Sunday, March 28, 2010


Thanks to Rett Syndrome, Reagan lost the ability/desire to play independently with toys around the age of 10 - 12 months.  Now she'll usually walk over to a toy, gives it a glance or possibly even picks it up, then tosses it to the side and forgets about it.  I haven't seen her be engaged with a toy by herself in so long that I just kinda forgot it was possible.

However, on Friday she had a sudden interest in a new toy that lights up and sings music when you roll the ball on it or push a button.  She actually sat down in front of it and stay entertained by herself for a solid 5 minutes.  It was such a beautiful sight that I had to get pictures!  And to add to the joy, she sat criss-crossed all by herself as well, which she has been working on during her Physical therapy sessions.  Sitting in this position is difficult for her because it takes a lot of core strength.  She never ceases to amaze me :-)

Wednesday, March 24, 2010

Hump day update

Today is the third day that both my girls have been home with me during the week.  Up until Monday, Reagan continued to go to the "nursery" with Wes every day after Lauren was born to stay with Ms. Barbara so that Mommy could have a maternity leave and bond with Lauren.  Well, it's been 8 weeks (hard to believe!) and now I am a full-time stay at home Mommy!
Don't be mistaken - I was scared to death Monday morning of being terrorized by these two!  We are surviving though, and even better...we are having FUN!  I am really enjoying the extra time with Reagan and seeing first hand the strides that she is making to beat Rett Syndrome.  Yes, it's hard work keeping both a 2 year old and a 2 month old fed, happy and entertained.  Thankfully Spring is here and the weather has been great for outside play and long walks, which have been a lifesaver! 

Needless to say, there hasn't been much time to post updates.  Here is just a quick recap - Reagan has had a wonderful 2 days and Monday was one of her better days in Physical and Occupational Therapy. She stay focused the entire time and never once stopped trying.  Today was a little different because she woke up feeling bad so we had to skip therapy.  Her stomach pains finally went away and she went to sleep much happier tonight. 

We transitioned her crib to a toddler bed on Sunday and Rea Rea (nickname by cousin Evie) decided to show us how smart she is and quickly figured out how to escape.  I heard her a little noise Tuesday morning around 7am and was so shocked to see her out of bed.  Then Tuesday night she got out and was by her toybox when I peaked in on her.  I guess she wasn't ready for bedtime.  I love seeing her typical toddler behavior moments like these and jumped for joy, even though getting her to stay in her bed might be challenging later!

Saturday, March 20, 2010

Plain and simple

I HATE Rett Syndrome.  That has been repeated multiple times today as I struggle to come to grips with my reality that my sweet 2 year old daughter has Rett Syndrome.  Some parents are googling helpful hints on how to potty train their todder.  Not me, nope - I'm researching arm splints for my toddler so she can no longer chew on her hand (aka mouthing).  I've heard from other Rett parents that the dramatic increase in mouthing could be caused by teething (2 year molars) or reflux.  Oh, if only she could tell me what hurt.  Instead we are alternating teething tablets and children's Tums and trying the process of elimination approach.

We went to the bookstore today and as usual I went to the Parenting & Family section to find some useful books.  After a few minutes, I realized that this section no longer has any helpful books for me.  Titles such as "What to Expect the Toddler Years" and "The Happiest Toddler on the Block" can not give me any advice on how to raise a daughter that has Rett Syndrome.  Thankfully there is a Special Needs section where I found a great book titled "The Elephant in the Playroom".  It's a book where parents like me write honest stories about the struggles of raising children with special needs.  I am hoping their insightful words can ease my anxiety.

Friday, March 12, 2010

Lauren's at 8 weeks

I thought it was overdue to share an update on baby girl Lauren.  She is really a great baby and has already brought us so much happiness!  Her personality is starting to develop more and she loves to smile big at Mommy and Daddy and "talk" to us.  It just melts our hearts :)  In the last week she has started sleeping through the night for long stretches, up to 7 hours! 

We also got some great news about Lauren this week...she was tested for the MECP2 gene that is responsible for Rett Syndrome and it came back NEGATIVE!!!  That was a huge relief for us, even though there was only a 1% chance of it being positive.  We can now sleep easier at night!

Here she is showing off her adorable smile!

Thursday, March 11, 2010

Parenthood can be scary

Tuesday morning Reagan had a little run in with the toddler step-stool in our living room.  We didn't see how it happened but can only assume she fell and hit the corner of the stool (it's wood).  She must have hit it just right because it left her with a nice gash on her forehead.  I am so thankful that it happened when Wes was home because he was so much more level-headed than me in this stressful situation.  You have to understand that there was a lot of blood dripping from her head and it just freaked me out!  She was screaming, the baby was crying, and I wanted to also.  After about 10 minutes (or what felt like a lifetime), we got the bleeding to stop by applying pressure and were able to get her to calm down by snuggling with her on the couch while watching the Imagination Movers.  A quick trip to the Doctor to get some glue type stuff on it to seal and protect and she is good as new.  Me on the other hand, not so much.  It seems that more than before I am surveying her walking space and looking for things that will make her fall or sharp objects that she might hit!

Tuesday, March 9, 2010

The most amazing support team!

We are so very thankful to the wonderful friends and family that have given our family unbelievable support as we find our way through the diagnosis of Rett Syndrome.  We truly feel lucky to have so many wonderful people rallying around us and helping us get through this day by day!

I wanted to let you know that with all of your support we were able to EXCEED our fundraiser goal for Reagan's 2nd birthday!  During the creation of her fundraising site, I put that dollar amount in thinking that we would hopefully have raised those funds by her 3rd birthday and at that time we would start the annual goal over.  But once again the amazing people in our lives showed us how much they care.  We can not thank you enough for your contribution to fund the research that will lead to a cure for Rett Syndrome!

The results of the MSNBC and International Rett Syndrome Foundation (IRSF) advertisement on February 24th are phenomenal!  The IRSF Executive Director has reported that they received a total of $80,845 in online donations on February 24th  and it was officially the greatest day in online giving in Rett Syndrome history.  Yep, you all made history and we thank you!!!

Thursday, March 4, 2010

Isn't it ironic?!?

Today I had a follow up post-partum appointment with my Doctor.  It was at her old office by the hospital since she was on call (they have since moved locations) and the location brought back so many memories of being pregnant with Reagan.  One of those very vivid memories is of me and Wes at a prenatal appointment and Wes asking the Doctor very bluntly what were the odds of our baby girl being born without any medical issues.  He told her that you hear so much about the odds of down syndrome, birth defects, etc.  But, what is the percentage of babies that are born completely healthy.  The answer - 99%.  The odds were in our favor, or so we thought. 

I also remember being so nervous at the ultrasound when I was pregnant with Reagan and breathing a sigh of relief when there were no markers for Down Syndrome and that she had all 10 fingers and toes.  I had it in my head that those were the worst things that could happen.  I was even more relieved because I knew that I was not the kind, patient woman that could be the Mom of a child with a disability.  I have always been amazed at those Moms and marveled at their strength.  I now know that there are worse things...2 words, Rett Syndrome.  As my husband describes them, they are the most awful words he has ever heard in his entire life.

Here we are 2 years later and trying to find the meaning of the diagnosis and why our beautiful little girl has to face these daily struggles.  It must be so difficult for her to want to tell her parents want she wants or needs but to be unable to vocalize it; to love walking around outside and feel the wind blowing in her hair but get frustrated when she falls often; to not be able to control her hand movements enough so that she can play with the toys that she once loved.

But, in the end I must remember that there are definitely worse things that happen every day to children and that every day must be lived to the fullest because we don't know what will happen tomorrow.