Sharing a Miracle

Ava Rose

Hello everyone!
Ava's mommy here Thank you all for being so patient with me and for your continual loving care and support for my sweet Ava! Part of the reason I had not written a post in so long is because I had been extremely discouraged. One minute Ava would be doing well the next minute she would get a corneal abrasion. One minute she would have the courage to not hold on to the couch and try to walk the next second she would fall and take skin off her fingers. And bandages changes were just another stab at my heart. Anytime I would unwrap her she would just bleed and bleed. She would cry and say "momma stop!! you hurt me." All I could do was try to hold back tears while telling her that I'm so sorry and I never want to hurt her! Explaining to a 2 1/2 year old that a bandage change is good for them no matter how much it hurts is impossible. So in my despair I did the only thing I could, I cried out to God. How much more could Ava possibly take?! She never gets a break! Im tired of the emotional roller coaster. Why can't Ava just have a normal life! I have had to say no to her on so many things that a normal toddler should be experiencing. It just breaks my heart. The questions went on for quite some time. But just like I comfort Ava when she is in so much pain, God was comforting me in the midst of all my fear and confusion. I knew He had heard me. So I am excited to share this miracle! Ava's left eyelid has had an open sore on it for about a year and a half. We had seen the eye doctor numerous times and with each visit the wound was getting bigger and bigger. All they could suggest was putting a lubricating ointment on it. It never worked, so I stopped using it. I promise you that from the day I cried out to God, until now that sore has almost completely closed up! He had heard the secret cries of a broken hearted mommy, and proven Himself to be faithful. Ava started doing better, as you saw from Aunt Monkey's post. I just want to stop and say thank you for your prayers, I know this was God's hand at work!!! Ava's overall demeanor changed. She was just so happy. But sadly bandage changes were still awful. I hated that time of day!! In the beginning of October my sister had invited us to her church for a healing service. The guest speaker prayed for Ava at the end. He asked me if I believed Ava could be healed and I said Yes! The next day I did Ava's bandages and it wasn't as bad as it had been. Day two and three rolled around and she was no longer bleeding after each bandage I took off. I called Tony and told him the amazing news! And with each day that has passed her wounds have been getting smaller and smaller. Bandage changes have gone from the most dreaded part of the day to us eagerly unwrapping her bandages to see more new skin! So many areas are healing. Even the big scabbed spot under her nose is healing! If you are struggling with believing God for something, just hold on! I will keep you in prayer if you need me to, just like you all have done for us. If He can answer my prayers He can most certainly answer yours! Ava's cover page was taken last december when she had that awful virus. Quite honestly i wasn't sure she was even going to make it. I look at her today so full of life! I thank God everyday. Sadly many families have lost their loved ones to EB. Please join with me in spreading awareness! We desperately need a cure! Too many people have suffered for too long. A few months ago Ava and I went to Walmart. As we turned the corner two kids around 8 and 9 years old saw Ava and started pointing and yelling ewww, eww, look! I quickly started talking to Ava and engaging her in conversation because I knew she would know what they meant. I waited to see if their mom would do anything about it. This carried on for about two minutes until the mom just pulled them away. I cant even begin to explain how hurtful that was! Im grateful at that moment Ava didn't even notice. But please, remember to spread awareness to your children as well! Again thank you very much for all the love and support. It would be great to hear how you were able to spread EB awareness! -Rose

Patience

Persistence

Coming to the end of self

This is what EB is teaching Rose and can teach us too.

In every situation that we find ourselves in we can learn valuable lessons if we allow ourselves to bend and mold to the Teacher's way. Nobody wants to suffer. Nobody wants to see their child suffer. It seems, though, we don't learn unless we suffer and go through things we dread. God has promised in Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." The rough situations we find ourselves in are not meant to harm us but to draw us closer into Father's heart. 

I encourage you to seek God and ask Him to help you. He will, you know, because He loves you. 

Isaiah 41:10 ESV 

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Praising God for this miracle in Ava!

<>< 

Another Miracle

Remember Joy? 

You can read her miracle story here and here.

I have been following her on Facebook and she has been up and down but nothing too serious to make a report about. Actually all of those who are on the prayer page are either doing really well, or I haven't heard a word about.

Well, today Joy's mom reported yet another amazing miracle in Joy's life. I have copied and pasted it here below since there are a lot of you that either are not on Facebook or are not following her story.

Attention Ladies and Gentlemen,
When Joy suffered her severe lung damage in October, one pulmonary doctor told us we would be lucky if Joy was off of oxygen by the time she started preschool, but the goal would be for her to not need it during the day when she started Kindergarten. She has needed oxygen all the time since October. Well last night Joy and God must have had a long talk.
Joy weaned HERSELF off of oxygen in just 3 HOURS last night! She is doing amazingly well without it! i cannot begin to express how unexpected this was! We will be keeping oxygen here, just in case, but it was amazing today to walk around with her without any cords!
We are so grateful and humbled to be blessed by another miracle working in our Joy. We are so very unworthy! The only way we know to honor what HE has done is to shout it out!
GOD IS GOOD! HE WORKS MIRACLES EVEN TODAY! HE IS WORTHY OF PRAISE! HE STILL LISTENS, STILL LOVES, STILL CARES FOR HIS CHILDREN!
WE ARE BLESSED!

This mom and dad have given Joy and her health completely over to God and have asked for His will to be done in her life AND just look at what He is doing!!! I am so thrilled!

Please join me in praising and worshiping Jesus Christ, healer of all!

Psalm 148 NIV

Praise the Lord.

Praise the Lord from the heavens;

praise him in the heights above.

Praise him, all his angels;

praise him, all his heavenly hosts.

Praise him, sun and moon;

praise him, all you shining stars.

Praise him, you highest heavens

and you waters above the skies.

Let them praise the name of the Lord,

for at his command they were created,

and he established them for ever and ever—

he issued a decree that will never pass away.

Praise the Lord from the earth,

you great sea creatures and all ocean depths,

lightning and hail, snow and clouds,

stormy winds that do his bidding,

you mountains and all hills,

fruit trees and all cedars,

wild animals and all cattle,

small creatures and flying birds,

kings of the earth and all nations,

you princes and all rulers on earth,

young men and women,

old men and children.

Let them praise the name of the Lord,

for his name alone is exalted;

his splendor is above the earth and the heavens.

And he has raised up for his people a horn,

the praise of all his faithful servants,

of Israel, the people close to his heart.

Praise the Lord.

Blessings,
<><

Baby Joy updated

Updated: Last night as David and I sat by Joy's bed, struggling with the idea of letting our daughter go, GOD HAD BIGGER PLANS! He gave Joy's doctor a dream explaining what was wrong with her heart. Today, instead of struggling to say goodbye, we received news that Joy has an issue that CAN BE CORRECTED! She will be having her second heart surgery in the morning, and every minute is a gift, but HOW AWESOME IS OUR GOD? He is hearing our prayers! We Are Blessed!!!

Baby Joy was born on October 2 2012 with a serious heart condition. I just found her Facebook page, Joy's Journal, yesterday and the call for prayer was urgent as the doctors were preparing to remove her from life support this morning. Here is a miracle report from her page:


Joy’s miracle story: Emphasis are mine

...Miracle #1. When Joy was born the hospital in GA performed a heart cath. They took pictures for more than 3 hours. They told us she had no pulmonary arteries, at all. What those doctors did not tell us was that she would be considered lucky to last a year and surgery would have likely not worked. Instead they sent us home and told us to follow up with a cardiologist. When we had our emergency almost two weeks ago, I told the ER cardiologist here at Children’s what her cath had showed. He frowned and then recommended a CT/angiogram test to see what showed up. THEY FOUND PULMONARY ARTERIES! They recommended a surgery to put in a shunt (which would need to be replaced as she grew) to connect the arteries to her heart and a patch to make the blood flow a little better through them. Due to her oxygen levels they went ahead with surgery this past Thursday. While coming off bypass did not go as planned we did get notice of a real surprise to everyone….HER PULMONARY ARTERIES WERE ALREADY CONNECTED TO HER HEART!! There is no need for a shunt which means a LOT fewer heart surgeries!! Now the doctors have said that while is not unheard of these structures being missed in a cath, her CT very clearly shows a space between the arteries and the heart. I claim MIRACLE! God grew those vessels in response to prayer and he placed it into her heart! 
Miracle #2. While Joy’s surgery went better than expected, coming off bypass proved very difficult for her. She had two heart attacks when they tried to remove the bypass machine. Due to the trauma of the heart attacks and the extended bypass, her lungs collapsed. The doctors worked for two days before being able to get them even a little inflated. When they finally did, the doctors explained her lungs were so sick that she would be on a special ventilator (an oscillator) for at least a week before moving back to the regular vent. Well, ladies and gentlemen, she moved back to a regular vent last night! It only took her 24 hours to recover! God climbed down in her lungs and healed her!
God is working right here in Room 420. He is working in the lives of the staff and in our hearts as well. We are so very blessed to have each and every one of you as part of our lives. Our Joy is PROOF that God is listening AND acting. Joy is still seriously critical and all of this could change in an instant, but we KNOW that God is working and using our daughter for such an incredible testimony. We are thankful and We are blessed!

As of last night Joy has been critical and the doctors were planning on taking her off of life support this morning BUT they noticed something...

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!! They are NOT taking her off today! They think it may be a valve issue! We are going to heart cath to see! This is very risky, and we could still lose her at any minute, BUT GOD IS HERE!!! Please keep praying, we need miracle number 3!

Please join with me in prayer for Joy, for miracle number 3 and a completely healthy, restored baby girl. God is good! Press in with me. :)

Mark 11:22-24 NIV
“Have faith in God,” Jesus answered. “Truly I tell you, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in their heart but believes that what they say will happen, it will be done for them. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

We believe Lord God, we believe! Praying and praising!
<><

Lucy Update! :)

Lucy update!! Below is taken directly from Lucy's blog 2 3 Kids, a Mini Van and a Mortgage. 


Please read this thoroughly and take no more from it than what I am telling you.


Over the last few days we received conflicting opinions about Lucy’s recent medical events.  It has taken a long time for us to process this new information and we still aren’t quite sure what to think about it.  We have spent many hours consulting doctors, trying to make some really big decisions.  In a nutshell, there may possibly be some conflicting results about Lucy’s cancer reoccurrence.  I want to stress POSSIBLY.  I want to be very clear.  Lucy had a positive test from her CSF.  It’s hard to deny that fact. However, while we haven’t been able to rule it out we haven’t confirmed it either.  What has come into question is that there is a chance those cells were distorted by high doses of antibiotics, the infection, or the very high fever that Lucy ran for 2 days. 


Please understand that we are being very cautious with this information.  We can’t allow ourselves to get carried away, because there is a positive test out there that will hang over our heads for a while.  The doctors will retest in 6 weeks and then retest again 6 weeks later. 



Folks, it looks to me like God is healing Lucy! Please continue to press in with me for a miracle of no cancer! Pray and pray and don't stop reminding God of His promises for healing. If you haven't yet, please stop by and leave Kate, Lucy's mom, an encouraging comment or a Bible verse. This, prayer warriors, is a miracle! Thank you JESUS!


Psalm 103:1-5 NIV

Praise the Lord, O my soul; 

    all my inmost being, praise his holy name. 

Praise the Lord, O my soul,

    and forget not all his benefits—

who forgives all your sins 

    and heals all your diseases,

who redeems your life from the pit

    and crowns you with love and compassion, 

who satisfies your desires with good things

    so that your youth is renewed like the eagle’s.

Praying and praying,

<><

If Only...

Hebrews 11:1-2 NIV

Google Image

Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for.

If only I could see a sign, or a miracle then I'd believe in God, I'd get my life straight and follow Him. Are you one who does this? This is a deadly thought, just look at the plagues in Egypt. How did the Egyptians and Pharaoh react? Their hearts only became harder. And what about the miracles Jesus performed? The people's hearts only became harder still. Miracles do not make a person believe in God they only reveal the condition of one's heart. Either the heart is hard or there is a trace of faith found.

Are you waiting for a sign or a miracle to strengthen or give you faith? Well, one thing I do know and that is the burst of confidence that is found in the witnessing of a miracle will fade away just as quickly as the event appears. When tomorrow comes and there is no miracle to witness doubt will seep in once again.

The evidence of God's existence is everywhere you look, what you need to decide is if you are willing to be open minded enough to see Him and change your mind and believe. Just look at the Hubble and what it found when it was pointed towards a black spot in space.

Hebrews 11:3 NIV
By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.
Psalm 19:1-6 NIV

The heavens declare the glory of God; 

   the skies proclaim the work of his hands. 

Day after day they pour forth speech; 

   night after night they reveal knowledge. 

They have no speech, they use no words; 

   no sound is heard from them. 

Yet their voice goes out into all the earth, 

   their words to the ends of the world. 

In the heavens God has pitched a tent for the sun. 

 It is like a bridegroom coming out of his chamber, 

   like a champion rejoicing to run his course. 

It rises at one end of the heavens 

   and makes its circuit to the other; 

   nothing is deprived of its warmth.

If you have a little more than 4 minutes please watch the video below on the Hubble and stand in awe of God and His Creation. 

Endless heavens! God is Great! from illianfamily on GodTube.

Blessings,

<><