Because We Love Her

Sept 23, 2010

September 23rd, 2010 Posted in Daily News Post

Today the machine to help Chloe breath at night is supposed to arrive. I hope so as Dana needs the rest. She stays awake every night on pins and needles. When she does drift off, the night nurse has to move and, being right over Dana’s bedroom, she wakes her. Something has to break in her favor soon!!!

On the brighter side, Chloe is loving school. She adores her aid that walks the halls with her and she is making new friends all the time. Her principle even introduced her to a class as his new favorite student. We were pretty concerned, to say the least, about her starting middle school and getting picked on. It’s been just the opposite experience, which is terrific.

Dana and I were able to attend her parent night at middle school last night. They even had a bar-B-Q picnic for everyone before the classes started. It was good to be able to be there and see just what she has to go through during the day. They have it worked out pretty well and everyone is very supportive.

Colin has taken on more at school this years also. Dana represented us at his parents night, as I was in New York with my youngest daughter and granddaughter. It turns out that all his teachers really like him and see that he is trying. One small step for…. ha.

We are getting close to getting the trach out. We will do another swallow test after we see that she is handling the oxygen machine overnight and her stats stay where they need to be. This device that she will need to sleep with is a sealed nose mask, held on by a velcro head strap arrangement and attached to a tube the size of a garden hose that goes to the pressure oxygen. When she goes into deep sleep the machine will breath for her if she doesn’t. It is constantly giving bursts of air to her but will increase as needed. The problem with not breathing…. other than the obvious… is that you can kill off brain cells with too little oxygen and too much CO2. We all know she has plenty of brain cells but we’d rather keep what she has completely intact.

We are on a reduced schedule for rehab now. With school, homework, tasting and all, it’s just too much to go two or three days a week. And, we have discovered that the math class is the one that will take the hit every time she needs to go to Doernbecher. We are trying to figure that part out but, for now, that’s the way it is.

Be well,
Ron

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