2013 here we come!!!

smile!!

"If you smile at me I will understand Because that is something Everybody everywhere does in the same language"

changes....

There has been so many changes with Sorel since the day she was diagnosed, since the day she was born and in the last 6 months. With Rett Syndrome there are constant changes, sometimes its day by day and sometimes its moment to moment. We watch our daughters constantly, a holding of breathe a change in breathing pattern, a flicker of the eye "is that a seizure?", we worry about her tone, we worry about breathing we worry about swallowing its just a part of our Rett Syndrome life, face it we all have a few more grey hairs and some definite wrinkles! That said, there are a ton of decisions us "Rett" parents never thought never wanted to make for your girls. I for one hate having to choose to put my daughter on medication for seizures, and now choosing a different med and not really knowing if it will do any better. We were always so worried about Sorel having seizures and then she had a week with some definite episodes then some definite seizure activity but we did not ever definitively get a video EEG of them, but the neuro did say they were seizures, started her on meds and wallah she hasn't had any. Good right? Well, then there is the side effects, some anxiety, hyperventilating or is that just Rett, ugh! So we agree to switch meds and see.....do I second guess myself, yah of course, do I worry, hmmm, yep!

Since the day Sorel went through regression she has hand mouthed constantly, she has worn braces on both arms to help with the hand mouthing and to try and get her to have more control over her hands, the moment you would take them off back in her mouth they would go, talk about frustrating! About 4 months ago Sorel started having these breathing episodes, breathholding, hyperventilating, stuff that, yep, worried us! But she all of a sudden stopped putting her left hand in her mouth, bittersweet right?! And now all of a sudden she has stopped with the right, its crazy! She no longer has to wear her braces, maybe her right every now and then but rarely. How does this happen? How does one thing like breathing patterns cause something more positive, or maybe its just a coincidence. All and all I guess what I'm trying to say is that there are changes some sad like her regression, diagnosis, hand mouthing, seizures but then there are these moments that change is good, change is light and change brings joy and mostly hope!

looking back...

As I was watching Sorel today in OT I went back a few years in my head to where we started our journey with Rett Syndrome. I think of all the things Sorel couldn't do, the things she would never do, the overwhelming sadness of it all. She could barely sit on her own, would topple over, could no longer feed herself, constant hand to mouthing, she gagged on food and we were constantly worried about her choking. Being our first child and not knowing much different it kind of became the norm for us and we eventually got into a groove. But outings to friends homes, parks, beaches, wherever there were other children running around doing the typical things children do was like a knife in our chest, sometimes we would come home put Sorel to bed and just cry. Flash forward to today, I'm watching my now first grader in therapy and I am in awe of home far she...we have come. What may seem so simple as a movement of one part of one muscle, a neuron firing that may not have been before is so so so huge! I look at her rolling on the floor with the help of her therapist, throwing her legs and arms with purpose trying to do the things she knows we want her to do. I look at her right arm still braced but no longer needing the left arm brace as her hand to mouthing on that side is gone....again so so so huge! What may seem so simple to most is so grand in our Rett world. So baby....you have come a long long way, you amaze me each and everyday, your strength although not physical is massive, your glow is brighter than the sun and you continue to teach me each and everyday.....I love you!

"The mind determines whats possible. The heart surpasses it"

All I can say is she's amazing!! She has more heart, more courage and more strength than I do myself....love you daughter....you are an incredible inspiration!!

Sorel and her friend Cristia Isabel.....

Its always so nice seeing our extended "Rett" Family and all the other amazing little Angels. Sorel and Cristia Isabel look like sisters don't they? What a connection these two have....miss you guys! xoxoxo

simply beautiful!

today Sorel got to show her teachers and staff how she uses her computer, we are working hard on getting it up and going in school and familiarizing the staff on how to use it. I wish I could say that this has been an easy task so far but it certainly has not.