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

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!

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.

#hopeforlilliangrace