It’s a little dusty

I feel like there’s been a big elephant sitting on the blog and I’m going to talk about it.

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About two months ago, I wrote about how we were going to Georgia to attend a healing conference in hopes that Reagan would be 100% healed by God. Well, I didn’t make a huge announcement about Reagan being instantaneously and miraculously healed so I gather anyone who’s a regular reader here kind of figured it didn’t happen.

But God did show up. My mom was healed of arthritis in her hands and she felt so guilty. “That’s not why we’re here,” she told me with tears in her eyes. But who can say “no” when God’s working a healing? She used to have to use two hands to move her gear shift in her car, but now she doesn’t have to.

A lot of people prayed over Reagan and got to hear her story and listen to the many miracles God has already done in Reagan’s life. It was an awesome trip. Reagan did amazing enduring such a long car ride with NO accidents for a newly trained potty user. We were so proud of her. We had the most amazing group too; if we had to do it all over again, knowing that Reagan wouldn’t be miraculously healed, we would 100% do it again. It was one of the best trips we’ve had as a family since Reagan’s crisis. Of course we were disappointed we didn’t have the exact result we wanted, instantly, but we were obedient in going…God’s ways are higher, we just have to take the steps he asks us to.

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New things

Reagan started a new therapy that another GA-1 mom recommended and I have to say it’s pretty incredible. I don’t think I will be able to explain it succinctly here on the blog, so here’s a link, but I’ve seen actual changes in Reagan at therapy, during therapy, and following therapy. For instance, she lost her balance, balanced on one leg in a cheerleading like move for about four seconds, and then repositioned her hips and body to continue walking. The therapy is supposed to help organize connections through out her body to her brain, which in turn would help everything, eating, talking etc. Other improvements we’ve seen is her ability to self feed, and a little more vocalizations/verbalizations. The other day she walked into our room when she woke up, went to Rob and said Dada, and bathroom. We thought we were dreaming, but we both heard it. Rob and I drive to Melbourne, FL for the therapy, since that’s where the closest person who does it is located, and we do two, hour long sessions in one day, broken up with an hour in between for a break. We are very excited for what’s to come.

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The other thing we are looking into is a brain plasticity center here near UCF, here’s their information. I’ve been in communication with Reagan’s Dr.’s about it and recently attended a lecture by Dr. Antonucci to learn more information. From my discussions and emails with the center and the Dr.’s it seems this could be a valuable treatment for Reagan. They focus on exercising the brain to help stimulate the brain and I’ve posted a video below to help you understand what they do. The lead Dr. at the Brain Plasticity Center, studied under Dr. Carrick for two years and brought what they do, here to Orlando.

The cost for treatment is expensive, $7,500 for one week of treatment. Treatment includes three therapies a day for five days in a row. We are working toward pursuing this treatment for Reagan, and have updated our fundraising page for this particular therapy, and we would like to do another auction. If you’re interested in participating in another Love for Reagan auction, please comment on this blog and I will follow up with you so we can start putting it together.

That’s all we’ve got. Thank you for following and for your support. It means so much.

xoxo

A Reagan Re-cap

We have some new visitors to the blog, FB and Instagram pages so I wanted to give a quick update and overview of why we’re doing these auctions and what GA-1 is and how Reagan has been affected.

Reagan has Glutaric Acidemia Type 1 (GA-1), a rare genetic disorder that was found on her newborn screening. GA-1 requires a strict diet and medication to help keep the amino acids Lysine and Tryptophan at lower levels. Reagan needs lower levels b/c her body does not metabolize these acids quickly and they can build up to harmful levels in her brain, causing seizures, brain damage or even death.

When people who metabolize normally get sick, their body breaks down proteins to fight infection…when people who have GA-1 get sick, their body also breaks down these proteins, unfortunately, the amino acids Lysine and Tryptophan don’t leave the body quickly, they stick around and build up. When Reagan gets sick, the protocol is a different formula recipe for sick days, and up to 8-12 additional fluid oz. a day to help flush things through. If Reagan can’t keep fluids down, we are hospital bound for IVs, Sugars, Glucose, etc. Her body needs something else to break down instead of the proteins she already has, like from her muscles.

The reason we are on our second auction for Reagan is b/c she did get sick, she did have seizures, brain damage and what the GA-1 community calls a metabolic crisis. The first illness Reagan had was RSV, it put us in the hospital for eight days. When we were discharged from the hospital, we were back in two days due to a metabolic crisis. Reagan collapsed and was essentially immobilized in a nanosecond. The scary thing is that even when the protocols are followed perfectly, nothing is 100% certain or preventative. Nothing in life is, really. And while Rob and I are so extremely grateful for the donations, for our friends who have set up these auctions and for all the money that’s been raised for Reagan, it reminds us of why we have to do this. I frequently think back to our hospital visits earlier this year. They were life changing moments.

Birthday buddies
First hospital visit for RSV. Spending my birthday in the hospital. Before her metabolic crisis.
Reagan hooked up to an EEG. There are about 50 wires under her cap
Second hospital visit, April 2014. Before we knew the results of Reagan’s MRI.

In the hospital, two of my closest girlfriends watched Reagan have a seizure. I recently spoke with my friend Laura and she revealed to me how it was the scariest thing she’d ever watched. She watched both Rob and I in fear, watching Reagan…she watched Reagan and feared for her life. We all did. We did not know that April 8th would be a line of demarcation in our lives, pre-crisis and post crisis.

The crisis took Reagan’s ability to crawl, walk, eat, swallow…it took away her muscle tone. We learned that muscle tone is not a strength or work out thing…it’s a neurological thing. Due to Reagan’s entire basal ganglia being damaged by her metabolic crisis, her motor control and muscle tone were lost. Rob and I had ZERO hope when we left the hospital. The neurologist told us Reagan would never smile, walk, talk, eat and that our job was to just “make her comfortable.” It was the most devastating time of our lives. Rob and I will NEVER forget the things we were told, how we felt…there’s even a particular smell that the hospital has and it reminds me of that time. The memories and feelings are forever seared onto us.

Due to Reagan’s brain damage, she also developed a movement disorder called Chorea, which causes involuntary movements, more commonly found in Huntington’s patients. Reagan is on medication for her movement disorder and she has greatly improved.

Reagan has improved in MANY areas. She’s cruising, crawling, standing and eating and drinking a little by mouth. That’s due to prayer, therapy and mediations. We pray A LOT! And we believe that God is doing his thing and being the Great Physician that he is…he’s not bound by earthly knowledge like that neurologist who said Reagan would never do any of these things. He made Reagan and he knows how she works. And God has given us hope to hold on to b/c we have been told over and over by the medical community that Reagan is making incredible strides and that she really shouldn’t be able to do a lot of what she is. The only explanation is G-O-D (are you with me?).

The auctions sprung from our insurance co. denying therapies after they approved them. Through social media, this blog and our friends hounding our insurance co. on Twitter and FB, our file was escalated and they found clear evidence that we were indeed told Reagan was to receive 272 therapies through the end of the year (not just 30…you need a bit more than 30 to recover from a traumatic brain injury).

{Read the insurance blogs here}

We’re quite certain an angel was working the day Reagan’s therapies were approved. But next year, they have let us know we will not have the amount of therapies that were approved this year and that’s why we’re raising money.

So now you’re up to speed on why we are having the auction…it starts TODAY here at 8 p.m. EST.

And unfortunately, Reagan is not feeling well today. She’s got a slight fever and is pretty congested. When she gets sick, it takes me back to the worst times of our life, spending those two weeks in the hospital for her metabolic crisis. The difference with her being sick now vs. then, is now she has a G-tube so we can get all the fluids we need to into her, as long as she keeps them down.

pool happy smile
I make G-tubes look GOOD!

If you could pray for Reagan to feel better, to not have another crisis or seizure we would be extremely grateful. And please check out the auction and bid…it’s for an amazing little girl. Thank you!

NFL & MLB Stars; Former UCF Players Give Back

I am super excited to write this update. After the Humana situation, our friends organized an Instagram auction for Reagan to help us cover the cost of her continuing care. The auction was a huge success raising over $1,800, not to mention close to 400 people learned more about Reagan’s story and we upped awareness for Glutaric Acidemia (GA-1). The bidding was fun to watch and people were…umm…spirited about the items they wanted to win.

But our friends weren’t satisfied to stop there…through connections with UCF athletics, former UCF players were getting a friendly tap on the shoulder asking if they would be willing to help. Many former UCF players who were contacted either donated to Reagan through the fundly site, or provided signed memorabilia for our upcoming auction.

I cheered for UCF…I LOVE UCF. Rob and I met at UCF…it’s where we share so many amazing memories. And it’s extremely humbling for Rob and I to receive items from our fellow alma matter as donations for our little girl. Rob and I continue to be blown away by all the people who want to love Reagan. The love this little girl has from not only Rob and I, but from our friends, family and complete strangers is so incredible.

As word continued to spread some major league baseball players wanted to pitch in too ← see what I did there?

For many years as a kid, my Dad and I went to spring training games and I’d try to get signed baseball cards…it’s a memory I will always cherish. 
AM getting stuff signed
who could say no me? side bangs and tie dye = winner! #90s #bravesglorydays

And, seeing all sorts of signed memorabilia come in from professional players with the NFL and MLB brought up memories of when I was little and these larger than life athletes would take the time to sign a card or a baseball. It meant a lot then, it means even more now.

In order to facilitate the love_for_reagan sports auction, we will be using Ebay to properly track the bids and timing; a link to the Ebay site will be provided once all items are listed and reserve prices are determined. Below are some of the auction items, many with UCF connections. Again…Rob and I LOVE the UCF community. We love that these players are willing to give back and we love how much Reagan is loved. She is loved so much, not just here on earth, but by our Heavenly Father above, who continues to heal her, provide for her and give her abundant life.


#UCFlovesReagan

-RARE opportunity (Never for sale) 2 Sideline Passes for UCF conference game

-5 UCF FOOTBALL “A Season to Remember” Books


#NFLlovesReagan

-Blake Bortles (Jacksonville Jaguars) signed Jags jersey

-Brandon Marshall (Chicago Bears) signed NFL football & two signed cleats

-(1) Aaron Rodgers & Packers Offensive Line (Josh Sitton, UCF) signed football and (1) Aaron Rodgers & Packers WR’s signed football

-Several NFL SuperBowl XLVIII Footballs & NFL Cutter and Buck SuperBowl XLVIII jackets

-Various Signed Football Trading Cards


#MLBlovesReagan

– MLB bat signed by 2013 World Series Champion Daniel Nava (Boston Red Sox)

– MLB bat signed by 2013 World Series Champion Will Middlebrooks (Boston Red Sox)

– MLB baseball signed by 2013 World Series Champion Daniel Nava (Boston Red Sox)

– MLB baseball signed 2013 World Series Champion by Alex Wilson (Boston Red Sox)


#TimTebowlovesReagan

A sports auction wouldn’t be complete without an autographed 8×10 signed by the beloved UF Quarterback, Tim Tebow


Many items for auction will be uploaded to preview on the #loveforreagan Instagram and Facebook page throughout the week. Bidding will begin once items are released onto the #loveforreagan Ebay page beginning Sunday, Sept. 28 at 8 p.m. EST. The auction will run for one week before bidding closes or a “buy it now” purchase is made. Help spread the word!! The #loveforreagan sports auction is coming soon!!

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