One Year at Home

Hope tucked in for the night

It's so hard to believe, but Hope has been home and out of the hospital for a year now. It has been a wonderful and adventure filled year that included:

* Weaning off many of her medications. When she came home from the hospital, she was on about 50% more medications than she is now. She needs half the breathing treatments that she was getting when she came home.

* Seeing fewer doctors and seeing the ones she does still need less often. Hope no longer needs to see the neurologist and she sees her kidney doctor, urologist, developmental pediatrician and ear, nose and throat doctor only twice a year.

* Getting into a real bed time routine and sleeping through the night. It was a long time in the making but Hope now sleeps through the night. Since she has a nurse with her at night she often thought it was playtime whenever she wanted. Now she has a solid bedtime routine and knows when it's time to go to sleep.

* Lowered ventilator settings. Although it's been slow progress Hope has made steady progress this summer getting her ventilator settings lower. She hasn't struggled with the lowered settings at any point and we continue to shoot for getting rid of the ventilator all together.

* Lowered oxygen. When Hope came home she was still experiencing the occassional desat episodes that scared us so many times in the hospital. She hasn't had one of these in many many months and is on only a trace amount of oxygen (and really doesn't need that).

* Growing big and strong. Hope was measured today and is 30 inches long! She's growing longer and leaner every day.

* Staying healthy. Hope only had one re-admittance to the hospital. She was able to stay cold and flu free all year!

... And one of the big accomplishments of the past year.....

* Hope can hear! Having the cochlear implant done in July and activated last week, Hope has done really well adapting to hearing.

It has been such a wonderful year. We all feel so blessed to have Hope home with us each and every day. We are looking forward to the many accomplishments of the next year!! :)