New Niece, new to list

Children and adults with cleft lip and/or palate issues

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New Niece, new to list

Postby Linda S S » Sat Aug 04, 2007 10:18 pm

Hi, I'm new here. My niece Joy was born early this past Sunday morning with a full head of dark hair, cleft lip and something different about her palate which may not be an actual cleft. She is able to nurse and the nurse from Children's of Minneapolis team has already been to visit them. Her mother, my sister lives in another state so I've been trying to help from a distance. I put together a half page of info for her to hand to people who come to visit and to people who see them in the community.

I ordered "A Special Smile" book for her brothers ages 3 and 7 and others kids who visit.

My main question regards cost of surgery and associated appts. My sister and her husband are self-employed and do not have insurance. Also if anyone here has used the Children's Hospital of Minneapolis team and cares to comment on the experience, I'd appreciate it. I plan to offer to go up and help around surgery time, though that hasn't yet been scheduled.
Thanks,
Linda
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Postby jacksmom » Sat Aug 04, 2007 10:41 pm

Hi! I'm Allison and my son Jackson was born with an isolated cleft palate that he had repaired in April. I can not imagine what this past year would have been like if we had not had insurance. We concluded that the actual palate repair cost our insurance company around $40,000, and that doesn't include all of the other doctors we have had to see for cleft related issues. I would definitely advise your sister to look into any state funded insurance programs, or even to maybe look into getting involved with one of the Shriner's hospitals. There are several Shriner's hospitals that have excellent cleft repair programs, and it wouldn't cost them a penny. Here in Alabama we have a program called ALLKIDS for children with out insurance. Maybe her state has something like that. The Shriner's may be the way to go. She can get more info on their website. I'm pretty sure that it's www.shriners.org
Good Luck! Please let us know if you need anything else. This website has been a great resource for us the past year.
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Shriners Hospital

Postby Linda S S » Mon Aug 06, 2007 8:02 am

Hi Allison,
Thanks, I passed along the info. Looks like the Chicago Shriners is the one with a cleft team. They live about 6 hours from there. The half page of info I compiled includes a link to www.cleft.org
Linda S S
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Postby tigerlilly149 » Tue Aug 07, 2007 10:20 am

Hi! Welcome to the board and Congrats to your new niece!

I would check to see if there are any special programs from the state government that could help them out. In Michigan, we have a program called Children's Special Health Care. Its for children with disabilities. We get all of Ethan's surgeries paid for, immunizations, bottles, etc. I'd check into it. I'd call your local health department and ask.

It's so nice of you to be so helpful, even though you are far away!!! They are lucky to have you!
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Ethan Alexander
April 23, 2007
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Thanks for Shriners info

Postby Linda S S » Sat Aug 11, 2007 8:07 pm

Thanks for the Shriner's Hospital info. My sister and B-I-L plan to send in the app and see what happens. Joy has a unilateral complete right cleft lip with gum involvement but NO cleft palate. They've tentatively scheduled an appt with the nearby team while they wait to see what they hear from Shriner's Chicago.
Linda
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Postby jacksmom » Sat Aug 11, 2007 10:14 pm

Tell your sis that we wish her the best of luck! Getting in with the Shriner's can sometimes take a while unless you get referred by a doctor. Tell her to find out what plastic surgeons operate in Chicago, and call one of their offices directly to explain the situation. Sometimes that can speed things up. You're a great sister! I know you must be worried about your new niece, and being far away must be tough!
Good Luck!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Accepted at Shriners Chicago!

Postby Linda S S » Thu Aug 23, 2007 9:26 am

My sister and brother-in-law received word yesterday that they've been accepted at Shriners Chicago for cleft lip surgery for their daughter Joy! They go Sept 13th for the initial appt at which time they'll schedule the surgery, probably for October! Thanks to everyone for the helpful info. I'll keep you posted.
Linda S S
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Postby Samm » Sat Aug 25, 2007 4:34 pm

Hey
Sorry about my absentee lol

The hospital told us that Avery will get SSI cause the cleft is considered a birth defect and if he gets SSI, he will automatically get medicaid.

look into it, its worth a try
Avery BCLP
8/10/2007
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