Chromosome 22q

Dear Friends,

This seems like a good day to make this post I've been in anticipation about for some time. About a month ago Lydia had a blood tests to confirm a genetic disorder: Chromosome 22q 11.2 deletion syndrome is the full term, but it's generally referred to as 22q. Since most of you know already I'll spare the spill, but here's the official website's definition:

The 22q 11.2 Chromosome Deletion Syndrome on the twenty second chromosome that can cause such health problems such as heart defects, immune deficency, cleft palate,developmental delays, learning disabilities, and social/environment issues.

Here's the linkhttp://www.22q.org/ to find out more. I tried to paste some more info but I couldn't get it to work really well. When you get to the main page click on "what is 22q". Not only will it answer some of your questions about it, but maybe you might know someone who might want to get some testing done.

So far lots of testing as there is a wide array of what we don't know yet. The good news is this: Lydia exhibits mild symptoms besides the VPI associated with Speech. Everything we could be doing to help her we are currently doing...which was nice to hear. God has truly led us here. If we weren't in Philly we wouldn't know until much later in life. Also, I just want to add this event as it has proved to be an amazing resource and blessing in my life. In short it won't mean much to you, but I've been to China and back to figure out Early Intervention and how it applies to Lydia. The end product was tears and frustration. Amy, Tom's sister, lives near D.C. and is the ultimate at educating her kids and making it fun. So far, I'm not that great of a "Teacher-Mom", but I feel that we are near Amy and her family for a reason: she is helping me help my daughter when I felt completely overwhelmed in the education department not to mention completely unorganized. So Amy, if you read this just know I'm so grateful the Lord sent us to live by you. You are truly an inspiration to me.

I'm not sure what's around the next corner, but the only thing we can do is whistle while we work and hope for the best!

Tophams Visit

abbey. I told them to be spider man

Jane's landing...notice her spiderman fingers.

Stephen climbed to the top of the web.

On the museum steps. You should just know I will make you do this pose...it's tradition.

A day a Please Touch Museum. We were at the CHOP portion. Lydia likes being the doctor more than the patient.

The web merri-go- round. Mathew is laying over the second level.

Matthew going down the wooden slide

The famous Rocky Statue with his head cut off. Well, at least we barely got Maria in there!

Tom's Aunts came to visit us for a day. We had so much fun. I really love the age of 7, Stephen kept asking why all the statues were naked. What do you say to that? Anyway, we had a blast. Thanks again guys for such a great trip!

Lilly's Birthday

So, after posting the beach stuff I looked for a picture of myself. All I found was this really nice after-cake making picture of myself holding the fish with big lips (you've got to puck-up your lips like this...come on Little Mermaid people!). Like the grease and frizz? Yeah, I thought so. Well, that pretty much sums up Philly in August anyway. So here are some better pictures I stole from Martha's blog of Lilly and her cake. Isn't she a cutie? I really had fun doing it for her. And you should hear this kid, "My birf day! Happy birfday to me!". That was all worth it to see how fun it was and see the kids jumping around like monkeys.

We are so happy to have a BEACH

How do you like this face of Paul? Yes, Lyddie had her finger wrapped up in bandages. And why do I never take a picture of myself? Because when you are in the moment of taking pictures (which is hard for me to remember to do anyway) you forget to ask your husband to make a memory of you with the family. So now, these fun years will be documented, but alas, without a mom to prove I was there.

Out yonder are some dolphins in the first picture.