I love this kid! I just LOVE this kid!  He is a giggle box and the complete definition of fun! I had no idea how much fun being a parent could be until this little guy lit up my world. I am so proud of him - not because of his surfing or school accomplishments or anything like that... he is just a good kid with a huge heart. He has a gift for making us laugh and his sarcasm and humor is something else!

The other day one of his friends was trying to figure out where he ranked on the Noah friend ladder... He was suggesting that Noah like friend A better than friend B.  I eagerly strained my Mommy ears to hear the chatter in the back of the van.  I smiled from ear to ear when Noah responded, "I like all my friends the same!" 

And this is Noah.  He is always quick to let his friends go first.  He is always there to make sure no one is being mean.  He defends his sister like a Mama Bear and he knows how to make us laugh on demand.  This weekend - like every weekend -  we celebrated the sweet life of Noah.  It started with an early morning soccer game and was quickly followed by a trip to the skate park with his friends and then a fun day at the Kids Expo with his family that ended with video games and pizza at Oggis... and movie night with dessert! Yes, the sweet life of Noah! Sunday he was right back at it... heading back for Day 2 at the Kids Expo with his adorable little buddy before being swooped off to the skate park and then to the beach for a late afternoon/early evening surf session with the family.

I was VERY excited today because he wanted Mommy to paddle out with him!  I was going to actually do it (it would mark the first time in almost 8 years that I've dusted off my board...) but he let me off the hook with a pinky swear that I would do it next weekend.  I was just laughing to myself about how happy he made me by just wanting me to go in the water! I am so not cool and I'm not a good surfer... but I will be getting the board out because if my little guy wants to surf with me then I will do it! 

Cason and Cecily were sitting in the stroller chanting Noah - Noah - Noah! They just adore their big brother so I guess we can say we all had a Noah-love fest.  And the timing was perfect because next week Cecily heads off for yet another surgery and there won't be as much fun!  We have learned to make the msot of it when we can. 

Today Noah caught his best waves yet.  With every session he is getting stronger and more stable.  Daddy is so very proud! I could see his two hands thumping the sky when Noah caught his last wave and popped up into standing position and rode it almost all the way to shore!  The Woot Woots were loud and we all headed home.  It was a great weekend and a good reminder that it's good to get sandy every now and then.... the laundry, dishes, bills, GTM plans, and grants can wait... we had a lovely family weekend!

Onwards and upwards!

Thank you to Molina Healthcare, Inc., for recognizing Cecily's Closet as one of its six Community Champion Award Winners last night!

We are so honored to be part of an amazing group of people that are making a difference for so many people in our San Diego community.

This award is shared by all of our volunteers who are the heart and soul of Cecily's Closet.  While Brien and I may have founded this organization 3 years ago - a mission and vision for change is nothing without execution.  We are so grateful to our army of generous, passionate and caring volunteers who believe in our mission and are committed to spreading hope and love to children with special needs in San Diego.  Last night we honored those volunteers for their countless hours of service and for truly making a difference in the community one family at a time!

Thank you to our Board of Directors for providing the vision and guidance to help us on our journey.  Thank you to Emily Dolton, of Inside Emily Dolton's Head, for her tireless commitment to helping children and their supportive families in our community.  If it were not for her, Cecily's Closet would not have been recognized for this award and more importantly - we wouldn't be able to do what we do in the community today!

And thank you to the amazing volunteers from The UPS Store - for not just helping us raise funds (which we really do appreciate!) but for the passion that you have brought forth to our team! You are such a wonderful group of hands on people that have truly made the difference for us and enabled us to expand our service programs to so many!  There are so many people to thank - but a special thanks to Julie B., Christina H., and Beverly!  We would never ship with anyone else!

And of course, our rooms would never look so good without the beautiful painted backdrops that the team at PaintGreen provides.  From day one they signed up and they have NEVER disappointed! They are truly our go-to partner and we are so grateful for everything they have done for us and for everything they continue to do!

We are a team and we are so grateful that Molina Healthcare recognized our work in the community.  It is so exciting to see us building momentum and shipping more and more belly bands and recycling more and more equipment each week!  We love what we do and we are so happy that we have a team of local businesses, artists, volunteers, and local agencies that support us!

And of course, a special thank you to our family and friends because if it were not for them NONE of this would be possible!  Lots of love to Mom and Dad, Anita, Julie H., and my amazing husband who puts up with a lot of non-sense on a regular basis. He is the strong, silent supporter (sometimes sarcastic supporter)... but he does not get enough credit for what he does to keep us trucking!

Thank you team and let's put the grant from Molina Healthcare to great use!

Onwards and upwards!

We love Grace Ann Piano and her DENIZENS show at at GLASHAUS
Gallery in Barrio Logan is still running through June!  If you can't make it out...we've included a PDF file that contains her latest work!  Please pass it on to any prospective buyers and art lovers; friends, interior designers, gallery owners,
fellow artists, and anyone who may be interested. 

Grace is a beautiful person with a very generous spirit. We are so grateful to her for her support of Cecily's Closet.  Please check out her amazing work.

Grace Ann Piano
Artist
www.graceannpiano.com
art@graceannpiano.com
 619.778.3045

Onwards and upwards!

UCSD Epilepsy Seminar: Sat., April 27th
  
Clients, patients, caregivers and health care providers are all welcome to attend this free event.

Did you know more than 2.5 million people in the U.S have some form of epilepsy? And over 50,000 of those people are living with epilepsy in San Diego County.

On Saturday, April 27 you can get the latest insights on epilepsy and meet the faculty of UC San Diego Health System Epilepsy Center.

TO REGISTER: Please call 619.543.2445 or visit www.health.ucsd.edu/epilepsyevent


*Pre-registration is required.

More Information: 
Seizures and Epilepsy: http://www.kintera.org/TR.asp?a=fwKXKhN2IoI3KdN4G&s=flL0JhPQLfJXIhP3KxH&m=geIRKUMxGiKJL0I

AGENDA:

 8:30 a.m. – 9 a.m.
Registration and Coffee

9 a.m. - 9:25 a.m.
Welcome and Overview of Epilepsy

Vicente Iragui-Madoz,
MD, PhD, professor of neurosciences and director of UC San Diego Health System Epilepsy Center


Why does a person
develop epilepsy? This patient-centered overview will summarize the main types of seizures and epilepsy in various age groups and populations. Epilepsy comes in many shapes and sizes!


9:25 a.m. – 9:45 a.m.
The Epilepsy Center: The Next Step in Care
Evelyn Tecoma, MD, PhD,
professor of neurosciences and associate director of UC San Diego Health System Epilepsy Center


What types of procedures and testing are available at specialized centers? How does video-EEG monitoring help us to understand epilepsy at the level of the individual? What types of training and professionals make up the epilepsy care team?

 9:45 a.m. – 10:05 a.m.


Advances in Neuroimaging in Epilepsy
 Carrie McDonald, PhD,
associate professor of psychiatry and faculty member at UC San Diego Health
System Epilepsy Center and the Multimodal Imaging Laboratory

 How are new techniques able to see past the skull and provide images of the brain and its pathways? How are these new techniques helping us to understand epilepsy and brain function?

10:05 a.m. – 10:15 a.m.

Break
10:15 a.m. – 10:35 a.m.
Medically Refractory
Epilepsy: What are the Options?

Leena Kansal, MD,
assistant professor of neurosciences and faculty epileptologist, UC San Diego
Health System Epilepsy Center


In some people, seizures may continue, even with the use of medications. What are some options for these patients? How do we judge when a patient might be a candidate for new therapy, clinical trials or surgical treatments?

10:35 a.m. – 11 a.m.
Surgical Treatment for Epilepsy
David Barba, MD,
professor of neurosurgery, UC San Diego Health System Epilepsy
Center

Carefully selected patients may be candidates for surgical treatment, designed to remove the seizure focus or abnormal tissue, while avoiding injury to important structures, which may be nearby. Epilepsy surgery can be life-altering if the seizures go into remission after surgery. Learn more about this journey by watching a person’s seizures unfold and seeing an epilepsy center team’s approach to finding the best treatment for each patient.

11 a.m. – 11:30 a.m.

Panel Discussion:
Q&A
Throughout the program, audience members may hand question cards to assistants circulating in the audience. The panel will answer questions of general interest during the last portion of the program.


  
 Onwards and upwards1


 

Woot Woot Cecily's Closet! We just turned three! On March 17, 2010 our little web site launched with a simple vision of spreading love and hope to children with special needs and their families in San Diego.  In April 2010 we received our recognition as a 501(c)(3) tax-exempt organization and in May of 2010 we completed our first Sweet Dream Room Makeover! 32 rooms later we're having a blast and enjoying every second!   


Over the last 3 years Cecily's Closet has completed the following:
- 32 room makeovers with our 33rd in progress!
- Provided two hundred belly belly bands to children in need
- Recycled durable medical equipment to children in need of resources to help them achieve their goals
- And shared various donations with families in need - toys, books, and lots and lots of love and encouragement through our various book drives & adopt a family programs

Cecily's Closet has been recognized for our work in the community and most recently won three awards for our service helping children with special needs. (more about those later...)

And how is this all possible? Our AMAZING Volunteers! Cecily's Closet is truly the community's organization.  We are comprised of people who believed in our vision and decided to come on board and help make that vision a reality.  This wonderful group of women are the heart and soul of Cecily's Closet!

Thank you Emily, Julie D., Julie B, Christina, Beverly, Gina, Kate, Suzy, Nicole, Karla and Anita!

And thank you to Jon Ray & Chad from PaintGreen. PaintGreen has stood by our side from day one and they have graciously once again donated their time and talent to provide a beautiful backdrop for the 8 rooms we have planned for our Mission of Giving Program in August!

And thank you to our team of wonderful artists with a special thank you to our repeat givers:  Inside Emily Dolton's Head, Hannas Murals, Grace Ann Piano and Sweet Delisa!  You guys are always giving, giving, giving with your time and talent.  We love you!

The passion we put into Cecily's Closet is only possible because of the amazing support we have at home.  We have a strong family that surrounds us with the love, encouragement and help required to face challenges and overcome them with love.  I am lucky to have a husband that appreciates my passion and who quite honestly... puts up with me!... He is often called in the 11th hour to go and pick-up furniture, drop off heavy objects! and store "stuff" in our own house causing his man cave to look less cave and more storage shed...as he trips over medical equipment or odds and ends until we can find the right home for it!  Brien works more than full time for Scripps so while he can't be as hands on with the organization all the time - this non-profit would not exist without his brilliant mind, quiet support and encouragement.  Thank you to Mom and Dad for everything.  I am just the luckiest kid in the world to have these two doting parents who have endless patience and an unwavering committment to support me and our family!  And thank you to Anita for always being there for me in the ways only a sister can be and for your tireless efforts running our belly band program!  It is because of our loving (and sometimes smothering) family that we do what we do with Cecily's Closet.

Thanks for believing!  Let's see what we can do in 2013!

Onwards and
upwards!

Our little Cecily loves to dance and she'll be getting to shake her booty and learn some new moves with her friends at Dance & Company, an amazing performance arts studio in San Diego.

We love the talented and beautiful people that run this wonderful studio and we're so excited that they are going to be opening up a class for children with special needs!  To say we are beyond excited is an understatement.  Even before Cecily could walk she moved to the music...she was born to dance and it was one of the first signs she mastered. She used to make a dance for every bite of food she ate and we were willing to look quite silly because it made her so very happy. 

We're so excited to watch Dance & Company's 4th Annual Summer Production! If your children love to dance, be sure to save the date!

Sunday, June 23, 2013
Poway Center for the Performing Arts
15498 Espola Road - Poway, CA 92064
Matinee Performance 1:00 pm
Evening Performance 6:00 pm

Hurry! Tickets are on sale now - available at Dance & Company
or at www.powaycenter.com   Learn more about this fun, summer event!

Thank you to Lisa & Katie for your ongoing support of Cecily's Closet. We're so proud of the work you're doing at Dance & Company and we are honored to have you as friends.  

Onwards & upwards!

There are days when I am definitely not the Mom I want to be.  I'm tired after a long day at work, from waking in the middle of the night multiple times - and from admittedly often taking on too many things.  I worry if I'm doing the right things for my children and if they are each getting everything they need to be strong, sensitive, independent beings.

The other night I came home from work and I was just flat out exhausted.  Noah was hungry.  Cecily was fussy.  And Cason - well he was just a happy little clam looking for his cuddles and his bottle of milk!  Cecily was still on her feeding tube, Cason needed his bottle and Noah needed his dinner.  Noah was being very patient but I knew my time was running out.  I decided to turn on the Monkey (Curious George) for 30 minutes in hopes of having Cecily sit in her chair for the duration of her feeding.  (It is much easier to handle two little ones if one of them is sitting down!) 

Noah continued to let his hunger be known... even after I told him the dinner would be salmon, broccoli and carrots.  I decided I could race from the playroom to the kitchen to just turn on the pan and get a few things going... About 1 minute later I hear Noah shouting and sure enough Cecily had decided to move. Luckily Noah was on the case! He picked up her backpack that holds her milk and connects to her feeding tube - put the backpack on, and proceeded to follow Cecily around the house. I couldn't have been more proud!  Noah is always so quick to help me.  He is wise beyond his years and he is so compassionate.  I often feel people don't see the real Noah because when third parties are around - whether it be Cecily's nurse, a helper, or even friends & family - he is trying so hard to get his share of the attention.  (For the record - this kids gets LOTS of attention!) It's just his baby siblings get a lot too and he likes to ensure no one forgets about him!  I digress... Seeing Noah sitting with Cecily - holding the backpack and being so gentle and protective just made my heart swell up!  I was so happy.  I was so proud.  It made me realize that while I may often beat myself up over the things we can and can't do given our situation - Noah is thriving and he is learning the important lessons or empathy, kindness and true, unconditional love. 

On days like today where the the attack in Boston can spread so much gloom and doom - we must all look at the wonderful things in each of our lives.  The hateful people that planned and executed an attack would be only too thrilled to think they were spreading more hate and pain to others.  Together we must choose to hugs our kids a little tighter and perhaps snuggle a little longer - but for tomorrow we must let go - for I am convinced they will surprise us in ways we could never imagine.   I can definitely be accused of being a helicopter Mom, an over-protective Mom, a worry-wort... the list is endless.  But I'm also a very proud Mom and I know that kids learn from their parents.  Our kids watch our reactions and interpret the events through our lens.  We can choose to find the good and teach our kids that they can make a positive difference.  Today is a sad day but tomorrow will be better.  I have not ran in a long time... too long... but perhaps tomorrow I'll tie on the old shoes and run for those that were injured and can't run. 

Onwards and upwards!

Whispering Winds has been hosting Family Camp weekends for families of all
faiths for the past 25 years, but this year they are dedicating a weekend for the
first time just to special needs families July 26-28, 2013.

Their camp is located about 45 minutes outside of San Diego, just 4 miles from
Julian.

Their brand new Special Needs Family Camp will provide:

1. A trained 1:1 aide for each family for the weekend
2. 3 days and 2 nights deluxe lodging accommodations
3. 7 scrumptious meals (special diets can be accommodated)
4. Exciting age/ability-appropriate camp activities, crafts and
recreational opportunities for the special needs kids and their typical
siblings
5. Outstanding parent speakers focused on families living with
disability to include special needs education and trust attorneys; educators and
therapists
6. Swimming, horseback riding, ziplining, hiking and more for the
whole family to enjoy together

Cost is $46/person (age 3 and under are free) + either deluxe lodging ($440) or RV hookups ($225). 

They have $250 campership vouchers from the Boys and Girls Club Foundation available as well as LOADS of other private financial aid as well. So, no one should hesitate enrolling based on financial hardship as thery can likely find funding to help you!

The website for this wonderful weekend is : http://www.whisperingwinds.org/www/?page_id=4308

Please share!  This is an amazing resource and a wonderful opportunity for a family to get away together AND enjoy some extra help!

Onwards and upwards!

BONUS: Free stuff
It doesn’t get much better than free. If you agree, April is a good month for
you. 

- On April 9 Ben & Jerry’s will give out free cones. Bring on the chocolate fudge brownie and cookie dough!

- Lowe’s will host a free Build and Grow day for kids featuring “The Croods”
on April 13.  

- National Park Week runs from April 20 to April 28. (What better way to
kick off spring than with a free week in our National Parks?) 

- Not to be outdone by Lowe’s, the Home Depot will host a
free bird feeder workshop for kids on April 6 and a free adult DIY workshops for
adults throughout the month.  Take a workshop & join the Cecily's Closet team... I think I need a workshop myself!

Onwards and upwards!

It's that time of year again for the annualSan Diego People First Self-Advocacy Conference 2013! The conference is scheduled forMay 10-12, 2013 at the Marriott Mission Valley.  This exciting event offers people with
developmental disabilities the opportunity to improve their self advocacy skills
and network with peers.  The conference is planned and run by members of San Diego People First with support from agency staff.
 
Your help is needed to make this conference a success. 
You can help ensure the success of the conference and have a great time by
volunteering at the conference.  Volunteers are needed to assist attendees in a
variety of ways. 

Volunteers must be at least 18 years old.  Each volunteer should commit to a full shift (or shifts). Because this is a consumer driven conference, volunteers are asked to support self-advocates to manage many aspects of their
conference.

Attached is the Volunteer Registration Form and list of the tasks for each volunteer assignment.  If you are interested, please complete the Volunteer Registration Form and send it to:


Sandra Bishop
San Diego Regional Center
4355 Ruffin Rd. #104, San Diego, CA  92123
Phone:
858-576-2966
Fax:
858-576-2827
 Email:
sandra.bishop@sdrc.org
  
DON’T MISS THIS EXCITING
EVENT!

 More information about the San Diego People First
conference:www.sandiegopeoplefirst.com