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Thread: 2008 CHERUBS Conference Itinerary

  1. #1

    2008 CHERUBS Conference Itinerary

    THURSDAY, JULY 24th


    3:00 pm - Check in

    7:00 pm - CHERUBS Pizza Party Meet & Greet - Join us for introductions!



    FRIDAY, JULY 25th


    8:00 am - Welcome Speech by Dawn


    8:30 am - 10:00 - (Choice of) Round Table Discussions

    "Dealing With Grief" or
    "Dealing With Feeding Issues"


    10:00 am -12:00 pm - Guest Speakers Meaghan Russell and Dr. Mauro Longoni (MassGeneral CDH Clinic, Boston, MA) will discuss Genetic Research Into CDH


    12:00 pm - 1:30 pm – Lunch Break. Lunch will not be provided.


    1:30 pm - 2:30 pm - (Choice of) Round Table Discussions


    "Dealing with Marital Problems" or
    "Dealing with Individualized Education Plans (IEPs)"


    2:30 pm - 4:00 pm - Guest Speaker Pediatric Surgeon, Dr. Priscilla Chiu (Sick Childrens, Toronto, Canada) will discuss surgical repair of Congenital Diaphragmatic Hernia

    4:00 pm - 5:30 pm - Guest Speaker & CDH Mom, Brenda Slavin, RN will discuss the Intensive Care Unit and Nursing Care

    5:30 pm - Open Group Discussion



    SATURDAY, JULY 26th - Relaxed Conference at Pullen Park


    9:00 am - 10 am - (Choice of) Round Table Discussions

    "Having babies after the lose of a cherub" or
    "Having babies while dealing with CDH"


    10 A.M--11 A.M.-- (Choice of) Round Table Discussions

    "Learning how to deal with family and friends" or
    "Learning how to work as a team with medical professionals"

    11 A.M.--12 Noon-- (Choice of) Round Table Discussions


    "Helping siblings understand CDH" or
    "Finding ways to make CHERUBS better"


    12 Noon - Families enjoy the park!




    Saturday, July 26th, 7:00 pm - 12 midnight - CHERUBS Angel Ball

    Monday, July 28th - CHERUBS Golf Tournament
    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.

  2. #2
    Sounds great!

    I don't know if this is published publicly, but on Saturday from 9-10
    "Having babies after the lose of a cherub"
    should be
    "Having babies after the LOSS of a cherub"
    not in all caps, but I just wanted to do that so you could see what word was changed easily.

    I know Steve and I are excited!
    Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>

  3. #3
    Thank you for catching that, Amy!
    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.

  4. #4
    Dawn I guess I will let the hotel know that we will not check in until REALLY late Thrusday night. We won't even leave SC until after 7pm when Jeff gets home from work. He is excited too. He has been asking if our reservations are confirmed, did I buy ball tickets, what are we doing, who will be there(like he knows any of you), will there be any international attendees,ect? He is really quite cute about the whole thing but he would never let on. I know he is curious. He has been so supportive of my activities here. I think he knows how great you all and CHERUBS are. I talk about you and your children so much that he probably will already know who you are!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  5. #5
    I am excited for Steve to meet all of your husbands! I hoe they can connect.
    Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>

  6. #6
    oops HOPE! LOL...
    Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>

  7. #7
    Senior Member
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    Lynne-I was told by the hotel they are their 24/7 and will keep your room until 7am the following morning.
    Corin New England State Rep [img]http://i171.photobucket.com/albums/u312/GabrielMommy1118/1-3.jpg[/img] [url]www.gabriel-nava.virtual-memorials.com[/url] Gabriels website [url]http://www.youtube.com/watch?v=N66S-vt5sI8[/url] Gabriels Video [url]http://corinscrazylife.blogspot.com/[/url] My Blog [url]http://newenglandcherubs.wordpress.com[/url] New England Blog

  8. #8
    Thanks Corin, I won't sweat it then!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  9. #9
    All sounds great! I wish I could be there with you! Please, please know that I am right there with my heart, and remember to make a toast for me
    Fer Mom to Ana (29-11-2001) Mom to Juan Pablo (1-6-2007) born with a right sided diaphragm eventration- a rare type of CDH- severe reflux and speech delayed with signs of autism Juan Pablo- a Tribute to Life at http://es.youtube.com/watch?v=DYQAqMoTaiQ Our family blog at www.arcephoto.blogspot.com (if you want to visit- email me at maferarceamare@gmail.com so I can send you an invite)

  10. #10
    We will Fer. We wish you were coming too.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

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