Little LoreLei’s Big Battle

Little LoreLei’s Big Battle 7/7/21 we found Lei has Congenital Nephrotic Syndrome(rare kidney disease)full bio on gofundme link

First official day of summer break and she has another ear infection. (Hasnt even been off antibiotics a week from the s...
05/28/2026

First official day of summer break and she has another ear infection. (Hasnt even been off antibiotics a week from the strep). Shes also having body aches we think are related to starting the Staten. Somebody somewhere send some good luck to this girl so she can have a little break from this constant onslaught of feeling cruddy!! Its heartbreaking to watch and I wish i could just put her in a bubble at this point!

Having no immune system is no fun at all.

LoreLei is an all or nothing kind of girl apparently, so she went ahead and tested positive for strep… BUT shes now been...
05/14/2026

LoreLei is an all or nothing kind of girl apparently, so she went ahead and tested positive for strep… BUT shes now been on antibiotics long enough that we are cleared for Kinder graduation in tallahassee tonight (and school tomorrow). We’ll be tired, but we’ll be grateful to be there 🙂

Well, this has been a CRAZY 48 hours (well two weeks actually because we first went to Tally ER last week knowing someth...
05/14/2026

Well, this has been a CRAZY 48 hours (well two weeks actually because we first went to Tally ER last week knowing something wasnt right, but got brushed off).

Long story short baby girl has had massive swelling in only one foot (Swelling is common in kidney disease but its not usually isolated) and it kept getting worse instead of better. Then when she got a fever we knew there was more going on.

So after her endocrinology appt in tally (shes finally on Statens for that high cholesterol) we were told to go to shands and expect a long admission to treat any clots, swelling or side issues that might pop up.

Although side issue did pop up (she has thyroid issues now but also told thats common with kidney disease… which now its fun wondering what else is ‘common’ and headed her way) she responded so well to treatments and all new meds that we will be able to go home!

Shes a fighter and a trooper. Ive seen so much growth and maturity in her this visit. Asking questions, staying informed and engaged. and cooperating. HELPING with her blood draws and watching closely because shes telling all the nurses “ i’m going to be a phlebotomist when I grow up and help kids like me” 😭😍

this girl. this girl is something else

(current daily med count with the four new ones from today-16)

I havent updated in a while because SO MUCH has happened in the past year. While LoreLei has been sick and currently mis...
02/26/2026

I havent updated in a while because SO MUCH has happened in the past year. While LoreLei has been sick and currently missed this entire week of school, I hate to say it seems “small picture” (bc shes been miserable and we are all so tired!). I say that though because we just got her cholesterol levels and they are through the roof. They even used the word “morbid” which ive not seen yet (though “end stage renal failure” has but I dont know why It didnt trigger as much). Shes going to have to start a FIFTEENTH medication, a statin. Itll require weekly checks of her liver health and other things, itll cause muscle loss and aches too. Its scary. Its scary to put her tiny body on it. Its scary to not. All this being said, I am grateful EVERY SINGLE DAY she does not have a painful disease. Please dont let these new meds change that!!

Closing out the year with good news and bad news. Bad first, she has pneumonia again. (So dissapointed in the IGIV plasm...
12/31/2024

Closing out the year with good news and bad news.

Bad first, she has pneumonia again. (So dissapointed in the IGIV plasma infusion, shes been constantly sick with something all break).

Good news. She finally outgrew her egg allergy! (Very exciting to her restricted diet!). Shes become a bit of a scrambled egg addict these past three days lol.

Happy New Year to all, and Wishing good health and eggs to all! 🎆🍳

we’ve had a GREAT weekend at home. crazy two days ago she was so sick. PLASMA WORKS! Thank you to all who donate blood, ...
12/16/2024

we’ve had a GREAT weekend at home. crazy two days ago she was so sick. PLASMA WORKS! Thank you to all who donate blood, her (new) immune system kicked in faster than it ever has in her life. We are in talks of repeating this every three months. game changer (so far) 🙌🏼

this is so exciting

Busted out, headed home to rest and recover.
12/13/2024

Busted out, headed home to rest and recover.

still thinking we are going home today but she is VERY fussy. arm a little swollen (but likely from overnight infusion a...
12/13/2024

still thinking we are going home today but she is VERY fussy. arm a little swollen (but likely from overnight infusion and should go away). But they nurses noticed how grumpy she is and sent child life in with a big bag of toys, books and games for her to keep donated by Books a Million. What a wonderful thing they did by thinking of these kiddos!! 🙌🏼

Long story short (bc im tired as heck!!). Lei has been home sick all week with horrible stomach issues and bad cough. Te...
12/12/2024

Long story short (bc im tired as heck!!). Lei has been home sick all week with horrible stomach issues and bad cough. Test results came back today she has ecoli. Shes been admitted to TmH overnight (hopefully just that) for fluids and a 7 hour IGG (immune system boost) infusion. She cant take antibiotics so this is the best chance to finally knock this out 🤞🏼🙏🏼🤦🏻‍♀️

and now she also has pneumonia as well the ecoli … lawdy

Shes FIVE. Five is such an emotional birthday because when she was first diagnosed the doctors threw that number around ...
11/06/2024

Shes FIVE. Five is such an emotional birthday because when she was first diagnosed the doctors threw that number around A LOT (“she will need a transplant before shes 5” “she will have a decline by age 5” “we’ll know more before she turns 5”) and honestly I remember thinking how far away that sounded. But here. we. are!! Every original organ in tact, shes at school, shes happy and shes thriving!! Happy 5th birthday baby girl you are the toughest kid I know!! 🌈🎉🥳🎊🧁

Address

1300 Miccosukee Rd, Tallahassee Fl
Tallahassee, FL
32308-5359

Website

Alerts

Be the first to know and let us send you an email when Little LoreLei’s Big Battle posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category