Cecily's Closet
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Volunteers to help with Recycle Program

6/26/2010

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Cecily's Closet would not exist without our loving volunteers! We are so grateful for the help we receive with our room makeovers! We're now looking for a few individuals who may be able to donate about 8 hours a month to help manage the Recycle Program!  We're looking to partner with the United Cerebral Palsy organization of San Diego.  They have a lot of great, gently used equipment that we could help pass along to families.  If you're interested in learning how to help, please let us know. You can email us at info@cecilyscloset.org or contact me directly at rachel@cecilyscloset.org.

What does this project entail? We need someone to help inventory the assets that the UCP has at their facility.  It would include taking digital photos and perhaps sorting out some of the equipment so we could advertise it on our site.

The Recycle Program is why we founded Cecily's Closet. We love the room makeovers but we could help so many families in need by encouraging families to donate their equipment to help those families that may not be able to afford the special items these children need to grow and thrive. Thank you for your support!

Cecily is having a wonderful week! We're eagerly awaiting our MRI results but Cecily has been vomit free for 5-days! This is a record and we're enjoying every minute. She is showing us her fun-loving personality and she loves nothing more than to play with Noah. He is her favorite! She lights up like the fourth of July when he enters the room.  He is such a good big brother. He amazes us with his patience and gentle way with Cecily.  They are both teaching us every day.  And last but not least, we found a wonderful nurse for Cecily! She is so amazing and loving and everything we had hoped for! We hope she will stick with us as we continue on our journey.  She is very caring, patient and loving with Cecily and Noah. Thank you Miss Kim!

And last but not least, we've had a lot of interest in our house. We're crossing our fingers that the offers start to roll in... Onwards and upwards!
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A Dad's Job is Endlesss...

6/20/2010

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It is 10pm on Father's Day and after my Dad (and Mom) worked tirelessly taking care of the kids on Saturday (so we could do a room makeover) and then on Sunday so my Dad could help us finish the room makeover - I actually forgot to give him his Father's Day card! I feel horrible.  I realize that being a parent can often be a thankless job when you have little ones.  But I have no excuse! I am not exactly little... but I still find myself needing my Dad a lot.  He is a rock in our life and he is always there to help with projects - from hanging pictures, to fixing odds and ends, and the biggest job of all, helping us raise our children with love and guidance.  He is so very patient.  I am pretty sure he must have a battery inside him because he never tires.  I am much younger than my Dad yet I am sure that I require much more sleep. What does Super Dad look like? I am pretty sure he looks just like my Dad.

And not to be outdone by Super Dad is my own husband and Super Dad to amazing Noah and precious Cecily.  Brien gave up his weekend (and 2 days of surfing) to decorate a room!  I am pretty sure that there are not too many husbands who would debate paint colors, curtains, bedding options and pillow placement like my husband. He is passionate and committed to the cause. He is why Noah is not at all phased by this past year.  My husband can stare down bad situations and somehow find the shiny spot, even if it is buried under a big pile of dirt.  He is always the first to notice what is Cecily is doing - not what she is not doing. He is the first to find someone's strength and not their weakness. I am so very grateful for his optimisitc and positive attitude.  He is caring, supportive, funny (very, very funny) and a giver.  I think he is one of the most loyal people I have ever met. I know that Noah and Cecily will grow up with integrity and honor because of their Daddy - and their Grumpy Gramps...

So late as it may be... I've always been taught better late than never! Happy Father's Day to the two men who make my world turn in the right direction. Thank you for your effort this weekend in transforming Nia's room into a magical, butterfly retreat.  I would be lost without you.  I could never say thank you enough for what you have done for me and what you continue to do for me every day! Onwards and upwards!
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Featured Site on Weebly.com!

6/17/2010

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Wow! We were wondering what drove the increase in form entries and traffic to our site! Thanks for the Weebly love! And thanks to Jay our VP of Technology for introducing us to this very cool site builder! You can check out weebly at weebly.com!
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A wonderful week!

6/16/2010

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What a week! What a wonderful week. We saw the insightful and caring Dr. Crawford today and he gave Cecily a glowing report. It is always great when a Doctor can see the changes that you are seeing at home - and even better when they are optimistic for you! We are so excited!  We are crossing our fingers that the MRI is normal but we are not worried! We can't control the outcome we can just appreciate that the medical community is looking at all the possibilites to help our littel baby.  So many wonderful things happened today with Cecily. The vomiting continues but she just keeps on fighting and she keeps on trying. She is inchworming! Yes! A major step (slide) forward! Actually she is going backward on the floor but forward in development so we will celebrate! She is trying to hard to crawl! She is babbling up a storm and parroting back what we babble to her! It is like the lightbulb got an upgrade and she's beaming bright light!

What else? Too much to say and I'm exhausted. Working and raising kids is a challenge and one that I seem to be failing at despite my best efforts. I am not sure how people keep all the balls in the air. I am quite sure I have a few balls rolling down the street, under the table and perhaps one or two missing in action.  But... I am doing my best and for the first time in my life that is going to have to be good enough.  I wish I could share the perspective that I've gained with others without seeming to be preachy! I get why so many Moms try and help "new" Moms by flooding them with advice and tips. The need to want to help and share is great - but the need to want to "do it on your own" can be greater. It is not until you can look back and see the whole story that life makes sense. Cecily has given us better vision and for this we are grateful. We are focused on the right things in life and we are focused on bringing our positive energy to others without preaching! We definitely don't have all the answers but we definitely know that asking for help is the first step.  And taking the help is the hardest step! And then the rest of the steps are much easier because you're not pretending that you don't need it! No one wants a pity party but it is ok to ask for help.

We've had a few families reach out to us lately for help. We want to help. We appreciate them asking for help. Sometimes we can do it and sometimes we can't. But I encourage people to keep asking. Everyone needs help. I want to thank my colleagues at Websense for their generous donations to Cecily's Closet this week. I am overwhelmed and we are all very appreciative.  It has been so lovely to have the support from my co-workers and fellow employees. We are looking forward to our room makeover this weekend where together we will make a difference in the life of a little girl.  Onwards and upwards!
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A roller coaster week!

6/11/2010

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 I am happy this week is coming to a close. It was full of high highs! and very low lows... We are more determined than ever to get Cecily the help she needs.  We'll meet with Cecily's surgeon on Monday to discuss possible next steps and we'll cross our fingers that a surgical view of her anatomy will prove useful.

Cecily had two procedures this week and we clocked quite a few hours at Rady Children's Hospital.  Luckily today we were able to take a well deserved break so Noah and his buddy could enjoy some much needed fun at Chuck E. Cheese! He is now passed out on our bed dreaming of pizza, ice cream and motorcycle rides... I think this will be a very long nap!

We have almost completed another room makeover! Pictures to be forthcoming when life settles down. We received our Federal Tax Exemption status today so we'll be able to pursue our corporate sponsorships with more vigor and we've got some good stuff in the works! For this I am truly grateful.

Next week our house goes on the market! If you know of anyone looking for a lovely home in Cardiff by the Sea point them our way! It's time to get back to basics and focus on the most important thing in life - family! Onwards and upwards!

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Pass it on! BDeev

6/8/2010

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One of the perks of starting a little charity is all the wonderful people it brings into your life. It is yet another blessing that we can attribute to the birth of our precious Cecily.  As we face yet another medical procedure tomorrow for Cecily, I am happy to champion another Mom and her community-created website BDeev.

Bedeev.com - Real Life Resources
Started by a family of a child with special needs, Bedeev.com knows the importance of being surrounded by loving friends, family members and acquaintances who are familiar with issues in medicine, public health, insurance, the law and special education. They understand that many other people are in similar situations and do not know where to find the information they need.  That's why they created a community website, BDeev.  Check out their site! It contains a directory of resources and information about health, healthcare and tangentially related issues and content. You can add, revise, comment and rate resources as well as provide other information that you believe others might find helpful. Pass it on!

And a special thank you today to one of our board members, Nicole Steele. She has been such an amazing supporter of Cecily's Closet. Whether is is getting her friends to rally behind Cecily's Closet on Facebook, brainstorming ideas on how to raise money, contacting people to champion our efforts or being supportive of us through the highs and lows and in-betweens... We are grateful!

And thanks to everyone for all of their support. It because of the support of family and friends that we can build Cecily's Closet and help spread stories of hope and love. Onwards and Upwards!
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First Room Makeover Complete!

6/5/2010

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Check out the video and pictures of our first room makeover! You can read about Andres' story here!

Thank you to Rik at Murals Fantastic, family and friends for making this "Sweet Dreams" makeover come true!

Onwards and upwards!

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Never give up!

6/3/2010

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How many calls does it take to get a prescription authorized? Too many! How many calls does it take to make an appointment? Too many! I have no idea how people who don't have help do this by themself.  Today (and this is not an exaggeration) I made at least (likely more) twenty-five phone calls to ensure Cecily got everything she needed from new prescriptions, to new GI studies, more appointments, medical records and the list goes on.  After three trips to three different pharmacies we found out that her new prescription required additional authorization! I wish I could have those two hours back! 

I am just grateful that nurses don't have caller ID blocking! I have to say thank you again to Nurse Nancy at the GI clinic for dealing with me. I try to be nice but this week I am sure I was not as nice as I tried to be! Yet, I could hear Miss Nancy smiling through the phone and she even called me twice despite the fact that she was off and attending a funeral. (Yes, I should probably have stopped since she was going to a funeral but Nancy is one of the few people that truly understand Cecily's situation and so I owe her a big box of chocolates and a bigger bottle of wine.  Then there is the always faithful, always wonderful Dr. Wood! She is such an advocate for Cecily and she always goes above and beyond. For this we are eternally grateful. I owe her a lot but will figure out how to repay her in the future. I also stalked her today, too!  Then there is my case worker at my insurance company. I was probably the biggest fly in her ointment today but I tried to be polite! I think I left her about six voice messages and she actually spoke life a handful of times on top of that... She is very patient. I am pretty sure she is the nicest insurance case worker one could ever hope to meet. She worked with Rady's today to expedite some studies for Cecily so we could fast-track her into the clinic and hope to identify what is causing her continual pain. Thank you to Nancy G. for putting up with me. 

Suffice to say - Cecily will be checked in for a GI study tomorrow am and this is great news!  We are just crossing our fingers that her chronic vomiting does not result in yet another hospital admission. We're teetering on the edge... but hoping to manage this as an outpatient!  We'll find out tomorrow if CHOC can perform the antro-duadenal motility study on Cecily. We know not to put all of our eggs in that basket but I'm pretty sure that I've got more than one egg in there already and it is yet to be scheduled!  I see about ten or so phone calls in my future but I am getting much better at this.

And I'll end this very silly vent with a little tip I learned thanks to my friend Paris and our social worker at Regional Center.  If you evern find yourself not gettng the necessary approvals for a second opinion - whether it be on the Doctor side of the insurance side - call the Department of Managed Health Care

This agency will help you advocate for your child, seek a second opinion, or ensure you're getting what you deserve from your doctor and or your insurance provider. You can reach them at 1-888-466-2219.  It will just be one more phone call for you to make... but you will be glad you did! Onwards and upwards!
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Advocating with Love

6/1/2010

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There are days like today that challenge ever fiber in my being to be nice. I want to walk outside and scream at the top of my lungs for someone to listen to me. I watch my son have the occasional tantrum and think to myself... yes, I'm having one of those on the inside. I would love to jump up and down, cry, beg and then whine my way into getting everything I want and need for Cecily. Last night Cecily vomited for the first time since her G/J tube procedure. It burst my bubble and admittedly - burst my bubble of hope. I had been cautiously optimistic but fearful that the vomiting would return. Today, it returned with fury.  Ironically we actually were at the hospital for 3.5 hours today... but Cecily waited until we got home to vomit.  Then she proceeded to waver between extreme fussiness and lethargy all day. She was not herself. She was miserable. She was crying out in pain and I am helpless to help her. I want to scream. I want to stand on my head and wave a white flag. But what would that do? Tantrums are not for thirty-something’s...

So, tomorrow we will fight with love and not malice. We will try and get that second opinion (which I thought we had already received) and try and keep our composure. We will be strong and we will not let our anger or frustration prevent us from advocating in the best way possible for Cecily. We will get a second opinion. I will focus my efforts and neurotic Mommy mentality into finding a positive improvement for Cecily. My husband will continue to be logical, rational and quietly strong. We refuse to believe that this constant pain and suffering can't be stopped. Cecily may have an unknown genetic syndrome but we will fight for more answers.

It is on days like today - our 8 year anniversary - that I have to smile and again be grateful. If there was anyone in the world I would want to face this challenge with it would be my husband. He is calm when I am crazy. He is nice when I get mean. And sometimes I am calm when he gets crazy (which is rare!).  We are a good team and together we will work to ensure Noah and Cecily get the best. 

A quick note on Cecily's Closet! We've had more little wins - that tally up to bigger wins! We're working with a fabulous artist for our second room makeover. She is a gift and if anyone is looking for custom wall art, murals or fine paintings, I encourage them to check out Art by Tasha.  We will have an article written up in a local paper and we've had a few more designers reach out to us proactively to help! We're putting our efforts towards organizing a giant garage sale to raise more funds for Cecily's Closet
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We've been given some great donations and this is just another small way we're trying to spread the word and fund our efforts.  Thanks to the support of family and friends. And thanks to my husband for always supporting me, even when I have crazy ideas! Happy Anniversary! Onwards and upwards!


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    Noah, Cecily & Cason's Mom

    Follow the ravings, rantings, stories, and challenges of a Mom of three as she
    attempts to see everything with the glass half full! Who knew being a Mom could
    be so much fun and so much work! Warning... this blog does not come with spell check...

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270-F N. El Camino Real #457
Encinitas CA 92024

Cecily's Closet  -  Tax ID 27-2245113