Ezrah JOY's Fight

Here we go again..... Hello Village. It's been a minute. We've had a few weeks of "calm" and respite. But, this weekend, Ezrah's body presented signs of inflammation again in the form of Uveitis. (The same eye conditioned that occurred in early 2020.) I have ALWAYS wondered if this was related to the inflammation that turned into the mass/bone infection this last September. It is clear that Ezrah's body gets MAJOR inflammation, but WHY. WHAT is causing this? All signs and symptoms point towards various auto-immune diseases that I refuse to give breath to. My besties swore me off Google and Web MD and I have obliged. The whole time with the bone infection...the question was always: is this chronic? Is this auto-immune related? Will this return? Well, here we are in the "we have another situation" camp. So, what now? More visits? More tests? We have calls back into Rheumatology at Randall's, the Opthamalogist, and have left messages with her other ...

Dr. Bob broke up with us today.  For good reasons. Ezrah's infection is GONE! Her bone (Tibia) has regrown and healed. The mass is 100% dissolved. The *dead* bone has been restored. His parting words to her were "go and be ridiculously average and as active as you can be."  WE ARE IN AWE. God is good.  There will always be a chance of a reoccurring infection. We simply still don't know WHY this happened or if this is a chronic issue, or perhaps auto-immune related. These are answers that will only be known through time. But, Ezrah knows to be vocal if her pain returns. Dr. Bob believes this may be an isolated incident...and asked her to please not be unique in this...or an over-achiever...or one of those rare statistics that has osteomyelitis reoccur time and time again. (Which probably better explains his parting words.) He assessed her gait: IMPROVED! Thanks to Luna Lovegood. Ezrah loves playing and dancing with her new puppy! We are hopeful that today's bloodwo...

Ezrah is 14 days in on Medicine #3 and well, it works....when she can keep it down. This is a tough one because she tends to throw it up. And ya know what? She's getting tired of it. Who wouldn't? Girl's exhausted.  We met virtually with Dr. Bob (angel doctor) today and the plan is to finish STRONG these next 14 days and then break. Wait. Hope. AND PRAY WITHOUT ceasing. We will go in for more imaging at the end of December or beginning of January. That will be about 1 month since our last imaging and a good comparison to see where this infection is at. We desperately need to give Ezzie a break from this medicine and work on healing her gut. We've had a few scary instances come that I believe are GI related. And well, with respect to Ezzie, I'll just say we are being referred to a GI specialist as well. Fix one issue, but provoke another. We had no choice. If we DIDN'T follow through with antibiotics, it is very likely Ezrah would lose her leg. So, we will cross ...

  Happy Thanksgiving! WE ARE THANKFUL. SO VERY THANKFUL.  We met with Dr. Gilbert on Wednesday to discuss what the next step should be in Ezrah's journey. We have 2 options: Option 1. Do nothing. Wait.  The infection IS still there. Going this route is risky in the sense that if/when the infection returns, we will HAVE to start completely over, including surgery to go in aggressively and bone-wash. Option 2. Start a 3rd antibiotic and PRAY she does not have an allergic reaction. Ideally, the team would feel like they could sleep a little better (us too, if I'm honest) if she has another 6 weeks of treatment to really nip this thing and eradicate the infection. Obviously there is risk of another allergic reaction and antibiotics are stupid-hard to get a hold of right now. Stupid. After going back and forth and outweighing the risks/benefits as well as talking WITH Ezzie and hearing HER voice, we are going with Option 2. We would like to keep Ezrah from having to forgo anot...

  This journey has often felt like two steps forward, one step back. Ezrah has started developing another allergic reaction to her 2nd medication. So, for now, we are stopping ALL medication until we can come to a consensus with her team on Plan C. The flip side is that her x-ray today showed that the medicine is doing what it is supposed to do. Her bone is repairing and the mass is going away. Her x-ray looked like a COMPLETELY DIFFERENT tibia. The "moth-like holes" have begun to fill in and you could SEE that her bone density has gotten thicker. Her gait has improved greatly and Dr. Bob is encouraging her to bear weight and MOVE because that will help the bone heal. "Bones are meant to bear weight." Plan C for Dr. Bob would be to go in surgically and create a "hole" filled with an antibiotic, covered in a type of "cement" that slowly seeps into the bone. However, it would require a 3rd surgery IF she had an allergic reaction and had to have it ...

Our Sunday morning has been spent with about 73 other Portlandians in the Emergency Room at Randall's Children's Hospital. (Not where we wanted to be. Eww.) But, yesterday, Ezrah started breaking out with a rash covering her entire body and this morning her lips and face were swollen and covered in BIG, red blotches. So, in we went to the ER. We ain't messin' around! The doctors aren't 100% sure if this is an allergic reaction to her medication, which apparently CAN happen in week 4, OR something viral that her body is fighting. Again, our little anomaly has everyone scratching their heads...and her scratching literally everywhere! Because her white blood cells were low on Tuesday, they did another full panel of bloodwork today. (She HATES needles at this point. But, today's nurse was great at listening for EZRAH'S voice, even if it took a bit to find.) So...we are switching medications to treat the bone infection. Waiting. Waiting. We are praying she doesn...

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 pr...