Thursday, September 30, 2010

Searching for some fighting power

I know that I have posted before about the roller coaster of emotions that I have felt since Reagan's diagnosis.  There will be weeks of bliss where I could not imagine our sweet daughter any other way.  Then out of nowhere the heartache will surface and hit me hard.  I try not to post too much during those days or weeks because let's be honest, who wants to read a depressing blog?!?  But I also want this blog to be about the truthful trials and tribulations of having a daughter with Rett Syndrome.

This week I have had to dig deep to keep the momentum forward.  I feel that some of my fighting power has been extinguished.  It is not because Reagan is having a rough time, thankfully she is doing really well.  However, it is because that everywhere I turn, there is always a roadblock and I have to "fight" to get things for my daughter.  It can be finding therapists that are a good "fit" for Reagan, getting her on programs that will help her and our family, getting the insurance company to pay, getting meetings set up for communication devices, getting prescriptions filled, transferring her to the pre-school education program.  I guess you get the idea.  It would seem that people would realize that caring for a special needs child in and of itself is difficult.  Why can't the other processes be easy or simple?

Over time it wears me down and I retreat a little.  I retreat into my cozy home and our simple routines.  I lay on the floor and play with my girls.  I take simple pleasures in seeing both girls give me a big smile when they wake up.  I give myself time to find the fight again because I know that I can not quit now.  I think about all the little girls out there suffering with Rett Syndrome and how they fight daily to have a quality of life that we sometimes take for granted.  They fight to learn how to use a device that will talk for them.  How to use a wheelchair or gait-walker to be mobile.  They fight to overcome the stereotypes of the disabled, that "mentally retarded" is a word to easily throw around when joking.

So, tomorrow I will find the strength to find my fight and continue putting one foot in front of another to be the Mommy that my girls deserve.

Monday, September 20, 2010

Strollathon update

The Austin Strollathon was on Saturday and it was a very exciting and fun event!  Thank you to all that came out to support our family and the other families affected by Rett Syndrome.  Here are some pictures from Bloom Photography:

The total amount raised by Austin for the "Stroll Across Texas" IRSF event is more than $16,000!!!  We want to express our gratitude for all of you that donated and also that spread the word to bring awareness to this debilitating disorder!  I look forward to chairing the event again and working with all of you amazing people to have another successful day for Rett Syndrome.

Tuesday, September 14, 2010


This post comes to you from the comfort of our nursing home room this evening.  Yep, Reagan and I are staying in a nursing home about 2 hours away from our house to meet the qualifications for her to get on the Medically Dependent Children's Program with TX.  It's really not that bad, if our room wasn't 80 degrees, but at least Reagan doesn't seem to care.  She is out cold just a few feet away.

Reagan was in a wonderful mood today and I was able to get some of her smiles and giggles on camera, sorry for the poor quality because it is from my phone, but you get the point.  She is such a silly and sweet girl!


I am so excited to announce that Schwan's will be at the Austin Rett Syndrome strollathon this weekend giving out FREE ice cream!  And on top of that, they are donating 10% of the proceeds from purchases that day as well!  A big thank you to Schwan's local office and General Manager, Henry, for making this possible!

Monday, September 13, 2010

She will "talk"

Today we had a meeting with Reagan's speech therapist and a Representative from an Augmentative communication device company.  We are starting the process to find the right device for Reagan, a device that will give her a voice.  Of course, we are realistic that it will take some time for her to get used to the device and be able to use it independently.  However, the thought of her being able to make food choices, or let me know what she would like to do, brings smiles to this Mommy's face.

I think about her inability to verbally communicate often, and how difficult that would be.  She relies on me (and Wes, but mostly me since I am home with her during the day) to make every choice for her, from when and what she will eat to when she will go to sleep, to our activities throughout the day.  She can be quite verbal in letting me know when she is not pleased with my decisions and yet her giggles and smiles also make me happy to know that she likes what we are doing.  But,  this device will eventually open up so many doors for her and give her that independence that I know she must be wanting.  Heck, being a 2 year old is all about finding your independence and feeling that you can make decisions!

I hope that we find the device that will be successful and the transition painless for her and that the process to get it into our house goes smoothly!

Tuesday, September 7, 2010


Today's post will be less words and more pictures because let's be honest, it's after 9pm and my brain is no longer capable of completing full thoughts after a long day.  My sister-in-law and I took our oldest daughter's to the zoo and a good time was had by all!

Reagan ready for the zoo

Reagan and Evie visiting the tiger

Well hello Mr. Billy goat


And after - yep, that Rooster flew right over her without warning!

up close and personal

sealing the trip with a kiss, best part of my day!

Thursday, September 2, 2010

Weight check

I am so excited to say that Reagan has finally passed the 27 pound marker in weight!!!  She was at 26lbs and 11oz for both weight checks in June and July and I was not sure what else I could do to get this girl to gain some weight.  But, she did it in her own time and for August she was 27lbs and 6oz...woohoo!  It is the 25th to 50th percentile so I am very happy with that.  She is also getting taller and is now 36 1/2 inches, which is the 75th percentile...we have one tall 2 year old!

At her well-baby visit at the beginning of the year she weighed 25lbs 7oz and was 35 3/8 inches.  So, in 7 1/2 months she has gained 2 pounds!  I have been told that the average weight gain for a 2 year old is 3 pounds a year so it looks like we are right in line.