Random sister pics

We keep on moving forward

I am trying to keep on trucking today and find the positives.  In the last 24 hours I have heard of 2 Rett Angels passing away and also a newly diagnosed Rett Angel at 20 months.  My heart is breaking for all of these families.  The news of the passing Angels seems to rip the band-aide of my healing wound.  Its moments like this that I want to give up hope.  That I am quickly reminded that my dream of a cure might not happen and that it could be my daughter passing away so young.  I hate Rett Syndrome and the pain that it causes our children.
I am going to focus on my 10 minutes with my sweet angel last night and not worry about tomorrow, it's just sometimes easier said than done.

The Best 10 minutes of the day

The best ten minutes of my day was right before Reagan's bedtime.  She was not feeling a 100% today, between some stomach issues and also cold-like symptoms, so their was a meltdown after her bath.  I took her to bed and held her in my arms and then we laid down.  She stayed wrapped in my arms, perfectly content and happy.  I loved the snuggled time with her and appreciating the moment.  I don't know what tomorrow brings for us, but I know that today I got to spend 10 minutes of uninterrupted time holding my Angel and showing her how much I love her.

Let the healing begin!

I have been trying to pace myself into the entry of the world of Rett Syndrome since that fateful phone call of Reagan's diagnosis just 4 months ago.  You see, my personality tends to be one that becomes very involved, or maybe obsessive is a better word, in my interests.  The diagnosis, followed by the birth of our second daughter the next day, has kept me very busy.  I didn't want to bite off more than I can chew.  However, I think that I have had enough time...it's time to be involved and fight for a cure!
This evening I had the pleasure of meeting a fellow Rett Mom from the Houston area (Kella) and IRSF Special Events Program Manager, Jenni, to discuss an upcoming fundraiser.  I am excited to join these ladies, and many others, in planning the 2nd annual Texas Strollothon in October...more details to follow in the upcoming month!
I can not change the diagnosis for my sweet daughter, but I can fight for her.  I can not sell our house and give all the proceeds to research, but I can help bring awareness and funding to the cause by asking for help.  I can not hear my daughter say "I love you, Mommy", but I can see it in her eyes...and that's what keeps me going.  I hope that becoming involved will help me feel like I am contributing to the cure as well as let my wounds heal.

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.