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Showing posts from January, 2012

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 ...

Conscious Sedation - A New Experience for Our Brave Girl

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I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her Botox shots. I was pretty bummed that I couldn't be there. January marks our busiest month at work so taking time off is limited. I already have to take time off on Monday for an appointment. So, there I was this morning at work wanting to be with Faith and praying that all would go well. Rob and Faith had to be at the hospital at 8:30. Faith's pediatrician was there, along with a few other of Faith's favorite medical providers. She was especially happy to see PBS playing on the television. Seeing something familiar helped to keep her calm. Rob and I have struggled in the past wondering if conscious sedation was the right thing to do for Faith. It just didn't seem like giving her sedation drugs every time she got Botox was very good for her. In the past during her Botox ...

Saying Goodbye...Again

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Last month, we had a sad surprise - that Brittnee, a respite care worker who has been with us for a year and a half, was leaving. Once again, it was time to say goodbye to someone who had become like a part of the family.  It's hard when these respite care girls leave, although it is completely understandable. More often than not, they are college-aged and in serious relationships which lead to engagement and then marriage. There have been three wonderful girls we have gotten the privilege of knowing through respite care services. And I am continually impressed with their maturity, professionalism and most of all, their great care-taking skills with Faith. While it is hard for us to see them go, it is great that there is e-mail, Facebook and even Skype so we can keep in touch. With all of today's technology it makes the goodbye seem not so final. So, to our amazing young ladies who we are blessed to know through respite care - we wish you the best in al...