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Archive for the ‘Kiddos’ Category

August 22-29 is Digestive Tract Paralysis (DTP) Awareness Week.

Because I suffer from DTP, I thought I’d share a little about DTP, my story, and the stories of some friends.

I have what’s called “gastroparesis.” That’s gastro– (meaning stomach) and –paresis (meaning partial paralysis). I also have intestinal dysmotility which has resulted in many episodes of intestinal psuedo-obstruction. And that’s intestinal (meaning relating to the small intestines and colon), pseudo- (meaning false), and obstruction (a blockage). Both issues are common with many types of mito.

As a friend with Crohn’s disease has said about GI-tract disorders:

“What are those?” you ask. Butt diseases. Nobody talks about them because butts are embarrassing.

But these are real and serious conditions because the GI (gastrointestinal) system processes your food (which contributes to how well your entire body functions), GI disorders are very serious. They are something that people should talk about because without vital nutrition, your body deteriorates rapidly. There are, however, some medical “solutions” to poor nutrition. Although doctors initially try treatment with medication and diet, they may eventually resort to using TPN (total parenteral nutrition), which is essentially IV nutrition, and/or a GJ (Gastrojejunal) tube, a tube that directly feeds into the small bowel, bypassing the stomach.

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Today, Keith and I went in to Children’s Hospital Boston to visit some friends. The main purpose of our visit was to watch over Sasha while her parents took her brother to an appointment with the metabolism doctor in another wing of the hospital. As you may or may not recall, I mentioned that Sasha was admitted to CHB on Tuesday. She was having bowel issues as well as some bothersome neurological impairments. The staff in the Emergency Department exhausted their options so she was admitted for some pretty big treatments for such a little girl. Keith went in yesterday night to visit and bring Stefani and Ralph some supplies and came back telling of the little girl who was not the Sasha we know and love. As I wrote in my last post, she is a spirited, joyful, engaging, empowering, strong, and inspiring 5-year-old. I admire her fierceness. Last night, however, she was not fierce; she was resigned.

When Keith and I showed up at 10am, Sasha was still asleep. This is particularly odd for Sasha as she rarely sleeps past 7am. We sneaked in and sat down nearby her bed with True. Pretty soon, the metabolism team came around to check on her so I quietly roused her. When she saw us, she perked up immediately and sat up with a grin. When she saw True, that grin turned into a full-on smile. She giggled as True hopped up onto her bed and gave her kisses. The metabolism team was pleased that she was so responsive as she apparently hadn’t been in the previous days. She was able to hop down and perform the tasks the team asked of her with very little prodding. This pleased the metabolism team further. She showed them some of True’s tricks and said “thank you” as they left.

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First, my apologies for the huge gap between updates. Last week was, well, “one of those weeks.” Between work, sleep, and the multitude of birthdays, I nearly forgot to breathe and did forget to regulate my temperature.

Let’s start out with the birthdays! I want to wish a HUGE happy birthday to my friends and family:
My Daddy (August 15)
Cousin Lindsay (August 16)
Former Roomie Dorothy (August 16)
My Mama (August 18)
My “niece” Sasha (August 20)
My Uncle Mark (August 20)
My Gammy (August 21)
My other “niece” Alexis (August 21)

You guys make my world and I’m so blessed that you’ve been in my life for another year. I wish I could have been closer to all of you to help you celebrate your special days. Unfortunately, the birthday honorees live in five different states from Massachusetts to Texas to California so it was, alas, impossible. I do hope you all celebrated in the style worthy of your awesomeness.

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