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.

What a Difference

What a difference a year makes!

You hear people say that all the time, because in hindsight, problems or circumstances can be completely different in a year. What we don’t often hear is what a difference three years makes. Because that seems like an eternity, and it’s too hard envision all the work that will have to happen between now and three years from now. Can’t it just be a year of work and everything get neatly tucked into place?

God does some of his greatest work in the struggle of the desert. You might not think God is in the desert, especially if you’re relying on your own faculties to get through it. The beauty of the desert is there’s NO way you’re going to feel fed or watered unless you look up to who can provide that. The desert is survival mode for everyone and everything. But the desert is also where God is most relied on and where he’s most desired. I think that’s why he puts us there to be honest.

The desert is for two things 1. developing something within us or 2. releasing something that has a grip on us.

Do we need to develop perseverance, conviction, trust?  Do we need to release control, possessions, pride or something else that’s not helpful? You can’t hold on to unnecessary things in the desert, because if it’s not helpful for survival, it’s dead weight and it has to go. The only thing you can hold on to is Jesus, the desert makes it abundantly clear who you need and where your eyes must shift in order to gain strength and hope.

Three years ago

We would pack up Reagan’s walker and go to the mall. Reagan couldn’t walk straight and being on wheels would sometimes make her push off her feet and go in circles, which she found hilarious. To be fair, it was super cute and funny but it also made me wonder, will we ever be able to walk the mall together? Three years ago she could only walk the length of about four or five stores and we couldn’t go into any stores because they’re not set up for a child in a walker who has trouble going straight. Honestly, my soul hurt so bad to go to the mall when we had to bring the walker. I had to mentally prepare…we will get stares, children will point and look to their parents for an explanation. The parents will look at us and shrug as if to say, “I don’t know what to say, please forgive me.”

Today

Reagan is walking the mall back and forth, going into any store that looks interesting and having a GREAT time. This photo is angelic. Her shadow reminds me that angel armies have been protecting her, God has held her and us while we’ve been in the desert, and as we emerge into a land that has the fruit and riches of hard work, it is different than we expected, but we are here, still on the path God set forth; we didn’t arrive on our own strength or laurels. God paved the way, God gave us the strength so let me credit who it IS owed to so you know what I mean when I say, what a difference three years makes.

If you’re in the desert, please don’t give up. There are things you can only learn and develop within yourself while you’re in the desert. There’s no other place quite like the desert to learn perseverance or trust. There’s no other place quite like the desert to develop the amount of empathy or understanding God would like to see in you. You may want to rush it, but the desert is arduous, designed that way for you to stop trying to fix things on your own and rely on God. This process can’t be rushed and neither can gaining the character traits that are being developed inside of you.

Seasons

Remember, being placed in the desert is a season, being placed in a meadow with flowers is also a season. There’s something to be gleaned from each season of life that God puts you in. I can look back to the harder seasons and while I didn’t love being there, I can be thankful and grateful for what I learned there. Keep going. Better seasons are ahead my friend.

 

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)

The Well

God has been stirring in me for a while. There’s a lot I want to share; it requires a lot of boldness, which I know I have, but this feels like a lot even for me.

A couple months ago, a friend of ours told us of a man who has a healing ministry who was going to be in the United States this year.

“He’s coming in July,” Bert said, “and I want us all to go and take Reagan.”

Rob and I looked at each other and immediately said “We’re in!” practically in unison.

So preparations were made, a posse was put together to take our daughter to a man who is known to have a gift of healing.

Pause.

I’m terrified to put this on the blog for lots of different reasons.

What if God doesn’t show up?
What if God doesn’t heal her in the way we want her to be healed?
What if we come home disappointed?
What if nothing changes?
What will people think?

I can’t care about what people think…and maybe that’s the thing that’s driving the rest of the list, other than fear and worry. Worry that I don’t have enough faith or belief.

Mark 19:14-29 has been on my mind. There’s a boy’s father asking Jesus to help his son who is possessed and has been robbed of his speech. The boy’s father is literally at his whits end and asks Jesus to have pity on them and heal his boy, “if you can, Jesus,” he says. 

IF? Jesus repeats it back to him as if his question was as ridiculous as asking if LeBron James can jump high…of course LeBron can jump and of course, Jesus can heal.

“‘If you can’?” said Jesus. Everything is possible for one who believes.”
Pool

EVERYTHING is possible.

1. Walking – a prayer that has been prayed over and over, it has been answered.
2. Eating – a prayer that we’ve prayed and continue to pray. Her appetite for food has never been bigger!
3. Getting off the g-tube for feedings – the feeding pump has been put away in another room and not taken out for almost a month. She drinks all her formula. Some days it’s more of a struggle than others, but she accomplishes it and has been doing it for weeks.
4. Potty trained – I still can’t believe I can write that.

Each time Reagan would do something new, we would praise God in wonder and amazement because it would be another thing the Dr.’s were so wrong about. But, is it too bold to say, we want more Jesus…?

Red stripe suit smile

Should we be satisfied with what’s been restored? Or should we keep pressing in, asking for more, asking for 100% wholeness.

In Mary Healy’s book, Healing: Bringing the Gift of God’s Mercy to the World, she says: “Nowhere do the Gospels record that he instructed a person simply to bear the suffering assigned to them. In no case does he indicate that a person is asking for too much and should be content with a partial healing or no healing.”

Healy goes on to say that when “reading the Gospels one gets the strong impression that Jesus was not only willing but eager to heal.” The scope of his healings were unlimited.


“So the news about Him spread throughout all Syria; and they brought to Him ALL who were sick, those suffering with various diseases and pains, those under the power of demons, and epileptics, paralytics; and He healed them.” – Matthew 4:24

“When evening came, they brought to Him many who were under the power of demons; and He cast out the evil spirits with a word, and restored to health all who were sick [exhibiting His authority as Messiah]” – Matthew 8:16 & Mark 1:32. (Mark 1:32 states a steady stream were brought to Jesus and he healed them all.)

Jesus went through all the towns and villages, teaching in their synagogues, proclaiming the good news of the kingdom and healing every disease and sickness.”- Matthew 9:35

“And when the men of that place recognized Jesus, they sent word to all the surrounding country. People brought all their sick to him and begged him to let the sick just touch the edge of his cloak, and all who touched it were healed.” – Matthew 14:35-36

At sunset, the people brought to Jesus all who had various kinds of sickness, and laying his hands on each one, he healed them.” – Luke 4:40

“and the people all tried to touch him, because power was coming from him and healing them all.” – Luke 6:19


Back to my above list of fear and worry. When I look at what God has done, I know that God shows up. I know that Jesus heals. I know that God doesn’t disappoint. And I know that anyone Jesus has an encounter with is forever changed. I point back to what God has done, to know that he’s faithful in everything he does.

Ever since we made the decision to take Reagan to this man with a healing ministry, I’ve felt exactly like the parents in the Bible who brought their children and pleaded with Jesus to make them whole.

Daddy and Reagan

What lengths will a Father go to heal his children? Not just Reagan’s Father, but our Heavenly Father?

I think of Jairus’ story in the Bible; he was a well known and respected leader in the synagogue. His daughter was dying and he pleaded with Jesus to come to his house to heal her. As Jesus began to make his way, another woman who was afflicted with a bleeding issue for 12 years, touched the fringe of Jesus’ garment and was healed. In the commotion of that, Jairus’ receives word that his daughter is dead and his friends tell him not to bother the Teacher anymore.

“Overhearing what they said, Jesus told him, “Don’t be afraid; just believe.” – Mark 5:36

Jesus is like, let’s roll Jairus…we’re going to your little girl.

“he took the child’s father and mother and the disciples who were with him, and went in where the child was. He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”).  Immediately the girl stood up and began to walk around (she was twelve years old)” – Read the whole story here

For weeks, I’ve been thinking of all these stories. And then doubt would creep in and I’d think, “Yeah, but that was Jesus walking on earth, when people could touch his garment and be healed.”

This morning, while I was getting gas in my car the Lord spoke to me and said,

“Does the Lord’s well run dry, Anne-Marie?”

No. It doesn’t, Lord. Your well is never dry, your hand is never far from those who love you. And we are bringing Reagan in faith, and asking everyone reading this to pray for a 100% healing. The thing about faith, is in order to have it, you have to act upon it. We are going, as an act of faith. And further, this is the same Lord who imparted his power to us as followers of Jesus, who gave humans the power to heal, through the Holy Spirit and our faith in Jesus.

Here’s what I am dreaming of…I’m dreaming of Reagan being healed and saying, “You told me God would help me talk, Mommy and he did!” I’m dreaming of Reagan telling people herself, with her own words, how she was healed.

Every night we pray for Reagan to be able to talk. I ask her, “who well help you talk, baby?” and she points to her heart and says, “God” because she knows that’s where God lives, right inside her sweet little heart. She has that child like faith that God values so much and wants us all to have. What if her faith moves Jesus to heal her in an instant? Fully and completely, not just talking, which is what Rob and I want so much, but everything. There’s so many things that were taken from her…we list the big things, but everything is big when it’s been taken away and given back slowly. Wholeness. We want wholeness.

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There are five of us going on this trip bringing Reagan as an act of faith and hoping for a miracle. I feel like the paralytic man’s friends who heard Jesus was in town and four of his friends carried him, for miles probably, so he could be healed. They get to the house Jesus is at and wouldn’t you know, everyone else in town heard he was there too and it was standing room only, you couldn’t even get to the door. So these friends, tore the roof off and lowered this paralytic man right in the middle, right where Jesus was preaching…laid this man at his feet. Jesus was moved by the faith of this man’s friends and healed him.

“But I want you to know that the Son of Man has authority on earth to forgive sins.” So he said to the man, “I tell you, get up, take your mat and go home.” He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, “We have never seen anything like this!” For the full account, read Mark 2:1-12 here.

I want Reagan’s tongue to be untied like this guy…

Then Jesus left the vicinity of Tyre and went through Sidon, down to the Sea of Galilee and into the region of the Decapolis. There some people brought to him a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.

After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him, “Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly. – Mark 7:31-35

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I know all of these stories are of Jesus healing, so for those who are uncomfortable with other people’s gifts of healing, there are multiple stories in the Bible of the disciples healing people but there’s one story in particular I want to point you to.

Acts 3

Peter and John healed a man who was lame since birth. He’s begging at the church courts, asking for money. Peter basically says, dude, I’m broke, but I’ll give you what I do have. In the name of Jesus, walk.

Acts 4:22 said that man was over 40 years old. FORTY! Surely his entire body was atrophied and his feet were likely deformed.

Peter helps this man up: “Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.”

Don’t you think Jesus passed this man on multiple occasions? Why didn’t Jesus himself heal this man? Because Jesus loves to involve those who follow him in building the kingdom of God, and Jesus also imparted the power and gift of healing to his disciples and followers. It’s faith in Jesus that these miracles occur. It wasn’t Peter’s power the lame man was healed. Just like it’s not this man’s power with a healing ministry who we’re going to, but Jesus’ power in him; and I think it’s very important to mention that this man gives all credit and glory to Jesus alone. It’s through our faith in Jesus that Reagan is able to be healed.

You know who else had a healing ministry? Peter. The rock Jesus built his church on. Plain and simple, this is the power of the Gospel, and I need to remember that when we take Reagan for healing.

As a result, people brought the sick into the streets and laid them on beds and mats so that at least Peter’s shadow might fall on some of them as he passed by. Crowds gathered also from the towns around Jerusalem, bringing their sick and those tormented by impure spirits, and all of them were healed.” – Acts 5:15-16

Please join us in praying for a complete healing and restoration of Reagan this July. Pray that Jesus takes command over the things afflicting Reagan and heals her completely. Our requests are not too much for God and his well is never dry.

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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.

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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.

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Dr. L, Reagan and Mommy.

Fumble

It’s 11:00 p.m. I open the door to Reagan’s dark room and step on the wood floors, hoping they don’t creak too loud. Rob walks in behind me, IV pole in hand…four little paws tap behind Rob.

Reagan’s room is dark. The ocean sound machine is on, and her lullaby playlist, that we’ve played for her since she was born, is on repeat. As I unhinge and lower the top portion of her crib, she moves and makes a noise as if it’s startled her a bit, even though, this is part of her routine. She sighs as if to say, “not again…”

I gently pick her up, she makes a noise and plops her head on my shoulder. Rob has a blanket ready to put on my arm that her head can rest on. She likes to lay her head on the blanket, it’s more soft and comfortable than my arm. Like Rob has done for the past 3 1/2 months, he hooks Reagan’s G-tube up and presses the feeding pump to begin feeding and lays a blanket over us.

We are both praying internally for this feeding to go well. She’s been vomiting on and off for three weeks. She has not gotten enough liquid the past couple days, her lips are dry, and we are worried that she is becoming dehydrated. As I sat there and rocked her, I thought it smelled like formula coming from her nose. I found it odd, but drifted to sleep rocking my sleeping baby.

Thirty minutes later, the machine beeps. Her feeding is complete. Rob told me he was thanking God during those thirty minutes, thanking him that Reagan was tolerating her food, was able to take the entire 7 oz without waking up. He comes to take the blanket off and it’s wet. He goes to remove the tube, and it was never hooked completely in. Reagan’s clothes are soaked…and so are mine.

This is a snippet of life. No matter how hard we try to do things right, they just end up a soaked mess. Now the question is, do we feed her while she’s in her wet clothes and sleeping? If we do that and change her after her feeding, she could be too full and throw up. Ok, so do we change her now and hope she stays asleep for round two of feeding? Basically we came to the conclusion that our girl should not be sitting in wet clothes, so change her we did.

She woke up. The feeding did not go well. I didn’t know if she was uncomfortable with the feeding, or if she was just upset that she was awake, but we stopped it short of 4 oz. We debated, do we keep going and risk vomit, or try to keep this small amount of liquid in. We chose for her not to vomit. She did not get enough liquid that day, she threw up, and discarded 4 oz of formula, after we already lowered her formula recipe an additional 4 oz. that day.

In the morning, her diaper was dry. Her lips were even more dry. We gave her Pedialyte in the morning, along with 5oz of formula. We know the signs and it’s all she could handle. After her morning therapy sessions, I came home and gave her two more oz. Breakfast was finally complete, at 10:30 a.m.

She kept all her food down on Thursday. But it required us splitting every single feeding up. Last night, we fed her 4 oz, and then stopped, and I rocked her for 10 minutes. Then, another three went in, and she went to sleep.

Do you know what it’s like to have your child’s life confined to a perfect balance of fluid, calories and medicine. There seems to be no room for error, yet, nothing is going right! There is error all over the place. Her geneticist spoke with me yesterday, she was concerned that her intake was not enough.

Me: Dr. C, can Reagan have another crisis if she doesn’t get enough?

Dr. C: Yes, and that’s why I’m concerned. She needs to keep her formula down. If she doesn’t keep it down today, you will have to go to the hospital and get fluid via IV.

Reagan kept her formula down. She was also prescribed a medication to help move things along. Part of the problem, she was getting too full. B/c of the low tone her body now has on the outside…we are realizing she also has low town on the inside. The body part that keeps your food down and gives you the ability not to vomit, is not very strong for Reagan. The parts of the body that help move food out the other way, is slow and not working like it should. I feel like her body is failing her in so many ways. But, this new med she’s on to help strengthen her insides to work right has seemed to do it’s job. It’s her ninth medication and she gets it three times a day.

As I typed the above paragraph, I look at the monitor and Reagan is waking up from her nap, it’s 11:20 a.m., it’s two hours since she last ate, and she’s laying in a puddle of vomit.

Just when we think things are maybe improving, and this new medication will work…and we’ve split up her feedings over hours and into less volume, there we are…with formula all over the place, fumbling in the dark, just like the other night. It’s every. single. day.

That’s one issue.

Yesterday I received notification from Reagan’s therapy place that even though our insurance co. confirmed with our Dr. that they were allowing 72 therapies per discipline, and the rehab place also verified, that what Humana really meant, was 72 total. The problem with that line of thinking is that the rehab place called to verify that benefit, and as a result of satisfactory verification, they scheduled Reagan to have 11 therapies a week. We have had 81 therapies since the end of May, which is above the newly approved amount of 72 total. We are now self paying. And this is what the Reagan Fund is all about…and we will now be tapping into it. Please consider donating. Reagan’s Dr. that oversees her therapies is working on getting another approval…but she’s retiring on Friday. Yeah, as in a week from today. And the closest Dr.’s are in Tampa or Jacksonville. We can see the Dr. in Tampa at the end of October.

UF Health in Jacksonville has refused to return my phone calls and we have resulted in playing telephone through an intermediary answering service at that location. I resorted to letting them know I’d be calling hourly, which seemed to work in getting them to relay a message. I have called every single day for one week, and have been told the same thing for a week, “someone should call you tomorrow, if they don’t, call back.” Apparently, daily calls weren’t enough, I had to call hourly. Here’s the message from UF Health “The Dr. was out, but given that Reagan’s case is complex (please note, this is the Dr.’s specialty)…the Dr. will have to take some time in responding as she considers Reagan’s case.” My response: “That seems like a vague way of saying you are not interested. In addition, no one from this Dr.’s office has contacted me to ask ONE question about my daughter. I agree, her case is complex, but this is what the Dr. does, and all I’m trying to do is schedule one appointment, and NO ONE has called me personally to talk to me. I am met with this wall of resistance and the game of telephone.” Maybe, that’s God trying to tell us that this is not the place. But waiting until October? Really?!! Who will help us overcome these insurance obstacles, who will write prescriptions for walkers or standers for Reagan? Who will answer the phone call if our insurance co. calls after our current Dr. leaves next Friday?

We can not take much more. When we think God is showing up, it doesn’t seem like he is. That is the reason for our Psalms. That is the reason for our despair. The most basic of things, feeding your child, we can not do. We do everything we think is right, it’s not working. How did God feel like we were the best parents for Reagan?

After I wrote all of this, I got a call from Nemours…our insurance co. has denied any  more therapy for the remainder of the year. They will not pull the recorded phone call btw Humana and Reagan’s Dr., b/c they say they don’t have a record of it (conveniently). However, through that phone call, an authorization number was received AND used by the rehab place to confirm benefits and to schedule 72 therapies per discipline.

To say Rob and I are upset, mad, frustrated, at the end of our whits, with no clue what to do is quite an understatement.

A lot of people ask what they can do to help. I do not know how to answer that question. I keep saying to pray, but everyone has been doing that and here we are…at the bottom of our little mine shaft. I guess I can say you can donate to Reagan’s fund so that we are not stressed further by the financial impact this continues to have on our family. But realize there’s nothing you can do to fix this. There is nothing we can do to fix this. There’s only one person who can fix this, and I’m currently really mad at him.