Kaylee has a very rare undiagnosed muscle disease and will require lots of equipment to bring her home. She is currently living in The Children's Center in Bethany. She is on a ventilator and has a feeding tube and a tracheotomy. The doctors have given us very little hope with her quality of life. They have told us she is very unlikely to ever get off the ventilator. They have also told us that the ventilator will ultimately be what causes her to pass. They say that it will eventually give her lung disease from being on it long term. BUT....We have complete faith that GOD WILL HEAL HER COMPLETELY! He has already paid the price on the cross for our sins and this is not how he intended Kaylee's life to be bounded by tubes and equipment.
While we wait for our miracle we are going to be needing some things to make her life a little easier. She uses some very expensive machines to help keep her lungs clear of secretions. I was told one of them alone cost as much as a car. When we bring her home we will be needing to have a storm shelter for her since it will not be easy to pack all her equipment to get to safety. We will also be needing a generator since we can not afforded to be with out power for short period of time. Her back up battery on her ventilator will only last for a few hours. While she is still in the hospital at this time I have had to quit my job so that I can help with her care. I have not worked since before she was born on January 6th. I have to drive 60 miles one way to see her. The gas expense is starting to drain our account since we still have all our previous bills from when we had two incomes. Now we have had several bills one being well over a million and the bills continue to grow. We will also have to purchase another vehicle since we can not sit in the backseat in our little car with her and Emory's car seats. Someone will have to sit in the car seat next to her to be able to suction her on the way to doctors appointments. We have been told that insurance will pay for some but they unfortunately will not help pay for a storm shelter, generator or any changes that need to be made on a vehicle to make it handicapped accessible. We can't thank you enough for you Financial support and especially your prayers! We love each and everyone of you and we pray that God will allow us to bless another family the way we have already been blessed. Again, thank you so much for your support love The Edgar's.