Bella Update

We were sitting in triage.  Bella is being measured for height and weight.  She is silly, but knows exactly what to do and when. It's cute.  It's sad.  And in my mind's eye, overlayed, is Bella in her KidCart in a triage room being measured for height and weight.  It's surprising what triggers a memory, something simple usually.
So today was pulmonology.  She'll start a bunch of meds to help with allergies/asthma.  The hope being to give us the most accurate information from the sleep study in November.  No one doubts she is desating at night. I'm still worried about getting the test performed.  Will Bella cooperate?  She didn't in August.  We now attend a special therapy once a week just on medical trauma, hoping to lessen some of that fight/flight response to medical equipment and personnel.
Doctor noticed clubbing of her fingers.  Why hasn't anyone called it that before?  (Yes, I am a little annoyed here.) We went through a whole series of testing for Juvenile RA because of her fingers and toes.  And now, one year later, those same fingers and toes are showing one of the evidences of her chronic hypoxia.  I'm so afraid. All of this compensating she has been doing for all of these years, what is it doing to her body?  And when is her body going to decide to scream for some relief? And will she survive that?  So I am working with ENT, Sleep Specialists, and Pulmology, and the medical trauma therapist to get to the bottom of this.  Everyone keeps mentioning her heart, so I may have to rope in Cardiology as well.
ENT doesn't think she'll tolerate bi-pap if she needs that. She mentioned she was afraid we'd have to go to the trach.  Pulm says she's right, if she doesn't tolerate the bi-pap, it's a trach.  But let's not jump the gun.  I really, really, really don't want to go back there.  At all.

To keep it real, here is how we deal with it - we put on a brave face and we smile :)
Dr. Bella, what she calls herself while we wait for doctors.

Old Town Amish Store Salt Rising Bread (from Starter)

4 3/4 cup  bread flour
3 T sugar
2 1/2 teaspoon salt
1 package of yeast
1 cup warm water
2 Tablespoons soft butter
1 1/2 cup salt rising starter
1 extra large egg
1 Tablespoon water

In a large bowl, combine 1 cup of flour, sugar, salt, and dry yeast.
Add milk, butter and salt rising starter.
Slowly mix in the additional 3 3/4 cups of flour.
Knead dough for 10 minutes.
Cover with oil and a wet towel and let rise until doubled.
Beat down, shape into desired loaves and let rise until doubled.
Brush with an egg wash and bake 375 for 30 minutes. or until pounding on loaf creates a hollow sound.

Starter: After use, feed the starter with one cup of water, 3/4 cup of flour, and 1/4 cup of corn meal


When I bought the starter, it came with this recipe and these instructions:
For starter add two cups of warm water to the enclosed bag mix. 
Place in a container and cover loosely.  Allow fermentation to occur for 24 hours.