So many updates, so little time.

Oh, the updates.... oh, the issues we've had! Please feel free to vote for me in the 'worst blog updater ever' awards!

Gabriella had her 5 year well child visit on the 18th. Thankfully, it was a seamless appointment! Though the vision test was hard due to her communication issues, the best part of the appointment was the fact that she gained 5.5lbs in 2 months!!!!!!!!!!!!!!!!!!!!! Praise God!!! She rang in at 41.5lbs and 45" tall! Loma Linda should be thrilled with this progress when we go back to see them!

Her last cardiology appointment went well. Her ECHO looks similar to previous check-ups, which is always a good sign. Because everything seems to be creeping along at a snails pace with Neurology, her cardiologist put a 24hr holter monitor on her to see how her rhythms were over the course of a day as a preventative measure. He seems to be as irritated as I am that everything is taking so long. I'm STILL waiting to hear back results, but I am sure everything looked okay if they have not yet contacted me!

Neurology. Oh my, what do I say? We finally got a consultation last Thursday from the doctor upon return from his nearly month long vacation. My biggest frustration is he seems to forget who Gabriella is and what her situation entails every time we see him, and doesn't bother to read the chart before he speaks with us. He was, again, not in a rush to get a MRI or stop the Lovenox, so I needed to remind him her life depends on this. No transplant listing without the MRI clearance. So when he remembered her story, he wrote a stat MRI order. He also surprised me by saying he wanted her to continue her Lovenox injections until he gets the MRI results... which was a huge disappointment to us. Poor Gabriella's belly is so beat up from the ports and tapes. I called Friday morning to their scheduler, who was out for the day and the back-up had no orders for Gabriella. Thankfully, the girl covering got the orders in and pushed through, but not in time for Phoenix Children's to schedule the MRI Friday. I left messages, with no return. Finally, today they called and scheduled her MRI for February 5. I am still unappeased with having to wait nearly 2 more weeks, but I have to trust in God and His timing on all of this.

Another position of stress I have been put under was last week when Gabriella's therapy clinic called me. They told me they got word from her benefits plan that her 60 days of therapy per year did NOT start January 2010 like we were led to believe, rather it began in October when she started therapy. SO my pushing and packing of therapy into 2009 only resulted in hurting her future sessions. We have 27 therapy days left until September 2010. This means she can have therapy ONCE per week.... yes, once. Her being on 2 days a week right now is cutting it shorter than we would like... and going to one is beyond unacceptable to me. So, my boxing gloves go back on. Rarely do I remove them, but they are on now and for good. I am fighting insurance and demanding an additional 30 days for this calendar year so Gabriella can continue on her twice a week program. We have been seeking other forms of therapy and coverage, but not getting very far. And even if we do secure additional therapy, I would want that above and beyond what she is already participating in! She had such an amazing session last Thursday, and like Mrs Lisa and I agreed, it wouldn't be without this frequent therapy. Gabriella is the type that needs to be pushed to succeed, and she will not willingly accept the push from me, her mother. (haha, sounds NOTHING like me.....) I will be sure to keep my blog world updated on the steps of this insurance dispute. I will win. This is ME being pushed to succeed.....

Otherwise, there's no major updates to fill you in on. Gabriella is having severe irritation in her airways, and we are watching it closely. The fluid leakage into her lungs and decreased function due to the heart condition can potentially and will eventually cause damage to her lungs. The primary focus right now is getting this MRI, showing the Doctors what God can do to heal her brain, and getting that approval for transplant. Gabriella needs this heart, and we cannot waste any more time.

On top of praying for the typical points for Gabriella, can I ask those who have the time to pray for us? Really in light of everything going on, what I'm dealing with is normal... but prayer for what God wants of ME personally and my relationships would be great. I want to be what God intends for me to be for everyone in my life, and even those I have yet to meet. I just want God to continue to prepare me and use me best to always show His love. On top of that, and much more serious, we have some decisions to make come March/April. My mom is closing on this house and moving to a smaller apartment, and if you don't recall we moved in here with her to wait before Gabriella had her stroke. If we have not yet received the transplant call and already moved by April 30, we are not too sure what we will do. Our obvious options are to move in with someone else while we wait, go month to month on a small apartment, or Gabriella and I move to SoCal and wait there while Paul and PJ stay here. Finding the right choice and the finances to support it is our focus.....

Thanks Gabriellas Heart readers. You are all so near and dear to my heart!

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Happy 5th Birthday to Gabriella

Oh, my dear Gabriella. How you have grown.....

So tiny, so fair. January 14, 2005 you blessed our lives and the lives of so many. We had no clue when you came into the world that morning what a difficult journey you would live so young, and what an impact you would make on so many people.

From early on, you have always been so observant and so intelligent. You absorbed your surroundings, paid mind to the small details and observed to learn. You were my little doll and my best friend.

Your independence and spunk have been your well known traits! Strong minded and diva-ish, if you will. But the sweet and loving, super sensitive side you is never far from the surface.

As you grow and mature, I am overwhelmed with pride. You are becoming an even more amazing little girl. Even when you test your limits, I wouldn't change that for the world. You will succeed and shine bright because you make yourself known.

You have endured and prevailed through so many things in your 4th year of life. Things most people will never have to face. You are my hero. You are a hero to many.

Though your words are few, your life speaks volumes. Yes, you made me a mother and have blessed my life, but you have also changed me. I could never return the blessing to you that you have been to me.

I love you, my 'Princess'. My 'MommaGirl'. My 'Little'. Your 5th birthday is a blessed one, and one I will cherish forever.

Disneyland pictures

I posted on NYE about the generosity and kindness of some people who made it possible for my kids to get the ultimate Christmas gift. The post can be found here: Spirit of Santa, January 31, 2009.

Finally, I was able to get the pictures sorted through, narrowed down and uploaded for your enjoyment! And yes, 163 pictures is narrowed down. Enjoy!

Disneyland Christmas 2009

I'm Still Yours

Music can pretty much speak louder than any other avenue, in my personal opinion. Last year, through the struggles of learning to live with Gabriella's heart condition and the struggles we were preparing for... Miley Cyrus, The Climb was my song. It spoke, no... screamed at me. It was everything I needed to hear and defined Gabriella's climb.

I have a song that is now my #1 most coveted Christian song ever sang by my most favorite Christian band, and feels like is the anthem to our lives since Gabriella's stroke. The words are rediculously profound to us. If you washed away my vanity, If you took away my words... To the God who gives and takes away.... When my life is not what I expected.... Will my broken heart still sing? Seriously. How much harder can those words hit?

Please take 3 minutes to listen to this song and spend some time with God while you do it.

I'm Still Yours
by Kutless

If You washed away my vanity
If You took away my words
If all my world was swept away
Would You be enough for me?
Would my beating heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives and takes away

If You take it all
This life You've given
Still my heart will sing to You

When my life is not what I expected
The plans I made have failed
When there's nothing left to steal me away
Will You be enough for me?
Will my broken heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives
And takes away

If You take it all
This life You've given
Still my heart
Will sing to You

Even if You take it all away
You’ll never let me go
Take it all away
But I still know

That I'm Yours
I'm still Yours

Oh, I'm Yours
I'm still Yours
I'm still Yours

Gabriella is progressing!

Gabriella's words and sounds are exploding! She is getting (by small strides) more efficient in making the correct sounds for words without much prompting or queuing. These sounds will only get sharper and more understandable as she trains her mouth to make the movement more, in turn allowing her to put words together! This is why therapy is SO important, to keep her mouth working and making these sounds. The more she does it prompted, the faster it will become an automatic thing!

Drumroll please...

More
Mama
Papa (for food)
Boo
Wow
Mommy (mommy's)
Baby
Daddy
Me (daddy's)
Mine
No
Nope
Coke
Go
Caca
Piece
Cheese
Play
'this one'
'I want'

YES! That's 20 words!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She did it! It was my goal for her to have 20 words by the new year and all of those she acquired by then! How AMAZING is she?!?!?!

I have also had multiple people point out how well her arm/hand is doing. Looking at her, you can no longer tell she has a deficit in that arm. It is only prevalent when she uses it, and even then you can see nothing slows her down! She holds it with more confidence, extends her fingers beautifully and is using it!!! She is dressing herself and putting her own seatbelt on again! Her occupational therapist mentioned reevaluating her soon to see about possibly cutting back her OT therapy! That's my girl. My little fighter!

And more good news.... Gabriella is up to 41lbs! She is making HUGE strides in her weight gain and at a weight I am SURE Loma Linda will be happy about when we resume clinic visits!! Praise God, and my deepest thanks and appreciation for everyone praying for her. Your prayers are working. She is getting to a wonderful position to be listed for her heart... what is now the final stage to getting my girl healthy and in a 'normal' life.

Gabriella's Heartsong - January 15

We truly hope you can come out and join us! It is going to be a GREAT night of singing and supporting Gabriella!

Thanks so much to Kelly and the Hope worship team for putting together this awesome event!!!

Download the flyer by clicking here: DOWNLOAD Please print off some copies and bring friends!!

Facebook event page: Gabriella's Heartsong

January 15, 2009 from 6-9pm at the Stadium Club in Chandler

Gabriella's Heart Song - January 15

We truly hope you can come out and join us! It is going to be a GREAT night of singing and supporting Gabriella!

Thanks so much to Kelly and the Hope worship team for putting together this awesome event!!!

Download the flyer by clicking here: DOWNLOAD Please print off some copies and bring friends!!

Facebook event page: Gabriella's Heartsong

January 15, 2009 from 6-9pm at the Stadium Club in Chandler

Facebook Group and Cause

Please click the icon to join the Facebook Group page for Gabriella which will send out vital updates at time of transplant to everyone!

And the Facebook Cause can be joined here: CAUSE

2009 Year in Review

It began as any other year.....

January
Gabriella turned 4!
Pediatrician heard a strong murmur.
We moved into a new house!

February
Paul and I celebrated our 7 year anniversary!
MaggieMooDesigns turned 1!

March
Gabriella's journey began with an irregular and unexplainable EKG and Echo.

April
I turned 27..... (eeek)
Gabriella had her first heart cath and was diagnosed with Restrictive Cardiomyopathy with Myocardial Bridging.

May
We find out Gabriella needed a transplant.
We started our adventure, making the most of every opportunity!
We were interviewed by KTAR radio and 2 news stations.
A comedy fundraiser was held for Gabriella.
A spaghetti dinner fundraiser was held for Gabriella.
Our family grew stronger.

June
Gabriella rides a bike.
Gabriella has her first dance recital.
I leave my job.
Gabriella starts with the mitral valve leakage.
Our family takes us to Disneyland.
Gabriella attends VBS for the first time.
Anaheim Angels wear Gabriella Bands!

July
Pre-transplant testing begins.

August
Gabriella's wish is granted by Make-A-Wish.
We ran away to stay with friends in Sacramento.
We had our Loma Linda intake appointment (with a side of Disney)
Golf fundraiser for Gabriella.
A new member of the family is born.

September
PJ turns 2!!!!
We make big decisions.
Rummage sale fundraiser.
Appointment at Loma Linda.
Gabriella has her stroke.

October
We move in with my mom.
Gabriella goes home after a 3 week hospital stay.
Rehab life starts.
Halloween!!!

November
I get a complimentary spa day.
Gabriella is hospitalized with pneumonia.
Gabriella appears in the Gilbert Republic.
Kids see Santa!!
New Moon premieres!

December
Nutcracker, Zoo, Letters to Santa, Christmas parties.

This year has been insane. 2009 tried it's hardest to break our spirits and knock us down, but it failed. No one is stronger in my eyes than my amazing Gabriella, and the strength she gives the people she meets is insurmountable. We go into 2010 with new armor of faith, positivity and love... and 20-10 is shaking in it's boots at the sight of us!

Happy new year to everyone!!!!!!!!!!!

Spirit of Santa

It shouldn't be hard for the frequent reader of our little blog to know by now that we have been insanely blessed this year, amidst difficult times. It is hard to spend much time at all focusing on negativity when so many uplifting people have been involved in our lives. It is my primary goal to be sure that all the blessings and generosity we have been shown will keep going. We are eager to be in the position to bless people as we have been blessed!!!

We had some pretty incredible people step up this Christmas and help make it as memorable as humanly imaginable for our family. It is people like them that keep the spirit that is Santa Claus alive and thriving.

We had a Special Christmas for these special Santa's. On Saturday, we let the kids open all the gifts from special friends. A large box mailed to us from California for both kids, from a family who had lived the struggle of a sick child and can stand tall today in spite of the struggles they faced. Handmade jewelry boxes, fun toys and interactive activities. So much thought and love was put into it! And a wide assortment of gifts gathered from many loving souls at Paul's work for both kids to enjoy. Clothes, toys and other goodies! Each small gift or package I watched them open, even a surprise to me what was inside, was enough to fill my heart beyond capacity. It wasn't the items themselves that gave me joy, but the generosity and compassion put into the fact that each one was picked out by someone that wanted to bless (spoil) my kiddos.

Please check out our album here of the kid's Special Christmas.

Spirit of Santa 2009

Yes, Virginia, there is a Santa Claus. He exists as certainly as love and generosity
and devotion exist, and you know that they abound and give to your life its
highest beauty and joy.

We also had one very special gift we didn't include in the Special Christmas on the 26th. It was something we chose to give the kids from Santa Claus, and never have I had anything that was more from the spirit of Santa than this. An 'anonymous' person gave my kids something we typically give them every Christmas, but couldn't afford to this year. A trip to Disneyland. Not only that, but at the Disneyland Hotel even! A combination of that Santa, a sweet friend who gathered goodies from the park to help the big reveal and numerous others who blessed us with Disney gift cards or money for Christmas, I am typing this blog from the Disneyland Hotel on New Years Eve. The kids got a box from Santa on Christmas day. Inside was 2 sweatshirts, maps to both parks, official Disneyland handmade candy canes, $25 gift cards for each kid and buttons, and a letter from Santa.

The letter read:

Dearest Gabriella and Paul Jr, Christmas 2009

What a year it has been. Gabriella, you have been such a strong little girl. You have had so many scary things happen to you, but have always been so strong and such a big girl through everything. And PJ, you have been patient with your mommy and daddy when they had to take care of your Sissy. You are such a loving little boy

I got your letters you took to the mall. PJ, I love your Mickey Mouse santa Gabriella, you said you wanted to go to Disneyland for Christmas. My elves and I have worked very hard to grant your wish. That is why I am giving you everything you need to go to Disneyland for Christmas Your Mommy and Daddy will have enough money to take you in their bank, and I have packed a box here for you with a warm sweatshirt, Disneyland maps, and your very own money to spend

Gabriella and PJ, you have both been good. Please promise me to be good
for your Mommy and Daddy all the way until next Christmas when I come back to see you. Love each other and listen. And remember that Christmas is about Jesus
and how much He loves you

Snowballs and Candy Canes-

Santa

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

How can we ever thank you enough, special Santas? Thank you for keeping that glimmer in their eyes bright. We believe!

Christmas 2009

We had such an amazing Christmas this year. Everything has a new meaning to us, these days. We had fun doing so many things with each other and families. Making tamales with Paul's family, baking cookies with mine, looking at Christmas lights with my sister and brother in law, and shopping!

Here's a few pictures to share from our Christmas at home!

Gabriella Baking

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

From Christmas Time 2009

Neurology Follow-Up

We went on the 23rd to our follow-up Neurology appointment. When we met back in October with Kaplan, we expected to come in December and quit the Lovenox and schedule the MRI. This is not quite what happened....

We spoke a bit about her progress. Said that since she has retrieved over a dozen words so far, he sees no reason she won't get back a full vocabulary eventually. It might take years, but will happen. Her arm is probably close to its full potential, but we should continue to work with it and keep those muscles working and nerves firing to help them become a bit more automatic. He said she looks fantastic for being 3months post-stroke.

Dr Kaplan then went on to talk about the Lovenox. Said he didn't feel comfortable taking her off of it quite yet, because he was leaving for a 3 week vacation. He said he didn't feel comfortable if we took her off and she stroked again while he was gone. SO we are keeping her on it until mid-January. We have an appointment scheduled for his first day back in the office and will get her off the Lovenox then and schedule the MRI. This, again, delays her listing. It is looking like FEBRUARY is now a more realistic estimate.

He gave me the option of calling Cardiology and asking if they were comfortable to monitor him while he was gone, to go off Lovenox immediately. I called Cardiology and they agreed with him, that keeping on it while he is away is safest.

I have to admit, this waiting is getting ridiculous. The original delay was all the testing and scheduling being spread out. The second delay was her stroke, unavoidable. But this delay is just irritating me! I want her on this list and get her sparkly new heart so she can start the road to this new journey in life. And I want it to happen before something major happens to her heart.

(negative moment is passed)

So we will be in hopes and prayers that everything continues to be in God's timing!

Merry CHRISTmas!

Merry Christmas to all of our family, friends and blog followers we haven't had the joy of meeting yet! We are so blessed to have you all!

I hope you all have a wonderful day of family and food, and Jesus! Worship Him before you worship your gifts. Praise him before you enjoy your dinner. Keep Him the center of attention, and the guest of honor!

Luke 2:11 For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

A night for greiving and reflection....

Through a series of unfortunate events, it has been nearly a decade since I had seen my grandfather (as well as most of my extended family). Tonight, we learned 8 days later, that he passed on December 15, 2009.

Though the last 9 years have been what they were, I cherish the first 17 years I had with him. The memories can never be taken away.

Today, I was 'coincidentally' reminiscing a memory of him with my mom on the way to the doctors. And last week I came across a letter he had written to me Christmas 1993. I know I was led to find that letter this time of year, at the time that I did, now that I am aware of his passing.

"Dearest Maggie!

You know who this letter is from. The one &
only 'real' Santa.

I am so very proud of you, and you are a special
grand daughter. Just remember in your heart all the past "real" Santa times we
had together.

Always believe in Santa as you always have & the
"real" Santa will always be in your heart, every Christmas time, all through out
your life, no matter how old you & your "real" Santa get. Forever & 1
day.

I love you, My Maggie

Your Santa"

I love you, 'P'. I have peace in the image I have of a healthier, younger you standing at the foot of God.