Saturday, January 23, 2010

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!

Friday, January 15, 2010

Gabriella Icons for your website

Please feel free to grab the icon below by using the URL shown and add a Gabriella Icon to your webpage to spread the word for prayer!

www.GabriellasHeart.com




Thursday, January 14, 2010

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.


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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.


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



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Wednesday, January 13, 2010

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


Tuesday, January 12, 2010

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

Monday, January 11, 2010

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.

Sunday, January 3, 2010

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 Poster 1.pdf

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

Gabriella Poster 1.pdf

Friday, January 1, 2010

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

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