Mary Kay Fundraiser Is Still Going!!!

As mentioned in a previous post a friend of ours, Melissa Lilley, is a Mary Kay consultant and she is generously donating 20% of what she earns up and until the first week in June! WOW!! She has so far raised a little over $100 for Alisha's trip to New Jersey. Thank you Melissa. To order through her please go to the following link www.marykay.com/mlilley . Also, free shipping to anywhere in the USA!! Can't beat that! Thanks again to all!!

One Month To Go!!! Thank You To All!!

Well we are down to one month before Alisha heads to New Jersey for her feeding and swallowing therapy. And, we are oh so very close to our goal!! We would like to thank everyone who has donated, volunteered and offered their support through well wishes and prayers!! Thank you so very much!!!

FYI Show KNCI CdLS Awareness May 2009

Tom Mailey Hosts a conversation with Heather Hull, mother of Alisha, and Marie Malloy with the CdLS Foundation. They talk about CdLS and the CdLS Awareness Day May 9, 2009.

CdLS National Awareness Day May 9, 2009

Hello All,

Coming up May 9, 2009 is the CdLS Awareness Day and to help spread the word about this syndrome, which Alisha has, we have arranged to have Heather and Alisha on a Public Service Announcement show called FYI with Tom Mailey at New Country 105.1 KNCI. Along with Heather and Alisha will be the Director of External Affairs for the Cornelia de Lange Syndrome Foundation, Inc., Marie Malloy. They will talk about the syndrome in general terms and about the necessity to get the word out because there are still children who have not been diagnosed who have CdLS and it can be life threatening if left unchecked. If you'd like to check it out the show will air this Sunday morning at 6 am on 105.1 KNCI. Hopefully once it airs we will get an MP3 copy that we can then post on the blog here for anyone interested. Remember May 9, 2009 CdLS Awareness Day!!!

Fundraiser Announcements

Hello everyone,

Please spread the word about the three fundraisers below.

We are also announcing three fundraising opportunities we have been able to line up:

1. Straw Hat Pizza Fundraiser: Thursday, April 23, 2009 from 11am to 11pm we will be having a Pizza Fundraiser all day long at Straw Hat Pizza located at 2929 Mather Field Road, Rancho Cordova. Dine-in and carryout only. 50% of the pizza purchases will go to support Alisha's trip to New Jersey that day.
   Thank you Skip!!!
   
   WOW!!! What a day!! Things went very well with the Straw Hat Pizza Fundraiser!! Thanks to all the hard work of everyone who told friends and family about it, stood outside with signs and the awesome staff at Straw Hat we were able to raise....drumroll please..... "sound of drumroll here"....$864 from pizza sales!!!! Also in the couple of days prior up through Thursday night many people gave cash directly to help Alisha get to New Jeresy in the amount of $347!!!! WE THANK YOU ALL SO VERY MUCH!!!
   


2. Car Wash Fundraiser at Firestone: Saturday, April 25, 2009 we will be holding a car wash fundraiser from 8am til 2pm at the Firestone located at 10407 Folsom Blvd in Rancho Cordova. The manager at Firestone, Danny, has offered a coupon for 'one free oil change' to be given to the first five washed vehicles Saturday morning (good only at this Firestone location).
   Thank you Danny!!!
   
   Wow Oh Wow Again!!! Today was the Car Wash Fundraiser and it went splendedly!! Big Thanks to everyone who came out to help wash cars!! A Special Thanks to the parents who brought their kids out to lend a hand washing cars!! Vaughn, Thanks for the use of the Easy Up Shade canopy!! Super Big Thanks to all of the people who stopped by to get their car washed!! Our total for the car wash today was $782!!! THANK YOU ALL FOR YOUR HELP!!!
   
   We would also like to thank a few businesses that gave a little to help us a lot. First, Firestone for allowing us to hold the car wash at their location and the oil change coupons. Little Caesar's Pizza on Zinfandel Drive for providing 5 pizzas for our volunteer's lunch. Absolutely More Bounce (http://www.morebounce.net/) for donating the snow cone machine and supplies. Also, Raley's for the ice to keep our drinks cold and making the snow cones!!
   
   
3. A friend of ours, Melissa Lilley, is a Mary Kay consultant and she is generously donating 20% of what she earns over the next four weeks!!!! WOW!! Thank you Melissa. To order through her please go to the following link www.marykay.com/mlilley .
   
   We look forward to seeing a lot of our family and friends at these events and meeting some new friends!!! Thank you for your support and please pass the word along about the excitement this coming week!!
   

The Center for Pediatric Feeding and Swallowing

We are so excited to be excepted into this very much needed program! They say it better then I do. "The Center for Pediatric Feeding and Swallowing is the first of it's kind in New Jersey. St. Joseph's Children's Hospital offers a unique, methodical, and multidisciplinary approach to the assessment and treatment for pediatric feeding and swallowing. It is designed to focus on the medical, motor, and learned patterns that often accompany this dysfunction." They have helped so many children with extensive feeding problems we feel very blessed and we know that Alisha will do very well there.

We also want to help put the word out about this great program. It is a big hope of ours to get the information to others who need the same help. We wouldn't have known about this program ourselves if not for the kindness of others sharing the information with us.

"Feeding issues affect approximately 25-40% of children, from newborns to adolescents. Approximately 80% of children with developmental disabilities have a feeding problem. Feeding and swallowing problems are symptoms often associated with complex medical diagnoses. The mission of the Center for Pediatric Feeding and Swallowing is to provide a collaborative medical, motor, and learning-based approach to children with complex feeding and swallowing difficulties."

There is a great need for what these people do. If you would like more information go to www.feedingcenter.org

Hi. I'm Alisha.

Alisha just turned five years old and has Cornelia de Lange Syndrome (CdLS). She does very well and she has greatly benefited from having many wonderful therapists, doctors, nurses, family and friends. Alisha, like all children, is so much more then her diagnosis. She is very smart and has always loved therapy. Alisha has always thought that it was a lot of fun to climb an obstacle course more than three times her height to get one puzzle piece and then climb back over the whole thing again to put the piece in the puzzle and then climb back over to get the next puzzle piece. She worked up to a 24-piece puzzle and then moved on to the next exercise!! She has tons of personality and loves to make people laugh. Alisha also loves to tease her brother and sister.

Alisha is missing fingers on both hands and uses her hands as different tools depending on what it is she needs to do. She is also very small for her age but is very healthy. CdLS kids are typically small so they have a different growth chart than the typically one used at a doctor's office. Alisha weighs 28 pounds and stands 37 inches tall. She had a LADD surgery along with a feeding tube placed when she was just 11 months old. She was walking at 13 months old with her feeding tube and we are very proud of her. Alisha's mom and grandfather made her a "push toy" that held her pump and food bag and allowed her to push/pull it around because she was too small to carry the pump and bag and nothing was going to tie her down. At the time she weighed just nine pounds. Now she carries her pump in a small back pack everywhere she goes.

I have always connected her tubing to her stomach no matter where we were -- even if it was sometimes uncomfortable for me because I wanted her to know that there was nothing wrong or bad about her pump -- we don't need to treat it like a secret. Alisha had always been mostly fine with it considering that she is carrying a backpack every where, which has some really annoying aspects to it. Just think about the reality of that for a minute, in California on the playground in the summer, etc. Anyway, I consider her to be quite the trooper and she doesn't complain much even though I know how much she just wants to be free of it all. A couple of months ago we had a late morning and she started to cry when I connected her tube in front of some of her classmates. That was a first. I picked her up and walked away and when I asked what was wrong she said "I don't want them to look at my belly." So, I don't do that anymore. At home or with family I hook her up wherever but we always do it before school.

Alisha is so ready to learn to eat she has even started to swallow her own medicine and eat more food around the house but still not nearly the amount to even change her pump feedings but she really wants it!! To me that is already half the battle. I know that it will be hard but I also know that she is a very happy energetic determined little big girl!

For more information about CdLS go to http://www.cdlsusa.org/