Lessons learned from Miya

Miya........she lived to short of a time, but what a great teacher she was.  Things I learned from Miya:

Even when in pain, you can find a reason to smile.

Love and once you love someone never let go.

Just cause someone says no, doesn't mean you can't try.

Telling people I love you more...has lots of payback.

Joy is in the journey not the hardship.

Never give up trying to get what you want.

The small things in life, like bubbles and stuffed ducks are important.  Enjoy them.

Shoes are not important, it is better to be barefoot.

Love knows no boundaries.  You can love lots of people in a short time and endear them all to your heart.

The more you love, the more friends you have.

Love has no limitations, even if your body does.

Friends are treasures and gifts, hold them close and camp out in their heart.

There is not enough time in the day to take time for a nap. Too many things to do, see, say and explore. Live life to its fullest.

So many lessons I learned from sweet Miya girl.  These barely touch the surface.  She greatly impacted my life and I will forever treasure the things I learned from sweet Miya.  She had some rough days, but she kept trying. 

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.