New normal

New  normal....We used to skip her nightly enema on Fridays so we could go out. New normal. That is not an option. Whatever changed in her anatomy since surgery will not tolerate one single day off.

Renal ultrasound performed and sent to Cincinnati Children's. Too a week to arrive and another week to read. Her kidneys are not swollen. Now we have waited 10 days for the scheduler to tell us when our next appointment will be. This will be a sedated scoping of the urethra to see if she can be cathed for urine. If yes, then we will be on a three hour schedule plus two new meds to hopefully expand her bladder capacity. There are no promise or projected stats. This is a  hoop we must jump through to progress.

Another hoop will be a week long stay to do a laxative trial. Massive laxatives at night and sitting on the pot in the morning, driving to the hospital for xrays of the bowel to see if it has emptied. Then bakc to your room. No outings are recommended. If she fails this week they will declare that she is enema dependent. But they have already told us she is an unlikely candidate for bowel continence.

Bottom line: You cannot get the urine port until you have tried to expand the bladder via intermittent cathing plus two drugs. You cannot get the enema port until you are proven to be enema dependent. Both ports need the appendix.

Both programs have wait times around 6 months.

Lest you think Cori is suffering, although this shoot was pre-surgical, I can assure you this is who she is every day! Except for about 2 minutes per day with rectal dialations and another 2 minutes for the start of the enema.
If we got to make our own dictionary, Cori's face would be side-by-side with her sister Jena's face under resilience entry. Lily would be in the definition of a Chinese blond.

And what will Ava be?

It has been a long time, but it went like a flame

Cori and I got home  mid/late June. I have always looked forward to summer, but this was not a year with a "summer break". Cori came home as she left. No one would EVER know how serious are her issues! Her newest Just Ducky catalog picture is on their Facebook page. Made just weeks before her total reconstruction surgery.
Wow. I just said tonight that when it is August on the calendar I will freak out. Never has there been less of a break......but Corin Malia Wright thrives.

Last Thursday her evening cleansing ritual went south immediately. If she is too full or the infusion is too fast.....whatever....she spent 15 minutes crying and 45 minutes either vomiting or beating her own head because of the pain or blowing every cell of her body to our bathroom wall.  We have had a few enemas go like this, but since our stay in Ohio/Cincy, we are now on a yahoo group where everyone shares everything. We learned to pay strict attention to the formula and infusion rate. But there was no way to fix this horrible adventure. She slept for 90 minutes after in the middle of the day.

There is a line in a movie I have romanticized since 1985. I was expecting Jessica and cried so much my nose bled. (aside: pregnant women get a pass here). So I would not let my daughter's watch it, ok. Don't judge me! I had no kids! But the Meryl Streep character tells the poorly cast love of her life/Robert Redford, that she has learned a thing.  "I've got this little thing I've learned to do just lately...When it's so hard I think I shan't go on, I try to make it worse. I make myself think...... When I'm certain I won't stand it, I go a moment more. Then I know I can bear anything.".  Two books about what women and orphans endure in China are in the mail to me. Going to advocacy blogs where I have seen the same children for years......then the blessing of rejoicing over faces who now have families! And I have to do this to keep Ava real...to keep the pain sharp enough for her and other orphans that we keep on when the bills mount above our heads....that we keep on when medical despair sets in re:Cori. (How precious did that grace appeared......if you wanted to put a face on grace, perhaps it would be Cori? Unmerited favor in Just Ducky clothing. Irony abounds.

Let yourself imagine the sacrifice you would endure for your mate or kids. Then take it another step. Let yourself imagine what you would do to ransom your mate or child from death. Then imagine you had never born or married or seen someone....and you could not ignore a God that asked you to do the same for a stranger.
Married to the most AMAZING MAN! He could be driving a new car, playing golf on Fridays and Saturdays. But he is SO content to take his girls out in clothes that embarrass me, to McDs, to Home Depot or the tire store, then have them trail him ALL day long....mowing, steam mopping the floors, blowing their mess out of an old van, running to the yard so Katherine can tell us how much she misses her little sisters while she is in Guatemala.....and how I wanted to make him stop practically beating her on the back as she hugged him and cried to leave....
But that is her daddy. That is her Abba.
My example did not show up until God gave me this man.
If Grace is an ocean we're all sinking.