Hello all. I'l start by saying that I have found this community to be outstanding and the members to be selfless. My baby girl Emily Elizabeth was born almost 18 months ago. When she was born the doctors and nurses all commented on her "pretty blue eyes". It wasn't until later the next day that we were briefed on her condition. To make a really really long story short she was diagnosed with a disease called "Peter's Anomoly" which is a condition where the eyes did not develop properly and her corneas were cloudy and greyish blue from scar tissue. She is now 18 months and has had 8 surgeries and countless exams under anestesia (sp?)In that time she was also diagnosed with pediatric glaucoma which is also a result of improper development of the eyes. She has had two cornea transplants and 3 different pressure valves installed in her eyes. Thank god for modern medicine she can atleast see a little bit.
The reason I beg for your prayers now is that she is getting old enough to understand that her vision is failing and will now be under going another round of pressure valves in her left eye which never took to the first valves and the cornea rejected and clouded over again. She just had a new valve installed and will need a second in the same eye to increase the flow of fluid out of her eye. I just pray that her poor little eyes can handle all these surgeries and she can come out of this with even the slightest of vision. I also pray that my wife continue to cope with the stress that comes along with being a stay at home mom of 2 healthy boys and our sweet innocent Emily Elizabeth. Thanks for listening. Skippy
That's a heart tugging story. God bless her and may the good Lord help her to heal.
My niece has something similar. They are tough, kids, and I sometimes think it is more painful for the parents at that age. I am praying for her.
Skippy
I wish The best for you and yours,that sounds like one tough cookie.
Give strength and love
Kurt
To the top of the list ..
For all in the family..
Amen and prayers for God's very best purchased with Jesus blood.
Almight Father I ask in prayer for Emily health and eyes...mark
Jason,
Emily is indeed in many prayers including mine. There are many "lurkers" here that visit regularly and pray mightily...they just don't feel led to post.
According to His will, may Emily's eye's improve and surgeries become less frequent...If it be His will, let her eyes be miraculously healed that through you and your wife, she will come to know the Power of our Lord God Almighty!
In the interim, may you teach her to "see with the eyes of her heart" and to know Jesus as her personal eyes to the world.
Prayers to for your wife and you. As BH said, it's often way harder on the parents than the kids...as we feel powerless. And we are without Him.
May the Holy Spirit, Christ incarnate, cover you both with loving arms and peace that passes all understanding.
Keep the Son in your eyes!
Skippy, my heart goes out to you and your wife and kids. You all will be in my prayers bro.
Will be praying for your family. Just know that God has a reason for all things, it is hard for us to understand some times.
Prayer sent for Emily and your entire family.
Both of my friend's daughters were born with glaucoma. They too had numerous surgeries. They are both in high school now with one graduating next month. The older one is legally blind now and accepts the fact she wont be able to drive. She is an honor student, was accepted to several great colleges, can read more brail than her instructor and has won awards for GYMNASTICS!
God has a will and a plan for everyone.
Keep the faith, she is in God's hands and he will comfort your family.
Praying for Emily and your family.
prayers sent my friend, if i can do anything just hollor. it was nice to meet you at the bunny hunt. all the best for your litle girl, God bless her.
Thanks to everyone. It's funny how this thread came back to the top today. Emily is still hanging in there like the trooper that she is. She had complications with the procedure last month. There was a slight perforation in her cornea where the pressure had bulged out and her eye was deflating so the Dr. could not install a second valve to regulate the pressure better. So he cleaned out the original valve for the time being but she will still need the second valve soon. Her pressures are once again building up and she is scheduled for her second cornea transplant(6/4/09)in her left eye to correct the one that failed. Thank you all for your prayers and kind words. They mean the world to my family and I.
Prayers on the way from Georgia.
In HIS service
Dave
Hi Jason
Praying for Emily and your family
Kurt
Prayers continue for your li'l darlin!
Lord in your Mercy, hear our prayers for Emily and her parents.
Jason,
Keep the Son in your eyes!
Jason,
I know something of what you are feeling. My son was born with a heart defect. Basically he is missing his left ventricle. He will be two in August. With more surgeries in the future!
It is amazing what they can do these days. If you just go back to 1987, we would have been told there was nothing they could do and our son would have dies within a few days of birth.
Praying for Emily and your family! And remember what my daughter said," God is the bestest doctor of all!"
Chip
Prayers continue
I will keep Emily Elizabeth (what a beautiful name)and family in my prayers.
Prayers are sent I am sorry to hear about little Emily Elizabeth. Be strong
Jimmy
Prayers sent from south georgia for you, Miss Emily Elizabeth, and for you and your family Skippy.
Randy
I just wanted to check back in and let you all know that your prayers have been overwhelming and very effective. Emily is now 2 1/2 years old and has undergone 17 surgeries and continues to impress her doctors and therapists everyday. She can see very well considering she was blind at birth. I am very thankful for all the support we have received from complete strangers. and to add to all the wonderful things she impresses us with every day we are currently on vacation in Florida at Walt Disney World and will be overwhelmed with tears of joy tomorrow morning as she walks through the gates of the Magic Kingdom and "sees" all the wonders of Disney for her very first time. Thank you all. We are very grateful for your prayers. The Bott family.
Jason,
Thanks for the update. It was so good to come here and read such good, uplifting news.
Prayers for the "magic kingdom' to always live in your hearts through Jesus' and the magic he's worked in Emily's life to this point!
Thank you, Lord!
That is the best news I've heard in a while. Praise God and may He continue to bless you and your family.
Skippy, That is some great newsI hope all goes well with any upcoming surgeries. I will keep you and your family in my prayers. Disney World is a great place for children, Enjoy yourselves. Big Ed
Prayers sent.
Best wishes. No little one should have to grow strong so fast.
Prayers and more prayers
I'm, from over on the knife forum ,think we started making knives about the same time skippy,sorry to hear about your your daughter.
I will say a prayer daily for your family!!!