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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Singing Her Heart Out

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I will never forget one of Faith's first programs ever. It was during her preschool days, and she was tense and nervous the whole time, startling every time someone clapped. She really didn't look like she was having much fun. 

Then she began to gag, and I knew if I didn't do something, she would throw up all over the place. I bolted towards her, grabbed her out of the chair and hurried into the bathroom with her. I didn't have her venting tube with me but her aide brought me her feeding tube so I could at least try to get air out of her tummy so that she wouldn't throw up. Thankfully, it worked.

In kindergarten, Faith didn't have any near throw-ups during a program, but she still continued to be stiff and nervous and startled when everyone clapped. It was a little hard to watch and I wondered if sticking her in front of a large audience just to be in a school program was the right thing to do. There were times both me and her dad wanted to run up and rescue her.

With a little help from her music teacher, Faith even said her two lines!

Last night was different. Maybe Faith has gained confidence or maybe she is just much more comfortable doing things with her classmates. Whatever it was, I could not stop smiling as I watched her sing along to the songs. 

Some words she sang so loud that we could hear her voice and when the audience clapped, she barely flinched. It's a wonderful change and I know as she continues to grow and mature, she will continue to amaze us not only at school programs, but in everything she does.

Check out the video below and watch her sing part of "The Bear Went Over the Mountain." 


 


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It's Been a Weird Week

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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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