Here we go again...


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 doctors so that we are all on the same page. We just really want answers for her. We have an appointment on Thursday with the allergist. Initially, this is to confirm her allergies to various antibiotics, but, I'm hoping they may rule out some food intolerances also. 

We have been actively working to heal her gut from the 12 weeks of heavy medication. An ANGEL of a couple are graciously brewing Ezzie weekly rounds of Kombucha and we are sooooo grateful. 

As you can see, Luna Lovegood has been a Godsend. She has the BEST temperment. We initially wanted Luna for Ezzie as both an emotional and therapy support animal. But, what I didn't know was that I needed Luna just as much. I love this dog so much and she is just such a sweet heart. She's been a heart-healer as I've struggled through this less than graciously. We've got quite a routine now that includes a nightly a snuggle-sesh. Ezrah, Luna and I begin Puppy Kindergarten at Enzo's (Ezrah's DREAM career path) on Saturday. I am so glad they're willing to make an exception and let Ezzie hands-on train in the class too. Since adopting Luna, Ezrah runs, plays, dances and snuggles with her pup. Daily I'm in awe that we went from a wheel chair to DANCING!

So, friends...we sure would appreciate prayers as we navigate this next chapter. And oh how we pray that it's a short one. Like, two pages. Max.




Comments

  1. AnonymousJanuary 30, 2023 at 4:45 PM

    Two steps forward, one step back. Dancing is awesome, but let's find something other than the Cha-cha. Hooray for Luna! Prayers for Ezrah!

    ReplyDelete
  2. AnonymousJanuary 30, 2023 at 5:14 PM

    Back to St. Joseph! While he sleeps he gets guidance. Be at peace, God has a plan, He always does.

    ReplyDelete
  3. AnonymousJanuary 30, 2023 at 8:13 PM

    Praying for answers and clear information.

    ReplyDelete
  4. AnonymousJanuary 31, 2023 at 1:17 AM

    Praying for supernatural PEACE as you wait. Praying for the answers to be made clear and healing for your sweet girl. ❤️

    ReplyDelete
  5. LoriJanuary 31, 2023 at 8:08 AM

    Even though this is daunting for all of you, God is your Refuge and Strength. He is with you on this and He promises to guide you through it all . Sending up prayers for all of you. Will also pray for the Dr's. That God will show them what is causing this inflammation and how to cure it. Isaiah 41:10 is a wonderful promise.

    ReplyDelete
  6. AnonymousFebruary 3, 2023 at 10:49 PM

    I hope the outcome from Thursday visit is good.

    ReplyDelete

Post a Comment

Popular posts from this blog

Back at OHSU for a JAUNT

Image
 December Update - Kinda a big one.  Few people know, but Tony had another recent "flare-up" with his "sub-par," VERY damaged pancreas that began on Sunday and lasted two days. (Yes, he took his citizenship test in pain, cause you don't reschedule with the USCIS.) But, we aren't messing around, and so today (Wednesday) we found ourselves back at OHSU for a check-in. (Remind me to make a PowerPoint Ted Talk on TRAUMA/PTSD.)  We left OHSU with a better plan on how to manage these "flares" so that in the future, he doesn't have to miss MORE work time. (2 days off this week) And we left with future lab draws for some genetic testing. Jury says this is all still "idiopathic".... so, in a true episode of "House" fashion, we're still "guessing" on what to stay away from as far as nutrition. But, this was the VERY first time we'd heard about options should this ever become chronic and/or progressively worse. There
Read more

Another surgery for Tony on 6/10

Image
Well, village... we come to you today with another update/prayer request. After the ultrasound procedure that Tony had in March, it was discovered that he has some "sludge" in his gallbladder, which CAN be a precursor for another round of pancreatitis. (Apparently, sludge is not something most people have, and given "the perfect storm," it COULD land him back into a lengthy stay at OHSU, or God-forbid, worse.) Tony met with a surgeon on Tuesday, and it has been strongly advised that he has his gallbladder removed to eliminate that as a possibility. Surgery is set for June 10th at OHSU. If you know Tony, he is, of course, trying to wrangle anyway he can to get back to work for financial reasons in LESS than the three week sentencing. Although it will be a robotic surgery with four incisions, the down time is 3 weeks. Best case scenario. He also feels like he's FINALLY back to his fighting weight and FULLY recovered, so, to him, this feels like a MAJOR setback. Un
Read more

Angiogram Procedure on 3/20

Image
It's been a minute. Isn't that just AWESOME?! I've been wanting to come on here and share the latest... We're coming up on the one year mark of Tony's initial hospital admission. March 28th, to be exact. Often, it feels like yesterday. But, sometimes, it feels like a lifetime ago. Because of that, doctors are choosing to do some recon and "check" on things. Tony will undergo an angiogram on March 20th at OHSU. The procedure is supposed to be 2-4 hours, and I'm sure you remember how well he does with those!? (Not well at all. They ALWAYS take longer, with a few hiccups in the past. We've lost count, but I think this will be the 5th one.) My guess is a CT will be around June/July to further check his pancreas. With the new year comes new out-of-pocket maxes and deductibles. But, we believe this is necessary for some peace of mind and to make sure staying off all medications is best. We are hopeful this will just be a quick in and out procedure. Would
Read more