Sunday, August 2, 2009

Where have we been?

Well, it seems that we are quite late in posting anything to the Blog!
We went to Chicago for Charge Conference. The Charge Conference was basically 700+ people that are either have CHARGE Syndrome, are the parents of someone with CHARGE syndrome, family of someone with CHARGE Syndrome or professionals (teachers, doctors, researchers) affiliated with CHARGE Syndrome.
It was an action packed weekend!
For the parents, action packed days of lectures / information sessions.
For the kids, action packed days of play group.
Meals were provided and a ton of entertainment! One night they had a social hour, another night CHARGE Idol, another night Carnival / Dance Party (and Rachel Coleman from Signing Times).
It was all-around-exhausting!
The kids sort of adjusted to the time zone but they were asleep about 2 seconds after they were put in their pack-n-plays each night. And Jessica HATES sleeping in a pack-n-play and there were no complaints from her. Exhausted!

Many people have asked why we went to this conference....
It a lot of ways it's probably confusing and in other ways, it makes perfect sense.
1. Most of you know already that Alexis is "undiagnosed," genetically speaking that is.
2. Alexis has a lot of similarities to the kids with CHARGE (deaf-blindness, limited mobility, food/eating problems/swallowing difficulties, g-tube feedings, kidney difficulties, etc)
3. Alexis' parents (us) have a lot of similiarities to the parents of CHARGE kiddos (dealing with educational issues, medical issues, teaching a toddler how to eat, teaching a toddler how to walk when they don't balance well, teaching a toddler how to talk even though they don't understand clearly).
4. Alexis' family is the whole world. Meaning, there is a popular saying, "It takes a village to raise a child." Well, for Alexis, "It takes the whole world to raise a CHARGE child".
So over the past 6-9 months I've been on the CHARGE email list. It truly has been a source of strength and family network beyond anything that I have ever found otherwise. Mostly made up of mothers, these mothers have been through EVERYTHING. Unfortunately, more trials and tribulations than normal people should go through. But fortunately, they are a wonderful group of ladies that want to make sure others can learn from their experiences. As well, there are many people with CHARGE on the email as well, which is a major source of inspiration. So, these folks are my WHOLE WORLD, helping me navigate the path for Alexis.

So, what did we get out of the conference? (I probably won't do this justice)
1. Face-to-face contact with my other CHARGE families. I have followed many of them on their family blogs, it was GREAT AWESOME SPECTACULAR to hug them and meet their beautiful children!
2. Adhoc interaction with leading medical researchers in CHARGE to help determine if Alexis has a genetic syndrome (there was one vote for 18q deletion and another vote for "not-CHARGE" based on looking at her hands, "she doesn't have CHARGE hands".)
3. Whether or not Alexis has a different genetic syndrome, we are STUCK with CHARGE. These people are our family, they get us, they understand our struggles, they cherish our children, they support our dreams, they believe in us and know how difficult each day is. So, we are happily STUCK with CHARGE, because the family reunions are awesome.

So, when is the next CHARGE Conference? 2 YEARS from now! In July, In Orlando Florida. It will be even more AWESOME than this year, because we will get Alexis ready for her live performance (I don't know what she'll do, she plays a mean piano and does a great boogie). Also, it'll be even more AWESOME than this year because every 2 years when they have the conference, it seems that it's grown by 20-25% each year. So, there will be even more families at the conference. And FRIENDS AND FAMILIES are welcome to attend.

So, I will get to bed now because I have to work tomorrow.
P.S. Alexis is out of school for the month of August -- so PARTY TIME for Alexis!!! She did get her Progress Report from Perkins, she hasn't been expelled yet (just kidding!!)

Love to you all,


Lisa W. said...

It doesn't matter the label; you are a member of our family. Like you said, and like Michele said in her closing, we are FAMILY, we go through similar things and the support we all get from each other makes it a pretty darn awesome family to be part of. I'm glad you found us...:)

Good to see you again and good to hear missy isn't expelled from Perkins LOL...

Kurby Family said...

It was so wonderful meeting you, even if it was in the last few moments. Thank you so much for introducing yourself and sharing so much about yourself. Although I wasn't introduced to Alexis I did see her could I forget the adorable little girl with pink glasses. I saw her on day one, she is so sweet! Can't wait to hear what she does this August being out of school!

Eva Nichole said...

Alexis was the 1st CHARGEr was saw at the hotel when we checked in. She is adorable and I am so glad we got to meet you all!!
Crystal and Eva