Welcome

My name is Sherri. My husband Matt and I are so proud of our 2 great kids who joined our family through the blessing of adoption.

Micayla is our oldest and she has DiGeorge Syndrome. She was diagnosed before birth. She had her first heart surgery at 9 days old. It's been rough at times but she is doing great!!

I created this blog as a place where families dealing with VCFS can link together to share our trials, triumphs, fears and dreams.

Along the left hand side here you will see a list of families/kids that are dealing with VCFS, if you would like to be linked there please comment with your link or email sherriwj@msn.com If there is something that you would like to post please let me know.


Tuesday, December 15, 2009

Migraines

We had a scary thing happen this past weekend. Micayla was hit with a sudden and very painful headache. I took her to the peds office where they told me that they weren't sure but they thought it was possible that she had meningitis or encephalitis. SCARY!! So they sent us to Primary Children's Hospital. Because Matt works as a paramedic we opted to go by ambulance, we knew we could get her there quicker and since Matt was at work at one of his side jobs in Salt Lake so I wouldn't have to drive there alone and worry about her in the backseat. We were really worried about her.

After a few hours of exams and observation it was decided that she likely had a migraine. She complains of headaches a couple times a week but has never had anything this bad. We will be taking her in for a follow-up with her ped next week.

I have migraines occasionally and they are horrible, I can't imagine what it was like for her. Hopefully we will be able to figure out a plan for dealing with these in the future.

Anyone else dealing with migraines in their children?

Tuesday, November 17, 2009

National Conference

Hey I was so excited to get an email for the VCFS Educational Foundation yesterday. They have a new website and are also on Facebook now!

SUPER exciting news for me is that the conference is in Salt Lake City in July 2010!! Yeah!

Just in case you didn't get the email here it is:

We are excited to share our new, improved web site with you. Be sure to take a look at www.vcfsef.org. Thank you to our new webmaster, Kevin Greek.

While online, join us on Facebook (there is a link from the homepage of our website to take you right there).

Don't forget to save the date:

The 17th Annual International Scientific Meeting of the VCFS Educational Foundation
July 16-18, 2010
Salt Lake City, Utah

The Abstract submission form is on our website!

Saturday, September 19, 2009

Roll Call!

How is everyone doing???

I was wondering if your kids will be getting the H1N1 Vaccine....

Friday, June 19, 2009

Pass It On --- and an update......

I finished reading Quinn Bradley's book a while back and I keep forgetting to ask if anyone else wants to read it. I will be happy to pass it on..... Let me know.

One thing is for sure - I actually became a little more worried about Micayla's educational future when I read this book. I actually saw Micayla a lot in his story. Combine that with a few issues we had with her school in her kindergarten year, and withmy belief that at some point she will become lost in the public school system we have decided to homeschool her.

She got into th Utah Virtual Academy. It's an online charter school with a great cirriculum. We are all really excited. We will be able to learn together at a pace that she is comfortable with.

Last week she had her annual echo. I hate those things! I try not to look at the screen because even though I have no idea what anything means I always feel like something is wrong. We I WAS WRONG. Everything was great! It's so weird having a Dr. that is great at what he does and has all that education tell you how much of a miracle you child is. Well anyway, we are set for another year.

Friday, April 10, 2009

Quinn Bradlee on CNN today

Quinn Bradlee's Book

Quinn Bradlee, who has VCFS, just wrote a memoir for us called A Different Life: Growing Up Learning Disabled and Other Adventures. He’s been getting a lot of press in the US for his book, and website that he just launched, www.friendsofquinn.com.

Quinn will also be making the following public appearances:

4/9 PBS News Hour with Jim Lehrer

4/13 NPR “The Diane Rehm Show”

4/14 ABC Radio “Imus in the Morning”

4/21 ABC “The View”

4/23 Politics & Prose Bookstore ( Washington DC ) 7 pm