Well, not really. Summer lasts forever in Florida and there have been a few exceptionally HOT days! Perfect time to break out the backyard pool.
Words don’t even do these photos that Rob took any justice. But, I will say, that when we put Reagan in this pool…I watch her and think to myself, “she’s just like a typical 18 month old” and it makes my heart soar. She splashes SO much, and crawls around, she stands up, she tries to flip out of the pool. It’s so awesome. I want to remember these days forever…I am so thankful for good days.
There have been even more good days as of late b/c Reagan is now drinking out of a sippy cup, she started this a couple days ago…really after the last blog update and our prayer that we shared with you for her body to begin working like it should in regards to eating, drinking, swallowing and not vomiting. The prayer is answered and continually being answered as she continues to improve. Not only is she drinking water, she ate some mashed potatoes, and she’s been BURPING! Burping!! I have never loved the sound of a burp as much as I do when it comes out of Reagan’s mouth.
So so thankful for God answering our prayers. Reagan is a miracle. She is a miracle. If you have a hard time believing there is an omniscient God who can do things beyond our capabilities…it’s OK. But then I challenge you to look at Reagan and question God, and ask “how is this possible?”
“God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams!” [Message translation] Ephesians 3:20
There is no reason you can’t believe in miracles too.
Did you catch my reference in the title? Yeah…throw up. I figured if I had a title that was straight up referencing vomit, you probably wouldn’t read. But this post isn’t just about the mystery behind Reagan not being able to keep her food down, it’s going to be a mega update of what Reagan is doing, what she’s working on, where we’re going, etc.
standing and swinging…no big deal.
So, Reagan is crawling now. Yep…crawling.
Crawling requires a lot of hand and eye coordination, and I personally think, it’s a little harder than walking…I have no evidence to back that up, it’s just my opinion. If it were easier to crawl, Reagan would have done that before pulling to stand and cruise around her play pen.
Speaking of the play pen, Reagan had her crisis in the play pen. We took it down a few weeks after we came home from the hospital. It was so sad to look at…no one was playing in there, no one was laughing, it was just a terrible reminder of that day. When Reagan started pulling herself to stand in her crib, we thought it might be a good idea to break the play pen back out. It has been amazing. She loves being in there…I have a zillion toys in there, and all she wants to do is work. She wants to stand and look out. She wants to Ace Ventura around the corners. She’s falling better, picking herself back up and basically working it out in her play pen.
Reagan is on point!
Her movements have gone down. Rob and I feel that’s due to prayer more than anything else. The medication hasn’t changed, it’s actually decreased b/c we felt it could have contributed to her vomiting.
We added in another appointment to our weekly routine b/c there was this empty space of time where we were twiddling our thumbs so we had to fill it, right? Reagan now goes to the chiropractor. She gets adjusted. I spoke with a friend from college who’s a chiropractor out of the area and asked if he felt it would be beneficial for Reagan and he did. He referred me to a local chiropractor who specializes in babies. She explained that the spine basically carries instructions to the body from the brain, so it will help Reagan tremendously if it’s all in line. Makes sense. She also introduced me to essential oils.
I know, I know…honestly, I kept getting bombarded with this stuff on my FaceBook feed and just thought, “Really? Really. How can all these essential oils help people?” Then I realized, Ummm…I’m rubbing olive oil from Israel on my daughter every night, so I might want to perk up my ears. I asked the chiropractor if anything could help heal her brain. Anytime I ask this question to anyone, the answer is that nothing can really repair the brain. There’s no medication, no therapy that can do it. Truly, it’s for God to repair and heal the damage, and Reagan has to make new connections to get those old skills back and learn new skills too.
Anyway, the chiropractor recommended sacred frankincense. It’s believed this is the particular kind of frankincense that the wise men brought to Jesus. It was worth more than gold back then, and today is known for it’s healing properties, including helping to cure cancer. So, we mix the sacred frankincense oil with the olive oil, and at her appointment earlier this week I purchased the brain power oil, so that’s been in the mix for a couple days…we rub it all together and put it on Reagan’s forehead, the back of her neck near her brain stem and on her feet. We started that two weeks ago. She crawled for the first time on Sunday, AND she’s sleeping a little later into the morning. There could be a correlation…I’m believing there is one. Between our prayers, the oil and God flat out touching Reagan, miracles are being performed.
God is working miracles every day b/c she is a living, breathing miracle. I’ve spoken to some incredibly smart people who have access to more medical and scientific articles than me. Based on science and what we know about the brain, Reagan should be doing nothing. Nothing. I need to remember this and be thankful.
Something very sweet and unexpected that’s been happening is Reagan likes to take naps with us. This past weekend, we visited some family and Reagan needed to nap, but we had the pak and play at the resort pool and it would be a bit cumbersome to pack it up and take it up stairs, just to unpack it, etc. So, I decided to take her up to the condo and try a nap on the bed. After almost an hour of fighting sleep, hitting me in the head and flopping around, she slept curled up to me for 45 minutes. It was glorious and an awesome time of bonding for me. I just love my little girl. Taking care of her is incredibly hard, but resting with her is incredibly rewarding.
snuggled up with mommy’s legsNapping with Daddy
The one thing we can’t get a handle on is the vomit. In the last week it’s happened four times, prior to that it was twice in a two week time span, prior to that, she was sick and vomiting every day or every other day for three weeks. So we went to the GI doctor on Wednesday and he really didn’t know what to say, other than, let’s do what’s called a “gastric emptying study.” What the heck is that? Well, radioactive dye will be put into Reagan’s formula so she can get it in her body. Also, the division of the hospital that does this is called “nuclear medicine”…comforting right? Reagan will have her feeding for ten minutes while they image her stomach at the same time to see what’s going on. Then, they will image continually for thirty minutes to see how the food moves (yes, our daughter with a movement disorder will have to stay somewhat still for about 40 minutes straight, it’s just funny to think about).
After all that, they will image in an hour, and then in two hours. In two hours, she should have almost all the food gone, or no more than 10% left in her tummy. That would mean she’s processing it properly. I think she’s processing it fine…I change her diapers, stuff moves down…our question is why is it coming up? The study will also be able to see any reflux. Reagan’s on medication for reflux…which is why no one can really make heads or tails of this. If after two hours, her stomach has not emptied most of her food, then she will be imaged in another two hours at the four hour mark.
It’s crazy to think that on April 8th, 2014, one major event has caused so much havoc on her little body. Rob and I were actually remembering that in the hospital she drank a bottle after her crisis…she ate baby food. It’s almost like the damage wasn’t finished. It’s weird.
Even still, there is a lot to be thankful for. Smiles, laughs, crawling and cruising. Of course Rob and I are concerned when she vomits. Life is sustained by food and we feel as if we’re skating the line of her metabolic disorder every day. She’s getting under the recommended caloric intake b/c she wasn’t able to handle the volume so it was concentrated further…when she vomits now, it’s scary for us. It throws me into a tail spin. We’ve slowed her feeding down, we’ve lowered the volume and started giving her only 4-5 oz. at a time over 30 minutes and doing that every few hours. It’s helped some, but she still vomits, and we just barely get all 28oz into her every day. Only God knows why this is happening. Truly. No matter the years of experience and education our doctors have, they do not have the answer. Just like they don’t have the answers for why Reagan is succeeding in many areas — the reason is God. So God, please be the reason again. Help Reagan’s body keep food down, and process it like you intended. Allow her body to work in the way you designed our bodies to work. We love you and thank you for your mighty healing power and love for our family.
I know a lot of you have been asking, “how’s this Instagram auction for Reagan going to work?” And…”How do I get Instagram?”
Let me help you out!
How to get Instagram and why you should have it: It’s so easy to get Instagram…you can sign up by downloading the Instagram app to your phone, or you can go Instagram.com and create an account. I believe you can even sign up via FaceBook. From there, it’s really very similar to FaceBook, except, you only upload pictures to Instagram. And…if you’re concerned about privacy, you can have a private account.
In order to participate in the auction, you NEED Instagram and the first person you NEED to follow is love_for_Reagan.
Auction Rules:
Auction will be Saturday noon- Sunday 8pm est.
$1 increase per item — this means in order to overbid, you must bid at least $1 higher than the highest offer
Bidders must comment with their paypal email address, and as a courtesy tag in their comment, the previous higher bidder on Instagram to notify them they have been outbid (example below).
All winners will be invoiced through PayPal Sunday night.
Invoices Must be paid within 24 hours.
Unpaid items will go to the next highest bidders.
Bidders must be 18 years of age and older.
Example: Say you want to purchase this awesome surf art print (unframed). The retail price is $20, but bidding starts at $10.
Instagram_user_1: I bid $10 and my email is Email123@email.com
Instagram_user_2: I bid $11 and am notifying @Instagram_user_1 they are being outbid. My email is Ijustoutbidyou@email.com
Instagram_user_3: I bid $12 and am notifying @Instagram_user_2 that you’re being outbid. My email is Iamwinningthis@email.com
You get the point.
The auction will only run from Saturday at noon to Sunday at 8 p.m. The items are so so cute and proceeds will go toward the cost of care for Reagan.
We seriously have AMAAAAZING friends who have put in so much time and energy into this auction and Rob and I continue to be blown away and humbled by all the vendors that have donated. We don’t know you guys, but you make some awesome stuff…I want to buy it all, but then that would defeat the purpose. Thank you all from the bottom of our hearts. And one day, Reagan will thank you too.
The LORD says, “I will give you back what you lost to the swarming locusts, the hopping locusts, the stripping locusts, and the cutting locusts. It was I who sent this great destroying army against you. – Joel 2:25
I am SO excited to write this update!
Tuesday, Rob and I drove to Jacksonville and back with Reagan for an appt. with a new Dr. to replace the one that retired from Nemours. We left at 9:30 a.m. and didn’t get back until 9 p.m. Suuuuuuuper long day, but so so good.
Almost the entire time in the car Rob and I listened to 90s music and guessed what year the song came out. I won, three games to ZERO…don’t challenge my Montell Jordan knowledge…I know how we do the 90s, baby.
We had no idea how Reagan would do in the car for two and a half hours, but she did awesome…she slept part of the way and then was in a stellar mood until we got to Jacksonville Beach for lunch. We ate at The Pier and the food was pretty great. If you know me, you know that I’m completely satisfied getting complimentary chips and salsa.
Rob and I have gotten pretty good at entertaining Reagan, while hooking her up to her G-tube, while eating, while making sure her hands don’t try to grab the G-tube, while having a conversation. Basically I sit at the very top right corner of my chair in pounce mode and Rob plays it cool and diffuses any stress that might be hanging out from my side of the table. I have no idea if people are noticing us, watching what we’re doing. I don’t know. We’re just doing what’s normal for our family. We laid all of Reagan’s medication syringes on the table, brought our own big mug to fill with hot water to warm her formula, I mean…it’s intense, that’s why I sit in the corner of my chair.
Do you notice the little backpack hanging on Reagan’s stroller? That’s her feeding bag and pump…Rob is doing the ultimate distraction, giving Reagan water in a straw. We’re probably talking too.
Anyway, lunch was awesome, >> and afterward << (My italics are for a small group of people and our little inside joke) we walked the pier.
Hey Mom, I think Dad’s taking a picture…we should look at the camera.Yay! We’re all looking at the camera!
After our little outing, it was down to business in downtown Jacksonville. We figured out where we needed to be and got to the office just in time for our appt. When we got called back, there were two people taking information and learning all about Reagan’s history. Rob and I happily told Reagan’s story. We talked about her milestones before her crisis, and her milestones after her crisis. The physical therapist was impressed. “Normally, standing and cruising are nine and ten month milestones. The fact that she’s re-gained those skills in just four months is incredible.”
Yeah. It IS incredible. And I just became so overwhelmingly grateful that God was, is and continues to answer prayers. I am so thankful that he is repairing what the locusts took away from Reagan. I am so thankful for everyone who prayed mighty, mighty prayers when Rob and I were in our darkest moments of despair. I am so thankful for Reagan’s little buddies praying for her. I am so thankful to be Reagan’s mom and I am so thankful to be married to Rob and that he is her dad.
Tuesday was a long day…but I feel like our family bond was strengthened. It’s an awesome feeling to feel, KNOW and see our family bond continue to be cultivated. It’s super rewarding to be a parent to Reagan and to watch her smile and laugh. I am constantly amazed at how she just goes with the flow of the day. She fussed two times, for maybe seven to ten seconds ALL day. She sat in a car seat or stroller almost ALL day and was happy as a clam. I am so thankful to have a daughter like her.
While in the Dr. office, we spoke with a social worker who seemed amazed at our 72 therapies/discipline allotment and told us that some cerebral palsy patients have 60 therapies that have to be used within two months and then they’re done for the year. Seriously?! That seems so inadequate. I honestly believe that God hand picked a guardian angel to help Reagan within the walls of Humana. How else can this be explained? And I am so grateful, so thankful. God is able to do anything. Anything is possible with Him. And I believe that Reagan will walk and Reagan will be a walking, talking miracle. I am so thankful to serve a mighty God…a God who dishes grace, mercy and love onto us every day.
Today was such a good day. The staff said they see miracles all the time…well, it’s time to see another, her name is Reagan.
I don’t feel like writing…I just want to go get an iced coffee, a pair of sunglasses and pick up a few things at Publix. But today, the prompting to write something has been so strong in my head. Reagan is with Rob at therapy, I was about to walk out the door…I even kissed Bauer and told him to be a good boy, and then looked at my computer and the prompting in my head was even louder, “WRITE!” Sigh…fine.
Let’s see, we are about four months outside of Reagan’s metabolic crisis. I will never forget April 8, 2014. The other day, I was going through my purse and I found the hospital bracelet. We have quite a few of them, but this was the one that had the date of a complete and drastic change. A date can hold so much meaning. A birthday, a wedding, the death of a loved one…and April 8 is one of those days.
My friend recently sent me an email with specific things she felt like God did through our lives that prepared us for this. But at the end of her email, there were some notes that she’d forgotten to erase as she had written her email that week. And it had a link from a blog post in April and a video of Reagan trying to lift her head, which she could not do.
That video is painful to watch, but it’s also awe inspiring. How far she’s come from that is incredible, and can only be attributed to God’s hand on her. The below video is what Rob captured in therapy today. In four months she went from unable to do much of anything, to walking with a walker for the first time today.
I’ve been holding on to this story and these thoughts and connections for a while and I don’t know why. About a month ago, friends of ours visited us from TN. She told me a story about her daughter throwing up randomly and how a co-worker said she felt like they needed to anoint her with oil b/c they thought it was a spiritual attack. So, they anointed their daughter with oil and the vomit spells stopped.
That story sparked a thought that maybe we should anoint Reagan with oil. So we started to, with the regular ‘ol Pompeian extra virgin olive oil. Nothing fancy, it’s in a plastic bottle. But we started doing it every night. Praying for everything that was lost to be restored. Maybe you think it’s crazy that we put oil on Reagan’s head and pray for her brain to be healed, and on her neck for her throat to be able to swallow food again, and on her arms and wrists so they will gain tone, strength and fine motor skills, and on her stomach for her insides to heal, and on her legs and feet so that they will walk…I don’t really care if you find that manner of prayer crazy, it’s what we do.
One time I was on a walk with Reagan, and I heard a clear voice telling me to “Run and anoint.”Seriously God?! You want me to run home from here? It’s far, I don’t run, I can’t run that far. “I will sustain you.”
So that’s what I did. I checked how far it was after I got home…3/4 of a mile and I didn’t stop (if you know me, you know that’s a miracle in and of itself). I haven’t done that in probably 10 years. But I ran home and anointed Reagan with oil. Was she instantly and miraculously healed that moment? No. But I think it was more about obedience. I just needed to do it. And I feel like that’s why we anoint Reagan, not to mention, it’s Biblical and we pray that God will put healing properties into the oil we put on her.
A friend of mine recently went to Israel. “Oh boy!” I thought, “the motherland!!” I asked him to bring back some oil, and to bring the good stuff, the strong Jesus juice…don’t hold out! He brought oil back from the region that Jesus performed 75% of his miracles in. I love smelling that on Reagan’s head at night. We put it on her before bed when we pray, and I can smell it on her forehead when we feed her at 10:30 p.m. and I can smell it in the morning when I pick her up and kiss her forehead. It’s a constant reminder that we are covering her in prayer, and that Jesus has a purpose for her life. I don’t understand what it is or why we have to go through these hard times. But something that does provide comfort is that God knew her life would be abundant with us. We would not leave her or forsake her.
God sees each of us much differently than we see ourselves; “Man looks at the outward appearance, but the Lord looks at the heart” (1 Samuel 16:7). Not only does God see deeper, He sees with an expanded spiritual spectrum which we can scarcely imagine. {excerpt from my devotional today}
If God looks at the heart…that means he looked at my heart and Rob’s heart and he knew that there was something in our hearts (that we didn’t even know about) which would allow us to care for Reagan, tell her story and direct the spotlight where God wants it. That’s encouraging…
On June 19th, I asked my friends to tell me how their kids are praying for Reagan. Jesus told his disciples to have faith like a child. And I’ve often thought, “What if our prayers are just not the right kind of prayers? Maybe, we need the prayers of children to heal Reagan.” Children are held in such high regard by God, they are not to be shushed and pushed to the side…they believe, they have faith and they have not been tainted by the pains of this world yet. Here are some of my friend’s kids, and their prayers for Reagan…
Emery (and sometimes Reese – depending on the nap she got that day) pray for Reagan every single night. “Dear Jesus I thank you for baby Reagan. I thank you that you can heal her and take all of her spots away and that her body would feel all better.”Wyatt–“dear God, help baby Reagan feel better and not get sick anymore” Miles–“aaaamen!”“When I say prayers with Everett before bedtime, I ask him if he wants to pray for Reagan. His response is almost always, “Eat.” I say, “You wanna pray that Reagan eats good?” He says “yes.” I start to pray: “Dear God, we thank you for Reagan…” And Everett says: “Eat.” He’ll keep interrupting me until I pray that Reagan eats good and her feeding tube works right and she gets the nourishment she needs. Then he’ll let me continue with other prayers. It’s important to my boy that your girl eats well, so we’ll keep praying.”Cody: “Dear Jesus…please be wid baby Reagan. Make her bedder. Aaaaaaaaaamen!” (He gets a little excited about the amen!)Ev prayed tonight that God’s hand would be on Reagan, that she would feel better soon, and that He would “keep her safe and sound for when she is healed.”
I love all these kid’s prayers. And I love Ev’s prayer…for God to keep Reagan safe and sound WHEN she is healed…not IF, but WHEN! I want to pray like her. And I pray that these kids will see God move in HUGE ways for their friend Reagan.
Since the Dear Humana post, and email to their corporate relations blog post, I was contacted swiftly by Humana. First by customer service, and then by their social care department since I posted to social media.
In our minds, Rob and I had decided to stand still (especially after those waves) and allow God to fight for us.
But Moses told the people, “Don’t be afraid. Just stand still and watch the Lord rescue you today. The Egyptians you see today will never be seen again. The Lord himself will fight for you. Just stay calm. -Exodus 14:13-15
Jessica in the escalated customer service department knocked it out of the park. She contacted me Thursday late afternoon and said she was pulling every call, every note, speaking to every person at Humana who ever touched the file as well as to our providers, she also indicated that Humana was holding conference calls in regard to our case and that it was a top priority. Before we got off the phone on Thursday, she let me know she had compiled most the evidence and was still going through it, but that I’d likely have an answer on Friday. I assume that she needed to comb through a somewhat sizable mound of stuff before arriving at an answer. I tried to remain confident in the outcome b/c I had evidence on my end, but I didn’t know what Humana would have.
On Friday, around 2 p.m. we had our answer. Humana could not find the call btw Dr. Ried and the originator of the authorization code, but they could see notes in their system that a call did happen on May 22, and there was overwhelming documentation in the notes of Humana’s authorization department that did confirm 288 total services (72 per discipline!) btw physical therapy, occupational therapy, speech therapy and feeding. Humana is honoring what they originally told us and our two providers on May 22 and May 28, as well as sending a letter to that effect, and agreeing to the 288 therapies until the end of the year!!
Thank you so much to everyone who shared our story and who told Humana to pay attention! Rob and I are so grateful for the massive army of Reagan warriors we have.
I don’t know what happens in other situations that may be similar to ours, I just felt like this had to be redeemed. We had to push, and you guys helped Humana notice. Always push for what is right and never, ever, ever give up!
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