3 Down, the Unknowns to Go

Update on Ezzie's 3 appointments this week:

1. LAB RESULTS. Ezrah's inflammation markers are going down. Which means the meds are working! There ARE a few labs we will be having RE-DONE on 11/17 to rule out a few ADDITIONAL things. (Lyme, High Glucose, Liver & Kidney Check) Some of these were mildly concerning with the Tuesday's blood work and Infectious Disease, (Dr. Gilbert) Tony and I agreed together that we needed to rule some other "issues" out. We also need to regularly monitor HOW Ezrah's body is tolerating the heavy dosing of antibiotics. We are heading into Week #4 of meds and so far, they're working. 

Bloodwork and pokes are tough on Ezrah. she gets SUPER scared and has a REALLY hard time finding her voice. (MOST of the people we have encountered on this road have been EXTREMELY kind and gracious to her. However, there have been a few who seemingly view me as a "helicopter mom" as I try to help her FIND her voice and what/how SHE prefers to have things done. This has been SUPER hard.) Ezrah genuinely gets paralyzed by her fear and has a hard time speaking in a BUSY, doctor-oriented environment. It's fast paced and some just don't have time or care to try and listen for HER voice. This is why we LOVE Dr. Bob. He genuinely ignores me and just talks WITH her, not TO her or AT her. But, WITH. That man needs a special badge.

2. Dr. Bob (Orthopedic Surgeon) will do another imaging scan (most likely x-ray) on 11/15 to compare and see if the bone is re-growing/healing. THIS WILL BE BIG. IF the bone is not repairing, we will discuss the 2nd surgery to "bone-wash" and manually have him try to repair it. (The entire team, including us are in agreement with this decision) We don't want to do another surgery unless it is 100% necessary. 

3. Dr. Gilbert infectious disease spent nearly an hour with us today to check on Ezrah and so VERY gently go over the labs. (God has given us the BEST team we could've ever dreamed of. Truly.) We are looking at the bone infection as being one of 3 things: acute, chronic, or auto-immune. As always...TIME WILL TELL. Waiting...waiting...more waiting. My favorite. They are still treating as IF it IS "osteomyelitis."

Ezrah has GAINED 3 pounds since surgery despite VERY little appetite. HUGE PRAISE there! Her walking is improving daily, although when she "pushes" a little too hard, she's much more "ginger" on it the next day. She DID ask to go on a walk down our road this week AND she DID go Trick or Treating. (HUGE PRAISE there, also!) The headaches (nearly daily) are still a mystery and something we are monitoring. I can't help but think it's her body working out the influx of medications she had while under general anesthesia, but, we just don't know. It is NOT a known side effect of her medication. Dr. Gilbert does NOT believe the infection has spread ANYWHERE else in her body, including her brain. ALL THE PRAISE HANDS.

What's NEXT?

*11/15 Randall's Hospital for another scan/image w/Dr. Umberhandt 

*11/17 MORE LABS per Dr. Gilbert 

*Continuing with meds and Probiotics 

*Light stretching here at home to regain some muscle memory with walking correctly.

*We ARE entertaining the idea of acquiring a Service Dog that could assist her with walking, emotional support, and accompany her at appointments. Heck, if the dog could tap my leg at the 4 *alarmed times* per day for dosing, that would be a cherry on top! Dr. Gilbert actually encouraged us in this pursuit and thought it would be quite beneficial for Ezrah. If you know of a program (it doesn't need to be pedigree, it could be a dog that didn't quite make the cut even) but, a trained, older dog willing to work AS A SERVICE DOG.

*Most of the programs I've found are often for veterans with PTSD, or the severely disabled and have a 2+ year wait.

(Apparently cats have a particular risk of a certain disease that could be harmful for Ezrah in her condition, but dogs and puppies do not. This was why we got the "no" on kittens, but a GREEN on this.)

As always, we are grateful for our village that has continued to check-in, send love and cards to Ezrah and PRAY for our family. Even looking back a month ago, I didn't know HOW we we're going to get through this. But, here we are, taking everything one step at a time and TRYING desperately not to worry about TOMORROW. Holding those dark thoughts captive has not been easy....as a mom. IYKYK. Not one part of this has been easy. Stress has never been higher in our home and some days absolutely SUCK. But, we are grateful everyday. We have nor will ever take GRATITUDE for granted. Some of you I've seen out and about, you simply hug me, let me cry and ramble...and then you ENCOURAGE me. And for those who've encouraged me to "go out," I'm just not quite "there" yet. I still struggle leaving her for long. But, thank you for not giving up on me. I'm in AWE of the sheer number of people lifting up and supporting our family. Thank you. Thank you from the bottom of our hearts. WE SEE YOU, WE FEEL YOU! 💜💜💜