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.

One day until Surgery – 4 of 7

7/30/17

It’s one day until my surgery. This past week I’ve felt pretty good…the countdown was running in the background of my mind while I kept super busy with work, closings, showings, walk throughs, an EEG and a three hour pre-op appointment, not to mention the extreme patience often needed during Reagan’s v e r r r r y lengthy bedtime shenanigans.

As I sit writing in bed this Sunday morning at 7:30 a.m., I know that tomorrow at this time I’ll have an IV in my arm, maybe going to get a final MRI before I’m given anesthesia and am headed back for surgery. I know I’ll have a small posse of friends who want to pray over me before surgery. We’re all hoping and praying the surgery is successful (obviously) and that we get more confirmation it was the right move. We’ve been given confirmation over and over as we walk toward surgery day, I just feel so anxious thinking about being motionless in an anesthesia dreamland, while a crew in the operating room helps the surgeon with whatever he needs in getting a look at the lesion in my brain.

I’m thinking about when the Dr. comes out to give Rob the news, how he’ll feel, what will the mood be like…will everyone breathe a sigh of relief? I’m praying no terrible news has to be delivered, I pray the surgeon says, “we got [insert whatever the thing is here] and she’s going to be fine. she’s already waking up and acting herself.” I don’t want to give life to alternative scenarios.

Even as we walk through the valley of the shadow of death, we fear no evil, b/c God is with us. Right? I’m saying this to myself now…I was about to write even though we walk down this difficult path, we know God is with us. And then verses I’ve had memorized since I was a five year old kid overlap my earthly words and a higher way and thought supersedes my own.

As a believer, I am so glad and thankful that if for some reason things go unexpectedly, that I’m saved and loved b/c Jesus first chose me and I chose to accept his gift of life, salvation and eternity in Heaven. It’s a gift that we have to accept. I can’t imagine if I didn’t have Jesus, how I’d feel…death is not something I’m scared of b/c of the complete confidence I have in Jesus and in what he did on the cross. If you ever wonder where you’d spend eternity if you die, and you don’t have confidence in the answer, man…GET the confidence by accepting JESUS.

Even though for the last several years things have been really tough for our family and just the opposite of what we anticipated in our minds, I pray that we will come through this hurdle unscathed. And not that we are like Job from the Bible or anything, but we understand suffering, questioning, stomping our feet and ultimately surrendering to God’s plan. I know that if we continue to stick with God, he will reward us, whether here or in eternity. I have to believe it will be both…b/c even when Job went through everything, the last chapter of Job says, “The Lord blessed the latter part of Job’s life more than the former part.”

Maybe one day when Rob and I are 50 years old, we’ll look back on all the trouble we had to go through in our thirties and say, but man, look at what God did, look what he taught us, look how he restored Reagan, look how he moved us toward finding out about your brain when we should have never known. Now I understand…I know God’s ways and thoughts are higher than ours. What he knew was coming in our thirties, now we see here standing in our fifties. That’s why you stick when trouble comes, don’t run, lean in. Do the hard work, rewards are coming for your faithfulness. God has shown it time and time and time again over the course of thousands of years. I want to go with his track record for redemption and success, not my own. We’re sticking with God, with each other, forever.

~Brain Vibes ~ 3 of 7

7/24 & 7/25

I had a 24 hour EEG and decided to channel my inner gangster rapper.

We’re basically twins.

I mean, after all the emotional processing of this whole deal, if you can’t laugh, what can you do?

The purpose of the EEG is to see if any of my brain waves look weird or can explain any of the symptoms I’ve had. It won’t change the surgery or how the neurosurgeon will approach it, it’s just for info only and I have no clue when the results will be in. I feel like I was giving off a good vibe though.

When it was time to head back into public, I decided to take my wire style up a notch, with a man’s shirt and a beanie…in 95 degree weather. Truly making it work, folks.

My favorite part was trying to wash the glue out of my hair. I tried to find coconut oil in my house, it’s gone b/c I don’t cook and when I had the coconut oil I probably let it sit there for years and it expired long ago. A friend told me they used mayonnaise for lice and that worked…seems weird to take your squeeze mayo into the shower. So I opted opted for organic Trader Joe’s Spanish olive oil, it’s fancy and in a glass bottle.

Boy, if you were looking for a “how to get glue out of your hair from your EEG” you’ve just stumbled upon THE solution to help you with that.

Rub it in your hair like this.

Let it soak for at least 30 minutes. If you get a good Bravo show going, it might be able to soak for even longer.

Wash twice and then your hair is super soft and most of the glue is out so, Voila!

There’s just six days left until my surgery and lately I’m feeling pretty good about it. I continue to process how I think things will look after surgery, how I’ll feel, what the days immediately following will be like, but I don’t know and it’s all just speculative. I’ve always loved this verse but over the last 3-4 years I’ve learned how true Proverbs 16:9 really is. It says,

In their hearts humans plan their course, but the Lord establishes their steps.”

I’d add that even though in our hearts we plan a course, the steps the Lord establishes could be in the complete opposite direction of the course we wanted to be on. That’s been a theme in our lives for sure. But I know that even if life looks hard and things seem to be the opposite of what you’d want, that doesn’t mean you’re outside of God’s will for your life. God will place you right into the center of a storm, that is exactly what he did with the disciples, and that can be his divine will for you at that moment. Don’t be afraid of the storm, link arms with the One who can calm it. The one who can give you strength to endure it. The storm will not last a lifetime, I can promise you that. Seasons happen, some last longer than others, but the season will change.

It’s also different for me to not share my thoughts as things unfold, but I really feel like it’s not time. I feel like God wants me to really rely on him and reveal my writing when the time is right. All I know is now is not the time. Keeping this big surgery news to just a small circle is allowing me to lean on close friends, family and God. It’s allowing me to keep the outside noise to a minimum, which is really important to me and something I think God wants. He wants my attention. This time feels sacred in a way. It’s allowing me to trust what I know God says in his word and have that intimate time with Him to allow all of my raw feelings and emotions space to process with God guiding me, establishing my steps if you will.

Every day Rob and I discuss how we’re feeling and all the emotions that are swirling. I’s crazy that these are the steps God is establishing, we know God’s up to something. Our society relies a lot on social media as a barometer for what they should do, or how they should feel based on thumbs ups or sad faces. But in reality, that’s so empty. I am feeling more calm as the surgery approaches and I know that my trust has to continue to grow, and it is. I’m thankful for the action of friends and people in our lives who are showing up. I’m thankful for people in business who have shown incredible understanding, more than I could have ever expected. I’m content in knowing for a fact that God…he’s got me. He’s got our family. He’s got us, and there is no other place we are supposed to be than right where we are.

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)

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

It Wasn’t a Detour…

Earlier this week I had a Facebook memory come up…some memories are horrible, and they’ll always be horrible. I don’t like the reminder, Facebook.

This was the memory.

It’s a blog from two years ago, and in painstaking detail, I write about our eight day hospital stay. When I read it, I think: “maybe that’s where we messed up…maybe we should have pushed for this instead of that. This is where things must have changed. Should we have been discharged from the hospital or stayed longer? Would that have made a difference?”

I text the blog and all these thoughts to Rob, but I told him that I already knew the answer. It was God’s plan all along. There wasn’t more that could have been done. I’ve done that dance for two years and I don’t do it anymore. I land on the fact that this was God’s plan for Reagan and for us. Who are we to thwart God’s plans? We can’t change them…Reagan’s days were determined before I was even born.

Rob and I are the only ones who know exactly what it’s like. Yes, we had some family and friends who were there, but Reagan is not their daughter. She’s our daughter.

So Rob sent me these photos as we took a break from work in the middle of the day and decided to take a memory lane detour for a few minutes.  And realize, this is so hard for me, for us, to re-live. It’s hard for me to look at photos of before because, I start thinking we should have done more, and I start thinking that I’m a failure for not being able to save her from what happened. And I start to wonder what sort of things she’d be saying, I start thinking I’m missing out on who she might be.

But that’s a lie. Because this is who Reagan was created to be.

On March 22, Rob played with Reagan outside and captured these photos:IMG_9136IMG_9137

Reagan is strong and healthy and holding a straw with her mouth. She can’t do that now. Everything seems perfect. The sun is shining, she’s got a big flower bow and a shirt that matches the sunshine.

On April 6th, we came home from the hospital, and this is a picture from a video we took in the car on our way home.

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I told Rob that she looks confused, which could be explained by being in the hospital for eight days. And her mouth is open more…this photo makes me wonder, was the damage already happening? Is the reason she didn’t want to drink her bottle because she couldn’t.

The photos below were on April 7th. I don’t even know if I’ve ever seen these photos since they were on Rob’s phone, but I told him that she looks weaker…especially the one of her laying on the blanket. IMG_9142 IMG_9143

Since Reagan wasn’t drinking, we took her to one of the most renowned therapists in the area, Deborah Beckman. And on April 8th, on the DAY she had her crisis we had an appointment in the morning and she said the strength in Reagan’s mouth was that of a four to six month old. Reagan was 13 months, drinking and eating, like a child her age is supposed to.

Looking back at everything like this in a cumulative manner, Rob and I know that these were signs that things were changing. But just because something is happening, doesn’t mean you can stop it. I’ve said it before and it’s true, even if we knew damage was happening in her brain, there is nothing on this earth, short of God’s hand on her, that could ever stop it. There’s no medicine, no machine; there is nothing that could have prevented it.

The hardest photos to look at side by side are the next two.

April 8, 2014 at 5:26 p.m.

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April 9, 2014 at 12:28 a.m.

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What we didn’t know then, was that Reagan had already had the basal ganglia hit to her brain. The only thing we knew was that she had one seizure. The seizure was due to the basal ganglia being completely damaged. It’s like her brain was short circuiting trying to figure things out.

There are other photos and videos. Videos of her flailing that I posted on the blog back in 2014…but this photo gets me every time.

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You can see a million things in my eyes, even though I’m looking away. I was so angry at God. I was so mad and pissed off at him, and I was so hurt and I just wanted things to go back. I felt like I was living in a nightmare, because I was. It seemed like the only time my eyes stopped leaking tears was when they were asleep. And then there’s my mom, covering her only grandchild in prayer and love, and extending it to her only daughter. This photo shows the broadest spectrum of emotions between mothers and daughters.

After we got Reagan’s MRI results, I wrote this blog. It’s one of the most emotionally raw things I’ve written and the only time I’ve ever dropped the F bomb in the blog (I think). I remember writing it at the Ronald McDonald House in a blue room with insanely high ceilings and beautiful wooden beams, located in the the top corner of the building. I wrote it, never re-read it just hit “publish” forgetting all about the fact that I just let that expletive fly. But it was so real and totally accurate to the mood of that moment. Re-reading it, though, there are so many things we were told we would never do with Reagan that we have done! Like take her to pre-school, a regular pre-school, go out to dinner, breakfast, etc. She definitely is one of the bouncing kids when she goes to the hospital for blood draws, and while she’s not talking yet, she tries to talk, she signs, and is using her “talker” device to help tell us things. And she mostly tells us she wants to eat a veggie burger.

Two years.

I can’t believe it’s been two years since her crisis. Seems like yesterday but at the same time, a lifetime ago.

Today Reagan is doing everything we were told she wouldn’t. Walking is certainly one of her greatest achievements…she started at two and a half years old and continues to get stronger every day. She eats, she can feed herself finger foods and use a fork somewhat consistently. She drinks her formula out of a WOW cup, not all of it but on a really good day she can drink almost half. She communicates and she understands 100% of what’s going on. And she’s still got that sass.

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She loves to play dress up and she loves to climb. The coordination in this video is mind boggling.

The prayers that have gone up to God for our child…to say we are THANKFUL for your prayers doesn’t seem adequate. God is so amazing to listen to our prayers and then ACT upon them with healing power because of our persistent pleading. Our specific prayers now are for Reagan to talk, clearly. For Reagan to be able to have the motor planning pattern and correct movements in her mouth. This will help her not only talk, but eat and drink more. She’s a complete miracle child, God’s hand has definitely been working in her body because of your prayers. So please, please don’t stop.

I know this was a heavy blog, but I want those reading to know that Rob and I are in a good place with Reagan. You don’t have to feel sorry for her or for us. Instead stand in awe that God still performs miracles today in 2016 and you all are witnessing it. God’s totally in control and who knows why we’ve had to take, what most would view as a life detour. It’s not a detour if it’s the way God had planned all along.

Here’s the Reality with GA-1

We saw Reagan’s new neurologist a couple weeks ago. We really like him. As he was examining Reagan he asked us what the MRI said since he didn’t have the records yet, and we let him know that the entire basal ganglia was damaged.

He seemed to be disbelieving of that.

“Both sides though?”

“Ummm…Yes? I believe so. It’s pretty substantial damage,” I said.

The Dr. had just finished examining Reagan. He took her on a walk, then picked it up to a light jog and asked her to keep up. He took her up and down some stairs in the PT area, and asked her to point out the nose on a really tiny army man. She did all of that. He had asked her to grab a tape measure and pull, with each hand. I can imagine that the Dr.’s wheels are turning…both sides of her body are working, she’s able to point to something tiny, she’s able to walk, climb stairs and keep up a fast pace…I need to see this MRI.

chasing reagan

Reagan’s genetics Dr. came into the appointment and pulled up the MRI.

“Oh. WOW!” Was the neurologists first response after viewing it. It seems we had conveyed correctly. One thing he said that caught Rob’s attention was the fact that there was no bleeding on the brain.

“I’m sorry, what?!” Rob said. “That’s a possibility?”

Both the Neurologist and genetics Dr. agreed. GA-1 attacks the basal ganglia in a crisis, and there can also be bleeding on the brain. GA-1 can wreak total havoc, as you all know since you saw it do that to Reagan. But a brain bleed can do much more harm than what was done to Reagan.

Over the thanksgiving holiday, a little member of the GA-1 community that I’m a part of passed away. The boy was very close in age to Reagan and without providing the full details, he did pass away due to GA-1. Any number of neurological things could have happened in the crisis that took his life. And in reading that mother’s words, I had to deal with the fact that that scenario is a reality. Even though Reagan has had a crisis and we’ve all witnessed how it took everything away, and watched together as our incredible God continues to heal her and bring everything back, it stopped me in my tracks. I became paralyzed with fear.

It’s the winter time, and flu season, and I’m taking Reagan everywhere. To stores. To the grocery store. To the beach. To preschool. To church. To people’s homes. What if that happened to her? What if we lost her? 

Ever since Reagan’s diagnosis and more so since her crisis, my mind has gone on these wild tangents. Instead of dreaming about her first day of Kindergarten, I wonder what I would do if I had to plan a funeral. It’s terrible to say. It’s also a horrible reality due to GA-1. I have to snap myself out of those moments and cherish the moments I have. I trust God. I really, really do. I’ve had to, and I also want to.

Rob and I do everything we can to keep the hurricane winds of fear away…the winds that try so hard to blow our candle out, and the wind is always blowing. Sometimes we’re good at keeping the wind away, other days it creeps in and blows our flame out and we have to reignite it again. I believe Reagan’s crisis allowed us to just live in the moment, to do more things with Reagan and to trust God more fully. Reagan’s crisis made us realize we are not in control and we can’t control her GA-1. The wind will always blow, which means we require more adjusting and honing and moving closer to God.

This holiday season, I’d ask for you to pray for the family of the little boy with GA-1 who lost his battle. Pray for all the GA-1 families and families living with rare disorders, diseases and disabilities. Pray for those who’ve lost loved ones. This time of year can be tough…but we do have hope in Jesus. We don’t have to live in fear and we can trust in the one who gave his life for us. He conquered all fear and death when he came to this earth and gave it all.

Thank you for being a GREAT doctor.

One of Reagan’s doctors is moving (waaahhhh!!) He’s Reagan’s neurologist, and one of our three favorite doctors; let me tell you why.

You’ve all heard about the things we were told by one of the other neurologists within the practice: “You need to make her comfortable, she won’t do anything, she won’t walk, she may not learn, she probably will only say a few simple words.”

Those are hard things to swallow. But the neurologist who Reagan saw regularly, he believed in her. Our first meeting after getting out of the hospital he told us that he would be aggressive in his recommendations, and it was up to us how aggressive we would want to be. He guided us with each medication he recommended to help control her movements and was honest, especially when he said: “Seizures won’t be your biggest concern, it will be her movement disorder. We need to try and get her movements under control.”

He had a plan to help.

I remember our first appointment right out of the hospital, I came in with a big tabbed binder with a section for each of her new specialists and red, teary eyes. He spent about 45 minutes explaining how the Basal Ganglia worked on a diagram. My head was spinning as he took the time to explain how the medications he was recommending would react in the brain.  He talked about the electricity of the brain, positive and negative charges, how two negatives equal a positive (is that right?). I don’t remember what he said because it barely made any sense to me.  What I gathered though was he was smart, and even though Reagan’s combined conditions were SO RARE, he had experience with metabolic patients and also with patients who had movement disorders.

We were in good hands.

basal ganglia diagram
The diagram Reagan’s neurologist presented us with during our first visit.

He didn’t pretend to know it all, because after all, Reagan was a baby and every medication we’d be trying, wouldn’t be FDA approved for babies, it would be scaled down for her size and weight. When I’d read a disclaimer about a medication, he would calm my fears.

He provided us with a glimmer of hope when we were so, so low, telling us that her brain could rewire itself and find other pathways to do the things the Basal Ganglia was supposed to do. And Reagan’s brain has rewired itself, some other part of her brain is helping her walk, not the Basal Ganglia.

Earlier this year we had an appointment during a string of tough days and he looked me in the eye and said, “You need to be more positive!” It hit me in the gut, but I needed it. He told me to only compare her to herself, not to other peers her age. “You compare her to how she was doing a month ago.” It’s a mantra that has stuck with us.

Reagan’s made such huge improvements since her neurologist came into our life and I’m glad he’s been able to see her have so much progress. Her movements are much more under control, she’s walking, eating and trying to communicate. On Friday we had our our last neurology appointment with him, and he said she looked fantastic and the best he’s ever seen her.

Rob and I always said the neurology appointments were the hardest ones, but he always made them better and they ended up getting easier.

We will miss you Dr. L. You are a fantastic neurologist and our family has been extremely blessed to have Reagan under your care. Best of luck in your newest endeavors.

Reagan selfie
Dr. L, Reagan and Mommy.

What does he know anyway?

We just got done with our annual 24-hour EEG and Reagan did awesome. Remember last year’s EEG? We were stuck in a tiny room, in our Dr.’s outpatient facility, it was 80 degrees, we had to share a community bathroom with 12 other patients, Reagan exploded out of her diaper in a bouncer and she did not sleep at night, so we left at midnight with our AC full blast all the way home. It was one of THE worst experiences.

So when her neurologist asked us if we wanted to go to the hospital for the EEG or their outpatient facility Rob and I sung in unison “THE HOSPITAL!”

Dr.: Are you sure? B/c the hospital has sick patients, we wouldn’t want Reagan to get sick.
Us: Let’s see…will we have our own room? Our own bathroom?
Dr.: Yes.
Us: Will it be on the neurology floor not with the general population of sick people?
Dr.: Yes
Us: Can we have visitors, take a walk around the grounds when we need fresh air, have food other than the provided lunchables and twinkies at the outpatient facility?
Dr.: Yes.
Us: Yeah, we’re confident we want to be at the hospital.

We couldn’t have even imagined her being as happy and content stuck in a room, in the hospital, hardwired into a wall and computer as she was. She didn’t cry when the probes were put on her head, she was OK with the glue keeping them on, she was even OK with them wrapping her head in whatever it is they wrap it in. The only time she screamed was when they gathered the wires into the sock/sleeve thing. I don’t know what it was about it that upset her so much, but she screamed and held onto me like an octopus.

Reagan played in the water at the sink for hours, she played with the fridge door, she walked around the room and was totally content. She ate well, napped well, played well and gave all our friends that visited and all the nurses and Dr.’s hugs when they came in, and then clapped for herself.

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Night time was the true test since that’s when it all fell apart during the last EEG. Reagan and I shared a twin air mattress and she took up the entire thing. She slept great, but I didn’t fall asleep until 2 a.m. and then Reagan woke up at 3:50 a.m. to laugh hysterically in her sleep. I don’t know what’s going on, but ever since the toddler bed conversion, Reagan likes to get up for an hour or two in the middle of the night, and have laughing fits in her sleep. Not giggles, I’m talking, deep, belly, body shaking laughs. I can’t even be mad, I just wish I knew what we were laughing at. Finally we got to sleep around 5 a.m. and she wanted to be up at 6 a.m. Nope! I just kept telling her to lay down, so she laid on my neck and we snuggled for the next few hours.

How did we make it an entire 24 hours smiling and laughing through it? Rob and I were so amazed at her resiliency, which made it so much easier on us.

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When the Dr. came in to tell us about the EEG, he said it was pretty good. Nothing major, no seizure activity, but some activity typical for children who are developmentally delayed…whatever that means. This is the same Dr. who said Reagan would never do anything, and for us to make her comfortable. I’ll never forget that conversation, where it happened, and even what he was wearing (a tropical hawaiian shirt and jeans). It was one of those conversations that was so defining, so memorable. It terrified us and will always stick with us; it was probably the lowest point of our lives.

So we couldn’t wait to show him the below video and watch him, watch Reagan walk around the room; he thought it was incredible. And he was truly amazed.

I don’t know why I decided to ask, but I figured his answer would have to be more positive, given all that he just witnessed.

“So Doc, now that Reagan is walking…do you think she’ll be able to talk?”

His answer wasn’t much different than a year and a half ago, “well, I think she might be able to say some simple words, maybe some simple sentences, but nothing too complex.”

Seinfeld glasses

What? Did he not just see the video, the walking?

This time, getting that reply was not devastating at all. It was a challenge for Rob and I. Because, that Dr. doesn’t know about our God. Our God can heal her, he is healing her…and she will talk. She will do amazing things, she already is! She is bathed in prayer, she is determined and nothing a Dr. says will change her will to succeed. I think the Dr. is actually very good, but he can manage her meds, read her EEGs and try to keep the seizures at bay, we’ll manage the opportunities we give her to show us how far she can fly.