Ezrah JOY's Fight

The three of us (T, B, E) plus LUNA LOVEGOOD loaded up for the trek to Randall's to visit Doctor Bob and go over Ezrah's CT Scan from Tuesday. As you can see, Ezrah did better with her pup by her side. (You could SEE her smile under her mask!) Luna was a hit and did AWESOME.  Dr. Bob loved meeting her and Ezrah honestly seemed so much more at ease. It amazes me what this dog has done for all of us! Dr. Bob DID see something in the scan and he believes that Ezrah has an Osteoid Osteoma. (This was the moment I started sweating and needed Luna!) Here's the thing: The symptoms match. The pain level matches. The bone SHOWS *something* there outside of the portion he removed during surgery and it's textbook. He had a 2nd set of eyes confirm what he saw, and we are being referred for further treatment. Treatment has 2 options: 1. We treat with a non-steroidal drug nightly. (Advisl or Naprosyn) Essentially we try to tackle this at home on our own. 2. Ezrah has an ablation of th...

They say kiddos who've spent a stint in the hospital, or with medical issues just get used to all the tests, pokes and prods. Eventually. "They" say.  It's been over 5 months, and Ezrah still hasn't. Nothing about ANY of this feels normal and not scary. I'm not sure she will ever get "used to" it. I do think she's surprised herself and ALL of us with her resilience. She just. keeps. going. She's done everything she's been asked of. But, there's fear. And THAT is something I will never unsee. It's not fair. Please hear me, there are those suffering SOOOO much worse. I know this well. It's not a competition with who's fear or ailment trumps the other. FEAR is valid. And life is FRAGILE. BUT.... When you see FEAR in your child's eyes. When they become paralyzed to find words. When they tip their head down and just look at their shoes. When the tears well up. When the mask hides their trembling lips. When the cold, sterile...

 *our tradition after these visits is a trip to Barnes & Noble for the book lover* Dr. Bob was amazing as always. BEST ORTHOPEDIC DOCTOR IN ALLLLL OF THE LAND! Hands down. (He even gave us permission to bring Luna to Ezrah's next visit!  Ezzie told Dr. Bob, "but, she's not fully potty trained!" He jokingly said, "some of the people here aren't either! Bring her in. I need to meet Miss Luna.") *tears* (Did I mention he's from Tennessee? Everything he says in that southern drawl is so much easier to hear.) I can't tell you how different Luna would make these appointments for her. There is a LOT of BIG talk and rightfully, BIG fears. But, he's great at talking her down off ledges and we adore him. The Nitty Gritty: A CT scan has been ordered and should take place next week. (Tried to get in for it today, but, oh hey INSURANCE hoop! How ya doin'?) Dr. Bob believes Ezrah's leg is trying to create bone on bone tumors. There's a fanc...

*I found this older pic of Ezzie while scrolling and looking for a picture to share, and gah, it just sums up my girl. Always joyful. Caring and loving to others. Her smile has always been contagious. Her middle name is JOY and she is her namesake. Ezrah JOY. Her sparkle has dulled though. These last 5 months have been hard, and these last 6 weeks, since her first medical reaction, I've seen the first signs of weariness. Exhaustion. She's tired of it alllll. Who can blame her?   With that...here's the latest: Ezrah saw the Opthamalogist last Friday for the Uveitis that occurred the previous weekend. On FRIDAY, she had ZERO signs of lingering inflammation in her eyes, so we were basically told to go home and call the on-call Opthamalogist before doing ANY at home treatments if it happens again. (Since this has occurred intermittently since 2020, I've had drops on hand (her prescription from 2020) that always nip it at the first sign.) Dr. Olsen was incredibly kind and un...

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 ...