I really did not want to let him write for us because every single one of you have helped us out so much before. Whether you prayed for us, donated your hard earned money or supported us with your love, we are forever grateful. In just one full day, you all have helped lift such a huge burden off of our backs. Dealing with Kayleigh's situation is one of the hardest thing any parent should have to go through, so thank you to every single one of you for helping take our minds off of our financial stressors so we can focus on Kayleigh who needs all of our positive thoughts. We are SO VERY THANKFUL!!!
Please understand that we would love to share with everyone how much was donated, but several people made a very good point, mentioning an amount can cause possible security issues and we would rather protect our family from any possible criminal activity. Unfortunately, this has already happened in the past. That is also why we are going to post a PO Box soon for those of you who asked for our address. Worrying about
Kayleigh looked so beautiful today, but doesn't she everyday? More of her swelling from the surgery has gone down and she seems to be in a more comfortable state than she has lately. There are very few cries of pain or discomfort and her rapid breathing has ceased for the most part. She was awake today while we held her and even though her eyes are distant, they weren't being pulled in direction that seemed noticeable. She looks straight forward, which made us feel almost as if she was looking at us. To clear some confusion up, she has no cerebral cortex brain functions, but still has brain stem functions. This allows her to breath, heart to beat, to move without purpose, and unfortunately cry/feel pain. She doesn't understand anything, won't learn, talk, comprehend anything she she sees or hears, and will never have purposeful movements.
We were able to speak with the doctors and share our plans with them. We plan to care for Kayleigh in the NICU until she is able to come home, just as if she was normal and had no brain injury. There were questions of whether or not we bring her home with normal nursing care of palliative care. We plan to bring her home on normal nursing care, so we take our time to live as a family before we decide to say good-bye. God is almighty and we will continue to pray He lays His hands on her to create a miracle, so no quick and rash decisions will be made. We will listen to our Lord and decide when that time is right.
So we are happy to continue to share the journey of Kayleigh's triumphant road home like every single one of us planned for so long. Just because Kayleigh's brain is not working the right way, doesn't mean she is not looking down on us with pure joy that we are able to follow through with the plans we always dreamed of. We know she is rejoicing in this moment with us and is happily smiling from a better place. She is our precious daughter, miracle and gift from God, and we will not let anything get in the way of our dreams and wishes.
Thank you all from the bottom of our hearts for the love and support you have given us. Please pray Kayleigh continues to progress with her feedings and everything else, so she can come home sooner than later. That day is still going to be one of the most glorious days of our lives because we still remember everyone telling us she will never make it that far.
We can't wait to hold her here in peace and quiet. We can't wait to see the sunlight dance across her face. We can't wait to see the wind blow in her
God Bless you all and God Bless our sweet little Kayleigh,