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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Results

We received Reagan’s EEG results on Thursday.

NORMAL!!

Her Neurologist was so pleased. No seizure activity at all…he said that’s either due to her brain normalizing and calming back down, OR the medications are working so much that no remnants of seizure activity can be detected. Rob and I truly believe it’s our Great Physician who is healing and continuing to heal. B/c even being on seizure meds, you would still be able to see seizure activity, and then just realize that the meds were working. And the EEG was completely normal.

Every day with Reagan is getting better. I had a friend tell me that although she reads the blogs, she still wanted to know how we were doing. I told her that five months ago, neither of us wanted to get out of bed. I didn’t want to face the reality of my life. But today, I can embrace it. I can embrace the fact that I have a special needs daughter, who is making incredible strides and blowing everyone’s minds. But, that does not come instantly.

Going through anything traumatic requires time to process, grieve, heal, etc. I don’t think we’d be very honest with ourselves if we just carried on as if nothing changed. These little victories, which are really HUMONGOUS victories, like normal EEGs are only b/c we are praying, you are praying and God is healing, not only Reagan, but us.

We can feel God hanging out in our house more than ever, likely b/c we’ve invited him constantly as we realize how much we need him. Whether you know it or not, all of our lives hang on a thread that is tattered…one move can break it. The fragility of life is much more evident to us now, and it’s why we have chosen to live more intentionally for God. Things that mattered before aren’t as important now. All that to say, we are very thankful to serve a God who wants to be involved in every facet of our lives, if we’d just let him. He’s in our living room, in the kitchen sitting next to Reagan in her high chair, helping her swallow food and drink water.

Asleep

He’s in her room, healing her when we’re all sleeping and one day, we’ll meet him and thank him for all he’s done. Not only that, we’ll be completely healed, physically, emotionally, mentally…we’ll be whole.

PSA to Parents on Compassion

Today at therapy a little girl, about five years old, walked by Reagan as she was in her walker and pointed and laughed at her. It was quick, it was as she passed by. And the little girl was being led out by her therapist to the waiting room to whoever was there for that child. The irony is, that girl is in therapy for something she needs help with….just like Reagan. Maybe she’s been laughed at, I don’t know.

Initially when she pointed and laughed, I thought to myself, “oh..she’s young, she doesn’t know any better.” But I was wrong in that assumption. She should know better…is it possible her parents haven’t taught her compassion? B/c let’s be honest parents, compassion is a learned trait, and it’s taught by YOU.

It was my first glimpse into how other children, who are not kind, may act toward Reagan and as I continued to think about it…all this righteous anger started boiling up within me. As I replayed it in my mind, part of me wanted to unleash on the five year old and whoever was poorly parenting her (see what I’m talking about…I was getting seriously ticked off just driving and thinking about it). But, I know that’s not the right thing to do.

This short five second interaction (which Reagan didn’t even know happened) made me wonder how Rob and I would handle these inevitable situations. And that’s why I have a PSA for you today. B/c when we encounter this rude behavior down the road, I’ll have thought about how to react for a looooong time. Hopefully it comes out pleasant, but I can’t make any guarantees.

So, when your child sees another person in a walker, or in a wheelchair, or struggling in ways they don’t understand, take a moment to talk with them and teach them about compassion.

What that little girl was pointing and laughing at, was Reagan doing this.

Do you think this video is funny?

If you’ve been following Reagan’s story, I know you find it awesome. If you know Reagan’s story, you know that she endured a traumatic event that altered the course of her life. You know that seeing her in this walker is her thriving and is her overcoming a thousand things the Dr.’s said she would never do. So, talk with your kids about what it might mean for a child to look different, and why it’s important to still cheer them on, still smile and still say hi. You teach your kids it’s WRONG to laugh. You teach your kids it’s WRONG to point. Do you want me to take my finger and push it into your chest and ask you what’s WRONG with YOU as a PARENT for not instilling compassion, let alone common courtesy, into YOUR child? I promise, you don’t want to have that conversation with me. B/c guess what I’ll be instilling into Reagan during an interaction like that? I have your back, baby. I have your back forever and for always and you can count on me.

View More: http://dearlyphoto.pass.us/wurzelfamily2014
don’t mess with my baby

Teach your kids how to be kind and how to be loving to other kids who are differently abled, they could even be friends with them. How your child acts towards kids like Reagan is a reflection of you…just remember that.

//end rant//

Update: Through dialogue brought about by this blog, I’ve learned that there are diagnoses on the autism spectrum that could explain the little girl laughing inappropriately. Further, many other children could struggle with things that I’m not aware of, and even though it would have been helpful for that girls parents to have been there to explain/apolgize, it’s not really necessary. I also need to exercise compassion and understanding. I know bullying and insensitivity could be part of this road we are on with Reagan, seeing it aimed at her, being that she’s so young, was tough. And yes…I am a big mamma bear. But I can still learn, still admit that I could have given more understanding and compassion and I am thankful that positive dialogue was brought about. As one person said, that this blog “conversation leads to awareness which leads to understanding and acceptance.”

EEG are you with me?

On Thursday Reagan was scheduled for a 24-hour EEG. Rob and I had been dreading it ever since it was scheduled. So much so that we rescheduled it for a later date. But Thursday finally approached and we geared up to go. We brought the bouncer, the pak and play, her high chair, a million toys, movies, books, the laptop, the iPad, towels, sheets, a comforter, pillows…I mean, we were ready for anything.

photo 1
you drove me to do what?!

We see what I consider to be the BEST pediatric neurologists in Orlando, but their office is straight from the 70s and doesn’t seem to have changed since built. Rob and I said if the EEG place was like their office, we’d be leaving. We got there and the room they put us in originally was SO small, and paint (probably from the 70s…can we say lead based?) was peeling off the wall. The tech said, “how’s this?” I mean, the look on our faces seemed to be conveying “are you kidding me? there’s paint peeling from the wall,” even still, it was about one step above the Dr.’s office so we said, “I guess this will have to do.” But then they made us an offer for a room down the hall that they said was the same size…it was significantly larger. We took that room, and the paint was intact.

I confirmed with the gal checking us in that the EEG techs would not be doing the lights and strobes that they did in the hospital to invoke a seizure. She said the would be and I said, “Nope, you won’t.” We had discussed this with our neurologist and per our discussion previously, he did not want to do that sort of test on Reagan. I think it’s pretty common for there to sometimes be a disconnect btw the Dr. and where you might be having a test or procedure. What Rob and I have learned is to confirm what you know is supposed to be happening AND, if it’s not right, you let them know how it’s supposed to be, or leave. Reagan is our daughter and we are giving you permission to do certain things, but not everything.

While putting the sensors on Reagan’s head, the tech asked why we didn’t want to do the lights, and I told her b/c we didn’t want Reagan to have a seizure. She said, “well that’s what you want, you want to see if she’s having seizure activity, that’s the point of the lights.” Maybe she didn’t understand that we didn’t want to put Reagan through having a seizure…I looked at her straight in her eyeballs and said, “that’s what we’re trying to avoid…we don’t want her to have a seizure,” she shrugged like that was a dumb decision, but Rob and I both know it was the right decision for Reagan and for us.

So…after 20 minutes of Reagan crying and looking at me with eyes that said, “please SAVE me!” she was hooked up and we were linked together in a 8 x 12 room for 24 hours.

photo 3
guys…i’m watching my shows.
photo 2
we played a lot of defense. a lot.

Reagan actually napped for an hour and a half which was a pleasant surprise. For reading an EEG, you definitely want awake and sleep time so we were happy she gave them (but really us) a nap so early on.

IMG_1279
of all the toys we brought, this IV pole that we use for her feeding bag and pump was her favorite toy. Maybe it’s b/c it’s fancied up with braids, I don’t know. We got a compliment on it…a compliment on our IV pole. Those techs have to get out more.
photo 4
Rob giving this EEG a thumbs up.
photo 2 copy
yes, there is an outfit change…diaper disasters when your daughter is hooked up to 30 wires are super fun. #bohochic #eeg #swag

But seriously, you can’t appreciate the hours of entertainment the IV pole provided until you watch this video.

Onto another topic, the food situation. The EEG place provides food for you, if you want it, which I think is incredibly nice and generous. But I did feel like were were in a teen lock in. When have you ever seen so much junk piled into one kitchen?

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moon pies. I can count on ONE hand, the people I know who like moon pies.
IMG_0116
the lunchable situation was out of control. An entire shelf dedicated to Rob Dydrek and his lunchables.

IMG_0120 IMG_0121 IMG_0119 IMG_0118 IMG_0117 IMG_0115
I know why there’s so much chocolate and carb filled stuff…you are in a square cage, willingly, and there are certain things that will allow you to survive and that’s what the kitchen was stocked with. I had chocolate wafers, an ice cream drumstick, Doritos, soda…survival was paramount and these items are part of your survival kit. Along with both Rob and I making separate trips to Publix. Fresh air is also important.

When 7:30 p.m. came and Reagan went to sleep, we were shocked…we did it. She’s asleep for the night, we made it. It was such a feeling of accomplishment. It lasted for three and a half hours. I had to sneeze…I sneezed three times, right around when it was time to feed Reagan at night, and that was it. She cried through her feeding for an hour. She was HOT, the room had to have been 78 degrees even with a box fan in there, plus she had a wrap on her head. It was uncomfortable, unfamiliar, and maybe even kinda scary for her. Around midnight, I went up to the desk and said we wanted to leave. The tech obliged…there was no discussion she simply said, “Ok…I’ll be right in to take the stuff off her head.”

Reagan was so sweaty under that cap. And she was SO happy to have it off.

photo 4 copy
time to go home…we made it 16 hours.

Here’s what Rob and I discussed about not making it the full 24 hours. We succeeded. Sure, it’s ideal for the Dr.’s to do a 24 hour EEG. Why? Well, that’s what they say they prefer. We did our best. The EEG saw play/awake time and sleep time brain activity. At the end of the day, we are Reagan’s Mom and Dad and if we say the test is over, it’s over. We learned that in the hospital when she had two tubes up her nose, one was testing for reflux…they wanted that to be 24 hours too…but at around the 20 hour mark, she was done. It’s Ok to read your child’s cues and take action on their behalf. That’s how you advocate. It’s OK that we made it 16 hours for the EEG and not 24. She gave them 16 good hours…we didn’t need to force her to give them a miserable eight additional hours.

Not only are we learning Reagan, she’s learning about her parents. She knows that sometimes we take her to appointments and tests that she doesn’t like, but at the same time, we know her limit and will listen to her over a Dr.’s ideal scenario.

I have never seen Rob pack a car so swiftly. And when Reagan got buckled into her car seat, she gave a huge sigh of relief. She was even happier at home and elated to have a bath, even at almost 1 a.m.

She did great, we did OK. So glad it’s over…we don’t know the results of any of it, but are praying for normal brain activity. I’ve been praying lately for more talking and babbling, and God has been answering that prayer, just like he answered our prayers for Reagan’s body to begin working as intended in regard to eating, swallowing, etc. She hasn’t vomited since 8/20/14 and has been eating pureed foods and drinking water (sometimes formula) consistently. Thank you Jesus for getting us through difficult days and giving us brighter days.