De-emphasizing GA-1

This blog is written by both Rob and Anne-Marie. Indented and italicized paragraphs are written by Rob. 

We visited the Clinic for Special Children, in Lancaster, PA. There’s a reason we decided to come here, in the middle of Pennsylvania, Amish community. There’s a man here, Dr. Strauss, a world-renowned specialist in GA-1. He helped create and redesign the formula Reagan drinks, he’s helped with the protocol for treatment and during our meeting, he said things that turned our world upside-down and kept it spinning long after we left.

In the middle of this corn field, is a cutting edge facility filled with people who have seen more GA-1 patients than anyone. You see, the Amish are more prone to genetic disorders due to their small genetic profile. And Dr. Strauss has treated hundreds of children with GA-1 not just in the Amish community, but throughout the world.

He eloquently explained GA-1 and the part of the brain that GA-1 attacks, comparing sections of the “basal ganglia island” to a pizza, with a cheese part and a crust part. He explained that there’s only one type of cell, “located in the crust” and this is the only location in the entire body where this type of cell is located, and that GA-1 only seeks out this type of cell.

After looking at Reagan’s MRI and going through the history of how her crisis unfolded, he confirmed that the manner in which she collapsed is how GA-1 works and that it’s a terrible disorder. He also said that had we done an MRI the day before her crisis, everything would look normal. Her MRI on the day of her crisis proves it was an isolated incident, and shows that the one type of cell this disorder goes after, was destroyed.

We continued our discussion, he said the greatest risk for damage like this is until the age of two. After two, the risk declines greatly, which we already knew. But, what we didn’t know is that if there is a crisis and GA-1 destroys the one type of cell in the crust of the basal ganglia, it’s gone. There are no other cells like that in the brain or the body, and the risk for another crisis is essentially removed.

Now, no one will come right out and definitively put on paper that a crisis will never happen, ever again, but as we spoke to Dr. Strauss our level of stress and anxiety started to ease up. Yes, Reagan will have GA-1 forever, it’s in her DNA, but we can begin de-emphasizing it’s impact in our lives.

Looking back, planning and bringing home Reagan on day two of her life was essentially like moving into our newly constructed dream home. On day four, when we received the devastating news of her genetic disorder and learned about this terrible thing called GA-1, we essentially boarded up the windows and barricaded ourselves inside, as if we were preparing for a category five hurricane. When Reagan had her crisis, our new and perfectly planned home was damaged and we dug in deeper—or to use a phrase only Floridians say during hurricane season, we hunkered down.

But at this appointment and to continue with the analogy, Dr Strauss began to take down the boards that covered our windows to show that the storm had passed. Yes, the storm’s damage had been done, but the damage HAS BEEN mended in a new way, this time with character and uniqueness

GA-1 doesn’t need to define Reagan, and up until this point it has been defining so many of our waking hours.

Now our position is slowly shifting; if she doesn’t drink all her formula, it’s OK. If she doesn’t meet exactly 20g of protein a day, it’s OK. So many times we’ve felt the pressing weight of not meeting a specific protein goal, so much so that we end up begging Reagan to ice cream or cookies to help her meet the protein goal. He gave us a wide range of 18g – 25g of protein for a goal. Just writing that makes me feel more relaxed. This approach, is mainly due to her age and the lowered risks, but also because she’s had a crisis and that particular type of cell is gone.

Dr. Strauss said Reagan reminds him a lot of another GA-1 patient of his. She recently turned 19, is going to college and just got her driver’s license. She also has a movement disorder and had a crisis.

“You will be surprised at how independent she will be.”

I could have cried when Dr. Strauss said that.

Then, we talked about the medicine. He wanted to know why she was on such a concoction of neurological medication. Rob and I discussed that it was due to her movement disorder and everyone being fearful of more seizures. We just thought this is what you do. He colored in our thinking by telling us it’s because when doctors see a problem, it’s like a popped nail and they can’t help but grab a hammer to fix it.

Seizures are a common occurrence during a metabolic crisis, and Reagan had three. But she hasn’t had any since then. We’ve driven ourselves crazy wondering if she hasn’t had seizures due to the medication she’s on, or is it because she’s not prone to have them at all? No one has felt comfortable taking her off the medications because what if she has another seizure? Dr. Strauss likened that line of thinking to walking around with an open umbrella over your head and rain boots on every day because it might rain.

The months following Reagan’s crisis were understandably dark times for both of us, and even though we have emerged from that darkness, it has stuck with us. For the past 4+ years, we celebrate every gain Reagan makes with extreme joy, but there is always a part of us that wonders if it will be taken away. When will GA-1 pull the rug back out from under us? When will this all come crashing back down? Living like that has taken an unseen mental, physical and emotional toll on both AM & I. And when Reagan gets sick, like every child does, we retreat within ourselves, preparing for the worst.

But hearing the words from Dr Strauss “begin de-emphasizing GA-1 and its impacts in our lives” was something freeing for both of us, as if someone had removed the albatross from around our necks. Do we still need to watch what she eats, make sure she drinks her milk (formula), and be cautious when she is sick? Absolutely, but that sort of normal is music to our ears. We can do that.

“Get out from under this dark cloud that her crisis has had on your life. It’s over. It’s never going to happen again.” Those words spoken by Dr. Strauss to us were like a crisp breeze over our face.

I get nervous writing something with such finality and while those were his words, what if he’s wrong? There are others in the medical community of genetics who aren’t so willing to provide guarantees. In medicine and in life, there aren’t guarantees and we understand that. But the freeing feelings Rob and I felt as we sat in that patient room were unmistakable.

What now?

Well, we’re going to start systematically weaning Reagan off her neurological medications, there are four of them and this could take a few years to accomplish. Two things could happen, 1. her movements might increase and 2. she might have a seizure.

If her movements increase, we’ll see by how much or if she’s able to work through them. The benefit of removing some of these medications is her clarity can increase, her behavior and mood could improve, maybe her talking too. The risk and reward have shifted. Before she couldn’t control her arms from flailing, and now she’s trying to run and do ballet twirls and pliés all over the house.

And we’ll pray she doesn’t have any seizures. But we’re putting the rain boots away and our house isn’t going to be boarded up anymore. GA-1 is here to stay, and we have a healthy respect for it, but we’re ready to de-emphasize it in our lives and try to live a more normal life.

Reagan is Going to Brain Plasticity Therapy!

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

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

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

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

There are four ways you can help:

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

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

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

xoxo

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.

Going against the Dr

“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.”
—Isaiah 41:13

Reagan was fever free until around 6 pm. But at dinner, she was shivering and yawning (it was a no nap day). After getting home from an inspection, Rob had Reagan in the bath trying to cool her down. Her temp was at 101.

During the bath, Reagan couldn’t stop coughing and threw up. After the bath she was still hot and shivering…she fell asleep in Rob’s arms and we gave her the usual night time meds and some ibuprofen. About 10 minutes later she threw up out of a hard sleep, while in Rob’s arms…her fever was 102.7…

She looked awful and was moaning and so exhausted. We took her temp after giving Tylenol and a cool compress and it was at 104.5. The genetics Dr. told us to go to the ER.

Rob had the composure to say no. He looked me dead in the eyes and said, “we’re giving her a bath and trying to bring it down here. It will be faster than the hour it will take to get to the ER and then be seen, and what will they do?”

So to the bath we went, and she hated every moment of that cold bath and the wash clothes on her back and forehead. After that,
we took her temp the old fashioned way (sorry to your little bum Reagan). And it was 102.7…our dr was on our heels texting and telling us to take her to the ER if her temp didn’t get below 101 and reminded us that Tylenol takes effect within 20 minutes.

For us to stay home, God needed to show up.

Next check was 101.8, and a few minutes later it was 100.3.

Rob told me he felt like God was clearly saying, “stay here, do not go, and ask for my help.”

And when Rob looked me in the face and said with authority, “we are staying, do not fear…Jesus didn’t have fear when he went to the cross, he trusted God. God has Reagan, nothing can happen to her unless he says, and staying here is better than going to the hospital. What can man do that God can’t?”

So we stayed, and we gave meds, did the bath and we prayed for healing to come fast. And God showed up.

Tonight we still have to feed her at least two more times to keep the calories in her. The last feeding she coughed a bunch, but I just prayed with each cough it was her last…and as I’m wrapping this up she’s stopped coughing (mostly) and is finally sleeping peacefully.

If you’re reading this, please pray for her tonight…

My girl

Happy birthday, Reagan. Three years ago, we took this photo…it was before we knew anything was wrong with your newborn screening. A few short hours later, we received a call that would change our lives forever

First family photo.

GA-1.

the 20-minute method

Mothers Day Family 2

We worked so hard to never get you sick…

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…but one day, you got sick.

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And we did everything we could do to protect you.

ER check in for visit 2

We spent eight days in the hospital for your first illness, RSV. And then, after we were discharged, two days later you had a metabolic crisis. Your entire basal ganglia was damaged, and you had three seizures.

Reagan hooked up to an EEG. There are about 50 wires under her cap

Dr.’s said you’d never do anything.

Saturday 2

They were wrong.

Daddy and Reagan on hospital discharge day.

Mommy and Daddy were sad, but we determined in our hearts to do everything we could.

fighting for normal

You showed us you were a fighter…

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You worked harder than we could have ever imagined was possible.

Arms up!

Standing with assistance for the first time.

View More: http://dearlyphoto.pass.us/wurzelfamily2014

You taught us new things. You made us get comfortable with our new normal…with a g-tube.

View More: http://dearlyphoto.pass.us/wurzelfamily2014

pool happy smile

You made our hearts live outside our bodies…and made us give our fears to God.

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You have taught us more in your three years of life, than we have ever learned in our 35.

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How is it, that God has used our little babe to touch the lives of thousands of people? Do you know how special you are, Reagan?

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Did you know, God is using you? YOU!! As a witness to His healing power. Did you know…you’re a miracle that continues to perplex Doctors?

Reagan standing with bauer

You took that walker…

Nuts

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And then decided, you didn’t need it.

Balloons

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You have given us an incredible roller coaster ride in the three years you’ve been in our life and taught us more about Jesus, miracles and what life is actually all about.

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You’re incredible. Happy birthday babe…we love you so much!!

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Mamma said there’d be days like this

The thing mamma never did tell you is when those days would come or how they would make you feel.

Like today.

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All I know is I left a therapy appt for Reagan and ended up at home in tears. The dishes were piled high, I looked at a massive pile of clean clothes on our sofa, that have just accumulated more and more as I’ve continued to slide them over to sit and watch a show.  Let’s not talk about the clothes in our bathtub, which has turned into a massive hamper. [forget I even mentioned that, OK?] My other friends with toddlers assure me, these things are normal.

The things I struggle with though are not just maintaining a neat and orderly house where I can find my keys on a regular basis, because I cannot find them. Ever. It’s the daily battles I have with Reagan. Including, but not limited to eating. Eating. The thing I love to do because I’m Italian and it’s in my DNA.

Rob and I dreamed about helping Reagan try all sorts of different food, we dreamed about having meals at home or at a restaurant with our daughter. We dreamed about food because we love it and we love meal time, and now it’s a chore. We did not dream about lugging a g-tube pump, formula bag, tube connection, backpack and formula. I did not dream about having to force feed my daughter food to get her to meet her meal goals. Reagan gets fed four times a day, and lately it’s become my least favorite parts of the day. There’s not much joy in preparing three or four items only for her to throw the spoon, keep her mouth shut, or pretend to take a willing bite just to spit the food into her hands, onto the table or act all gaggy mcgaggerson with it. And sure, maybe this is typical toddler behavior, but unlike most other parents, I can’t just say, “Fine, you’ll eat when you’re hungry!” No, you HAVE to eat. You HAVE to meet these meal requirements. You HAVE no choice. And if you don’t eat, I have to make it up with Pediasure in your gtube. One way or another, the menu goal will win. I don’t want it to be like this, but it is. What I want is for meals to be enjoyable, but I’m filled with frustration, that Reagan most definitely feels, so now, she seemingly eats for everyone but me.

Failure.

That’s the word that’s been playing in my mind. It started out this morning with our first therapy appointment to work on the speech device:

“How’s the talking, has she started talking more?”

Ummm…no not really.

In my head…“That’s why we’re here with this speech device. So a computer can do it FOR her because clearly we’re failing at helping her to talk, since she’s not.”

Another question (or four): Is she eating more, is her tongue going side to side to move food? Are they doing word prompts? But not just word prompts but prompts to connect consonants to vowels? Like this to help her say things like B aaaaaaaa–B-eeeeeeeee, as she moves her hands prompting Reagan’s mouth into all these different shapes to make sounds that form words.

That’s a lot of freaking questions, is what I felt like saying.

Um, I don’t know, she sort of says baby in her own way so I don’t know that they do all that. The other therapists that come to the home do different things. We have multiple therapists to focus on different things and they are good at those things. But when it comes for us helping Reagan put it together…

Failure

Overall, her speech device therapy was good…it just came at me like a bulldozer and I wasn’t expecting it. I came in with a positive attitude and it got flattened pretty quick. I know we need to work on A to Z and then back through the alphabet again. I know that. But even if I do that every day, 24/7, that doesn’t mean the result will happen faster.

After speech, I drove home for another therapy…Reagan’s feeding/OT therapist met us right as we came home from speech device therapy and I was basically in tears over the messy house, over the fact that I can’t have an adorable conversation with my three year old in the car as we ride about town. I don’t know what Reagan would say b/c she can’t say it. I don’t know how she’s feeling b/c she can’t tell me. I feel like I’ve been robbed of these awesome things. The things that make toddlers so stinking cute when they talk and say silly things they can’t pronounce or ask unknowingly inappropriate questions that make everyone laugh. I’m not experiencing that. I’m experiencing another mountain to climb. That combined with a food battle makes for one of those days my mamma told me about.

Rob left work, came home, spoke truth to me and over me, cleaned the kitchen and let me work for an hour and a half to get things I needed to do, done.

But this attack wasn’t done after lunch. No, sometimes Satan just keeps attacking. So I reached out to my friends. They spoke truth over me. And I called another friend while driving alone and aimlessly. “Come to my driveway now.” Is what she said.

And we sat in the parking lot of her community playground and I cried, and I swore and I vented and I tucked my head into her shoulder and just whispered that this is not fair. And she cried and sat and listened. But in only a way that she can do, she turned it around.

Her: How can you be happy at mealtime, Anne-Marie?

Me: I don’t know…It’s impossible basically because I can’t fake my feelings and she’s driving me nuts!

Her: Instead of being frustrated with Reagan during feedings, what if you said things like:

With Food:

  • Reagan, God gave us this wonderful food for us to eat so we can be strong.
  • Let’s be thankful we have this food to eat Reagan
  • God gave you a spirit to not give up. Don’t give up Reagan, you can do it and eat this food
  • Let’s be thankful we can eat and chew and swallow. God healed that part of your body Reagan so that you can enjoy the food that God gave us.
With talking:
  • Try to say (whatever word she’s trying to say). God gave you an attitude to keep going. You can do it Reagan, God will help you.
  • God has helped you with your sounds Reagan, so that way you can start forming words. Keep trying, you can do it.
  • God made you determined, Reagan. You can push through and make those sounds to form words. You know how to do it…
  • You are smart Reagan, show us what you know and let’s thank God for your ability to communicate with words!

Do you know what it’s like to sit with me when I’m spiraling in thoughts from the enemy? Few do. Most of the people I talk with say things like, “you’re so strong, I don’t think I could do that. How do you juggle all these things.”

I don’t…I combust and then there’s a small group of people who can take my F-5 tornado, let it whirl, let it touch down with destructive thoughts, and then can look me in the eye with their own tear filled eyes and speak truth to me. As we sat in the car, she wanted to end with saying things we are thankful for. We went back and forth for a while saying things we were thankful for in our lives.

All day, I was wallowing, and I didn’t want to come back to God…even though I just posted how RELENTLESS He is for ME! Some days it’s just hard, and that’s why we are supposed to lift each other up. We can’t do this life alone, especially in this messy, broken world in which we live.

Relentless

I went to the Dr. the other day b/c I was having chest pain. I know why. I was stressed to the max having to deal with all of Reagan’s super expensive medication that she was close to running out of. Oh the joys of switching insurance co’s (her insurance co. last year, went under). So we’re back with Humana. They are probably thinking, “not these guys again!!”


 

IMG_4354
Hi Humana! We’re baaaaack!!!

I’ll spare you the nitty gritty details, but the reason my heart started feeling like it was being attacked is b/c Reagan’s meds would be denied. After an initial (3 hour call) with the Humana pharmacy and their complete confidence in filling Reagan’s medications, no problem, I decided to proceed with them as our new pharmacy. But after many hours, days and three weeks of follow up, I was days away from being out of medication on multiple meds. The thing Humana forgot to mention is how ridiculously long the process would take and how three medications needed a Dr.’s prior authorization to be dispensed.  So while waiting, three medications were denied coverage, and then expedited appeals and peer reviews were required.

When we finally got to a point where things seemed to be on track, Reagan had one day left of one medication…it couldn’t be re-filled locally b/c CVS was showing that Humana filled it. But Humana couldn’t provide any information on when it would be shipped, I was only told, it’s in process somewhere in their warehouse. I imagined the millions of subscribers Humana might have and thought of that warehouse and wished I was able to go down the street to my local pharmacy. So after paying $25 for that medication days ago, if I needed it tomorrow, it would be $300 at CVS since it was too soon to refill. But alas, hours of phone time later, I had an override code, making that a $10 medication and Reagan not running out. #stressedtotheMAX.

This happened again with another, more expensive ($750) medication. She was almost out, I had paid…but it had not shipped and no one could tell me when it would ship. CVS couldn’t order it b/c the actual cost is $2500 and they needed approval from the CVS manager AND I had to confirm I would pay it. I needed another override code. Luckily the medicine arrived on the last day of medication we had.

So I didn’t really spare you the nitty gritty like I said.

Back to my Dr. appt and my chest pain (which turned out to be stress induced reflux). I told her I knew why it I had it, I was stressed, due to the above and she said, “Having a special needs child is relentless.”

Relentless.

Relentless.

That word has continued to stick with me. She’s right, it is relentless. There’s always a crucial battle to fight. Medications, therapy, formula, feeding supplies, measuring her food, giving her enough calories, but not too much protein. Managing sicknesses to avoid the hospital, juggling multiple dr. appts and blood draws and trying to sprinkle some fun in too. It’s hard.

So imagine, when I think the medication battle is over, and just this week I get a call from her case manager. “Hey Anne-Marie, it’s L the case manager…listen, another one of Reagan’s medications was denied. Try not to panic, we will do the expedited appeal, get authorization and then do another peer review, it can take up to 3 business days.”

[Siiiiiiiggggghhhhhh]

Another medication, down to the wire. Why is it always down the wire? (I’ve been working on this all month). And this medication retails for $16,000/month. And why are these meds so expensive? Can we just praise Jesus we’ve met our deductible in the first month of our insurance plan because of Rob’s cost/analysis spreadsheet genius-ness?

So, I just said “Ok” and sent one email to the Dr. office and left it up to God for the decision to be made in time.

I told God I can’t fight this fight. I have been fighting and crying and my body hurts. I don’t have the energy to fight or worry. I need you to fight for me. And my thoughts lately (from God) have been two words. PRAISE HIM. When trouble comes, praise Him, when it doesn’t make sense, praise Him. When you don’t understand how it will work out, praise Him. So that’s what I did. I hung up and I didn’t think about it again.

An hour and a half later, the medication was approved. Why didn’t I have this posture three weeks ago? I could have saved myself so much anxiety and stress! An hour and a half…I still can’t fathom it. The only thing that had changed from when I started this process to this one final medication was I fully trusted God.

That same day, I had taken my car to the dealer for a routine service. My car has 170,000 miles on it and ZERO warranty, it’s nine years old. I get a call from my service rep, “Hey AM, we need to talk about your car…there’s a repair that’s needed, it’s $2,500.” [GULP]. Again, my posture is to praise God and I ask him to please handle this…somehow.

Rob sends her an email and just asks if she can do any better on the price and we leave it at that. The following morning, we receive this:

Good Morning,

I wanted to give you good news first thing this morning. We contacted Lexus on your behalf. Due to the fact that you are a very loyal customer, Lexus has decided to cover the repair 100%! We are steadily working on it, but I wanted you to start out your morning on the right foot. I’ll let you know how the repair is going later today.

ARE. YOU. KIDDING. ME.

Covered. Paid for. And all I kept thinking was, God is relentless for me. God is continuously pursuing me, covering me and unrelenting in caring for me. And, he never tires in caring for my needs, Reagan’s needs or our family’s needs. What an amazing reminder I was given this week. God is in everything…in getting a medication approved in record time and in paying for my car repair. Relentless.

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.

Double Blessings, Please.

Just logged in to type another blog and noticed this one was never posted from April 2015. So while it’s delayed and it’s not what is happening today, I want to share. And hey, I think we can all use the reminder that God is God and we are not.


 

We just had a hospital stay last week for four days. Four days for a stomach bug and dehydration. Having GA-1 is no joke. I remember getting dehydrated and going to the hospital for a 1/2 a day to get fluids and then managing my care from home with gatorade, water, soup and crackers. Not so for our little diva!

While at the hospital, I still had to be a mamma bear with the nurses, the pharmacy manager and the hospital administrators. I don’t quite understand why they feel they understand Reagan’s condition more than we do. I know they clearly don’t as there are only a handful of children in Central Florida who have the disorder, so in talking with a nurse I know their exposure to GA-1 is slim to none, unless they’ve had the pleasure of taking care of Reagan in a past hospital stay. Luckily, the Dr.’s tend to follow our lead as we speak with such presence and knowledge about Reagan’s disorder and it aligns 100% with conversations they’ve had with Reagan’s genetics Dr. I feel like we’ve had enough hospital stays now to understand the protocol in it’s entirety. Fluids: (she was at 75ML an hour), an IV bag of D10 (not D5 like a normal kid would get), IV of lipids if she’s not tolerating food or formula and Levocarnatine via IV (not g-tube). Seems simple enough, but when even those orders get messed up or take too long I’m not going to sit in our room twiddling…nope, I emerge like a bear and am the most vocal bear on the floor! Deal with it…grrrr!

We’ve been home for a week now and Reagan is back to her feisty self. Even though it’s been 10 days since we were admitted only now do I feel like we made it through a hospital stay illness. She has to build her immunities like any normal kid it’s just exceptionally frightening for us. It’s scary to know that we could leave the hospital with a different girl, one who could become more disabled due to an illness. So I am grateful to be home in our normal, with the same girl we went to the hospital with. I literally can’t express how grateful I am for that.

While in the hospital my girlfriends came to visit and they just hugged me and let me cry. They prayed over me and prayed for Reagan and Rob and I. As we took up an empty hallway, I said: “God has performed so many miracles in Reagan, thousands of them, I don’t want him to take them away! I want her to keep moving forward and never go backwards.” I logically could never fathom God taking away all that he’s helped Reagan re-gain. Losing all her gains I feel is my biggest fear. My friends said they couldn’t imagine that either. But, you know…God’s in control. I have to remind myself that so many times. He could take it away, but I pray he doesn’t. I pray he continually restores us like he did Job.

I think about Job a lot…he lost everything. “I loathe my very life; therefore I will give free rein to my complaint and speak out in the bitterness of my soul.” – Job 10:1

Hey Job, I can totally relate.

The book of Job goes on for 37 chapters of Job complaining to God, and then in the 38th chapter the Lord speaks. Holy moly does he speak. I’d encourage you to read it. There’s literally nothing Job can offer up when God speaks back to him and asks him a series of questions like,”Have you ever given orders to the morning, or shown the dawn its place, that it might take the earth by the edges and shake the wicked out of it?”

WHAT?! Clearly, we’ve never asked those questions or even thought about something like that! The sun rises in our world, but we don’t give orders to the morning (what does that even mean!).

One of my favorite questions God asks Job: “Do you send the lightning bolts on their way? Do they report to you, ‘Here we are’?” What a visual!

When God says his ways are higher than ours, they sure are! Job 38-42 puts me in awe of God and gives me the perspective I need.

Job lost everything. Reagan lost everything. Job got everything back DOUBLE what he had! And that’s what I’m praying for Reagan and for our little family. God give us back everything that was taken away and bless us in double fashion!

Job 40:12-17:

The Lord blessed the latter part of Job’s life more than the former part. He had fourteen thousand sheep, six thousand camels, a thousand yoke of oxen and a thousand donkeys.  And he also had seven sons and three daughters. The first daughter he named Jemimah, the second Keziah and the third Keren-Happuch.  Nowhere in all the land were there found women as beautiful as Job’s daughters, and their father granted them an inheritance along with their brothers.

After this, Job lived a hundred and forty years; he saw his children and their children to the fourth generation. And so Job died, an old man and full of years.