STILL waiting...

10:10am, 10/4/2022

I just got off the phone with Dr. Gilbert (infections specialist at Randall's) and basically....we are still in limbo. The biopsy samples that were sent up to the University of Washington have not yet grown the "bacteria" that would be indicative of an infection in the bones. It is not ruled OUT, but it has not yet produced the results to show otherwise. They want to wait a few more days to see how the samples react. The pathology report (to rule out OR confirm) malignancy has been sent off to The Mayo Clinic. He's direct words: "Do not read into that. We send about half the samples to The Mayo Clinic."

I don't know. I'd feel more "peace" if he had said they send 100% of their samples there. 

How is Ezrah? She's doing amazing. She is down to one dose of pain medicine (at night.) She's the bravest, strongest kid I know. We are trying to do "normal," while doing our best to keep her healthy and NOT exposed to unnecessary germs. The cards and gifts have been such a JOY to her heart. (Pic is an example of SOME strung up cards.) Thank you to all of you who've sent a card or gift. I was always taught to send a "thank-you" card, and I must admit...I can't keep up...and I can't expect her to either. It's a beautiful overwhelm.

At the moment, we go back for a follow-up on Thursday (10/6)  at 1pm to get the dressing changed with Dr. Umberhandt (the Orthopedic Specialist who performed the surgery.) I assume we will then also discuss the "dead" portions of her leg bones and further imaging.

Prayer Requests:

1. We need direction. We need to confirm WHAT this is so we can make a plan. 

2. We need Ezrah to eat. She has had little to no appetite (unless it's Wonton Soup.) This has been the case for several months. But, we know there is nutrition in food and her body desperately NEEDS the nourishment.

3. Pray for Aurora's heart. She's turning 10 on Saturday and it's been a struggle for her to see "big sis" getting so much. (Again, she knows the VERY PG version of what's going on.)

Tony went back to work today. I have so many mixed emotions about that. We have to live. And eat. And pay bills. We have to do "normal." But, EVERY time the phone rings my stomach drops into my toes. I'm so scared of being alone...without him. I'm terrified of getting a call and he not by my side. I know HIS heart needs normalcy. Interaction. Purpose.  My mind understands all of that, but, it's my heart that struggles....and my mind that wanders so far off the rails when he's not here to reel me in.

REQUEST: If you plan to stop by to visit, PLEASE call or text first. And please don't if you've been exposed to ANY illness or sniffles. It is so so so imperative that we keep Ezrah healthy right now. Please give us grace to NOT respond. Honestly, I'm trying to nap, or rest as much as I can...and to just BE with my people. We are still attempting to "do school." And, honestly, there's times I just don't *feel* like re-telling the story or talking about it. Again, we are tinkering with "normalcy."

Many of you have asked if we plan to set up a "Go Fund Me." Since we ARE in limbo right now and do NOT know the path this will take, we've chosen to wait. Several have sent some money to my PayPal, Venmo or Cash App. Thank you. That has covered the three days that Tony had to be out of work. THANK YOU! We truly have been blown away by the generosity of our village. It sounds soooo cliché, but, I REALLY struggle to even string the proper words together to express our gratitude. 

*Besides the obvious need a Go Fund Me would help our family, IF it is determined in ANY way that Ezzie will need long term health care, we would set up something for her future as well. 

Again, we will keep everyone posted. 

Thank you for reading my musings, for letting me share my heart. For being a *safe* for me.

The meals have been a HUGE blessing. It has been so nice to not have to leave for "grocery shopping." I'm struggling to let Ezrah out of my sight. I don't want to leave her if I don't have to...and instead of cooking, we've gotten to do a lot of family game time...simply PRICELESS.

Again....Thank YOU.

When we know...you'll know.

KEEP PRAYING. God knows.