Saturday, January 25, 2014

WE ARE HOME!!!!!

GOD IS GOOD!!!!!!!



Just like that - heart surgery last week in Boston - home this week in NY with her FAMILY!!!!!!

We are Forever Grateful to all of YOU!!!  The support we received was so CRAZY INCREDIBLE!!!! 

I knew the day I saw this beautiful girl on RR three years ago that she was Beyond Special but I didn't realize so many people would KNOW it too!!!!  THANK YOU!!!!!!!  Thank you for Loving her!!!!!!

Thursday, January 23, 2014

Headed Home!!!!

Can you believe we are heading home tomorrow? Or that Lyla was discharged today!!?? Last week, this very day she had open heart surgery!!!!! I can't believe it. If she didn't have a chest scar and a suture where the chest tube was, I would be sure we were just visiting Boston Children's Hospital!!!!

I am an emotional mess. I wasn't sure if I would leave that hospital with my beautiful, incredible daughter!!! How was I ever deemed worthy enough to not only know her but to be her Mom??? I don't know, but I absolutely know how very lucky and beyond blessed I am!!!!!

I am hands down so very Lucky to Love Lyla!!! When I named our blog 3 1/2 years ago, I had no idea how powerfully true those words would one day be!!!!

Thank you for praying for Lyla and for loving her!!!!!! This journey was possible because of You!!! We will always be grateful!!!!!

Thank God for Our Little Miracle!!!!!















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Wednesday, January 22, 2014

Please Pray

Lyla is having an echo right now. She has been doing so well but her X-ray and O2 sats tell another story :(

Please pray that her sweet heart and lungs and operating properly and she will not require intervention!!! Thank you so much!!!!

Everyone knows Lyla on the cardiac floor. She is so proud to share her sassy ways with anyone and everyone. She walks or rides in the red push car all day!!! Just smiling and spreading her beautiful joy!!!!! I just love her fiercely!!!!!















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Saturday, January 18, 2014

Do you believe in God?

You really should!!!!!

Lyla is walking 44 hours after open heart surgery!!!!

I can't even tell you how crazy grateful we are!!!!!!!




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Warrior princess

Lyla convinced her medical team that she was not going to settle down until they removed everything!!!!! They tried all kinds of meds first with no success of calming her down. So they took Everything out!!!!! She then rolled over to lay on her belly and has been sleeping peacefully for a good couple hours!!!! Can you believe this girl????? How Blessed we are to love her and how incredibly proud we are to parent the most beautiful miracle ever!!!!!!!

We can never thank you enough for your support!!!!!! We can't even figure out how all of this amazingness stuff could even happen!!!!! Please know we will never forget how blessed we are to have this princess warrior and her faithful troops fighting for her!!!



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Thursday, January 16, 2014

Lyla is doing fabulous!!!!

Thank you for the prayers and positive thoughts. Lyla is doing amazing!!!!!

So blessed to be the Mom to this beautiful warrior princess!!!!!


Glory to God for this Miracle!!!!

If you would like to send a card to Lyla the address is

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
8 south bed space 4

I'm going to make a "lucky to love Lyla" wall!!!!!!



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Lyla is doing great

3 reports from the OR that Lyla is doing great!!!! Thank God!!!!

So many people are praying!!!! I am so grateful!!!!! I don't even know what to say!!!!!

I am so scared and just praying like crazy that Beautiful Lyla will be healed!!!!!

Thank you for everything!!!!!

I am the luckiest, most Blessed Mom in the world to have that precious beautiful girl in my life!!!


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Wednesday, January 15, 2014

Surgery tomorrow.

Lyla did so well with two days of testing!!! She is such a beautiful Miracle!!!!

She will head to the OR around 7:30. I should see her again around 1!!! Thank God!!!

Please keep storming Heaven!!!! It is absolutely working!!!!!! Thank you so much!!!!!!







She owned the airport!!!





Good vibe snugs from uncle Mike!!!!





We were blessed that Steph and Peter picked us up at the airport!!!





Lyla was spoiled rotten by these two amazing orphan advocates!!!





8 hours of testing and consults Tuesday. She was a champ!!!!






She is pretty confident she owns the hospital too!!!





Prior to her cath, chest CT and echo!!!!



After sleepy juice!!! Loved snugging her!!!!



After the cath and visiting with Aunt Ann!!!! Thank you Aunt Ann, you made today so much easier!!!

Lyla did so great!!! Pretty sure because she is so loved by so many!!!!





Happy happy girl!!!!!!! I love her so much it really does hurt!!! I would do anything to take her place tomorrow!!!! I'm getting more nervous as we get closer to morning!!!!!

Thank you for praying and thank you for loving her!!!! Tomorrow she will be in His hands!!!!!
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Monday, January 13, 2014

Mean people have good points too

A very mean person who likes to rip people to shreds posted a hate post about me on TWO sites. This is not the first time. Normally I just laugh it off!! You never want to feed the trolls but this time I was crazy mad!!!! Well she didn't have any of her facts straight and to do this knowing Lyla was having surgery in a couple days made me insane!!! I mean how sick is that????!!! So I confronted her on the site she seems to enjoy bashing people on. I pointed out some things I wanted to, some truths. But as I thought about one of the things she said, I realized she was right!!! I think she is a bully to bash me four days before Lyla's surgery but she did make a valid point. Ugh!!! It was wrong that we kept the fundraising page open. We made our goal!!! Surpassed our goal by a TON!!!!! I should of closed it!!! Thanks to her, I did a few minutes ago!!!

So I learned something valuable today. Even thru ugly hate, the message could very much be true!!!

We are so grateful to you all for being so crazy generous!!! We are beyond Blessed to have such amazing friends!!! We thank you Forever for the support you are always willing to give us!!!!

Please continue to lift Lyla up in Prayer!!!! That is all we have left to do!!!! PRAY PRAY PRAY!!!! Thank you so very much!!!!


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Sunday, January 12, 2014

Packing!!!!

Leaving tomorrow for Boston
January 14th - testing
January 15th - CT of lungs and Cardiac Cath.
January 16th - THE BIG DAY
 
No matter what the team of the BEST CARDIAC DOCTORS in the world decide we have to have PEACE
 

I can't think of anything else we need
 
(pretty neat that the tags on those cases are from when we brought that INCREDIBLE little girl home from Ukraine, now they will continue the journey for a fixed heart & lungs)

Saturday, January 11, 2014

A-M-A-Z-I-N-G

I need to share!!!  Scream to everyone!!!!  That we have the most compassionate, generous, amazing, incredible group of beautiful friends!!! 

My sister had told me about a website called Go Fund Me!!!!  It's a way for people in a financial need to reach out to friends and family for donations.  She has been bugging me for weeks to set up an account.  I didn't want to do it!  I was ashamed and embarrassed.  The truth is we are in a financial mess right now.  It's a tough time for everyone, I know :(   Dave has carried our financial burden for some time now it seems.  He let me in on it a couple weeks ago.  I really had no idea.  A little idea maybe, but I guess I was in denial.  Dave is such a hard worker and an amazing father.  When Lyla and I leave for Boston Monday he will be the soul caregiver for the kids, still work and take care of the house.  This could be for 4 or 5 weeks.  All of that with the stress of finances, well I was afraid he might just have a heart attack or something.  He would never complain EVER!!  Not for a second!!!  He would keep trucking along like he always does with a smile on his face.  He really is an Incredible one of a kind MAN!!! 

The thought of the stress on him was making me NUTS!!  I applied for a grant for families with children  who require medical care out of state.  Sadly, this very generous organization is out of funds.  Even though they have no funds they found a way to round up 4 $25 gift cards to Walmart for Dave while we are in Boston.  SO AWESOME!!!!  We are so GRATEFUL!!!  Huge Help!!!!

Well, I was still so worried about Dave.  It was too much for anyone to handle never mind my tough as nails husband.  So I decided that I would set up a page on the Go Fund Me website.  I set it up and asked my sister to proofread.  She is the grammar/spelling queen that you probably all know I am definitely not.  Well she not only proofread it but she shared it on her Facebook page.  And we received 2 donations.  I couldn't believe it!!!  I didn't want to put it on my facebook page.  So many people have been so supportive in so many ways, how could I put that out there????  I really thought the website would be great if some super wealthy person was just looking for someone to donate to.  That worked for me!!!  My sister said "how can you not share it when my friends are sharing it for you and donating?".  She was so right!!!  How could I accept that but not be willing to share it myself???  So I struggled with the words to post.  Asking for help is painful.  So, the only thing that made sense was to just tell the truth.  I did!!!  I told the truth, admitting I was embarrassed but we were in a financial mess and help would be absolutely amazing.  I wanted to block the people that always help and always give so they didn't and couldn't help us again.  But I couldn't figure out how to do that.  So I just posted it!!!  I sat at the computer second guessing posting it!  Over and over again.  I don't want anyone to ever believe we think we are entitled to anything.  I promise, we know we are not!!!  We Love our Children and we would do anything for them, sadly that includes putting ourselves in very uncomfortable situations. 

God must of felt my pain because with in an hour of posting we met the goal we had set for $3,000!!!!   Can you even believe that?????  WHAT???????????  I sat at the computer with my face in my hands just crying!!!  I had been so scared that people would think we .......well, what ever bad things I could think of that people might think.  And then we raise $3,000 in 1 hour!!!!!!  One donor donated $2,950!!!!  This person donated anonymously.  I know who they are and I hope one day they allow me to share the most incredible story that only GOD could write!!!  Their connection to our family and to Lyla is so significant!!! 

So we met our GOAL and people continued to donate!!!  $1,000 donated over our goal!!!!  I still can't even think straight really!!!  How in the world??????  We are so BLESSED in so many ways and the Blessings just keep rolling in. 

We have decided to keep the page up even though we made our goal and we are so out of our minds grateful.  In case we run in to a situation in Boston that is out of our control we thought it be best to just keep it open.  I don't know.  Maybe that is a red flag of GREED but we just think it's a good idea.  Then if that super wealthy person I talked about earlier wants to donate well then He or She can.  We have talked and talked about what to do with the money that might come in that is over what our need is.  We can't figure out what to do.  So we will keep the name of donors and ask them.  We will honor what ever they decide.

I hope this makes sense.  I hope that you don't think less of us. 

Please Pray for Lyla these next couple days!  Her testing starts in Boston on the 14th.  We will know the 15th if she will be having her surgery on the 16th.  She is so tough!!!  She has come so far with your prayers, so please keep them coming!!! 

We are so Forever Grateful to all of you!!!! 

Give thanks to the Lord, for he is good;
    his love endures forever.

He is there, every time we really do NEED HIM!!!!