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4 lads mom Forum All-Star
Joined: Sept 26 2006
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Posted: Jan 31 2008 at 2:39am | IP Logged
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Hi Everyone,
I haven't been around a whole lot on the board lately. Lily's care with her trach and g-tube, plus the other medically intense kiddos I have, makes time on line not quite as frequent. I have a prayer request...today, Lily and her 6 yo brother (who also had a trach and g-tube, has the same syndrome)will both be having an MRI under a general anesthetic. My ds has a "chiari malformation" in the back of his head that they repaired by taking out part of his skull and cervical spine three years ago. According to our new neurologist, who looked at ds's MRI from last year....if it still looks as bad, he'll need extensive neuro surgery to remove more bone to make room for his brain stem, and a "patch" to expand his dura...the covering of his spinal cord. His nerves are being compressed by fluid filled cysts in his spinal cord, hopefully this would all relieve the pressure, and stave off any permanent damage to his spinal cord or brain stem. That all said, please pray for God's will here....that if it is God's will, that ds is healed. Thankfully, you would NEVER know anything is going on with ds, he is a wild thing, always jumping, running (you know, why walk when you can sprint, everywhere!)..the doctor is amazed how great he appears. It is only the MRI's that look scary.
Lily is getting an MRI given the shared syndrome with her brother, and she has an interesting "dimple" on her sacral crease.....could be nothing, or it could be spinal issues as well.
I am nervous, hauling a big container to the Font of Mercy....
Thanks all....I will update later, we see the neuro doc after the MRI's to review results, thankfully we'll know something by the time we leave.
God Bless!
ps--Lily is doing great, tries to put her trach cover in her mouth, like, a gazillion times a day, and laughs when we say, "Lily...NO!!" Oh boy...she smiles all day, is doing well developmentally, almost turning over at five months....great for all she has been through.
__________________ Mom of four brave lads and one sweet lassie
Scenes From This and That
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MaryM Board Moderator
Joined: Feb 11 2005 Location: Colorado
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Posted: Jan 31 2008 at 2:50am | IP Logged
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Praying for you and your sweet little ones as they undergo these tests and procedures.
__________________ Mary M. in Denver
Our Domestic Church
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Dawn Forum All-Star
Joined: June 12 2005 Location: Massachusetts
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Posted: Jan 31 2008 at 4:52am | IP Logged
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Praying for you dear children!
__________________ Dawn, mum to 3 boys
By Sun and Candlelight
The Nature Corner
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mariB Forum All-Star
Joined: Dec 20 2006 Location: Vermont
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Posted: Jan 31 2008 at 4:59am | IP Logged
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Praying for your children and for you!
__________________ marib-Mother to 22ds,21ds,18ds,15dd,11dd and wife to an amazing man for 23 years
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Ruth Forum All-Star
Joined: Nov 04 2006 Location: Virginia
Online Status: Offline Posts: 5007
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Posted: Jan 31 2008 at 7:45am | IP Logged
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Praying for your precious children.
__________________ Ruth
mom to 7 miracles
My family blog
Loreto Rosaries
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kingvozzo Forum All-Star
Joined: March 28 2005 Location: Maine
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Posted: Jan 31 2008 at 8:39am | IP Logged
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Praying!
__________________ Noreen
Wife to Ed
Mom to 4 great kids and 10 sweet ones in Our Lady's arms
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ladycarobe Forum Pro
Joined: Dec 31 2007
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Posted: Jan 31 2008 at 10:00am | IP Logged
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Praying for your children and for you!
__________________ best wishes,
Ladycarobe.
mom to dd6 , dd4 and dd2 and pregnant.
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joann10 Forum All-Star
Joined: Feb 10 2007
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Posted: Jan 31 2008 at 10:45am | IP Logged
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Sending prayers....
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amyable Forum All-Star
Joined: March 07 2005
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Posted: Jan 31 2008 at 11:29am | IP Logged
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Praying!
__________________ Amy
mom of 5, ages 6-16, and happy wife of
The Highly Sensitive Homeschooler
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teachingmyown Forum All-Star
Joined: Feb 20 2005 Location: Virginia
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Posted: Jan 31 2008 at 11:33am | IP Logged
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I will be praying for you all, today especially!
I was just telling my dh last night that I hadn't "seen" you around in a while and I needed to pm you to see how you all were doing.
God bless!
__________________ In Christ,
Molly
wife to Court & mom to ds '91, dd '96, ds '97, dds '99, '01, '03, '06, and dss '07 and 01/20/11
Remembering Today
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Cay Gibson Forum All-Star
Joined: July 16 2005 Location: Louisiana
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Posted: Jan 31 2008 at 11:46am | IP Logged
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We'll be praying for you and dear Lily.
__________________ Cay Gibson
"There are 49 states, then there is Louisiana." ~ Chef Emeril
wife to Mark '86
mom to 5
Cajun Cottage Under the Oaks
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4 lads mom Forum All-Star
Joined: Sept 26 2006
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Posted: Feb 01 2008 at 4:21pm | IP Logged
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Thanks so much for the prayers. Both sweethearts did fine. Miss Lily has no issues with her spine or brain....and she reigned supreme baby princess over recovery room.
Unfortuantely, older brother's news wasn't as exciting. His chiari malformation has worsened, signficantly enough to warrent surgery. We'll be scheduling that soon.
I'll update soon.
God Bless!
__________________ Mom of four brave lads and one sweet lassie
Scenes From This and That
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Angie Mc Board Moderator
Joined: Jan 31 2005 Location: Arizona
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Posted: Feb 01 2008 at 4:24pm | IP Logged
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for you...and prayers.
Good to see you here:).
Love,
__________________ Angie Mc
Maimeo to Henry! Dave's wife, mom to Mrs. Devin+Michael Pope, Aiden 20,Ian 17,John Paul 11,Catherine (heaven 6/07)
About Me
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teachingmyown Forum All-Star
Joined: Feb 20 2005 Location: Virginia
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Posted: Feb 01 2008 at 4:28pm | IP Logged
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We will continue to pray for your son and you. So glad Lily's news was good!
God bless!
__________________ In Christ,
Molly
wife to Court & mom to ds '91, dd '96, ds '97, dds '99, '01, '03, '06, and dss '07 and 01/20/11
Remembering Today
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MarilynW Forum All-Star
Joined: June 28 2006 Location: N/A
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Posted: Feb 01 2008 at 6:51pm | IP Logged
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Dear 4 lads mom
I have been thinking of you and praying for you over the last few months. I offered my rosary for you and the children yesterday. I often think of Lily as she is almost the same age as Michael. Please pm me again so we can swap photos - I lost the last one.
We will keep praying for "older brother"
I am so glad to hear from you again.
Hugs
__________________ Marilyn
Blessed with 6 gifts from God
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SeaStar Forum Moderator
Joined: Sept 16 2006
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Posted: Feb 01 2008 at 8:19pm | IP Logged
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I'll keep up the prayers for your family. Glad to hear a good Lily report!
__________________ Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
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stefoodie Forum Moderator
Joined: Feb 17 2005 Location: Ohio
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Posted: Feb 01 2008 at 8:46pm | IP Logged
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Praying!
__________________ stef
mom to five
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Bella Forum All-Star
Joined: Nov 18 2006
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Posted: Feb 01 2008 at 8:57pm | IP Logged
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I am so sorry about your DS. I will be praying for him also. Thank God Lily is doing well. God be with you all.
Christy
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Chari Forum Moderator
Joined: Jan 28 2005 Location: California
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Posted: Feb 02 2008 at 1:05am | IP Logged
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hUGS TO ALL OF YOU.......i WAS PRAYING THOUGH i HAD NOT POSTED.
Oops on the capitals.
Will keep praying for your fella!
__________________ Chari...Take Up & Read
Dh Marty 27yrs...3 lovely maidens: Anne 24, Sarah 20 & Maddelyn 17 and 3 chivalrous sons: Matthew 22, Garrett 16 & Malachy 11
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