I thought I might share what a typical day in the life for Lillian is. (Note, this ditl changes dramatically if she is sick...)
Her feeding pump goes off some time between 4 and 6 am. If I wake up right away, the chances are it doesn't disturb her.
She wakes up between 7 and 8 crying for me because she's afraid. She is strapped to her feeding bag which is plugged in so she can't get to me. (note, when we move we will be in a home with our bedrooms on the main floor! woohoo)
She gets an albuterol nebulized, pulmicort, nebulized, and IV antibitotic nebulized.
Come down stairs, potty again in prep for the vest machine. To which she's terrified if I'm not sitting right beside her. So 20 minutes later....that event is over.
She plays for a bit while I prep her formula and new feeding bag. By 11 she's hooked up to the feeding bag for 40 minutes (i've gotten her down from an hour just recently) She get's tube feedings at 11, 3, and 7, then on a night drip for the entire night.
She mostly spends the day playing with her kitchen, a little bit with the mini ipad and some educcation sprinkled through out the day. I attempt trying to get her to eat at each meal. We try to build in therapy type activites throughout the day as well.
If the weather is nice, we spend a little time outside where she is likely to be found in her playhouse daddy built for her.
By 5pm we are back to the vest for 20 minutes.
By 9 she's headed back up to bed for breathing treatment and sleep comes eventually.
Due to her medical fragility and immunity disorder she can't spend time around other kids. She can't attend school or be in groups with other kids because she ALWAYS gets sick when we do it. We stay away from playgrounds due to her low tone and small stature. She's not able to keep herself from getting knocked around or off of play ground equipment. Our home is Lillian's refuge and this is what a day in her life looks like.