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General Forums => Prayer Forum => Topic started by: calligraphqueen on February 09, 2008, 04:01:00 PM

Title: nearly lost our daughter this wee
Post by: calligraphqueen 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
Title: Re: nearly lost our daughter this wee
Post by: FrChris on February 09, 2008, 04:03:29 PM
May the comforting hand of the Lord visit your entire family!
Title: Re: nearly lost our daughter this wee
Post by: Heorhij on February 09, 2008, 04:09:32 PM
LOrd, have mercy on your handmaiden Rebecca, on her daughter Heather and on her entire family!
Title: Re: nearly lost our daughter this wee
Post by: Veniamin on February 09, 2008, 04:32:30 PM
Lord have mercy!
Title: Re: nearly lost our daughter this wee
Post by: Entscheidungsproblem on February 09, 2008, 05:01:28 PM
Lord, have mercy.
Title: Re: nearly lost our daughter this wee
Post by: Jakub on February 09, 2008, 05:49:15 PM
Prayers...

james
Title: Re: nearly lost our daughter this wee
Post by: Salpy on February 09, 2008, 08:35:47 PM
Lord have mercy!
Title: Re: nearly lost our daughter this wee
Post by: TinaG 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.
Title: Re: nearly lost our daughter this wee
Post by: jlerms 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
Title: Re: nearly lost our daughter this wee
Post by: ozgeorge on February 09, 2008, 09:54:45 PM
Lord have mercy on the works of Your Hand.
Title: Re: nearly lost our daughter this wee
Post by: Fr. George on February 09, 2008, 10:39:58 PM
Lord, have mercy, grant strength, peace, and health.
Title: Re: nearly lost our daughter this wee
Post by: ComingHome on February 09, 2008, 10:53:16 PM
Lord, have mercy.
Title: Re: nearly lost our daughter this wee
Post by: Αριστοκλής on February 10, 2008, 04:41:25 AM
Lord have mercy!
Title: Re: nearly lost our daughter this wee
Post by: Riddikulus on February 10, 2008, 05:05:34 AM
Lord, have mercy on the work of your hands.
Title: Re: nearly lost our daughter this wee
Post by: Psalti Boy on February 10, 2008, 05:46:43 AM
Lord Have Mercy.  You all remain in my prayers.
Title: Re: nearly lost our daughter this wee
Post by: Starlight on February 10, 2008, 10:28:36 PM
Rebecca, you are a heroic mother. I admire of your courage.

My prayers for the family...
Title: Re: nearly lost our daughter this wee
Post by: PeterTheAleut on February 10, 2008, 11:24:19 PM
Lord, have mercy!
Title: Re: nearly lost our daughter this wee
Post by: kmm 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...
Title: Re: nearly lost our daughter this wee
Post by: calligraphqueen 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.
Title: Re: nearly lost our daughter this wee
Post by: FrChris on February 15, 2008, 07:02:16 PM
Again, Lord, we pray and entreat: have mercy and comfort all involved!
Title: Re: nearly lost our daughter this wee
Post by: ialmisry 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.
Title: Re: nearly lost our daughter this wee
Post by: Mo the Ethio on February 15, 2008, 10:44:38 PM
Lord comfort thy servant
Title: Re: nearly lost our daughter this wee
Post by: jlerms on February 15, 2008, 11:32:07 PM
Lord have mercy on Heather and her family.
Title: Re: nearly lost our daughter this wee
Post by: Quinault on May 16, 2009, 02:30:12 PM
Any new developments?
Title: Re: nearly lost our daughter this wee
Post by: stashko on May 16, 2009, 02:36:01 PM
Lord Have Mercy!.On your Family..(http://forums.catholic.com/images/smilies/religious/crosseo.gif)
Title: Re: nearly lost our daughter this wee
Post by: FrChris 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
Title: Re: nearly lost our daughter this wee
Post by: Starlight on May 18, 2009, 08:42:32 PM
Hopefully, everything is okay.

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