ChloeWatts.com

Friday, Jan 8th, 2010 PM

The day was better than average with the major problem being Chloe needed a lot of suction throughout the day. This is either because she has a cold or that she is working more and it is bringing more mucus to the surface. In any case it’s very important for anyone visiting to remember that her immune system is fragile and even a small cold or runny nose, or cough or sneeze, is not a good thing for her. She is also growing a staff infection in the mucus so they are assessing whether to use antibiotics yet or not.

Her OT/PT went very well today. She was standing, with two assistants, and did a little beach ball work. That wears her out fast but it’s probably one of the best things for her. And having her workout in the afternoon was probably the key ingredient. She just isn’t a morning person, even in the hospital. And, a noted plus was that her heart rate went to 93 at one point today. It’s back up to 124 now but that’s better than the 150s it’s been at in the past week.

Chloe was asked to swish some sprite today. She really liked that but panicked when she swallowed a little. She was assured that she was fine but they just didn’t want her swallowing a lot yet. Also in the mix was the request for some things to help wake up her in-the-mouth sensory nerves. So, Sandy ran right out and got her some supplies, like lemon sticks, and assorted stimulants requested. She sure takes care of the immediate things well.

Colin was able to have dinner with Dana tonight, compliments of Sandy running out and buying something for them. When I spoke with Dana a little while ago, all four of them were in the room together. Colin was trying his best to pretend to be asleep in the chair though…

Chloe is emailing on her laptop tonight but her eyes have been pretty jumpy. That means she has to close one eye in order to see the keys. We may invest in some stick-on letters that are much brighter than the ones on her laptop. They are sort of a gray on black whereas she needs something like a black on white. We’ll figure something out for her.

All in all this was higher on the good scale than the bad one. The staff likes it when we have good days… we keep our fangs in. There are other parents who spend a lot of time with their kids at the hospital. We are probably on the more aggressive side of protection than most, but we’ve been through it before and just know that things don’t always go smoothly. Thus we like to remind those who sometimes forget something. It’s all about protecting Chloe so I hope the staff all understand.

Be well,
Ron