Just like a Baby

Yesterday I commented that I was like a newborn with my sleep schedule and my eating schedule.  I was more right than I knew.  We drew a 4 pm appointment in Portland today.  This led to much scurrying about on my part to get ready to go.  I had to time out my "feedings" so that they would be evenly spaced.  This meant packing my evening meal, pump, flushing water, syringe, etc.  I also still need the suction device, so that had to be charged and loaded into the car.  Alternative communication device (AKA Magnadoodle). Snack for Karissa.  Pillow.  Yes, just like traveling with a baby.

We made it to OHSU right on time despite a few missteps on the way.  Why when you are in a hurry does she forget she's not riding the bus home???  Dr. Brickman and the speech path poked all around my neck and mouth and pronounced everything looks good.  They felt that I could give swallowing a whirl, but they had to get the thumbs up from Dr. Andersen first.  Permission granted.

Remember that baby analogy? Well, yes I could have used a bib.  Watching me try to swallow a half teaspoon of water was not attractive.  Because my new "tongue" will neither move things to the back of my mouth, nor cue swallowing, I have to find another way to do those things.  Put the water in the front of the mouth.  Suck (still swollen) cheeks in as much as possible.  Tilt head back.  Swallow.  Or spit.  Or gag.  Or dribble it down the front of yourself.  I made four or five attempts. One was really good.  None were terrible, as in I don't think I aspirated any fluids.  It is a strange sensation because the flap/tongue does not have any feeling whatsoever.  So I can feel the water in the front of my mouth.  Then I can feel it in the back of my throat.  In between, it disappears sort of... I can't feel it move across the flap.

Dr. Andersen pronounced me a rock star.  He wants me to get set up with Dr. Over to be fitted with the palate lowering prosthesis. He cleared me to travel if need be.  He'll see me back in two weeks. Conveniently on the first night of Hanukkah.  Again.  Hopefully our journey will be better than the seven hour trip back from Dr. Dierks office in an ice storm on the first night of Hanukkah.  Because a week with both Hanukkah and Thanksgiving needs a trip to Portland as well.

The digestive issues, if you are still interested in such things, have finally been sorted out.  I've slowly been adding in real food and subtracting formula.  I wanted to try for oatmeal with cinnamon, applesauce and walnuts this morning, but it seemed tempting fate to try something new and then get in the car for a long jaunt. Hopefully tomorrow morning provided the food processor can render them down enough for the tube.

When Karina was younger she would bemoan her terrible lot in life.  I would usually ask her, "Are you living in a refugee camp?  Do you have to walk five miles to get water?  Do you fear for your safety every time you go outside?  Have you ever wondered where your next meal is coming from?  Then your life isn't so bad." Sometimes you need to  take your own advice.  Sometimes when I hear about someone taking a fabulous vacation, running a marathon, celebrating some milestone, I quietly bemoan my current lot in life.  But for me, each day is going to get a little better.  While there will be changes to the way I live, I will improve and adapt until I have a "whole" life once more.  There are many people who know that each day they will not feel better.  That each day will bring new challenges to overcome not marching towards health, but just to keep functioning.  Sometimes you have to recognize that your life isn't so bad.