Email address of corporate communications: email@example.com // found on this article filed under the tag Bruce Broussard, which is the Humana President.
I posted this blog about our Humana experience in regards to my daughter’s therapy approvals and denials. HumanaHelp on Twitter reached out to me and requested information to help, as did Humana on FB, to which I replied to both immediately. No response was provided. I emailed Bruce Broussard via LinkedIn yesterday (no response, not surprised) and tweeted him this morning. There are some local news anchors pitching our story this morning and I wouldn’t be surprised if it was picked up. The details are clearly documented by multiple hospitals, Dr.’s, etc and the Humana response is deplorable.
In just one day on FB there were 63 shares and 171 likes on our blog, not to mention, it got Humana’s attention, however no one has done anything. I will continue to blitz my daughter’s story until something is done with a favorable outcome…the outcome that was originally promised to my daughter.
Can you do anything? Can you put me in touch with someone who can?
I know the posts have been intense lately…that’s b/c things are intense. I am hoping that this blog post will be the stick of dynamite needed to blow us out of our mine shaft, which is the term we’ve coined for our really tough season of life. This blog isn’t just about our victories, it’s about our struggles.
As a Realtor, my customers have called me a pit bull. If that’s how I am in business…how do you think I’ll be when it comes to my daughter? The term “Pit Bull” seems pretty inadequate.
Below is an email I just sent to our personal nurse at Humana, she is awesome by the way. A series of events have unfolded leading everyone working on Reagan’s care to believe her file has been tampered with. As of last week, Humana was saying that Reagan only had 72 additional therapies authorized, this was confirmed by our Humana nurse, by the rehab place, and by Nemours. However, now, they are saying that even those are denied. Meaning, that all the therapies we’ve had for Reagan in the months of June and July (totaling 81) will be denied. Read the below email I sent and then please share, post, send to a news outlet, I don’t care. Reagan will get the attention she needs and this story will be told.
Subject: Tampering with Reagan Wurzel’s medical records
Rob and I believe Humana has been tampering with our daughter’s records. I am requesting your IT/IS department to pull who has made alterations to our account, and what was made and on what day. An internal investigation needs to be opened into this issue. Here’s the chain of events:
May 22 Notes from Dr. Ried’s office
Dr Ried spoke with a reviewer who authorized 72 visits per specialty, PT, OT, ST, Feeding. until Sept 20,2014. The auth # is 064426015 and the phone number is 800-833-6917. I am requesting the call to be pulled, again.
May 28 – Florida Hospital Rehabilitation confirmation call
Elvira with Florida Hospital Rehabilitation called Humana and confirmed with “Jenny M” that the authorization code was indeed for 72 therapies per discipline. She called in the morning time, please pull the call. If the call on May 22nd didn’t happen or can’t be found, like Humana wants to continually say, then Elvira couldn’t have used the auth code to confirm the therapies with Jenny M.
July 22 – Florida Hospital Rehabilitation call
Elvira spoke with “Ziolata G” to check on Reagan’s account. Ziolata could only confirm 72 therapies for PT under the code 97110. The reference number for this call is 6302813623617. Please pull the call.
July 25 – letter from Humana (date on the letter is July 25th)
We receive a contractual denial letter from Humana stating that we are being denied therapies and that our policy only covers 30. My husband spoke with someone at Humana on July 29th who said this is the second time the letter has been sent, however we did not receive a previous letter and we have been looking for letters from Humana, and we scan every single document from Humana into our computer. The person at Humana that my husband spoke with said they could only see something from May 20. Even if that were true, all authorizations for therapies which were confirmed with two parties (Nemours and Dr. Ried’s office and Elvira with Florida Hospital Rehabilitation) came after that date.
Further points to consider which suggest record tampering:
A Sept. 20th date. Why would that date be provided by Humana? If we have a contractual agreement for 30 therapies, why would they provide a date of Sept. 20th to use them by? The reason: B/c it was not for our contractual agreement, it was for the 72/discipline.
Two providers on two separate dates confirmed with Humana the 72/discipline
Two months later, Elvira decides to inquire about Reagan’s account, and she confirms with Ziolata 72 for PT under the PT code
Now, there is no record of 72 for just PT, only 30 per our contract.
Today, my husband will be contacting the Florida Department of Insurance to file a formal complaint and to request an investigation be opened. Please put me in touch with whatever department handles this sort of thing, and please put me in touch with someone who is the head of the department. I am also requesting for a second time in this email that the IT/IS department look at Reagan’s account to see who changed what, and on what dates and times, b/c there is more than enough evidence to suggest a tampering with our daughter’s records.
While Humana may be audited (and uses this as an excuse to cover up their previous authorization) an audit of Humana is not of concern to us. What is of concern to us is what Humana said would be provided and confirmed by two separate providers. That is our concern.This series of events will not be placed on our shoulders to bear; if Humana made a mistake, if they made multiple mistakes, then Humana needs to bear that burden. Believe me when I say, this will get the attention it deserves one way or another.
Other facts to consider about our previous authorization and confirmation of additional therapies:
Page 22 of our policy defines what is considered outpatient therapies which is limited to 30 total visits per calendar year
Page 25-26 defines what is considered rehabilitation services, this does not limit us to 30 total visits per calendar year and does include PT, OT, Speech outlined
Reagan did not break her leg and require 30 therapies to help her walk again. What happened to Reagan altered her entire life and 30 therapies will not fully rehabilitate her, it won’t even come close. As I mentioned before, when Reagan left the hospital, she was not able to hold her head up on her own. Three months later, she was pulling herself to stand in her crib. The therapies are working, and we are not only requesting Humana to re-instate the 72/discipline, but to do so through the end of the year, since we have had to halt any further therapies until this is sorted out.
Feel free to forward this email along to anyone you see fit and know that I will be doing the same. Thank you for your hard work so far, and I look forward to working with you to resolve this.
Thursday: notification our therapies were being denied by insurance at Reagan’s appointment (vomit)
Friday: absolute denial from insurance for any more therapies for Reagan for the remainder of the year (vomit).
Friday was the day that broke both our backs. I was so mad at God, but I needed him to show up more than ever. Bad report after bad report kept coming in and the stress, anxiety and anger had built to a palpable level. I couldn’t even get through writing the Fumble blog b/c complete disaster continued to meet me, whether it be vomit in Reagan’s crib, a call from our Dr. explaining our insurance denial for therapy, Reagan pushing me away while screaming or her bumping her head after falling backwards in her crib b/c she’s not quite strong enough to stand, etc. All the walls caved in on Friday; the little bit of air and life left was sucked out of us. It has taken this weekend for Rob and I to catch our breath…Saturday was hard, Sunday was hard. Reagan didn’t laugh today until 7:45 p.m. and I feel like some days she doesn’t laugh at all. She used to laugh allllll the time.
The endurance Bible verses take on a whole new meaning now. I used to think, “Oh…endurance, what a great quality!” and I’d have a picture in my head of Usain Bolt crossing the finish line in record time holding his arms up to the crowd as if to say: “did everyone see the race I just ran? How awesome am I?!” Umm…no. That’s not what endurance looks like. We are crawling to the finish line of every day. And I know that tomorrow we will wake up and walk and jog and try to keep pace; but by the end of the day, I’m flat on my face, asphalt in my cheeks and under my nails, as I claw my way to the end of the day.
I asked for contributions to the Reagan Fund on Friday and Rob and I both HATE asking for help in that aspect, that’s why I’ve barely mentioned it since it was set up until now. B/c we are self sufficient people, right? I asked God, why are you doing this? Why do we have to humble ourselves to this point? And I heard him say “so that the love of Christ can be shown to you.” It’s so people can carry us when we can not carry ourselves…it’s so that the church could show up for us. It’s so that you all can endure with us.
And the church has shown up in droves.
Friday night I got word that the most amazing little Instagram shop decided to organize an online auction in August to raise money for Reagan and created an Instagram account to hold it. The responses have been overwhelming and Rob and I are blown away. I don’t even know how this auction is going to work, but I know that people are fighting in our corner and they are rooting for Reagan in an unbelievable fashion.
Tonight, we went on our first family bike ride. Reagan wasn’t sure what to do with her arms, so she put them above her head.
We give great honor to those who endure under suffering. For instance, you know about Job, a man of great endurance. You can see how the Lord was kind to him at the end, for the Lord is full of tenderness and mercy. – James 5:10
Praying for God’s tenderness and mercy to come to our family very, very soon.
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.
Hear the cries of my heart, O Lord my God; listen to my prayer.
Each morning and evening I put on the whole armor of God so can stand against the wiles of the devil, but my spirit grows weary.
Strengthen me; Equip me;
Give me the endurance I desperately need during these times according to your never-ending love.
My storehouses of hope and joy are nearly empty.
Multiply what is left, let them overflow.
Have mercy on me; Have mercy on my wife;
Have mercy on my daughter according to your never-ending love.
From your mighty words this earth was created and all that dwells in it.
You command all; you are ruler over all, there is no equal.
Silence the enemy and destroy his work.
Make your face shine upon us!
Can you please get my order right? Ever since you opened I’ve wanted to love you so much. You’ve treated me really crappy…but I keep coming back. You’re like a terrible ex-boyfriend that I can’t shake. All your other locations have been so good to me. They’ve been consistent, filled my orders properly, had nice associates, etc. My Panera experiences have been all around pleasant until now.
One day I came and tried to order a green smoothie, but you didn’t have any bananas. I asked if you had short bread cookies, they were gone too. Can I have the soup of the day? All gone. What about a breakfast sandwich? Those aren’t served in the afternoon (admittedly, that’s my bad). I drove away unfulfilled and headed to the next closest Panera, who had anything I could have wanted. Other times, I’ve gotten home and my “you pick two” turned out to be a “you got half.”
Truthfully, I really hate complaining at restaurants b/c you know…the spit. But c’mon, we can do better, right?
In the beginning when Panera first arrived on the scene in my beloved Oviedo, I thought these are just our beginning relationship bumps. I’m sure we can work these kinks out and get to a better place.
One day I came in and had it in my mind that I’d be waiting for my order for a while…it was busy, it was Saturday. But then this other random customer was also having a bad experience. She’d waited for an unusually long time and the associate behind the counter making her food said, “we were out of eggs…but now we’re not. Did you want me to re-heat your sandwich?” Understandably, the customer was confused. “What? You’re out of eggs?”, she said. The Panera lady replied, “we were, but we cooked them, so we’re ready to get it on your sandwich now.”
The entire exchange was so confusing. The lady was not thrilled. “I just want my sandwich, how it’s supposed to come.”
“Did you want us to re-press it?”
I mean, who even knows what happens behind that counter, it’s a complete mystery.
“I want it how it comes.”
I thought well, that should be simple enough, and it’s a pretty normal request. Finally, after further waiting and getting nowhere in the conversation, the lady wanted a refund. “I don’t want my sandwich anymore…I don’t know what you’re doing back there, but it’s ridiculous and I’ve been waiting for 15 minutes.”
Wow, so it’s not just me? This ex-boyfriend had already pissed off other people in it’s short jaunt as the new neighborhood restaurant.
Today, I ordered that delicious avocado and egg white sandwich. I specifically requested the avocado be sliced, like it is in your ad that’s proudly displayed at the front counter. I specifically request it, b/c I’ve received it with 1/2 of a large avocado chunk in the middle of my sandwich. When my order is done, the lady behind the counter throws the bag on the counter…given her ugly disposition, I thought I’d ask a simple question.
Me: “Did you slice the avocado?”
Panera associate: “NO! Did you WANT it sliced?!”
Me: “Yes. That’s what I requested and that’s what the picture shows.”
Panera associate: Grabs bag and gives a HUGE sigh like I just asked her to whittle a dress out of egg whites and spinach leaves.
So now she’s behind the mysterious counter, murdering my sandwich. She throws it back on the counter. I open it and it was like she provided all the ingredients for me to juice or something b/c they were just thrown in there.
Me: Motioning to a manager, “Excuse me? Can you please look at this? I mean, give me a break.”
Manager: “Yeah, that’s not how it should look, she put too many tomatoes on it.”
While that really wasn’t the only problem, I did appreciate him agreeing that my sandwich had seen better days. I do think that the Panera staff caught a break b/c 1) Reagan woke up at 5:40 a.m. 2) she vomited at 6:50 a.m. 3) I am tired and have ZERO food and energy inside of me. I was however able to muster up a little sass… as I asked the manager, “why is the girl behind the counter so pissed off that she had to take out all her aggression on my sandwich?”
The manager said he would personally make it for me, and it came out looking beautiful, just like the picture. I thanked him a bunch and he apologized, and gave me a refund, even though I didn’t ask for one. That was good customer service from the manager and I am giving him virtual claps.
But I’m still left scratching my head, b/c I’ve been provided refunds on many occassions, and I can’t help but think you guys have to get your staff trained better. I want all my Panera experiences to be like the one I received from the manager. Kind, understanding, consistent. You know why people go to McDonalds? It’s not b/c it’s good (Ok, the fries are ridiculously good) but people go b/c it’s consistent. They know a cheeseburger is the same in Orlando as it is in Madison, WI, and that’s why McDonalds is at every highway intersection. America knows it can count on you McDonalds!
So Panera located on Mitchell Hammock, please…PLEASE help us to get into a better place. You are one of the few restaurants in Oviedo, and I really want us to like each other all the time. Mmmk? Thanks!
Oviedo resident who REALLY wants to be loyal to my local Panera.
This is a picture of a typical dose of medication morning and night for Reagan.
I am so tired. But more than that…I’m weary. And I know, that this is just going to be a weary season. It will probably last a really long time, too.
Rob and I listened to a sermon on Sunday at our kitchen table. It’s really hard for us to go to church b/c of Reagan’s schedule, not to mention the random vomiting for the past two weeks (I’ll get to that later). The sermon basically said, there are seasons in life, and you could literally be doing everything perfect, and you will never feel like you’re making any progress, or that anything is getting any easier. Nothing sprouts in the winter, nothing blooms, it’s cold, it’s difficult and you want it to end. But unlike nature, life doesn’t move in three or four month incremental seasons. Moses was in the dessert for 40 years, Joseph was sold into slavery and lived a difficult life for 12-15 years before he became the second most powerful man in the world, under Pharaoh.
And on the flip side, you could be doing everything wrong, not talking to God, not trusting in Him, and your life could be a breeze. If you’re in a good season, whether you’re talking to God or not, cherish the easy road right now b/c it will not last forever. It will not last forever.
Back to the vomit, Reagan has been throwing up for two, maybe three weeks, randomly. She’s also been fighting a cold/virus, no one knows for sure. The problem with her throwing up, is it messes with all her levels and Rob and I have try to catch her up on the formula she’s thrown up by guesstimating how much she threw up, and how long after she ate that she threw up. Sometimes it’s in the middle of being fed, sometimes right after, sometimes 30 minutes, 45 minutes, an hour, two hours. Depending on when, depends on what we do. Another fun piece to the puzzle is determining what medication to give to her if she throws up shortly after being given her medication. Some you give again, some you don’t.
Reagan’s pediatrician has seen her twice, everything is clear, even though it doesn’t sound clear and even though she’s got mucus, it’s not in her lungs or her chest. But after two weeks of congestion, her pediatrician decided to put her on an antibiotic, just in case something was brewing. Two weeks of sickness and random throw up, and 5 a.m. wake up calls (multiple times a week) would make anyone weary.
It’s not just the throwing up that’s hard…it’s cleaning it, bathing her and getting her fed again. And sometimes this happens multiple times a day. It’s hard watching her be fed, and then make that face…the face that says, I’m going to lose my food all over my high chair, all over the floor, all over you, Mom and Dad.
These past two or three weeks, I’ve called Rob multiple times to come home from work to help clean/bathe, etc. He probably left work three times one week to help me deal with this. One day, I decided to try and handle it on my own and texted my neighbor that the door was unlocked and if she was able to step into my catastrophe, I’d really appreciate it. She was there in five minutes. It’s practically impossible to bathe Reagan alone. Someone needs to rinse her and someone needs to hold her…it’s pretty hard to do both…although, we have done it. And…no amount of preparation will help…I could have all the towels laid out, the diaper, the alcohol wipe to clean her G-tube site, but inevitably, something will be missed and then a decision about whether you can leave her sitting on the towel on the floor will be OK, or if you have to pick her up and take her with you to get said missing item and hope she’s not jostled too much to throw up whatever else is left. The best is when we’ve just given her a bath at night and she throws up while we’re putting her pajamas on.
After she’s bathed, the formula has to be replenished somewhat…it’s just a cycle and it’s super tiring. Especially if you are doing it at 11:30 p.m. which we’ve done on more than one occasion. So at that point, we’re getting to bed at midnight and Reagan is waking up at 5:30 a.m. on average. I always say there’s no amount of coffee that can help with how tired we are. B/c remember, we’re not tired…we’re weary.
I feel like I should define the word weary…b/c just saying it or reading it, doesn’t do my feelings of it justice.
1. physically or mentally exhausted by hard work, exertion, strain, etc.; fatigued; tired: weary eyes; a weary brain.
2. characterized by or causing fatigue: a weary journey.
3. impatient or dissatisfied with something.
4. characterized by or causing impatience or dissatisfaction; tedious; irksome: a weary wait.
At this moment while I write, Rob is with Reagan at two therapy appointments. Those appointments don’t stop, no matter how fatigued we get…those appointments are kept.
This is the season of our life. It is hard, we get sad, we get mad, we (mainly me) have outbursts and want to bang our fist into our chest and scream at the top of our lungs up to Heaven, WHY?!Why are you doing this? Why are you making us go through this? How long is winter going to last this time?
The sermon ended by asking us to “remember.” Remember when God showed up last time? Remember when God was there during your last season of drought? Remember when God helped you pay your bills when you didn’t know how that was going to happen? Remember when God reconciled Joseph to his brothers, the ones who sold him and left him for dead? Remember when Joseph ran to his father and hugged him and cried b/c he was so happy to see him. And he was so happy that the last piece of “winter” in his life was made into spring. Remember when Jesus came to save all the lost? Remember when he died and everyone thought all hope was lost? Or was it? Remember when God raised him from the dead? When things looked most bleak, that’s when God showed up and turned everything upside down.
Yea though I walk through this valley of life, I will not fear.
For I know God loves me and that
his thoughts toward me outnumber the sands on this earth.
In these valleys, The Lord is near.
And he has told me that he is preparing a place for me.
No eye has seen or heard, or mind has imagined
what God has prepared for those who love him.
[mini psalm by AM. Psalm 23, Psalm 139, John 14, I Corinthians 2]
Revelation 21:3 I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them.He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”
I was challenged to write a Psalm for Reagan to help process, heal, etc. Rob and I will be writing Psalms as we journey through this phase of life and sharing them here. This is my first Psalm.
The rain has come, it’s the worst storm of life, and you have brought our worst fears to our face. How many years have we prayed and waited, only to have been given a storm that we cannot see through. The clouds lift, a light shines in, another cloud darkens the light.
Where we should find safe refuge, we find foes hiding and waiting to destroy us with harsh words. Where we should find peace, we find a war, where we should find joy, we find hardship. Remove our enemies and give them no shelter in our landscape.
Please God, save us from our nightmares. Heal us of our pain, bring unimaginable joy to our lives and hearts.
When you show up our burdens lighten. When you appear, clouds lift. When you speak, mountains move. Remove our mountain, make our road clear, beautiful and bright. Full of optimism and future.
Jehovah rapha, come and dwell in our home. Heal the broken. Why am I not receiving if I am asking? I am asking! Heal our daughter, make her brand new, make her strong, let her fly high, like on eagles wings. Be our great physician and heal ALL our wounds. Let the tip of your finger just glide across our daughters wispy hair and bring her back to full and abundant life. Keep her well, keep her healed, protect her under your wings.
Be near to us, oh God. Let our hope and trust be in you. For in you is all knowledge, power, might, healing and love. And we pray these things upon our lives and upon our daughter. Amen.
One day as I was driving, I had the thought to do GA-1 spotlight blogs about other families who are living in the world of a GA-1 diagnosis. These are families that I have met through a GA-1 support group on Facebook and they have given me permission to tell their story. I asked several questions to get to know them and their story so that I can share it with you.
My goals in doing this are: 1) to bring awareness of GA-1 to the forefront 2) to make people more comfortable and accepting when we see children or adults with disabilities 3) To promote medical research in the scientific community for GA-1 and 4) to educate people. You can also pray for these families when you pray for Reagan. GA-1 is a relatively unknown disorder, it lives in the shadows of life and when our little ones get sick and go to the hospital, we are educating the hospital staff…it should not be this way. We need people to understand this disorder and this is my way of helping to bridge that gap.
Meet Melissa, or as her friends call her, Mellie. She’s a beginning runner, amateur photographer, Starbucks aficionado and has a full time job that she commutes to. She’s rather shy and introspective, so I’m SO glad she’s opened up her incredible heart to help bring awareness to GA-1. She has two children “J” is five and “C” is two. Her and her husband are loving parents to these two cutie pies and this is her GA-1 story.
You may look at this picture and figure it’s obvious that one child is affected by GA-1. But what might surprise you is that they both have the rare inherited genetic disorder, GA-1. This disorder does not play favorites and affects people completely differently which is why more research and awareness is needed.
AM: When did you first find out about the GA-1 diagnosis?
Mellie: I first learned of the possible diagnosis for my son a few days after he was born. I got a voice message from a doctor saying he was calling about newborn screening results. I had a strong feeling that something was wrong…and when I called back, he explained that he had screened positive for GA-1. He said there was a 90% chance it was a false positive, and I held onto hope until we received the confirmation when he was 10 days old and he called again.
AM: What was your reaction to the diagnosis confirmation?
Mellie: When I got the confirmation phone call about my son, I asked the doctor if he was SURE because one of the test results hadn’t yet come back. He said that he was. I knew there were dietary implications so I wanted to know how to proceed from getting the diagnosis. I was doing my best to nurse him while supplementing with formula, but he wasn’t quite getting the hang of it. We made arrangements to meet the next day and he said to carry on as normal for the moment. I hung up and immediately called my mom and husband. I told my mom that we got the confirmation, and “it wasn’t good.” They both arrived to the house in record time, and while I waited, my dad happened to call. I remember crying and telling him our son had a really bad disorder and he might be really disabled and he might die…I was still on the phone with him when my mom got there and they spoke briefly, but I heard none of their conversation as my mind was simply whirling and twirling. I don’t even remember where my baby was during these moments, hopefully sleeping.
AM: What are some moments in receiving that information that you’ll never forget? For instance, memories that are embedded into your mind forever during that time?
Mellie: I can still feel the tears on my cheeks and my runny nose as a very visceral memory. The next day, we traveled to the hospital a couple hours away with our son and my mother, as support, to meet the team and ask questions. On the team when we got there were a geneticist (the one that had called us), a genetic counselor, pediatrician, nurse, and I don’t remember who else. Seemed like there was more… I remember thinking, wow it really takes a VILLAGE and we have one. I was also thinking that no one is guaranteed a healthy child, with no challenges ever in life. I thought: “Some kids get hit by buses. This is our bus and it got here early.” The first several weeks after I was depressed but in “go” mode and trying to take care of what needed to be taken care of.
AM: Since receiving the GA-1 diagnosis, how has that affected your daily living/family life? And if you have other children in your family, how have they been affected?
Mellie: For my second child, we opted to get tested prenatally so we could be prepared mentally and physically. We knew we had a 25% chance of her having GA-1 as well, although odds were in our favor that she was unaffected. I was so sure that she would be in the 75% that would not be affected. But I reasoned with myself that if she did have it, we would be in the perfect position to care for her since we knew so much about GA-1.
AM: Does your daughter have GA-1?
Mellie: As it turned out, I was wrong about her not having the diagnosis. And, I was very, very sad about it, much more so than I expected. When I got the call, I was 19 weeks pregnant. The counselor that I had met with knew that the reason we wanted the amnio test was so that we could prepare for her birth if it turned out she had it, and put our minds at ease if she did not. So it really sickened me and saddened me when she unexpectedly offered that we had a possibility to select medical abortion up to 22 weeks. I don’t understand why she suggested that. The pregnancy itself was going well. She knew my son, as she is his genetic counselor, and how awesome he is (in spite of his disabilities that did result from GA-1). She knew me and my wishes…. so why would she offer this to me when I had already fallen in love with my daughter and celebrated the sensation of her kicking in my belly? It was ridiculous and very, very upsetting. I got over it, as best as you can, and we moved on. After getting off the phone with her I called my husband and told my boss I was leaving work for a few hours. I went shopping and purchased her first baby clothes. I was determined to try to not let it worry or upset me, but it still did, for a while. We carried the belief that we would have a solid plan for her when she was born and throughout her life to minimize the risk of complications.
AM: You mentioned your son had complications and some disabilities related to GA-1, can you tell me about that and tell me a little more about him?
Mellie: Through our son having this diagnosis, we were suddenly and unexpectedly catapulted in the world of special needs parenting against our will. My son never met his developmental milestones on time. I noticed when he was an infant that he seemed unusually stiff. He had difficulty with tummy time, he hated it, but more than that, he had difficulty holding up his head. At first, they said it might be because of his unusually large head. You see, for kids with GA-1, a large head size is a marker of the diagnosis and he was above the 99% mark with his head circumference. I knew it was more than that though.
I was successful in calling our regional center and getting him assessed for early intervention services. He qualified and we began the process of having occupational therapy, and eventually, physical therapy. Another mom with a child who also has GA-1, who lives across the country, gently suggested to me in a phone call that he was showing signs of dystonia as his hands were almost always fisted. I asked our pediatrician for a referral, and we saw a neurologist, who confirmed that suspicion. He was 8 months old at that point.
Now, at age five, he continues to need assistance with many activities of daily living. He is not potty trained, and while he eats by mouth, he needs assistance with feeding as his dystonia affects his fine motor control, and he is not able to hold his own fork, or spoon, for more than a few seconds at a time. He is not able to sit up independently, or walk, or dress himself. He has subsequently been labeled with a diagnosis of cerebral palsy, no new brain damage, just a new “label” that gives him access to more services. He enjoys diving face first into a plate full of food, and has learned to drink from a straw and a thermos style cup placed in front of him on a tray or a table. He can roll, scoot and grab things. His hands are much less fisted then they were and he is getting better control over opening and closing them with intention. His speech is delayed and he is hard for others to understand. He speaks almost as much with his eyes as he does with his mouth. He loves to laugh and is super funny, intelligent, affectionate and kind.
AM: Did your son ever have a metabolic crisis?
Mellie: He didn’t have a defined moment where he had a “crisis.” At times I think it could have been prenatal. His early difficulties with latching, being stiff, and throwing himself backwards (rather than nursing) may have been signs of a crisis. However, I believe, that it may have been from an illness. Just two days after his GA-1 diagnosis, he got RSV and ended up hospitalized at just 2 weeks old, and I don’t believe was properly treated. When we first took him in that morning, we were dismissed. Even though we had his diagnosis, the pediatrician we saw (who incidentally had never heard of GA-1) told us that we were overzealous new parents, and that he just had the sniffles and to go home. They taught us how to suction his nose. Later I was able to get ahold of the geneticist who told us to get back to the ER. Once there, it took them four hours to put an IV fluid in him. Dehydration is very bad for kids with this disorder, and I believe the Dr.’s actually allowed him to get dehydrated that day. We didn’t get told he had a “crisis” at that point, and yet, I think he did. At times I think about getting his medical records from that stay. I think I might find some evidence and sue them, but what for? It just makes me get angry and it won’t change anything. We probably wouldn’t win. And winning wouldn’t make all this better because even winning can’t let us have a do-over.
AM: What does your daily life look like?
Mellie: Our lives now involve ensuring their daily nutrient needs are met, which involves a lot of planning with their meals and preparing ahead of time when we are out of the house. We try to make our lives as normal as possible and make the world as accessible as possible for our son. Both our kids have started in preschool. We avoid certain things in the wintertime, such as indoor play areas, but we largely have a normal life. We have therapy twice a week for my son, and regular lab work, clinic appointments, and are followed by neurology. We also do therapy at home with our son, including trying to get him into a standing frame seven days a week, in his gait trainer, stretches of his legs, shoulders, ribs, and oral motor therapies.
AM: Tell me about your daughter.
Mellie: One thing that was different was that while I was able to nurse my son occasionally as a newborn and supplement with the special GA-1 formula, I was not allowed to nurse my daughter at all. I think they decided to be more conservative that time around. She’s now almost three, at that “golden” age where the risk starts to decrease more. She did have some gross motor and speech delays early on. She walked on her knees until she was 19 months. You would never know it now; somehow, light bulbs just started flashing for her and she has completely caught up to her peers with her development, and she is very bright, funny, and loving like her brother. I don’t like to think of the possibility that her developmental gains could be taken away in an instant, even though, intellectually, I know that’s a possibility. I would rather just celebrate where she is today.
AM: Tell me something you found to be challenging while having two young GA-1 kids?
Mellie: We had to ensure that they had enough hydration during the night and for several months we fed them every 3 hours during the night on the clock even if that meant waking them up (which it almost always did). That was very exhausting and challenging knowing how much their overall well being hinged on their nutrition, much more than most babies.
AM: What is something you wish people knew about your whole experience?
Mellie: I wish people would know that there is nothing heroic or amazing about what I do for my kids. Telling me that I am amazing is not helpful because I don’t accept it. I would rather not be amazing, and would rather be ordinary with ordinary problems, not problems like worrying if my kids are getting brain damaged every time they are sick, or whether my son will walk one day or live independently. I am just a mother, like any other normal mother; doing the best I can to do my very best for the kids. It’s rather normal. At times, I fall short of my expectations, feeling like, I HAVE to be AMAZING. But I try to just pick myself back up and strive to do my best rather than perfection. Any of you taking the time to read this would do the same.
AM: Thank you for opening our eyes to your GA-1 experience. Can you tell us a little bit more about yourself?
Mellie: I’m a beginning runner, amateur photographer, Starbucks aficionado and a full-time employee and commuter. I’m often shy and introspective around those I don’t know well, but I’m proud to say that I have been coming out of my shell since becoming a mother. I don’t sweat the small stuff, and I roll with the punches, but I often worry that I worry too much about things beyond my control. I’m a working mother to my loves J (5 years old) and C (2 years old). My hubby is my partner in more ways than one; he gets the morning shift with the kids, and I get the evenings, due to our opposite work schedules. He offers optimism, when I’m afraid, and I heap on a dose of reality, if he isn’t afraid enough. We are learning and growing both as people, partners, and as parents, constantly. Our children were born with a rare, inherited, genetic disorder. This condition has caused our son to have multiple disabilities, but has not affected our daughter in the same way. We know life could change in an instant, especially in light of their rare diagnoses (which can cause neurological damage especially in the first six years), but instead of waiting for the other shoe to drop, we choose to enjoy each day as best as we possibly can in our new normal. Becoming a mother has made me a better person. To follow more of Mellie’s story, click here.
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