-The Millers

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The family will receive friends following the service. In lieu of flowers, memorials may be made to The ALS Association Jim “Catfish” Hunter Chapter, 4 N. Blount St. Suite 200, Raleigh, NC 27601 (or click here to make a donation online).

CLICK HERE for more information about services and directions, etc.

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Received a sad update from Susy’s son Max:

After a courageous six-year battle, Susan Miller died from ALS-related complications today at 4 PM. She passed away peacefully and was able to spend her final hours with her husband Donnie and her sons Max and Gus.

 

Her family is deeply saddened by her loss, but relieved that she was able to go comfortably after fighting so valiantly for so long. Anyone who knew Susy knows that she had an unbreakable spirit and a heart full of love for so many friends and family members. We will never stop missing her.

 

Funeral arrangements pending. We will keep everyone posted.

We absolutely will never forget her! Anyone sending a article and/or photo, I will gladly post it in honor of Susy and her memory.

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If it seems like we’ve been quiet on here, it’s because we’ve fortunately had very little going on.

 

My mom’s been doing well over the past week. All of her numbers have been good, and she’s been able to get into her wheelchair for a few hours most days. She’s even used the Tobii (the computer that speaks for her when she types words out with her eyes) a few times.

 

We thought we’d give you another peek into the daily routine around here. As you can see, my mom’s bathing regimen is practically a day at the spa, although I took these photos before we got to the acupuncture (just kidding.)

 

We’ll keep you posted if anything new happens, but for now we’re just glad to be settling into a routine. Thank you again for all your thoughts and prayers.       ~Max

Susy’s routine (aka: Day at The Spa)

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[Update by Max Miller]

Just wanted to let everyone know my mom’s doing well, and we’re all getting used to the new routine with her at home.

 

We’ve got a second ventilator and oxygen for her wheelchair so she’s able to get out of bed and watch some TV. Today she watched “Tomorrowland,” which, from my understanding after watching for about 35 seconds, is a movie about George Clooney trading quips with a precocious British girl.

 

Mom’s back in bed now, but she’s been doing well for the past week or so, so we’re hoping things will be keeping calm around here for a little while. Thanks to everyone for the cards, prayers, meals, visits and love. We all appreciate it, and I know my mom does, too.

~Max

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After a rocky start to coming home–she was rehospitalized shortly for what the doctor thought was pneumonia, but it turned out not to be–he didn’t realize that her lungs were already weakened by the ALS. So, great news, it wasn’t pneumonia!

I received an update from Susy’s son Max:

She’s been home since last Tuesday and doing fairly well. All of our nurses have been great so far and we’re getting adjusted to life at home with the vent. She even was able to sit in her chair for a few hours today.

 

There has been a slight problem with her feeding tube this past weekend, so she’s going to be going to the hospital tomorrow for minor surgery, but she should be back home again within the week.

Prayers and good thoughts with them all!

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Susy’s son Max has let me know that Susy will in all likelihood be home on Monday–much sooner than anticipated. All of her supplies for her home vent care were delivered to the house today.

They also found out that they qualify for 24 hour nursing when she’s home, which is terrific news. Max and his dad have been training on how to take care of her when she gets home, but it will be a much added relief to have professional care on hand at all times.

Susy is in great spirits and is so excited to finally be out of the hospital.

Let’s give a WOO HOO!

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[Published by Amy Celona]

UPDATE! Susy is practicing her tongue exercises in anticipation of leaving rehab in a few weeks (prayer warriors needed). She had a tracheotomy at the end of August but has been having trouble breathing on her own with the breathing tube.

I got an update from Max Miller (son) and this is verbatim:

My mom’s started working on tongue and swallowing exercises so she can hopefully speak and eat again soon. It’s looking like she may be going home sometime in the next few weeks, but nothing’s set in stone.

 

The original plan was to wean her off the ventilator, but instead she’s going to have a ventilator for home use. At this point, we’re just waiting on the ventilator to ship out and for the doctors to train the family and her on home care. She greatly appreciates all the friends and family who have visited, sent cards, donated meals to the family and prayed for her throughout her long hospital stay.

 

She’s in good spirits, and she’s excited that she may soon be coming home.

Tongue exercises

I know from friends there locally that Donnie is tirelessly at her side, she is his whole world. A local church is providing some meals and Donnie was able to get out to a ball game a few weeks ago.

Keep Susy and her family in your prayers and if you’d like, you can send cards to her at her home (not the hospital as previously posted):

Susy & Donnie Miller
1109 Grinnell Court
Lewisville, NC 27023

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“Should you be doing this?” was answered with “Oh yeah, just as long as my doctor doesn’t know.”  Um, Susy, this stuff is on Facebook… which pretty much removes any semblance of ‘secret.’ She just smiles.

  [See image gallery at susymiller.com]

For the record, I was extremely against her desire to go down the lazy river at the Hyatt Coconut Plantation where we were staying. I was pretty much completely overruled since I was outnumbered by people of weak personalities who were easily controlled by Susy’s very strong personality (sorry ladies, it’s the truth). I did agree to take photos so that it was on the record (in case there was an inquest) that I had no hand in this exercise other than documenting it. (I am from four generations of NY lawyer, so genetically I was compelled to put that in writing.)

Thankfully she had help from a vacationer who was nearby and saw what was going on. After helping get her from her wheelchair to a dingy, he then stayed and walked her around being support on one side with Carrie on one side and Donnie in back. Susy completely charmed him. So, A BIG HUG and thank you to the New York City fireman from the Bronx who supported and entertained us during (for me at least) this stressful exercise (woot! woot! FDNY!) and then disappeared afterwards before we could buy him a drink. That is him in the first photo (in front of Donnie).

Oh yeah, did you know how fast her electric wheelchair goes? Well we do now… yes that is a busy mall parking lot. It started with her desire to overtake everyone in a ‘race’ that was in her head only. She topped it off by doing figure eights to show her prowess. I did videotape it so if she got hit, I’d have vehicle info. I added the music because this is pretty much her attitude in a nutshell.

Thank you Susy and Donnie for inviting me to your vacation and a glimpse into what constitutes your life now. I can only hope that I would face the same challenges with a tenth of the grace and humor that you show. (Of course your mind might also be going and no one around you knows how to say no… because you are a woman who never took “stop” or “no” as a serious command.)

Love you!

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We’ve raised over $100 million since I made the video but we have to keep this going to raise more money to open more ALS centers around the country  There are places where people have nowhere to go and this money will really help clinics and centers.

The video is long but I wanted to spread awareness about what ALS is and what is does. PLEASE SHARE THIS POSTING to raise awareness and keep.  Donations made to ALSA.org

I nominate Warren Buffet, Lewisville Mayor, Dan Pugh, and Winston-Salem Mayor Allen Joines.

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