Angelman Syndrome Walk-a-thon

We had such a fabulous day at the Angelman Syndrome Walk-a-thon in Sacramento! It's always so much fun to catch up with other families as well as meet new ones. This year there were over 550 walkers at the Sacramento site!

Joshua raised so far a total of $1205! We have amazing friends and family! Joshua's donation page is open until the end of September if you would still like to donate. The Angelman Syndrome Foundation is trying to meet their fundraising goal of $1 million dollars this year!

Angelman Syndrome Walk-a-thon update!

Wow! Our friends and family really rock! With less than 24 hours to go, we are only $250 away from reaching our fundraising goal for the Angelman Syndrome Foundation! Yay Little J!! Tomorrow is going to be an amazing day walking with all the other angels and their families! We are so excited! We've got the minivan packed, the video camera ready as well as the camera! Josh has been working so hard on his walking skills, that this last Wednesday, he walked about 30 feet unassisted! AMAZING! Praise God for all my Little J's progress! He has really given us very knowlegable and caring professionals to help Little J meet all of his potential!

Thank you to all of our family and friends who love and support Little J! If you would still like to make a donation to help us reach our fundraising goal, you can go to his fundraising page here:

http://www.angelman.org/JoshuaSchmeckTeamPunkypants

There is also a button on the side of the ol' blog here as well!

Thanks again!

Angelman Syndrome Awareness!

Dear Family and Friends,
In just a few days, we will be attending out second Angelman Syndrome Foundation walk-a-thon. We are so excited to see all the other angels and their families and for a beautiful day! There is so much going on in the research area of Angelman Syndrome and there are some exciting things in the pipeline. There have been many developments that bring us hope for theraputic treatments and hopefully someday a cure! Josh recently finished his supplement study at UC San Diego, we hope to participate in more studies as they become available. He is still enrolled in the Natural History study, which basically tracks and studies the growth and development of those with Angelman Syndrome. While there is much on the horizon, none of this can be accomplished without your help! Every year, we come together to raise awareness and money about Angelman Syndrome and for The Angelman Syndrome Foundation. They are currently the primary funders of research grants and studies. They also provide many services to families of those with Angelman Syndrome.I know with the economy in the state it is, that times are tight for everyone, but anything you could donate to Josh's fundraising team would be greatly appreciate.

We are also excited to share with you some of Joshua's many accomplishments in the last year. Josh has been working very hard at many things over the last year! We have been so fortunate to have so many professionals in his corner assisting him and rooting for him all the way. I think one of his biggest accomplishments this year has been learning to walk unassisted! While he still can't walk by himself 100%, he has really made huge progress in this area, especially in the last couple of weeks. Last week at therapy, he walked 11 steps unassisted! His physical therapist Sheri Tom has been working with him since just before he turned 3 years old! She has worked so hard with him and it's paying off!

This is also Josh's second year in preschool. He LOVES school so much! Last year, he was the baby in the class and all the other kiddos really took the time to make him feel good and to always help him. This year, he's the big boy in class! His teachers and aides have been working with him on many directive skills, art skills, and self help skills. He is doing so remarkable! I love watching him in the morning hold someones hand and carry his lunch to the refrigerator and put it in! It is so cute! I think his favorite is circle time, his teachers say he likes to be in the thick of things. Doesn't want to miss out on any fun! He is sitting unassisted in a toddler chair at school now too! He's just growing up so fast! He is eligible to transition to Kindergarten next year. I'm still on the fence about that, since school starts in September and he doesn't turn 5 until December, but we'll see. His new teacher if he does transition is great and I think he'll have a great time. I know he will miss the kids remaining in preschool and I know he will miss his preschool teachers and aides!

Josh and Jocelyn are very close. Jocelyn takes really good care to help her big brother when he needs it. They are both very empathetic to one another as well. When one is upset, they both are upset. They love to entertain eachother as well. While Josh never tires of his little sister, there are times when our drama queen is done with him though....he just laughs though!

I know this email is late getting to you, we've had our hands full this year with our new little peanut on the way and time just slipped away from us. This is still an endeavor of great importance to us. We would be overjoyed to see in our lifetime theraputic treatments to make our sweet Joshua's life and the life of other angels better and easier. Ultimately, we would love to see a cure for this disorder! Please help in anyway you can! If you would like to attend the walk with us, we would love to have you! Josh would be overjoyed at the support!

Donations can be made at: http://www.angelman.org/JoshuaSchmeckTeamPunkypants or by making a check to the Angelman Syndrome Foundation and getting it to either Greg or myself by Friday. The online donation is a safe and secure site set up by the Angelman Syndrome Foundation. This is the easiest way and you can print a copy for your tax records!

If you are interested in walking with us in Sacramento, please email me and I will get the details out to you!

Love,
Laurie, Greg, Josh and Jocelyn

You can also click on the link on the side of my blog as well!

Support Josh in raising awareness and money for Angelman Syndrome!http://www.angelman.org/JoshuaSchmeckTeamPunkypants/Sacramento Walk-a-thon May 16th 2009Join the Fun!

Princess J turns 2! (yep...more catch up!)

Seriously, I cannot believe this little girl turned 2 last month! She is just so much fun to have around....drama and all!

She is really becoming quite the character and she is so stinkin' smart too! She's silly, she's independent and she's super caring towards Little J. She does not like it one bit if you raise your voice and Little J and she more often than not makes sure he has a toy to play with. He's about the only kid she will share with at this point. She loves to dance! Oh my gosh! Anywhere she hears music, she will start shaking her booty....even in the pediatricians waiting room! Too funny! A few weeks ago, I asked her where her groove thing was and she pointed at her little bottom and started shaking it! I was absolutely hysterical! She also knows she's the princess too. We were watching some show with a princess on it and I asked her where the princess was and she pointed to herself....way too funny!

Her favorite things right now are balloons, Yo Gabba Gabba, Dora, The Backyardigans, Ni Hao Kai Lan, and Jack's Big Music Show. She loves to sit and color and she loves to look at books! She's still an extremely picky eater. At her last check-up she still weighed the same as when she was 18 months old. She grew taller, but didn't gain any weight. So now, we're trying to get her to eat a little more. She's not all that interested though. She does not like to try new things, but we keep putting them in front of her!

She loves to run free and explore everything everywhere! She's such a sweet and good little girl. I just love spending time with her and cherish everything about her....including all the drama! LOL!

March of Dimes (more catch up!)

Recently, the CHP had a Tip a Cop event at a local eatery to raise money for the March of Dimes. Princess J and I dropped Little J off at school and headed over to meet up with Verna and Jayda and Lizz and Little Max. It was fun having a yummy breakfast and catching up with good friends. G even stopped by for a cup of coffee! Fun times!

Catching Up...

I had so many good intentions for catching up with this blog and keeping some momentum going. Unfortunately, life threw a few curveballs in the way....and is still trying to throw some still! We had a beautiful Easter Day, just the family enjoying some simple traditions. We stayed home and had a little Easter Egg hunt out on our front lawn, enjoyed a day of fun with Easter Basket goodies and a yummy ham dinner.

Unfortunately, later that evening Little J got sick. He was running a 102 temperature for most of the night and was up and down not getting much sleep. As Monday progressed he seemed to get worse, even to the point of gagging whenever we put something in his mouth, whether it was food or drink. I ended up taking him to the pediatrician, who confirmed it was just a virus and to just give him small amounts of liquid at a time and build up until he could tolerate it. I ended up calling her back at 4pm, because by now, even the sight of his motrin or tylenol was making him gag. I kept trying to give liquids, but by now we couldn't keep his temperature down, because he wouldn't take in the medication and we were getting close to the time he needed his seizure medication. By Monday evening, he hadn't slept much since he woke up Easter Sunday. He started to exhibit some of the signs of his drop seizures (temperature and lack of sleep are huge in bringing on his activity). At 5:30pm, Little J and I headed off the the local ER. That place was jam packed! CRAZY! Everyone was so nice though...even most of the other patients waiting to be seen! It took almost 3 hours before we got back to be seen and Little J was a champ in the waiting room! Once we were finally seen, the nurse and the doctor who cared for him, were AMAZING! They were so nice and sweet with Little J. I knew he wasn't feeling well, because he wasn't flirting with the cute nurse either! LOL! Anyway, they were able to give him something to stop the gagging and vomiting...Yay! They had me give him fluids for a little while, then had me give him his seizure medication and kept us there to make sure he kept it all down and that his drop seizures subsided. Finally, they gave him some benedryl to help him get to sleep, since he was sooooo exhausted. Once they felt confident and knew that I was comfortable, they released us with a prescription for more "anti gag" medication and we were on our way at 11:30pm. I put Little J in the car and he was out like a light before I even backed out of the parking spot...Yay! He slept like a log! I even headed to the drive-thru pharmacy to pick up his prescription and finally hit a drive thru to eat something and he slept so peacefully! Yay!

After a week of spring break recovery, on Monday he was ready to go back to school. He was super excited and Princess J was happy to get rid of him for awhile and get out of the house! LOL! While he was in the car and I was getting his stuff ready to get out, he saw one of the aides from his classroom Aaron, and went completely out of control excited! Yay! He's been back in school for two weeks and now over the weekend, his fever and cough have returned. OY! We were off to the pediatrician again yesterday, and while everything is clear we decided to give him an antibiotic, just to be safe, since this is his third bout with fever and this cough keeps coming back.

As of right now, 3 out of the 4 of us are coughing, but only Little J is has gotten the fever. We had Princess J checked out at the pediatrician yesterday as well.

Thankfully, no one has Swine Flu! LOL!

Enjoy the photos from our Easter fun...before all the sicky drama! LOL!