Oxygen Tanks…
Ventilators…
Pulse Ox…
Changing trachs…
Feedings by tubes…
Cleaning mickey buttons.
Reviving…
Bagging airways…
Nurses, come…Nurses go.
All night shifts of watching cribs, watching medical equipment.
Facing the frailties of life, every day…
This is my grandchildren’s parent’s world. Yes, two babies. Every day. Crazy bad gene…

Evalee with teething toy. Usually she is playing with medical equipment, her first real “toys.”

The world of special needs parents is a very different world of other parents. Milestones are made up of the little things others may tend to take for granted.
Such as:
Breathing…milestone 
Moving legs…milestone
Swallowing…milestone
Lifting head up at 7 months old… milestone.
Tasting milk for the first time at 9 months…milestone.
Saying first words. Especially when others said it couldn’t be done with a trach. Squeaky, but recognizable.
Figuring out how to become mobile…by scooting using hands because your legs just can’t work yet. …major milestone.
Standing in a stander and learning how to stand…milestone
Teaching her how to take a deep breath…major milestone.

Miss Evalee in her stander strengthening her legs.

Most days are filled with scary moments. Machines going off and the commotion of going to one crib to the other, sometimes in medical emergency is an every day occurrence. There are no free moments. No quiet. Without constant daily prayer, it could not be tolerable.

Milestones