Fundraising – Plasticity Brain Center

We are so very excited to announce that the Plasticity Brain Center is offering a discounted price for one week of therapy for Reagan and for Brian.

For coming in second, Reagan will be able to attend for $1500 and Brian will be able to attend for $2500.

In speaking with the center, we’ve been told people have actually called them offering to pay for Reagan to go. This is truly amazing and so very kind. We’ve received a lot of positive feedback about helping both Reagan and Brian to attend so we’ve come up with a few ways you can help with this.

Reagan signing I love you.

Here is a link to the gofundme for both Reagan and Brian to attend a week at PBC. I think this is the best way to donate for both of them. 

But Rob and I don’t want to stop there. We want to help create a scholarship for other people in need of receiving this therapy and we’d like to lessen the financial cost of this truly amazing neuroplasticity therapy.

After speaking with PBC, they aren’t able to hold donations or a scholarship themselves so we’ve come up with THREE ways to donate based on the messages we’ve received :

  1. GoFundMe
  2. Venmo – @Anne-Marie-Wurzel please put #PBC in the memo so we can track this
  3. I’ve received several requests to mail a check for Reagan’s therapy. To do so, please make check out to Reagan Wurzel.
    MAIL TO: The Wurzel Agency | 1942 W. CR 419 | Suite 1000 | Oviedo | FL | 32766

In addition, my coworkers and business partners have expressed an interest in holding a dinner and we will post information about that when it’s available. Honestly, the outpouring to help is beyond amazing. I have no doubt we will raise more than what is needed, which is why we intend to create a Love FROM Reagan scholarship.

When Reagan had her metabolic crisis, a group of girlfriends created Reagan’s Instagram and called it love_for_Reagan. Now, it’s time for us to send love out FROM Reagan and that’s what this scholarship for PBC patients will be called. There are so many deserving of receiving this treatment, and it’s our goal to help them attain it.

Thank you for all the love. We are so grateful.

Taken

When everything is taken from you and your normal is shattered, it’s impossible to know where to start to put the pieces back together. Especially at the beginning. Once you begin getting the shape of your new normal, a piece falls off. Maybe it wasn’t meant to stick. Maybe the glue that was holding it together was weak. Maybe it was supposed to happen later, or never at all.

So you try to fix it, but then the hassle of making it fit your way is too much. You leave it behind.

And you journey on. Hoping to find a new thing that will help to shape and heal. The goal is always to restore what was lost.

When your world is upside down, you’re exhausted and determined.

Relentless. Unyielding.

This contest for a free week at the Plasticity Brain Center is that relentless pursuit. Everyone I know, and people I don’t who have watched Reagan’s story for five years are voting and sharing and pleading.

And.

I see another mom fighting for her daughter. Every family member, every friend, anyone who has heard of their story is in pursuit of this one thing. Seeing our children plateau is not an option.

The thought of it not coming to fruition is too much to bear. For her. For them. For me. For Reagan. For us. For everyone who is voting. Everyone is taking this on.

You see, the thing is, when something is at your fingertips (and I know this contest isn’t over yet) you can’t bear to have it slip through your fingers. You already experienced that when the traumatic thing happened. Everything slipped away. And you and everyone you know is bound to never let that happen to you. Not this time. Not again.

And that is why, whenever this contest is over, no matter who wins, Rob and I have decided, and it was confirmed through another friend, that everyone should have this opportunity.

Last time we went to the Plasticity Brain Center, we fundraised. Fundraising and asking for monetary help again, well quite frankly it can be exhausting. The truth is, while so many continue on a normal path, as they should, we are still fighting the fight we were given five years ago. We’re working on talking in sentences, riding a tricycle, eating more diverse foods. I’m worrying about Reagan having friends because talking is difficult. And this other mom and family, she has worries she never thought she’d have to face and choices and decisions and medical expenses.

|Side note| The NFL draft and all the inspiring stories of these children who fought adversity and now as adults can talk about their journey to the top, it’s incredible.

Reagan at UCF. #futureknight

That’s what I want.

The other night I cried watching one of those SportsCenter stories, wondering if there would be this amazing overcoming story that Reagan will tell as an adult. Like when she can actually use her words and say, “My Mom and Dad, were relentless in their pursuit of my recovery and because of them and everyone they knew, and even through the generosity of strangers, I can stand here and talk. I can stand here and, you name it.”

Reagan doing Special Olympics Young Athletes

Sunday night, a friend emailed that she and her LuLaRoe consultants would fundraise for the two finalists who don’t win. My goodness, as of this writing, there are 20,000+ total votes. If everyone gave $1, the two remaining finalists could attend this amazing therapy, FOR FREE. She reminded me that generosity never ends and that’s because love never fails. So as we are crawling, there are those who will say, “take my hand, let’s keep going.” And that willingness to hop alongside, to run a race they weren’t given, it blows me away.

When this contest is over, we will share the fundraiser. And perhaps, any additional funds raised over the cost for two people to go, we can start a scholarship at the Plasticity Brain Center for people who desperately need the care, but are unable to afford it.

I’m reminded of the amazing people in my community, people I know and people I don’t. And I’m thankful.

O-H-I-O

Recently we took Reagan to a new neurologist in Columbus, OH, at Nationwide Children’s Hospital. The neurologist specializes in pediatric movement disorders and was recommended to us by Reagan’s first neurologist, who we absolutely loved and have missed terribly.

It was a big deal to go to Columbus. We had to fly AND connect in Atlanta, which was causing me a ton of anxiety. I was worried about what going through security would be like with her medicines and formula – and what it’s like – is a guaranteed full body pat down of either Rob or me. Her meds are all liquid, all above the max amount you’re allowed to have, and her formula caused alarms to go off, totally comforting that she drinks it, but TSA did not approve it and it had to go through additional testing.  We made it through though, and connecting in Atlanta, while adventurous, was a success.

Rob and I ubere’d for the first time (I know we just stepped in to 2010), it was awesome. We stayed in the Ronald McDonald House (RMH) and evidently the Columbus location is the biggest RMH in the country. That place is a GOD send when your primary purpose is Dr. visits, surgeries, etc. Being able to cook for Reagan, and have meals provided for us, allowed us to focus on the task at hand, which is exactly what we needed, and what all families need who are treading through challenging medical issues with their children. Plus meeting and talking with other families who “get it” is really very comforting.

Reagan hanging with her new baby doll.
Reagan was a fan of Ronald McDonald. She would hop up and give him a hug every time.
Playground on site of RMH.

We flew in Monday, and Tuesday we grabbed one of the many wagons in front of the RMH and strolled Reagan and her Tupperware of medications across the street to the hospital for our appt.


The hospital was massive and was comprised of multiple connecting buildings that took up quite a few large city blocks. Just to give you an idea of the scope of the hospital, there are THIRTY pediatric neurologists on staff, compared to here in Orlando, Nemours and Arnold Palmer Hopsital probably have a combined 8-10.

This photo doesn’t do the hospital grounds justice, it’s about five city blocks with parks mixed in between the buildings.

And guys, this neurologist…he spent an hour and a half with us. He clearly planned to meet with us for a while and was grinning ear to ear upon meeting us. He kept saying how excited he was to have her and us in Columbus. He wanted to hear everything from the beginning and took copious notes and a video of Reagan walking, and of her answering questions we asked.  Rob and I joked that Dr.’s break out the video camera to take patient notes when they can’t believe what they’re looking at. I again asked, as I do of any neurologist who can read Reagan’s MRI: “her entire basal ganglia was damaged, right? I mean, I’ve been told that for three years, you also agree?” He said “oh most definitely yes”, and that she was truly a miracle, that she would never be this far along if not for us, and God. He continually lit up watching her and marveled at her progress as we chatted like we had been friends for a long time.

Our intention in going to this Dr. was to get a long term plan for Reagan. He was really delicate in managing our expectations saying that while Reagan has seen remarkable progress, there isn’t a “medical fix” to her issues. She has a lot of things to overcome, the brain damage is extensive, which we know, her movement disorder will be a life long challenge, but the Dr. and our family are forging a path together to help better Reagan’s life. Our specific plan currently, is to wean Reagan off one of of her medications. She’s on a powerful dose, and in doing the math, if we see no complications or hiccups in weaning her off, it will take a year and a half. The Dr. felt all her meds were the right ones given the history and her progress, he wouldn’t have done it different, but after three years and the progress Reagan’s displayed, we were all in agreement to start the process of weaning on one particular medication.

So that’s the latest update. We are really excited for what Reagan’s future holds and how this Dr. is now part of Reagan’s team. I have to say, Columbus will certainly hold a special spot in our hearts…the trip was more than we could have hoped for. 

Beauty From Ashes

Well November flew by! We stayed super busy and so much happened, I truly don’t know how we’re at the end. Below is as concise of an update as I could fit in. As always, thanks for your prayers and continued support!

Brain Plasticity Therapy

This is a biggie. I know a lot of you were closely following Reagan’s intense therapy sessions at the Plasticity Brain Centers here in Orlando. She did three, hour long therapy sessions for five days in a row to work on strengthening the weaker or more immature areas of her brain due to her crisis. Through a series of exercises, we were able to see amazing improvements. For instance, the light board that she worked on — the first day when she came in fresh, she averaged about five seconds in between each light she hit. By day three she improved almost 50% and by the last day, she improved 58% since day one.

Eye contact – her ability to maintain eye contact really improved. After a visit to her eye Dr., he said she still needs to wear her glasses, and she’s still far-sighted, but our hope is that with continued exercises at home and patching her right eye, that her left eye will gain strength. Either way, she looks so cute in those pink glasses!

Talking/Communicating – this is the area that has taken the longest to come back since her crisis. Since therapy, we have seen an increase in her wanting to try to talk more and we are able to more clearly understand some of the things she says. While at therapy, I asked if she wanted to do something together and she said, “together”. The other day while watching one of her favorite shows, Daniel Tiger, one of the characters said, “I like purple”.  Since this is Reagan’s favorite color, she looked at me, pointed to herself and said, “I like purple, too”. In addition to that, one morning (after a 4 a.m. wake up call) Rob decided to take her to breakfast so I could sleep. He asked what she wanted and she said, “aahh-ffull” for Waffle. Funny that it sounds like awful, because that wake up time is definitely awful. She also said “Mr. Craig” when she recognized the Dad of one of our nannies. Santa has also been a favorite word lately. She says “Anta” and then gives herself a hug…because she wants to give Santa all the hugs. And Reagan has made it super clear that she wants Daddy to take her to see Santa, not Mommy. I’ve asked a bunch, definitely Daddy, not Mommy. At least she’s consistent, and she’s a total Daddy’s girl, which is so sweet.

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Santa 24/7. She’s a helper elf, too.

Eating – We’ve seen huge improvements here. The volume of food she’s consuming is awesome. At the Waffle House she ate 42 grams of waffle. I know 99% of you reading this don’t weigh your kids food…if you do, you’re part of my GA-1 FB group, but that’s a lot of waffle for Waffle House for Reagan. It’s probably a third of a waffle. She’s eating full servings of potato pancakes at a local restaurant in town, she ate stuffing for Thanksgiving and this morning she ate a quinoa breakfast pattie WITH a waffle on the fork. I mean, that’s weird and awesome, I’m so proud of her.

Textures – Guys, the sand and salt water used to literally make Reagan vomit. If it got in her mouth, she would start retching and lose whatever she ate earlier in the day. She hated being in the sand. But now, I can’t get her down to the beach fast enough, and she digs and plays for hours. Four months ago we brought her to the beach and had to leave almost immediately, but now we can actually sit on the beach and enjoy watching our daughter play in the sand or in the ocean.

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Sleep – I mentioned that recently she’s ready to party around 4 or 4:30 a.m. That’s new…so we’re working on stretching that to when the sun rises at the earliest. Until then, we’re drinking a lot of coffee and headed to Waffle House evidently.

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Walking strong!

Orlando Ballet

Lastly, I spearheaded an amazing project with the Orlando Ballet, Nemours and Orlando Health. Below is the video in case you haven’t watched it.

After all of that, I really feel that this verse has been ringing true in my life recently. I’m so thankful that God is giving us beauty in place of the ashes, because for so long it felt like just ashes. I’m sure watching the improvements from the outside is amazing, and you can probably see more than we can on some days. But living in hard moments of loss every day can be tough. So for now, I will take all the beauty The Lord wants to give my family and I’ll pray for heaps more it it.

“To those who have sorrow in Zion I will give them a crown of beauty instead of ashes. I will give them the oil of joy instead of sorrow, and a spirit of praise instead of a spirit of no hope. Then they will be called oaks that are right with God, planted by the Lord, that He may be honored.” – Isaiah 61:3 (NLV)

Reagan is Going to Brain Plasticity Therapy!

This past Tuesday Rob and I toured the Brain Plasticity Center here in Orlando. We spent two hours talking with them and looking through their facility. It was so amazing to hear testimonials from the staff in regards to how some of their youngest patients have responded to this therapy. The best way to describe what this therapy is in laymen’s terms is that it’s physical therapy, for the brain. Through a series of exams, the Dr.’s can tell what side of the brain is weaker than the other, and what part of the brain needs strengthening.

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Truly this is a pioneering treatment for people who have had traumatic brain injuries. Dr. Carrick discovered and then created this type of therapy…within the past few years he received his third PHD at Harvard Medical School in medical research so he can continue furthering this type of treatment and therapy. Here in Orlando, Dr. Antonucci is the clinical director at the Plasticity Brain Center. Dr. Antonucci worked directly under Dr. Carrick as his right hand man and first assistant in treating patients for many years. These Dr.’s are trained, well educated and are changing lives. We are very excited to bring Reagan.

Recently I was able to speak with Jenna, she’s the mom of James, a young boy from South Florida who experienced a near drowning. I’ve been following her updates for a couple of years on FB, you can check their page out here. They recently took James to the Plasticity Brain Center for a second time this past month. Through our conversation, comparing our therapy experiences and gains for our children, she stated that taking her son to the Plasticity Brain Center has brought about the most significant gains in James. You can’t argue with that, with a family who like us, has gone to hundreds and hundreds of therapy and Dr. appointments.

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That is why we are asking for your help in raising funds for Reagan. After touring the facility, Rob and I determined we would schedule Reagan’s week of intensive therapy. We are scheduled for one week in November before Thanksgiving. We were able to proceed because of your help! Since posting our fundraiser, over $1,500 was raised in about five days, which was exactly the deposit needed to secure a week of therapy for Reagan. You guys didn’t know that, but we felt that was God giving us the green light to proceed. We know God is opening these doors and we are so fortunate to have this world class treatment and therapy center within 15 minutes of our home. We are having faith that the remaining balance will be provided.

There are four ways you can help:

  1. Donate here on our fundly page and help us reach our goal by November to pay for this therapy.
  2. Share on social media.
  3. Attend our painting fundraiser for Reagan on October 26. You can RSVP here and bring as many people as you want; 50% of the funds will be donated to Reagan
  4. Contact me if you would like to participate in an Instagram Auction. If you look at the love_for_Reagan instagram, you will see two previous auctions. One was an auction with handmade items and the other was a sports auction with memorabilia donated. We are open to all donations for the auction.

Sometimes I watch Reagan and just think: “You don’t know it baby girl, but we are fighting for you in so many ways. A lot of people are fighting for you, Reagan…and praying for you too. And everyone wants to see you succeed, everyone wants to see you talk, everyone wants you to prosper into one fiery and independent little girl. You don’t know it yet, but so many people, thousands of people, are a part of your story because they are rooting for YOU.”

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We are so thankful for you all, for your support, your prayers, your time, your donations. Everything.

xoxo