It's Been a Weird Week

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Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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Lights, Camera, ACTION!

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Yesterday was a big day for Faith - there were a little bit of lights, a few cameras, and a lot of ACTION!

At the beginning of the day about four people met with Faith so that she could FINALLY get the right part installed on her chair. These parts enable her to use the same buttons that she uses to drive her chair to work with her computer. Technology is wonderful but it can require lots of patience!

Faith working on her computer with help from Ms. Hall

That afternoon, the KFYR TV crew came in to record Faith doing some of her daily activities at school. They recorded her doing some work on her computer with her buttons and also driving her power chair.

I haven't seen her drive her chair for a long time and I was very impressed by how well she's driving! She is even able to drive herself into the elevator and turn around because she doesn't like her back to the door. The cameraman got in there with her, and I think he was a little nervous she was going to run him over!

The reporter asked Faith a few questions about GABR and then interviewed Faith's physical therapist at school and also her special education teacher. All three of them did a great job!

Faith being interviewed by KFYR reporter, Julie McDonald

After all that, you would think Faith could have taken a break, but she had to go to the gym to practice with all of the first graders for their upcoming program. I was able to look in on her and see her singing along to the songs!

Seeing her doing all of these activities today reminds me of how far she has come since her first days at preschool. I am so proud of her! I know she will continue to work hard and with the help of others she will be able to overcome her obstacles and meet all of her goals. What more could a parent ask for?

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It's Been a Weird Week

-
Image
Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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Guest Post: Who Needs Sympathy?

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Guest Post by Stephen Gallup Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families. It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me. I don’t want sympathy! First of all, from the point of view of a new author hoping to promote his book, sympathy...
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