An angel got her wings..in loving memory of Miya Harris

This morning at 3:45 am, Miya, the little girl I used to babysit earned her wings.   She had received her liver transplant 2-3 weeks ago and has been fighting ever since.  This morning quietly and peacefully, her heart stopped beating and they could not bring her back.  She said goodbye to this world and hello to Jesus. 

Miya was a beautiful precious child.  She loved singing and dancing.  She loved to say "I love you more". 

On this side of heaven we can not understand why she had to suffer so and why the liver transplant took place only for her to go home to heaven.

Alagille's syndrome caused her liver to fail but it did not hamper her sweet spirit.  She touched the lives of everyone she met.  We are forever left with a Miya shaped imprint on our hearts.  We loved you Miya.  We will miss you, but we will see you again.  Dance for Jesus my sweet girl, dance pain free, dance and sing with all your might cause now my sweet girl you are free.  Miss Thelma loves you.

Keeping Miya Today

She has been rather fussy and miserable with the itching. One of the many things that she has to face due to her Alagille's Syndrome. She is up to 18 lbs now....2lbs away from the transplant list. Although I do see some some negative changes since I first started keeping her. To my untrained eyes..her abdomen seems more distended and her jaundice in her eyes is much more pronounced. She also itches more than she did when I first started keeping her. She scratches so hard sometimes she makes herself bleed. I have to keep long pants (lightweight cotton since its summer) to keep her from clawing herself. She also has bumps under her skin.....in many more places than a few months ago.....I dont know if it is scarring from her scratching or part of the syndrome. Her mommy is expecting another baby girl. I don't know the chances of the syndrome being present in the new baby or even if it can be detected on ultrasound...I would gather it isn't detected until after a child is born.

Miya goes to a special daycare for kids with medical, developmental and other special needs. They were closed today due to the holiday.

Some positive improvements with Miya:

1. She will now allow some foods and a small amount of liquid in her mouth...she proved it to me today..but not enough to even begin to sustain her and keep her liver functioning at the current rate.

2. She has gained weight and some height.

3. She is walking on her own now.

so progress is progress. She is so precious and we love her. My kids love the days we have Miya. They tend to spoil her.

Meet Miya....a sweet little angel

This is Baby Miya. Miya has Alagille Syndrome a genetic disorder she was born with. She needs a liver transplant but does not yet weigh enough. She is 18 months old and 15 lbs. Her liver issues cause her to grow slowly and abosorb nutrients differently. She is fed by a tube implanted in her tummy. She is a sweet, happy go luck little girl. Although she does not like the word NO. She is an absolute delight. This darling baby needs a tranplant and/or a miracle. God is in control.

Pray with me for baby Miya.