Tuesday, March 16, 2010

8 months!
(knock on wood)

Today marks EIGHT MONTHS since KayTar's last episode.

(knock on wood)

It is amazing, miraculous, wonderful. They used to torment her every TWO WEEKS. She would have had 16 in this time frame, instead she has had zero. We never thought they would stop.

I still think that the trigger is nutritional/metabolic in nature, that something isn't functioning quite right in the intricate processes of catabolism and anabolism, and that her steady intake of Pediasure is responsible for many of the positive changes we've seen in her health and development, including the decrease in episodes. The last time she was very sick, we took her to the hospital to correct her hypoglycemia and fluid imbalance sooner than we have in the past and I think that kept her from having an episode in a situation when she typically would have. Regardless of the reasons, I'm just glad they have been absent for so long and hope they continue to stay far away from our girl.

This year it is easy to get all of her Pediasures in. Every morning she gets 4 ounces of Pediasure via her g-tube before school, then we send her to school with 8 ounces in a sippy cup. She drinks it during breakfast and snack time at school and when she gets home, she finishes whatever is left and I make her a second cup. We try to get in one more in the evening. Usually by bedtime she has had 2.5-3.5 cans of Pediasure each day, along with food. Next year, in full day Kinder, we aren't sure how we will accomplish the same level of intake. It takes MANY, MANY reminders to get her to drink her Pediasure. If things are busy, she gets distracted. We tube feed her when she doesn't feel like drinking it by mouth. Next year in Kindergarten, she will be busy all the time and be in school full day and it will be a different ballgame. We don't know if she will need to go to the nurse for a full tube feeding at midday or if we need to invest in a pump for her to wear during the day to give her steady amounts of Pediasure throughout the day. We'll figure it out, I'm sure.

We're just glad to know exactly how important it is to her overall well-being, and thankful for her g-tube and the ability it gives us to ensure that she gets what she needs every day. Most of all, we're thankful for EIGHT whole months of peace for our sweet girl...she sure deserves it.


Becca said...

Hooray!! So great to read this!

Magpie said...

It's amazing. Continued good health to her.

ewe are here said...

Brilliant, just brilliant.

And I really, really hope that come July 16th you'll be celebrating a year of peace.

InTheFastLane said...

I didn't realize it had been that long! Wow! And kindergarten...are you ready?

alejna said...

This is so great. Hurray for the tube! Hurray for KayTar!

painted maypole said...



Anonymous said...

EXCELLENT! Love that G-Tube!

oleyfriends said...

I found your blog. What a great posting. I'm so glad things are going well for you.

If you have questions about tube feeding or want to talk to other parents with tube fed children, check out the Oley Foundation at www.oley.org. We offer lots of great services, all free of charge. Click on the "New to Oley" button for an overview.

There are light weight pumps and mini-sized backpacks for kids who need tube feeds while they are active. Call me and we can chat about this.

Best of luck!

Roslyn Dahl
Oley Foundation Staff
(800) 776-OLEY

Gwen said...

8 months! Wow. That's so great.

moplans said...

Woot!! look at that smile!

I am so happy for you all, and so glad the tube turned out to be so very, very worthwhile.

(would you believe I didn't even make it to the end of the first paragraph before I thought 'that's from the tube!")

~aj~ said...

It's just amazing when you think about where things were a year ago, when there were far more questions than answers and you wondered if the rest of her life would be plagued with constant episodes. And look at her now!!! It just blows my mind!