Black Friday

We didn't do any shopping on the day after Thanksgiving.  Instead we went to Elgin Tree Farm for our tradition of cutting down our Christmas tree.  The girls were both in good spirits and we were all full of holiday cheer.  We walked around searching for the perfect tree, sipped hot chocolate, and looked at the animals in the petting zoo area.  Reagan even found enough energy to walk around a little bit to admire our tree before we cut it down.

Ready for Christmas tree shopping!

happy with our tree choice

content

even gave away kisses

with Mommy

Yep, Lauren was there too, promise!

she loves to swing!

Poem

I have seen this poem circulated a few times among my online Rett community and it touches my heart every single time.  It was written by Kathy Hunter, Rett Mom and founder of what is now IRSA and is now IRSF (International Rett Syndrome Foundation).


           Before I was a special parent.
           I thought RETT SYNDROME was something you got from
           Watching too many re-runs of Gone with The Wind
           That is, after you recovered from Scarlett Fever
           Before I was a special parent.
           PT meant part-time
           OT meant overtime
           BRACES were something you wore on your teeth.
           And a WIDE GAIT was attached to my fence

           Before I was a special parent.
           I actually had a savings account
           I didn't know that I should have invested heavily
           In Scott paper towels, Attends, Velcro and Applesauce

           Before I was a special parent.
           RIGIDITY was my anal-retentive boss
           SELF-INJURIOIUS BEHAVIOR was what I did on a night at the casino
           MOOD SWINGS came only with PMS
           And VALIUM was used by high strung socialites

           Before I was a special parent.
           I thought BUTTONS went on your blouse, not your belly
           GENES were labeled Levi or Guess
           And MUTATIONS were confined to the Incredible Hulk

           Before I was a special parent.
           I thought the IRSA was the IRS Association
           HANDWRINGING was what you did after an audit
           SEIZURE was what they did when you failed
           And RESIDENTIAL PLACEMENT was a jail term

           Before I was a special parent.
           STATUS was something you earned, not dreaded
           And when you got it, MOBILITY was usually upward
           A FINE MOTOR ACTIVITY was taking the Chevy thru the car wash
           And a GROSS MOTOR MOVEMENT was the universal one-finger salute

           Before I was a special parent.
           VACANT SPELLS were related to real estate
           SPASTICITY was a good Jerry Lewis movie
           The IDEA was just a bright little thought
           And GUILT came from something I did, not from something I didn't do

           Before I was a special parent.
           BALANCE referred to my checkbook
           CIRCULATION was about my hometown newspaper
           HYPERVENTILATION was limited to Rover's greeting
           And CURVATURE was very sexy

           Before I was a special parent.
           COMMUNICATION was about saying all the right things
           IEP was pronounced IPE
           INCLUSION meant tax added
           And IMPACTION was a speedway crash

           Before I was a special parent.
           My other children were called kids, Not SIBLINGS
           They played together, not INTERACTED
           And my husband's 3 most important words before drifting off to sleep were
           I Love You Instead of DID SHE POOP?

           Before I was a special parent.
           I thought shoes with VELCRO were for lazy people
           ADAPT meant telling someone to get over it already
           And ASPIRATION meant ambition.

           BUT ALSO

           Before I was a special parent.

           I didn't know that SORROW never leaves you where it found you
           I didn't know that such unbridled JOY could come from heartbreak

           I didn't know that my child would be my TEACHER

           I didn't know the meaning of UNCONDITIONAL LOVE

           I didn't realize that the little stuff is really THE BIG STUFF

           I didn't know how well someone could COMMUNICATE without words

           I didn't know that when God sizes us up, he measures the HEART, not the head.

           I didn't know that milestones are not as important as SMILESTONES

           I didn't know that my child would TOUCH the world not from what she has done, but from what she cannot do

           I didn't know the POWER of her powerlessness.

           I didn't know that I had so much to learn.

           by Kathy Hunter
           Copyright 2005

Just another day (week and month)

I wish that I had some really fun pictures to share or exciting stories from a recent outing with the girls, but we have been doing a lot of nothing lately.  Our life has been very normal, at least normal for our family.  Reagan does not seem to enjoy many outings in the last month (or longer) so it has been hard to take her places.  It is hit or miss on whether she will throw a massive fit once we arrive at our location.  And honestly, it takes a lot of effort to get 2 small children fed, dressed, in the car and then drive at least 30 minutes to wherever we may be going.  So it is completely not worth it if once we get there she is not happy.  So, we've just been hanging out.  We go for lots of walks around the neighborhood and try to go outside several times a day just to soak up some vitamin D.  We are home a lot, but she is happy and lately that has been more important to me than fitting her in a box of typical kid outings.  I am hoping that she will grow out of this homebody stage soon!

Until then, I have been lucky enough to find someone to come hang out with Reagan for a few hours a week so that I can take Lauren to things she might enjoy.  Tomorrow is her first class at Gymboree and I could not be MORE excited!  Call me lame, but I have always wanted to participate in one of these classes and what better time than when you get a Groupon deal!  It almost has the same excitement for me as seeing one of my girls in her first tutu, ready for ballet class.

Also tomorrow is Reagan's optometrist appointment that is giving me some anxiety.   We scheduled this appointment about 3 months ago when we noticed that her left eye seemed to be crossing a lot more.  I am hoping that there is an easy fix or that it's not big deal, but my gut is telling me that I am going to leave tomorrow feeling very deflated and upset.  Wish us luck!

To dream or not to dream?

I am generally not a person that does a lot of dreaming about life related things.  I am a realistic.  I set goals and accomplish them, but they are usually goals that are attainable, not ones that are out of reach.  Trust me, I am not saying that this is a good quality.  I graduated college with an Accounting degree, it doesn't get much more straight forward than calculating numbers on a spreadsheet.  And I love it the straightforwardness of what used to be my profession before I became a stay-at-home Mom (or domestic engineer) earlier this year.

But, lately I have found myself to be a dreamer.  I have met my match with Rett Syndrome because it is out of my control.  And that scares the begeezers out of me.  The only way that I have been able to cope is to dream that a cure is within reach, not only within Reagan's lifetime but sooner.  Like in the next ten years, but five would be ideal!  I dream that scientists are working hard, day and night, to make a difference for my daughter and all of the other girls (and boys) with Rett Syndrome.  I don't like dreaming.  I feel that I am putting so much of my happiness on this idea of hope.  There are times where doubt crosses my mind and I fear that we aren't as close to a cure as I think.  I fear that Reagan will never know the life of a typical child.

I had the pleasure of going to the Baton Rouge Spending Time Ending Rett benefit over the weekend organized by the fabulous IRSF Chairwoman, Kathryn Kissam.  I saw how compassionate people are about Rett Syndrome and finding a cure.  This event raised $200,000 for Rett Syndrome in one night!  In addition to being a successful fundraiser, it was an evening of awareness.  She played a recently released video that shows how Rett Syndrome affects the entire family and there was not a dry eye out of the 150+ people that attended.  Kevin Black had the honor of following up after the video and telling us how Rett Syndrome took his lovely daughter, Cortney, at the young age of 16.  He has been through all of our biggest fear and yet he still fights to find a cure for Rett Syndrome.

The next day I saw an email from the IRSF of a breakthrough by scientists.  The headline was that "Researchers Grow Rett Syndrome in a Petri Dish".  What?!?  This opens up the door for more testing and gets us one step closer to a cure.  Here is the article:  http://www.rettsyndrome.org/information-news-events/press-releases/researchers-grow-rett-syndrome-in-a-petri-dish.html

These two things were more to me that just great moments.  It was a sign that it is okay to be a dreamer and put my faith in a cure.

getting ready for school

Yesterday we went for orientation at the elementary school where Reagan is eligible to begin Preschool on her 3rd birthday, which is in February.  I use the word eligible because although we want her to start school for the social interaction and learning environment, we were not sure if this was going to be the right place for her because she has never been in a setting with several kids, other than the occasional play date.

The way it works when you have a special needs child is that they can receive Early Childhood Intervention (ECI) services (if they qualify, which means they need to be developmentally delayed) until the age of 3.  Through ECI they receive therapy services (speech, physical and occupational) where the providers come to your location (house or daycare) to provide therapy because it is an environment comfortable for the child.  Not all parents choose ECI services because some prefer to utilize private therapy companies.  However, ECI has been a lifesaver for us since taking Reagan to private therapy meant bringing along a newborn baby and now that Lauren is older, I don't have to worry about interrupting her naps.

On the child's third birthday, ECI services end and they are eligible for Preschool Programs for Children with Disabilities (PPCD).  The elementary school has a class designated for special needs children.  It is through this program that she will receive her therapy services.  The process to get your child in the PPCD program typically starts around 90 days from their 3rd birthday because besides the orientation, it involves an evaluation by the school district to determine your child's needs and the you have one or more ARD (Admissions, Review and Dismissal) meetings to develop the IEP (Individual Education Plan).  An IEP is just what it implies, a plan with goals and objectives for your child over the next year.

Now, back to Reagan.  She loved the class; I mean really loved it.  We watched her with bewildered faces because we haven't seen her that happy and excited in such a long time.  She walked really fast, squealing with excitement.  She went up to the children and teachers and smiled, her way of saying "hi".  She even might already have a boyfriend as one little boy kept following her around everywhere.  I am so relieve that this seems like an environment where she will thrive. 

I am really excited for the positive beginning and I hope the rest of the process goes just as smoothly.

Our story

I was looking back through the blog and realized that I just kinda jumped in to writing about Reagan and Rett Syndrome without providing much history.  Here is our story of how we came to Reagan's diagnosis:

Reagan was born a happy and healthy baby on February 24, 2008.  She was always smiling and was such an easy baby.  She hit her milestones within normal range for the first 10 months, but it was always on the later side of the range.  It was around 10 months that we started to notice that she was not hitting her milestones as quickly but mostly that she seemed to have no interest in stacking objects or putting things in and taking them out.   We voiced our concerns to her Pediatrician at her 12 month baby well-check but we were told not to worry, all babies develop differently.

We spoke to a new Pediatrician at her 15 month baby well-check visit because she had only just begun taking steps to walk.  She asked us if Reagan could follow simple one-step instructions, make hand gestures like waving, say words (she lost the only 3 or 4 words she had at 14 months), or mimic behaviors.  All of these answers were a "no" and we then realized that there was a big problem.  We immediately contacted Early Childhood Intervention and she began receiving services for Speech, Occupational and Physical Therapy and has continued since.  

Over the next 7 months we visited both a Pediatric Neurologist and Geneticist in search of an answer.  Three days before Christmas in 2009 the Geneticist drew blood to run a series of test ranging from an intolerance of foods to thyroid issues to Angelmans Syndrome.  We were even more stressed about finding an answer as soon as possible because I was pregnant with our second daughter and due in January.  We were concerned of a possible hereditary issue.  I received the phone call on a Friday afternoon, it was January 15th, that Reagan's results were positive for the MECP2 mutation and has Rett Syndrome.  The news was devastating for our family as we read online how it would change our daughter’s life forever, that our dreams for her future were not going to be realized.  But, it did not take us long to realize that she is the same precious, beautiful little girl that she has always been.

Tough love

Ms. L comes over to do speech therapy with Reagan on Monday mornings.  She has believed in my little girl right from the beginning and has been a great source of information and support.  We are currently working with Reagan choosing between two items using both her eye gaze and hand to "tap" the picture to let us know her choice.  Reagan has shown us that she knows the name of this game by choosing the correct picture when asked to show us her baby, ball, lovey, etc.  This girl, she's a smart one, but let me tell you she is also very stubborn.  I am still trying to figure out which parent gave her this great trait!

During the last session Ms. L worked with her to make choices between her toys.  Reagan fussed a little but played along.  After about 3 rounds of this choice making, she decided she was done making choices and had enough.  So, Ms. L told her that she could take a break and watch her favorite tv show but she would have to choose that as her activity.  She showed her the dvd case (which we know she understands) and her lovey and told her to make a choice.  This is when she really showed her temper.  Usually when this happens, I quickly cave because who likes to see their little girl unhappy?  In the past I have helped her by showing her what I need and then I turn in on, hoping that if we walk through it together enough, she would start doing it on her own.

But, Ms. L's philosophy is that Reagan has learned that she doesn't have to choose because gullible Mommy will give her what she wants in the end (tv) without working for it.  We endured 25 minutes of a screaming, crying, unhappy Reagan.  It was awful. Completely heartbreaking.  We continuously explained to her that she just had to show us what she wanted.  We let her walk away and she would always come back and just tell us how mad she is and then walk away again.  In the end, she ended up making the decision and the world was a happy place again.  Since then, we do this every morning and she has gotten much better about choosing.  It's hard to give tough love, to do things with or for your children that don't make them happy but you know will make them a better person in the end.

Listening to Ms. L give her instructions on choosing a toy

Playing with her toy after her decision 

Using great eye gaze and hand touching of the picture to let us know her choice

Lauren - 9 months

It is hard to believe that my baby girl is already 3/4 of the way to being a one year old.  She has such a sweet personality and is funny at the same time.  She constantly makes us laugh with the new noises that she makes or silly faces.  I often sit and watch her in amazement.  I had no idea that accomplishing milestones could be made to look so easy.  A friend who has an older daughter with RS and a younger child that is typical told me that watching her younger child grow up is like having a first child all over again, and it is so true.

showing me her "stinker" face

swim class

bravely jumping off the side ledge

intrigued by pig at 1st trip to the zoo

loving her new lion

Where is Ms. Giggles?

I searched through some old blog posts, searching for a previous entry, and stumbled upon a video (click to view) of Reagan jumping on her mini-trampoline in February, an early 2nd birthday gift.  We used that exact same trampoline today for her physical therapy session.  The toddler in the video seems like so long ago, but it's only been a little over 8 months.  Yet already Rett Syndrome has taken away so much from her.  The thing that I miss the most is how happy she used to always be and a giggling ball of sunshine.  It is so rare lately that we hear her giggles anymore or that she seems truly happy.  If she is having a really good day, she'll give us smiles and maybe a giggle.  She will come over to us and acknowledge us more, but most days she seems so indifferent.  I hope that this stage of Rett Syndrome ends soon and our happy little girl will be returned full of smiles and laughter.

Trick or treat!