JOLI IS OUR PINT-SIZED CELEBRITY!

Hi everyone! Joli was chosen as the feature for World Retinoblastoma Awareness Week (May 13-19)! Her story is on the Eye Care Foundation website (www.eyecarefoundation.org). This is the same foundation that published the "Joey's Eye" (aka Joli's eye) coloring book -- co-written by Grace -- to help siblings of Rb kids understand the process.

Thanks to Hayley from the Eye Care Foundation for choosing Joli for this great honor!

Jenny made an interesting comment in an email to me today: "I guess it's easy for me to "forget" what Joli went through because we were so far away! It's crazy, but I saw her in May in (Los Angeles) right before she was diagnosed and then didn't see her again until the following July when the only traces of what she went through was her port."

For some reason, blogger had deleted all the photos prior to April 2006, so many of you who check this blog never saw the pictures of Joli during treatment. I'm re-posting them, not to be depressing, but truly to 1) remind us of how far Joli has come and 2) to honor World Retinoblastoma Awarness Week in hopes of helping other children out there treat Retinoblastoma early.

This is a photo of Joli with the tumor in her right eye. She was dilated from the doctor's appointment that morning, so it's very clear to see. The gigantic white circle is the tumor. By the time we caught it, the tumor had destroyed her retina, and enucleation was our only option.
Here's Joli recovering after surgery wearing a pressure patch on her enucleated eye. Don't worry.. that red stain is from her fruit punch. After her surgery, Joli only wanted to be "held by Mama" and "drink juice with Daddy."

Quick recovery -- Joli was outside playing the very next day! Her socket "itched" and we remember her crying in her sleep, but overall, Joli's recovery was very quick!

Post-surgery, the eyelids are sewn shut to protect the socket.

Joli's first stay in the hospital for chemotherapy in September. Here she is (she looks so small!) getting ready for her first round of chemo. We would repeat this 7 times. Typically, I brought Joli to chemo on a Thursday AM, stay overnight, and then Jorge would come on Friday PM to stay overnight. We were usually discharged on Saturday afternoons.

Sometime between her first and second rounds of chemo, Joli's hair fell out. This is a picture of her at Halloween with "fuzz" remaining on her head. We wore a lot of hats over the course of 7 months!

Of course, Joli is doing really well now! I'm kind of bummed out that the pictures from the earlier blogs are gone, but I'll try to post some as they become more relevant.

-Liza

Great birthday pictures from Pops and Grammy!
We've had a super fun week and weekend! Jada's birthday was so much fun, and Pops and Grammy sent these adorable pictures -- thanks!

Joli went to her little friend Gracen's birthday party this weekend at a Kid Sized Gym - it was great! It was basically like a soft obstacle course where the kids could do all sorts of wacky things like climb an indoor rock wall and go down a mini-zip-line. Way, cool!

On Sunday, Joli, Jada, Mia, Aunt Jenny and I went to the Mystic Aquarium where we had so much to do. Seriously, for the first 20 minutes, Joli and Mia kept screaming, "Look over here! Look here! Woah -- look over here!!!" They loved it there! Even Jada got to look through a little toddler-sized fish tank. The girls all picked up starfish, pet a crab, and marveled at the sea lions. Sorry no pictures... Daddy had the camera at the comic convention where he was a mini-celebrity there!

Hope you enjoy these awesome birthday pictures!
The Vega boys and girls
"Enough with this posing, this cookie needs to be eaten!" What is this??? A family photo???? Whaattt!! All the girls .... (and Jorge)

"See ya next year, peeps!"Jada big girl!!

Oh, Little Jada! Happy Birthday!
This is Jada playing with her giraffe while Joli and Mia rip open her presents..!

"Uh, guys. I'm a little nervous about turning 1 year old! Anyone hear me? Grover? Worried??"

"Next move... Disney. Once I get this walking thing down, I'm outta here!""I DID IT!!"

Happy 1st Birthday, Jada!!
Jada had a beautiful first birthday with all her East Coast family and friends, and we could not have asked for better weather!

We rented a bouncy and all the kiddies exhausted themselves in it. Even Jada got in on the action!
Joli and Mia hosted a Dance Party while Jada was taking her 2nd nap.
Jada finally emerged from her nap and enjoyed some time on the slide!
"BYE, everyone! Thanks for coming to my party!!!"

"MY A-DIDAS!"
There happens to be a really great story about Jorge and his wish for a pair of Stan Smith Adidas sneakers. Let's just say, after NINETEEN YEARS, Jorge finally got his first pair of Stan Smith Adidas originals! Congratulations Jorge! He was making so much noise in celebration that Andy came upstairs to see what all the "racket" was about (Stan Smith... Adidas.. tennis star... "racket"...) ouch.

Joli also looks mad-stylish in her new glam Crocs. These shoes are the best - mostly because she can put them on by herself in a jiffy! Jada also got a new pair of stride rites as she's walking a little. Sorry about the YouTube feed- sometimes it works, sometimes it doesn't. But, trust us, she's starting to walk! Maybe before her 1st birthday??

NOW PLAYING: "JADA TAKES HER FIRST STEPS!"

We had a nice Easter this year! Joli and Jada got a slide for the livingroom and a little rocking pony that they love! Joli was awesome and helped to put the stamps on Jada's birthday invitations - not an easy task! The girls have the best time in the bath, although Jada is having trouble following the "do not splash water outside of the bathtub" rule. She thinks it's hilarious to throw water out of the tub, and when I correct her, she simply says, "ehh!" and laughs at me. Great. Joli is very helpful, though, as she loves to shampoo Jada's hair!
Jada's birthday is in 1 week! My goodness! She loves to crawl and even stand up unassisted. She talks and talks and talks and talks all the time and sings when you ask her to "Sing Ariel Song!" She also loves "If you're happy and you know it, clap your hands!" and can sing along with the CD. Our daily routine? Jada wakes us all up around 6:15am, demands that Barney is turned on, and then sits quietly until about 6:30am when Joli wakes up to snuggle in bed. Jada then gets her bowl of cheerios -- which she quickly unloads in our bed -- and then sings along with the TV. She's now forward facing in our car, and she seems so much happier to see all things going on as opposed to just facing the car back seat.

Jada also knows how to "blow kisses" and "hug" and says "yummm" when you give her food. She loves the remote control (and TiVo-ing programs), climbing all over Gordon, and splashing in the toilet. Yes, the toilet. Which we have quickly stopped her from doing. She also drinks milk from her sippy cup and eats lots of yummy grapes and pasta.

OHMY GOSH!! I'm watching Jada walk!!! Gotta go!!! (where's the darn camera??)

Just some stories...
No pics right now, just some stories!

The girls are cracking us up every day! Jada is having kind of a tough time sleeping at night, but oddly enough she wakes up refreshed and ready to go at around 6:30am. She sits up in bed, slaps Mommy in the face, says "Heehh, ehhh!!!" and then sits on Mommy's head. Soon after, Ate Joli comes in and wants to snuggle, but Jada would rather use Jo as a climbing wall. Thankfully, Joli is pretty even tempered and allows Jada to lunge over her all while pulling her afro.

Joli is Jada's best cheerleader! We always hear Joli saying, "Good JOB, JADA!" Joli says it when she sees Jada standing unassisted, ("Good job, Jada! Good standing!") or if Jada eats all her breakfast ("Good job, Jada! Good eating!"). But, Joli also says it when Jada is being particularly naughty .. like when Jada slaps Mommy in the face, ("Good job, Jada! Good slapping Mommy in the face!"). I guess Joli is still learning differential behavior. Great.

Let's see... what else? Joli has a new found infatuation with her bird feeder that Jorge bought and set up outside. She checks it every morning when she wakes up and stares at it for about 2-3 minutes before getting in the car. She loves that bird feeder! Joli also has a favorite pet -- no, not Gordon. No, not Jada. But, this little stuffed dog she calls "Ella." We can't go anywhere without "Ella." Oh, and "Ella's blanket" because it would be a tragedy if Ella got "cold."

Joli also loves getting her nails done. Poor Tita Mari used to do them at least 1x a week, and now Tita Elma does her nails. She loves it! Today, Joli is wearing "red" which she calls her "grown up color." Tee he hee!

Jada loves Mommy. Okay, she loves Daddy, too, but she really only cries when Mommy leaves.... she basically chases me around the house and cries until I pay attention to her. Oh, and she loves to turn off the tv. Even when we say "no, Jada. No touch!" She turns off the TV and then looks at you and says "Hehh!"

Oh, Jo!


This is a bit delayed, but here is Joli's tigger picture -- 44 months old on March 17th (yes, a little late!). She is super hilarious - someone taught her "hey, I have a secret.. come here.." *fart*. She said that Uncle Andy taught her it.. is it true?

Her hair has been the big topic of conversation as of late. It's a gigantic 'fro, but when we actually style it and put product in it, it has these beautiful big curls. Today, we stopped by the local candy store, and Joli is always so sweet (no pun intended). She has incredible manners, is very responsive, and well, isn't a "brat." Even the women at the store were commenting on how sweet and well mannered Joli is. When we left the store, Joli said, "Mama, I have good manners." Yup, she does. She's the best!

Jada is 11 months old
Can you even believe it?? 11 months old. 6 teeth (I think). Says MAMA, DADA, can drink from a sippy cup, is starting to drink regular milk, plays peek-a-boo, claps, close-open-close-opens, eats just about everything, and even bosses around Gordon.
Oh, and she keeps messing with my laptop while I try to type....
She can also "sing" the Ariel song, talks on the phone non-stop, and loves to tease her daddy! She also can pour water over her head to wash out the shampoo, naps 1-2 times a day, and knows how to turn any television on-and-off.
Jada can stand for a few seconds unassisted, crawls incredibly fast, and is awesome about listening to directions (especially "no mouth!")

Go Jada! Next major picture will be of her at 1 year old!! Woah...

I sometimes can't believe what a big girl Joli is and how verbal she is for her age. We were snuggled in bed and she told me the entire "Goldilocks and the Three Bears" story in really good, descriptive ways. I mean, it didn't sound at all like a little kid telling a story. Joli has a great talent for that!

Mari is so cool!

Check out Mari with Apl from the Black Eyed Peas! She was in the recording studio with him in Burbank, CA the other day. Jada and Joli will be thoroughly impressed, Mari! They LOVE the BEP's! (so do I). She asked Apl if she could take a picture with him after they recorded - and said that her sister Liza would "beat her up" if she didn't get one. She's right. I would have....

Seriously... Joli is amazing....

But, first, Jada had a great EUA the other day. She was a trooper and didn't cry that much with her drops. Of course, all is well with Jada.

Now for Jo...!

We just got back from Boston and Joli had her 2nd office appointment (her first one was 6 months ago and it was mildly tough). This time Joli was absolutely amazing. She had her eye drops put in and DIDN'T CRY EVEN ONCE! NOT EVEN ONCE!! She didn't even whine, wince, or anything. Unbelievable, because these drops actually do sting when the go in. So, that was the just the start of a great day! Then, she was so wonderful waiting for the doctors and played so quietly with her little puppy, Ella, and read some books. She was then brought in to see the nurse, and she sat all by herself in the exam chair and did the eye chart all by herself. We then met with one of the fellows in the office, and Joli again sat in the exam chair all by herself and allowed the fellow to flash the light in her eye and look up-down-left-right. We then waited for Dr. Mukai to come in, and Joli was again, great! She let Dr. Mukai exam her and she almost seemed like a professional sitting in that chair. Dr. Mukai then said, "Okay, Joli, we have to look behind your prosthesis." So, I said, "Oh, gosh, here we go." Dr. Mukai said, "Would you like me to take it out?" ...

okay, quick break..

so, last time Joli had to take her prosthesis out, she was screaming/crying/floundering around/etc. It was truly a scene. I had even warned some people I was sitting with in the lobby that they might hear Joli screaming when we go into the exam room...

okay, time in....

So Joli says, "No, Dr Mukai. I can do it myself." I then shook my head and whispered again to the fellow, "This could be bad...."

Well, Joli reached in and in about as much time as it takes me to take out my contact lenses (aka about 1 second), Joli's eye was out. She held it up and said, "here you go."

(**Whhhhaatt?????!!!!****)

Then, she let Dr. Mukai mess around with her eye socket and pulled on her lids. All the while, Joli was fine and attentive.

Cut to the chase --- Joli is FINE!! And, Dr. Mukai has cleared us to see him ONCE A YEAR!!! WHHHAAATT!! HURRAYYY!!!

So, it was time for Joli to put her eye back in. Dr. Mukai said, "Would you like some help putting your prosthesis in?" Joli says, "No I can do it."

So, I get up and start to head towards her and said, "I'll do it. She's never done it before and she gets a little nervous."

Dr. Mukai points to Joli and says, "Really? Because she's doing it right now."

And, sure enough, Joli had about 99.9% put her eye back in - the right way up and everything!! I simply had to just tug on her bottom lid a little and it popped right in!

Truly, I was trying to describe it to Jorge as an "out of body experience." I almost couldn't believe it was our Joli doing all this!

As we were getting ready to leave, we met a nice family in the waiting room who had just been diagnosed (stitches on the eyelids are kind of a give-a-way). I felt for them. I still do. And, all those same shock-feelings came back. I guess 18 months ago, I never would have thought we could even find our footing. And, now look at Joli.... truly amazing.

Jada -isms....
Because I'm getting in trouble for not keeping up with the Jada progress, here you go!

Food: Jada pretty much eats anything at this point. We're going to start a little more dairy into her diet as she's all mommy-milk. She eats all types of fruit, food, has had some apple juice courtesy of Jorge, and she's probably had some donuts-- courtesy of Lolo (he's in big trouble).

Fun: In her little lifetime, she's been to Arizona, New York (twice), Pennsylvania, and all over MA.

Facts: Jada loves to sing the Ariel song from Little Mermaid. She can do "close-open" and "clap", and she responds remarkably well when you tell her "Jada, no!" She's all about the rules, baby! (takes after Mommy)

Frolicking: She is a crawling machine! Jada could win the Indy 500 of baby crawling. She also likes to stand up while holding onto something, and she's getting very daring with letting go. She holds her hands up high and can stand for about 5-6 seconds, and when she falls, she screams in delight!

Function: Jada loves her Fisher Price Laptop. I dare say she is obsessed with it. She can download email, make a tune, and do all sorts of typing. She also loves to dance, but she does the "Cabbage Patch". It's hilarious. Jada also loves to wiggle her toes when she dances.

Face: Lots of teeth. Let's see.. let me count.. 2 on the bottom and it looks like 4 on the top. Her hair is curiously straight though.

Friends: Basically, her cousins. She loves her cousin Mia and I think she really misses Gavietron.

Talking (fine, I ran out of "f's"): She babbles. Says Mama and Daddad, and Lola swears she's said "Lola" uh-huh.

Doctors: Jadie is now 18.9 pounds! Wish us luck as she has an EUA tomorrow....

We had so much fun in NYC this week! I was there on business, but Jorge, Joli, Jada and Grace came along, too, to hang out. The girls rode on their very first subway (even though Joli is, technically, a native New Yorker!) and Joli even rode in her first cab ride! It was absolutely freezing in NY, but both girls were just the best! Jorge took the girls (along with Pops) to the Museum of Natural History and Joli "was losing her mind" as Jorge says when she saw the giant whale and the dinosaurs. The girls ate in Times Square, went to the gigantic Toys R Us, American Girl Place, went to the M&M store and the Hershey Store. Jorge and Grace also very bravely brought them to an antique store!

Joli, Jada and Jorge rode this subway to visit Grammy, Pops and Ped!

Joli also got to ride the ferris wheel with Tita Grace at Toys R Us! She loved it! She also went to the American Girl store and bought her little sister her very own baby doll.
Despite the freezing cold weather, we all had a great time and can't wait to go back again next year!
*See, Mari... Jada is completely bundled up. Note the 2 jackets and fluffy hat.... now, stop freaking out!

We miss Gavin and Mari!
It's amazing how quiet it is at Lola's house... here's a great picture of the cousins on their last morning together! Tita Grace made matching pajamas for all of them and Uncle Lons took this great pic!

We miss you Gavie and Mari!

While we're thrilled that they get to go home to Uncle JP, we're sad that Gavin and Tita Mar have returned to CA. Congratulations on surviving the most difficult year we hope you ever have to face. You kicked cancer's butt, Mari! We love you all and can't wait to see you soon!

I had to take this picture of Joli because her hair has taken a new turn. It's weighing itself down and now developing into these great ringlets! Jo's favorite thing to do is to hug people about a dozen times before they leave. She's also totally into "waving at the window" to anyone leaving.

Here's Jada at 10 months! She now has 5 teeth, has tried to stand without leaning on anything (she falls on her bum and laughs!) and claps-claps-claps! (that's her newest trick). Jada also looooves yelling at people. Mari calls her a "little old lady" because Jada points her finger and waves it around and yells "eehh! ehhh!".

Lots of activity!

We've been really busy this past week! Jada was christened on Sunday, February 11th and we now welcome Ninong Jon and Ninang Mari as her official godparents (we figured they spend the most time with her around her -- thanks ya'll!).


Thanks to Lola, Joli and Mia went to see Disney Princesses on Ice and it was so much fun! We all sat in the 4th row and the girls went crazy when they saw Ariel and Cinderella -- or was it the 3 bags of cotton candy they ate?

This week was a big celebration week -- Mari and JP's wedding anniversary, Lola and Lola's wedding anniversary, Aunt Kirsten's birthday, and Mari/Gavie's farewell! They'll be leaving at the end of the week to go back to the warmth of Los Angeles! We'll miss them so much!!


Joli also helped to make wonton soup for the first time. She did awesome! Truly! That was the most delicious wonton soup we've ever had!


Here are the girls' 43 months and 10 months pictures! Stay warm!

MORE FROM JADA'S BAPTISM
Thanks to Aunt Marie who sent us these pics! Go,Jada! Thanks to Uncle Pedro-spectacular who braved the Chinatown bus to come and visit us for the weekend!

Jada has joined the Christened club!
Congratulations to little Jada Grace who was christened today! It was a great ceremony - thanks to everyone who came! (special thanks to Aunt Marie and Uncle Andy who took this picture!). Jada's godparents are Uncle Jon and Tita Mari! Jada was not very happy in the morning as we were getting her into her christening gown, and she remained pretty miserable throughout the ceremony. When it was her turn to be baptized, she tried to grab the pitcher of holy water from the priest and then tried to wriggle out of my hands as he poured water on her head. Then, to top if off, she was on the alter to receive her blessing, spun around and bonked her head on the alter! Oh, great. But, then everyone came back to our house for some yummy food, fun, and of course, Guitar Hero. Thanks to everyone who came and celebrated Jada's special day!

Jada is composing a new song....

This was just too cute. When we put Jada on the floor in the living room, she goes right for the piano, pulls herself up, and starts to play and sing! It's awesome! Maybe one of the next posts will be of Jada playing - (I'll check with my tech guy and see if he can hook that up!).

THIS TIME LAST YEAR....

Okay, so this time last year, we were finishing up our last day of chemotherapy with Joli. I can't believe it. I can't believe that she's been a year post-treatment. I'll post some pics this weekend, but it's amazing to think that "far" back. It seems like just yesterday, yet so much has changed -- Jada is here, Joli's hair is outrageously afro-licious, Mari got diagnosed/started/finished treatment, Gavie wasn't even crawling and is now standing up and peeing on his cousins (more on that later).

Jada's baptism is on Sunday, and while we don't want to eclipse Jada's special day, we'll have a little cake for Jo, too, to celebrate her 1 year post treatment! Hurrah!

Yes, yes... pictures will be forthcoming!

Girls Day Out!

While the men stayed home and played with the kiddies, the ladies finally went out for the first time to celebrate Jenny's upcoming wedding and Mari's upcoming return home to LA!

We had so much fun at Foxwoods (Jenny and Kirsten's first time there). Unfortunately, "what happens at Foxwoods stays at Foxwoods" so I can't post anything .. other than we had an awesome time!

I hear that Joli and Jada were such good girls with Jorge!