Real, Raw, Happy, Sad

Alright, well, we were not expecting a hospital admission. Not going to lie, we feel like we jinxed ourselves.

The last few months, when people are asking how we have been, or how we are doing, Joe and I were hesitant to say “good” or “ok” because a) we’re just not use to it and b) we’re honestly scared of jinxing ourselves! We are NOT used to calm…as clearly, the last 2 years have been anything but. But the girls were good, we were all good! We had a few worries with Lillian and some ENT issues, but that has temporarily been put on the backburner and all was well.

Quinn spiked a fever late Monday morning, and just seemed out of it. With the girl’s kidney condition, they generally cannot take Motrin, and this time, Tylenol just wasn’t cutting it. We brought her to her pediatrician, and she was negative for flu and covid, which was great, but our gut just said something was happening. For those that know Quinn, she is ALWAYS happy. Monday night and Tuesday morning, she didn’t want to be looked at, touched, played with… she wanted nothing to do with anyone. We couldn’t console her, she wouldn’t eat, she wouldn’t drink, and then she started puking and was unable to keep her medications down, including her hypertensives. It was time for the ER.

Joe and Quinn spent hours in the ER Tuesday, and honestly, everyone was leaning towards viral. The last thing they were checking was her urine. Sure enough- all signs pointed to a UTI. Helloooooo hospital admission number 7.

Slowly, seems like very slowly, but surely, our girl’s spunk is peaking through. She was in fact positive for a UTI, but the ultrasound did not show that the infection had reached her kidneys, and her heart is looking beautiful. Right now, it is a matter of battling these fevers, getting her fluid intake back to normal, and fighting this infection, all of which are doable.

So, why am I writing? Honestly, my heart is heavy and it’s an amazing outlet for me, so why not.

Maybe it’s the “slowness” of this hospital stay- we have answers, we have a gameplan, everything will be ok… but this one hurts. They all hurt, don’t get me wrong. But it’s almost one of those we were on cloud 9 type feelings and then our legs got pulled out from under us like Kidney Disease was saying heeeeey, remember me! I keep telling Joe, we should be used to this, I should be used to this. And to a degree, I am. I know that during the week, it’s best to go straight to level 5 or 6 for parking. I know the best times to go to Starbucks. I can walk the halls in my sleep, and there are faaaar too many hospital staff members that know us. In those aspects, I am used to it.

My heart will never be used to this. It has been nearly 10 years since I first learned of ARPKD, 10 years of being a kidney mom. That is a long time! I am constantly asked if I am in the medical field… no, I’m a mom to medical miracles. With that badge, comes trauma.

Here’s the real and the raw. I have been told “you don’t have trauma, that’s for soldiers,” or “get over it” or “move on.” Okay, well, if it were that easy, trust me, it would be done. From my pregnancy and Lillian’s diagnosis, to NICU, to every hospital admission, to transplant, to warrior number 2, to heart failure, to watching my child almost die not once, not twice, but 5 times… I am relatively certain that one will never “get over” that. Now, that’s not to say I am not stronger than I was 10 years ago, or 16 months ago, or 3 days ago. And let me remind you, this is a family affair. We ALL have trauma; we go through this life TOGETHER.

But in our moments of chaos when you ask me “how are you doing” and I respond with “I’m okay” or “hanging in there”… inside I am probably holding my breath. Inside, I am using coping skills, focusing on the facts and the positives, and reminding myself of my family’s strength. And, when chaos hits our lives, for example Quinn is back in the hospital, it’s a team effort. It’s deep breathing with Lillian, its holding hands tightly when emotions hit, its picking up slack in one area while the other person levels it out in the next-it is all in.

We have our routine, and it works for us. With Lillian, Joe and I both always stayed at the hospital 24-7. I remember her doctors literally forcing us out of the room at one point to simply take a walk in the hospital because we hadn’t left her room in days. With Quinn, again, real honesty here, Joe takes the night shift and generally doesn’t leave the hospital. Since watching so many of her cardiac events, my heart just can’t handle it and I literally do not sleep if I stay. And Joe, in addition to never having seen her cardiac events, has that lovely man superpower of being able to sleep anywhere and through anything, so it actually works out okay. It is exhausting though, for both of us. For me, my goal is maintaining normal as much as a humanly can for Lillian-getting her ready for school, dropping her off, heading straight to the hospital, staying for doctor’s rounds, leaving for pick up, carline, homework, dinner/dance/Catholic PREP… depending on the day and extracurricular, back up to the hospital, back home and bedtime. My head spins a thousand miles an hour, and yet when it hits the pillow, it slows down and plays on repeat sometimes.

Please do not take this as a rant or a post of being ungrateful. I am beyond grateful to be the mother to Quinn and Lillian, and I feel like God knew exactly what He was doing to have Joe and I in this journey together. I just want it known, for the sake of other medically complexed mama’s and daddy’s out there, that it is simply okay to not be okay all of the time. We put a smile on our face day in and day out, and we wouldn’t have it any other way. We hold back tears, we stand firm, we fight, we advocate, we support- but we also hurt, and cry, we bruise and get beaten time after time. We get scared of comfortable, we put guards up, we avoid triggers, we know pain and we have countless battle scars.

We are exhausted, we are running on fumes and most likely 7 shots of espresso reheated one too many times. And guess what, tomorrow, for the immense love and pride we have in our children that fight harder than anyone, we will do it again, with that same smile.

It is okay to hurt. It is okay to have trauma. It is okay to not be okay. As Joe said, if this felt normal then we would have a problem. So tonight, as my 9 year old kicks me in her sleep, I will replay the day, but I will also tell myself it is okay, we are all, okay.

Silly faces at bedtime FaceTime

Always on our toes…

Man, I know I promised to do better on this page, I am so sorry! I update the girl’s Facebook page regularly, but I WILL do better here… now that I have figured it out a little more!

So much has happened in the last 9 months… but what’s new, that’s our life. There is always something keeping us on our toes!

Lillian started heavy steroids for rejection around the time of my last post and would spend 5-6 miserable months on them. I have very mixed emotions about this medication. I thank God that it has the ability to pull her out of rejection, but it’s a monster for what it did to my little girl. Lillian swelled up like a balloon, physically in pain from her skin stretching. Her back, neck, shoulders and face hurt. She gained weight and felt uncontrollable emotions that a kid her age doesn’t even know how to process. She didn’t sleep well, she hated how she looked, and she was scared of the rejection happening in her little body. Looking back now, when a picture comes up from those months, she asks us to delete it. It was such a painful time for us all, but especially Lillian.

In December, Quinn was admitted to the CVICU again due to a severe intestinal infection of some sort. We never got true answers as to what was happening and had some really scary times with her platelets dropping drastically, but our girl’s heart proved it was getting stronger and stronger and she was able to come home just before Christmas. Having both of my girls home for Christmas was a dream come true!!

We had a few “slow” months… Our slow months included weekly labs and therapies for Quinn…routine labs for Lillian…and again, always being on our toes. We celebrated Lillian’s 1 year transplant anniversary in May with a trip to Animal Kingdom. Quinn spent the day with her fave CVICU nurse, while Mom, Dad and Lil put on some miles do any and everything Lillian wanted to at the park. Of course, we ended the drive home with Chick Fil A.

Later that week, things got very scary. Lillian woke up that Friday not feeling well. In true mom fashion, I thought she was just being dramatic about getting out of bed…boy was a wrong. I felt her body and instantly knew things were not ok. Lillian tested positive for covid, something we worked SO dang hard to avoid and fight. She was hit and hit HARD. I remember driving to Gainesville, telling myself to keep talking to her so I knew she was conscious. Her fever was high, she was vomiting, shaking and her O2 was low. There were numerous times I told her, “That’s it, I am pulling over and calling 911.” She promised me she was okay, and asked I just drive…. She was seen instantly and was able to start IV treatment within hours of testing positive. It was insane how quickly she bounced back with 4 days of IV therapy. Quinn was also admitted with COVID that same weekend…but in Jacksonville. Talk about your heart feeling torn…Joe was with Quinn, and I was with Lillian, in different cities, different hospitals. It was awful.

A few weeks later, we celebrated BIG for Quinn’s first birthday. But, just days after her big celebration, we called 911 for rescue after Quinn was experiencing some sort of respiratory distress. She was, again, admitted to CVICU for roughly 2 weeks with some sort of virus. Her heart stayed strong, but it brought back a lot of fears and emotions seeing her struggle. Watching her chest retract, pulling so hard for a single breath, is so scary to see. She fights hard though, and with a smile…most of the time, unless they tell her she can’t eat…then she is PISSED. Due to some funky labs and some of her symptoms we would see during her stay, we did an Upper Endoscopy outpatient a few weeks later, as her doctors were suspicious that there could be a GI bleed that caused some of these things. Luckily, there was no evidence and things would very slowly return to normal for Quinn.

Lillian’s numbers have finally returned to a safer range, and the virus within her kidney wreaking havoc for months was evicted. We are finally seeing her sweet little face return to normal after nearly a year!! She is back on her original regimen of anti-rejections and feeling good. Can you believe our baby is in 4th grade?! Time can be a thief!

I get scared to say this, let alone type this, but both girls are doing okay right now. This is almost more nerve wrecking for Joe and I, were so use to the constant chaos! Quinn continues to thrive and try to close her delay gap with weekly therapies. We now get to go 3-4 weeks between labs for Quinn, and 3 months between labs for Lillian. Lillian is adjusting to 4th grade and added homework, along with a new dance team! Quinn still thinks Lillian is the best person in the world, and Lillian still worries BIG about her baby sister, but their bond is the most beautiful thing in the world. They love each other fiercely.

We’re starting to gear up for our 6th Annual Hope for Lillian Grace Reindeer Run… can you believe it! So much goes into this event and it is SO special to our family! We hope to see you there! I promise I will try to update here more! Please be sure to join our Facebook page though too, as I have made it private to protect the girls the best I can!

Thank you <3

A lot to catch up on…

Well, clearly I have neglected this site a little too much… if I am being honest, it totally confuses me! I am not the most tech savvy person out there. I am going to do my best to sum up our chaos from the last 3 years…

Realistically, in terms of our ARPKD journey, things were stable until January 2021. Lillian maintained 25% kidney function for 3 years. There were constant med changes, but she/we managed. And, she did well. January 2021, things quickly went downhill. Let me back up by saying Lillian’s beloved nephrologist retired in September 2020, and things were a complete mess when he left. We returned from Michigan in January after being gone for a month, and Lillian’s labs were all over the place. Her phosphorus had gotten extremely high, her potassium was high, and her creatine was the highest we had ever seen it. We assumed it was a fluke, just bad labs after being sick…

It wasn’t a fluke. In fact, it was the start of Lillian’s rapid decline. Oh, I forgot to mention, we had just announced we were pregnant with baby girl #2! From January to April, Lillian continued to decline, going from 25% function to 18% in April. April 28th, we agreed with Lillian’s transplant team to activate her on the DR registration. This was a donor registration with higher qualifications, meaning a more specific match. We did labs the following Monday, May 3, first thing in the morning. By 1:00pm the next day, Lillian was listed on the regional donor registration. She had dropped to 16% function, and we didn’t have the luxury of being picky anymore.

7 days later…almost down to the very minute, we were in Gainesville for surgery prep. Those 24 hours, from receiving the call that they may have found a match, to driving to Gainesville, to waiting for surgery time… at the time, seemed to move at turtles pace, but now looking back, its almost a blur because of how intensely fast things happened. Lillian underwent a 6 hour surgery at 11pm on May 11 to remove her right kidney and receive a new donor kidney.

I was 32 weeks pregnant, miserable, and terrified. Lillian was asleep when they wheeled her down for surgery prep. They told us we would have some time before they took her back… okay well that time was seconds, because they administered meds right there in the hall, had us sign consents, and took her. She started to wake up and panic, as I did everything in my power to keep my composure, but I couldn’t. Tears rolled down my face as I handed my baby over to a team I barely knew, a surgeon I met just 8 hours ago, entrusting them with her life for the next 6 hours. I paced that room, judged and critiqued every painting in those halls, stared at the patient screens, and paced some more. I sobbed in that small waiting room, terrified, repeating over and over “Please God protect my baby.”

Lillian’s right kidney that was removed was over 16cm… the full grown healthy adult kidney she received was 10cm. Seeing images of my daughter’s kidney broke me. I can search all day and see other peoples cystic kidneys, but seeing the monster that was inside my baby hurt. You feel helpless. Her surgery was/has been an amazing success. She spent 7 days in the hospital, of course stealing hearts and amazing every doctor that met her. She pushed herself and conquered every obstacle in front of her. She pushed through pain like nothing I have ever seen before, even refusing to take anything for pain, not even Tylenol. The next several weeks were spent going back and forth to Gainesville numerous times each week for labs and clinics.

4 weeks after Lillian’s surgery, I went in for a regular high risk check for baby girl ball (Quinn). I was 36 weeks pregnant with my c-section scheduled for that Friday, when I would be 37 weeks. I was by myself as we expected this to be a quick appointment for a “routine” amniotic fluid check. My appointment was at 3:00… well, in true Ball fashion, things weren’t okay and quickly changed.

I was sent downtown for monitoring, as they were not finding any amniotic fluid. Joe met me downtown, and I was monitored for 30 minutes. By 5:30, we had decided we would be having Quinn “later” that evening… Again, things happened at super speed, and Quinn was born via C-section at 7:45pm. Quinn Renee is now our second ARPKD warrior. Unlike big sister Lillian, Quinn was able to come home with us immediately after a few hours in the NICU for monitoring.

Just two weeks after entering the world, Quinn had her first ICU stay due to low sodium. This was a short visit, but involved a lot of adjusting and monitoring to be continued at home. Fast forward to August, things got very scary, very quickly (I’m realizing a theme here as a share this). Joe was in Michigan for his father’s passing, and my sister had flown down to meet Quinn. Lillian, Quinn and I drove a street over to my dad’s house… as I took Quinn out of her car seat, I immediately knew something was wrong. My baby was grey and clammy… struggling to breathe.

Over the next 3 days, I called 911 three times, and we were transferred via ambulance twice, the entire time Joe is still in Michigan. On August 8th, Quinn was admitted to the Wolfson’s ICU, Joe arrived home late that evening. Tuesday, August 10th, Quinn was diagnosed with Hypertensive Cardiomyopathy, having only 15% heart function. Our world felt broken. At that time, it was explained to us the Quinn was hanging over the edge of a cliff, barely holding on. There are moments from those first few weeks I didn’t share then…

There were too many times I saw my baby fighting for her life- literally. I stared day in and day out at an emergency surgical resuscitation kit, prepared and ready at her bedside… I stared at her resuscitation plan, terrified, feeling like I am choking on my worst fears. We struggled with infertility and 3 miscarriages for over 6 years, so Quinn not only is another ARPKD miracle, but a rainbow baby. Never in a million years did I anticipate ARPKD AND this… this felt so much worse. It felt like I was losing her, losing the miracle we prayed for for so long. There were so many ups and downs in her extensive ICU stay. After a week, she was transferred to the Cardiac Intensive Care Unit where she would stay for several weeks. She came home on 12 medications and an extensive outpatient care plan… she also came home with an amazing group of doctors and nurses that we will forever love, cherish and be close to.

Unfortunately, Quinn was only home for 2 days before being readmitted to the CVICU for an infection. Luckily, it was a shorter, simpler stay. Still, hard nonetheless.

She is now nearing normal heart function, and being followed very closely by her beloved cardiologist and nephrologist. We transferred her nephrology care to the same Gainesville Doctor Lillian sees after numerous issues and errors with her Jacksonville doctor.

So, needless to say, Joe and I are exhausted. I actually don’t even think that’s an accurate description anymore, were far passed that! We’re in a constant state of worry. Between Lillian’s labs, risk for rejection and immune compromised state… and Quinn’s heart function, blood pressure and also compromised state, there is a lot of high stress moments and fear.

All of this being said, we are blessed beyond measure. Lillian’s surgery happened so quickly… but immediately, neighbors stepped in to watch the dogs, mow the lawn, send meals, offer hospitality, and send numerous care packages. We came home to the streets decorated in green ribbon and friends in driveways welcoming Lillian home to a decorated home and yard with goodies! Quinn’s CVICU stay not only was hard on Joe and I, but Lillian. She did not handle the anxiety well, but without the help of friends and her amazing teachers and counselor, we would have struggled much more. We never had to worry about a meal, whether be it at the hospital or home, for 8 weeks. We were gifted Starbucks to keep us going and gas for the constant 40 minute drive multiple times a day. Joe was out of work for 10 weeks, and our family, friends and neighbors stepped up in a big way so we could all be where we needed to be. Someday I will find better words than “thank you”… I promise!

It feels like the last 6 months have flown by, but at the same time, its been the longest 6 months of our lives. We are beyond blessed to have the utmost amazing support. I promise to do better to update this site!

Please continue to share the girl’s stories, spread awareness, send love and lots of prayers. Lord knows we need them, CONSTANTLY! They are sooooo appreciated!

Always a Winding Road

Well, as I stated in my last blog it’s been quite the year for me. It seemed at the time that Joe and Lil we’re going to catch a break this year. Since my last post I had hand surgery to remove a cyst from a burn and emergency gallbladder surgery. Yeah, I’m done with 2018. I was scheduled to have back surgery to clear some space where the disc was pressing on the nerves, but after a recent mri it seems the problem is with the actual disc itself, not the pressing factor. Unfortunately for my that means more time, more tests and most likely a bigger surgery. We will see how that all plays out over the next month with tests and follow ups.

Lillian has been thriving. She adores school and is doing fantastic. Unfortunately, about 3 weeks ago she came down with a cough and high fever of 104.5. After testing negative for flu, strep and uti, her pediatrician ruled it as viral. After having these symptoms for 4 days, I noticed on Halloween that her breathing seemed abnormally fast. My neighbor who’s a nurse came and listened. Lungs again sounded clear, heart rate was slightly high but that’s normal with fever. We kept a close eye on her the remainder of the evening.

The next day, she began vomiting, spiked a fever and her breathing was extremely rapid. I put my mommy foot down and we went to the ER. Again, lungs sounded clear but respiratory rate was extremely high. Again, negative for flu and strep. So, they sent her off for an X-ray. Lillian has severe pneumonia in her right lung. Her lungs were extremely inflamed causing her severe pain. At this point she was lethargic and could barely keep her eyes open. She was also severely dehydrated making all of her kidney levels get wacky.

So, we were admitted. The next 4 days were a roller coaster. She didn’t eat for 3 days, the smallest movement made her scream in pain, labs were drawn 7 times, iv fluids, nausea . My poor baby girl was miserable. This time was different for joe and I. Lillian was in so much pain and so lethargic, she couldn’t put up a fight for labs draws, iv checks, blood pressures. She couldn’t even get out of bed or stand on her own. When we’re admitted for blood pressures and UTIs, she generally feels half way decent and wants to play and doesn’t understand why she’s being poked and prodded. This time, she couldn’t fight it.

It was heartbreaking, but not having to console her after holding her down for yet another lab draw, made this stay slightly easier on mom and dad. That sounds awful but it’s true. We all knew she needed that care without a fight.

Lillian was out of school for 2 weeks. It’s been just over 3 weeks since her diagnosis and she’s still in some pain due to inflammation and doctors expect her cough to linger for another few weeks. Her school was so amazing during this time. I received messages from moms, her teacher, and her school nurse regularly. Her first day back, when her classmates saw her walking down the hall they all screamed and ran up to hug her. It made this mamas heart so happy to see the love and support from her new school.

During all of this, we have been prepping for our 3rd Annual Hope for Lillian Grace Reindeer Run. I know, I know, our plates are always overflowing. Lillian is so excited once again this year. It’s amazing, as she gets older she is truly grasping what all of this means. That all of these people that sponsor, run, pray, share, and donate- they all adore her. Her spirit, her faith, her fight, her spunk. The other night she was praying before bed and she said “Dear God, please don’t make me hurt anymore” While this broke my heart, it also comforted me that she knows she can turn to Him. She was even talking to Him in her sleep that night. 😂

She’s a spitfire. And she makes this mama so proud.

If you have time, please share our story. We would love to beat last years race attendance!


Sigh of Relief

Well, clearly it’s been sometime since I’ve updated on our website. That’s not to say it’s been an uneventful year, more so busy than anything! It’s been a year of ups and downs, but fortunately today we were given a sigh of relief.

Lillian has been doing fantastic this year. We’ve moved into a new county where she will start at a brand new school as a kindergartener in one of 7 classes! It’s a huge school however she will be getting state awarded education and there will be a registered nurse at school at all times! This is our WHY behind moving. It’s scary for a mom when schools tell them they would refuse to give their daughter medication, to come up 3x a day to give it myself. Knowing a highly educated nurse will be there daily, building a relationship with her multiple times a day is refreshing and reassuring.

At the beginning of the year, I lost my best friend to cancer. It was a knife like I never expected, and  she was a HUGE advocate for Lillian. She was there at the drop of the dime the second I needed her. 2 days after her funeral, the first week of February, I had hip surgery. Since then I’ve also struggled with bulging discs in my low back. It’s been a whirlwind, and the move was a huge positive point for us.

To say the year has been busy is an understatement! Through all of this though, my surgery, my friends passing, my back, the move, a new puppy(!), Lillian has stayed her spunky, resilient self! She graduated preschool like a champ, finished summer swim lessons and starts dance again in 3 weeks! I can’t believe my baby is registered for Kindergarten.

We saw Lillian’s kidney team for the first time this summer today. Due to a big surprise coming up that we will annouce in a few weeks, we felt like we were once again holding our breaths. Hearing the pride in Lillian’s doctors voice is so refreshing. They truly do love each other. Lillian’s creatinine and bun has gone up ever so lightly, HOWEVER, he thinks it’s more due to funky labs from her being sick and on antibiotics. She’s tiny, but growing on track and all other levels looks great. We meet with the transplant team at the end of the month just as a follow up. He emphasized today to ensure them that there is no rush for living donor transplant because she’s remaining stable.

Yes! Thank you God, huge sigh of relief! I am so grateful for our local team.

I am also excited to announce the 3rd Annual Hope for Lillian Grace Reindeer Run is set to take place December 1! Last years growth was astounding, let’s make this years even greater! More details to come!

I will be posting our exciting news on a surprise for Lil next week! Sorry it’s been so long since I’ve posted, like I said, things have been a little crazy this year! As always, thank you for the unending love and support for our little family.



2nd Annual Hope for Lillian Grace Reindeer Run

WooHoo! Can you believe that our 2nd Annual Hope for Lillian Grace Reindeer Run is 1 month away! I cant express how excited our family is! With Lillian starting her transplant journey in just one week, this race takes on a whole new importance for our family. Please, feel free to share our journey! The more shares, the more awareness. The more shares, the more prayers! Below is the link to register for the race through First Place Sports and I’ve also copied the Facebook event. I will be publishing a blog next week after Lillian’s all day appointment in Gainesville with the transplant team. Please keep us in your prayers as we travel there, pray for us as we explain things to Lillian next week, and as we meet the team and she goes through a full day of testing!

Hope Starts Here 5K

The Appointment We Feared For

For the last 4 1/2 years we did our best to prepare ourselves for the worse. We know very well what this ugly disease has in store. We know worse case scenarios, we know best case scenarios. Joe and I attend appointments together in fear of the appointment we hear its transplant time. We’ve done everything we can to be ready for that appointment.

Lillian’s been thriving. Aside from a few minor infections, the last three months have been good. I feel as if I’m almost on autopilot. We monitor her diet and blood pressure closely. Her blood pressure has been so consistent its almost scary. She’ll have days where the readings are identical. We’ve had a fun summer! We’ve had countless cookouts with friends and family, zoo dates, craft days, pool time. We’ve enjoyed some peace and quiet.

Until yesterday. Yesterday was the day I was talking about before. Yesterday was the day I mentioned in a dozen other posts. Anxiety is always high on appointment days because were always fearing that one appointment. But it turns out to always be okay.

Yesterday wasn’t okay. I still can’t quite grasp what has happened, what will happen. As my beautiful daughter sat on the ground building the highest block tower she possibly could, tears streamed down my face as her doctor explained to us her function has drastically declined, its time. As much as I have tried for over four years my heart wasn’t ready, my heart would never be ready to face this. I couldn’t breathe. It felt like my entire world was moving full speed around me, expect for me, I was standing in the background hearing it all and feeling my heart crumble. This is my baby, my sweet baby girl who is only 4 years old and about to start preschool. This is my baby. I’m just not ready, were not ready…

Lillian went from having 40% function for the last 2 years, to having less than 25% within a 3 month span. As a group, we have always been on board with a preemptive transplant, meaning we chose to attempt transplant before Lillian needs dialysis, which is generally started when there is approximately 15% function left.  We will be working with the UF Transplant Team out of Gainesville, FL. We are also putting Lillian on a full renal dialysis diet to try and take as much stress of her kidneys as possible. Within the next week we will hear from both the transplant team and a new dietician. Generally speaking, it takes approximately 3-6 months to get in with the transplant team. At that time, we will begin Lillian’s invasive transplant workup to see exactly what her body needs from a donor. Once that workup is complete, we will begin our search for a living donor. God willing, we have a family match for my sweet girl. Until then, we will be doing everything we can to keep her kidneys going strong. Well be following strict diet restrictions, keeping a close eye on blood pressure and supplements, and doing labs and office visits every 3-4 weeks.

As parents, Joe and I are terrified. We still have so many questions that won’t be answered until we meet with our transplant team. Our lives have felt like a roller-coaster that we’ve begged to get off for awhile now. In addition to Lillian’s journey, we’ve experienced infertility, loss, disease and heartache behind closed doors. I would be lying if I said our faith wasn’t on edge. We’re hurting and were angry. As parents, you never want to see or hear your child will go through something so huge, whether you anticipated it or not, it doesn’t make the blow any easier.

We haven’t been able to choke down the tears just yet. Our fears and heartache are still very raw, as its only been 24 hours since receiving this news. Like I said, our faith hasn’t been at its strongest points the last few months. However, for me, my Christian music is my biggest source of prayer lately. I makes me feel human, forgiven, and relatable. Driving today, I blasted my stereo on high as one of my favorite songs came on.

“Oh my soul, oh how you worry, oh how you’re weary, from fearing you lost control. This was the one thing, you didn’t see coming and no one would blame you, though. If you cried in private, if you tried to hide it away, so no one knows. No one will see, if you stop believing. Oh my soul, you are not alone. There’s a place where fear has to face the God you know. One more day, He will make a way. Let Him show you how, you can lay this down, cause you’re not alone.”

In that very moment, I just wanted Him to know I’m here, and I’m hurting, but I will never lose hope or faith.  I found myself wanting to be back in the same pew I found myself in nearly 5 years ago after Lillian’s diagnosis. I found myself praying, hoping and wishing for a sign, a feeling that He was there. Then it hit me. I don’t need a new sign, I don’t need a new feeling, that sign, and purest symbol of hope I could ever wish for is the same one that kisses me every night before bed. Its the brightest blue eyes that looks up at me wiping my tears. Its the beautiful smile that screams “I LOVE YOU TOO!” Its my rambunctious, oh so brave 4 year old that He gifted me 4 1/2 years ago.

Am I angry at everything my family has been dealt? Absolutely, more than you will ever know. But God knows that, He’s heard my cries and screams, He’s seen my tears and felt my pain. Again, I am downright terrified. I don’t truly know what to expect. But I know we are not even close to going through this alone. God will never abandon myself, my husband or my daughter.

Thus far, we have only told family and close friends. However, one of the most beautiful things we’ve ever experienced is seeing what the power of prayer can do, what our village of support can do. And, putting it blunt, we need you all now more than ever.

At this point, we have chosen to not tell Lillian what is going on. Until we meet with the transplant team, she will not know. She is a very smart little girl and knows very well her kidneys are sick. She knows what she can and cannot eat and can tell you why. She knows names of her medications and what they are for. She knows her kidneys are big and have boo boos. And that’s enough for my sweet 4 year old to know right now.

After talking to friends and family, and getting asked “what can we do” a lot in the past day, we’ve come up with the idea to create Lillian’s adventure list. I asked Lillian if she had one thing, ANYTHING she could do, what would it be. She answered, “to ride the horses again, to ride Papa’s horse.” Nearly 2 years ago we went horseback riding in Gaitlinburg, TN. Now, I am not sure if the ranch or horse are even around anymore, but that will be on my to do list. We will continue to think of fun activities and adventures we can spoil our girl with, because life post-transplant is very secluded for the first year. We want her to enjoy the energy, strength and security she can right now.

We are also in the works of organizing our Second Annual Hope for Lillian Grace Reindeer Run. And let me tell you, this race just got a whole lot more important to our family. We are hoping to work with a running company this year so we can watch it grow even bigger. So stay tuned for race information and sponsorship options!

Again, this is something we weren’t prepared for or expecting to hear yesterday. We’re still processing the news ourselves, still trying to grasp that this time, this is actually happening. There are times where we fall to our knees in pain and tears, there are times we just hold each other and cry, and there are times were downright speechless. I laid in Lillian’s bed for an hour last night, staring at the tiny sweat beads forming on her nose, brushing her blonde hair back from her cheeks, while tears streamed down my cheeks and hit the pillow next to her. This will not be easy in the slightest. But we do know we are not alone, and God has blessed us with the strongest little girl in the world.


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Previous Blog Found Here

From the  very beginning we chosen to document our journey with Lillian and ARPKD. We’ve written about hospital visits, labs, medications. We’ve celebrated milestones and cried over setbacks. Our blog has been a safe place for us. We can write about our pain and worry, excitement and pride. We plan to continue blogging about our journey here, however, if your curious about the rollercoaster before today, you can find all of our past blog post on the link below.