Monday, June 20, 2011

Surf's Up Dude!

On Sunday June 19th, Little J got to participate in Max's Day with Ride A Wave in Santa Cruz.

I cannot express in words just how amazing this day was for Little J. This is his second year participating, and this year was just as fabulous as last year. Little J got to kayak and boogie board, he also got to surf.....STANDING UP! Last year they put him on a special surf board equiped with a seat, but this year they got him up on that board standing tall! Anytime he was in the water, his face was just a big bright smile and lots of giggling! The added bonus to this day was that several of Little J's classmates and fellow angels participated as well!

The people who put this event together and all of the wonderful volunteers really are beyond amazing! Little J was assigned 2 beach buddies, these two young men chatted with him, got him from one activity to the next and took him back to his favorite boogie boarding at least 15 times! It is just so amazing to see your child do things that you never in your wildest dreams imagined they could do much less would get the opportunity to do.....this organization and all of the volunteers out there made it happen! My heart is full......

Did you see the Vivnet Give Back Project link on my sidebar? Please take a moment to click on the link and vote for Foundation for Angelman Syndrome Theraputics to win! Angelman Syndrome has been cured in a mouse.... a few clicks of your mouse could bring us one step closer to the cure for Angelman Syndrome in people!

Thursday, June 16, 2011

Princess J Update!

This last year has been amazing for Princess J! She has been enrolled in a speech immersion program since her 3rd birthday. She started out barely talking and has just come so far! We can't stop her from talking now! The school has been a wonderful experience for her and she just loves it, her teacher and her friends.

Just before her 4th birthday they tested her to see how she was progressing. Apparently they kept her in while the other kids went out to play. She did so well concentrating and thinking about her answers and trying to make sure she got everything right. Her teacher told me that in all the time she has been teaching, Princess J is the first student she has ever given the entire test to. She passed with flying colors! As soon as she was done, the teacher told her she could go outside to play....just as the teacher said that, the bell for the end of playtime rang. Our sweet Princess J balled up her fists and put them on the table and said....awwwww! I missed playtime! Her teacher said it was so cute and she felt so bad making her miss play time!

Anyway, with the results of the test, it means that Princess J no longer qualifies for the speech immersion class at the today, will be her last day in the classroom. She will still continue to receive weekly speech sessions just to keep her progressing for kindergarten. We are now on the hunt for her next school. We have her on a waiting list (she's #1) at a school that was recomended by friends and that after visiting, Princess J really liked. We won't know if she makes it in until August.

Princess J's current favorites:
Food: Mickey Chicken and French Fries, Cheetos and Pretzels (She's still a super pickey eater!)
Movies: Cars and Toy Story
Toys: Ham and Buzz Lightyear (from Toy Story) and Lightning McQueen
Colors: Green and Pink
Wearing Ballerina dresses and sparkley shoes
Cartoons: Pocoyo
Songs: The Duck Song 1, 2 and 3!
Favorite Friends: Nathan, Samantha, Elizabeth, Luis, and Brian

Current Phrases:
Not too much
Just a little bit
That's sooooo silly!
Jordan can I borrow it?

Wearing size 2T and sometimes 3T
Shoe size 6 or 7 toddler

Loves being read to and is beginning to read on her own!
Before we leave the house, she has to tell her toys staying home not to talk to eachother!
Unfortunately not potty trained yet!

And, because you know I have to mention it.....have you voted in the Vivnet Gives Back Project for Foundation for Angelman Syndrome Theraputics (FAST)? Please take a moment and click on the link on my sidebar and click to vote and help find a cure for Angelman Syndrome!

Wednesday, June 15, 2011

Angelman Syndrome-Finding a Cure


As many of you know, our son Little J has Angelman Syndrome. Life with an angel can be very challenging, but along with the challenges come the amazing blessings that Little J brings to our family. As of today Little J is a first grader...soon to be second grader! He is doing so well in his class at school. He loves it so much! It's so nice to see that amazing smile on his face everyday when we take him to school. It's a testament to how wonderful the teachers and aides at his school are!

Little J is becoming quite the ladies man! He is in love with the girls! He is smitten with one particular classmate. Another angel who recently moved to our area with her angel brother and family....and who would have thought that they'd end up living 8 doors away! While his heart belongs to one.....he is not opposed to having an audience of ladies...I picked him up from school for a neurology appointment one day and he happend to be on the playground holding court with 4 adorable young ladies who were chatting with he and his aide. He was very happy to have their attention and was not too please when mom dragged him off the playground.

Little J just finished up his little league season with many of his friends from school. It was wonderful to have family come out to see him play and his teacher was at quite a few of their games this year too! It was a fabulous season with G and I volunteering as team organizer and coach....all while keeping Little J out there and managing Princess J and Peanut J! Thank goodness for our friends (and you know who you are!) for helping us out with the two smaller J's at games!

Later this summer Little J will be having a heel cord lengthening surgery. Currently he is a toe walker. He's very accomplished at it, but unfortunatly over time it will be become painful for him to walk and eventually he won't be able to. We are not looking forward to this, but it has to be done. He will be in a double cast for 6 to 8 weeks! Yikes! What is my active little angel going to do! I see a bit of grumpy angel time ahead! We welcome any prayers and good thoughts as this gets closer, that mommy and daddy can handle the anxiety and the recovery and that the surgery will go smoothly and recovery will be uncomplicated and quick! We also pray that the outcome will be Little J walking flat feet on the ground and for a succesful end result! We'll keep you posted on when the surgery will take place and how it goes...but start those prayers now if you don't mind!

I hope you will take a few minutes to watch the video above that I've shared. Foundation for Angelman Theraputics (FAST) has been working hard towards finding a cure. The science is there, the research is there, but the only thing missing is money! Vivnet has been running their Vivnet gives back promotion on Facebook and currently FAST is in the finals to win a $250,000 grant! This would mean so much to the work that FAST is doing! Here is a description of FAST (taken directly from the Vivnet Gives Back Project website):

The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy. The Foundation is committed to assisting individuals living with Angelman Syndrome to realize their full potential and quality of life. We are confident that our goals are now within reach and together, with your help, we will change lives. You are our driving force; please donate generously and bring us one step closer to realizing our mission. FAST is run by an all volunteer staff and board who dedicate their time and expertise towards finding a cure for Angelman Syndrome. Our operating expenses are generated through our annual Gala and through donations specifically for that purpose. FAST does not have any paid staff. Donations otherwise generated throughout the year go directly to supporting research aimed at finding a cure. Our goal is to bring practical treatment into current medical practice as quickly as possible. It is our hope that grants we fund will lead to additional research support from government agencies and other funding sources.

You can visit FAST by clicking on the link I've shared above! You will find all kinds of information on Angelman Syndrome and their quest to find a cure!

Ok, so now that you've caught up on Little J, read a little bit about FAST and Angelman Syndrome, I need a huge favor! See the Vivnet Gives Back Project banner on the side of this revived blog? Please take a moment and click on it and vote for FAST! This program will be running for the next 10 weeks and you get one vote per day. Please bookmark it and go back and vote every single day! The little clicks of your mouse everyday for FAST could mean a cure for Angelman Syndrome and provide a roadmap for cures for may other disorders/diseases. They really believe that finding a cure for Angelman Syndrome could lead to some answers for other disorders and diseases including Alzheimers and Autism! Please help us! I know that one day I could potentially hear the sweet sound of my Little J's voice!

Tuesday, June 14, 2011

Reviving the Old Blogity!

Ater a very long hiatus....I'm bringing the blog back! There really needs to be at least 36 hours in the day, but I miss this blog and hope that a few of you do too! The blog will be back tomorrow with a very important post about how you can help find a cure for Angelman Syndrome.....all it takes is a click or two of your mouse! If you'd like to get a head start on helping us out you can support Foundation for Angelman Syndrome Theraputics (FAST) in the Vivnet gives back project by clicking on the link on the side of my blog! Check back tomorrow for an amazing video about FAST and Angelman Syndrome...and an update about our sweet angel Little J and how this could greatly impact him!