Thanksgiving by SignyM

REAL WORLD EVENT DISCUSSIONS

Thanksgiving

POSTED BY: SIGNYM
UPDATED: Monday, November 29, 2004 10:12
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Monday, November 29, 2004 7:28 AM

I believe in solving problems, not sharing them.

I thought I would post this from my other internet home. It reminds me how much I have to be thankful for, and that there are heroes in our everyday lives, doing things that only heroes do. This is a mother's post. She has already lost one daughter to mitochondrial disorder, her other daughter, 9 y/o Morgan, is dying.

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Hi all...thought I would leave a little update on us and let you know what is going on.

Morgan has continued to steadily decline, but much to the medical worlds disbelief she battles on.

She is unresponsive the majority of the time, due to illness and medications we have had to use to keep her comfortable. In the last 2-3 weeks her illness seems to have deeply affected her neuro system and she began having extreme uncontrolled movements, headaches and uncontrollable seizures.
She is on a multitude of medications (morphine, haldol, ativan, chloral hydrate) to try to control some of these symptoms. She is still having lots of breakthroughs though.
She is spiking temps at least twice daily and thats when we see the majority of the problems. She is having hundreds of myoclonic seizures a day that thankfully aren't that strong, but still disrupt her sleep and comfort.
We are having to give her generous doses of morphine before we try to move her or bath her because she is so umcomfortable with being moved.
We are trying to reposition her often because she has lost so much weight that we are so afraid of bedsores.

Her central IV line is severely infected and we have given up the TPN and using it. She is intolerable of most anything in her j-tube so it has been a huge battle to keep her hydrated.

On a positive note hospice has been wonderful with helping us battle through and provided emotional support as well.
My parents have come out twice to spend time with us and try to help. Thanksgiving was very hard, but I know in my heart I have so much to be thankful for.
So...I will continue to love my little girl and do the best I can for her until her time on earth here is done. I love her so very much.

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Monday, November 29, 2004 8:26 AM

CONNORFLYNN

Thanks Signym for the Great post. It's always a humbling experience to be reminded how precious life is and how infrequent many (including myself) forget how lucky we truly are.

Just out of curiosity, is there a fund already in place for this family that those of us Browncoats who are able, might be able to send some money to help ease any financial burdens?

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Monday, November 29, 2004 8:56 AM

GEEZER

Keep the Shiny side up

It's good that your friend is working with the hospice folks. They're tops on my list.

"Keep the Shiny side up"

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Monday, November 29, 2004 10:12 AM

SIGNYM

I believe in solving problems, not sharing them.

ConnerFlynn, that is very generous of you. Morgan's mom is financially stable, but your suggestion was received with a grateful heart. Knowing that strangers care is a gift all on it's own. Thank you.

Geezer, thank you for your post. You sound like you've "been there, done that".

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