adjusting well to our family.  We had some potty issues for a while there, but we realized that she had an undetected parasite (we'd had her checked twice, but these are sometimes hard to catch).  Once we got that cleared up, we really haven't had issues...thank goodness!  We learned that Chloe can clear 4 feet without a running start when we tried to block her into the laundry room with a baby gate and some kitchen chairs.  Back in the crate she stays while we're gone!  Seriously though, we really love her.  Caleb and Abby absolutely adore her and Caleb thanks God every night for sending her to us.  She has a very gentle spirit and loves the kids...even when they climb all over her!

See you in a week!!!

Wednesday, September 11, 2013

Friday, September 6, 2013

52 Lists: Things That Feel Like Home

*  warm chocolate chip cookies

*  orange juice and pretzels (we used to eat them at my grandmother's house!)

*  tobacco fields (hey, I'm from CC!)

*  roads lined with yellow, red, and orange leaves in the fall

*  a wiggly boxer dog greeting when I walk in the door

* the comfort of my own bed

What feels like home to you?

Wednesday, September 4, 2013

Abby's First Day of School

Abby had a wonderful first day of preschool!  She went right into class and began playing with Anna without any hesitation.  They were playing dress up (without masks, of course!!) when I left the room.

I was surprisingly completely fine!  I didn't even shed a tear because I was just too proud of her to be sad that she was so grown up.  It also helped that I left there to volunteer at Caleb's school, so I was kept busy while she was gone!

Enjoy a few of her first day of school pictures!  (Side note:  Abby was not very cooperative this morning!  I do hope this is not to mean she's going to start acting like Caleb does when the camera is out!)







Aren't they the cutest set of "twins" you've ever seen?!


Toughness and Truth

Not sure if you've noticed, but it's been a little quiet over here on the blog recently.  When I have blogged, it hasn't been so emotional.  Some of that has just been the busy-ness of the time of year and the amount of time I can devote to blogging, but a fair amount has also been that I have really been trying to internalize what "having the gene" means...and I wasn't quite ready to share my heart again with the world.

Guilt washed over me when Abby got sick with a virus and the usual concern over her weight and respiratory status during the illness begins.  I caused this.  The fear of the future began anew when we listened to the thoracic specialists talk about potential rib surgeries.  I caused this.  Teaching a new group of teachers all about Abby's medical precautions caused the butterflies in my stomach to flutter again at the thought of not being there to keep an eye on her.  I caused this.

In my search to begin to understand why God gave me the gene that caused Abby to have CCMS, I wanted to share with you a few verses I found from John chapter 9:

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned,this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

I heard these verses on our local Christian radio station on a particularly difficult night.  They were exactly what I needed to hear.  Abby has CCMS so that others can see the works of God in her!  What an incredible opportunity, when I choose look at it that way.

Just like everything else in this journey, joy has to be my choice.  I can choose to ask, "Why me?" and blame myself for giving Abby CCMS, or I can choose to thank God for entrusting me with the awesome responsibility of being Abby's momma.  


Tuesday, September 3, 2013

Nostalgia

Tomorrow is Abby's first day of preschool.  I never, in a million years, would have been believed two years ago that she would be going to preschool on her own, trach-free, without an assistant!  God has amazed me time and time again with this girl.

We are supposed to send in a baby picture tomorrow.  Ours aren't exactly the norm, but nothing about Abby is!  I've been taking a little walk down memory lane tonight and looking at some early photos of my sweet girl!


This was the very first time I ever held her.  I will never forget that moment.


This is probably my favorite early picture of her.  Look at the determination in those dark eyes of hers.  She was a fighter from the start!




What a long way she has come!  I will definitely post some first day of school pictures, so stay tuned!