DownSyn Forum

QuinnsMom · Posted: October 19 2009, 5:29 AM Post subject: For Quinn-Update

Please pray that we come to the right answer today when we meet with the neurologist about Quinn's tx. Thanks.

Update 10/26 - Since we were sent home from the hospital last week and couldn't start tx because of Quinn's cold - we are to return to the hospital today. Quinn still has a little cold, so I am not sure what is going to happen. She is significantly better than last week though. I am just tired. This is all very draining. What if this one gets called off and then we have to go back for a third try? I don't even want to think about that possibility, but it keeps coming into my head. I guess if we move ahead with this, Quinn will get her shot at 8pm tonight. Please pray for her. Thanks.

_________________
Karyn, Quinn's Mom -
Mother of Riley (age nine), Aidan (age six) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

naomid · Posted: October 19 2009, 6:15 AM Post subject:

sending some good thoughts.

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Naomi
Mum to Callum (DS) 3/03 and Kieran 8/04
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Momof6 · Posted: October 19 2009, 7:23 AM Post subject:

Prayers your way always.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

momlorac · Posted: October 19 2009, 7:24 AM Post subject:

Saying a prayer thar everthing works out

_________________
Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

Me-Shell · Posted: October 19 2009, 8:41 AM Post subject:

Lots of prayers and hugs for sweet Quinn.

_________________

Michelle, Fiance to Wyatt, Mom to Shane (20), Aubrey (17) and Baby Cameron DS (02/06/08 )

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." After all today is the tomorrow you worried about yesterday.

~Ben'smum~ · Posted: October 19 2009, 9:08 AM Post subject:

praying

_________________
Karen- Mum to the world's cutest baby!! Very Happy

Ben

violettesmom · Posted: October 19 2009, 9:51 AM Post subject:

Praying!

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JanetG · Posted: October 19 2009, 10:15 AM Post subject:

Karyn - Sending prayers your way today for resolution. I have to say, though, I must have missed something along the way. What is Quinn facing??

_________________
Janet (44) and Jeff (44)
Joshua (angel) '85
Sarah-age 22
Jaret-age 5
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

shea01 · Posted: October 19 2009, 6:28 PM Post subject:

Oh yes, I am praying for her.

_________________
www.1familytogether.blogspot.com

mary c · Posted: October 19 2009, 7:13 PM Post subject:

Definitely

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Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

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kzmom · Posted: October 19 2009, 8:45 PM Post subject:

Lots of good thoughts your way!

_________________
______
Kristen
Mom to Zach (Jan 2005) and Katelyn (Feb 2008 DS)

QuinnsMom · Posted: October 19 2009, 8:48 PM Post subject:

Janet, Quinn has Infantile Spasms - or very likely does.

Just a quick update - 10/19 Quinn is in the hospital. She had a video eeg today, and will have a MRI tomorrow morning. We will likely start ACTH depending on the outcome of these two things tomorrow - the neurologist says that if he has everything he needs in the morning, he hopes to get two doses in tomorrow. Everything is pointing more and more clearly to IS. At her appointment last week, he said he saw that she clearly had four of the five areas that you see, which is why he wanted to gather a little more information. Her late onset and how early we caught it seem to be factors here. We have been happy with our care. We will likely be there for a few days and it is a bummer Quinn has to be there tomorrow for her birthday.

Thank you for the prayers, and please keep praying for my beautiful baby girl.

Take care,

Karyn

_________________
Karyn, Quinn's Mom -
Mother of Riley (age nine), Aidan (age six) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

Karien · Posted: October 20 2009, 1:11 AM Post subject:

I'm sorry that you have to go through this especially on her her birthday! My God appoint a special nurse to take care of her...and you. Also pray that the medicine agrees with her . Blessings for you

_________________
Karien: happily married to Neels
Mom to Ewald (16), Eduan (13), Alvin (9) and KALLEN

JanetG · Posted: October 20 2009, 7:41 AM Post subject:

Karyn - Thanks for the update. I will definitely keep Quinn in my prayers. Hopefully they can get the spasms resolved pronto...

_________________
Janet (44) and Jeff (44)
Joshua (angel) '85
Sarah-age 22
Jaret-age 5
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

sarahmsam · Posted: October 21 2009, 3:14 PM Post subject:

I'm praying for you and your sweet Quinn, and sending hugs!!

_________________
Sarah
Mommy to Our little Rock Star Braeden
Born 4-12-07

Mom2Kimmy · Posted: October 21 2009, 6:22 PM Post subject:

Prayers for Quinn and her family.

My Kimberly had IS. She had the ACTH shot.

_________________
Lisa

QuinnsMom · Posted: October 22 2009, 5:04 AM Post subject:

Update again - this one stinks....we were sent home yesterday and she never got her shots. She developed a cough right before the initial shot, they kept us and monitored, but then determined they wouldn't do it now. So we have to go back on Monday. Very very stressful and horrible that we now have to watch the drop attacks more now and worry about them. We will get through though. Thanks so much for your prayers, please pray for Quinn for Monday, October 26 - that she is healthy enough to get this procedure.

Karyn

_________________
Karyn, Quinn's Mom -
Mother of Riley (age nine), Aidan (age six) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

JanetG · Posted: October 22 2009, 11:07 AM Post subject:

Continued prayers for Quinn.... and for mommy.

_________________
Janet (44) and Jeff (44)
Joshua (angel) '85
Sarah-age 22
Jaret-age 5
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

QuinnsMom · Posted: October 27 2009, 1:33 PM Post subject:

We have had more of a saga the last day or so, and I am not going to re-hash it here (I have no energy). If you want the whole sad tale you can see it on my blog listed in my siggie.

But...

I am happy to finally report something happened...after getting the runaround in the am (the insurance company said that the hospital didn't give them the correct code for the tx and the hospital blamed the insurance company), we finally were approved and got here and Quinn received her first shot of ACTH. She did pretty well with the whole experience. Hopefully we will get the meds sent to our house without a hitch so we can go home on Thursday.

Please pray that this does the trick for Quinny in eliminating those seizures.

Thanks.

_________________
Karyn, Quinn's Mom -
Mother of Riley (age nine), Aidan (age six) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

JanetG · Posted: October 27 2009, 1:54 PM Post subject:

Continued prayers, Karyn... I will have to check your blog when I get home from work. Hopefully the meds work and you guys can get home soon... HUGS!

_________________
Janet (44) and Jeff (44)
Joshua (angel) '85
Sarah-age 22
Jaret-age 5
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

Me-Shell · Posted: October 27 2009, 2:42 PM Post subject:

Lots of warm wishes, prayers and hugs heading your way!

_________________

Michelle, Fiance to Wyatt, Mom to Shane (20), Aubrey (17) and Baby Cameron DS (02/06/08 )

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." After all today is the tomorrow you worried about yesterday.

AliMama · Posted: October 30 2009, 12:30 AM Post subject:

Sending more prayers and good thoughts your way--hugs for you and Quinn--

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-09

Annieo · Posted: October 30 2009, 7:27 AM Post subject:

I'm so sorry things have been so rough. Prayers that there are no more delays and Quinn responds to the treatment.

_________________

"There's a release in knowing the truth no matter how anguishing it is. You come finally to the irreducible thing, and there's nothing left to do but pick it up and hold it. Then, at least, you can enter the severe mercy of acceptance." Sue Monk Kidd

"Never doubt that a small group of thoughtful people can make a difference, in fact it is the only thing that ever has." Margaret Meade

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul and Alice

www.caringbridge.org/visit/johnbremer

Momof6 · Posted: October 30 2009, 7:35 AM Post subject:

Prayers still you way. Think of Quinn.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin