Wednesday, February 24, 2010

Happy 2nd Birthday Reagan!

Two years ago today our beautiful baby girl was born at 4:09am.  I'll never forget the joy that I felt when I held her in my arms for the first time, her big blue eyes looking up at me.  I realized then that my heart could love more than I ever imagined. 

In honor of Reagan's birthday (kidding), http://www.msnbc/ has posted an ad for IRSF (International Rett Syndrome Foundation) to bring awareness & raise funds for Rett Syndrome research.  All donations made to IRSF today only will be matched.  You can make a donation on Reagan's personal IRSF website - http://www.firstgiving.com/reaganhaley.

Here's a look back at the last 2 years...
two years ago on her first day home

one year ago with her birthday car

today a happy 2 year old with her baby sister

Friday, February 19, 2010

Reagan's Donation page

I have recently been requested by family to give them gift ideas for Reagan's upcoming 2nd birthday. In all honesty, I can not think of many ideas of tangible gifts that she needs. I think the thing that would be most beneficial to her is finding a cure for Rett Syndrome. For this to be accomplished, the International Rett Syndrome Foundation (IRSF) needs donations to support their continued research.  I have created a donation page to support their fundraising efforts so our daughter can become one step closer to being cured!  Please remember that every single dollar helps and thank you in advance for your generosity!
http://www.firstgiving.com/reaganhaley

Wednesday, February 17, 2010

Therapy day!

This morning Reagan met with both her Occupational and Speech Therapists at the "gym". She is always excited when we get there and tries to walk to the play area before time! I'm glad that she enjoys it so much...fun and work at the same time! She is currently getting an hour 2x a week of both therapies.

Monday, February 15, 2010

The good and the bad with Rett Syndrome

Some days are certainly better than others and unfortunately today has been one of the more emotionally challenging days for me. Reagan had one of her inconsolable spells (symptom of RS) last night before bedtime and those are always really difficult. I hate seeing her so upset and frustrated and it's even worse that she can't communicate with us what is bothering her. She woke up in a really good mood this morning though so all was better.

However, I had a meeting with her Physical and Speech therapists this morning through the ECI program. It was our last meeting since we have moved Reagan to private therapy instead. They were providing me with some insight on education options for Reagan as she approaches 3 and we begin to think about pre-school. But, I do much better emotionally living in the moment and taking Rett syndrome day by day instead of thinking to the future and the challenges it might present. Needless to say I have been upset ever since. I downloaded this video clip of Reagan 'jumping' from this weekend to make me smile and thought I would share!

video

Friday, February 12, 2010

Reagan loves her new little sister!



Lauren Kendall was born on January 16th weighing 8lbs 6oz and 20 inches long. Reagan has adjusted well to life with a little sister and loves to give her "baby" kisses!

The diagnosis


It's been almost a month since I received the phone call confirming that Reagan has Rett Syndrome. At the time, it felt like my world was crumbling and life would never be the same for our family. However, I soon realized that our daughter is the same sweet little girl that she's always been whose giggles can brighten anyone's day!