93 days and she's home

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Kishkumen
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93 days and she's home

Post by Kishkumen » Fri Jan 31, 2020 4:28 pm

Many of you heard a while back that my daughter was hospitalized due to severe seizures.

Today, after 93 days in the hospital, she came home.

She is not completely recovered. It's unlikely she will ever regain a complete recovery. Her condition is called F.I.R.E.S. and caused significant brain injury and some brain atrophy.

That being said, she is doing much better today than anyone would have imagined even 4 weeks ago. She can move her limbs, show facial expressions and even responds "yes/no" by moving her head.

There are still many miles to walk in in her recovery. We are hopeful was the future holds.

I know I haven't said much about it here. Regrets, my attention has been focus elsewhere.

If you want to follow her journey - we update on a Facebook page Walking through F.I.R.E.S. with Ruby June

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wtfluff
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Location: Worshiping Gravity / Pulling Taffy

Re: 93 days and she's home

Post by wtfluff » Fri Jan 31, 2020 6:17 pm

Great news Kish!

Give your family hugs from a random, fluffy, internet stranger.
Faith does not give you the answers, it just stops you asking the questions. -Frater Ravus

Keep the company of those who seek the truth - run from those who have found it -Václav Havel

We are secrets to each other

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Hagoth
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Re: 93 days and she's home

Post by Hagoth » Fri Jan 31, 2020 6:41 pm

That's wonderful Kish. Best of luck to all of you. I believe in miracles but they don't require magic. Just love.
“The easy confidence with which I know another man's religion is folly teaches me to suspect that my own is also.” -Mark Twain

Jesus: "The Kingdom of God is within you." The Buddha: "Be your own light."

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græy
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Re: 93 days and she's home

Post by græy » Fri Jan 31, 2020 7:29 pm

Happy to hear she's home with you now. Love her and be loved by her!
I'm better than dirt... well most dirt. Not that fancy store bought stuff, I can't compete with that... full of nutrients and everything. -Moe Sizlack

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Corsair
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Location: Phoenix

Re: 93 days and she's home

Post by Corsair » Fri Jan 31, 2020 9:00 pm

We are so glad to hear this. The Flying Spaghetti Monster has smiled upon her.

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Random
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Re: 93 days and she's home

Post by Random » Fri Jan 31, 2020 9:44 pm

I'm glad she's home, Kishkumen. Your family has gone through such a scary time! I hope she improves more and more and more. <3
There are 2 Gods. One who created us. The other you created. The God you made up is just like you-thrives on flattery-makes you live in fear.

Believe in the God who created us. And the God you created should be abolished.
PK

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StarbucksMom
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Re: 93 days and she's home

Post by StarbucksMom » Sat Feb 01, 2020 1:22 pm

Wonderful news!!! Saw her FB page, she’s come so far. She is beautiful.

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jfro18
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Re: 93 days and she's home

Post by jfro18 » Sat Feb 01, 2020 1:45 pm

This is great news!

Considering the last update, it sounds like things have been taking on a much better path, and that is reason for celebration and hope.

So glad you're home - that is just fantastic news!

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Linked
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Re: 93 days and she's home

Post by Linked » Sat Feb 01, 2020 4:29 pm

That is great news! I'm so glad to hear she is able to come home!
"I would write about life. Every person would be exactly as important as any other. All facts would also be given equal weightiness. Nothing would be left out. Let others bring order to chaos. I would bring chaos to order" - Kurt Vonnegut

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FiveFingerMnemonic
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Re: 93 days and she's home

Post by FiveFingerMnemonic » Sat Feb 01, 2020 8:20 pm

Fantastic progress for such a dire situation. Happy for your family.

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2bizE
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Re: 93 days and she's home

Post by 2bizE » Sat Feb 01, 2020 9:21 pm

Thank you for the update. We are pulling for your daughter and your family.
~2bizE

Reuben
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Re: 93 days and she's home

Post by Reuben » Sun Feb 02, 2020 2:33 am

Kish, that's so good to hear. I hope you're all finding some measure of peace.
You were born to trust, not fear. It is your birthright.

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blazerb
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Re: 93 days and she's home

Post by blazerb » Sun Feb 02, 2020 6:30 am

That's good news. Take care of your family and yourself.

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Palerider
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Re: 93 days and she's home

Post by Palerider » Sun Feb 02, 2020 5:48 pm

Can't imagine what you and yours have been through the past few months. So glad things are looking better. Makes us grateful for even the smallest gifts.
"There is but one straight course, and that is to seek truth and pursue it steadily."

"Truth will ultimately prevail where there is pains to bring it to light."

George Washington

annotatedbom
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Re: 93 days and she's home

Post by annotatedbom » Sun Feb 02, 2020 8:36 pm

Thus is great news. So glad to hear she’s doing so well she could come home. May she continue to improve beyond your expectations.

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moksha
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Re: 93 days and she's home

Post by moksha » Sun Feb 02, 2020 10:19 pm

Kishkumen, best wishes to all your family.
Good faith does not require evidence, but it also does not turn a blind eye to that evidence. Otherwise, it becomes misplaced faith.
-- Moksha

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Mormorrisey
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Re: 93 days and she's home

Post by Mormorrisey » Mon Feb 03, 2020 12:24 pm

Glad to hear your daughter's home. Best wishes on her battle with this horrible disease.
"And I don't need you...or, your homespun philosophies."
"And when you try to break my spirit, it won't work, because there's nothing left to break."

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crossmyheart
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Re: 93 days and she's home

Post by crossmyheart » Tue Feb 04, 2020 1:25 pm

I have a child with multiple physical disabilities and I have great sympathy for you and the trials you have just endured. I imagine you were torn in so many directions with a job and bills, (and other children I assume?) not to mention this all happened over the holidays. Even everyday normal life's challenges feel insurmountable. The level of exhaustion must have been indescribable. I hope that with her home, you and your family are able to find some rest.

I am sure you have already received a lot of unsolicited advice- so adding my own: closed Facebook groups on specific diagnoses and in-state organizations are as valuable as gold. Finding parents who have been through it or are going through it can help you with emotional support and help you with finding resources you may not know about. It may feel like you have too much on your plate, but I encourage you to look for local organizations that support special needs/medically fragile children as soon as you can because resources can sometimes be scarce. They can also help when it comes time to navigate an IEP. IEPS for medically fragile children are a beast with too many tentacles with PT/OT/ST, etc- it never ends.

Hopefully you had a good case worker at the hospital and you already have info...I could keep going- but I offer you hugs and support from afar. It will get easier.

Anon70
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Re: 93 days and she's home

Post by Anon70 » Tue Feb 04, 2020 3:10 pm

Great update! Glad she is home with family and hopeful for more recovery & improvements!

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MoPag
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Re: 93 days and she's home

Post by MoPag » Fri Feb 07, 2020 10:56 am

I'm so happy for you guys! She is so amazing! So many hugs for you guys!!!
...walked eye-deep in hell
believing in old men’s lies...--Ezra Pound

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