Luanne and baby Faith update

iVillage Member
Registered: 08-20-2004
Luanne and baby Faith update
2
Thu, 06-29-2006 - 12:30am
Hey Jan and everyone! I don't know if anyone but Jan will remember me but I wanted to drop in and share an update with everyone. I have a DD 15 months old named Faith who was born with an encephalocele. You can check out her website for more details and her story at http://luslilangel.tripod.com/ Her PT and OT is going great and she has made a lot of improvement though she is still VERY delayed in ALL areas. She turns her head now with much ease and pushes up on her arms better. She tries to scoot on her tummy if you put your hands against her feet but she forgets to pick up her arms and ends up doing a sort of GI-Joe scoot on her face! lol She absolutlely LOVES to stand and will try to hardest to get my hands off of her to try alone...unfortunately having the equivalent of two heads in weight throws her off balance terribly so mommy can't let go no matter how mad she gets! Her vocalization has increased so much and in playing one day she said "mama" though she's never said it since! She turns her head to noises and voices and seems to know when a stranger is holding her. She still only cries when she sneezes but occasionally will cry out suddenly and stop...it's so rare that her daddy and I can't help but giggle because her cry is adorable! I got a phone call from her neurosurgeon at Baptist Hospital in Winston-Salem and he and the plastic/reconstruction surgeon have met and discussed her case and are ready to talk to us about what they have decided as far as trying to rebuild her skull so that they can encase the entire brain and remove the encephalocele. That appointment is on July 14. PLEASE keep us in your prayers as this is the appointment we have been waiting for because originally they never planned on such a surgery in Florida! This could really change things for her but at the same time it's a MAJOR surgery and it terrifies me beyond belief. I'm happy with her the way she is and sometimes wonder if it's worth all the risk involved! OH also.....Her daddy and I got married this past saturday!!!! We are going on our honeymoon July 1st-5th. Anyway, I know Jan has asked about her and e-mailed me in the past so I wanted to drop in and say hello and ask for P&PT for her next month! Here is a link to see picks of the wedding!!!
http://pg.photos.yahoo.com/ph/miraclefaith_2005/album?.dir=b8dc&.src=ph&store=&prodid=&.done=http%3a//photos.yahoo.com/ph//my_photos
Hope everyone is doing well!!!
Luanne, Chris and Faith

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iVillage Member
Registered: 03-26-2003
Thu, 06-29-2006 - 3:12am
Hi,
I didn't respond to many of your posts, but I do remember you. I'm glad that things are looking up. I will keep you both in my prayers and thoughts.

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iVillage Member
Registered: 04-04-2005
Thu, 06-29-2006 - 10:55am

luanne,


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