Another day, another medical test

Reagan had an Upper GI (gastro intestinal) test done on Monday, requested by Dr. Motil at the Blue Bird Rett Clinic.  She was concerned about Reagan having reflux and other possible reasons for her gagging and eating issues.  The test was not as simple of a procedure as I thought it would be but thankfully it was very short.  Poor Reagan was not a fan and it was pure torture for her, and just as awful to stand there and watch.

I have not spoken to Dr. Motil yet but I did get an opportunity to speak with her nurse.  She said that it looks like Reagan's stomach has a delay in emptying.  This could cause her to be full for longer and not want to eat as much.  Also can be the reason for reflux and always feeling like she needs to burp.  I am anxious to get more information but in the meantime have reached out the my Rett family to see if anyone has more information or advice.  So, good news is that we might have a possible solution to her feeding issues soon!

Morgan's Wonderland

My wonderful sister-in-law (Erin) and I took our 4 kids (who are all under 27 months old) to Morgan's Wonderland on Friday.  Morgan's is a family fun park that recently opened a few months ago in San Antonio that was designed for people of special needs!  I was really anxious because I wasn't sure what to expect but I am happy to say that I was delightfully happy.  All of the staff were very courteous and there were plenty of things for both Reagan and her cousin Evie to enjoy.

We started off at the Butterfly Playground and Reagan enjoyed being able to walk up and all around on the gym.    Evie loved playing on the see-saw and climbing on the gym.

Then we took a little train ride around the park's pond:

The heat started getting the best of us so we decided to take a break in the Park's Sensory Village.  One of the rooms was a market for shopping and Evie had a blast!  Another room is a stimulation room with lights on the walls and floors that both girls loved.  Evie showing Reagan the butterflies on the wall:

We ended our visit with a nice lunch in the picnic area.  I am so happy that we live so close! 

Just a simple request

A cure for Rett Syndrome has to be within reach.  Plain and simple.

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).

Arm braces

The new arm braces (from armbraces.com) have been working really well and Reagan still doesn't seem to mind them.  See for yourself :)

She finally seems to be feeling better and has her appetite back!  It really makes me a lot less anxious when she is eating well.  Of course, who wouldn't love strawberries dipped in blueberry syrup with heavy whipping cream!  

Lauren update - 15 weeks

Little baby girl Lauren is growing up way to quickly!  She is already 15 weeks and probably about 15 pounds.  Her newest adventures are giggling, mastering the use of hands as she pulls toys to her mouth, and rolling over.  Although the rolling over has yet to be seen by an adult, but we have no other way to explain how she got from her belly to her back!  She loves to be read to and is also quite the conversationalist!  Here are some pics:

Enjoying Daddy time with a nice bubble bath

Just hangin' with Mommy

Showing off her baby blues