Valleys, Hills and Everything in Between

 

I'm not sure if the correct word here is "irony," but, gosh, things with Ezrah are smooth... until they aren't. It's ironic. A bit. I'm sure there's an Alanis Morissette song here somewhere.

I was JUST going to blog on Sunday about how Ezrah's leg pain has been VERY minimal, and we have been so thankful that the prayers are WORKING. This sweet relief has come with ZERO medications, even OTC pain meds. *PRAISE HANDS, JAZZ HANDS, ALL OF THE HANDS*

But, this Monday, things took a turn, and Ezrah's hands and feet are absolutely COVERED in a rash/hives, and she is INCREDIBLY uncomfortable. We visited her Primary Care Doctor today, and again, the word "auto-immune" came up. Ezrah has so many doctors scratching their heads because she is not presenting classic symptoms, pointing one way or another. She's affectionately known as their little anomaly patient. But, clearly, she is sick. She has inflammation inside, outside, ALL OF THE SIDES. 

So, with today's visit, we were presented with a lab draw that neither of us was emotionally prepared for, but Ezzie handled it SWIMMINGLY, and the phlebotomist was THE BEST WE'VE EVER HAD. (Perhaps NOT knowing a blood draw is coming ahead of time is the ticket.) Shout out to Becca at Providence. She deserves the "Becca-yoncé" title here! She was AMAZING with Ezzie.

Rheumatology labs have been ordered by her PCP. (Aside from the gazillion she's already had, like ruling out Lymes, etc.) There are some other markers that Dr. Holbrook would like to screen her for. We are still waiting for the MRI to discuss another outpatient procedure where they would do an ablation on the Osteoid Osteoma. We have been in touch MULTIPLE times with Randall's Rheumatology department, but they have done nothing but pass us off because Ezrah "just doesn't have enough symptoms." I'm not sure how many MORE symptoms she needs... 

But, per my insistant phone call in JANUARY, they agreed to "check her" on April 5th with ZERO urgency.

Perhaps this isn't auto-immune. 

But, she clearly has inflammation. 

Why? I will continue to fight for answers.

If you're new here, Ezrah currently has:

* Osteoid Osteoma in her leg, which causes extreme pain, especially at night. But sometimes, during the day.

*random bouts of uveitis in her eye. (This is where the eyeball itself becomes majorly inflammed.)

*random rashes. (These started as an allergic reaction to the antibiotics she was on for the bone infection.) But, this one is as random as they come with similar characteristics and is INCREDIBLY itchy.

Prior to September 2022, Ezrah was as healthy as can be. Rarely sick, albeit clumsy. (Girl broke her arm DANCING when she was 7. Girl after my own heart. We don't dance quietly.) But, this has been a flood of so many things. Some days, most days, honestly, are just normal days... and other days, it feels like a LOT. It's a lot of appointments. A lot of trepidation. A lot of holding it together for everyone else. A lot of phone calls. A lot of medications. A lot of car rides. A lot of books and reading. A lot of time on our knees.

And...NOT a lot of answers. So, like a certain cartoon fish, we just keep swimming.

If you've read this far. Thank you for being a part of Team Nelson. Clearly, you care about our girl, and we are extremely grateful for you!

We couldn't have gone through this without the A-Team. Bless.

I'll therapeutically write more when we know more....