Well, since you have been interested enough in Kailey to make it this far into the page ...
I will tell you about Kailey’s fight for life.
The best and the worst were experienced in five years by our family, a bliss and horror that only those who have lost a beloved child can understand.
Kailey was born with bilateral hypo plastic kidneys, requiring dialysis from her forth day of life until she was eighteen months.
Her kidneys gained enough function to sustain her for about a year and the peritoneal dialysis catheter was removed.
We were free to travel at will and for the first time Kailey was able to climb in bed with Mom and Dad, where footie pajamas and not be tied to a strict schedule.
It was a wonderful time in our lives.
Dialysis was needed again and we started the home dialysis as before.
Kailey was two years old and did well with all her medicines and treatments.
She was placed on the donor list for a new kidney; as there is A, AB, and B in the mix of blood between Kailey, Her Dad and I.
Strange as it is it ended up that neither Her Dad or I would be able to give Kailey a kidney.
Our call from the hospital came three days after Kailey’s third birthday - they had a match.
Kaileys transplant went okay - not great and it ended up that the kidney was not doing as well as expected, but it was doing the job.
When Kailey was almost two years out from transplant and doing well, she came down with a fever that would not go away.
As it turned out Kailey had come down with the feared PTLD post transplant lympho prolific disease.
It is a risk that comes with the immunosuppressants necessary to stop the body from rejecting the donor kidney.
PTLD acts like a very aggressive type of leukemia.
To me it was as if a ravenous beast were tearing around my sweet baby’s body and all I could do was watch in horror as it consumed her.
In one month Kailey left us to be in the presence of God. I am having the hardest time dealing with all that has happened; she went through so much in her life.
I just felt it only “fair” that she continue to do well and have a long and happy life.
We all know life is not fair.
I feel as if I am mentally marking the calendar of life - one more day down - one day closer to Kailey.
I long for the day my whole family will be together. Here is my favorite verse: II Corinth: 4 16- 18:
Though our outer nature is wasting away, our inner nature is being renewed everyday. For this slight momentary affliction is preparing us an eternal weight of glory beyond all comparison, because we look not to the things that are seen but to the things that are unseen; for the things that are seen are transient, but the things that are unseen are eternal.
Kailey was such a blast to be around! A bright happy sprite who made us laugh everyday with her antics. She has such a cool spirit, my heart misses her heart. There is a Kailey shaped whole in my heart that will never be filled till we are together again. Thank you for caring about Kailey.
Life is so precious.
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