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Monday, December 31, 2007

A visit with Santa.......poor Santa!



So, we spent the Christmas holiday with G's family in Redmond, Oregon. One of the things I had planned to get done before we left was the Santa photos. Unfortunately, I didn't get it done, so while on holiday, we had to trek out in the snow to get this right of passage done for the little ones. It turned out to be lots of fun....even with a little mischeivious Little J and a not so happy to meet Santa Princess J.

Little J went first, we thought maybe if Princess J saw him with Santa, she might be okay with it. Little J put on quite a show for all the onlookers as he took his Santa photo. First, Little J yanked on Santa's beard. Thankfully, that stayed put. His hat however was not so fortunate. Little J was able to get Santa's hat completely off! Little J was quite excited to hear all of his fans laughing and clapping for him. Once we got him under control and the giggle fest was over, we got a great photo!

Next, Princess J was up to the plate. At first she looked at Santa with wide eyed astonishment, and then she turned her face to the camera and started screaming! Then she stopped momentarily to look at Santa once again and then the screaming started once again and the tear flow was quite abundant. The photographer did a great job capturing the looks at Santa and then the screaming. We opted to go with the crying photo, because.....it was priceless.

All in all, my little ones gave Santa quite a run for his money. Thankfully, Santa was one awesome guy and so sweet and kind to both my little ones even with their mischevious behavior!

Thanks Santa!

Monday, December 10, 2007

Hammy!

I think Princess J has figured out that mommy will always have the camera out. At first she was not too cooperative, but now she is hammin' it up. Today, Princess J went to her first birthday party (Happy Birthday 1st Nathan!). We've figured out that she will like cotton candy (she couldn't take her eyes off of the cotton candy making machine), she will like lumpia (she tried to steal one off of mommy's plate), she's willing to share (she offered up her binky to the birthday boy), and she does not like clowns (a hello from the clown got loud wailing and screaming). So here are a few shots of her dressed and ready to go to her first party.



Saturday, December 08, 2007

The annual Christmas Card Picture Party!

Here is a preview of some of the fun we had today trying to get a photo for our annual Christmas Card! None of these are the final selection, so you will just have to wait until your comes in the mail!!





Wednesday, December 05, 2007

Where have we been?

Actually the question should be where haven't we been? Things have been super busy here, but then again I think they always are super busy. I'm looking forward to the Christmas holiday to sit back and relax a little. In the last couple of weeks, we've been to 3 doctor appointments, registered Little J for school, had meetings to put together his education plan, said goodbye to two great therapists, changed our daily schedule a bit, scrapped a little, cleaned a little, celebrated an 8 month birthday, celebrated a 3 year birthday and had a first day of school! Wow!


We took this photo the morning of Little J's first day of school! He was loving his big boy backpack!!! He turned 3 on Saturday and was off to big boy school that first Monday! I still look at him though and see my little baby boy! His first day of school went really well. He could have cared less that Princess J and I left. As a matter of fact, I'm not sure he really cared that we came back to get him. He was having so much fun with his teachers and his new classmates! Apparently he was quite excited to play in the playgoround during recess too! Can't wait to see him in action there! He seems to be ready to get up and go every morning now. Before going to school, he would wake up around 7:30 am and kind of lounge around in bed until 8am. Now, he's awake at 6:30 and ready to be out of bed by 7 am! He didn't get to go today, because he had another appointment that we couldn't change, and I think he was a bit disappointed.



Princess J is 8 months old now! I cannot even believe it! Her little personality is definately coming out. She loves to scream just to hear her own voice! Her favorite is that high pitched scream for sure. She makes lots of faces from pouty to worried. Of course my favorite are her sweet smiles. I think she's happy that Little J is in school during the morning. She and I had so much fun on Monday going to Barnes and Noble and reading some stories. We also hit Babies "R" Us to pick up a few things for Little J. The cutest thing though was that we walked up to the Starbucks counter inside Barnes and Noble and the cashier said "Hi" and Princess J repeated it back! We haven't heard it again yet, but she's definately beginning to form a few words. It was nice not having to haul the stroller out, since she loves to walk around in the Baby Bjorn! I miss Little J while he's in school, but I know he's well taken care of and having a good time, so I am enjoying my alone time with Princess J! I can't wait to get her signed up for some baby and me classes.

I love these photos of Little J and Princess J. I can't wait to get them printed and do some more scrapping. I have been totally inspired and have so many cool ideas in my head....along with all the things that Rocio enabled be to buy that I really want to scrap. Now, I just need to find the time.

Sunday, November 25, 2007

More Prayer Needed.....

Please send prayers up for The Lyons Family. I don't know them personally, but have been following their blog and Julie's battle with cancer. What a strong woman she was and her trust and faith in God during her battle blew me away. Even though I don't know them in real life, my heart was crushed when I opened their blog today to the sad news of her passing. I know that her husband and their 3 young children as well as their friends could all use our prayers that God might comfort them during this extremely difficult time.

Saturday, November 17, 2007

Please Pray

Please pray for the family of Officer John Miller, who lost his life in the line of duty last night. We thank him from the bottom of our hearts for his service to the state and his community. Our hearts and thoughts are with his wife and children.

The following story was taken from sacbee.com written by Blair Anthony Robertson.

A California Highway Patrol officer from Lodi, who graduated eight months ago from the CHP Academy in West Sacramento, died Friday night when his patrol car slammed into a tree after searching for a suspected drunken driver.
John Miller, 32, was patrolling in the Dublin area around 9:15 p.m. when he lost control of his car on a sharp bend on two-lane North Livermore Road, according to a CHP news release.
Miller had just finished looking for a motorist that had been reported as driving recklessly and possibly under the influence, according to the CHP statement.

Miller, who was driving alone, crashed 3/4 of a mile north of Interstate 580. Shortly afterward, Livermore police located the suspected vehicle and arrested Luis Solano, 21, who was charged with DUI, evading a peace officer and driving without a license.

In a written statement released Saturday, Gov. Arnold Schwarzenegger said, "Maria and I join all Californians in mourning the loss of Officer Miller, who gave his life in the line of duty while honorably protecting his fellow citizens. California's law enforcement officers protect our communities day in and day out and words cannot adequately express how grateful we are for their service and sacrifice. Our thoughts and prayers are with Officer Miller's loved ones as they mourn the loss of a son, father, friend and fellow officer."

Capitol flags will fly at half-staff in honor of Miller. The officer is survived by his wife, Stephanie, and two children.

Thursday, November 15, 2007

A Reader!!!

All of you know, that I am a book lover! I love to read! I think that it was because my dad was a reader and I still always remember going to the bookstore with my dad . I remember being excited to go, to get a new book and to get lost in the story. I still love to get lost in a good book to this day. Imagine my excitment when G took Princess J and decided to read her a book. The most exciting thing though was her intense concentration as daddy read her the story! I couldn't help but snap a few photos! This has now become a nightly routine too. Everynight, daddy reads a couple of stories to Princess. Daddy is a good story teller too. He's really good at all the sound effects! Now that we've started this, Princess J will not settle down until she's had her story time! Yay!! I hope that she develops the love for stories and reading that I have. I would love to take her to the bookstore and for her to have all the same excitement that I had as a kid. What a fun way to share something with her that my daddy shared with me.

Tuesday, November 13, 2007

Starting to Catch Up!


So, I've been promising photos of our extraordinary October for ages now. I thought I would finally share a few at a time over the next few days. These photos were all taken on or just after our visit to the pumpkin patch. We had so much fun, making the short trip up to the pumpkin patch and just checking out all the pumpkins. Little J had a great time riding around in the wagon and Princess J had fun getting to know some of the pumpkins. It was so nice that my parents were here to go with us. We actually got a family photo that didn't turn out to bad!

G did a great job on this years pumpkins too! They match our kids to a "T". Princess J has two little bottom teeth, so as you see, her pumpkin does too! Little J, well for those of you who know him, you know he has got a mouthfull of teeth that are always showing as he grins from ear to ear, so his pumpkin is too!


For Halloween, we didn't have too much planned. We trick or treated at a few of the neighbors houses and then stayed home to answer the door. Both Little J and Princess J enjoyed seeing all the little ones coming to their house to get candy. We were lucky enough to get yet another family photo, that didn't turn out half bad either. As you can see Little J was quite excited to be Pablo from the Backyardigans. Princess J took herself a little more seriously as a little angel princess. All in all, I think the kids had a great time. Next year should be even more fun with Princess J I am sure upping her diva game. I'm sure we'll have to hit up the whole neighborhood for her.




Wednesday, November 07, 2007

Good Times!


I have so many photos to upload and get printed, but with everything going on around here, I have simply been to lazy! I will get it done this week, but I'm not making anymore blog promises!! LOL! I had to share this one though of Princess J rockin' it in her excersaucer. She's also showing her fashion sense with that perfect little bow!

Friday, November 02, 2007

Your Inner Californian?

I don't have my pictures uploaded yet, but tomorrow I will get it done! I'll update then. Until then try this quiz......


<
You Belong in San Francisco

You crave an eclectic, urban environment. You're half California, half NYC.
You're open minded, tolerant, and secretly think you're the best.
People may dismiss you as a hippie, but you're also progressive, interesting, and rich!

Sunday, October 21, 2007

WHY?

This is just another random post here, until I can get my photos uploaded. After our adventures out and about yesterday, many occurences left me asking why.........

Why is it that when you are in the grocery store and there is this cute little old couple trying very hard to manuever themselves and there cart around is it that no matter where I move to get out of their way they can still run me down?

Why do order takers at restaurants tell you something will take 14 minutes when it takes more like 20?

Why is it, when you are in line at the drive-thru at Starbucks (and a very long line at that) that the person in front of you waits until they get to the pick-up window to start digging for the money for their order? I mean, they told you how much it was 20 minutes ago at the order speaker. Couldn't you start getting your money out when the car in front of you was at the window at least? Oh yeah, you were busy talking on your cell phone, so now I have to wait for you busy arse.

Why do people insist on walking down the middle of the parking lot aisle?

Why is it that I always, no matter what when I am in a hurry I pick the slowest lane at the grocery store?

Why is that when you go to get something that you are craving, inevitably if the place is going to be out of something, it's going to be the something that you are craving.

Why does the Wal-Mart pharmacy tell you that your prescription will be ready in 1 hour and then when you return almost 36 hours later, they tell you it will be another hour?

Why is it that your kid has a clean diaper right up until the minute it is time for you to leave to make an appointment?

Why if you bring extra clothes for your kid will he/she stay clean, but if you forgot the extra clothes they will get extraordinarily messy?

Why does your kid always fall asleep in the car when you finally arrive at your destination, not during the 30 minute car ride?

Why in Fantasy Football, if the experts on TV tell you that you must start someone in your fantasy league, they end up having a crappy game and getting you negative points?

Why is it when you don't have time to scrap, you have all these fabulous ideas, but the minute you sit down to actually do them, you can't remember what they were?

Okay, that's enough for now. I know there are more "why's" I want answers to, but I'll save those for another day.

Thursday, October 18, 2007

A Fluff Post because....

Life has just been way to serious lately! Oy! I think it is finally starting to settle, but I'm tired of thinking about it for right now. So, I'm making a list of all the crazy shows I'm watching these days! I think it might honestly look like I sit in front of the television all day eating bon bons, but you all know the truth....right?

Dancing With the Stars
The Bachelor
Law & Order SVU
Gordon Ramsey Kitchen Nightmares
Survivor China
CSI
ER
Womens Murder Club
COPS
America's Most Wanted
Desperate Housewives
Brothers and Sisters
Private Practice
Las Vegas
Young and the Restless
Dallas Cowboy Cheerleaders
The Hills
Tori & Dean: Inn Love
Pageant Place
How Clean Is Your House?
You are What you Eat
Diagnosis X
Whatever Korean Drama is on AZN
Shot at Love with Tila Tequila*
I Love New York 2*
Yo! Gabba Gabba**
The Backyardigans**
The Wonder Pets**
Curious George**
Sesame Street**
Raggs**


*Disclaimer: While I love these shows, the only reason I'm hooked, is because it's like a train wreck that I can't take my eyes off of. :D

**2nd Disclaimer: These are Little J and Princess J's shows. While I do know all the words to these shows, I am forced to watch these!! :D


Sigh.....I do watch way to much TV.

Princess J's Favorite right now!

Monday, October 15, 2007

Angelman Syndrome in the News



Colin Farrell Reveals Son's Health Battle
MONDAY OCTOBER 15, 2007 02:30 PM EDT
By Tim Nudd
Photo by: E.L. Woody / Splash News Online
Colin Farrell has revealed that his 4-year-old son James suffers from a rare neuro-genetic disorder called Angelman Syndrome – but that he's a brave and happy child. "The only time I'm reminded that there is something different about him – that he has some deviation of what is perceived to be normal – is when I see him with other 4-year-olds. Then I go, 'Oh yeah,' and it comes back to me," Farrell tells the Irish Independent. "But from day one I felt that he's the way he's meant to be." Farrell says James shows "amazing courage," and adds: "[I'm] incredibly blessed to have him in my life." The 31-year-old actor shares custody of James with ex-girlfriend Kim Bordenave, the boy's mother – whom Farrell credits with helping James get the help he needs. The child's early years have been a struggle, Farrell says, but recently the family enjoyed a major breakthrough. "He took his first steps about six weeks ago, and it was four years in the making," Farrell says. "It was incredibly emotional. There wasn't a dry eye in the house."
Angelman SyndromeAngelman Syndrome is characterized by developmental delay, speech impairment, movement or balance disorder, excessive laughter and even seizures, according to the Angelman Syndrome Foundation. Children who have the disorder are often not diagnosed until they are between 3 and 7 years old. But Farrell refuses to characterize the condition as a disability. "I have never thought of my son as being someone with a disability," he says. "It goes back to special needs and what is a disability and what isn't." Coincidentally, Farrell helped promote the Special Olympics before his son's diagnosis. "I experienced the overwhelming effect of being around those athletes pretty much just before my son was born," says Farrell. "It's mad the way the world works."

Bravo to Colin and Kim for bringing this to the public eye! Love to see awareness raised for Angelman Syndrome!

Friday, October 12, 2007

Long Time No Blog....

Things have been crazy busy lately....okay, they are always busy, but so crazy that I've neglected this blog!

We've had my parents from Switzerland visiting, done lots of shopping, taken a trip to San Diego, begun participation in a research study for Angelman Syndrome, spent some time in an ER, started new medications, had some restful nights, had some not so restful nights, watched new shows, missed favorite shows, scrapped a little, but not enough, neglected some things, but have always put family first. I'll be back to update when I'm a little more rested.

Peace out!

Thursday, September 27, 2007

6 Months Old!

Our beautiful Princess J is 6 months old today! I cannot believe it! She just amazes us everyday with her sassy little personality! With everything that has been going on for Little J, our little princess was not about to be outdone in the attention department. She knew that Little J was taking the limelight, so she knew she had to step up her game. This little girl, in the midst of all of the craziness with Little J decided that it would be a good time to show us a few of the skills she's been working on. On Sunday afternoon, she showed us that she had indeed figured out how to press the play button on her music box in her crib. Then, on Monday afternoon while I was at the pediatician with Little J, she decided that it would be a good time to show Daddy her mad skill of getting up on her hands and knees! It won't be long before this one is on the move!

Honestly, I was a good mommy and took a few photos of Princess on her 1/2 year mark, but once I took the photos, the battery died. I will upload some new photos soon!

Princess J wants to wish her little friends Katelyn a happy 1 month birthday and Mari a happy 10 month birthday! The 27th of the month appears to be a good day for sweet little girls to be born!

Monday, September 24, 2007

Update on Little J!

Thank you so much for your prayers! After a long day today, we think we may have some answers with good news. Not without some frustration, but all in all I think Little J will be back to his sweet little self soon.

After our visit to the ER last night, we were told that the neurology department would contact us for follow-up. I knew they opened at 8:30 in the morning, so I got up to get a jump start and called them. I spoke to a nurse and she told me that Little J's regular doctor was on vacation, so they would talk to one of the other doctors and call us back. By 12 noon, we still hadn't heard anything and Little J had a couple more of his gagging episodes, so I called and left a message. By 2pm, poor Little J had not been able to sleep without waking up gagging. So, I called our regular pediatrician and they got him in. After she examined him and observed his behavior a little, she believes that he has acid reflux and that the some of his behavior is more related to his being so tired and not necessarily seizure activity. She still wants him to see his regular neurologist for an EEG and check, but we're hoping that this new prescription will help.

In the meantime, she called the neurology department to try and light a fire under them to get him an appointment. They told her that they were going to start him on some seizure medication without even seeing him! She tried to tell the nurse, that she wasn't sure that his behavior was actually in need of seizure medication, but that he should be seen and assesed before a decision was made. Well, they called and left a message for us that they want to start this medication.

I plan on calling them tomorrow and letting them know that I am not giving my kiddo this medication, when they have not even seen him! The doctor trying to prescribe this for him has never even met him! I am so furious right now, that I could spit nails! If they wanted to start this medication, then why didn't they just tell the ER to give it to him instead of waiting until almost 24 hours after he was seen and almost 10 hours after I called them the first time to prescribe it! I'm hoping that we can just wait until his regular neurologist is back and then go from there.

Thanks so much for all of your prayers and good wishes, they mean so much! Keep them coming! I'm going to need all the prayers I can get to really fight for what my Little J needs! Thank goodness I have a great pediatrician in support of my choice!

Sunday, September 23, 2007

Prayers for Little J!


If your the praying type, we would appreciate it if you would say a prayer and send up some good vibes for Little J. We took him to the Children's Hospital ER this evening as we think he is showing signs of seizure activity. They evaluated him and ruled out any infections, so now we will follow up with his neurologist tomorrow. We ask for prayers that maybe this is just an off event, and if it isn't and is in fact the onset of seizures, that the doctors would be able to find the right medicine for control with no side effects or very minor ones.

Saturday, September 22, 2007

How Fitting....

You Belong in 1989

Wild, over the top, and just a little bit cheesy. You're colorful at night - and successful during the day.

Friday, September 21, 2007

You Need What?

So, today was the day that we start transitioning Little J to pre-school with the school district. Something that I am both looking forward to and dreading all at the same time. I'm looking forward to it, because I know it will be good for Little J. I know he's going to love being around all the other kids! I am also looking forward to a little more one on one time with Princess J. I am dreading it, because I'm going to have to trust someone else to take care of my beautiful little boy! G and I are so protective of him and always have that big super eye on him looking out for him, since he is absolutely FEARLESS! That's FEARLESS WITH A SMILE too! The things that are his biggest assests for learning and for development are also the things that are most dangerous. I know we live in a good school district, and I'm confident that they will take good care of him....but he is my baby!

Anyway, so I head down to the school district office and fill out all the paperwork. They have a form I have to fill out to prove where I live! You would think that just my drivers license with my address on it would be enough right? Nope! Not only do I have to provide that, but I also have to provide a copy of our property tax bill and a copy of our PG&E bill! I think I looked at the lady like she was a crazy loon when she asked for all of that! What if I don't want them to know just how much electricity I use? LOL! Share my property tax bill? What if I don't want them to know that either! I'm almost suprised they didn't ask for DNA samples to prove I'm not pretending he's my kid to get him into this awesome school district! It really is a good school district, but still! I also had to sign a paper that said if they find out I'm lying about where I live and I don't belong in the district, that I have to reimburse the district for any education and services provided to my child! WOW! I guess there is a lot of district jumping going on or something, but I was shocked! My bet is when my parents enrolled me in school, they only had to fill out the form and sign it. Maybe show their drivers license.

Oh well, signed all the papers and they will start their student evaluations in a couple of weeks. Off to dig out a PG&E bill and my property taxes.....woohoo!

Wednesday, September 19, 2007

A Beautiful Day!

These last couple of days has felt like I've been running a long race with no end in sight. It was kind of nice to feel fall in the air today, but we had a busy day ahead. Little did I know how awesome it would be! Little J had a therapy appointment today, and with a little rushing around I was able to get me and both kids out the door with enough time to hit the Starbucks drive-thru for a little caffeine goodness. Yummo!! We headed out to Little J's appointment and even though I missed the turn (enjoying that caffiene goodness) we made it with time to spare! I walked in and was immediately greeted by another mom who was waiting for her daughter to be done with her therapy. Mind you I was pushing Little J in a stroller and carrying Princess J in her carseat. So what a wonderful thing it was for her to jump up and help me with the door. She sat and chatted with me and enjoyed the little ones a bit, before Little J's therapist came to get him. While Little J was in his appointment and I was feeding Princess J, this woman and I sat and chatted about our families and most of all our children. What an awesome woman she is! WOW! She has two children with special needs. Her older son has autism and her daugther has spina bifida. In retrospect, had it not been for our children and just a random appointment time, I don't think she is someone I would have ever met or thought I would have anything in common with. I know I always try and keep myself focused on the positive when it comes to Little J's disability, but it's hard sometimes. This woman reminded me exactly why I need to stay positive. She was a breath of sunshine on a day that could have seemed quite ordinary and quite out of control at the same time. The even more amazing thing is that she was so happy to talk to me, because she felt like it was nice to meet someone with the same attitude as she had! Meeting me, somehow helped her too! How good of a feeling is that! How blessed is it, that God brings people into your life and connects you and you both come away feeling like the meeting and the conversation has made your day and revitalized energy you thought was waining! Yay God!

Once his appointment was over, we had to head over to the bank and pick up some fresh new check registers (oh yay! lol). Why is it, that now that I use Bill Pay for everything I go through check registers like they were water? I can't figure that out. I can't remember the last time I walked in that bank and there was no line (YAY)! Anyway, we got in and out of there and as we were leaving this woman stopped us and said that she had run out of gas and left her wallet at home. She asked if I could spare any money to help her get home. Although I stopped at the bank, I didn't take any cash out so alas I had none. As I loaded up the kids, I saw her stopping people left and right. A few gave her some change and a few like me said they had nothing to share. As I got in the car, I dug through our spare change and rounded up probably $1.50. Of course, by the time I did that, she was walking down the street. So, I decided to follow her and get the $1.50 to her. She seemed quite thankful, so I had to smile. I always wonder if someone is being honest and collecting that money or if they are scamming me. Usually, if it's a situation like the one she said she had, I try to give something. I figure if she's scamming me, that's outta her karma bank...not mine.

So, now we head home and on our front porch I find a cute little Minnie Mouse gift bag......inside it is a the cutest little dress for Princess J. There is no card or anything, so I have no idea who left it...but what a sweet suprise! Can't wait to dress Princess J up in it!!! So, if your the one who left the gift....THANKS!!!!!

Monday, September 17, 2007

A Big Thank You and Some Updates.....

First, I want to thank everyone who donated money to the Angelman Syndrome foundation using Little J's badge. While we didn't make the top 10 or even come close to getting the matching donation, the fact that so many of you took time to support Little J and our family means the world to us. We did raise $760!

We're going from one crazy week to the next here. Poor G has to commute all the way to Sacramento this week! Thankfully, it is only for 3 days. Little J has usual heavy load of appointments as well. Princess J and I will be kept busy getting him here and there!!

I had such an awesome time scrapping with my peeps on Friday! Spending time with
Suzy, Erin, Lizz, Rocio and everyone else that was there scrapping was such great fun! The gelato was the best! I actually got part of a project done too! Yay me!!!

Sunday, Princess J and I headed off to church again! Another fulfilling day! I love watching Princess J in church. The way she looks around and just takes it all in. She loves all the singing! She even adds a few of her own notes into it! Love it! So uplifting! Last week when we were in service and Pastor Doug was speaking, she started screaming....and not a pleasant scream either. This week, he started speaking and she was just giggling and making joyful noises! It was so stinkin' cute, but we made a quick exit out to the vestibule. Thankfully, the speakers were on out there so we could hear his message for the day. Our current series is The God You Can Know. Pastor Doug has such an amazing way of putting things in perspective and applying things to todays times. We are so lucky to have him! It was awesome to go to ABF (adult Bible fellowship) hour as well. So good to see so many new faces and lots of old friends we haven't connected with in awhile. Good to share God's word with one another. Good feelings! After ABF hour Pastor Doug was in our classroom. Princess J was busy telling him what was on her mind yet again as well. Luckly, he says he enjoys listening to her! :)

Princess J is almost 6 months! I cannot believe it....still (since I said that in a previous post too). I am just sitting back trying to enjoy these times with her. She's not sleeping through the night in our room anymore, but we still get a little time in the evening, where she sleeps on our bed with me before her last feeding of the night. I really love holding her and rocking her to sleep after her last feeding too. It's just so sweet! I've been missing our morning naps together, where she just lays on me and falls asleep. Lately, though, we've had a couple of these naps recently. I've been trying to savor them.

Well, we've got a big day tomorrow, so I'll sign off for now.

Thursday, September 13, 2007

Kenny Chesney-Don't Blink

Because I can't get enough of Kenny! Love this song, and if you don't have the new album yet....run and get it!!!

Wednesday, September 12, 2007

Tuesday, September 11, 2007

Counting Blessings....

Today was a very trying day. Princess J woke with a smile on her face, but that was the last one I saw until about 5 this evening. No one told me that we were out of fruit for Little J's breakfast and there was no cold water in the refrigerator. It was one of those days where you have 100 things to accomplish, but your little ones needs are taking over the day. It's all good, but it was frustrating! Anyway, once G got home, it was time to head to the store. I don't think I've ever run into so many snags trying to get in and out of the store. First, I get in line behind a lady who they are already bagging her groceries and she realizes she left her coupon in the car. So, the rest of the line has to wait while she goes to her car (in no apparent hurry) to get said coupon. Then at the Starbucks counter gentleman is confused where line is and is in the wrong place. He's been waiting, so I let him go in front of me. He orders a cup of coffee and then can't decide which kind of pastry he wants! As he's taking his sweet time picking out a pastry he knocks over everything on the counter. He's on the older side, so this other young lady and I pick up all the cookies he dropped and give the Starbucks guy the ones that he stepped on. Oy! So much for a quick trip to the store. As I was driving home, I was feeling tired and frustrated. I know all this seems trivial and in all honesty it was. Then the song Lucky Man by Montgomery Gentry came on the radio. It really made me think that instead of being frustrated, I needed to think of all the blessings in my life. Especially on this, the 6th anniversary of the September 11th attacks. It is true, I am greatly blessed!

These are in no particular order:
1. I have an amazing husband, who is an incredible father and a man that I know I will always be proud to call my husband.

2. Our newest addition Princess J! She is just an awesome little girl! I love all this baby time with her and while I'm sad to see her growing so fast, I cannot wait to see what the future has in store for her!

3. Little J! With his diagnosis of Angelman Syndrome, we were not sure if we were really prepared for this journey with him. Everyday, I look at his smiling face and no matter how hard some days are, I know God has blessed us with and trusted his care to us. He works so hard to learn new things and his progress sometimes slow and sometimes fast amazes me and makes me so proud!

4. We have a place to call home!

5. We have family who loves us, supports us when we need it, and who would do anything for our children!

6. I have an incredible group of friends! I love spending time with my peeps! I look forward to our girl time together and I am so grateful for their friendship and their support in good time and in bad!

7. I am thankful to be renewing my relationship with God and for being able to return to our church community! It feels so good to be there!

8. I am thankful that our church is seeing a need in our community for families of children with special needs. They are looking to us as parents of children with special needs and to others within our church community that have experience with children like ours to create a program to support us and to help us support each other and be able to participate fully in our church! While this won't happen overnight, just knowing that our Pastor has this on his list of things he wants to see fills my heart!

9. I am so thankful for all of the support services that Little J receives. We have been so blessed to have awesome professionals involved in his care. His therapists and doctors are honestly invested in his progress and his future. They get just as excited about his attaining goals as we do!

10. I am so thankful that we've met so many families online with other children like Little J! I am so blessed to have the opportunity to share the good and bad with them and know that they honestly understand. I am so blessed to be able to get and give advice in this amazing community of parents.

There are so many other things I am thankful for, but these are the big ones!

I hope you'll count your blessings today...big and small!

6 Years Ago Today-Where Were You When the World Stopped Turning by Alan Jackson

It just seemed fitting today. Praying for all the families who lost loved ones, that they are finding peace and comfort today. Praying for all the soldiers deployed today, those who are being deployed and for all of the families of soldiers who have lost their lives.

Sunday, September 09, 2007

Renewed, Refreshed and Grounded


That's what I love about Sundays! I am so happy, that G is off on Sundays, at least for this month. I have been feeling a little lost lately, not being able to attend church. Things are just a little too difficult trying to get both kiddos there and keep track of their needs while in service alone. Since G is off on Sundays for now, Princess J and I have returned to church! What a beautful and fulfilling day it was! It was so wonderful to catch up with those from our bible study class and see how fast their little ones are growing! It was wonderful to be able to sit and listen to our Pastor talk about God's word. It was awesome to sing His praise today! Princess J had a wonderful time! She really enjoyed the singing. She had a beautiful joyful smile during while the congregation was singing. Once the Pastor started to talk though, she decided that she wanted to talk back to him! It was so stinkin' cute, but for the sake of all the others we stepped out into the entry way. A little walking around holding her and she was fast asleep for the rest of the service. After service, our church had a guest speaker Sean McDowell. Although Princess J didn't let me sit for the entire program, his perspective on Decision Making and the Will of God made a lot of sense. Definately food for thought. It is amazing, how returning to church can really change your outlook and how your feeling about things. I can honestly say, I feel completely renewed, refreshed and grounded again.

I have a new found inspiration to complete some projects that I've been putting off. After reading this post on Cynthia's blog, I was reminded of my desire to read Your Best Life Now by Joel Osteen. I've read bits and pieces of it, but have wanted to sit down and really read and understand what he has to say. He really makes a lot of good positive points.

Better get back to reading and preparing for the busy week ahead! I really can't wait for next Sunday now!

Friday, September 07, 2007

Do you know Jo?



YOU SHOULD! This girl is super awesome! Did I just flashback to the 80's and say awesome? Yes, I did! Jo is this months featured scrapper at Picture Me Perfect. This month though Jo is also a guest Garage Girl, which is the design team at Picture Me Perfect. Before married life and before kids, Jo and I used to be regular Tuesday scrappers at the Garage! She is such a sweetie and super talented! Now that we've both gotten married and thrown kiddos into the mix, I don't get to scrap with this girl very often, but she rocks! Keep your eye on her, she's gonna be rocking some design teams and publications!




Love ya girlie! Can't wait to see what you do with the challenges! Your an awesome friend even if I don't see you often enough! LOL!!!

Wednesday, September 05, 2007

New Chair!


Labor Day had many things on our "To Do" list. Since G was off, we took advantage of that and double teamed the kiddos. Daddy stayed home with Little J and Princess J and I headed out to get some things done! First stop, Old Navy. Had to check out their weekend sale to see if there were any "must haves". Since Little J will be starting school in December, we are hitting up the sales looking for winter clothes for him. Well, what Little J doesn't know, is that somehow his little sister ended up with the few pieces of sale items at this stop. Just a couple of onsies that I couldn't resist. I'm sure you'll see a mini fashion photo shoot as winter closes in and these clothes fit her. Next stop, Target! gathering the usual toddler food, diapers, formula and some cleaning supplies. While wondering through the baby section, we found this pink Bumbo! chair. I'd been talking with G about getting one for her, because she loves to be sitting upright. She wants to be able to keep her little eyes peeled on everyone and everything. While we were in the aisle, I pulled the chair out of the box, pulled her out of her car seat and plopped her in. She immediately started smiling and giggling! Loved it! She was so happy in it, that another lady ended up buying one for her grandbaby who is about the same age. Do you think that Princess J can get a referral payment for that sale? Anyway, we couldn't wait to get home and show daddy her new little chair. Last stop, Safeway for the weekly grocery shopping. I don't know what I was thinking! The place was packed like I had never seen it before! Oh My! I thought that everyone would be out relaxing and skipping their chores for the day. According to those in line with me, they thought the same thing! LOL! Nonetheless, the chores are done, and now we can try and cruise through the rest of it.
You'll notice in the photo that Princess J is still wearing her baby mittens. She still has the reoccuring rash on her face and is a good little itcher. We've cut and filed her nails, but she still finds a way to come out looking like she was in a cat fight. Thankfully, I think we are starting to get this rash under control without any serious medications. Just a little hydrocortisone. When it flares up, the 1% ointment seems to do the trick.
I still cannot believe that she is almost 6 months old now. It really seems like I just brought her home from the hospital yesterday.....well it feels like I just brought Little J home from the hospital yesterday too.....and he is huge! Not huge in the overweight sense, but just getting to be a big boy now.
Things change daily around here now that Princess J is growing so quickly. She is finally sleeping in her own room consistently for 5 to 6 hour stretches! She still gets to sleep on her tummy with mommy while all the prime time shows are on, but I know this practice is fleeting too. Soon, she won't want that anymore either! She really wants to be on the move. This little girl is a roller! For those of you who are familiar with our downstairs area (it's huge), this girl can roll from one end to the other so fast your head would spin! I think she's trying to skip crawling though and go straight for walking. When she's laying on her tummy, she loves to plant her feet and put her tiny little bottom in the air with her legs full straightened. Tough thing is, she hasn't quite gotten her upper torso off the ground yet. I must get a picture of her doing this soon. It's so stinkin' cute, but I can tell she's frustrated, so it won't be long before she figures it out.
Time to try and get some much needed sleep!

Thursday, August 30, 2007

Who's in Charge?

It certainly isn't Charles! Sorry, I've been watching that new Scott Baio show and couldn't resist the Charles In Charge reference there. Anyway, we've come to realize, that this little adorable princess is in reality the ruler of this kingdom. This princess is not afraid to let you know when she wants something, when she's mad, when your not doing the right thing or when you are just too freakin' slow! This little princess cries jump and we ask (with a smile on our face) how high!

I had to get a photo of her letting us know she was mad. We had put her in her crib and she was contently playing for a little while, just watching the mobile and playing with her little Winne the Pooh musical nightlight. When she decided it was time to come out, this is the face I got.

Princess J is doing really well. I can't believe how fast she is growing and how quickly she's mastering new things. The thing she's really working on right now is trying to sit up and becoming mobile. This makes sense, since from the look on her face in this photo our efforts to move her where she wants to be is not quite fast enough for her!

In this photo, you can still see remanents of the rash on her cheeks. It appears that she is allergic to not only the standard formula, but also to the Soy formula. So for now, we are on this super expensive special formula. She is worth every penny though. This little heat wave we've got going on isn't helping it heal any faster, but it is much better than it was just a couple of days ago. The worst part though, is that we've had to keep little baby mittens on her to keep her from scratching. Those little nails are sharp no matter how often we cut them, and she comes out looking like she was in a cat fight! That poor beautiful baby skin!

Like I said before, I can't believe how fast she is growing, I already miss my itty bitty baby! She is just beautiful and I can't get enough of her! So, to answer the question, Princess J is in charge around her for now.....and it's fine with me!

Wednesday, August 29, 2007

Yo! Gabba Gabba Party In My Tummy

This is the video that should have been attached to the last post! Make sure you read the last post for an update on Little J's campaign.

Monday, August 27, 2007

Awareness Update and then some.........

So, it's been awhile since I updated about Little J's campaign to raise awareness for Angelman Syndrome. I didn't want to be asking all the peeps for donations everyday! Anyway, Little J's badge is way out of the top 10 now. We need your help to get him back on the board. Right now he is 31 donations out of 10th place and 79 donations out of 6th place which is where he needs to get to earn the matching donation from Hanes. If you or anyone you know would like to donate please do!!! Please!!! This program runs through September 15th. Pass on the word!!!

I do want to thank all of you who have donated and slapped Little J's badge on your blogs and MySpace pages! Your support of Little J, our family and raising awareness for Angelman Syndrome are appreciated from the bottom of our hearts.

In other news, there is this new show, called Yo! Gabba Gabba that has started on Nick Jr. The first time I saw the preview of it, I was a little scared. Little J however loves it! I think it's the cool beats, all the colors and the catchy tunes. Here is a preview of the song that is making him dance and me laugh!


Saturday, August 18, 2007

Laugh Big!


The other day, Erin posted about good friends and things that tell you that you have them. One of the things she posted was that you know your good friends when you laugh until your sides split, and that no matter what you say, there is no filter ever and it is totally okay. I've been thinking a lot about this lately, and this photo just made me crack up! When it comes to having a good time this kid has no filter. It is just out there for the world to see. How lucky is he!

I am so lucky that I have such good peeps to call my friends. I may not see them everyday, I may not talk to all of them everyday, I may not have grown up with them since childhood, but I feel like I've known them forever. I feel like even if we went a month or two months or longer, that our friendship would pick up right where it left off. Like we had just seen eachother yesterday. I am so thankful for these ladies Erin, Suzy, Lizz, Krista, Rocio, Angel, Carole, and Michelle. They are always super supportive no matter what I'm going through whether it is good or bad. There is no filter! They are not fairwhether friends who are only your friends when things are going well, or it suits them, they are your friend in good times and bad. You ladies all rock! I hope you all know that I am here for you if you ever need anything at anytime...good or bad!

Some days, you just have to go out and turn off the filter. Let your joy, happiness and even sadness just spill out. It's really the good to be your authentic self!

Thursday, August 16, 2007

A Quick Update!

Wow! I can't believe it's been a week since I've updated the ol' blog! This last week has been crazy busy though, so something had to give.

Friday the kiddos and I headed out to the scrapbook expo with Krista who is so stinkin' cute and we can't wait to meet her new little one who will arrive any day now, and Michelle. I did really well and stayed within' the $40 budget. I spent exactly $40 including entry fee! Yay!! Then we all headed over to see Suzy at Picture Me Perfect. I'd been there earlier in the week, so I kept the wallet closed there. I did take the time to feed the little ones while we were there.

Saturday, the kiddos and I just hung out and got some things done around the house and ran some errends. Sunday though, it was back to Picture Me Perfect for the SIStv SISters crop! It was so much fun! I got to hang with som many of my peeps and met a few new peeps too! You have got to check out this awesome SISter Michelle Hill! She is super sweet! She is super creative and just an awesome person! She has an etsy shop where she sells monthly scrap kits that look scrumptious! Check them out in her etsy shop Life is Good. You will not be disappointed!

Early week is very busy for us with Little J's therapy appointments. He has 2 full hours of therapy on Monday's. Thank goodnes they come to the house! On Tuesday, we take him to his physical therapy appointment. This week, was the first week that he met his new PT from California Children's Services. His original PT Jessica came to this appointment to help transition him to his new therapist Sherry. We are so sad to be losing Jessica, she has been working with him for over a year now and he has made such incredible progress. We are happy to have Sherry on Little J's team now though. I think it will be a good change in the end, but when people invest so much time and their professional help in your child, it really feels like your losing a member of the family. This last month or so has been a lot of changes in Little J's therapies. Almost everyone working with him now is new within the last month or so.

As for our campaign to raise awareness for Angelman Syndrome, Little J's badge has fallen out of the top 10. He's out of 10th place by 11 donations. In order to get the matching funds from Hanes, he needs to be in the top 6, which he is out of by 49 donations. If you feel moved to donate or help his campaign, it just takes a minimum donation of $10. The funds go directly to the Angelman Syndrome Foundation. This foundation, funds lots of research and clinical trials. Little J is getting ready to participate in the Natural History study, which will follow him and his progress and medical needs until he is 5. This will give researchers the ability to come up with ideas of how to treat medical issues and hopefully someday find a cure. He may also participate in a vitamin therapy program. While we may not see a cure in our lifetime, all the information they collect can only help and may one day provide a cure. Little J's badge is located on the side bar near the top of my blog. Just click on the "donate" button and it will take you to the Network for Good website. If you can't see the badge or it doesn't seem to be working for you, just leave me a comment and I will send you a link.

Now that I've asked for your help again, I do want to really thank everyone who has donated already. Some of you I don't even know in real life, only from message boards or just reading eachothers blogs. Some of you have a connection to Angelman Syndrome like we do and others just read Little J's story and donated. Thank you so much! My friends who have donated, you know you all mean the world to me, and that you take the time to help us raise awareness, and always offer your time and support for us and Little J just makes me so happy. I'm so glad you all are my peeps! You all know if you ever need anything, I am so there for you!

Hmmmmm....so this wasn't so quick afterall........ :)

Wednesday, August 08, 2007

There's Some Scrap Happy Fun in the Near Future!

Yay!! This weekend, I will be getting my scrap on! Friday, I'm loading up the kiddos and braving the Scrapbook Expo in Santa Clara! Obviously, since I'm taking the kiddos, I'm not taking any classes, just going to look around....okay, maybe a little shopping too! LOL!! We'll see how taking both kiddos with me goes. It seems like it's getting easier for me to cart the two little ones around together. Although, it always comes down to, that I just have to make it work, because I'm not one to sit and home all day.

Sunday, I'm going to be scrapping with my homies for most of the day and night! I am so excited about this! Tomorrow, I'm going to try and spend the day organizing my scraproom (in between kid feedings, diapers and play time) and putting some ideas together on paper to complete at the crop! So excitied to hang out with Suzy, Erin, Rocio, Lizz, Carole, Angel, and Michelle. I know it will be a good time. I've gotta take some new photos of the kids too! Oy, so much to do to get ready for all the fun!!

In Little J's endeavor to raise awareness for Angelman Syndrome, he's still on the move upwards! He is still sitting in 9th place. He's only 21 donations out of 6th place right now. Everytime I open up this blog, I am so excited to see his total going up and up and up!!! I know is infectious little smile can keep those donor numbers going up! Thanks again to everyone who has been supporting his campaign!!!

If I get those photos taken tomorrow, I'll make sure to post some! Princess J is growing and changing so fast. Everyday, it seems like she's doing something new and amazing. I can't believe she's already 4 months old...it still seems like just yesterday I was pregnant with her. I already miss how tiny she was the first week! It's so funny that is seems like I just brought her home yesterday, but it also feels like she's been here forever at the same time! I can't imagine our family without her!

Monday, August 06, 2007

A Small Step Forward....

Little J has moved into 9th place on the Top Ten Badge Board! Yay!!! To all of you who have donated thank you!!! I am so grateful for all of your support! I am so happy, that we are raising a little awareness for Angelman Syndrome and a little money for the Angelman Syndrome Foundation. In order for Little J to get the matching donation from Hanes, he needs to get to the top 6 badges. Right now, he is 24 donations away from taking over 6th place. Obviously that changes daily based on donations being made to the other charities. So keep spreading the word for Little J!!

In other news, Princess J is doing well! She had her 4 month checkup today. It seems like she's been here forever, yet only arrived yesterday....if that makes any sense! She is doing so well with her milestones! She's even accomplished a few things that are generally achieved around the 6 month mark. With everything that has gone on with Little J, I am so anxious at every doctor visit following Princess J's progress. I know she's fine, but just need that reassurance. She's on track to be a tall girl, right now her height is in the 85th percentile! Grow baby!!! Yay!! Her rash seems to be clearing up, she's been on the hypoalergenic formula for a week now and we are continuing it for another week. If all goes well, we'll be introducing her to a soy formula and then on to rice ceral! Wow! Solid food already! I just can't believe how fast she's growing and how much she changes everyday!

Hopefully I'll get to do a little scrapping in the next few days...or at least get a few new pictures of the kiddos. I'll definately be scrapping on Sunday! Can't wait to get together with my homies and just hang out for some good times!

Saturday, August 04, 2007

Slipping a Little

Little J is still in the Top 10 for his charity badge! Yay Little J!!! He has 11 donations totaling $320! Thanks again to all of you who have donated! Thanks also to all of you who have slapped Little J on your blog or your MySpace page! I think there are at least 5 other places besides this blog and my MySpace page where Little J's smile is beaming from!! Thank you! Thank you! Thank you!! We have until September 16th to keep this going! I am still hoping that we can get Little J's badge at least into the top 6 so the Angelman Syndrome Foundation can benefit from the matching donation from Hanes. I still have hopes that he can be the top badge, but we are a long way from there. I think the top badge has about 110 donations! So, keep slapping his badge up on your blogs and keep spreading the word! Afterall, that is really what this is about. Raising awareness and seeing what one Little boys smile can accomplish....with a little help from Mommy and some great supporters!If you haven't read our story, please see post from July 28th 2007!


On other fronts, Little J's sidekick Princess J is struggling with a bit of a rash. We think it's a combination of milk allergy (since her daddy and I both suffered from this when we were wee little ones) and a bit of heat rash. She's been on this really nasty smelling formula for almost a week. Her doctor warned us that the smell was awful and told us we could try the soy formula if either we or Princess couldn't handle the other stuff. Well, since the nasty smelling stuff if supposed to be the gold standard when it comes to the milk allergy, G and I are determined to put up with the smell. Especially since she doesn't seem to mind drinking it down. she goes back to the pediatrician on Monday, so we'll see how this all works out. If she clears up, then we'll try the soy formula and see if she has any reaction to that. The soy formula would be much better for our wallet.


I have been lucky enough to get a little scrapping in too! Yay me! I've been so happy with my mojo lately! Although sometimes, trying to think outside the box and come up with ideas makes my head hurt!! LOL!!! Everything I came up with this time was girlie too, so Princess J is the headliner of the scrapping this time around. To anyone who is worried that I'm neglecting to scrap Little J, don't worry I just developed several new photos of him and have a few ideas I've jotted down.....now if I can just find the time to implement them!!




Wednesday, August 01, 2007

Little J is in the Top 10!


Only a few days after making the badge for Little J, he has 8 donations for a total of $250! Thank you everyone who has donated and who has sent words of prayer, love and support. We really appreciate it. We also want to thank those of you who have slapped Little J's badge on to your blogs and Myspace pages!! Very awesome! Not only are we raising money for a great organization that really supports families of this rare neuro-genetic disorder with contacts and lots of education. They also are the primary fiancial support of research to help find medical treatment and hopefully someday a cure! We are also getting the word out about this disorder. One of the things that I hear from other parents and I've experienced myself is that many have not heard of this disorder and many in the medical community are not familiar with it. It is so frustrating to go into an ER with your child sick and the medical staff has no idea what your talking about when you tell them your child has Angelman Syndrome. Even better, is when you tell someone and they look at you like you have 10 heads! Thankfully, that has not happened for us at our local medical facilities. Currently Little J's badge is sitting in the #8 spot. In order for him to get the matching donation he needs to be in the top 6. There is a minimum donation of $10, but again, it is the quantity of donations not the total dollar amount that they are counting.

If you do not know our story or have not yet read our story, please do so below. I will continue to update Little J's progress here periodically along with that of his new sidekick Princess J!

Thank you again for all your continued support both with this campaign and for all your prayers and support.

If you would like to post Little J's badge on your blog, just let me know and I can forward the HTML codes to you!! We'd love the help! Thanks so much!

Saturday, July 28, 2007

Raising Awareness and the Hardest Day Ever!

I don't even know where to begin with this story. I think I have typed stuff in and deleted it about 100 times already. Many of you who know me well, are very aware of everything that our family has been through in the last year as to you I am an open book and feel very comfortable sharing myself, my family and our struggles with you. It is because of the love that you have all shown to me, G, especially Little J and now our Princess J. It is because of you that I feel that I can share our story here now, publicly and hopefully raise some awareness.

At Little J's 12 month check up, I posed some concern to his pediatrician that he was not yet pulling up to try and stand or walk. She was not overly concerned, but felt that we should make an appointment with a developmental pediatrican (since it takes at least 3 months to get an appointment) just to be pro-active. On April 11th 2006, we went to that appointment. Little J was evaluated by a child psycologist and the developmental pediatrician. After the extensive examination and quite a bit of questions and answers she told me that she had a gut feeling about a diagnosis for Little J. She wasn't 100% sure and wanted to have some blood work done just to be sure. This was the first time I had ever heard of Angelman Syndrome. Before we left, she told me not to go online and start looking for information as she wasn't 100% sure at this point, but wanted to start with the easiest and least difficult test. I held out as long as I could. I typed those words into the computer and what I read devistated me. I was drowning in fear and felt like our entire life, future and dreams were being ripped out from underneath us. That night, I slept on the hardwood floor of Little J's room with just a pillow and a blanket crying my eyes out. At this point we still hadn't done the bloodwork and I put it off for a couple of weeks, fearing what the answer would be, but yet wanting to do the work to prove that my Little J did not have this disorder. I finally took little J down to get the bloodwork done and on May 1st 2006, we got that phone call. Our regular pediatrician's secretary called to tell us that our doctor would like to meet with us in her office. I imediately broke down in tears, for I knew deep in my gut that Little J now officially had Angelman Syndrome. I called G at work and told him that the doctor wanted to meet with us in her office, so he was on his way to meet us there. On May 1st, through tears, our pediatrican told us that Little J had Angelman Syndrome. I had so many things racing through my head, but I think the thing that sticks with me the most, is seeing my husband cry. He had his arm around me and was trying to comfort me, but he couldn't hold back his own tears.

For the next two weeks, things were up and down for both of us. Things I loved to do, I didn't want to do. I walked around in an almost robotic daze, just going through the motions of everyday life. The only thing that wasn't robotic was seeing, being with and taking care of our beautiful little boy. We jumped right in, getting him set up with appointments that his doctor felt were necessary, such as a genetic counselor, a neurologist, as well as getting him Early Intervention services. It was such a whilrwind.

Angelman Syndrome is a rare neurologically based genetic disorder. It is believed to occur in 1 in every 15,000 to 20,000 births. It is often misdiagnosed as Autism, Cerebral Palsy or other childhood disorders. There are a few diferent causes of this disorder. The type that Little J has in simplistic terms is that there is a small portion of his 15th chromosome missing. This is the most common type of this disorder with 70% of children having it in this manner. Some challenges faced by patients with Angelman Syndrome are developmental delay, profound speech impairment, movement and balance disorder, ataxia, short attention span, hyperactivity, sleep disturbance, and siezures. Little J has many of these symptoms, but not all of them. One symptom that many of the patients with AS have is a very happy demeanor. Little J definately has this! Thank goodness!

A year later, things are so different for us now. Little J is still the same amazing boy, but making so much more progress everyday. Today, I don't feel devistated by his diagnosis, but blessed. This doesn't mean that days are not hard, or that some days I don't have a mini pity party for myself, but I know in the grand scheme of things we are very blessed and lucky to have this little boy. He is an absolute joy to be around. I have never seen this kid wake up on the wrong side of the crib. If you need a smile, a hug or a big wet kiss, he has one for you. Little J makes friends with everyone anytime we go to the grocery store...or anywhere else for that matter. We have been so blessed to have so many wonderful doctors on his team. We also have been so lucky to have wonderful therapists working with him who are so invested in him and his progress and accomplishments. They have also been such great advocates for him and our family when dealing with the different programs that he is involved in.

I will also say here, that my faith in GOD has never been stronger. When we were first diagnosed, I know that HE was there to help us through that rough patch. HE put many people in our path that had just the right thing to say, or what we needed to hear at that moment. People who we didn't know very well reached out to us and shared their own stories with us. Our church reached out to us. I feel so blessed by all of this. I miss church right now.....might have to go early tomorrow with just Princess J. It is just to difficult right now to go on a regular basis with both kiddos while G is working on Sunday. I'm thankful to know that our church is working to revamp the childcare program to include children with special needs though. This warms my heart and I can't wait till the ball gets rolling with that and I can help!

Okay, now that you have read this big long post, I should get to the part about raising awareness. Kevin Bacon has founded Six Degrees.Org. Six Degrees, in partnership with the Network for Good and Hanes, Hanes will donate up to $10,000 to the top 10 badges charities! The top 10 badges are determined by the number of unique donations, not by the amount of the donation. A unique donation means getting different people to support your cause. They will be checking all of the donation records for each charity badge at the conclusion of the campaign; duplicate email address and credit card combinations will only be counted once, because they violate the spirit of Six Degrees. So please, no intentional gaming of the system or encouraging others to do so; efforts like this will jeopardize your eligibility. Past recipient charities are not eligible.

I hate asking for things, but I hope you will find it in your heart to donate! I would love to see this raise awareness of Angelman Syndrome as well as to support the Angelman Syndrome Foundation. They support many families with information, education and connections. They are also funding a lot of research! Little J will be participating in some research programs at UC San Diego later this year. I would love to see Little J's badge be one of the top 10!!!!

You can donate directly by using the badge you see on the sidebar of my blog. Just click the button that says "DONATE" All donations are handled and directed by the Network for Good.

Edited to add: Someone from another site sent me a question asking if Princess J was affected by this disorder as well. She is not. She was tested during my pregnancy and is negative for this disorder. The type that Little J has is generally not hereditary so there is not an increased risk of reoccurence. Our risk of having a child with AS was the same as every one else, about 1% risk.

Tuesday, July 24, 2007

Sunday, July 22, 2007

That's Funny!


Princess J is growing so fast!!! I can't believe how big she's getting and how her personality is emerging more and more every day! Lately, she loves to have very long conversations. They are so fun, listening to her "talk" to us in her baby babble! She loves to chat and when you chat back with her, she throws in those cute little smiles and lots of laughing! So stinkin' cute.....even at 2 in the morning!!! Friday, Little J had an appointment at Children's Hospital for a check up. Princess J had awakened at midnight for some food. She went back to sleep rather quickly and let me tell you I was so happy, as there would be no sleeping in for me if we were gonna get to that appointment on time! Well, Princess J decides that 2 am would be a good time to wake up and have a conversation and tell me a few stories. That little girl cried until I picked her up, and when I did, she was all smiles and ready for a chat. She did her incessant babble for an entire hour! She finally had enough at 3 am!!! Needless to say, I didn't run and grab the camera at 3 am, but I did manage to get her in action having a go at Daddy!!! I was so stinkin' tired, but I couldn't help enjoying the chat we had!

Wednesday, July 18, 2007

Harry Potter Palooozaaaaa!

So, the time has come for the final Harry Potter book to be released. In case you've been living under a rock or have been away in the forrest somewhere for while, the new book is called Harry Potter and the Deathly Hallows. Last week, I decided that it would probably be easier for me if I had the new Harry Potter delivered to my doorstep instead of heading out to brave the crowds on Saturday. I headed over to my favorite booksellers website....Barnes and Noble and decided to not only buy Harry Potter (making sure I would recieve it on its release date) but to browse through new books. On this website, the allow you to make a wish list of 25 books. Of course mine is full. I've also been checking out Good Reads. I've been spending a little time each day entering the books I've read and the ones that are on my "to read" list. That list is currently 18 books long and growing...rapidly.

This brings me back to Mr. Harry Potter. Why did I find it necessary to make sure I got my copy of Harry Potter by July 21st the day of its release? I still have to read #5 and #6! So obviously I won't be cracking it open on Saturday when it arrives. I know it's because I got caught up in the Harry Potter Palooozaaaaaaaa! It is going to be so difficult to navigate myself away from the spoilers and to keep myself from accidentaly finding out how the book ends or things that happen. When I say accidentaly, I am sincere about that. When it comes to books, I don't want to know any of the details. I want to read it and be engrossed in it. I want to be clinging to every word to find out what's going to happen next! The longer it takes me to get to the book, the harder this task will be. So, I have resolved that as soon as I finish the book I am currently reading, I am going to read through the 3 Harry Potter books.

The moral of this blog post is PLEASE! Do not spoil Harry Potter....or any other book for that matter for me!

And, since I have this love for buying books and making my "to read" list longer and longer....if you've got a book you love...name it so I can add it to my list!!!

Monday, July 16, 2007

Napping!!!

Why is it when we're kids we did everything possible to avoid taking the dreaded nap. If we only knew then what we know now. Today, I had a really busy day. Got up early, got dinner started in the crock pot and Little J had 3 appointments back to back this morning. Thankfully, all the appointments were here at home! After all was said and done, I was exhausted afterwards. G got home and had a bite to eat, and then I headed off to have a nap! A glorious nap!!! It was so wonderful!!! I love naps!!! Oh to be a kid again and be required to take a nap everyday again!!!

Thursday, July 12, 2007

Priceless.......

1 County
1 Big Company
1 Locked Door
500 Workers
2 Weeks worth of garbage sitting on your curb
2 Weeks worth of dirty diapers created by 2 kids sitting on your curb
200 Replacement Workers
Seeing the Garbage Truck (along with Garbage Truck Security) on your street........








PRICELESS!

Never thought I'd be so happy to see the garbage man....much less taking photos of his arrival!!

Sunday, July 08, 2007

Lucky 7-7-07 was Scrapalicious!!!


So, while everyone was planning their lucky 07-07-2007 to have babies born that day, buy lotto tickets, and get married. It never even dawned on me that there was any odd significance to this day until about 3 days before. Without even thinking about the actual date, I was convinced to spend my Saturday scrapping by Erin and Janice. Still not realizing the date when I signed myself up 2 weeks ago. Little did I know that it would be the best way to spend my day!! After a rough start to the day...Little J had an appointment in the morning and trying to get my stuff together, it turned out to be so productive and relaxing for me! I used quite a bit from my stash and I was so happy with the end product!!! Lucky Me!!! I should have known that it would be a lucky day when my new kit club products arrived too!!! So, are you ready for the next lucky day of this century? If you were to write dates out in the European fashion, you would find that today would be 09-07-2007. So the next lucky day of this century will be....
20-07-2007!!! Apparently just as many people in Europe are getting married, trying to have babies and such on this other lucky day of this year!!! So, I'm making plans to scrap again!! LOL!!! Actually, I don't know what I'm planning, but I'm going to try and put a little thought into the plans of this other lucky day of the year. Maybe I'll buy a lotto ticket? Gotta find something fun to do with the family!



Back to scrapping for a minute....See the heart on the top layout (inside the flower), the little embellishment that says "cutie" on the second layout and the stars on the bottom layout? Can you tell how sparkly they are? I have become addicted to this stuff called Stickles by Ranger. OMG!! It is so easy to use and it can make anything look like bling!!! I've used it on the rubber pieces you see here. In a previous post I posted a layout called Beautiful You and I used the stickles on the flower. Lvoe how it made the flower look all glittery!!! Okay, so that's my product plug for the day.

Almost time to feed Princess J and watch some Big Brother After Dark on Showtime.

Have a great day!!!