ChloeWatts.com

Tuesday, July 20, 2010

Tuesdays are usually our full days. Today was no exception, with a cold thrown in for good measure. Chloe’s nights have been restless the last few, due to the cold. She has been awake suctioning much more than normal. Then, of course, that means Dana has been awake more than usual. Like she needed to be fried any more than she is.

All that aside, the decision to go to speech therapy was given two thumbs up by Chlo-girl. She knows she gets taste testing during the session and she doesn’t like missing a meal.

We had hoped to be there with the new cuffless trach today but that was not to be. When will people slow down enough or get rid of enough egos to listen. Aaarrrgggg.. Dana makes two or more calls every time she has to order something. They sent the wrong trach so it’s being overnighted and will be changed after the Wednesday DR appointment. This will be our first “at home” change but I’m sure there will be no problems. Dana and I are confident in our procedures.

Before our therapy appointments I had to slip in a visit to the worst insurance agent office I’ve ever had, Mark Gregory’s Farmer’s Insurance Company. Talk about someone not listening. His front office girl, Kim, was ridiculous. I don’t ever remember having to tell someone to “shut up” during a business call before. Anyway… that’s my black mark remark for the day. Not exactly a recommendation for his office. I’ve changed agents.

So, off to the hospital for the appointments. We arrived there right on time, in-spite-of leaving the house 10 minutes late. Steve and Sierra were there with goodies in hand. Chloe was pale as a ghost when we showed up but regained her color soon after. For someone who doesn’t know what’s going on at these appointments they might think this is stupid. Chloe sits there and stuffs her face while we sit around joking. However, Steve is constantly watching and making suggestions as we are there. Everything is leading to her being able to swallow again.

One big thing to come out of the meeting today was that we will probably be able to get the oxygenator DCed. That will mean more freedom for Chloe. She isn’t needing the oxygen now and it is keeping her from spending the night anyplace but her own home, without hauling all the excess equipment out of the house, resetting it in the other house, and rearranging the night nurse schedules. It will now mean that only the night nurses will need to be rescheduled in order for her to spend a night or two at her dad’s house. It will also mean that the nights might have to be changed in-order to get a nurse there as Dana usually takes the nights normal to Chloe’s visits. It will mean the first time staying away from home or hospital in almost nine months!

After speech we saw Beth for OT. Former goals were achieved and marked off the sheet. New goals were presented and skills worked on in typing and coordination. Chloe really likes Tuesdays for Steve and Beth. When she has fun she works harder. That was the problem she had with some of her nurses. They weren’t letting her have fun.

When I asked Chloe if she wanted to go to the zoo this summer she said “sure.” That about blew me away, as she isn’t too open to going anyplace public. So we will be checking out the Wednesday concert schedule and see what will work for us. Maybe even next Wednesday. I’ll keep you posted in case any of you would like to join in the party.

Thank you for getting me back on the blog. It’s sometimes hard to find material when things are going well. However, remember, “going well” is a relative term. Chloe is progressing nicely but it’s been a very long road with miles of asphalt ahead of us.

Be well,
Ron