Things I learned at the Conference

[JenniferTenney]

I just wanted to say thank you, first, to Dawn and everyone else who planned the conference, for a great time. It was informative and comforting. I wanted to start a thread on the things we learned, so I will start:

1. DHREAMS and Massachusetts are looking for samples of blood from cherubs, and parents to try to find a common gene which may cause CDH. It may not be one gene, actually, but probably several different genes. So far they have found genes (associated with abnormalities) which are linked with CDH in about 10% of the cases. They have no explanation yet for 90% of the cases of CDH.
2. The scientist believe that CDH will most likely be found to be genetic and not caused by environmental factors. But by genetic, they don't mean necessarily, passing from mother or father to baby, but it could also mean that aberrations in the genes happen spontaneously.
3. I discovered that there is a free program in every state called Early Intervention. You have to seek them out, but they will then send someone to evaluate your child in your home. If you qualify, they will send free therapy to your home. I have just started this process.
4. I discovered that the parents of cherubs are even more kind in person and that it truly helps to share experiences with people who have been through what you have and understand and relate to every word you say.

Again, thanks!

[JenniferTenney]

p.s. please correct me if I misunderstood or mistated any of the genetic stuff =)

[Crystal Benitez]

Thanks for that information Jennifer. I was so sad when I was unable to attend the conference. I had heard about early intervention through cherubs but I did not know what it was. I will definately be looking into that. Thanks again.

[KarlaHolt]

I'm sad I missed the genetic stuff on the first day...I spent two hours at Walgreens that morning having Braden's ear checked and waiting for his antibiotic (NOT FUN!).

We did give blood for the study and will get Braden's sample from the pediatrician next week.

CDH families are AMAZING!

Jennifer, I hope early intervention works out. Let us know what you find out! Dakota is adorable!

Dave really wants to tackle a big fundraiser like a golf tournament so I'm letting him take to lead on that....I think he needs / wants to feel important as a CDH DAD....

[KarlaHolt]

THANK YOU DAWN AND BARB AND EVERYONE WHO SPONSORED THE CONFERENCE FOR ALL THAT YOU DO!

Count me in to work on the babysitting for next year....

[Dawn Torrence Ireland]

Love this thread!!! Thank you, Jennifer!!!

Karla, THANK YOU for helping with next year's conference! Tell Dave, Craig planning a golf tournament here too so we expect to see you guys here in NC too. We can work on both tournaments together or help with whatever he wants to do! Love to see the dads doing events!!!!!!

What I learned at the conference....

- That there are cases of CDH where the patients' DNA in their blood is different that in their diaphragms. That floored me!!!! Only a few cases (2 or 3) but that finding is HUGE!
- I learned a lot about DHREAMS and Baylor's programs and was thrilled to meet their coordinators
- I learned soooooo, sooooo much at the other 2 conferences and will share it with everyone soon!
- I learned that everyone wants to do SOMETHING to help and honor their cherubs, they just aren't sure how to do it. Hopefully the brochures will help!
- I learned a long list of things to do differently next year (good ideas! Thanks Barb, Karla, Karen and Erin!)
- I learned that I should be ashamed of myself for not working out after I saw Karen looking so great in a bikini after 5 kids! I have no excuse to be out of shape now. You are great motivation, Karen, thank you!!!
- I learned that there is definitely a generation gap with cherubs. Those born recently and those born 7+ years ago - the doctors have changed what they tell parents and how they deal with families. But not so much how they deal with CDH!
- I learned that doctors regret telling parents about HLR because we all know that lung function isn't the only important thing with these kids!
- I learned that surgeons stress over every little thing with these kids just as much as us parents do and they stress over helping families too.
- I learned that Mauro can rock a Hawaiian shirt.
- I learned about each family that attended and heard their stories and met their cherubs.
- I learned that CDH parents are the most compassionate, kind and supportive people I have ever met. Everyone was so wonderful to each other and such a big family.
- I learned that I am so blessed to be a part of such a wonderful group.

[NicolleColvin]

Thank you for starting this thread! I wanted so badly to be there, but you know if I went I would have had BG on the airplane or some place in public What wonderful info you learned!! Where is next years???

[Crystal Benitez]

I also was soo sad that I couldn't go!! I will definately try as hard as I can to go next year. I can't wait!

[Barbara and KevinWagner]

What an AWESOME thread!!!

Jennifer & Karla.......You are so welcome! We love these conferences!! I wish that I could have gotten more time with all the families there! Karla I am so so so looking forward to working on the babysitting with you next year. You think of things that we do not!! I am so sorry that Braden was so sick this conference! We LOVE spending time with you and your family......Braden is such a hoot and just plain cracks me up!!! I was soooo glad that Kevin got to meet EVERYONE!! He has not been to a CHERUBS function in 10 years.....but he is already planning for next year! Thank you for making him comfortable!!

I am not sure why this surprises me still but EVERY year I learn how loving, compassionate and FUN families we have here at CHERUBS!!!

Dawn .....u r right!! Mauro CAN rock that shirt!!!

[StephBurton]

Hey Y'all,

First of all, Thank you Dawn and everyone else that was involved in the organization of the conference.

Most of the things we learned were posted, in addition to a few tricks with feeding that we can try with Caleb. We also had a GREAT time at the round table discussions, because most of all, we learned that we are not alone in our experiences with Caleb and the difficulties we are experiencing. We were told by many of you to not stress about weight, and that was a GREAT relief. We dread putting Caleb on a scale and hearing the "He's not on the charts..." speech.

We are so very blessed to have met everyone... as it could not have come at a better time.

I guess the best thing we learned is: peace of mind! Thank y'all... we are so glad to be part of this family!