Thank you to San Diego Home and Garden for featuring two rooms by Cecily's Closet in their April magazine on newstands today! You can read the article here.

This project room would not have been possible without the Cecily's Closet ALL-STAR team! Thank you PaintGreen, Inside Emily Dolton's Head and McDaniel General Contracting for pulling off not one, but two amazing spaces! Thank you also to Teen Volunteers in Action (TVIA) for coming out for 2-days to help make the life of two amazing children even better! 

Learn more about Baris and Kensington's story and how these rooms are making a difference in their lives here.

Onwards and upwards!

I was emailed this information because we are always looking to keep up on the latest epilepsy news/debates/meds for Cecily. I am just pasting the email as it was sent to me from the Epilepsy Foundation of San Diego.  Thank you for reading and if you are so inclined - joining the cause!  Onwards and upwards!

Please help to ensure that children with epilepsy have access to emergency seizure rescue medication at school. Our children with epilepsy need access to emergency seizure rescue medications.  SB 161 (Huff) will authorize trained non-medical personnel in schools to administer Diastat AcuDial. It is critical to ensure our children have access to an education and access to their emergency medication. We need your voice to be heard now!
With a united voice, we can tell our California legislators to support SB 161! Your immediate response is requested.

View SB 161 Bill Language Here      View Analysis of SB 161 Here
There are two ways to take action.
1. Send an email to any or all of the Senators on the Senate Health Committee (listed at the bottom of this email). Please copy me in by adding my email address to the cc portion. (healy@epilepsysandiego.org)
In the subject line of your email, write "Vote Yes on SB 161!"
In the body of your email, paste the following message or write your own:
" Please support SB 161 - Administration of Diastat® in school settings.  Diastat AcuDial is a rectally administered, pre-dosed preparation of diazepam gel. This medication is  FDA-approved and was designed to be administered by people without medical training, such as parents, teachers and other caregivers. The lack of clear, uniform legal guidance regarding the administration of Diastat in California's school districts and categorical programs places thousands of students with epilepsy at increased risk of death and severe neurological impairments if they cannot access their Diastat prescription while at school;  school districts  will be at risk of facing escalating costs associated with lawsuits.  SB 161 would correct this lack of legal guidance to school districts and ensures equal access to education and school- related activities, for thousands of students with epilepsy similar to the rights afforded to children with diabetes or severe allergies."
Please be sure to include your name and address in the body of the email.
OR 2. Send an email to show your support to healy@epilepsysandiego.org and include:
Dear Legislator,
 
      I support SB 161.
First & Last Name
Home Address
Child's School District (if applicable)
Optional -- Personal story, if desired
Chairs of the Senate Health Commitee:  
    - Senator Edward Hernandez O.D., Chair  ( D- Los Angeles )    Email: senator.hernandez@sen.ca.gov
    - Senator Tony Strickland, Vice-Chair  ( R-Thousand Oaks)     Email: senator.strickland@sen.ca.gov
Other Members of the Senate Health Committee:
    -  Senator Elaine Alquist ( D-Santa Clara)                                  Email: senator.alquist@sen.ca.gov              
    -  Senator Joel Anderson ( R- San Diego)                                    Email: senator.anderson@sen.ca.gov
    -  Senator Sam Blakeslee ( R- San Luis Obispo)                           Email: senator.blakeslee@senate.ca.gov
    -  Senator Kevin De Leon ( D- Los Angeles)                                 Email: 
senator.deleon@sen.ca.gov
    -  Senator Mark Desaulnier( D-Concord)                                      Email: senator.desaulnier@sen.ca.gov
    -  Senator Michael J. Rubio ( D- Bakersfield**)                           Email: senator.rubio@sen.ca.gov
    - Senator Lois Wolk ( D- Davis )                                                     Email: senator.wolk@senate.ca.gov
_________________________________________________________________________________________________
Click here to join our Awareness and Advocacy Network!
Thank you,
Healy Vigderson
**********************************
Healy Vigderson
Assistant Director
Epilepsy Foundation of San Diego County
(619) 296-5753
healy@epilepsysandiego.org
Join me on April 17th for Sharon's Ride.Run.Walk for Epilepsy!

Dear East Coast Angel,

How were we so lucky to have you fly in our life?  One of the only good things to come out of Iron Mountain was our lasting friendship. Thank you for wrangling the other angels on the East Coast... we are so grateful for your continued love and support.  We believe in the power of prayer.

We know you have been working over-time because Cecily is smiling, giggling and growing every day! We can see the results of your prayers when she wakes up in the morning with her eyes dry, no crying, and her smile wide, no biting! Thank you for taking such good care of her.  Thank you for always being positive and believing. Thank you for always listening and liking and cheering us on from a far! Thank you for taking such good care of ALL of us! What a supportive friend you have been to our family.

We wish that every child could have the benefit of an angel like you in their life. You have carried us during our darkest days and you have soared with us during the highest highs. You are and will always be our East Coast Angel!

We are sending you beautiful birthday wishes.  Lots of love!

Onwards and upwards!

Meet Gabriel. Isn't he the cutest little cowboy? We just want to pick that little guy up and squeeze him tight. His story will touch you. His family will inspire you. We are grateful to just be a small part of their lives.

With Gabriel's room we finished our 10th room makeover just before our official one-year anniversary and we couldn't be happier! Why? Because this last room hit a chord with us and the parallels between Cecily and Gabriel were striking.  We adored working on this room. It was the first time we have done a shared space - for Mommy and son - and it was very fun! We loved trying to strike a balance of infusing a hope-filled space with an energetic vibe for little Gabriel.

Thank you to the fabulous aritst, Hayley McNeil, for helping transform Gabriel and his Mom's shared space into a fun and relaxing space.  Gabriel's Mom wanted to surround Gabriel with angels because she believes in their healing power. Hayley jumped right in and created a beautiful Mom cradling a baby in soft blue and yellow hues! It served as our backdrop for the entire space.  Thank you to Beach Bungalow Designs for donating the gorgeous linens for Gabriel's crib, and thank you to Dance and Company for donating the beautiful bed and feather pillow to make a soft and comfortable retreat for Gabriel's Mom.

Check out Gabriel's story and the room here!

Onwards and upwards!

An enormous "THANK YOU" to all the mommies who made it out to Aviara in support of Cecily's Closet today.  Thank you Kelly for planning this fun play date at the park and spreading the word about Cecily's Closet. We are so grateful to have the support of friends, family and our little community.  We can grow this little charity one Mom at a time!

This past weekend we participated in Involved Exceptional Parents (IEP) Day.  We met parents of children with special needs. We met the people that provide services for our children. We learned and we were inspired by Moms from every background and walk of life. We learned about the Mom responsible for Mother's Against Drunk Driving (MADD). We learned about the Mom who is responsible for the motorcycle helmet law and the Mom who is responsible for the hard to open medical bottles. How many more accidents would there be if it were not for these Moms who stood up and ensured their voices would be heard after tragedy struck their families? We learned about all of this inspirational women and more from the Mom, Mary Beth Phillips, who founded TrustLine,  California's Background Check for In-Home Child Care. Why did she found it? She was on a mission to ensure that what happened to her daugther didn't happen to anyone else, ever again!   Her daughter's care giver shook her so hard that it caused her retina to become detached, leading to permanent blindness.  What did we take away from this conference? Mommies can do anything and that ALL Mommies Rule.

If Mommies work together they can change the world one minute, one hour, one day at a time. If Mommies work together we can create programs that help our children grow and thrive. We are so grateful for all the Mommies that are helping to fuel our efforts at Cecily's Closet.  It started with my Mommy, Cecily. And this circle of love just keeps on spreading. We are so very excited about harvesting the Mommy power to help children with special needs in San Diego. Thank you!

Onwards and upwards!

Go Cecily! Cheers, applause, smiles and a whole lot of celebrating tonight in the Ackerly house.  For a long time Cecily has been mobile. She started with rolling. She could roll faster than a penny down a hill if she was motivated.  Then came the army crawl. It was slow and steady and she fought for every inch. (The negative voices and non-believers said she was sliding on the floor... but I KNEW she was working so hard to pull her tiny body forward.) It was beautiful to watch and to see Noah cheer her on and shout like a maniac - just like Mom and Dad. We celebrated! Then the army crawl became so strong we thought she may skip the entire crawling phase all together. She could get up and over objects, up and down stairs (with some assistance) and she would not be stopped. Over the last few days we have seen a look of determination in her pretty blue eyes that simply says, "get out of my way... i am going to do this!"  I think she has a hefty dose of the Short/Ackerly competitive drive.  She may have heard a few non-believers recently and that just motivated her to show them what she can do! She is a fierce, stubborn and wildly unpredictable little girl. We love her to pieces.

After spending four hours this morning at Children's I decided to work the rest of the day from home and I am so glad I did! I heard Cecily's wonderful and supportive nurse, Kim, shouting from the play room. "She is crawling! She just crawled..." Of course I was NOT going to miss this. I ran - grabbed the camera - and ran in to the room to see Cecily happy as a clam, proud as a peacock, sitting up.  She repeated her efforts and smiled at the camera (yes - she is a charmer!)  She did it a few more times before going back to her favorite mode of travel, the army crawl.  We KNOW she can do it! She KNOWS she can do it! And if properly motivated, she will continue to do it!  (And yes, we have pictures to prove it!)

As a Mom, a fiercely loyal and wildy protective Mom, I can't stand to hear people tell me what Cecily will and won't do! I'm sorry - do yo have a crystal ball? I remember asking crystal ball questions before and the answer was always the same - time will tell, prognosis... blah blah blah, but there were no answers!  Well the truth is no one really knows!  And that is why HOPE is so important to parents of children with special needs.  You never know when your baby is going to turn around and surprise you. So be ready and never underestimate.  It is so much better to BELIEVE!  So that why I won't tolderate anyonen speaking about Cecily as if she is not in the room or understanding what we are saying. I am convinced she understands everyone that is going on and she is soaking it all in!  I want everyone on Team Cecily to be supportive and to believe. We do! So in our house you are either on the Team Cessy bus or you are off it! There is no room for the doubters on our bus...  Cecily can hear you and pretty soon she will tell you herself...

We are just so proud of her and her supportive brother. Noah has been pushing all of my buttons lately. But... despite his ability to find all of my Mommy weaknesses... he remains the number one advocate for Cecily. He was so excited when I picked him up from school and I told him about Cecily's accomplishment. He gets it! He adores Cecily. After all, she is HIS baby... as he corrected me today!

So today we have our first crawling day on all fours. It will take a lot of practice to make this her primary mode of transit. But we will relish the little victory. Life is short. Time for pizza, ice cream and some of those yummy Cadbury eggs that are lining the grocery stores right now... Onwards and upwards!

We are honored to be on the cover of this year's edition of the San Diego Family Magazine, Flourishing Families Issue. 

We couldn't think of a nicer way to celebrate Cecily's Closet's  one year anniversary! We are a tiny charity but we are committed to making a difference for children with special needs in San Diego. We would not have been able to do any of the work we have completed this year without the support of our family and local businesses like PaintGreen, who paints our rooms beautifully with low VOC paints at no cost,  Inside Emily Dolton's Head, who transforms rooms into magical spaces and donates her art, time and talent in abundance, EasyFitMom, who donates a dollar of every sale to us,  and non-local,  Kustom by Kris who provided the branding, web site, brochures and banners for our heart-filled operation.

You can read the article about Cecily's Closet in the guide - we're on page 18! (Thank you Anita, Mom and Dad for EVERYTHING you have done for us. If everyone had a team like you in their corner the world would truly be a better place).

Now back to the resource guide! We are so grateful that a wonderful resource guide like this exists! Shortly after Cecily's birth we were shocked, overwhelmed and in need of help. We had the support of our family and friends, but we didn't even know what it meant to have a child with special needs! We were blessed to have Dr. Christine Wood of El Camino Pediatrics, Cecily and Noah's  fabulous pediatrician, to help us navigate the waters, answer our questions and ensure Cecily was provided with every service she would need to grow and achieve her full potential. We know not everyone is lucky enough to have a Doctor that stands by your side, responds to manic text messages, teary office visits AND has an understanding of how Children's Hospital works.  Now, because of San Diego Family Magazine  AND  the amazing individual efforts, diligence, passion and conviction of Emily Dolton, all families in San Diego will have access to a printed or online guide to help them support their child from birth! We are so grateful for this guide and just so pleased to be a part of it!

We are overwhelmed and grateful! I hope you will share the guide with others who may need help. It is a bible for a caregiver and we are committed to ensuring everyone knows help is available - you just need to know where to look.

Note: The digital version of the resource guide lets you flip through pages like the print magazine. 

Onwards and upwards!

The Communicator is a print and online newsletter that services people with developmental disabilities in San Diego and Imperial County.  Check out the newsletter...we're on page 5!  Onwards and upwards!

What a weekend! We scrubbed and cleaned, filled Grammy and Grandpa's house with loads of our "stuff" and finally got our house back on the market. I am an optimist so 3x is the charm! Bring on the buyers...Reduce the stress... And hopefully move closer to my folks. 

This weekend I was able to truly enjoy Noah and Cecily and all the fun that comes with having young children. We had no plans and we loved it! A schedule free day is the best type of day in our house. The time change has upset the kids' sleeping schedule but hopefully for the better. I would love Noah to awake at 6:30 instead of 5:30... and I don't mind if Cecily stays up a little later at night because I adore my quiet time with her when the day is through. 

I posted this picture because it shows what a little angel my Noah is when it comes to Cecily. He is always helping... She is two and he still loves to help with her bath. He wants to do it all by himself - but I remain a very close distance while he pours the water and gives her a gentle splish/splash. Cecily LOVES water and she loves Noah so her bathtime is one of her favorite times of the day!  

Cecily's new word is toe! We have been working diligently to help her identify her body parts... we would love her to be able to point to the places that hurt so we know where her pain is. She is making steady progress and this weekend she just couldn't get enough of her pretty toes! She likes to giggle when she looks at mine and she loves to pull hers up into her mouth and high over her head like an 80's jazzercise queen.  Then there we are... lying on the bed and she looks at me, looks at her toe, and exclaims, "toe!"  Of course being the proud Mommy I scooped up my little bug to find Daddy and Noah.  I was telling Brien the amazing feat and when I finished she looks at Daddy and says, "toe"!  I love it when she does this because I swear there are people who don't believe me. She can have moments of absolute quiet and sometimes she can go a day without a true word... but she speaks to me and that is all that matters! When she is ready she will share her voice with the rest of the world and until then I will be right there to listen to her. 

I want to say thank you to Emily Dolton who continues to inspire me on a daily basis.  She is truly a gift to her children, family and the community. She gives and gives with her time, her talent and her devotion to children with special needs. She is one of the biggest reasons Cecily's Closet was able to provide room makeovers for ten children in our first year. She is the reason there will be a directory of all the resources available to children with special needs in San Diego - and again  - the reason Cecily will be featured on the cover of that Flourishing Family Guide next week. She is the reason we will have a beautiful booth at IEP day on Saturday.  If you ever need a mural, color consultation, or art for your home, please consider hiring her.  When she reached out to Cecily's Closet to see how she could help our charity she did not want any publicity. She was doing it because she is passionate about our cause. She was doing it because she LOVES to help others and to make a difference in the life of a child. It is because of this that I will blatantly ignore her desire to do this quiety and instead I will bend over backwards and sideways to promote her services. She is talented, trustworthy and just plain lovely.  When you meet people like Emily it reminds you that it is always better to give than to receive.  You can find out more about Emily on her site, http://www.insideemilyshead.com/.

Onwards and upwards!

 There are still spaces left for the Involved Exceptional Parents’  Day Conference!
 
The 28th Annual Involved Exceptional Parents’ Day Conference: Resources for Family Success, will be held on Saturday, March 19, 2011.
 
Key Note Speaker, Mary Beth Phillips, a parent of a child with a disability and Executive Director of the California Association of Family Empowerment Centers (CAFEC), will provide information on resources, technical assistance and systems change advocacy efforts initiated through the statewide network of family resource centers.
 
The conference is geared for parents of children with disabilities and/or special needs & the professionals who work with them and it will be held on Saturday, March 19, 2011. Workshops are offered in both English and Spanish.
 
The $35 fee includes breakfast, lunch, 70 table resource fair and a full day of workshops!! What a deal!
 
There are still scholarships available for parents (SDUSD & other) - contact Sandra Bishop (English) at (858) 576-2966 or Sonia Griffin (Spanish) at (858)576-2831. Visit http://www.iepday.org/ to register today!

Onwards and upwards!