2 year portraits

These pictures made my day...enough said!

http://www.bloomaustin.com/blog/

Bathing Beauty

The Texas heat is has quickly arrived so we decided to put a small pool outside for Reagan.  She has always loved water so I was anxious to see if she would still have a good time, considering how many things have changed for her since last Summer.  But, she is still our little fish and had fun splashing around!

All Smiles

Here is a little peak at my big girl, Lauren, who is almost 4 months!

Oh Happy Days

Things have been going pretty well for Reagan for the past week.  She is no longer sick at all and has been a very happy toddler that loves to eat!  I am feeling a lot less stressed about her weight gain and hope that this pattern continues.  The only complaint that I have is that she has been having some inconsolable crying spells over the last few days.  They are around the same time every day (2x a day) and last for 30 - 45 minutes.  It is so sad because not even the Imagination Movers can make her feel better, which is usually our fix all.  But, some cuddling, gas drops, and prunes and I think we are back on the right track.

Reagan and I got to have some fun outside yesterday afternoon while Lauren napped and we had some special moments.  She was in a very loving, cuddly mood.  The wind was blowing in her hair and she walked around babbling and smiling as I snapped pictures.  She would circle around me then stop to give me a kiss and eventually stopped to sit with me and let me hug on her, and that doesn't happen very often!  Those are the moments that I try to concentrate on when she is crying big crocodile tears and I can't help her because I don't know the source of the pain.  Those moments make me happy to be the Mom to the sweetest little 2 year old with the biggest heart and willpower!

Girl Power 2 Cure!

I recently joined this non-profit organization that is dedicated to Rett Syndrome called Girl Power 2 Cure.  I mean, how could an organization founded by women and fighting for girls not be a great place!  Both the Founder/President, Ingrid Harding, and Program Director, Kelly Butler, are amazing Rett Moms that have already offered me support as we navigate through this new territory of RS.

As part of the membership, Reagan now has her own bio page on their website:
http://www.girlpower2cure.org/reagan.html

I love it and am happy to share :)

Time to vote!

We need your help!  Here is the info from the IRSF website.  Click this link to send your Congressman a letter saying that you support Rett Syndrome funding.  http://www.rettsyndromeadvocacy.com/alertdetail.aspx?AlertID=4

IRSF is extremely honored to have been invited to Congress to appear before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies on Wednesday, May 12th, to testify regarding the requested $500,000 in funding from the Center of Disease Control and Prevention to support education, awareness and outreach for patients, health professionals and the public regarding Rett syndrome (RTT).  This funding will also help us establish the foundation required to accelerate treatments of this debilitating brain disorder that is often misdiagnosed. 

Rett Family

I am constantly amazed and inspired by other members of the Rett world and their strength.  If there are any positives in joining this community, it has been to "meet" these Moms (and Dads)!  No one understands my family's pain like they do.  There are many days that this pain is overwhelming, so much so that I can not even put into words how I am feeling.  Then I'll read another Mom's blog (or exchange emails) about her daughter's journey with Rett Syndrome and she has put it into words for me, almost as if I wrote the words myself.  I'm sad that Rett Syndrome is what we have in common and that we were not able to meet under different circumstances.  But it is comforting that I am not alone and that they share my hatred for this awful disease that has robbed my daughter of the typical childhood that I dreamed she would have.  I am thankful for the many, many Rett Moms that have paved the way and struggled with finding a diagnosis for their daughter before their was a test for RS.  You have offered invaluable information on how to keep our girls happy and healthy.  You have also shown me that it is possible to get past the Regression stage of RS and that there is hope on the other side.  So, cheers to all the amazing Rett families and the unconditional love for our girls (and boys).