Friday, March 1, 2019

News: diagnosis and running behind

As usual, I'm running behind.  Just as I start to feel like I'm getting it together (but never quite got-it-together,) life throws me another curveball and I'm scrambling again.

refabulous rare disease, mastocytosis, EoE, new diagnosis, parenting

But from the depths of feeling overwhelmed, I have lots of news to share with you.  Here we go!

1.  A diagnosis!  Actually, make that two. . . .

refabulous

After meeting with a new allergist, one who listened -- actually LISTENED -- to Donovan's case, and studied all of his previous labwork and records, we were handed a tentative diagnosis of mastocytosis, pending a bone marrow biopsy for confirmation.  He also suspects EoE (eosinophilic esophagitis) to be causing his frequent, uncontrolled regurgitation.  Donovan will be having another endoscopy and biopsies, as soon as we can coordinate that with a new GI.

2.  All of this has been very overwhelming. . . .

I've had so many emotions, dealing with this new information.  It's a LOT to take in.  Just the data alone is SO. MUCH.  It will mean a huge lifestyle change for all of us, if this is confirmed.

refabulous rare disease, mastocytosis, EoE, new diagnosis, overwhelmed, parent

I've been incredibly sad, and angry, and then sad again.
For all the wasted time, energy, pain, and unsuccessful treatments he's had to endure.

My heart aches for my sweet boy. . . .
At what more invasive tests and doctors mean for him, what these diseases could mean for him as he grows older.
He is so brave, so courageous.  He rarely complains, even about all the needle sticks, gross medicines, prying doctors.  He takes it all in stride.

refabulous

refabulous

3.  But I also feel gratitude. . . .

To God, who guided us to this doctor.
I had prayed and prayed and prayed for Donovan to just be put before the right pair of eyes.
I kept hearing "be patient" when I prayed.
So I kept waiting.
And just when we were ready to give up, my husband chose the new doctor, literally at random.
But, I don't believe it was random at all. . . .

refabulous rare disease, mastocytosis, EoE, new diagnosis, overwhelmed, parenting

We had no idea he had specialized in pediatrics, had been trained by a world-class mast cell specialist, and was very familiar with mast cell disorders when we chose him!  
So I am very grateful for this doctor, and that he took the time to listen, to look, to read.

4.  New medication. . . .

Donovan also started a new medication, a mast cell stabilizer.   He's now off of all the other medications, too!  So far, no adverse reactions. YAY!

refabulous rare disease, mastocytosis, EoE, new diagnosis, mast cell stabilizer
one day's worth of medication

5.  Longest project ever. . . .

Before and during all of this, I worked on a patio cushion re-covering project.  I dragged it on for months and months, I'm embarrassed to say, but it is finally finished. . . .

refabulous patio cushion makeover, sewing

Since finishing this project, and also dealing with Donovan's diagnoses (and tracking down medications, coordinating doctors and records and paperwork etc etc etc,) I'm rushing, and yet running behind again.  I hope to be caught up soon.

6.  Coming soon. . . .

refabulous vintage sheets and linens available in the shop

I've been a vintage linens collector for years, and I've amassed quite a large collection -- more than I could ever possibly use.  I've decided to offer bundles of vintage linens in my Etsy shop very soon.  I'll be offering fat quarters, 6" cuts, and scrap bags!  I will keep you posted on the release date!

refabulous vintage linens and sheets available in the shop


7.  Shelf update time!

I realize I hadn't posted in quite some time, so here was my Valentine's themed coffee mug shelf. . . .

refabulous thrift score shelf repurposed into coffee station, valentine's day theme, coffee mug shelf

And here it is now, decked out for Spring. . . .

refabulous thrift score shelf repurposed into coffee station, coffee mug collection spring green theme

I'll be catching up on orders in my shop, if anyone needs me (at least between doctor visits.)  Meanwhile, please keep Donovan in your prayers!  He can sure use them.
And I'll keep you posted.
Talk to you soon!
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Linked up at Kelly's This Ain't the Lyceum!
Check out the other Seven Quick Takes, especially the one written by my dear friend Kristen.


((P.S..... I realize that in some spots, particularly on mobile devices, my blog switches back and forth to different fonts.  I have NO idea why it does that, and I find it as annoying as you do.  Please bear with me, as I try to debug this.  Thanks for your patience!))

3 comments:

  1. Different fonts or not love y'all and your blog and sweet family ! Thanks for sharing your adventure in life, and your amazing quest to find answers for your son. You inspire me to be a better mom and person ! Praying for all of you and for D !

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    Replies
    1. Love you, Jamie! Thanks for being there for us, and for your prayers! I truly appreciate you being in my life.

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  2. Hello amazing lady: Was looking for fall pillow ideas and ran across your blog and love it. I love all your diy ideas and your personal journey with your family. I am a grandmother and had three kids of my own but never went through such medical hardships with kids. My heart goes out to you and I will be bringing you before Father God our Creator and just want you to know He loves you and your family dearly and is near to you. I am looking forward to trying out some of your ideas. Grace and peace and love, Cathy Carey

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