Category Archives: You are Not Alone

Messages that encourage.

Just Keep Swimming

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Matthew at 3 watching “Finding Nemo”

What do you do when you’ve done all that you can and your tubie needs a clean out anyway? All of the blending and adding and removing and…SO MUCH GREEN STUFF! Well… You just keep swimming, right? That’s what Dori did. Yes, finding Nemo is one of Matt’s favorite movies to this day even though He’s now 15. So amid the overwhelming feeling of defeat,exhaustion worry and fear I hear that song ringing in my head. Oh how I wish it were that easy. Matt has had GI troubles since he was 8 months old. I’ve been at this for 15 years. Shouldn’t I be use to the ups and downs of this tubie roller coaster by now?

But, as we all know, that is not the case. Putting up with the pain and discomfort or watching someone you love go through it is never easy.  So whether you are a tubie yourself or the caregiver of a tubie, a newbie tubie or a veteran tubie, please know that you are not alone. Find a support group if you are not in one already. They are indispensable! Where else can you go and talk about poop and vomit as if it were the weather. We get each other. No need to explain, defend or excuse. Just take a breath and…You guessed it! JUST KEEP SWIMMING!

Baby Steps

Yes, even veteran tubie moms can struggle from time to time.  Matthew can’t handle large volumes because of his slow emptying issues. He is a growing teenage boy who is now more active than he’s ever been in his life. It has been quite a challenge getting him the additional calories he needs without increasing volume. Recently I had to add another carton of formula to his daily routing because his weight was dropping. I have been hesitant to try coconut oil and/or milk because of extreme food allergies in the family. For years I have been making his oatmeal with formula. Helping a transitioning little one has given me the courage to try adding 1/2 tsp of organic coconut oil in his immune system cocktail (given through the g-tube) to see how he reacts. It’s been 2 days and so far so good. If he continues to show no allergic reaction I will make his next batch with fresh coconut milk instead!