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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The Ups and Downs of Faith and Food

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This past week, Faith did something for the first time ever at school - she ate lunch. She tried everything on her tray, which included a turkey sandwich, glazed carrots (which she ate the most of), strawberries and a few bites of a breadstick.

Because Faith still needs help eating solids, her occupational therapist had Faith and a few other girls eat lunch together in a separate room. Faith has made the comment when we feed her that "that's for babies" meaning she knows that this is how babies eat - being spoon-fed by someone else. 

Since we know she is sensitive to this, we decided not to have her join her classroom at lunch for the time-being. But the fact that she actually got to have her lunch replace one of her tube feedings at school was very exciting. The next day she got to eat one of her favorite foods - mashed potatoes and gravy.

Each day the kids at school get a choice between a chef salad, ham or turkey sandwich, and a hot meal. Each of them comes with different side dishes. We knew that one day an enchilada bake would be too much for her, so she opted for the turkey sandwich again.

Faiths loves to bake cookies - and eat them too!

While eating lunch has been a big step forward, it has not come without consequences. Faith became constipated and over the weekend on top of that, she came down with a cold. Yesterday she was not able to keep anything in her tummy and threw up throughout the day.

Now today, we are sort of back to square one with her feedings. This morning, she tolerated about 4 ounces of Pediasure diluted with water which is a good sign. Hopefully we'll be able to get her feedings back on track and then try a few more school lunches this week. 

She may not be able to eat lunch everyday if she gets constipated - for her it's just one more thing that requires the perfect balance. She is on her way though, and as she continues to eat more solids, maybe one day she will eat school lunches every day of the week without any negative consequences!

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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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