Little LoreLei’s Big Battle

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

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

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, ...
16/12/2024

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.
13/12/2024

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...
13/12/2024

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 ...
06/11/2024

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!! 🌈🎉🥳🎊🧁

Urgent care last night, 4am cuddles this morning, pediatrician this afternoon and we have an answer. Shes positive for s...
05/11/2024

Urgent care last night, 4am cuddles this morning, pediatrician this afternoon and we have an answer. Shes positive for strep.

Hopefully antibiotics kick in quick so we can get rid of this 103° degree fever and get well by her birthday celebration.

Having no immune system sucks

spoke to her doc at shands tonight. Lei stops cyclosporine today (finally!!!!!) and starts her new meds tomm morn. finge...
24/10/2024

spoke to her doc at shands tonight. Lei stops cyclosporine today (finally!!!!!) and starts her new meds tomm morn. fingers crossed, if it works its soooo much better for her body!

we stopped cyclo exactly a year ago and had turkey day in hospital, but this time we have a replacement, so feeling good about it!

**she also lost her fourth tooth tonight!

We spent today at Shands. felt refreshing to be back with her team. Still havent ruled out baptist but feel sooooooooo m...
18/10/2024

We spent today at Shands. felt refreshing to be back with her team. Still havent ruled out baptist but feel sooooooooo much more at home here. There are a few med changes (ones I actually like!) but her numbers today are worse than a month ago. Though we know from experience fluctuation is her normal so not panicking. Looking forward to seeing if these new meds work because they are WAY less harsh on her body. (fingers crossed, we tried something around this time last year and ended up being admitted for turkey day). Shes also going to have an ultrasound to see if her kidneys are still growing (🙏🏼).

Been dealing with a lot of scheduling issues with shands since last february, so we decided to try a new hospital today....
10/09/2024

Been dealing with a lot of scheduling issues with shands since last february, so we decided to try a new hospital today. No decisions made on an official switch and no test results in yet. but it was a very long day and im glad its all done. now crossing fingers for good numbers 🤞🏼🤞🏼🤞🏼

Ok they have just taken her back and put her under. Should be a quick surgery (ear tubes). And she was THRILLED to learn...
14/08/2024

Ok they have just taken her back and put her under. Should be a quick surgery (ear tubes). And she was THRILLED to learn this visit has no pokes!

Her ear surgery is officially scheduled for this wednesday 🙏🏼 (still no word from shands team on any appointments with t...
12/08/2024

Her ear surgery is officially scheduled for this wednesday 🙏🏼 (still no word from shands team on any appointments with them, so disappointing)

Ive been waiting to update until we have more to update. but i guess the update is that we dont. shands is down a retire...
06/08/2024

Ive been waiting to update until we have more to update. but i guess the update is that we dont. shands is down a retired nephrologist and they have stalled on the rehire so her last two appts have been cancelled. (this is the longest weve ever gone without bloodwork) There are physical signs of kidney failure we watch for (so far so good) but it sure would be comforting to know whats going on inside.

On another update she has started in the past six months to get ear infections, the last one this summer was three at the same time (inner, inner/outer). Because shes already on so many heavy meds the antibiotics were just too much, she will be scheduled for ear tube surgery.

All in all we are greatful for a summer of snuggles, her always happy face and really just want to know shes ok.

Had some blood drawn today for some worrisome symptoms that popped up. Dont want to say too much until the results come ...
10/05/2024

Had some blood drawn today for some worrisome symptoms that popped up. Dont want to say too much until the results come in but definitely anxiously awaiting. Shes in GREAT spirits, as usual ❤️

shes doing really well (despite her numbers) . shes back at school and as of this morning back on meds!! 🙏🏼❤️😅❤️❤️❤️
08/03/2024

shes doing really well (despite her numbers) . shes back at school and as of this morning back on meds!! 🙏🏼❤️😅❤️❤️❤️

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