Sorel Sofia Kolendrianos

smile!!

2012-01-18T21:15:00.000-08:00

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

changes....

2011-10-20T12:16:00.000-07:00

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...

2011-09-21T21:15:00.000-07:00

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"

2011-08-29T14:08:00.000-07:00

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.....

2011-04-30T20:38:00.000-07:00

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!

2011-04-27T22:01:00.001-07:00

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.

visit with uncle jay

2011-04-22T22:10:00.000-07:00

so Jason and Jill are Xander's godparents, nona and nono in greek, and Jason is like a cousin to Chris as their families have grown up together. He and his wife, jill, had Sorel in their wedding as a flower girl....you can not imagine (or I'm sure you can) how much that meant to chris and I to see her all dressed up rolling down the Isle before the bride, nope no tears in my eyes! Anyhoot, I just want to dedicate this post to Jason and Jill, for the beautifully souled individuals they are, to how honestly and whole heartedly they love our children, and to our continuously growing bond of friendship......we love you both!!!

never lose your smile baby......

2011-04-12T22:01:00.000-07:00

I was so worried......

2011-04-12T21:47:00.000-07:00

I couldn't keep my eyes off of her.....didn't feel comfortable turning away for a second.....

2011-04-06T22:23:00.000-07:00

been a rough week for us as it has been confirmed that Sorel is now having seizures, they are calling them partial complex seizures.....we started medication on monday and she has not had one since....crossing fingers.....just one more bump in the road on this path we walk with sorel!

Sibling Love!

2011-04-06T21:00:00.000-07:00

Sorel took first place at the "Hearts" horseshow!!

2010-06-20T07:41:00.000-07:00

Welcome Baby Xander!

2009-10-05T13:24:00.000-07:00

Sorel's little brother has arrived, born September 1st, 6lbs 9ozs, 18 inches long. Sorel is so excited to be a big sis!

Family

2009-08-18T09:11:00.000-07:00

Our first real family photo-shoot with my good friend and amazing photographer, Lisa Willis....Thank you Lisa for taking such beautiful photos of us and my expecting belly!

2009-05-14T13:17:00.001-07:00

Sorel's first Horse Show and she won second!!

2009-05-11T19:33:00.001-07:00

Getting so strong!

2009-03-25T12:32:00.000-07:00

Hanging out with my friend Todd doing some walking!

2009-01-08T20:55:00.000-08:00

Sorel's Christmas Photo shoot

2009-01-08T20:52:00.000-08:00

Progress!

2008-11-17T19:40:00.001-08:00

Its been a while since I've written anything on Sorel's progress and thought I'd finally take some time to update all of you who love her so much on how well she is doing. We started preschool, she is in the inclusion program with 2 other special need kids to about 14 typically functioning 3-5 year olds. She loves it and the kids love her! She is the only child who is non-ambulatory but the kids love her purple wheelchair, though she's not in it much. The teachers are making her take steps to and from all activities and working on getting her to use her hands more. It amazes me that although Sorel does not have words she speaks to these kids with her amazing smile and laughter. They actually fight over who gets to hold her hand to music class or sit next to her in group time....yes there were definitely some tears shed but happy ones. I can't tell you how relieved Chris and I were to see the other children react this way, it is so incredible, I cry just thinking about it! We also have started Hippotherapy and can't wait for our next lesson! Being on an animal so big will only improve Sorel's core strength and help her become more stable. She will also take steps across the room, fully supported, but its along way from not even bearing any wait on her legs. You can actually see her little muscles, its so beautiful. Our big excitement this last week was the fact that she started sucking out of a straw, this is huge! We've been practicing in therapy with juice, water and milk but she never seemed to get the hang of it and just wanted it from her bottle...well, I decided to pick up one of those chocolate soymilk boxes and wouldn't you know it she started sucking from the straw....its like she was saying "hey mom its about time you figured it out and got me some chocolate milk!" ....hilarious! Chris and I have been laughing tears at how beautiful it is to see chocolate milk come up the straw and into her mouth and the enjoyment on her face, just perfect.

We continue to get PT, OT, speech and communication therapy along with hippotherapy and getting her in the pool whenever possible. Nope we aren't busy at all.....hah!! I can't tell you all the excitement we feel in the progress she has made, it may be small but its oh so huge!!!

I love my Mommy!

2008-11-17T19:39:00.001-08:00

I love my Daddy!

2008-11-17T19:36:00.000-08:00

Hippotherapy!!!

2008-11-11T20:28:00.001-08:00

Uncle Basil and Sorel

2008-10-07T21:02:00.001-07:00

Trip to San Francisco to see the doctors at the Katie Clinic, Sorel loved staying with Uncle Basil and seeing the city!

2008-09-17T21:43:00.001-07:00

East Coast Trip

2008-09-17T21:43:00.000-07:00

Grandma's visit....

2008-09-09T17:16:00.001-07:00

Grannie Annie came to visit and we spent the night in Los Angeles....fun!!

Photoshoot with mommy....

2008-09-09T11:31:00.000-07:00

Wanted to share a few photos from our shoot out at Ellwood Mesa. Sorel had so much fun and was just beautiful.....

Benefit Luncheon

2008-09-09T11:01:00.000-07:00

On Sunday April 6th, Saint Barbara and the Philoptochos Society hosted a Benefit Luncheon for Sorel, it was just beautiful to be surrounded by so many caring hearts and ongoing prayers.

To all the Dear members of Philoptochos and Saint Barbara,

We cannot adequately express in words the enormous gratitude we feel to the generous members of Philoptochos for Sorel's beautiful Benefit luncheon! We are humbled by the extraordinary outpouring of love and support from Philoptochos and all our Saint Barbara family and friends and grateful that our amazing little girl, our little angel, has touched your lives as well.

Decker's Sample Sale

2008-09-09T10:48:00.000-07:00

Thank you to Connie Rishwain and the entire Deckers, Simple and Ugg team for the incredible effort you all put forth in raising funds for Sorel Sofia's medical fund. Sorel had such a blast checking out the hundreds of pairs of shoes! We can not thank you enough for your generous support, genuine compassion and love.

2008-04-25T20:14:00.000-07:00

Update on my progress...

2008-03-19T09:01:00.000-07:00

Sorel is now bearing weight on her legs and standing in her stander or with support from us. She loves standing which is so great because she never like to bear any weight before. We continue to put her on the treadmill in her harness and she actually moved her feet twice on her own! She still wears her arm braces to discourage her hand to mouthing and to help her have greater purposeful hand use. She has actually started to grasp my fingers and stand up from seated, if we can get her to maintain her grasp there is a possibility that she could use a little walker when she's ready! She is babbling all the time and still that happy girl full of smiles. We are working on communication and soon will be getting a communication device to encourage more independent decision making. Her voice is still so beautiful and the little sounds she makes or the occasional word that pops out is music to our ears.

We recently took a trip to Oakland to become part of the research and learn more about Rett. We met about 20 other beautiful girls affected by RS and were amazed at how well most of them our doing. We met incredible moms and dads who have given us so much inspiration and a wealth of knowledge. There is definitely an unspoken love between us rett parents, I mean how many people can feel so much love and compassion for a complete stranger and yet know everything thats in their heart.......we are definitely not alone!

Slideshow

2008-03-18T20:27:00.000-07:00

2008-03-18T20:14:00.000-07:00

A night at the Wild Cat!

2008-03-18T20:11:00.000-07:00

What an amazing night at the Wild Cat. It was so great to see so many people come out in support of our little girl.

Thank you!

Treadmill

2007-12-13T20:30:00.000-08:00

We've been doing some treadmill therapy, at first Sorel did not care for it much but now.....well....she's gonna be a runner just like mommy!! Sorel's therapist, Nicole, controls her legs so that she gets the feeling of moving them. She sometimes will push herself but for the most part its just getting her legs feeling the rhythm with the guidance of her therapist. Margaret the OT therapist was playing the piano and singing and making Sorel laugh....they are great!

In Reflection...

2007-12-13T15:25:00.000-08:00

Hi everyone! I just want you all to know how extraordinary Sorel really is. She is the most amazing thing in our whole lives, she is what we wake up for and fall asleep thinking about. She has a smile that can melt the coldest of glaciers, eyes that can see the oldest of souls and laughter that is more beautiful in song than a Beethoven symphony. She is the sweetest of souls the love of our lives. I am so grateful for her, for her constant inspiration, for the strength in her legs that pushes her everyday for her voice that once made words but hasn't forgotten, for the way she looks at me and all I see is a light that fills the whole room, a flood of love that pours from her heart and lifts me up.....yes SHE lifts ME up! Amazing!
I will never take for granted the smallest of joys that come from this path we walk with our daughter.

Thank you all for your continuous support!

My 2nd Birthday Party!

2007-11-15T22:14:00.000-08:00

I had so much fun at my birthday party! I rode my first pony and loved every minute of it! Daddy helped me hit the pinata which I thought was really fun. Thanks everyone for coming, can't wait for next year!

2007-11-08T20:35:00.000-08:00

Today we had therapy with Margaret and Nicole, Auntie Alexandra came to watch and learn from the therapist. Sorel is doing so great, with her braces she is using her hands more and is getting stronger. She is showing her indurence in each of her positions. She has the will and we know she will succeed! Love this girl!!!

I'm two

2007-11-02T18:38:00.000-07:00

Today I turned two! I had a great day with my grandma and grandpa, papou, auntie Lex and Uncle Mike, Yia Yia, grandma Jill and grandpa bob and of course mommy and daddy too. We had pizza and cupcakes and I was in heaven licking the icing off my fingers!