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.