The Lighter Side of a G-Tube

"Would you like some ice cream?"

The answer to that question will always be "Yes!" from most kids. But not my tubie kid. I get all the free ice cream from CFA, as she will take one lick and decide she doesn't like it. 

Bonus!

"Here's your sprinkle cookie."

And 2 small bites later, I get the rest of the delicious sprinkle cookie.

Double bonus!

At our weekly lunch outings at Subway, we buy 2 meals. 2 sodas to split, 1 bag of chips for the kids to split and then 3 cookies for the 4 of us to split? Nope. My tubie doesn't eat cookies, so I get to pick out a white chocolate/macadamia nut cookie. It's delicious and I don't feel guilty.

Anymore.

I felt guilty a few months ago: I told her to eat her cookie at said Subway. She scarfed it down on a dare. 

She ended up puking it up. Like from the table all-the-way to the bathroom. Sorry didn't quite cover it. And she felt super embarrassed about it. :(

Now I don't push her, and don't let others push her to eat MORE.

Am I completely happy that she is hooked up to a feeding pump and bag every night?

Well, yes, thank you for asking.

I am now.

She gets most of her calories at night, and we don't have to worry about whether or not she eats enough. She has grown 2 whole sizes in clothing in 3 months, she has "more meat on her bones," and now she looks closer to being the spunky 5-year-old she is.

She also has so much more energy now. She can swim for hours in the pool, trying to touch the bottom and teaching herself to swim. She can walk to and from the ball-fields from the parking lots multiple times a week. She can run around and we're not praying (as much) that she won't fall and get a concussion.

Don't get me wrong...you haven't heard from me until now because tube feeding is tough. I almost threw in the towel when she lost 1/2 lb after a month of feedings! (Oh the anger!)

But we persevered and she put up with us. She (and I mean I) even endured her tube being pulled out while in the middle of a feeding. 

Here's what happened: She was playing outside while wearing her cute Elsa & Anna backpack I sewed into a tubie backpack (Thank you Pinterest!), when someone pulled something out of her hands while playing a game and they accidentally pulled her whole tube out! She freaked. I freaked. To the ER we went. 

Next time, she'll be ok and I'll be a big girl and just put it back in myself.

So yes, it can very much suck.

But at least she is growing and I get to eat all that yummy stuff!

The Good, The Bad, and The Ugly

Pre-surgery: Not excited...been here before, she was NOT having any of it!

Let’s start with the Ugly…

We’ve had some really awful days these past few months. Anxious mama, fussy kiddos, lots of jealousy, and twinge of pain—due to surgery and also those of the heart.

I had an over-the-top awful day 2 months ago. Just one of those days where everything goes wrong, like EVERYTHING!!! Stress is through the roof, my anxiety and depression were in full swing, and I couldn’t stand my own skin. (My poor kiddos…at least they got to watch a lot of movies and tv that day!)

 I finally decided to just turn on my computer and start Google-ing “Rigid Spine.” You know, just because I do this a few times a month…just to see if I can make contact. (I would liken it to NASA putting out messages into space in different radio frequencies in hopes of making contact with aliens.) So, at the bottom of the page in underlined blue were the words: rigid spine the view.

I couldn’t click fast enough.

Don’t worry, here comes the Good…

Suddenly, I had made contact. (Imagine me in that part when Jodi Foster is walking on the beach and makes contact with aliens in the movie “Contact,” so out of this world!)

Here was a mom, Mindy Scheier, who created an amazing non-profit company called Runway of Dreams, because her son Oliver has rigid spine.

1st night = rough night

I know!!! I got to see her, him, the whole family right on my computer. And I bawled my eyes out. For a very long time, while smiling. God is so good.

I came to Him, weak, totally spent; and He met me there and gave me this website which led to contact. I can’t EVEN. This moment was huge. It was like Oprah pointing at me and saying, “AND YOU GET A LIFE CHANGING MOMENT!”

I immediately emailed her with the subject line: “My daughter has rigid spine too.” Then, as I started writing my email, I realized I should probably send her my blog. So I did. She emailed me and we’ve been in contact via phone and emails. Our stories are eerily similar. 

She is amazing! She is making a difference with ALL differently-abled people of the WORLD! Truly, I am amazed and in awe. And I want to help. Please help her vision to help all differently-abled children and adults find and purchase affordable, adaptive clothing world-wide. Click here,please.

And now for the Bad…

Bad Girls, that is! These are Bad Girls who do good. (I know that’s not proper English, but you’re just going to have to go with it!) My Aunt and her friends are the Bad Girls of Sarasota. They sweetly chose Josslyn to be the center of their Sarasota Christmas Parade float and also to donate to our family this Christmas.

Playing Crazy 8s with her new cards and card holder! Day 2

I was afraid Josslyn would not be able to make it, but once she heard she was going to be riding on Uncle Tom & Aunt Kathy’s truck in the parade (with her as the center of attention!) she was up and out of bed! Yes, she is totally my daughter.

Josslyn and I went down to Sarasota ahead of the rest of our family, and she was stoked to help decorate the float and spend time with the Lauras, Shelly, Sharyl, Carol, Jessica, Patti, Karen, Gerard, Uncle Tom and Aunt Kathy! I can’t express how this float helped Joss to focus on something fun instead of the pain I know she was having. 

Laura Claire and Dylan also walked the whole parade carrying the banner in front of truck with Daddy helping. We were all so impressed that they made it the whole way! These kids are the best big brother and sister Josslyn could ever ask for!

And so because of all of our amazing family and friends, we had a fantastic Holiday season! Surgeries and all.

Thanks Grandma Patty for the Elf PJs!!!

Love these ladies!

Here's the whole crew!

Joss & Ms. Patti

Gator...

Chomp!

Keith and Joel

Bad Girls

Behind the scenes...sewing with Aunt Kathy