Exciting Day! April 30

Today was a pretty exciting day! We got switched over to the home ventilator AND they came and measured for the Kid Kart AND you got to use your new swing!

When I got there this morning the nurse said you woke up at about 4:00 this morning and wouldn't go back to sleep, so they put you in your swing and you finally fell back asleep around 7:00...after all the excitement of the shift change of course! She also said that they put you in it yesterday at about 3:00 pm and that you just sat and watched everyone walking by (and stopping to talk to you) and smiled and kicked away until about 6:00 when you finally started getting sleepy eyes. But every time someone would walk by you'd perk back up in case you were going to miss something!

You're tolerating the big bows much better also :)

The goal with switching over to the home ventilator is that you wouldn't notice a difference in the support...but since they have different settings and parameters, and are not really meant for people as small as you are, it's not quite that simple. But after about 30 minutes of adjusting and testing and switching around and number crunching, we think it's finally about equivalent to what you were getting before - and it's much lower settings than they were anticipating. This is day three with NO OXYGEN and both Dr. G and the Pulminologist are thrilled with how well you're handling it. They didn't want to push too much today so you will stay on the vent only for 24 hours, then we'll go back to trach collar when you're wide awake and vent when you're asleep and see how that goes.

Watching your new toy after we made the vent switch - it moves, has lights AND sound! PERFECT!

I'm super excited about the Kid Kart!!! Here's the one that we're getting - they came and measured how long your torso is, your legs from the knee up and then from the knee down. The seat will be built to fit you now, but also to adjust for the next year or so before we might have to get a new one. These strollers are made by a wheelchair company, but designed to have the conveniences of modern strollers. It will have brackets on the back that fit with the vent we're going home with, it has a solid tray on the bottom for anything else we'll need, it will have an oxygen tank holder (just in case) and an IV pole for feeding bags. It will take a few weeks for it to come in, but they are bringing the loaner stroller early next week for us to work with mobility training and to bring home until your's comes in. Ignore the price on the page - I had a heart attack when I saw it first too, but that's something that SSI covers! BLESSING!

We spent some more time playing with your toys - you are much more interactive with them (when no one is around) and the PTs were thrilled when I showed them the video of you playing with the spinner the other day. Sophie continues to be the one you tolerate the most... when I sat her on your chest this afternoon you put both hands on top of her and looked up at me like you were saying "MINE!" Then you started trying to chew her face off until she fell down too far and you couldn't get her back to your mouth.

Play away Baby Girl!