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Thread: 2011 CDH Conference in June in Orlando!

  1. 01-18-2011, 02:13 PM #51
    Dawn Torrence Ireland
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    Yes, for 2011 we will be in Orlando again. June 23-26th. http://www.cdhconference.org

    2012 hasn't been decided yet. We're open to options if they meet all the requirements and we have help in the area. 2012 planning will start in August.

    We hope to see as many families in Orlando as possible!!! We will get discounted Disney tickets (more info posted soon), the hotel is great and even has a waterpark for the kids and tons of stuff for teens to do too. We were really happy with them last year and look forward to being in Orlando again.

    We need volunteers for babysitting so talk to Karla Holt if you can help with that!

    Also, parents of survivors... ask your child's therapists or social workers about grants to attend medical conferences. Often, they can find grants to help cover expenses. But you need to start doing that NOW!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.
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  2. 01-18-2011, 04:49 PM #52
    KarlaHolt
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    Trying to find a way to be there but not sure yet..

    Dave and I might come without the kids... Brooke might not forgive us!

    Would love to get an idea of how many parents need sitters so I can drum up some ideas. Seems like last year I was the only one who needed it.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url
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  3. 01-18-2011, 08:12 PM #53
    JenniferTenney
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    Karla-
    I don't think I need a sitter since I will be staying with my sister in Orlando and am going to try to get my mom to come with me, but I may be able to get my mom and/or sister to do the babysitting on the Saturday morning sessions (my sister will be working on Friday). Let me ask them and I will get back to you!
    Mom to Dakota Tenney- born 12-25-08 (RCDH). Diagnosed at 29 weeks. Born 7 weeks and 2 days early (32 weeks and 5 days). She is my Christmas gift and I am never giving her back. ECMO three days. Surgery on Day 13. Home on cannula oxygen 2-25-2009. Off oxygen 3-31-2009. No feeding tube yet *knock on wood*. Hard to feed and still a skinny little girl- but we are working on it!
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  4. 01-19-2011, 12:15 AM #54
    PamelaMcHan
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    Like Tracy, everything surrounding me is high altitude. But I would love to help out with whatever I can. Orlando is just too far for us. We could never afford to bring everyone. Maybe some year just Cameron and Sawyer and I could make it, but we're talking way in the future. Las Vegas? (just throwing it out there)
    Boise sits at just over 2,700 ft. It has a children's hospital, airport, zoo, water park, and an assortment of other activities. I know it is small compared to most cities, but its just a thought.
    Pamela-mom to Sawyer 6 1/2 yrs. LCDH repair @ 5 days- PPH-resolved-oscillating vent 12 days- reg vent 7. Home @ 30 days- no O2- breastfeeding- doing much better than expected. Dx with spastic di/quadriplegia cerebral palsy @ 17 months. Has reherniated 2x's. 1st-hiatal hernia (repaired @ 25months) 2nd-paraesophageal hiatal hernia (current) needs surgery to repair- but we are waiting on it!! Has 7 bros and sisters who adore him. Nonverbal- somewhat ambulatory. Very naughty- but that's the fight in him shining through!!!!
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  5. 01-19-2011, 11:29 PM #55
    jjos2009
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    Seattle is a good place. I live about 3 hours from there and we delivered Axel in seattle and had him transferred to Childrens. They have a NICU/PICU. We also have the Aquarium and Woodland Park ZOO, both within 7 miles of the hospital we also have PIKE PLACE MARKET. Hotels are resonably priced around 70 dollars and close to SEATAC airport.
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  6. 01-21-2011, 10:29 AM #56
    Crystal Benitez
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    How old do babysitters have to be?
    My little Angel- Scarlett Ray Benitez was born July 19th 2008. She was born completely blue and not breathing at 38 weeks- she was 5 pounds and 12 ounces. She was diagnosed about an hour after birth with left sided CDH and she had a successful surgery two days later. The 19 days she was in the hospital are a blurr to me now. The doctors told us she did amazingly well for having CDH. She has acid refulx- severe asthma- and a few developmental delays and with all of that- to me and my husband she is perfect!! She is the happiest baby I have ever known (and no I am not biased ). Even when she is severly sick she still smiles. I thank God every day for giving me her!!
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  7. 01-21-2011, 10:31 AM #57
    Crystal Benitez
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    Also I am trying to get approved for a grant I was wondering if anyone could tell me cherubs 501c number?
    My little Angel- Scarlett Ray Benitez was born July 19th 2008. She was born completely blue and not breathing at 38 weeks- she was 5 pounds and 12 ounces. She was diagnosed about an hour after birth with left sided CDH and she had a successful surgery two days later. The 19 days she was in the hospital are a blurr to me now. The doctors told us she did amazingly well for having CDH. She has acid refulx- severe asthma- and a few developmental delays and with all of that- to me and my husband she is perfect!! She is the happiest baby I have ever known (and no I am not biased ). Even when she is severly sick she still smiles. I thank God every day for giving me her!!
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  8. 01-21-2011, 02:31 PM #58
    KarlaHolt
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    I don't know if CHERUBS has any rules on the age of babysitters, Dawn?

    But I would say 18 or older.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url
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  9. 01-24-2011, 11:02 PM #59
    deAnnStrotherMcGilberry
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    Yeah, just checked the dates on my calendar and that is one of the few weekends this yr that Chambers does not have a go kart race...so we are planning on coming agian this year !!!! so excited !
    Son Claude born with no diaphram- diagnoised in utero @ 20 weeks. passed away after 10 days. Celie diagnoised after birth- did high risk clinic ultra sound and saw complete diaphram @ approx. 28 weeks. Had Chambers who was a healthy baby inbetween Claude and Celie so saw no need to have another ultra sound. Celies repair at 3 days home in 1 month. Has one full lung and one quarter of the other. She will be 3 Nov. 21 and has no other complications. So I have been on both ends of the spectrum with CDH.
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  10. 01-24-2011, 11:03 PM #60
    deAnnStrotherMcGilberry
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    Yeah, just checked the dates on my calendar and that is one of the few weekends this yr that Chambers does not have a go kart race...so we are planning on coming agian this year !!!! so excited !
    Son Claude born with no diaphram- diagnoised in utero @ 20 weeks. passed away after 10 days. Celie diagnoised after birth- did high risk clinic ultra sound and saw complete diaphram @ approx. 28 weeks. Had Chambers who was a healthy baby inbetween Claude and Celie so saw no need to have another ultra sound. Celies repair at 3 days home in 1 month. Has one full lung and one quarter of the other. She will be 3 Nov. 21 and has no other complications. So I have been on both ends of the spectrum with CDH.
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