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

went to Shands this week and currently her kidneys are functioning at 45% capacity and overall it was a good visit. she ...
09/04/2026

went to Shands this week and currently her kidneys are functioning at 45% capacity and overall it was a good visit. she was the BEST at this appointment. a pro, and i couldnt be prouder. she put her arm out for that blood draw with zero hesitance.

however, I did blow a tire out on the way there on I 10 and I’m very grateful that everything ended well with that situation. i’m driving a rental car for now and we will figure that out as it comes.


all this just continues to make you incredibly grateful for every day and every moment and every test that comes back. Also, we finally found out her blood type after all of these blood draws she is b positive . and to me that just fits her personality to a T.

Her two current new medication‘s prove to be working and that’s another thing to be grateful for

But

Im a little nervous that we are still declining, feet are swollen and we are told nothing we can do about it. as the decline occurs its just watch and wait. some of her potential threats when listed scare the SH** out of me…but shes happy, she not hurting and we are going each day. shes the best. 

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

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

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