Mighty Elouise

It’s been awhile since I’ve updated this page, it’s been a whirlwind of a few months, though!

Elouise was accepted into a clinical trial (that’s not something I ever thought I’d say) to wean her off the Gtube. We are in “phase 2” of this trial currently. She started a trial drug (or placebo, hello double blind study) that she will take for 4 weeks to increase her appetite. She’ll slowly wean from the medication over the 4 weeks.

On Sunday, we started the tube wean, which will take 10 days. After 10 days, she will no longer be receiving nutrition from her Gtube (lots of hydration, though!).

Throughout this period, we will closely monitor her weight in conjunction with what feels like a million doctors (it’s 4, but same thing). If she loses a certain amount of weight, we go back. I think the true test of all of this will be once she’s weaned from the drug that makes her hungry, but who am I to say?

It’s been a crazy few months with the trial, among several other very Elouise type things! She’s always keeping us on our toes.

This girl is starting to feel like herself again! Nights are still harder but she’s getting her energy back and is much less irritable.

We’re not quite in the clear yet, the scabs falling off can cause quite a bit of pain and discomfort so we are watching out for that.

Thank you so much for your continued prayer!

6 days post op and girl is still feeling ROUGH. Her pain is hard to control with Tylenol and Ibuprofen and sleep is a struggle despite her wanting to pass the heck out.

We know we’ll be on the other side of this soon, but it’s definitely hard to see her in so much pain.

After a super rough night, alllll the pain meds, and a spiked fever of 102 this morning, we are HOME! She was able to wean off the narcotics and do well with just Tylenol and ibuprofen so they let us out 😍 she was so happy to be home and immediately more comfortable.

Thank you for your continued prayers. The hard part is getting her healed and keeping the pain to a minimum.

Tonsil and adenoid removal ☑️

Elouise did great with her surgery and it everything went well! She had some trouble tolerating pain even with Tylenol and ibuprofen, so luckily our doctor recognized it as soon as he saw and and we have some kickass nurses her got her the pain meds she needed!

She was ready for bed and is passed out now so hopefully it lasts! 🤞🏼🤞🏼🤞🏼

We made it home at about midnight last night. She vomited up her first feed again this morning and after that our GI called and had us do clear liquids only today (pedialyte!) and a clean out a ton of miralax. We will up her regular meds to help out long term, too. She hasn’t vomited at all since starting clear liquids, so the real test will be tomorrow morning when we trial a feed! She’s happy as can be as long as her belly doesn’t hurt, and as long as we don’t do regular feeds she’s not in any pain.

Prayers she keeps it down and we’re smooth sailing from here!

We’re just about 5 days from surgery, so in true Elouise fashion we’re in the ER tonight. She’s having what’s assumed is a bad gastroparesis/constipation flare up with a lot of vomiting. Poor girl had an e***a and is getting IV fluids before we go home for the night.

I’ve had a few people ask if we regret going to Cincy since it wasn’t everything we hoped for.

We 100% do not regret our choice to go. While we didn’t get definitive answers, we got ideas that hadn’t been thrown out before.

We know that in all likelihood, there probably is a neurological component. That’s something we couldn’t get out of our neurologist at Childrens Mercy here at home.

We have a plan from rheum if getting her tonsils and adenoids out doesn’t help the fever. But, we also know that if the fevers ARE neurological, tonsils won’t help it.

So, while we didn’t get everything we’d hoped for, we got something. We know Elouise is rare, that she continues to puzzle everyone, and that she can sure capture the hearts of everyone around her.

Fevers hit this girl HARD today. We’ll never stop trying to figure this out. We’ve got 2.5 weeks until those ginormous, nasty tonsils come out, and we keep our fingers crossed they bring some relief.

Our trip wasn’t everything we’d hoped for, but it also wasn’t completely useless.

GI had no other suggestions
Rheum wanted to see what removing the tonsils did, but has a plan for if it doesn’t.
Neurology had a few ideas - one being autonomic dysfunction. She fits some of the criteria for that, but it’s not easily diagnosed until kids are older. So, it’s on the table. She also wants to rule out a mitochondrial disorder with a stomach biopsy. I’ve emailed our genetics team and GI team here to see their thoughts on this. She has T&A surgery in 3.5 weeks, so ideally we’d do it then while she’s already under.

Again, not what we’d hoped for, but at least from neurology, she heard our concerns, saw the WHOLE picture, and agrees that in all likelyhood, something larger is causing the majority of what’s going on.

We’ve made it to Cincy! We’re checked in and settled at Ronald McDonald House, which, is nothing short of amazing.

Elouise has enjoyed all the new and fun toys and roaming the halls. This mama and Elouise are both homesick already. Bedtime has been rough, to say the least. We miss our bruddy (Zachary) and daddy.

Tomorrow we see GI and Rheumatology. Fingers crossed we get some sort of encouraging feedback from them. My heart is weary and worried we’ll be here for nothing.

Thank you all for your continued love and prayers. ♥️♥️♥️

KCI ✈️ CVG

Here we come Cincy!

This time next week we’ll be checked in (and hopefully sleeping) in Cincy at the RMH!

I’m up rocking sweet Elouise right now as she’s super achy and not feeling great after almost a week solid of fevers. We should be on the other end of it soon, but it sure does suck. Here’s to hoping for answers soon!

We’re also 5 weeks out from her adenotonsillectomy!

Thanks for keeping our girl in your prayers. It means so much. ♥️♥️

It’s ! While Elouise is pretty much undiagnosed, we know she has , which is what causes her belly trouble and need for a Gtube! Gastroparesis is rare, especially in kids Elouise’s age. She was diagnosed at 2 months old. She received her first feeding tube, an NG tube, at 5 weeks old.

We know that is likely we receive a diagnosis from neurology at Cincinnati, and we are hopeful to receive one from Rheumatology! We also know that those diagnoses will probably add to our rare list, and that it’s unlikely to bring a cure, but, answers, none the less.

We are now two short weeks out from Cincinnati!

I’m really looking forward to staying at RMH now, I’ve heard so many great things about it and am excited to talk to other medical families!

Other than packing, I think we’re ready. She’s got a new car seat to gate check, everything’s booked, I have her medical card for TSA ready. Mentally preparing to take her through TSA with all the medical supplies and liquids is my only obstacle.

Shoutyourstory.org/Elouise

We are just about 3 weeks (🫣😬) away from our trip to Cincy!

Flight is booked ☑️
Rental car booked ☑️
Hotel Cancelled ?! ☑️

We ended up being able to get a room at Ronald McDonald House across the street from the hospital! I’m excited and nervous about the unknown of this plus the unknown of everything else. It helps our cost, though!

I’ve had several questions about our “shout your story” page, the biggest being if you can make a donation just to us, without buying a shirt or item from the page. Unfortunately, you cannot, but their merch is really amazing and 50% of shirts comes back to us! It’s a smaller percentage for other items.

Shoutyourstory.org/Elouise

Happy Feeding Tube Awareness Week!

There are around half a million people in the US who rely on eternal feeding (use a feeding tube) for proper nutrition.

Some, like Elouise, can still eat and drink by mouth, but it’s not enough to grow and/or thrive. Others are NPO and can take nothing by mouth. It all depends on why they have a feeding tube and the severity of the condition.

There are several different types of tubes, but they’re either nasal tubes or abdominal tubes. Elouise started with an NG (nasogastric) that went through her nose into her belly. We thought the need for it would be short term, after a few months we realized it wouldn’t be, and decided a Gtube (gastrostomy tube) would be better for quality of life. That’s what she has now! It goes straight through her abdominal wall into her stomach.

It’s not always sunshine and rainbows.

It looks a lot prettier on the gram than in real life.

Being a caregiver is not the same as parenting.

Sometimes, it looks like this. Crying and fussing from being achy, waiting for the meds to kick in and the fever to subside.

It’s 10 syringes (or more) per day to keep her functioning and happy.

It’s countless phone calls, emails, and voicemails to doctors and therapists. Wondering if insurance will accept this, that, and all the in betweens.

It’s things you do every day that you never imagined you’d ever do, especially for your child.

Questioning if you’re doing the right thing or are on the right path, is it too much, not enough? Constant worry and grief for what should have been. Wondering what the future will look like?

Please don’t mistake this as complaining, I’d do this over and over again for my sweet girl. But do I wish it were different? Yea. Do I wish she never had to go through the 100s of appointments, tests, and pokes? Absolutely.

So, before you say things like, “I wish it was that easy to feed my kid,” or “it’s normal for toddlers to not eat!” Think about the road we’ve been down, the mountains we’re climbing, and how we aren’t even close to the finish line.

April 12 is our surgery date for Elouise’s adenoid and tonsil removal.

91 days away, feels like forever. We’re on the cancellation list in hopes that we can get in sooner, but my hopes aren’t high for that.

We know we’ll at least be inpatient for 24 hours afterwards, if not longer. They consider A&T removal a pretty major surgery because of her age, so they want to monitor. I hate hospital stays, but I’m not upset that we’re staying, it brings a lot of piece of mind after a big surgery.

This will be her SIXTH time under anesthesia. It never gets easier to send her back, but I know this will be best for her in the long run.

In the meantime, we continue to plan our March visit to Cincy and are working on scheduling her visit with aerodigestive!

Our flight to Cincinnati is booked! We leave March 12th and return the 14th. We’re starting with Rheumatology, Neurology, & Gastroenterology. A return trip is incredibly likely to see aerodigestive.

https://shoutyourstory.org/elouise

We checked off 4 specialist visits, an MRI, and some therapy sessions last week.

The good news: Elouise passed her ABR and does NOT have hearing loss! This doesn’t mean it couldn’t still happen, she’ll be followed closely for awhile, but we’re taking wins where we can!

Elouise will need an adenotonsillectomy (adenoid and tonsil removal) because a.) they’re HUGE. b.) she’s a mouth breather and possibly has sleep apnea, and c.) they think they are probably causing her fevers. We’re hoping to get a call this week to schedule this within the next few months.

Finally, Elouise’s MRI results came back. The results were what we expected, but still difficult. She has some white spots/“bubbles” on her brain as well as some enlarged ventricles and some other things that are above me. It’s what both our neurologists call “interesting” and will be discussed at a conference sometime this week. Both her CMH and OP neurologist are happy we’re going to Cincinnati, given that they’re #1 in the country for neurology and “interesting” means about the same as “this is new for us.” No one’s willing to give a diagnosis yet, but threw around “it’s similar to this, this, or this.”

Considering our CMH neurologist had brushed us off thus far, I’m happy they’re finally listening, even if it took this. Again, we’ll take good news where we can.

So, last week was intense, crazy, and a little overwhelming, but, here we are, with more information than we’ve ever had before. We’re grateful for it, and happy the pushing and advocating is maybe starting to pay off.

We kicked off winter break with 2 of Elouise’s 8 appointments this week!

She has an MRI and ABR (auditory brain response) Wednesday morning. This is to see how her brain has developed over the last year and to check her hearing in her left ear. She has to be sedated for this. Prayers for a great anesthetists and great results! ♥️♥️

Miscommunication has made for a longer than expected timeframe in scheduling our trip to Cincinnati, as well as a little bit of heartbreak.

We were originally told we were being moved to aerodigestive, which was exciting and hopeful. But, when we went to schedule that, it was only for GI and feeding team. After reaching out, the nurse who called us had misspoke.

Seeing JUST GI in the aerodigestive would would push us out to May, when we could see a regular GI in March. I made it clear that we either see all of aerodigestive or we stick with the regular GI doctor.

After a LOT of back and forth (seriously, I could have whiplash from the phone calls and the decision changes), they decided to refer us to the whole Aero Team. Now, we wait for that phone call.

To make sure we didn’t lose our chance in March if this all doesn’t play out how we’d like, I scheduled GI, Neurology, and Rheumatology appointments for March 13th and 14th. Those will be cancelled and rescheduled if all goes through with the aerodigestive team.

I cannot express how grateful we are for everyone’s support and your donations to help us with travel.

Thank you so much for “shouting” your love for her. Go Shout Love

Happy. Tears.

Y’all, we have never really felt listened to at Children’s Mercy. I’ve fought for it, had meetings about it, talked to patient advocacy about it. Nothing.

We haven’t even been to Cincinnati yet and we are already (and finally) feeling like we are heard. We were originally just referred for our 3 heavy hitter specialities - GI, neurology, and rheumatology. I got a call today from GI saying they thought she’d be better served in their Aerodigestive department. This. Is. Huge. This department is made up of ENT, Pulmonology, Gastroenterology, Surgery, Nutrition, and Speech Pathology. These are all things we desperately need help with, but they were smaller rocks than the others. They saw that when looking at her history and are acting. I am so excited.

We haven’t scheduled yet, as we continue to lay the foundation to make it a worthwhile visit up there; but that should be soon! Im hoping and planning for spring break to not have to take off work to reduce some of the stress of such a huge trip.

You can purchase ANYTHING from our site and a portion (about 50% for shirts, 25% for sweatshirts, and 10% for books!) will come directly back to us to help us get there!

https://shoutyourstory.org/elouise/

Please feel free to share this link with anyone and everyone, as well as our page!

Meeting and talking to others who are on journeys similar has been the best, it’s so nice to talk to others who “get it.”

Elouise – Shout Your Story Meet Elouise Elouise is a goofy, sweet girl with a BIG personality. She loves her brother (and mama and daddy) and all things lovey or baby doll involved. She’s a social butterfly and loves to get a laugh out of anyone around. Our medical journey with Elouise started around 3 weeks old, when she n...

Neurology, Gastroenterology, Rheumatology, ENT, Ophthalmology, Genetics, Audiology. Those are the specialties we see at Children’s Mercy right now. With no clear answer or idea of what could possibly be causing all of Elouise’s symptoms. We hear “well, she looks good” and “she’s a puzzle” a lot. We’ve heard “it could be worse,” a lot. I’ve started to feel like she’s not “sick enough” for them to take interest in her. So we persistently advocate and make sure our voices are heard because living in pain is not an option. Individually, (most) of Elouise’s doctors are phenomenal. Team work, however, is not in their vocabulary. So, we fight like mad to get her the help she needs. Luckily, we have a pediatrician who stands by our side and fights with us.

We feel our best option for Elouise right now is to travel to Cincinnati Children’s for a second opinion. We’ve heard phenomenal things about them working with each other to find a diagnosis, to see the whole picture. Currently it’s looking like we’ll go over spring break, although nothing is set in stone right now as we work with the hospitals coordinators to get all of our appointments aligned so we don’t have to travel more than once. The hope is they’ll essentially become our care coordinators, and Mercy will just follow their plan.

Asking for help isn’t my strong suit, this is a hard one. But, traveling to Cincinnati won’t be cheap. If you can, or would like to, you can use this link to purchase amazing gear from GoShoutLove, they’re a KC based non-profit who does amazing work for amazing kids on rare journeys. Any purchase made through this link will benefit Elouise and a portion of the purchase comes back to us to be used toward our trip. If anything, it’s an excuse to buy really comfortable clothes for a great cause 😉

https://shoutyourstory.org/elouise/

Please feel free to share this link and this page!

Elouise – Shout Your Story Meet Elouise Elouise is a goofy, sweet girl with a BIG personality. She loves her brother (and mama and daddy) and all things lovey or baby doll involved. She’s a social butterfly and loves to get a laugh out of anyone around. Our medical journey with Elouise started around 3 weeks old, when she n...