GI Appointment

This morning was our appointment with the Gastroenterologist at Children's. It was a good appointment. Dr Soden was very good at listening to our concerns, and he provided a lot of information. He had read Marie's chart prior to our visit so he was familiar with her history which was really nice.

From this appointment we have the following: an evaluation will be done in the Feeding Disorder's Clinic at Children's. They will provide occupational therapy for Marie in the business of eating as she struggles to suck and swallow.

Marie will have an upper GI x-ray in February. This will give them a "map" of her GI tract, and they need to know her anatomy there as a feeding tube (called a G-Tube) is going to be a necessity in the future. Right now Marie is doing alright, but she's not gaining weight in a normal fashion. They're calling this "failure to thrive". She's basically struggling to get her nutrition. As Marie looses the ability to eat as well on her own (this happens with the progression of Leigh's Disease) she will need help. Enter the g-tube. It will help her get additional nutrition, but she will still be able to eat by mouth if she wants to and still can.

The doctor switched Marie from Zantac to Prylosec. Prylosec is a little stronger, hopefully it will help her with the pain she suffers from reflux (vomiting).

We will also meet with the Pediatric Surgery Team at Children's in February. When the time comes, they'll be the one's performing Marie's surgery. We will take all our questions and concerns to them regarding the procedure. It's actually a fairly routine one for them, so our concern is not the surgery itself but how Marie will do following it. Kids with Leigh's often struggle to "bounce back" following sickness and surgeries.

When they do the surgery to put the tube in they will also do an anti-reflux procedure (fundoplication; this should basically stop the reflux by surgical means, to read more on that go here: http://www.webmd.com/heartburn-gerd/fundoplication-surgery-for-gastroesophageal-reflux-disease-gerd).

Once again, none of this is happening now, we're just preparing for it in the future. Three months ago I probably would have lost it talking about putting a tube in my babies stomach to help her eat. Today, it's just one of the things we'll have to do to make life better for Marie. She will still be able to eat orally, and taste food, which is important to me since I think that food is one of the best things about being here. It's just something we will have to do... Marie can handle it. She is remarkably resilient.

We also had a nice night in Denver last night, we went to eat at Joe's Crab Shack, Josie had a blast. It was nice to pretend we were normal, without any worries for an hour or so. I'm nervous taking Marie out being that it's cold and flu season, but it was so nice. A much needed break for us all.

And, since I've decided I like posting poetry here (I don't think that people read it enough anymore) here is my addition for this post. Enjoy:)

Heavenly Grass

My feet took a walk in heavenly grass.
All day while the sky shone clear as glass.
My feet took a walk in heavenly grass,
All night while the lonesome stars rolled past.
Then my feet come down to walk on earth,
And my mother cried when she give me birth.
Now my feet walk far and my feet walk fast,
But they still got an itch for heavenly grass.
But they still got an itch for heavenly grass.

Tennessee Williams