Things I learned at the Conference

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!

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

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.

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....

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....

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.

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???

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!

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!!!

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!

LOVE THIS THREAD!!!!

Things I learned....
Fair skin and sunblock does not mean you won't get burned like a lobster...
Folding brochures dries out your hands...
And I can wake up at the crack of dawn and still mostly function....lol

But seriously. This conference was an eye opener for me. Aaron and I had gone to a local group for theropy about lossing Zoe. While it was a great idea for people who lost their babies.....no one in the group had gotten to know their babies...all were lost in pregnancy. That was really hard for us. Not being able to relate to anyone there. While Aaron was unable to make it to the conference, between him and Dawn, I was "forced" to go. And I needed it so very badly. It was wonderful to meet all the people there, to see and meet people that knew so many of the things we had gone through. While meeting parents that still have their Cherubs with them was hard it was also very good for me. To see that babies do survive this. And to meet Karen and DeAnn and spending time with Dawn who had lost their children too but are still living their lives and working so hard in their Cherubs' memory. It gives me hope taht one day I won't always cry at the drop of the hat.

Thank you to everyone. I had been scared that because I no longer had Zoe here with me that I might feel out of place....but I never did. I came home full of ideas to help raise awareness and research that I can and have talked to some of Zoe's doctors about. I could not ask for more love and support than I got from all of you. You truely are Angels just like your Cherubs.

It was great to meet you in person Erin! I think you are so incredibly strong and it was so clear from talking to you how much you love Zoe and how lucky she was and is to have you as her mom! I loved hearing her story ... what a special angel!

I'm a total blubbering mess after reading all these posts. All I can say is this conference was like a breath of fresh air that I never realized that I needed. I am so blessed to have a survivor who is doing so well, but feel as if we don't fit in with other families...they all think CDH is behind us, but being with our Cherubs family in Florida...people we'd only ever met over a computer, felt like home. I'm not a great traveller, but this trip was the EASIEST I've ever done. THANK YOU, THANK YOU ALL of you for helping me and being there for me each in your own special way!! <3

Love & Hugs from Canada <3

I really wish that we could have been there. The funds were just not here for it(I am waiting on a settlement from a car accident from 2007 and we were hoping that it would have been done before the conference and we were going to go!) I would love to learn all I can about CDH, and help to find out what exactly causes it!

Shana it was soooo wonderful to finally meet you and your wonderful family. This family is one of the things that as my mother-in-law says...."it's never a group that you want to be a part of....but once you are, you find the best people to lift you up from the brink and lend a shoulder to cry on." Love and Hugs to all of my CDH family. You are wonderful people!!!

Erin,
I'm so glad that you were "forced" to attend the conference. Zoe has a wonderfully strong mother. And she will continue to touch lives through you and your family. She is an amazing angel.
love,
Steph

I've just been able to get onto the forum & missed the conference, but I just wanted to add a comment about Early Intervention- we are currently getting PT for my son Owen through EI, but it is important for people to know that it is not free in every state- here in NJ you pay for it on a sliding scale based on income. EI actually costs the same for us as getting PT through our private insurance but we decided to try them first because they come to you house. I'm not totally happy with the therapist assigned to us, so we will probably just switch to paying for a Pt through our insurance. Just wanted to give people a heads up before you go through all these meetings and evaluations to set up EI (which takes forever) and then be surprised to get a bill.

That is interesting, I thought most early intervention was free. But, if you think about it, it probably depends on the state and their budget. Thanks for sharing! Any therapy or ealy intervention for a CDH baby is so helpful. It sure helped my son be on target when he started kindergarten. It is nice they make visits to the house...maybe you can find a private PT that would make house calls, you never know.

I heard so many Early Intervention success stories and it sounded like a wonderful thing at the conference, however, I too had issues when I tried to get Dakota signed up for it. Florida does pay for it, however, my problem is that we live on a little island with no pediatric therapists on the Island and nobody willing to drive that far (honestly it's not that far, 20 minutes from Naples, FL, but people from the mainland act like it is the boonies). I got the EI evaluation people to come to my house but they told me straight up that they did not currently have a therapist willing to travel to my home, so if Dakota did qualify, I would have to bring her somewhere. When they did evaluate her, they decided she did not qualify. She only said one word at 18 months old ("hot") and did not even babble anything else but they said she met all the requirements because she understood everything and followed directions very well and did not qualify for speech. She did not eat very much, but because she knew how to hold a spoon and knew how to feed herself (not that she liked to or did very much), she did not qualify for speech therapy for food. So I was disappointed and suspected that our location was playing into their evaluation, but in the end we just kept working with her ourselves and she is completely on target now and I think, even smarter than average - definitely more sweet and adorable than average, at least in her mama's eyes =). Well, except for the pooping in the potty thing, but there is always something. Anyways, I would in no way ever discourage any CDH mom or dad from trying every option to get their child therapy and help, especially when it's free! I was very glad I tried. I think it has helped so many, many kids. We just live in a weird place.