Author Topic: nearly lost our daughter this wee  (Read 4166 times)

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Offline calligraphqueen

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nearly lost our daughter this wee
« on: February 09, 2008, 04:01:00 PM »
Please pray for our family. On Sunday my Rett syndrome dd had her first tonic clonic seizure. While seizure activity is 'expected' at some point in the life of a girl with Rett, we had only experienced petit mal seizures up until this point. Heather is 5 1/2.  By monday she had 3 more and on the last one she was in the car on the way to the neurology dept. at UVA. She could not reboot her system and start breathing on her own after the last one. Dh performed cpr, met me back at the house where I had called 911 to meet us.
Our local ER knew nothing about Rett, overheard the attending ask UVA "just what is Rett anyway?"  They took Heather and I by ambulance to UVA that night, though it was dh that had packed for the trip. He forgot to consider how violently car sick he gets and the first amb ride had already done him in. so I had nothing, no clothes or toothbrush and stuck up at UVA with my child. We didn't even have her diapers and such. What a mess. Dh traded with me tuesday, and I went home to tend to our other children who were sick with the virus that triggered the seizures in Heather.
She seized again Wednesday morning, twice. She was supposed to have been released, so I suppose it's good she did it in front of them. they had trouble believing I could tell a seizure from a bunion and spoke down to me the whole time. I was several days without sleep so I let them.  ??? Dh had no such trouble due to his gender.
Heather finally came home on Thursday evening, sick as a little angel could be. She is now on her first of probably many anti seize medications. Keppra. Hard to tell the side effects if any as she is still quite ill with the bug.
They said if dh hadn't done cpr and called the amb. she would have died as the last seizure took so much out of her. Rett girls nervous systems are just going crazy the entire day, anything like a virus or immune attack sends them over the edge.
Tired, sick, run down and discouraged here. But glad my man and baby are home and that we caught this in time.
Rebecca

Offline FrChris

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Re: nearly lost our daughter this wee
« Reply #1 on: February 09, 2008, 04:03:29 PM »
May the comforting hand of the Lord visit your entire family!
"As the sparrow flees from a hawk, so the man seeking humility flees from an argument". St John Climacus

Offline Heorhij

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Re: nearly lost our daughter this wee
« Reply #2 on: February 09, 2008, 04:09:32 PM »
LOrd, have mercy on your handmaiden Rebecca, on her daughter Heather and on her entire family!
Love never fails.

Offline Veniamin

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Re: nearly lost our daughter this wee
« Reply #3 on: February 09, 2008, 04:32:30 PM »
Lord have mercy!
Artillery adds dignity to what would otherwise be a vulgar brawl. ~Frederick the Great

Offline Entscheidungsproblem

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Re: nearly lost our daughter this wee
« Reply #4 on: February 09, 2008, 05:01:28 PM »
Lord, have mercy.
As a result of a thousand million years of evolution, the universe is becoming conscious of itself, able to understand something of its past history and its possible future.
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Offline Jakub

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Re: nearly lost our daughter this wee
« Reply #5 on: February 09, 2008, 05:49:15 PM »
Prayers...

james
An old timer is a man who's had a lot of interesting experiences -- some of them true.

Grant me the senility to forget the people I never liked anyway, the good fortune to run into the ones I do, and the eyesight to tell the difference.

Offline Salpy

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Re: nearly lost our daughter this wee
« Reply #6 on: February 09, 2008, 08:35:47 PM »
Lord have mercy!

Offline TinaG

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Re: nearly lost our daughter this wee
« Reply #7 on: February 09, 2008, 09:18:05 PM »
I pray the Theotokos and her mother St. Anna are with all of you and through their prayers your daughter is brought to health.  I cannot even imagine how difficult this is for any family - only the Lord knows your needs and he will be with you.
On the spiritual path somewhere between the Simpsons and St. Theophan the Recluse, but I still can't see the Springfield city limits sign yet.

Offline jlerms

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Re: nearly lost our daughter this wee
« Reply #8 on: February 09, 2008, 09:28:29 PM »
Lord have mercy on your dear Heather and her whole family.  Rebecca II can only mirror Tina's words in that I cannot even conceive how heart wrenching this is for you.  I can't imagine how I would deal with such a thing with one of my little girls.
You are in my prayers!

Juliana

Offline ozgeorge

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Re: nearly lost our daughter this wee
« Reply #9 on: February 09, 2008, 09:54:45 PM »
Lord have mercy on the works of Your Hand.
If you're living a happy life as a Christian, you're doing something wrong.

Offline Fr. George

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Re: nearly lost our daughter this wee
« Reply #10 on: February 09, 2008, 10:39:58 PM »
Lord, have mercy, grant strength, peace, and health.
"O Cross of Christ, all-holy, thrice-blessed, and life-giving, instrument of the mystical rites of Zion, the holy Altar for the service of our Great Archpriest, the blessing - the weapon - the strength of priests, our pride, our consolation, the light in our hearts, our mind, and our steps"
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Offline ComingHome

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Re: nearly lost our daughter this wee
« Reply #11 on: February 09, 2008, 10:53:16 PM »
Lord, have mercy.

Offline Αριστοκλής

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Re: nearly lost our daughter this wee
« Reply #12 on: February 10, 2008, 04:41:25 AM »
Lord have mercy!
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Offline Riddikulus

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Re: nearly lost our daughter this wee
« Reply #13 on: February 10, 2008, 05:05:34 AM »
Lord, have mercy on the work of your hands.
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Offline Psalti Boy

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Re: nearly lost our daughter this wee
« Reply #14 on: February 10, 2008, 05:46:43 AM »
Lord Have Mercy.  You all remain in my prayers.

Offline Starlight

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Re: nearly lost our daughter this wee
« Reply #15 on: February 10, 2008, 10:28:36 PM »
Rebecca, you are a heroic mother. I admire of your courage.

My prayers for the family...

Offline PeterTheAleut

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Re: nearly lost our daughter this wee
« Reply #16 on: February 10, 2008, 11:24:19 PM »
Lord, have mercy!
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Offline kmm

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Re: nearly lost our daughter this wee
« Reply #17 on: February 11, 2008, 03:34:32 AM »
I will pray for you and your daughter and your family. It can be so painful to be a parent - so hard when you love so much...
« Last Edit: February 11, 2008, 03:35:31 AM by kmm »

Offline calligraphqueen

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Re: nearly lost our daughter this wee
« Reply #18 on: February 15, 2008, 06:47:38 PM »
We are still adjusting to a seizure med that is known for altering personality and mood. Come to find out it's not been tested on children under age 16, which is the same reason that they just pulled all those cold meds off the shelf for kids!  I am irritated, constantly at battle advocating for my daughter and adjusting to what is at least for now a different person.  I thank you all for your prayers, they are really a blessing to us. Pray I don't do anything wrong and that we can get through these next several days and have her body adapt to this drug-which I hate but what else can a person do with seizures? I want my daughter back to her sweet gentle personality.

Offline FrChris

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Re: nearly lost our daughter this wee
« Reply #19 on: February 15, 2008, 07:02:16 PM »
Again, Lord, we pray and entreat: have mercy and comfort all involved!
"As the sparrow flees from a hawk, so the man seeking humility flees from an argument". St John Climacus

Offline ialmisry

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Re: nearly lost our daughter this wee
« Reply #20 on: February 15, 2008, 07:50:13 PM »
Grant health and strength to your servants, O Lord!

I too have a child with an illness, a terminal kidney disease called Alport's syndrome.  Mom is deep denial (it is inherited through the mother). So far he has only lost his hearing, but it also attacks the eyes (so far, no development there) before renal failure.  Though fatal, it can be managed, so it doesn't have to be a death sentence (the problem is mom and the divorce court).  My other son has GI problems.  So it can be difficult with children with difficulties.  I pray you have the strength, and you will see how parenthood is still all worth it.
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Offline Mo the Ethio

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Re: nearly lost our daughter this wee
« Reply #21 on: February 15, 2008, 10:44:38 PM »
Lord comfort thy servant
"Forgive your enemies, but never forget their names."
- John F. Kennedy (1917-1963)

Offline jlerms

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Re: nearly lost our daughter this wee
« Reply #22 on: February 15, 2008, 11:32:07 PM »
Lord have mercy on Heather and her family.

Offline Quinault

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Re: nearly lost our daughter this wee
« Reply #23 on: May 16, 2009, 02:30:12 PM »
Any new developments?

Offline stashko

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Re: nearly lost our daughter this wee
« Reply #24 on: May 16, 2009, 02:36:01 PM »
Lord Have Mercy!.On your Family..
ГОСПОДЕ ГОСПОДЕ ,ПОГЛЕДАЈ СА НЕБА ,ДОЂИ И ПОСЕТИ ТВОЈ ВИНОГРАД ТВОЈА ДЕСНИЦА ПОСАДИЛА АМИН АМИН.

Offline FrChris

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Re: nearly lost our daughter this wee
« Reply #25 on: May 16, 2009, 03:49:18 PM »
While this thread is nearly a year and a half old...

Calligraphqueen:

Please feel free to let us know what is going on. We do care about your family and you.

+FrChris
"As the sparrow flees from a hawk, so the man seeking humility flees from an argument". St John Climacus

Offline Starlight

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Re: nearly lost our daughter this wee
« Reply #26 on: May 18, 2009, 08:42:32 PM »
Hopefully, everything is okay.

Lord, have mercy. May God help your family, dear Calligraphqueen.