Moriah...Walking!!!

Over Moriah's school break, we took her to our local track, and had her practice walking with her walker! Despite having a fever, she did a great job, and we are so proud of her!

Luckily, Nano and Maji were here so that Moriah could show off her new skills

I love that face

When she finally got tired, we put her back in her wheelchair, and then I went running around the track with her. I didn't get very far. Her wheelchair is a beast, and I was huffing and puffing by the end of the lap. I don't know how Justin runs with her. 

Anyone heard of a wheelchair jogger that would be able to hold all her equipment? 

Last year, we had started taking her with us to the track and saw she liked it. 

However, Moriah and Co. are a bit much to run with. 

You know what...scratch that question. 

I know she will be walking soon, and then running faster than us =)

We are so proud of you and all your hard work, Moriah!
Thank you to Nurse Sharon and Moriah's teachers and therapists at preschool for working with her to reach this goal.
It is beyond amazing to see...

Bay Area Photographer: Liz de Puydt

Last September, we had the pleasure of having our family pictures taken by a beloved Bay Area Photographer, Liz de Puydt. 

We met Liz many years ago, when she took photos for Moriah at CRC for HOPE Magazine. She captured some of the sweetest moments, and we were so happy to be able to have our family photographed by her a second time...especially since we have Jadon to include in on the mix. 

I. mean, look at this photo of Moriah...isn't it simply angelic?

And this of Jadon, of his piercing blue eyes. Just beautiful.

We were not an easy bunch to photograph with Jadon and Moriah moving non-stop. 

 But, Liz, still managed to capture the essence of our family. 

<3<3<3<3

This last one is one of my favorites with Jadon trying to escape, and that silly grin on Moriah's face. 

These are my kids to a T, and Liz captured them perfectly!

Thank you, Liz, for these pictures that we will cherish forever. 

Please feel free to visit Liz's website to check out her amazing work!

www.ldpphotography.com

R is for Random

Just a few random tidbits here...

We've continued having family workout days when possible. Here is a little clip of Justin running with Moriah. I was so impressed with how many miles he ran with her, especially since her wheelchair weighs a whopping 150 lbs. Notice I was hanging out on the grass with Jadon. My workout was a lot shorter =)
The LPCH Summer Scamper is coming up. Justin should totally do it with Moriah!

We found out this happy, little girl's heart is looking awesome since weaning from Sildenafil (a medication she was put on since a few months old to help with the function of her heart). This is a big accomplishment, and we couldn't be more ecstatic with this news.

Cuteness. In her stander, borrowed from preschool.

I once again enjoyed another great visit with my parents, who helped me out while Justin was out of town for work. Since he's been traveling more lately, I've been so appreciative of my parents and our Nurses. There is no way in heck that I could handle these two crazy kids by myself!

Other happy, random tidbits...
*I'm doing a girls weekend in Vegas soon- my first vacation in over 4 years!
*Jadon will be turning 1 on July 1.
*I booked tickets for Jadon and I to go to Malaysia in December. Woohoo....Aaaaaah!!! What am I thinking going on a 20 hour plane ride with a 1 year old???? But it will be worth it to finally get to see my Maji, and for her to meet her first great Grandson. Justin and our Nurses will be holding down the fort here.
*Moriah finally loves her brother =)

That's all for now.

All Good Things Must Come to an End

At least until summer school begins =)

A few weeks ago, Moriah enjoyed her last week of preschool.

We thank you for a wonderful year Miss Sarah, Miss Liz, Miss Mickey, Miss Millie, and Miss Rosita!

And also Miss Carol for helping Moriah come such a long way since the beginning of the year. Now, M can sit independently, pull to a stand, sit on a bench, cube chair, and walk with a walker. 

Preschool has been the best thing for her yet!

And it wouldn't have been possible without her Nurses accompanying Moriah, both past and present. 

Thank you Sharon and Shannon for all that you have done to make it possible for M to attend!

Justin and I were so emotional dropping M off on her first day of preschool, incredibly proud of how far she had come.

Yet she was still rather unstable, and we weren't sure how she would do.

But now look, she is learning to ride a bike, with her brother at her side (riding her wheelchair).

Simply Amazing.

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I am so thankful for this wonderful school, and for how much it has impacted my daughter's life.

*Confession: I cry every time I step into the building because I am deeply touched by the love and dedication that you all demonstrate, and I'm especially moved by each and everyone of these sweet, precious kids. 

We thank everyone from the bottom of our hearts for working hard to make a difference in the lives of all these children. 

These Peas are NOT Sweet, Mama

I told him they were sweet peas. He didn't buy it.

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*I continued to feed him because I thought his reaction was so funny. I wasn't seriously trying to force feed peas to my child =)

TGFF and S!!!

My version of "Thank God for Fridays and Saturdays"
But I bet you all agree with me, right??

I love Fridays. They are my most favorite days of the week...especially when M doesn't have school and we get to go out and have fun. So, on Friday we decided to become mall rats since it was raining outside...I just didn't think about the fact that there would be a thousand other mall rats since it was a school holiday. Whoops. Finding ramp-accessible handicap parking on these days is tres mal. 

But it was totally made up by the other fact that we ran into M's old Nurse from the CVICU, Nicole, and her cutie patootie son, Owen! Next to loving Fridays, I also love running into wonderful, special people like Nicole =) Look at my own cutie pie drool monkey at the bottom of the picture. He is such a good baby, tagging along wherever we go. I guess he doesn't have a choice in the matter, but he makes it so easy on us being a go-with-flow kinda guy. Love you J boy.

And to top of the mall rat adventures, M got to ride her first coin-operated kiddie machine. I really wanted her to go on the carousel, but it wasn't feasible with the vent/wheelchair. Instead, we settled on...

(wait. before moving on, let's talk about how cute this picture is with Shannon and her seven-month-pregnant belly and Moriah and her piggie tails. ok good. discussion ended.)

So, we settled on the rollercoaster! 

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As if Friday wasn't enough fun, on Saturday Auntie Kaela came to visit from Colorado (can't get this to center properly)

And we all went to Gilroy Gardens Family Fun Park!!!! (better)

You bet your booty we went on the only wheelchair-accessible ride they had...the train ride! Don't get Justin started on the lack of wheelchair-accessible rides for kids. Apparently he is going to open his own theme park filled with them. I would so go, babe =)

Best seat in the house train

Here is a video of M on the train. Justin is admittedly the worst at filming, and I even felt like throwing up after watching this. Brace yourselves =)

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I beat Justin and Kaela in the water-gun racing game. Yeah! In your face, Justin. So kidding. =) I'm not that competitive. Anyway, I won a pirate duck for Moriah, and Kaela and I are displaying it while doing our old lady face. I know I explained this way back when, but when we were in college we loved the part from Wedding Singer when the little old lady puts meatballs in Adam Sandler's hands. We are doing this in about 99% of our college pictures.

And again, while wearing crazy hats

M was psyched about the waterfall. Jadon was napping this whole time. I know it looks like we are ignoring him, but we aren't. He was just sleeping soundly to the sounds of flowing water.

Stopping for another photo op in the butterfly exhibit. Everything was just so beautiful here, I couldn't stop taking pictures...or asking Kaela to take pictures of us, hoping just one would turn out okay. Those of you with small people know how this goes. You have to take a million in order to get a good one. 

Man, what a fun weekend! Now I can fall asleep and not wake up until next Friday, and then do it all over again.

Maybe these rides we've been going on this past weekend will prepare us for our 6 hour ride to LA for Thanksgiving. Ha...or not =)

What A Handful

On Friday evening, Justin and I made a trip to Trader Joe's to buy items for Care Packages for 20 families in the CVICU. For some reason, ever since M was in the NICU, this became our "thing" to do whenever we wanted to be a support to families in the hospital (several of you have been the recipient of one of our TJ bags!). We just figure that you can't go wrong with Trader Joe's since they have yummy, high-quality, healthy snacks, and a lot of time when you're in the hospital, you get stuck eating junk - or not eating at all. When we were in the hospital with M, Hannah always made sure we had yummy snacks and meals to help nourish us and keep us going - I remember how much this meant to us!

Several shopping carts later, Justin made a trip to LPCH on Saturday morning and delivered the bags on behalf of City Church San Jose (so thank you to those of you who donated because there were 20 families who appreciated the nourishment to help keep them going!)

On Sunday, Uncle Jon and Auntie Vanessa made a visit on their way to San Francisco. We are so happy for this newly-engaged couple, and can't wait for them to get married. They are so cute...and so in love =)

And last but not least, this little chunk has been crawling everywhere (well, as far as the tubes will allow)

And has been pulling herself up to a stand every second she gets

But man oh man, has she been a handful! We can't turn our backs on her for one second because she's crawling too far for her tubes, becomes disconnected from her vent, or she is standing and doesn't have the core strength to balance herself. But, I guess that is what you get with a toddler on a vent...and that is exactly why we have home nursing!

It's completely worth it when you see the smile on her face because she is so proud of herself =)

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Standing 2/9/11

At 10:30 last night, I yelled for Justin to "Come quick!!"
Out of nowhere, Moriah all of a sudden pulled herself up to a kneel in her crib! It was such a milestone and rather unexpected - we knew she was getting stronger but we didn't think she would be able to pull herself up like this! One of Moriah's weaknesses is her physical strength combined with her inability to balance (apart of CHARGE)...

But what really blew us away next was that she PULLED HERSELF TO A STAND - ALL.BY.HERSELF!!! It was one of the coolest moments, and one, to be honest, that I wasn't sure if I'd ever see.

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I've now added a new Label for the blog and it's titled "Look at Me...I'm Three!" I just know this is going to be a year full of milestones and miracles, and I can't wait to see them all =)

*Please know that we definitely lowered her mattress setting! However, we have found that it's hurting our backs to pick her up now, and pretty soon, I won't be able to reach as the basketball in my tummy grows into a beach ball. Im scurrying around to find any drop-down cribs that are safe to use -would love any suggestions (she is too rambunctious for a toddler bed, and doesn't have control over her movements for it to be safe just yet). Thanks!

Just Because

Since several of you asked for more videos, here they are! This is some footage taken over the past few months of our cute, sweet, chatty, happy girl. These are moments we hang onto when she is not feeling well and is struggling with her pain. This is what keeps us going...

Telling Stories

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Shakin' It

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I meant to add more but it's taking two hours to upload one video...that's what you get with basic internet connection, but hey, you gotta do what you gotta do to cut costs, right? =)
I'll try to add more tomorrow, but we'll see how busy the day gets.

xoxo,
Victoria

Friend or Faux?

Something went down between these two pals.

Typically, Moriah looooooves Elmo...as in she can't look at the hairy, red, thingymajig without laughing.

However, just overnight, Elmo and Moriah had a falling out. We aren't sure of the details, but all of a sudden, Elmo went from being Moriah's bestie to being Moriah's worstie.

Here is what we noticed. While reading through her books, Moriah would all of a sudden cover her eyes every. single. time. we came to the Elmo puppet book. She was fine with everything else.

Proof.

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Guess we're just going to have to wait and see how Moriah and Elmo resolve this one.

To be continued...

Lucile Packard Children's Hospital: CVICU Heroes

Song Goes with Video

In recognition of the hard work, devotion, and love that the CVICU showed to our family during the past year that we were there...

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Look At That Face

I can't believe she's giving me that "leave me alone mom" look already...

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Think Happy Thoughts

During these times when Moriah is down and out, I always look at pictures and videos of the fun, happy times that we have with her. Here are a few of the more recent ones that I've been looking at this time around. (I know the family is going to love this post)

A month ago, while fighting an infection, Moriah was still playing peek-a-boo and giving me kisses even though she wasn't feeling well. She's such a sweetheart.



Or the week leading up to Moriah's bleeding incident, everytime we would put her in her stroller, she would insist on sitting in it with the canopy pulled over her head. She is such a ham.


Peekabo with Baba

And whenever Moriah starts to get really tired, she keeps herself awake by talking more. She's already worn us out at this point and so we stuck her in her chair. This girl doesn't ever want to miss out anything!





Touching Daddy's ear, which she loves

Mommy and Moriah having a lot of great quality time as we spent almost every single day in that room on the general floor care together

One of her favorite activities!


We love you, sweet girl. We will do this all over again as soon as you start feeling better!

Highlights of the Past Week

Father's Day Breakfast at the RM House

Moriah loving her Daddy on Father's Day

And then giving him her Father's Day present...Mommy and the Nurses laughed a lot at this one.
Yes, that's poop.

Our good friend, Steve, visited us from Colorado! Steve has one of the biggest hearts out of anyone we know, and has always loved and served us selflessly. It was so good to see our friend, and catch up on life.

Jana and the team came up with a new plan for Moriah; antibiotics were stopped today, and they are starting her on Bactrum and Fluconisol (sp?) prophylactically, and will give her the next 10-14 days to see how she does on it

Preschool with Miss Kristen. Moriah made a Father's Day card with her footprints. So cute!

Exercising in the Bumbo

Reading time with Daddy. Moriah looooves reading books. Her favorite ones are by Karen Katz because she likes to flip up the flaps and find the picture behind them.

We were barely able to fit her in her CU t-shirt which is 24 months by the way. The tee kept rolling up throughout the day so that her belly would hang out. Can we say Chunky Monkey?

We went to Nicholas' 1st Birthday at the park. Ashley (mom) and Nicholas were at the RM House with us because Nicholas had a liver transplant. He was so loved at the House and we all just passed him around and loved on this sweet, cuddly little boy. Ashley and Nicholas went home today. Happy Birthday handsome!

Mommy holding her big girl, enjoying her laughing and smiling

Video
*Just pause the music at the bottom of the page*

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Physical Therapy: working really hard during tummy time

Fine Motor Exercises...she's getting better with that left arm

And Daddy learning how to do weight-bearing exercises to help Moriah stand...looks like Justin is doing most of the work...she has him wrapped around her finger ;-)

Phew! Lots went on. We are glad that Moriah got better during the week, and we are now really hopeful with this new strategy of prophylaxis medication. We will update on how it goes. Otherwise, I'm just really enjoying my girl.

As soon as I get to the hospital, I don't let go of her, and Justin usually has to fight with me in order for me to let him have his turn. The Mama Bear in me comes out if I don't get my hugs in ;-)

We just ask for continued prayer for strength, perseverance, hope, and healing.

Thank you, friends.

Love,

Victoria