Easter Egg Hunt: Elle Style

 






We went to the neighborhood Easter egg hunt yesterday morning.  They had the hunt broken down into age groups, having each different age group on a different neighbor's lawn.  We started at the ages 18 months to 3 yrs lawn and Elle was in her stroller.  When they said go, all the other kids Elle's age started collecting eggs in a little frenzy, and I watched Scout struggle to push Elle's little stroller through the grass and collect eggs for her and put them on her lap so she could participate too.  Scout even made sure Elle got a thing of bubbles cause she loves them so much.   It was a sweet sight watching them, thinking about the years to come and what an awesome sister Scout is going to be and how much Elles needs her.

It's Rett

I got the call from Elle's geneticist yesterday, they finally found something in the latest test.  Our sweet little girl has a "rather unique mutation" of the Rett gene.  So now we know.  The search is over.  Can't say we are surprised, but I am rather shocked at finally having an answer.  We know very little right now, Dr. Carey is arranging a meeting for us with him because he wants to go over these findings in person with us.  We will know more in a couple weeks.  Crazy!

Thanks for all the support and love we have felt from family, friends and strangers.  You all make this journey easier and thank you Elinor, for being the sweetest, brightest little star in our lives.  We couldn't love and adore you more.   We are so grateful for the honor of having you as our daughter, you truly are a special little girl and enrich our lives in ways we never dreamed.

GO!!

Thought an Elinor update was in order- it's been awhile. 

She is actually doing awesome.  We are all very impressed with her this last month.  Here are some things she is doing:

-Sitting up straighter more consistently (her little hunch while sitting on the floor is sometimes gone completely - but sometimes it's as bad as ever). 

-Her left hand is at least participating in feeding time a little more.  It has made the stride of dipping it in food and squeezing it a little.  A year ago, that same hand was outstretched and put toward her back as far from the food as she could get it while she ate.  So this is major progress.  When she dips it in food, I am supposed to bring it to her mouth to eat whatever is there, teaching her eventually how to eat with it by forming that pathway to her brain.

-She is beginning to learn how to drink from a straw.  We have a little bottle straw thing that allows us to squeeze the juice up most of the straw to have it be easy for her and learn better how it works.  This is key, because she is seeming less and less enchanted by bottles these days and we are going to eventually need another way to get liquids in her.

-There is a general feeling that she is more engaged with her surroundings and what is happening in her world.  Toys are way more exciting and this is great news, because before, she barely cared about toys, and getting her to be motivated to play with  a toy goes a long way in helping her with her therapy.

-Her standing is getting really good!  Most of the time that I get her feet around the ground she will put weight on them (as opposed to not very long ago, whenever she would sense the ground near her legs, they would curl towards her body like a dead spider.  The physical therapist is leaning towards getting her some braces to make sure her feet and ankles are straight.  She would only wear them when she is going to be using them to stand, we want to stay away from full time braces, most because it causes laziness in the muscles and we don't want that.  But we do want her to have her feet straight when she stands.

-She started back up with Courage Reins (classes ended early December, so she has had a long break).  The last month of classes, she would start to cry midway through and would cry the rest of the ride.  It seemed to be when she started getting tired.  We have had three classes so far this year and she has loved every minute of her rides this time.  I think it is attributed to her growing trunk strength which is an exciting change to see- affecting many aspects of her development.  She is loving it so much and doing so well, this week they gave her an extra long ride.

- Speaking of Courage Reins, this is the most exciting thing to me- she seems to be signing "go" (or doing an Elinor version of go).  At Courage Reins, they stop the horses a lot and make the kids sign "stop", then they make them sign "go".  The lady in charge has been telling me the last two weeks that Elle is signing go and she would flap her hand imitating what she is doing (they are too far away for me to make this out myself).  I would smile and be a little hopeful, but the sign seems to just be something Elle's would do anytime- I mean Elles flapping her hand......yeah, not a strange sight.  So I was skeptical, but told some of her therapists that they think she is doing it at Courage Reins.  Well yesterday at motor class, one of the teachers was bouncing her on a giant ball to build a little trunk strength and it reminded me of the horse back riding, so I told him about her alleged signing.  He said, well lets try it out and stopped bouncing her.  Then he would say GO and sure enough, those little hands flapped for a second.  Then they would bounce and he would stop and they would do it over.  She did it all four times!  I watched.  The last time, he didn't say go, just stopped and watched her.  She hesitated for a second and then sure enough, one little hand flapped as if to say, "come on!  Do it again!  GO!"  So he did.  It caught the attention of some of the class and we all watched it and everyone was excited and proud of her.  It was a big deal!  My little girl signed, "go"!!  Mom is a believer now and I am so incredibly proud of her.

Go Elles, go!