OrthodoxChristianity.net
October 26, 2014, 01:41:06 AM *
Welcome, Guest. Please login or register.

Login with username, password and session length
News: Reminder: No political discussions in the public fora.  If you do not have access to the private Politics Forum, please send a PM to Fr. George.
 
   Home   Help Calendar Contact Treasury Tags Login Register  
Pages: 1   Go Down
  Print  
Author Topic: nearly lost our daughter this wee  (Read 3531 times) Average Rating: 0
0 Members and 1 Guest are viewing this topic.
calligraphqueen
Elder
*****
Offline Offline

Faith: GOA
Posts: 341


« 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.  Huh 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
Logged
FrChris
The Rodney Dangerfield of OC.net
Site Supporter
Taxiarches
*****
Offline Offline

Faith: Orthodox Christian
Posts: 7,252


Holy Father Patrick, thank you for your help!


« Reply #1 on: February 09, 2008, 04:03:29 PM »

May the comforting hand of the Lord visit your entire family!
Logged

"As the sparrow flees from a hawk, so the man seeking humility flees from an argument". St John Climacus
Heorhij
Merarches
***********
Offline Offline

Faith: Orthodox
Jurisdiction: GOA, for now, but my heart belongs to the Ukrainian Orthodox Church
Posts: 8,576



WWW
« 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!
Logged

Love never fails.
Veniamin
Fire for Effect!
Archon
********
Offline Offline

Faith: Orthodox Christian
Jurisdiction: OCA Diocese of the South
Posts: 3,372


St. Barbara, patroness of the Field Artillery


« Reply #3 on: February 09, 2008, 04:32:30 PM »

Lord have mercy!
Logged

Artillery adds dignity to what would otherwise be a vulgar brawl. ~Frederick the Great
Entscheidungsproblem
Formerly Friul & Nebelpfade
Protokentarchos
*********
Offline Offline

Faith: Machine God
Posts: 4,495



WWW
« Reply #4 on: February 09, 2008, 05:01:28 PM »

Lord, have mercy.
Logged

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.
-- Sir Julian Sorell Huxley FRS
Jakub
Archon
********
Offline Offline

Posts: 2,748



« Reply #5 on: February 09, 2008, 05:49:15 PM »

Prayers...

james
Logged

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.
Salpy
Section Moderator
Toumarches
*****
Offline Offline

Faith: Oriental Orthodox Christian
Jurisdiction: Armenian Church
Posts: 12,735


Pray for the Christians of Iraq and Syria.


« Reply #6 on: February 09, 2008, 08:35:47 PM »

Lord have mercy!
Logged

TinaG
I am not a pessimist - I'm just grimly realistic!
High Elder
******
Offline Offline

Faith: Orthodox
Jurisdiction: OCA
Posts: 870


If only my family were this normal !


WWW
« 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.
Logged

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.
jlerms
High Elder
******
Offline Offline

Faith: Eastern Orthodox
Jurisdiction: GOA
Posts: 826


O sweet Jesus, cleanse my soul.


« 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
Logged
ozgeorge
I'll take you for who you are if you take me for everything.
Hoplitarches
*************
Offline Offline

Faith: Orthodox Christian
Jurisdiction: Oecumenical Patriarchate of Constantinople, the New Rome, the Great Church of Christ.
Posts: 16,382


My plans for retirement.


WWW
« Reply #9 on: February 09, 2008, 09:54:45 PM »

Lord have mercy on the works of Your Hand.
Logged

If you're living a happy life as a Christian, you're doing something wrong.
Fr. George
formerly "Cleveland"
Administrator
Stratopedarches
*******
Offline Offline

Faith: Orthodox (Catholic) Christian
Jurisdiction: GOA - Metropolis of Pittsburgh
Posts: 20,093


May the Lord bless you and keep you always!


« Reply #10 on: February 09, 2008, 10:39:58 PM »

Lord, have mercy, grant strength, peace, and health.
Logged

"The man who doesn't read good books has no advantage over the one who can't read them." Mark Twain
---------------------
Ordained on 17 & 18-Oct 2009. Please forgive me if earlier posts are poorly worded or incorrect in any way.
ComingHome
Elder
*****
Offline Offline

Faith: Yes
Posts: 302


« Reply #11 on: February 09, 2008, 10:53:16 PM »

Lord, have mercy.
Logged
Αριστοκλής
Merarches
***********
Offline Offline

Faith: Orthodox Catholic
Jurisdiction: American Carpatho-Russian Orthodox Diocese
Posts: 10,026


« Reply #12 on: February 10, 2008, 04:41:25 AM »

Lord have mercy!
Logged

"Religion is a neurobiological illness and Orthodoxy is its cure." - Fr. John S. Romanides
Riddikulus
Protokentarchos
*********
Offline Offline

Posts: 4,788



« Reply #13 on: February 10, 2008, 05:05:34 AM »

Lord, have mercy on the work of your hands.
Logged

I believe in One God, maker of heaven and earth and of all things visible and invisible.

Nothing in biology makes sense except in the light of evolution.
Theodosius Dobzhansky, Russian Orthodox Christian (1900-1975)
Psalti Boy
High Elder
******
Offline Offline

Faith: Christian
Jurisdiction: Don't need one
Posts: 842



« Reply #14 on: February 10, 2008, 05:46:43 AM »

Lord Have Mercy.  You all remain in my prayers.
Logged
Starlight
Site Supporter
OC.net guru
*****
Offline Offline

Faith: Eastern Orthodox Christianity
Jurisdiction: Ukrainian Orthodox Church of USA (Ecumenical Patriarchate)
Posts: 1,537


« 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...
Logged
PeterTheAleut
The Right Blowhard Peter the Furtive of Yetts O'Muckhart
Section Moderator
Protospatharios
*****
Offline Offline

Faith: Orthodox Christian
Jurisdiction: OCA
Posts: 32,683


Lord, have mercy on the Christians in Mosul!


« Reply #16 on: February 10, 2008, 11:24:19 PM »

Lord, have mercy!
Logged
kmm
Member
***
Offline Offline

Faith: Orthodox
Jurisdiction: OCA
Posts: 105


« 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 » Logged
calligraphqueen
Elder
*****
Offline Offline

Faith: GOA
Posts: 341


« 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.
Logged
FrChris
The Rodney Dangerfield of OC.net
Site Supporter
Taxiarches
*****
Offline Offline

Faith: Orthodox Christian
Posts: 7,252


Holy Father Patrick, thank you for your help!


« Reply #19 on: February 15, 2008, 07:02:16 PM »

Again, Lord, we pray and entreat: have mercy and comfort all involved!
Logged

"As the sparrow flees from a hawk, so the man seeking humility flees from an argument". St John Climacus
ialmisry
There's nothing John of Damascus can't answer
Warned
Hypatos
*****************
Offline Offline

Faith: جامعي Arab confesssing the Orthodox Faith of the One, Holy, Catholic and Apostolic Church
Jurisdiction: Antioch (for now), but my heart belongs to Alexandria
Posts: 37,963



« 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.
Logged

Question a friend, perhaps he did not do it; but if he did anything so that he may do it no more.
A hasty quarrel kindles fire,
and urgent strife sheds blood.
If you blow on a spark, it will glow;
if you spit on it, it will be put out;
                           and both come out of your mouth
Mo the Ethio
Proud Capitalist
Elder
*****
Offline Offline

Faith: Ορθοδοξία ή θάνατος!
Posts: 453



« Reply #21 on: February 15, 2008, 10:44:38 PM »

Lord comfort thy servant
Logged

"Forgive your enemies, but never forget their names."
- John F. Kennedy (1917-1963)
jlerms
High Elder
******
Offline Offline

Faith: Eastern Orthodox
Jurisdiction: GOA
Posts: 826


O sweet Jesus, cleanse my soul.


« Reply #22 on: February 15, 2008, 11:32:07 PM »

Lord have mercy on Heather and her family.
Logged
Quinault
Protokentarchos
*********
Offline Offline

Faith: Eastern Orthodox
Jurisdiction: Antiochian
Posts: 4,518


What about frogs? I like frogs!


« Reply #23 on: May 16, 2009, 02:30:12 PM »

Any new developments?
Logged
stashko
Protokentarchos
*********
Offline Offline

Faith: ИСТОЧНИ ПРАВОСЛАВНИ СРБИН
Jurisdiction: Non Ecumenist Free Serbian Orthodox Church
Posts: 4,998


Wonderworking Sitka Icon


« Reply #24 on: May 16, 2009, 02:36:01 PM »

Lord Have Mercy!.On your Family..
Logged

ГОСПОДЕ ГОСПОДЕ ,ПОГЛЕДАЈ СА НЕБА ,ДОЂИ И ПОСЕТИ ТВОЈ ВИНОГРАД ТВОЈА ДЕСНИЦА ПОСАДИЛА АМИН АМИН.
FrChris
The Rodney Dangerfield of OC.net
Site Supporter
Taxiarches
*****
Offline Offline

Faith: Orthodox Christian
Posts: 7,252


Holy Father Patrick, thank you for your help!


« 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
Logged

"As the sparrow flees from a hawk, so the man seeking humility flees from an argument". St John Climacus
Starlight
Site Supporter
OC.net guru
*****
Offline Offline

Faith: Eastern Orthodox Christianity
Jurisdiction: Ukrainian Orthodox Church of USA (Ecumenical Patriarchate)
Posts: 1,537


« Reply #26 on: May 18, 2009, 08:42:32 PM »

Hopefully, everything is okay.

Lord, have mercy. May God help your family, dear Calligraphqueen.
Logged
Tags:
Pages: 1   Go Up
  Print  
 
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.18 | SMF © 2013, Simple Machines Valid XHTML 1.0! Valid CSS!
Page created in 0.085 seconds with 54 queries.