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One day at a time...

5/25/2010

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We're taking it one day at a time with Cecily. We have had some good days and some ups and downs, too. We are just trying to advocate for Cecily to ensure she receives the best medical care possible.  We know she is doing better but that is not good enough for us! We know she is still in pain and we won't give up fighting until we know every day is a good day for her.

We continue to be inspired by the generous designers that have reached out to us - and those that have responded to our gracious requests for help. It is encouraging to see the support that exists in San Diego for children with special needs.  It is strange to be constantly asking people for favors or help. I have always been a "do it myself" person.  We are just so appreciative and grateful.

I know many people think that it is crazy that we're trying to build a charity while our world is spinning - but that couldn't be farther from the truth. To be able to help families and give in a very small way helps us keep balance in our lives and inspires us to be better parents and better people. It also will set an example for our kids as they grow.  Yes, life is crazy! But life is what you make it. One of the gifts that Cecily has given us is the gift of perspective.  This is a gift that keeps on giving. When my day job takes a turn for the worse, or when things don't turn out the way I may have planned, I don't worry in the same way.  It will work out.  Life is what you make it. Onwards and upwards!

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Home Sweet Home

5/20/2010

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We were discharged yesterday from the hospital and we are so grateful to have Cecily at home. Noah is thrilled! Cecily is doing great and we just hope this wonderful progress continues. 

We would like to thank the nurses at Rady's for the wonderful care they provided to us during our stay.  We feel like family when we are there because the nurses truly go above and beyond. This visit was no exception and I wish we could do something to recognize their efforts.  We'll give a special shout out to Stacy S., Katie T., Jen G., and Amanda C., for giving 110% each and every day.  That said - we have never had a bad nurse at Rady's! We just love these ladies! 

We'd also like to thank Dr. Wood for calling every day, multiple times a day, to ensure we were doing ok. And for coming to visit us on a Saturday to speak to the Doctors on our behalf.  She is such a true gift to Cecily and our family.

We are just so happy to be home! This is the start of a new phase in our lives and we will pray for all good days ahead! Onwards and upwards!



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Still searching

5/18/2010

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This will be a short post as we're still in the hospital and we are still searching for answers.  We have found some new resources as we search for answers for our baby girl. Parent to Parent and the Association of Gastrointestinal Motility Disorders, Inc AMGD Family Support site for parents of children with motility disorders.  We're learning that you have to push and be proactive to get the support you need and the care you deserve for your child.

Cecily has been in the hospital for 9 days and the GI doctors are baffled by her ability to vomit, despite two procedures to stop it! We have faith and we're working all options to provide her the best care possible. 

The Cecily's Closet drive at work kicked off this week! We've had a really strong response and we are grateful for the support from my employer and my co-workers! We will focus on the positive! Onwards and upwards!
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Count Your Blessings

5/16/2010

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The glass is half full today! Cecily is resting comfortably and she is having a pain-free day. She appears to be tolerating her feeds and she is babbling and smiling and she seems genuinely happy. We will stay in the hospital for a few more tests and a potential procedure tomorrow. We are grateful for Dr. Wood. She is truly an amazing Doctor and she helps us navigate these challenging times. She took time out of her busy Saturday to come to Rady's and visit with us. She tracked down the attending GI Doctor and provided the necessary direction and support to get things back on track for Cecily.  I wish everyone had a Dr. Wood in their life! She is wonderful!

It also helps to have a wonderful nurse! Today we have our favorite, Miss Katie! She is what every nurse should aspire to be. She is hard-working like my sister, patient like my Father, loving like my mother, and smart and fun and wonderful with Cecily. She has made this week so much brighter!

Other great news! We had two more designers sign on to help Cecily's Closet! This is great news as we are short on funds but not on help! We appreciate the support from volunteers and local designers to help support our mission of making a difference in the lives of children with special needs. Check out our partner section for more information on these giving designers!

And... we have received an offer to help us with a key partnership that we've been trying to secure that could really make a difference for Cecily's Closet.  We are grateful for the support from family and friends. Onwards and upwards!
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Ramblings

5/15/2010

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Cecily is still in the hospital. We are optimistic that they are getting closer to helping her feel better.  Noah misses his little sister and having his family at home with him. Thank goodness for Grammy and Grampy for helping to care for him while we take shifts at the hospital with Cecily. She is resting peacefully right now.  For this, we are grateful.

I didn't write this but my Dad received it in a forward (no author provided) from one of our dear family friends. For me, this is is advice I need to follow. After the birth of Cecily there has been a lot of dust in our house. This makes me feel a lot better about it...

Remember...a  layer of dust protects the Wood beneath it. 'A  house  becomes a home  when you can write 'I love you' on the furniture.'  
 
I used to spend at least 8 hours every weekend making sure things were just perfect 'in case someone came over' Finally I realized one day, that no-one came over; they were all  out living life and having fun!

Now,  when people visit, I  don't have to explain  the 'condition'  of my home 
They  are more interested in hearing about the things I've been doing  while I was away living life and having fun. 

If you haven't  figured this out yet, please heed this advice.

Life  is short. Enjoy it!  Dust if you must but  wouldn't it be better to paint a picture or write a letter,  bake  cookies or a cake  and lick the spoon or plant a seed. It is time to ponder the difference between want and need !!!

Dust  if you must,  but  there's not all all that much time...with wine to drink, rivers to swim and mountains to climb,  music  to hear and books to read, friends to cherish and life to lead. 

Dust if you must, but  the world's out there with the sun in your eyes, the  wind in your hair...a  flutter of snow, a shower of rain. This  day will not come around, again... 
 
Dust if you must, but bear in mind, old  age will come and it won't be kind. And when you go - and go you must - you, yourself will make more dust! Share  this with all the wonderful women in your life. It's  not what you gather,  but  what you scatter that tells what kind of life you have lived.  

Onwards & upwards!
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A Beautiful Mural!

5/12/2010

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Today was a hard day but it ended on a good note! I got a sneek peek of the beautiful mural Rik made for one of our special children. It is amazing what Rik can do with paint! He has generously donated his time and services to transform a room into a safari retreat! We will be sharing before and after pictures once the room is finished but we are very grateful for this gift! Check out Murals Fantastic if you are looking to create a magical room for your child.

Cecily is still in the hospital and she is struggling.  She is whimpering and crying and it kills me not to be able to scoop her up and make her feel better.  We are hoping this is just post-procedure adjustment but as the hours pass our hope starts to fade a little more.  If love was a cure she would be happy and smiling around the clock.

On a positive note we had a lovely nurse helping us today.  I think nurses are the best! They are always caring, patient and supportive. They listen to Moms like me and they convey our needs to the doctors.  As Rady's celebrates Nurse Appreciation Week I would like to thank all of the lovely nurses that have taken care of Cecily.  We love them all - but our favorites are Stacy S., Katie and Patty.  These super nurses always go above and beyond!

It is getting late and it is time to do my "day job" to catch up on the hours I missed in the office.  Onwards and upwards!


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Tomorrow - a fresh start

5/10/2010

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There is nothing more important than family.  And thank God we have a good one because the last few days have been very hard and challenging. I am trying to find the positive but it keeps getting lost on me as I see my little ladybug in constant pain. What is pain? What is discomfort? I have a renewed appreciation for those words. I am devestated by Cecily's pain and I want to take it all away and give her a million kisses and hugs to make her feel better. But I am helpless. I can't help her. I am advocating for her but I can't take her pain away.

Today I was talking to myself (an all to frequent habit) when Noah heard me... He said, "Mama - you lost your marbles? Where did they go? Is it because I have too many balls?"  I smiled.  "No honey. I just lost them and I don't think they are coming back!"  He looked at me with his big blue eyes and said, "Don't worry Mom  - I'll find them for you!"   If only he could. If only he could pick up the marbles that I lost and replace them in my very tiny head.  I am pretty sure that there may be one or two rolling around but they are tired and confused. They are full of self-doubt and fear.  We are waiting by the phone as I type for a call from Children's. We are going to the hospital for another procedure tomorrow.  We are hoping that this may make a difference for Cecily. She deserves better. I must admit I had a small, party for one, pity party today.  I don't usually cry but Cecily's pain reached an all-time high and I couldn't hold it back.  Noah saw me and this made me feel horrible.  I don't want him to worry or to be consoling me. I am the Mommy!  He asked me why I was crying and I told him that I loved him and I gave him a big hug. He asked again and I just replied quickly that I was sad that I couldn't make Cecily feel better.  He smiled. He grabbed his little step stool (a wonderful puchase from Target) and said he knew how to do it!  Sure enough he climbed up onto Cecily's table and grabbed her syringe and showed me how to vent her... this typically provides Cecily some comfort from her pain. I smiled. he is three! I smiled. I realized how lucky I am.  Cecily is lucky. And she knows it. When she sees Noah her pain seems to subside, if only for a minute.  What a blessing!

I know tonight when I am awake in the hospital that I will once again feel so very grateful.  I know there will be Moms and Dads just like me - pacing the halls or praying for answers. I know that we will get through this because we have a great family.  Family is everything. Tomorrow our family will make a fresh start - and we hope that this is the first step towards pain free days for Cecily. Onwards and upwards!


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Everything I learned About Being a Mom...

5/9/2010

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Happy Mother's Day! On this day I have a chance to honor my Mom and all the wonderful things she taught me - and everything she continues to teach me about life, loving and being a Mom. 

Everything I learned about being a Mom I learned from my Mom, Cecily.  My Mom is generous, honest, loyal and compassionate. She puts the needs of others, especially her children, above anything else. She gives with her heart first and never asks to receive. She will not ask for anything for herself. She prays for others and cares for others. She adopts people in life who don't have families and treats them like her own family. She is not selfish or hurtful. She appreciates people for what they bring to the table and she does not judge. She is patient. She is hard-working. She is a role model.  She is my Mother!

She is a good Mom, a loving wife, a wonderful Grammy and a gift to our family. She cares for baby Cecily and Noah and she is fierce. (sometimes I think she may be too fierce!) She is a lioness and she is protective. She will stand up to anyone or anything that tries to hurt her family.  She is an advocate for us and she always will be.

She is a nag - but a loving nag! She is always trying to keep us going in the right direction. She is a friend.  She is what I hope I will be for my children when I am her age.  She is young at heart and she enjoys a good time! She knows how to party (sometimes too well!)

I wish I could do more for my Mom. I wish I had known my Mom's Mom. I wish that I had appreciated my Mom and Dad more before having children. I wish that I had recognized all the sacrafices they both made for me while my sister and I were growing up. It wasn't until I became a Mom that I truly realized what it meant to be a Mom.  I am grateful for Mother's Day so I can honor my Mom and tell her what she means to me.  Thanks for setting the bar high and for pushing me forward every day.

Happy Mother's Day to all Moms! It is a hard job - but the best job! I wouldn't trade it for anything. Onwards and Upwards!
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First Swim! Another water baby...

5/7/2010

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It looks like it is definitely in the genes... Cecily is a water baby just like her big brother, Noah.  She had her first swim today and she loved it! Pictures to follow as she looked adorable if I do say so myself! Two pig tails with yellow bows and a matching swim suit with floppy hat and glasses... oh yes, a baby needs to accessorize!

Today Cecily's Closet hit prime time! Thank you Terri Mauro, my hero to Moms of children with special needs, for her articles, her books and her blog!  If there are rock stars in our community she is one of them! She is a wonderful resource and so we were very honored today when she chose Cecily's Closet as her site of the day!

We're ready for a wonderful weekend! Onwards and upwards!
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Happy leg kicks!

5/6/2010

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There are days when I wonder if Cecily knows that I'm her Mommy. I always want to believe she knows... but when we have a rough patch or when I don't get sleep and I'm stressed with work or other silly stuff I start to obsess about things like this.  But today... she told me with her legs! She kicked the word Mommy - this I'm sure of! When I came home from work I was greeted with happy leg kicks and little body shakes (not seizures!) This is something I took for granted with Noah.  His body used to shake and his legs would kick and his face would break out in a huge grin when I'd walk in the door to pick him up from Grammy and Grampy's house after a long day at work. Today I won't say it was the same thing - but it was equally great! Cecily put her arms up a little but she kicked her feet like crazy when she saw me! It made some of the other "stuff" seem not as important.

It looks like Cecily is going to have another procedure. We'll just cross our fingers and hope we can get it scheduled quickly in hopes of keeping her happy and thriving. 

Cecily's Closet has enabled me to meet some really great Moms. Fierce Moms! Moms that advocate for their children.  With Mother's Day around the corner I just wish I could say yes to all the Moms that are reaching out to us to help their children. We want to say yes to every request. We will get more funding! We will do more! I just need to remember baby steps..  It took Cecily a while to kick her legs for me... but we're going to kick our way into the hearts of local San Diego businesses in hopes of spreading our story and our mission to provide assistance to families of children with special needs.  Onwards and upwards!
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