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GA-1 Mind Games

I absolutely hate it when Reagan gets sick or has a fever. She battled a low grade fever from Friday through the weekend with no other symptoms. One day she sneezed three times (I’d hardly call that a symptom) and one day her eyes were watery for about five minutes (what the heck is that?!).

Due to her metabolic disorder, she goes on sick day formula when things like this happen. It’s less protein and more calories…and more volume, four more ounces. So she has to tolerate 32 oz of formula before bedtime. I don’t even know if I have that much liquid every day (well…counting coffee I probably do). It just seems crazy to stuff my two year old full of formula, but whatever, it’s the protocol. We also cut her lysine from food that she eats by half, which is good since when you’re sick you don’t want to eat much. It’s a delicate balance, pumping her little body full of fluid, hoping she keeps it down and doesn’t get too sloshy and throw up…believe me, she gives us plenty of scares while sitting in her high chair, making sounds and faces as if to tell us she’s gonna do it. But she usually doesn’t unless she’s really sick, so I’m guessing it’s a behavior thing (how do we deal with that?)…

Anyway, beyond Reagan not feeling well and Rob and I walking around on pins and needles, while texting her geneticist about the day’s developments and wondering if this is serious enough to go to the hospital or if we can manage from home…it takes a ridiculous mental toll. If I were to explain it, it’s like the Devil is playing mind games with me.

Reagan at Dr
Reagan at the Dr.

For 33 years, Rob and I have gotten sick, been sick enough to be hospital admitted, watched friends get sick, their kids, etc. Never in all our years or experiences have we ever seen anyone loose skills and milestones, from a typical sickness. Except for Reagan…b/c of GA-1. And in the GA-1 community, it’s very common for one to get an illness and then be wheelchair bound for the rest of their life.

When we put Reagan to sleep at night, we thank God that she didn’t have a metabolic crisis or seizure and we praise him for all the skills she’s re-gained. And these past nights, we’ve thanked God for not letting Reagan loose any of those milestones, again. It’s a foreign thought to think any sickness can do this. It’s just that the way our bodies are designed to fight a sickness is not conducive to Reagan’s disorder. No one I know, except maybe the families I’ve met on Facebook through the GA-1 group, is worried about putting their child down to sleep, and then wondering if in the morning they will still be standing in the crib ready to start the day. When Reagan gets sick, I wonder if the bottom will fall out again. And it’s not just getting through the sickness, it’s getting through the following days and weeks.

If you remember, Reagan made it through her first illness (RSV). We came home from the hospital victorious. We all conquered our first sickness together, and were home for two days before she had a crisis. There was NO warning that she would collapse, no warning of a seizure. Reagan was healthy and actually given the all clear a few days before we were discharged from the hospital, she just needed to drink a bottle on her own…we worked on that for two days before leaving. The Dr. who made the rounds kept saying, “if she didn’t have GA-1, you’d have been home days ago, she’s not sick anymore.”

Everything we’ve ever known about getting sick, fighting sickness and rebounding from it are now useless when caring for our daughter. It’s a terrible mind game. I’m so glad Reagan has been (mostly) fever free since Monday. But this next week, when she’s playing…is she going to collapse and loose everything? I am constantly evaluating her…“is she not eating b/c she doesn’t feel like it b/c she’s sick, or is it b/c she’s loosing muscle tone and it’s hard to chew and swallow? Is it behavioral? She climbed up on the couch today for the first time ever, but she’s crawling a little differently, is that b/c she’s just not feeling strong or is something she’s fought so hard to regain fading away?”

I don’t know anyone else who has to think about these things when their child gets sick. And it plain stinks to be honest.

I’m writing this for you all to journey along with us. When Reagan is fever free, has overcome all the symptoms of being sick…we still worry. We still don’t feel out of the woods, we still pray, we still praise God for keeping her safe and pray for it to continue forever. For her to never have a metabolic crisis and for her to never loose her skills again. Every day she defies odds and that is a gift. And every day, we thank God for the gift that is Reagan. Please keep praying, even after her fevers and symptoms are gone…please pray that our minds can be at rest and can trust in God…b/c GA-1 is a mind game that seems to never end.

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The day we got our daughter’s MRI results

After Reagan had her metabolic crisis (due to her genetic disorder, Glutaric Acidemia Type 1 or GA-1 for short), she had an MRI…and while we were waiting for the results, I just knew something was so very wrong. When Reagan woke up briefly, probably 18 hours after her seizures, she smiled but was so limp that she had a hard time holding her head up. Our close friends were in the room when she woke up and I was so nervous that she would have another seizure. I already had two of my closest friends witness her seizures in the hospital room right after being admitted…I couldn’t bare to have six more watch it too. I just prayed, “please don’t let her have a seizure, Lord!”

“Rob, something is wrong,” I said. “She can’t hold her head up.”

“No, Anne-Marie…it’s because she’s on all sorts of medications that are keeping her sedated, plus she has all the wires on top of her head for the EEG, it’s probably heavy.”

It’s not that heavy that she can’t hold her head up, I thought to myself.

That evening our genetics Dr. texted that she was coming to visit and she had the MRI results.

“Rob, why would our genetics Dr. be coming to give us the MRI results and not the neurologist? It can’t be good news.”

I think deep down Rob knew this, but neither of us really wanted to believe it. What she told us next would forever change our lives. It would change the way we prioritized everything.

“Does Reagan have brain damage?” I asked.

Yes. 

Rob and I melted into the floor and into each others arms and our tears just flowed. I felt like I couldn’t breathe…my biggest fear in life was happening.

“Is it bad? Is it a lot of brain damage?”

Yes, it seems to be quite a bit.

Our friends were coming to the hospital and we met them in the hallway of the hospital and just sat weeping. It didn’t matter who saw us or who walked by. No one cared. Time stood still, and we wanted to go back to before. Have you ever been given such devastating news in your life? I’ll never forget our friends faces, the questions we asked Dr.’s…the answers we got. The two weeks in the hospital due to Reagan’s metabolic crisis are forever seared into my mind. I can replay every moment as if it were yesterday.

What we would hear from the attending neurologist the following day was that Reagan’s entire basal ganglia was damaged. The main job of the basal ganglia is motor control and the fluidity of movement. So if you want to pick up a pencil, that’s the portion of your brain that allows you to do that and allows you to use gross and fine motor skills to do a specific task. The Dr. told us, Reagan will never walk. She will likely never talk, maybe never smile. They also told us she had a movement disorder called Chorea which made her have uncontrollable flailing movements. The diagnoses kept unfolding during our hospital stay and they were always “so rare” that there wasn’t much research and information out there about what medications could help…especially for a 13 month old.

“Can she learn?” we asked.

She should be able to learn…the other small sections of her brain that are damaged might affect how she learns, but she should still be able to learn.

The neurologist went on to mention that we couldn’t do brain surgery to remove portions of her brain b/c the damage was too extensive. I’m sorry…what? Removing a part of the brain is an actual thing?

Because of Reagan’s genetic, metabolic disorder, when children do have a crisis, triggered by a sickness (she was sick the week before with RSV and in the hospital for eight days), the amino acids build up in the brain and attack this particular portion of the brain, the basal ganglia. And while Reagan was diagnosed at newborn screening and we did absolutely everything possible to prevent this, we just can’t prevent everything. Her body will react how it will react…even if we knew brain damage was happening, there was nothing we could do to stop it. The basal ganglia hit was the most devastating…and any subsequent and otherwise minor brain damage, was due to the three seizures Reagan had.

I will never, ever forget what the neurologist told my husband and I. 

“Your job, is just to make her comfortable. That’s your job as parents now.”

The words have echoed for the almost nine months that it’s been since Reagan had her metabolic crisis.

As I think back to those really, really dark days, and knowing what I know now, I would want to tell myself a few things…such as, Dr.’s don’t know everything. They DON’T! Yes, they are more schooled in the field of medicine and they have experience and have reviewed case studies, but they don’t know everything. They didn’t create my daughter, God did…God knows EVERYTHING about Reagan, so rely on him. Pray harder than you ever have in your life to the Physician who knows what happened in her brain, why it happened, and how Reagan can overcome it.

No one will understand what you are going through. The ONLY person who will 100% understand is your husband. You will need to rely on each other more than you ever have in life. You will get upset and have disagreements, but never turn your backs to each other, always embrace…you two are the only ones who can relate to one another.

People will say stupid things, because again, no one understands what you are going through. That doesn’t mean they don’t care, it just means they can’t quite comprehend your pain, your extremely tough road, and no matter how they try, they are not walking it, you are. Kindly let people know if something is not helpful and let them know how they can be there for you.

It’s OK to not have it all together, no one has it all together (do you hear me? NO ONE has it all together). Talk to a counselor, say the things you are thinking that you feel you can’t say out loud. Say them in a safe environment. Process those raw emotions; your daughter needs you to deal with your pain and loss properly in order to help her overcome her new challenges. She needs you, all of you.

People will also surprise you. Your friends will raise money for you, go to bat for you, call your insurance co. out on social media when they are going back on their word…your family will have a cheerleading section bigger than you can imagine because they love you. They love Reagan.

You will replay the 13 months leading up to Reagan’s crisis and ask yourself over and over if there was something you did wrong, something you could have changed. There is nothing you did that was wrong…you had three spreadsheets for tracking her meals to count every bit of of food put into her mouth for crying out loud! This was going to happen. God had a plan bigger than GA-1 and as humans, we can’t control every facet of life. You. Did. Nothing. Wrong.

God has asked you to walk this ridiculously tough road for the benefit of you, your daughter, other people…you may never know the extent of it. But your daughter will touch lives in ways you could have never imagined. It doesn’t make it easy, but it lets you know there’s purpose, even through pain.

Don’t give up. When you come home from the hospital, it will take you 30 minutes every time it’s time to administer medication, just to figure out what medication to administer. A few months in though, and you will do it in under five minutes. You will figure out the G-tube. And your daughter who used to eat and drink with no problem, will eat and drink again. It will take time, it will take patience, but you will be washing bottles and bowls and spoons again soon.

You’re going to be insanely jealous of all of your friends with kids who are “normal” or “healthy” and typical. But you can’t punish them for the road you have been asked to travel. Your friends still want to be there for you, and because of Reagan, your friends are teaching their children how to have compassion, how to love and how to pray for healing. Reagan is teaching other children things that are invaluable.

Reagan will crawl, she will stand, she will cruise and she will make strides. She will make the strides that the Dr.’s said she would NEVER do…and she will do them in months.

You will have moments where you want to give up. But don’t. You will wonder if all the therapies are actually working. You will go to 204 therapies from May through December. And I can tell you that they are working. All of your exhaustion, sleepless nights, screaming into your pillow that “this is not fair” will make a difference in Reagan’s life.

At the end of the day, it will be worth it. It’s only been nine months since Reagan had her metabolic crisis and she’s touched countless lives, gained many milestones back and still provides joy. She laughs ALL the time with an infectious laugh, one that redeems all the trials. Reagan is a bright light; Reagan is proof that God still performs miracle.

Miracles are hard. They are not always overnight.

Reagan is worth all the hard work, all the tears, all the unknowns…everything you are about to embark on as a result of these new diagnoses will be worth it. You can do it, with God’s help you WILL do it. AND, life has seasons. Hard seasons don’t last forever, they don’t. There will be brighter days, sun will shine, God will redeem what the locusts have eaten, and he will continue to do so. You will smile again, you will have margin in your life again, you will have fun, even though your entire life looks 100% different than you ever imagined, you will love it.

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Photo by Kristen Weaver Photography

To view Reagan’s year in 2014, click the video below.

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Reflections on 2014

I had to make a video to fully share how Rob and I are reflecting on 2014. We hear allllll the time from people at how amazed they are with regard to Reagan’s progress. We are amazed too. I think it’s really important to remember where she was though, what she lost and how much she has had to overcome. I can’t do that in words on this blog, it has to be done in the pictures and videos that Rob and I have captured throughout our journey.

As you watch the video, please know that there are so many painful feelings attached to some of the photos and videos.

The videos from March 25, 2014…Reagan looks up into the trees as the wind blows through it, and as we watch it, Rob and I can’t help but break down into tears. It’s like she’s looking up to Heaven…and she doesn’t know what’s about to happen. Neither do we. It was an impromptu backyard play session where I brought the camera and just let it roll. Three days later, we were in the hospital
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The picture below brings a pendulum of emotions. It was our first hospital visit and Rob’s face is in agony as he pleads to our Heavenly Father and kisses our daughter…praying that we don’t go through a metabolic crisis. Praying that our daughter makes it out of her first sickness. We never knew what a crisis entailed, we just knew it could be devastating. This was on March 28, 2014.
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When Reagan had RSV, we actually went home the next day, only to come back to the hospital around 3 a.m. when she refused to drink her bottle. This below photo is me praying the same prayers as Rob. Reagan was miserable and she was laying on me and I was able to provide her with comfort. B/c of her movement disorder that came after her crisis (and also b/c she’s an almost two year old) it’s often a fight for me to hold her. This was a special moment in time, that I’ll never forget.
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What this photo means to Rob and I was the beginning of something bad. We didn’t know what. We didn’t have results…we were just reacting to things as they unfolded. There were so many tests and no answers. The answers came shortly, and our world crashed to the ground.IMG_8790
After Reagan’s crisis, we took a lot of walks around the lake at Arnold Palmer hospital…this was one of those first walks and after we were told Reagan would never do anything and that our job was to make her comfortable. The walks were filled with tears and praise music in the background, specifically the Hillsong United song, Oceans. We didn’t know why God had called us out into the middle of the ocean where our feet were failing and not able to stand, but nevertheless, it’s where we found ourselves.
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Dr.’s told us Reagan would probably never talk or smile. So when our nurse Tiffany told us we could bring our dog Bauer to the hospital, our neighbor got him groomed, took him to the vet and provided paperwork to make him officially approved within 24 hours. Reagan’s demeanor changed that day…she smiled. She remembered Bauer. She remembered. We could build off of that. She wasn’t fully gone like the Dr’s said.
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News of Reagan’s story spread to this group of mammas on Facebook who are really really into children’s clothing, namely Well Dressed Wolf. I don’t know how many people on the page contributed to this gift basket of clothing, books, cards, etc, but it arrived at our doorstep the day we got back from the hospital, the day before Easter. Some of the moms donated dresses and made sure Reagan had a proper Easter Dress. And the owners of Well Dressed Wolf, Sarah and Shannon, gave us two dresses for Reagan and let us know they were praying for us. The kindness from strangers blew us away. Below is the first day we were home and Reagan looks so beat up from her time in the hospital. She had really been through the ringer and it was really touching to have such amazing and thoughtful gifts from women I didn’t even know and for Reagan to have a dress for Easter.
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Someone also donated this beautiful dress from Well Dressed Wolf (below) and in it, Reagan had her first set of professional photos from her crisis. I was so worried how they would turn out. She did amazing…and Rob was super surprised by all the gorgeous photos Dearly Photography took for Rob’s Father’s Day surprise from me.
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Reagan kept doing things, like sitting up. Things we never thought would happen. And they kept happening.
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I remember the day she kept pulling herself to stand. She did it something like seven times in a row. I sent this to her neurologist and he was amazed.
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I believe the only time we’ve gone to church since Reagan’s crisis was to watch our friend’s baby be dedicated. Unfortunately, kids tend to get sick in the nursery at church…and we can’t risk that for Reagan at this point. I’ve also learned that churches need to do a lot of work to cater to children with special needs…A LOT.
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Anytime we were able to be in the pool, even our little plastic, backyard pool, it was magical. Reagan was in heaven…her love for the water is about as high up there as her love for Bauer.
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I could continue to go on and tell you what each photo and video snippet means to us personally, but I won’t. As I watch the video and the way our lives have unfolded through this year I am speechless, yet at the same time I have so much to say.

Finally, the song by Page CXVI (Breathe on me, breath of God)…is one of Reagan’s lullaby songs on her playlist that we play for her throughout the night. It’s my absolute favorite song on there and whenever it happens to come on and I’m rocking her, it’s like nothing else matters…that song is what I want. Breathe on me…breath of God. Breathe on Reagan, heal her. Whisper your breath into our lives and give us life.

Thank you for following along in 2014. We are hopeful that 2015 will bring more walking, more talking, and other milestones including Reagan feeding herself with a utensil. Our desires are for Reagan to continue moving forward without any setbacks. Our lives are lived at the edge of a cliff with our feet dangling over. It’s so scary at times, and hard, but really rewarding b/c the view is unbeatable.

We hope you can see the miracles that God is performing in Reagan’s life.