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Thank You RON....Update on Sophia..as requested
For adding my daughters website as a banner on your site!!!!!!!
Thank you everyone, the riders are doing great, they are almost in CA and will end at the Reeve Irvine Institute where the stem cell research is being done to cure this disease!!!!!
Update on my daughter:
She is almost 8 months and thank God has only been hospitailized once (for her G tube surgery) that was back in July I remember giving her her last bottle knowing that after the surgery I would never be able to give her a bottle again, it was a special night for us  since the surgery she has no movement she can move her two fingers(thumb and pointer) but that is it, she still smiles which brings me joy everyday and I pray she wont lose that!!!! she giggles also when I kiss her belly and when her daddy comes in the room she lights up like a firefly (totally daddys girl) she sleeps with us everynight and we love waking up to her little face.....we cannot hold Sophia anymore since losing her swallow she will choke on her saliva unless she is lying flat, but after talking to other SMA parents they said she may learn to spit it out herself and stop trying to swallow and maybe we can hold her again,,,,she loves watching elmo and tinkerbell and Monsters Inc, she loves loves loves Mike Wizowski...LOLOL....I tel her she is going to marry a one eyed man..LOL....she wears a bi-pap machine when she sleeps to help her breath at night, I just keep praying everyday that she will be cured I ask God not to take her from me,.....Thank you all for your prayers and your generosity and for asking about my angel
Message edited 10/21/2009 8:18:51 AM.
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Posted 10/20/09 12:55 PM  |
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kahlua716
3 Girls for Me!
Member since 8/07 12475 total posts
Name:
Keri
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Re: Thank You RON
I noticed it this morning! I think it's awesome 
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| Posted 10/20/09 1:03 PM |
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neener1211
:-)
Member since 4/07 22952 total posts
Name:
J
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Re: Thank You RON
Posted by kahlua716
I noticed it this morning! I think it's awesome
So did I
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| Posted 10/20/09 1:05 PM |
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MsSissy
xoxoxo
Member since 3/07 39159 total posts
Name:
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Re: Thank You RON
That's GREAT!
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| Posted 10/20/09 1:36 PM |
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Daisy32
Mommy
Member since 2/08 8081 total posts
Name:
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Re: Thank You RON
Thats great
God bless her!!!
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| Posted 10/20/09 1:54 PM |
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avamamma
My Girl
Member since 7/06 3395 total posts
Name:
Tara
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Re: Thank You RON
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| Posted 10/20/09 2:12 PM |
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CathyB
Member since 5/05 19403 total posts
Name:
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Re: Thank You RON
I didn't realize this was your daughter. How are the guys doing on their ride?
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| Posted 10/20/09 2:19 PM |
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XcalystaX
Sooo Sleep Deprived....
Member since 7/06 2742 total posts
Name:
S
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Re: Thank You RON
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| Posted 10/20/09 2:55 PM |
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MST9106
My life:)
Member since 6/06 9589 total posts
Name:
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Re: Thank You RON
I was going to start a thread about you today on the Parenting board! Can you give us an update on how Sophia and you guys are doing? You're always in our thoughts and prayers!
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| Posted 10/20/09 3:08 PM |
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MommyofG
just the girls
Member since 5/05 9461 total posts
Name:
Janice
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Re: Thank You RON
Posted by MST9106
I was going to start a thread about you today on the Parenting board! Can you give us an update on how Sophia and you guys are doing? You're always in our thoughts and prayers!
I was going to ask the same. does she have any movement? any signs of improvement?
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| Posted 10/20/09 3:11 PM |
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NW2006
LIF Adolescent
Member since 7/06 535 total posts
Name:
Nicole
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Re: Thank You RON
I just read your family's story and am so touched by your love and strength. I will be donating, and praying and keeping my thoughts on your beautiful daughter.
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| Posted 10/20/09 3:13 PM |
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KPsquared
Member since 5/05 4663 total posts
Name:
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Re: Thank You RON
The banners look great! Praying for you and your daughter!
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| Posted 10/20/09 10:21 PM |
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springchick
make a wish
Member since 5/08 3566 total posts
Name:
justask
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Re: Thank You RON
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| Posted 10/20/09 10:46 PM |
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InShock
life is good
Member since 10/06 9258 total posts
Name:
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Re: Thank You RON
I've been meaning to donate forever, and the banner just reminded me of that. I just finally donated. You and your sweet Sophia are in my prayers. 
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| Posted 10/20/09 10:58 PM |
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Re: Thank You RON....Update on Sophia..as requested
bump for update
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| Posted 10/21/09 8:22 AM |
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KGools
Happy
Member since 9/06 9532 total posts
Name:
Kim
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Re: Thank You RON....Update on Sophia..as requested
Many prayers for your beautiful little girl. And prayers for you and your DH as well.
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| Posted 10/21/09 8:24 AM |
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headoverheels
s'il vous plaît
Member since 6/07 42079 total posts
Name:
LB
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Re: Thank You RON....Update on Sophia..as requested
thank you for the update i am praying for a miracle for your little girl as well!!
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| Posted 10/21/09 8:34 AM |
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LisaW
Time for me to FLY!
Member since 5/05 13199 total posts
Name:
Did I ever tell you that I hate people?
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Re: Thank You RON....Update on Sophia..as requested
praying for a cure! 
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| Posted 10/21/09 8:41 AM |
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Little-J-Mommy
I'm a Big Brother
Member since 5/06 8041 total posts
Name:
D
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Re: Thank You RON....Update on Sophia..as requested
Posted by headoverheels
thank you for the update i am praying for a miracle for your little girl as well!!
same here. she's gorgeous
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| Posted 10/21/09 8:44 AM |
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mrswask
Pookie Love
Member since 5/05 20229 total posts
Name:
Michal
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Re: Thank You RON....Update on Sophia..as requested
Many hugs Your family's strength is amazing.
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| Posted 10/21/09 8:45 AM |
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Daisy32
Mommy
Member since 2/08 8081 total posts
Name:
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Re: Thank You RON....Update on Sophia..as requested
she's the most beautiful baby I've ever seen
She's lucky to have you and your DH as parents....its obvious what amazing parents you both are God bless your family.
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| Posted 10/21/09 8:53 AM |
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JBmommy
LIF Infant
Member since 8/09 252 total posts
Name:
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Re: Thank You RON....Update on Sophia..as requested
I am praying for a cure.
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| Posted 10/21/09 8:55 AM |
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JoesWife628
Our family is complete :)
Member since 8/08 3934 total posts
Name:
Me
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Re: Thank You RON....Update on Sophia..as requested
for your beautiful baby for a cure
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| Posted 10/21/09 8:58 AM |
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Re: Thank You RON....Update on Sophia..as requested
Those are absolutely precious moments/stories that you have with her. I hope you have many, many more.
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| Posted 10/21/09 9:02 AM |
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MrsFab
this is bliss.......
Member since 10/08 1234 total posts
Name:
Mb
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Re: Thank You RON....Update on Sophia..as requested
my prayers are with you, your daughter and husband!
I gave a donation- I wish it could be more
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| Posted 10/21/09 9:08 AM |
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