Saturday, June 29, 2013

"It's something on Kerstin's stomach!"

As you all are well aware, Kerstin had her g-tube place back in March.  While she was in the hospital post surgery, I sent a text of her stomach before and after to our family ( it's also the one I included in a previous post ). So,  I have a very curious niece, that's 3 going on 33!  Her mom had told me a few times that  my niece would get her cell to look at Kerstin's picture every night and say that the doctor's had put "that" in Kerstin's stomach so that she could get her food.  Clearly, her mom really explained things to her, in an age appropriate way.  It became clear to me the other day that she either didn't believe her mom, or she needed further explanation, or that she finally got to see Kerstin's stomach in person, and thought she would get the full story from me, the mom.

Normally, when I give Kerstin her boluses, I do it discretely, since this is a personal and intimate process with me either having to lift her dress or her shirt to get to the 'button'.  Relaxing at home during summer break, enjoying a day at home with her cousins...Kerstin managed to pull her shirt up, exposing the port.
My niece being, curious little person, saw this and came to me and said, "it's something on Kerstin's stomach!"  I explained to her that it was Kerstin's "other belly button" and that is how she eats now. She wanted to know why because Kerstin has teeth too, like her.  Again, I explained, that she does, but she could no longer eat by mouth and that her food went directly to her stomach.  She smiled and sang my little feeding song that I sing to Kerstin at the start of her boluses: "It's going down, down, down, into your tummy, tummy, tummy!"

Yes!  Children are curious, they want to know what's going on in the world around them.  We have to be ready and willing to explain to them the things they are asking, age appropriate, of course. I believe that if we gently explain to our little ones that we all coexist here and that we all have different abilities, things would be better for all. Who knows?  Maybe then we won't have so many children staring at children and adults because they may be in a wheelchair, walk with a limp, wear glasses, talk a little differently, or have to eat from a feeding tube!

More to come...

Sunday, June 16, 2013

The weight is...

UP!! Thankfully!!  My little angel was weighed again at her follow up g-tube appointment on June 3, 2013.  At that appointment she was up 9 lbs from March 30.

June 3:  We were at Children's of Alabama once again, meaning we've made the 123 mile one way trip for the 9th time since February 12.  This is the day mom gets more hands on training on her tube, the port, checking the water in the balloon, how to change it, what to do if it happens to come out...
I was a bit nervous about seeing her belly without the port, I'm not going to lie, it was a bit uncomfortable seeing her lying there with this little hole in her stomach.  ( No pictures, I couldn't this go round )  Now, every two weeks, I need to check the balloon to make sure it has 5 mL water in it. If it doesn't I need to add water to it.

Though, I'm very thankful for the weight gain, we've still been having issues with feedings and at times, her keeping so much of the formula in/down.  We are striving  and will press through those, along with the sleep deprivation I'm having because of my little one being awake most nights at 3 a.m. Just one more thing we will have to press through.

More to come...