Hi everyone! Wow! Two years without an update...

8 years have passed since Chloe got sick but her spirit grows stronger and spunkier as she gets older.  Two years ago we wrote to you about her seizures presenting problems.  Back then it seemed that her seizures had grown bigger and lasted longer than any other time we could remember.  They were causing her to shake, extend her limbs in a stiff manner, become irritable and cause her to cry from being frightened.  It scared us!  Therapists were concerned about her behavior and refusal to work, and teachers expressed concern of her alertness and willingness to participate.  This wasn't an easy time and we fought hard to make everyone see that this was not her usual self and begged them to keep going and NOT give up on her.  We have never walked away from a challenging time and we were determined to find her some peace so that she could shine and smile again with ease.

After some time, we decided to introduce the Ketogenic Diet again and increase her medicine. As she adjusted, we insisted that her therapy and school team work with us to make her comfortable and keep trying different ways to ease her.  Within weeks, we received a phone call sharing the positive strides in her demeanor and alertness.  Therapists were asking to extend her sessions and co treat again as a team so that Chloe would benefit from different disciplines simultaneously.  Follow up phone calls and visits to Chloe were met by staff members sharing stories about how she was behaving differently.   It seemed that Chloe started to track (follow) people's movement better with her eyes.  Stronger prescription glasses also helped her to focus and participate more.  She was attentive and involved with her surroundings.  She also enjoyed more cuddles and play time on the mat.  Even better, she was allowing her cochlear to be placed more and more and recently started turning to the sound of her name or to the sound of a familiar voice. Chloe has always been a people person and loves to interact so her ability to show and acknowledge that she recognizes you or your voice is a very proud moment for all of us.  The absolute best part of all this are the smiles and giggles she now shares.  More and more, we catch her staring and then suddenly opening her mouth to give us a big gummy smile like she did when she was a baby.  Suddenly, it seems as if she notices - her eyes grow big and her smile grows wide. Sometimes, we'll even get a giggle.  At times, her giggle has even grown to a full blown deep belly laugh and we just melt!

Another exciting step for Chloe is that she now attends an off site special needs public school.  A year or so ago, Chloe and her friends lost their school space on hospital grounds and have been receiving school instruction solely on their unit in the common area.  It was not ideal as it was a small, shared space and the children rarely left the floor.  With the encouragement and support of her social worker, we were able to file papers for her to attend a neighborhood school that would provide all necessary services for her.  Since September, she has been riding on a bus to her new school and enjoying 'normal' school life.  It is a bright and beautiful space with a small ratio of teachers to children.  Two full time nurses are available throughout the day so we know she is cared for and kept safe.  Chloe also takes advantage of recess and social time with her classmates during lunch.  Music, art and physical time are all a part of her day now on top of her regular grade instruction and therapies.  We are thrilled for her to have this school experience so that she can explore outside the hospital, socialize with new friends and interact with the world around her! 

Thank you everyone for being patient with updates.  Two years is a long gap but I feel that we have kept in touch with many of you through face to face interactions, phone calls and social media more.  It has become easier for us to talk about our experience and our day to day as we accept Chloe's illness as a part of our life.  For me, I know, this was one of the hardest obstacles. I struggle with introducing myself as a parent of three when one is clearly not visible. I question how to approach labeling her a severe special needs child.  I make myself very vulnerable to opinions and judgments when I share that we have chosen to place her in a long term facility.  I agonize, still, over the guilt we have for what could have been our life without illness.  These struggles are still very real but I've learned to not hide or cower away from the difficulties of these topics.  I have learned to accept my role as a parent of three beautiful child for whom I fight for in every possible way.  

These past couple years that we may have been absent from the blog world did not pass without growth.  All five of us have healed in many different ways.  At home, we respect that  each of us are at various stages of understanding and accepting a different kind of normal.  We realize that each of us has obstacles, and taking the time to really listen to each other this past year has really helped us to move forward as we question, advocate and support one another to heal.  It has been a time for us to be more open with each other about our feelings over what has happened and, more importantly, allow the kids to feel welcome in these conversations and help them make sense.  Life has adapted to new routines and different types of bumps in the road but we manage to get through it together.  Olivia and Jackson continue to visit Chloe often and love to read to her, play with flashlights and tactile games and take her for wheelchair laps around the unit floor.  They are quite a team of siblings.  They are forever in love with her and shower her with so much affection.

Thank you always for keeping in touch with us.  We continue to be humbled by all your acts of kindness and support. 

Much love,

Michelle and Rethier