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4 lads mom
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HI Friends,
Lily had her first post op visit...and she has a hole in her new palate. The surgeon said not to despair, that this could close, and it might not go all the way through all of the layers......it looks likely that it is all the way through to the nose, from what I see....since the drainage out her nose, (sorry for graphic medical yuck), is now coming out of her mouth, hummm, probably a straight shot through that handy little hole. To make sure we have extra fun....the surgeon then said she has to wear the arm restraints for FOUR more weeks, not two, to try and ward off completely destroying what palate she has. This too shall pass...albeit, slowly...but pass it will.
Thanks for your prayers, keep them coming! Also, Lily's big brother who shares the same syndrome, has a nasal endoscopy next week....they will be scoping him through his nose, just to the back of his throat, (which hasn't reassured him at all), and videotaping his palate as he talks, to see the extent of his palate issues. Poor guy, the whole thing with Lily has rattled his cage, he was scared when he saw her post op, and first thing out of his mouth was, "Is THAT what I looked like after my palate repairs?" Followed, quickly by, "I am NOT having any more surgeries!!" He is such a sweet boy....pray for his anxiety!!!
God Bless!! You all are in my prayers!!!!
UPDATE--It is late, but I wanted to let you know your prayers were answered in a big way.....the test my ds had today was not bad AT ALL, he tolerated it without even crying...was very brave..and it looks like his palate is much better than we anticipated. He will likely need more surgery on his jaw at some point, but it isn't in the near future, and neither is a palate repair...just a lot of speech therapy.....whew!!
Lily did fine, her hearing is normal now with her tubes  . I had a long talk with her ENT about the whole decannulation process timeline...(getting her trach out), and the first thing is surgery in Jan. to take out the scar tissue blocking her airway above the actual trach site. The whole process of decannulation might be a very long one, and she could end up needing her jaw lengthened like her big brother did......hope not, but it is a real possibility.
God Bless you....I am feeling very thankful tonight!!!! We have good docs, and a plan.....
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Mom of four brave lads and one sweet lassie
Scenes From This and That
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missionfamily
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Oh, we are praying for Lily and your whole sweet family.
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Colleen
dh Greg
mom to Quinn,Gabriel, Brendan,Evan, Kolbe, and sweet St. Bryce
Footprints on the Fridge
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nissag
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Prayers continue. How miserable to have to have restraints. Can't be much fun for you, either, Mama.
Blessings,
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Nissa
Deacon's wife, mother of eleven, farmer, teacher, creator, cook.
At Home With the Gadbois Family
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cathhomeschool
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Texas Bluebonnets
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| Posted: Nov 07 2008 at 8:32am | IP Logged
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I'm so sorry! Poor things! It's so stressful to "know what's coming." :-(
Praying for strength for all of you, for a quick recovery for Lily, for peace and courage for brother. May the Holy Spirit send you all the graces you need to fly through the coming weeks.
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Janette (4 boys - 22, 21, 15, 14)
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Booksnbabes
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Praying for both children (and you and dh!) as you continue your struggles! Poor babies! 
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Wife to wonderful DH, mom to SIX beautiful gifts from God!
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teachingmyown
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Oh Mama! Lots of prayers and hugs coming for you and your babies! What a cross for your family to shoulder!
Lily and her big brother are at the top of my girls' prayer intentions every night.
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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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Lisa R
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You come to my mind every single day. We are most definitely still praying. Thanks for the update. Now we can add some specifics to our request.
God bless you all.
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God Bless!
Lisa, married to my best friend, Ray and loving my blessings Joshua (17)and Jacob(15), Hannah(7) and Rachel (5)!Holy Family Academy
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Carole N.
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Praying for you all!
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 Carole ... in Wales
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Jen L.
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Praying here
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Jen
dh Klete,ds (8/95),dd (12/97), dd (11/00), and ^2^ in heaven
"...the best state in which to glorify God is our actual state; the best grace is that of the moment..." St. Peter Eymard
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Philothea
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Praying!
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wifemommy
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Praying
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Mackfam
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We continue to pray for your beautiful family - what trials you all are being offered. Your acceptance is a thing of beauty. I pray for your mommy heart - mine breaks when my children must suffer.
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Jen Mackintosh
Wife to Rob, mom to dd 19, ds 16, ds 11, dd 8, and dd 3
Wildflowers and Marbles
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Willa
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I'm praying, 4Lads and Lily's mom. Ditto what Jennifer said.
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AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
Take Up and Read
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LisaR
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Praying for Lily, and your entire family!! May the weeks pass quickly and may significant healing occur!
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Lisa
dh Tim '92
Joseph 17
Paul 14
Thomas 11
Dominic 8
Maria Gianna 5
Isaac Vincent 9/21/10! and...
many little saints in heaven!
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aussieannie
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Praying for you all, you are one awesome mum!
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jdostalik
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Many, many prayers for Lily, her big brother and for you all during this time. You are a beautiful witness to God's love mirrored through a mother's heart. Much love to you!
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God Bless,
Jennifer in TX
wife to Bill, mom to six here on earth and eight in heaven.
Let the Little Ones Come
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4 lads mom
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| Posted: Nov 11 2008 at 10:17pm | IP Logged
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Update at top.....thanks!!
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Mom of four brave lads and one sweet lassie
Scenes From This and That
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hylabrook1
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Giving thanks with you and praying for continued healing.
Peace,
Nancy
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jdostalik
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Thanks be to God for this good news. We are continuing to pray.
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God Bless,
Jennifer in TX
wife to Bill, mom to six here on earth and eight in heaven.
Let the Little Ones Come
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teachingmyown
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So good to hear good news about your little ones! And so good to hear the joy and peace in your "voice"! You are an incredible witness to the rest of us.
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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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4Real Forums : We Pray to the Lord
Topic: Lily's post op and UPDATE
