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!

<>< 

Prayer for Gunner

Gunner

From Gunner's Facebook page, Gunner Our Butterfly Prince...

Tonight Gunner's hand was completely de-gloved. It is so raw and bloody it looks like it did when he was first born. After an hour and a half of a lot of tears, screams, stress, and pain medicine, we got his hand wrapped well enough for tonight. It was so tender to the touch, and this will affect his crawling and playing and everything. It hurts him so bad. I hate EB. PLEASE pray for a cure, and comfort and fast healing for Gunner. Thank you.

Thank you for your prayers! God is our refuge and strength!!

Psalm 41:3 NIV
The LORD sustains them on their sickbed and restores them from their bed of illness.

<><

Some Updates udated with 2nd part

Lucy:

All is fine for Lucy. :) There is a pretty amazing video that was done on Lucy's Story, part 1. You can 2 3 Kids, a Mini Van and a Mortgage Part 2 should be up shortly. Since I don't have permission to show it on my blog, you can see it on their blog.

Here is the link to part 2 found at 2 3 Kids, a Mini Van and a Mortgage. 

 

 Easton:

This facebook page was removed but just today I found another page up and running and I was

thrilled!! Easton had a trach placement and he seems to be doing really well. Please keep him in your prayers as this child has such a fight in front of him. 

           2 Corinthians 1:20 NIV

For no matter how many promises God has made, they are “Yes” in Christ. And so through him the “Amen” is spoken by us to the glory of God.

Please continue to pray and pray for these dear, sweet children. Thanks!!!
<><

Battle Weary

Proverbs 3:5-6 NIV

Trust in the Lord with all your heart

and lean not on your own understanding;

in all your ways submit to him,

and he will make your paths straight.

Easton:

This sweet boy is just not doing well at all. Here is the latest update from his aunt Sara:
Also, his xray this morning looked worse. His CO2 was high. They checked for viruses, and still are finding coronavirus. They did a sputum culture, they found some white blood cell activity, so they're waiting to see if any bacteria grow, but he has been negative for bacteria and off the antibiotics for awhile now. Danielle worries that he should stay on some sort of antibiotic while he's in the hospital and has so many tubes and things entering his body, but the doctors consider antibiotic resistance to be of more concern. 
His heart rate, blood pressure, and oxygen saturation are all acceptable right now, and they're anxious to see what his 4am chest xray will look like after all the activity today. The doctors are worried that Easton just doesn't seem to be able to withstand backing off the settings on the vent, and Danielle said they said he should have already come off of it by now. They said his lungs are damaged, and they're worried that he's not getting better. The doctors feel this will be a critical week for Easton....

If you want to read the rest please click on his name and that will take you to his facebook page. Thanks!!

Ian:

Ian had eye surgery a couple of weeks ago to correct his double vision and the results of improvement are slow. Please pray for Ian as he is struggling to heal and gain back his eye sight and many other things that are going on with him. Here is a snippet from the latest post, to read the rest just click on his name...


So the cancer is gone (we hope and pray for good!), but Ian is a different boy. He’s different physically, and he’s different emotionally.

He’s been plugging away at his physical and occupational therapies (taking a break from speech for now), and he’s made some major progress, but we all know he has so much farther to go. I know it, and he knows it.

It breaks my heart to see how much he knows it.

IT Guy and & were talking one night, and he agreed that, as totally crazy as it sounds, it would have, in some ways, been easier to handle all of this if Ian had been much more intellectually affected by the brain tumor & surgery. That may sound horrible, try not to freak out on me, but there are times when I just wish he didn’t realize how affected he has been. His realization hurts to watch. He’s frustrated, and I don’t blame him one bit. He’s angry, and I don’t blame him one bit. He’s hurting, and I don’t blame him one little bit.

It’s a tough place to be, for all of us.

But we’re taking it one day at a time (the only way anybody really can), and getting through each day by the grace of God. What else is there to do?

Ian had eye surgery 10 days ago (to attempt to correct the double vision he’s had since brain surgery that keeps him wearing the pirate patch). He was hoping for an immediate complete success. That didn’t happen. The eye doctor told him and us that it could take 2 or 3 weeks to see more improvement, as the brain continues to adjust to the correction. Initially, he saw a bit of correction, but he doesn’t think it’s changed much since. I’m trying to encourage him to be patient, to stay hopeful, and I know he’s trying, but he’s frustrated. Again.

Joanne:

This poor family is still really struggling with the changes the stroke has had not only on Joanne but the whole family. Please, if you are interested, head over to her blog and read the latest update. Thanks!! Here is a little bit from the latest post and again, to read the rest please click on her name...

...Anyhow, this was probably the first Sunday in our lives that we weren't at a service for Easter. There are many reasons that we decided not to go. Some of them were probably valid and others were not, but I know for me that I am in the midst of a Dark Night Of the Soul and that I am struggling mightily with my faith. I don't think it's hit me until recently that that's where I am. And the rest of our little family is there too. Joanne struggles, Audrey struggles and Emma, being the age that she is, struggles in her own way. We are all dealing with so many "non-Christian" emotions--anger, fear, sadness, shame...did I mention anger? We are still very much asking the question, "Why did this happen!" The price to pay has been so great!...

Please keep these three, Easton, Ian and Joanne and their families in your prayers. This is such a long, hard road they are on and they are all battle weary.


2 Corinthians 10:3-5 ESV
For though we walk in the flesh, we are not waging war according to the flesh. For the weapons of our warfare are not of the flesh but have divine power to destroy strongholds. We destroy arguments and every lofty opinion raised against the knowledge of God, and take every thought captive to obey Christ,

Praying and praying!!
<><

Update on Easton

Here is the latest update on Easton. Please keep on praying for him, it looks like he is just going to need lots and lots of prayer cover. Thanks!!

Update taken directly from Easton's Facebook page Support baby Easton Fridel.

♥ ok friends- got the OK from his parents to post an update ♥
Easton has had a fever since last night between 101-103. They have done another blood culture and nothing has grown at this point (so nothing indictating an infection) and he is getting Tylenol to keep his fever down. 
He had another bronchoscopy today which showed the positive air pressure of being intubated is allowing the bronchi in his lungs to stay open (thus allowing his CO2 to escape and keeping his level where they should be). 
We will be needing lots of prayers because he is scheduled for surgery on Monday for a tracheostomy and he will also be on a ventilator. After the surgery his mommy and daddy will go through lots of training and we will be in the hospital until that is complete and their nursing agency is able to find certified nurses for nursing care at home for Easton.
Thank you for your patience, they had lots of things to take into account and lots of decisions to make! Easton is one blessed boy to have those two looking after him and to have the support from all of you! I will keep you updated over the next several days! Thanks for your prayers ♥ ~ Cousin Amy

Hebrews 11:1 NIV
Now faith is confidence in what we hope for and assurance about what we do not see. 

Praying for you Easton!!
<><

A Moment in the Life of Easton

The cruel reality of Epidermolysis Bullosa, EB.

A moment in the life with Easton. Please take a moment and watch this short clip on how Easton is cared for. EB must be the nastiest disease around. 

Please be in prayer for Easton and his family. Pray for a cure for this disease. 

Easton has had a new development as well. Here is what was written on his Facebook page by his cousin:

Easton has atrophy in the front part of his brain... it has stopped growing and isn't developing normally...they think it most likely occurred when he was septic. He also has a bulging fontanelle but they don't believe the two are related. He will be staying another night so they can watch him and are having the neurologist look at him to see if they would like to run additional testing. They can not tell us why the front part of his brain is not growing at the same rate as the rest of his brain. They will be monitoring the growth of his head very closely. Please pray for Easton and for the doctors to find some answers. Thank you so much for your support...it means the world to our family ♥ ~ Cousin Amy

Philippians 4:6-7 NASB 

Be anxious for nothing,

but in everything by prayer and supplication with thanksgiving

let your requests be made known to God.

And the peace of God, which surpasses all comprehension,

will guard your hearts and your minds in Christ Jesus.

<><

Baby Easton: warning graphic pictures

Philippians 2:9-11 NIV

Therefore God exalted him to the highest place

    and gave him the name that is above every name,

that at the name of Jesus every knee should bow,

    in heaven and on earth and under the earth,

and every tongue acknowledge that Jesus Christ is Lord,

    to the glory of God the Father.

Easton was born August 23 2012 with the nasty disease Epidermolysis Bullosa  EB attacks the skin on the outside and inside of the body. This little boy was born with a big portion of his skin missing. :( My heart just breaks for the amount of pain this little fellow suffers every single day. The agony his mom and dad go through watching their son scream in pain and there is not much they can do for him but manage the pain the best they can.

Right now, Easton is fighting infection and there is a big chance he has a bone infection as well. Please pray for this little boy, who even in amongst all of this pain he still can manage to smile and melt the hearts of so many people all over the world.

Easton is now developing blood blisters which require cleaning and bandage change every day instead of the normal every second day. This bandage changing is very painful for Easton as these sores are like a 2 nd or 3 rd degree burn and exposure to air is excruciating.

Easton, is the worse case the doctors have seen and they are doing everything they can to help this baby and his family. Please be in prayer for them. As God has led me to pray, He has opened my eyes to many, many more children who suffer from EB. I had no idea!!

Awareness brings about research and a cure. Let's be aware and speak up for these children who are suffering so much. You can read more about EB at the DEBRA site.

Ben

I am also praying for Ben, Ian and Charlie.

Ian

Ian

Charlie

Charlie

Thank you to all of you for praying and caring. I know these Facebook pages ask for money and prayer. I believe prayer is the most important of all. If you are not able or just not led into donating money that is fine. What is needed most is prayer. Prayer for healing. Prayer for mercy. Prayer for those who are able to donate to channel their money into these organizations that will support research for a cure.

Psalm 41:1-3 NIV

Blessed are those who have regard for the weak;

    the Lord delivers them in times of trouble.

The Lord protects and preserves them—

    they are counted among the blessed in the land—

    he does not give them over to the desire of their foes.

The Lord sustains them on their sickbed

    and restores them from their bed of illness.

Blessings,
<><