Things I learned at the Conference

[ErinFisher]

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.

[JenniferTenney]

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!

[mskelly]

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

[MichelleRogers]

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!

[ErinFisher]

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!!!

[StephBurton]

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

[MariaBrislin]

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.

[Chris and TracyMeats]

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.

[JenniferTenney]

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.