Day 8

I never know how God will reveal himself. Sometimes I struggle to find Him. But today He made himself known.  My pity party is over.

Swallow study complete.

Brave Gabi sat in a boosted up chair with straps and the radiologist and the SLP positioned her and the camera at the IMG_7878 (1)perfect angle so the video was recording her mouth down to her stomach.  They gave Gabi 4 types of liquids to drink.  From thin as water to thick as pudding.  All mixed with barium.

Good news- she did great behaviorily.
Bad news- Preliminary results were not good. She is aspirating thin liquids. Both the doc and the SLP wanted to review the images and then give me a full result but, of course, the machines were down.  We will get full results tomorrow.

But according to SLP, she is aspirating thin liquids but coughing to get enough of the liquid out of the airway back to the esophagus.  It is her self-protection. She never coughed  enough for us to be alarmed.  And of course, I feel terrible that we didn’t know this was happennig. Looking back, yes she did cough but just a small, almost kind of habitual cough. Oh the ugly guilt and the bitter resentment set in today. But I was also so grateful that the SLP ordered this test and we now have this information. We can now move forward with the best possible way to help our little girl.

Treatment is to thicken all the liquids with a thickening agent.  It turns the liquid into a nectar type of thickness. She might also start a new treatment called Vital Stim Therapy.FullSizeRender

The VitalStim® Therapy System involves the administration of small, electrical impulses to the swallowing muscles in the throat through electrodes attached to the skin overlaying the musculature.

And now we get to add a pulmonologist to our list of specialists! Super psyched about that.

Her tantrums are still happening for every single therapy. But I am not backing down.  She is testing me and I cannot give in to this.  One of my most inspirational friends who is  one of the best parents I know and happens to be a nurse agrees with me to not give in.

It was a very trying day.  We still don’t have answers for our goals for the program..One of those days that you wonder where God is.

I’ll tell you where I found Him. Friends from long ago, friends for life and new friends are reaching out to me because of this blog and my openness. It’s not easy for me to open up like this.  I feel quite silly but it is my therapy and I also don’t want to ever forget these moments. But because I open up, we have received so many blessings.  I am so thankful for the genuine friendships that I have… that is where God is.

Science experiments in the playroom tonight

Science experiments in the playroom tonight

Often times, here, I just want to sit in our room and read and sit with Gabi by myself.  But I know that every person here, the staff and the patients here are an opportunity.

An opportunity for love.

We went for our thousandth walk through the hallways tonight and met a new girl here.

13 years old. brain cancer. chemo. brain surgery.  wheelchair. lost all function on her right side. And SHE told Gabi how brave she thought she was.  There’s God again. Speaking through a 13 year old girl.

And you know where else I find God? My husband.  My teammate. The one I don’t thank enough. The one that drives me crazy but the one I can’t live without.  The one that I take for granted.

Ya, I’m over my pity party.

Much love,
Teri

 

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