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