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!

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