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!
We hope you all had a very Merry Christmas, or Hanukkah or whatever it is you may celebrate this time of year. We certainly did! I will say it was our best
Christmas yet! We've had a few bumpy ones lately and to have the family together was a big blessing and to watch all of the children delighted with everything - from Christmas cookies to presents - to playing with all of the new toys was so much fun... but it didn't compete with our big news!
Miss Cecily is no longer taking anti-seizure meds as of Christmas! Ho ho ho! Now that is a Christmas miracle that we won't soon forget. More than two years ago Cecily was taking about 8 drugs a day - not all for seizures - but it was a lot! As of now, she is only on one drug for her continual GERD but she is no longer on Topamax - known in the medical field as dopamax for its dopey impact on patients.
When Cecily began taking her anti-seizure meds she went into a mental coma. Her personality seemed hindered and at times she didn't seem mentally present. We knew the drugs were for the greater good and we had hope that one day this day would come. We had been warned that it may never come...that Cecily could potentially be faced with the intellectual IQ of a baby for life and that she was at risk for a host of other seizures - beyond infantile spasms. It was a lot of information to digest and we know that those risks still exist today... but we remain hopeful and optimistic. We share this deeply personal information with the rest of the world to provide hope to those parents who may also receive what can sound like devastating news about their children and their prognosis. We have the greatest respect for Doctors. We know Cecily may not be alive today without the amazing medical team she has that watches over her growth and development. BUT... we also know that Cecily would not be where she is today without the strong belief that we maintain as a family that she can and will do anything that she sets her little mind to. She needs time. She needs help. But one thing is for sure - she is proving the impossible possible time and time again so we "wont' stop believing!" (Jay - that was for you!)
We are so excited about this news. Each day is a new awakening for Cecily and for her brother, Noah. Today we got Cecily new shoes (orthopedic stuff...) to help her walk. After the shoe store visit we headed to Del Mar for a family beach outing. Cecily, for the first time, climbed up the playground stairs all by herself! She was in pursuit of her favorite person in the world - Noah. Are these magic shoes? Maybe. Magic child? Most definitely. (For the record she was not walking she was crawling and pulling to a stand but this is an amazing feat for our little one). What else? She is eating more and more by mouth every day. It is still small bites but they are bites. And better yet - she is not spitting it up on her bib or drooling it out of her mouth. And after every bite she claps for herself and looks to see who is watching so she may receive her praise. Princess? Most definitely but we don't care. She has worked for the title and she darn well deserves it for the amount of work she does on a daily basis for the tasks that most of us take for granted.
We also celebrated my Mom who is almost finished with her cancer treatment. Both Cecily's provide us with daily inspiration to live to the fullest and to be grateful for every day you receive. They are daily presents that we can't take for granted!
We hope everyone has a very Merry Holiday season and we look forward to getting back to work in 2012.
Ho Ho Ho!
Onwards and upwards
Happy Holidays from Cecily's Closet! Thank you to our generous donors that provided Christmas for more than 50 children with special needs (and their families) in San Diego. It would not have been possible without the hard-work of so MANY people! It continues to amaze us how dedicated our volunteers and supporters are of our mission to spread love an hope to children with special needs here in our own community.
A big thank you to Sherri and Cooley LLP for again playing the lead role of Santa. They provided 6 families with an amazing Christmas PLUS they brought in 15 bags of gently used toys, with an emphasis on gentle! I am always amazed what this wonderful law firm has done for our tiny operation and we couldn't be happier.
We would also like to recognize Coastal Family Living, Steele Realty, Dance & Company, TVIA Moms, Girl Scout Troop 3016, my sister, and all of the amazing individual contributors who helped make Christmas special for so many families this year. We are so very grateful and we know the families who recevied all of the amazing gift baskets & presents are equally grateful and overwhelmed. Together we can make a difference.
One of the most touching deliveries was that of 8 little Girl Scouts from Troop 3016 who brought Christmas to a very special little girl their own age. This Troop has supported Cecily's Closet from the very beginning and this was their first real opportunity to see the impact their time and donations can make for a family in their own community. I am sorry I couldn't see it for myself but I know from her parents comments on FaceBook that they are very grateful!
Below is the back of my mini-van (packed solid with presents) and this was just one load to one agency! Noah was a very good little elf and helped us wrap and sort the presents. He kept saying, "we have a messy house here..." and yes for a few days it was hard to get anywhere without tripping on toys but we wouldn't have it any other way!
And speaking of Noah - we will be announcing Noah's Book Nook in 2012. We didn' realize that "Cecily's Closet" would take-off in such a way and Noah is very much a part of our operation so we'll be branding our book drives in honor of our little book worm next year. More details to come!
Tomorrow Cooley LLP, led by chief elf Sherri, will round out day 2 of our program. I am sure more pictures will follow. We just wanted to say thank you so very much for giving during a very difficult economic climate. We wish everyone could see the impact their actions made. We will be posting the thank you notes this year (with permission from families) so everyone can see how a small action can make a very big reaction if we work together!
Onwards and upwards!
This is a repost that I just had to share. We are so grateful to Patrick Wilkens for his efforts with Cecily's Closet. This article that I'm sharing shows how much he gives back to children with disabilities.
Onwards & Upwards!
A Few Hours to Change a Lifetime...
For several San Diego County Health and Human Services Agency employees and other community volunteers, a few hours at the Hospital Infantil las Californias – a children’s hospital just across the border in Tijuana – provides a lifeline to children with disabilities and their families.
The employees work in the County California Children Services (CCS) program as physical therapists, and they journey to Mexico several times a year to donate their time working with disadvantaged children with physical and developmental disabilities.
“This is as rewarding as you can possibly have it,” said Patrick Wilkens, the supervisors of CCS’s North Medical Therapy Unit located in Kearny Mesa. “For many families, this might be the first time their child has had therapy or the first time they’ve had any type of equipment or braces.”
Wilkens recounts one such rewarding and life-changing story of a mother and her 5-year-old son, who was completely unable to walk. The mother had been unable to afford any type of equipment for her son so she carried him in to the hospital on her shoulders, which is how he always got around.
By chance, there was a donated wheel chair available and braces that fit the child. Wilkens and a volunteer handyman went to work and fit the child with the equipment and he was able to leave the hospital in his own wheelchair.
“He came in as a baby, and he leaves as a boy,” the grateful mother said.
The hospital itself has only one physical therapist, so the trips made by the volunteers are critically important to the young people of that region. The outings originated with Ellen Norton, a physical therapist at Rady Children’s Hospital.
“Ellen goes down once a week and brings donations,” said Wilkens. “The level of need there is so great.”
A lot of the donations of equipment come from generous San Diego County families who have disabled children themselves who have outgrown the equipment.
The volunteers are accepting donated toys for the children. They aren’t just regular toys though; they are toys that are used in therapy to promote physical development.
“They are therapeutic toys – toys that the child has to walk with for example,” said Wilkens. “They think they’re just playing and it’s fun for them, but they are getting a benefit from the toys.”
The toys often serve the same purpose as a piece of medical equipment, but are cheaper to acquire.
You can find the list of toys used for therapeutic purposes at www.toysrus.com, clicking on Wish List and entering wishlist #31255211.
They always say you can't keep a secret forever... But I have to give credit where credit is due and say Noah kept this secret for a long, long time! He only told his cousins and since their Mommy already knew it was not really a big surprise. What am I talking about? Well... Noah asked for something for his birthday... and for Christmas... but he won't be getting it until Easter. Any guesses?
It's not a puppy. He asked for that, too.
The Ackerly family will soon be a party of five. And by soon, I mean Easter - or slightly before. Noah is beyond excited. He really wanted a little brother and he kept telling us that he knew it was a boy. I kept telling him that only God knew for sure and that either way it was a blessing for our family.
As my tummy is growing I find myself answering all kinds of questions from Noah.
"Mommy, is this baby going to have a tube?" ... "Is this baby going to walk"... and "Is this baby going to be able to talk to me?" "Will Cecily still be a baby when the new baby comes?" "Do you think Cecily will share Mommy with the new baby?" "Can the new baby sleep in my room...?"
I wishI had the answers but at least I can say YES to that last one. :)
His five-year-old questions sometimes catch me off-guard. He has a way of cutting through to my core and exposing my soft underbelly. He desperately wants Cecily to do all of these things and he remains her biggest supporter. Today, Cecily had 2 lollipops! (yes 2!) After getting over the fact that Cecily was getting this treat for dinner Noah sat down to eat his veggies and mundane dinner. (It didn't compete with a lollipop!) But that didn't stop him from getting so excited when Cecily was licking it and putting it in and out of her mouth without gagging! He was so excited to show Daddy when he got home. He kept saying, "Good job Cecily! Good job!"
This morning Noah helped me dress Cecily. I decided that it was time for a change from the sweats and put on a cute, soft and comfy dress with tights and her ballet shoes. Noah said, "She looks so cute. Let's go show Daddy." As we were walking down the hall he stopped me because we needed to go back. "We need to brush her hair and we should put a bow in her hair, too. That would look real cute. Right Mom?"
I love that kiddo!
He can't wait to teach the new baby everything and he asks me every night to share stories about what he was like as a baby. I enjoy this time and he enjoys it too. He finds himself very funny... and so do we!
Kids are the best gift. I took a beating (and I mean it) at work this week. I can over-analyze every situation and obsess over mistakes like nobody I know... but when Noah comes running with his eyes full of fun it is hard to worry about the silliness of corporate life. When Cecily licks her lolipop or eats so much that we see baby food in her g-tube... we celebrate! The kids keep us young. (Of course they do nothing for the dark circles under my eyes and the new crinkles in my face...) but they DO keep us busy!
And I guess if we think we're busy now we can't imagine what we'll be when Cason Robert comes in April and we become Ackerly family, party of 5!
Onwards and upwards!
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! Warning... this blog does not come with spell check...