Tuesday, June 26, 2007

Secret Club

This is a club that we didn't even know that we joined. It just seemed like we would be out shopping with Ellie one day, and some one would come up to us and say ,"Hey, nice pump." And just like that we were in. With just that one statement we would feel like we knew these people and they felt like they knew us. That we knew something that everyone else around us didn't, and that no one around us could understand unless they had lived thought what we had.

These people would be just about anywhere. From the lady who fit Ellie for her first pair of real shoes, a sales woman in Macy's, to a woman in a book store who chased us down to get a better look at Ellie's backpack. The woman in the book store caught up with us and first thing she did was whip out her own pump. I guess that was like our version of a secret hand shake. We stood in that book store and talked about life with tubes and all that comes with it. It was great.
So tomorrow we leave for the Cape where we are going to attend the national conference for the Oley foundation. The Oley foundation is for all people that live with tubes, IV or G-tube. Patients, parents, doctors, nurses and specialists from all over the country are coming to the conference. There are a bunch of lectures and then in the afternoons there are break out sessions when we get into smaller groups and have more personal discussions, with specialists and parents/patients, about the issues that concern us.

We are very excited for this conference not only because many other Omegaven families are going, or because Dr. Puder will be presenting, but because of all the other kids/adults that will be there with tubes. For three days Ellie will be normal. I don't even know if she will notice, but I really want Ellie to see all those other people with tubes. This meeting will be like a huge meeting of our secret club.

The subjects that they are covering are really interesting to us and we hope to gain some very valuable knowledge about things that we can try with Ellie. Gib and I have to admit that we do find that we are chickens when it comes to trying new things. Especially when she is doing well. But, we need to expand our knowledge because you never know, she could be doing better.

We will try to post while on the trip. If you are a short gut parent/patient and you have some questions you would like us to ask about at the conference please email them to me (Abby) and we will do the best we can. Gib's sister Beth is coming along to help out with Ellie so that we can attend as many meetings as possible.

On a side note, as we were packing today I had a bit of fun with Ellie's hair. It is getting very long and I just couldn't help myself. Check it out.Yup, Pigtails. After so many months of cute but bald Ellie, I was so happy to be finally be able to play with her hair. They didn't last long, she figured out how to remove them very quickly. But it was fun. She was in rare form tonight, I also got some video.


Anonymous said...

She's such a cutie! Hope the conference goes well!


Anonymous said...

Hi Brogans- have fun at the Oley conference. There is a VACTERL conference going on now too (which I am missing- urrr)
I understand about the Secret Club ;) Two days ago in Babies R Us while at the checkout line I put Eithene in her car seat down. The next thing I know there is a woman bending over her saying to her husnband- "no it isn't- oh! yes it is!" umm- can I help you? "yep that's a g-tube right? (looking at her extension set which wasn't hooked up at the time "OUr daughter has one too!" Just like that- another meeting of the club. Keep up the good work!!!