Tuesday, July 31, 2012

Well hello friends

Life has been so busy these past few months and I cant wait to fill you all in on all the detail but that will have to wait because I want to update you one what's going on right now.

WE ARE AT THE PATIENT CARE CONFERENCE (PCC) FOR EB!!!!!

Well Anton, Tona, and I are here but Jason and the kids are doing a staycation with his parents at the Great Wolf Lodge in Texas.

Tona and her husband William are adopting a very special baby from Eastern Europe who has EB. She came to our house on the 22nd and I have been training her on all things EB. We have had a BLAST and she is going to be a GREAT EB Mom.

I was so excited about coming to the PCC and meeting so many families effected by EB. We had dinner with Matt, Patrice and Jonah tonight and let me tell you Jonah has grown up so much. Every time he would see Anton he would say "there's Anton" or "hi Anton" SO SO SO CUTE!!! I has LOVED hanging out with so many different people and IT'S JUST THE FIRST DAY!!!

So here are some pictures of the first day of the PCC.

Getting to meet Geri was a highlight for sure. She is the EB nurse through dEBra and I have called her a TON with questions. We LOVE Geri!


I have missed Patrice sooooo much!!!

And this is Bill at National Rehab. We order all of our bandages through him and he has been amazing! Once we brought Anton home and he was admitted to the hospital he overnighted everything we needed. I couldn't figure out how to get a wound to heal on Anton and he suggested I use Poly-Mem and that product has helped soooo much! We LOVE Bill!

And here is Anton with his little girlfriend. Yes I realize he is way too young for a girlfriend but these two hit it off :) He was being such a ham and LOVED playing with her. Ms. Ava is such a fire cracker I don't think she stopped moving and dancing the entire time we were there.

We got to meet so many amazing people and so many who followed Anton's story. It was overwhelming (in a good way) and beautiful all at the same time.

Some of the babies got a little loud so here we are at our spur of the moment baby play group.
 I will add a few more pictures of that play date tonight.

Here is Anton being cute!

Patrice and Jonah. Jonah has gotten so big and I think I told him I loved him one million times last night.


Dinner with Matt, Jonah, Patrice, Tona and Anton (he was asleep :)

I fell asleep before I finished this post but last night was awesome and I can't wait to learn more and meet new people today! Tona has been such a HUGE help and she is already wrapping Anton's arms and legs by herself. She is going to be an amazing EB Mama and I can't wait to write a post all about her! 

3 comments:

Anonymous said...

really great that you have an exciting time and a lot of friends at the conference!
ha ha what a glance Anton gives to his new girlfriend:)) our little macho:))
It looks like Anton put on some weight, aww...love his cute plump cheeks !
Was it a problem with conditioner at the hotel? I see you have to use a ventilator. I was hoping that friged cooling pillow would be good for this, its a pity if not.

What is the most important - wish this conference will be helpful in further treatment-care for Anton.
Angelika

borntolight said...

Vanessa, this is SO wonderful to hear from you and especially to hear about your EB conference! Anton looks great, and I am glad he met a girl he liked :) and also that he got to meet so many other kids with this condition! Hope you will leave this conference with many new friends, new tools and lots of energy and hope!

Anonymous said...

So great to see you guys again and see that Anton is doing well. Looks like Raul in the background of the play date, did you get to meet him and Caroline? Another amazing woman!

Can't wait for your next update from the conference!

Kim M
Waterford, MI