Thursday, January 27, 2011

Publicity for RS!

I just received this great email from the Rett Syndrome Research Trust:




The View Looks at Rett Syndrome
The women of The View will be speaking with View cameraman Manny Gutierrez and his wife Stefanie about their daughter Anna and their journey with Rett Syndrome.

They will be joined by Monica Coenraads, Executive Director of the Rett Syndrome Research Trust.

Tune in this Friday, January 28th, on ABC at 11am EST/ 10am PT and Central.



You can meet the family on their Girl Power to Cure page:  http://www.girlpower2cure.org/anna

Wednesday, January 26, 2011

Wait, isn't this Reagan's blog?

I feel a little guilty because a blog that I created about and for Reagan has been hijacked by posts either about Lauren or my ability to cope (or not) with Rett Syndrome.  I have done very little posting about Reagan lately.

She has been very happy lately, giving smiles daily and letting out a giggle here and there.  I think she is finally having a comeback from the mono virus and seems to be less lethargic.  She is still tired more than she used to be but nothing like she has been for the past several months.

It turns out she no longer needs eye glasses for strabismus.   I have not been putting the glasses on her because they seem to small and very uncomfortable.  I meant to take them back to the store but never really found the time during the holidays.  She saw the optometrist last week for her two month follow up and it turns out the left eye is almost completely straight.  The only thing we can conclude is that it was the muscle fatigue from having mono that made her eye cross more often.  We'll watch it and see if it becomes an issue again.  Speaking of issues, her weight is still a problem but that shouldn't be much news to anyone!

We had a warm not so cold day recently so we had a little fun outside.  Well, all of 15 minutes before Reagan got: a) tired of my camera in her face, b) bored with watching Lauren dig in the mud, and c) frustrated with not watching the Movers.  Oh, and don't ya know that Girl Power 2 Cure t-shirts are all the rage?



Tuesday, January 25, 2011

Lauren walking!

Warning - you should turn your volume way down, or maybe just completely off, because my level of excitement got a little carried away.  And the quality is a little poor since it's from my phone, but you get the idea!

She started taking a step or two a few weeks ago and then 5 or 6 the week before her big first birthday!
video

Sunday, January 16, 2011

Happy 1st Birthday, Lauren!

On this day last year, at 9:13pm, Lauren Kendall was born.  I'll never forget the way she was crying right after her delivery and then she immediately stopped when we locked eyes...she's had my heart ever since.  I love you sweet baby girl and I hope your first birthday was very special!

welcome banner

Ready to dig in!

why waste time with hands???

admiring her card from cousin Evie

having a party in Reagan's room

Reagan getting love from Tante Erin





Friday, January 14, 2011

Does it change anything?

A year ago today I was just a Mommy, only a Mommy of one little girl instead of two at that.  I was not a Mommy of a special needs child and had not yet entered the new world of Rett Syndrome.  Tomorrow marks the one year anniversary of that phone call where we learned of Reagan's diagnosis.  There are times (okay, at least once a week) that I think of that day and it takes all the control that I have not to drop to my knees again in sobs.  But the truth is that I am also very thankful for that phone call, for finally receiving an answer for the delayed development.  I am happy that we were welcomed with open arms from other families and they immediately knew everything that I was feeling.  I felt so alone and isolated after the diagnosis and thought no one understood my pain.  I reached out to the online Rett community and quickly learned that they all understood, they got "it".

I am trying really hard not to put too much focus and attention on the diagnosis day (and was even hesitate to blog about it), but my brain keeps trying to tug me into that dark place, and my heart is too eager to follow.  I plan to keep myself as busy as possible and think of all the positive things in my life when I feel the urge to cry uncontrollably.  As a matter of fact, I am just taking a break from getting the house ready for a one year old birthday party tomorrow.  Yep, we are going to have a birthday party for Lauren tomorrow and celebrate in a big way.  And tonight, I am going to the George Strait concert, thanks to my wonderful husband who surprised me with these tickets for Christmas.  I am going to just be a fan tonight, not a Mommy, not a special needs Mommy, just me, a woman that has ALWAYS wanted to see George Strait in concert.  One more item checked off of my bucket list!