We are officially busier than ever and with a new baby on the way I'm admittedly panicked about the future.  I know we can do it... I know we have an amazing family that is there to support us... but there are days when Cecily has rough patches when I worry more than one could ever imagine! 

Over the last 6 week period I counted that Cecily had more than 50+ appointments...a normal week is about 5-6 ... but when you add on all the assessments she needed for school (yes - Cecily is already getting ready for school!) and her medical appointments which were intensive this month - it has been truly insanely busy.  We have been making almost daily trips down to Radys...  We're grateful that we have amazing insurance and an equally great medical team but there are times when I am balancing more than one should and I'm praying/hoping something does not fall off the plate.  (alas it does... but hopefully the less important stuff!)

We are nervous about her IEP on Friday... but we are equally optimistic about the next phase for Cecily because she LOVES kids and while I'm not ready for her to go to school (not even for a few hours a day)... I have a feeling she is more than ready.  She loves playing with Noah - and she loves playing with Noah's friends at his pre-school... so I am sure playing with kids at her own school would be a dream come true.  We'll be giving an update on her IEP next week.  My goal is not to cry during the session... I only cried at one assessment (cringe!).  It is just so hard to explain what your child is not doing... and the process is very deficit-based.  For our family we ONLY focus on what Cecily is doing because 1) we are proud of her and how hard she works to do what we take for granted and 2) it is a better way to live in general.  This process (while the team has been so lovely and amazing and supportive) has been emotionally draining for me.  I want the assessors and everyone to know what a gift Cecily is and that she is so much more than a checklist of tasks.... and that her cognition transcends whether she can stack blocks, or hold objects with the correct grasp.  (lalalala... rambling away here!)

The good news is after a rather rough month Cecily seems to be in a much better place.  She is getting so physically strong and she is showing weekly progressions.  This week she began giving everyone the high-5!  This is a gift because 1) we love interaction and her response and 2) it is helping her over-come her aversion to people putting their hands on her hands.  Noah loves it and we've been able to starting playing the "buzz" game with her... something we've done with all of the babies in our extended family and it is even more fun to see how much Cecily likes it, too.

Noah is getting very excited for baby Cason's arrival.  He thinks my body looks funny and he likes to feel Cason kick when he pushes on my belly.  He can't wait to have a baby brother and I just hope his enthusiasm survives those first few weeks at home when you're sleep deprived, exhausted and perhaps playing soccer into the dark hours is not first on your list of fun things to do!  

We've got some exciting things for Cecily's Closet brewing.  We've got a room makeover next weekend for a lovely little girl and one in early March for triplets! Can you imagine having triplets? I can't imagine having typical triplets let alone three children that require extra special care.  We can't wait to share the stories of these inspirational families.  We are also very thrilled with some new folks that have reached out to help us manage Cecily's Closet.  We're realizing we are going to have to delegate a lot more in the coming months to keep up with all the requests.  Thank you to the amazing people who have offered to help us try out new ways to scale our operation.  We're looking forward to letting go of the reigns a little and seeing how it goes!  

To those that have asked... no we have no intention of stopping with a new baby. Will there be an adjustment period? Most definitely. But where there is a will there is a way.  We are committed to helping make our little community in San Diego a better place for children with special needs.

Onwards and upwards!

I'm a talker. I like to write. I have relied on these forms of communication for most of my life.  Even as a young child I used to spend hours writing stories either by hand or using  animated programs on my Commodore 64.... My husband thinks I'm a chatter-box. I am sure there are days when he wishes he could unplug me...

Our family is now embarking on a journey together as we explore the world of alternate communication.  We are learning that while words are powerful - there are so many wonderful ways to communicate.  Our little angels, Cecily and Noah, are both very skilled at communicating their needs with and without language.  In the last month Cecily has embarked on another cognitive awakening.  She is truly communicating with us! She is expressing her needs and she is so proud of herself that we finally "get it..." I think for the first time ever we are truly able to understand what she is asking for and what she wants because we are following her lead and watching intently at what her little hands are saying...

We are uncovering the power of sign language, gesturing, facial expression and more. It is more than words.  It is a dream come true for me. I have a very special and unique bond with Cecily. I can't explain it when teachers, therapists or Doctors ask me simple questions like - "how do you know she is happy? how do you know she is tired or having pain." I just know! Or so I thought I did.  But now, for perhaps the first time I feel confident that Cecily is communicating her needs so they are met.  It may seem simple to many but Cecily never pointed at things.  She wouldn't reach or identify an object by the touch of her finger. We would follow her eyes and listen to her breathing patterns to see if she seemed excited, scared or happy. But now... all we have to do is look at her hands! I am elated with her progress. I am so proud of her achievement. And as a Mommy I am just so thrilled to be able to connect with my angel in a totally new way.

We know this is just the beginning! But we can see the glimmer in her eye and the smile that lights up her whole face (and ours) when she signs something and we acknowledge her need/want and her achievement.  This week alone she added more and more words to her arsenal... She may not always sign it "by the book"... (And Noah is quick to correct a sign...) but she is doing it!  And we are looking forward to the next phase as we uncover the power of sign and unlock the secrets to Cecily. 

And a big thank you to my friends and family who have jumped on this bandwagon and have started to learn some signs... I am so grateful.

Tonight at dinner Brien snuck away from the table and I could see him eating a mint cookie.  When he walked back to the table Noah (radar-vision when it comes to food) asked Daddy what was in his hand.  He said broccoli... Yes, a white lie but he bought it.  Cecily looks up at Daddy and signs "want cookie!" Was it an accident? Perhaps. But was it priceless!  Yes it was.  Noah quickly pointed out that Cecily wanted a cookie...I looked at Brien and we smiled. 

Onwards and upwards!

This is a re-post from San Diego Family Magazine...
The Autism Society of California has created a survey that they hope will be the largest survey done in the state to help identify the needs of individuals on the spectrum and their families.   

Emily Iland, President, Autism Society of Los Angeles, has asked us to help get the word out about the 2012 California Autism Survey.

"Your help is needed! Please participate in the 2012 California Autism survey, the largest, most comprehensive survey of families and individuals with ASD in California history. It will gather perceptions and experiences relative to the education and services an individual with ASD receives across their entire lifespan in California. The information received will be used to assist the State of California in becoming more responsive to the needs of our community during this turbulent financial time. The survey takes about 15 minutes to complete and is located on a secure server to ensure that the information collected will remain confidential. We are asking that the survey be completed by January 31, 2012. The results of this survey will be published on our website at www.autismsocietyca.org by mid-March. Parents and individuals will be given the option of providing their email address so they may receive the results directly as well. Thanks for your participation!" 

English Version: https://www.surveymonkey.com/s/VBYVNHT

"Si vive en California, invitamos su participación en la encuesta más grande hasta hoy sobre autismo en California. Enfoca en las necesidades y experiencias de los padres y los individuos con trastornos del espectro de autismo en cuanto a la educación y los servicios durante toda la vida. Los resultados se informaran a la política para ayudar a nuestro estado a responder mejor a las necesidades, aun en esta época de problemas financieros. Es muy importante que muchas personas participan en esta encuesta. La encuesta está disponible en español o inglés, dura a eso de 15 minutos, y está localizado en un sitio confidencial. Hay que completarlo antes del 31 de enero, 2012. Los resultados serán publicados en el sitio de web www.autismsocietyca.org en marzo. Los padres e individuos también tendrán la opción de proveer su dirección de email para recibir directamente los resultados. Favor de responder y compartir esta informacion. Mil gracias." 

Español: https://www.surveymonkey.com/s/LC3LRQZ  

Emily Iland

President, Autism Society of Los Angeles
Autism Society of Los Angeles
8939 S. Sepulveda Blvd. Suite 110-788
Los Angeles, Ca 90045
(562) 425-9555 

Sharing this in hopes of spreading the word.

Onwards and upwards!

I am sharing a note I received from the family who received the first makeover from Cecily's Closet. 

Please help me make a difference in the lives of San Diego families living with autism by joining my team as we run and walk in support of children living with autism at the San Diego Race for Autism!Once considered rare, autism now affects as many as one in 110 children in the United States. Every 20 minutes a child is diagnosed with autism. And every step in the Race for Autism represents one of more than 7,000 children with autism in San Diego. Make a difference by joining us in Balboa Park on March 24!All proceeds of the Race support much-needed LOCAL programs, services and classroom materials to improve the lives of those with autism in our community. Thanks to the participation of people just like you and me, NFAR has funded 38 community programs and 254 teachers grants throughout San Diego, benefitting thousands of local children. For more information visitwww.NFAR.org.

Be the Missing Piece! Join me in raising awareness and making a difference.Together we can race for their future as we Race for Autism.

Thank you Paola for being such an advocate for your children and an inspiration to Moms and Dads of children with special needs.

Onwards and upwards!

2012 is off to a great start.  Sure, we may have had a hospital stay to add to the medical records but that can't compete with the list of accomplishments our precious little angel and patient big brother are racking up!  Where to start?

Cecily is pushing her little chair around the house and will now walk if you hold both of her hands! Walking!!! Noah was so excited for Daddy to come home to see it.  We had a family breakfast with Grammy and Grandpa and Grandpa Bob and Cecily showed off her new skills. I couldn't have been more proud.  And I was equally proud of Noah for cheering the loudest and giving her such big hugs for her amazing work.

After falling back on her eating Cecily is again back to taking tastes via mouth.  Over the last few days she even signed that she wanted more! And speaking of signing... Cecily is using her signs more and more to communicate her needs.  The other day instead of a tantrum when I tried to leave the playroom she signed Mommy play with me.  :)  Yes!  Today she signed a few of the pictures in the book we were reading and we are rejoicing at every word. 

And then there is Noah! He is always the little ham of the house but he's taken to dancing with a guitar to make Cecily giggle and it works.  He is always down for physical comedy and Cecily finds him giggle-licious! Watching these two laugh and smile and enjoy each other is simply priceless!  (We are also proud of Noah's latest monkey bar accomplishments...)  He is our monkey and we love him for keeping us on our toes and reminding us not to take ourselves so seriously. 

January has brought some wonderful things for Cecily's Closet, too.  We've had more and more people reach out to us and share their stories with us and offer to help. We are overwhelmed. We are so grateful to all the amazing people we have met via email recently and we look forward to getting to know you better in 2012.  We know that in order to keep Cecily's Closet at a steady state - and to grow - that we will have to learn to delegate better.  I'm admittedly not very good at that but it is NOT because I'm a control freak.  (Yes, I standby that statement).  It is merely because I feel guilty when I ask others to do stuff and sometimes I'm unsure how to pass the baton on these projects where we seem to be involved in every aspect, angle, step etc.   But... our goal for 2012 is to learn how to accept help and to delegate so we can help more families and ensure that our own little family remains priority #1.  With the upcoming birth of Cason we want to have 2012 planned for Cecily's Closet so we can meet our objectives and not kill ourselves in the process.   

We'll be putting our efforts into the 3 main areas of the charity:

Room Makeovers - trying to do at least 10 in 2012
Belly Bands - growing this operation and we're committed to keeping these bands FREE for families in San Diego thanks to our growing army of local sewers
Equipment Recycling - growing this operation and using a parent to parent connection to facilitate the equipment exchange

We will keep our Adopt-A-Family Program for the holidays but we will limit the amount of gently used toys and clothes that we accept in the non-holiday months because we feel that aspect of the charity is harder to scale and we want to focus on our core mission.

We are so grateful to Beverly for her recent delivery of belly bands! We are loving the new denim! We are grateful to Suzy and all of her contacts that provided great stuff over the holidays!  We are grateful to Beach Bungalow Designs for putting us on their home page and for the recent referrals!  Thank you Jeremy for the beautiful ottoman! We are grateful to the strangers who have reached out and asked how they can help and to those that have shared our story with their book clubs, bible groups, friends and co-workers.  Cecily's Closet is a community of volunteers, Moms and Dads, friends and family that believe together we can make a difference in the life of a child.  Isn't it amazing what we can do if we work together?

Thank you for making our dreams come true for Cecily's Closet. 

Onwards and upwards!

This blog post is late as I didn't get the room posted quickly this time... life has been busy! 

This is Baby M's new pink room  - which we're calling, "balls of fun!"   Mom tells us that the fluffy pink rug and lanterns all over the ceiling were a big hit!  We've been eager to try something different like this in a room where a mural and or paint was not possible.

Thank you to the amazing new team of volunteers who contributed to this amazing space.  Please learn more about Baby M's story and see how her spunky spirit fuels everyone around her.

We absolutely adore this family and everything they stand for.

2012 is off to a great start for Cecily's Closet!

Onwards and upwards!

Just a quick note to say we are home and more importantly Cecily is happy.  We are grateful for the love and care she received from her friends at Rady Children's.  We are looking forward to a better week and lots and lots of cuddles at home.

Noah missed his Cecily and Cecily definitely missed her big brother.  Thanks to my family for the food-runs at the hospital and for helping out at home.

Onwards and upwards!

Almost one year to the day we are visiting our friends at Rady Children's Hospital in sunny San Diego.  On the bright side - it means our little angel was hospital free for any overnight stays for almost one year.   On the not so bright side, our  little one has had a rough few days and I have a new appreciation for how challenging it is to have a toddler confined to a crib that looks more like a cage than a place of rest...

After a rough start to 2012 - the Doctors decided that we'd tried everything we could do at home and it was time to admit Cecily so they could run some more tests and rule out anything major that could be causing her such distress.  It is hard to see our happy little girl scream in pain and to have no idea what is causing it!  Normally I blame her GERD... but this time I wasn't so sure because with the absence of her Topamax we've seen some new and exciting (and some not so exciting) developmental and behavioral stuff happening at home.  Could it be that the Topamax had masked a lot of Cecily's pain and she is now experiencing her world in a much more instense and likely overwhelming way?  Or is her tummy trouble to blame for the increased episodes of pain?  Oh how I wish I had the answers and the magic meds to make her feel better.  What made this even more confusing as a parent was these episodes would often be flanked by periods of normalcy or even great new developments!  She is always keeping us on our toes!

I decided to write this blog tonight because I'm always positive and today I found myself looking everywhere for the silver lining and I couldn't find it.  I was having "one of those days"...  Cecily refused to sit in her crib, or to sit anywhere except in my arms - and I had to be standing! Yes, she is a princess but how do I refuse my little angel when she needs me most?  Today I found myself more tired, more exhausted and more stressed than usual.  There were a few times when I just had to put Cecily down in the crib and let her cry a little because my increasingly pregnant belly and back were about to break.  (And for those of you that know me well you know I can't stand to do that!)  I just needed a rest and I was feeling very guilty for that fact because I am 100% sure that Cecily's pain is 10x what I was feeling and it is not about ME!  So why am I writing this?  Because I always promised to write this blog with honesty and today is one of those days where the Mom i wanted to me was lost to the Mom I was...

She is now sleeping. I prayed for this all day.  Please, please let her sleep.  For the last few days we have been up all night - and I don't mean that as an exaggeration.  Cecily has been waking upwards of 8x a night and we have been unable to calm her down.  It kills me to see her in pain and it kills me even more when she won't calm to me.  (Normally - even on her roughest days Mommy seems to help.)  These last few days I felt useless.

And as I am about to put my head on the pillow my normal "the glass is half-full self" is finding the silver lining.  We got to visit with 3 of our favorite nurses - Stacey, Katie and Amanda! We were treated to an outdoor visit from the SD Zoo where Cecily was inches away from amazing animals, and best of all... she is sleeping! She is not in pain.  She is in good hands.  And I will learn to forgive myself because I know I wasn't my best self  today... but there is always tomorrow!

Onwards and upwards!

Today marks my Mom's last radiation treatment! HOORAY! She beat cancer and she got to ring the bell today at the hospital... we could hear it dinging loudly all the way in Cardiff!

Noah greeted Grammy with a big hug and a bottle of very good wine.  He said, "Congratulations - cancer free... you are cancer free!"  The words were slightly mumbled but it sounded like a song from his precious little mouth.  He turned to me after saying it and asked me if that meant Grammy wasn't sick anymore.

I said, "nope - Grammy is all better!"

We are so proud of my Mom for the way she handled the last nine months.  From the initial diagnosis, through her surgery, the chemo, the ER visits, hospital stays and daily radiation treatments she never gave up hope and just operated with a no non-sense approach to the process. 

"You just have to get on with it..."  I can hear her voice ringing in my ear.  She just pushed through and skipped the pity party or "why me" moments.  She is one tough cookie - just like her name-sake, baby Cecily. 

We are so grateful to have this chapter closed and while the check-ups, oncology visits and tests will continue... we know she can beat this!  We are so lucky that Mom had such a great medical team caring for her on her journey - led by nurse-in-training, my Dad! 

Cancer is evil.  It has taken too many lives - including Brien's Mom Judith - for whom baby Cecily is also named.  Today we raise a glass (or two) to everyone who has fought the disease, to everyone who is still fighting and to those that are no longer with us.  It is a good reminder to live each day to the fullest and not to worry about the silly things in life. 

Thank you Cherice for the picture in this blog post.  My Mom is, (and for the record has always been - a princess!)  And even with a bald head she is the picture of strength, hope, love and true beauty.  Hair is simply over-rated!  She is an inspiration to me to never give up, to always believe and to just keep putting one foot in front of the other because at the end of the day there is nothing to do but "just get on with it!"

We love you Mom and we are so happy that this challenging time in your life is over.  We are proud of you and today we celebrate you and your journey. You have once again showed us how to face down adversity and win.

Onwards and upwards!

We were offered a queen mattress and maple frame - used in decent condition.  If you are interested please reply to this blog as we only have it for 2 days.  Thank you!