Six.

We don’t live too far from UCF and so we often drive through campus as a little detour when Reagan is sleeping and we need to kill time.

Driving THE campus brings me back to when I was a college student. You learn a lot about yourself when you’re away from home, trying to find your way. College is a place where you figure out how you want your life plan to work out, what your career will be…and whether that hottie named Rob can fit into the plan somehow 😉

Anyway, there’s sections of campus that have a lot of meaning. I remember cheer practice on the lawn in front of the old education building. I remember going to the old Wayne Densch building for FCA and meeting what would become my closest friends to this day. I remember going to the gym to impress Rob. He started this workout group called “early” for people in FCA…it was called early b/c we met at like 5:45 am (it was awful). I only went b/c Rob was there.

Watching the students walk about campus for class I reflect on how my life is so much different than I planned. I drive campus and those feelings of finding yourself come upon me. B/c you’re never truly done learning about who you are and what you’re capable of. I continue to find myself and learn what it means to be a mom and to be a parent of a child with special needs. I realize my biggest fear from years ago is here and that I’m capable of handling it, with God’s strength, wisdom and grace. I know what God says is true, “when I am weak…I am strong in him.”

“That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” – 2 Corinthians 12:10

Finding myself means going out with Reagan without fear…fear of judgment from others or fear of what being out among the people could mean to Reagan. God is in control of Reagan’s health, and Rob and I are good parents and protect her as much as we can while letting us all live life.

Earlier this week I took Reagan to the chiropractor and as soon as I sat down, I got her gtube connection and gave her meds and pushed formula into her while a lady just watched (tried not to stare). Reagan laughed as she threw things on the floor and the lady got them for her…one of Reagan’s favorite games. After Reagan’s appt, the lady said “keep up the good work momma! You’re doing great and she’s beautiful.”

I didn’t hide what being a mom to Reagan means, which is that she requires most of her food through her gtube.  Continually finding myself and realizing that I will need to do things like this out in the open…I am not ashamed that Reagan can’t walk and can’t drink all her formula . I wish she could do all those things, but she can’t, yet. That doesn’t change the fact that she’s my daughter and this is what it means to be a mom to her. Yesterday we went shopping…I knew I was gonna have to feed her while out and thought I might get looks of pity or long stares that say “what the heck?!” I’m sure that many families stay cooped up at home for all the same reasons of fear I have. I ended up giving her meds and food in the fitting room, behind a closed door so that I could more fully concentrate…that probably happens more than you think.

This is life, it’s our life and we’ve invited people into it through this blog to understand…and just b/c most of us are walking around the world in plain sight and look completely normal, doesn’t mean the people you see who look put together are free from having their own struggles. They can hide it, deny it or embrace it. The fact is, there is a struggle in everyone’s life.  No one gets a free pass to live problem free…this is the world after all, and it’s not perfect, it’s fallen.

Standing at 6 mo post crisis

Today is Reagan’s six month mark. It’s been six months since her crisis. It feels like so long ago, but also just like yesterday. We have struggled and cried and been beaten down; we wrote our own Psalms in our times of despair. We have also figured out how to chose joy, live even more vulnerably and embrace our new normal. It’s a challenge, it’s an adventure. It’s a scary, awful, amazing, tremendous and fun ride. It is all of the emotions of life. Six months ago I would have never imagined this progress and Rob and I are so thankful. We pray for more progress. For more eating, more talking, more walking. More, more, more…more.

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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