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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Making Adjustments as Faith Grows

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Faith is growing. It's been two years this month that she has had her current wheelchair and now it's time for some major adjustments. Since first getting her chair, she has probably grown five inches in her trunk alone. She's ready for a new seat and a new backrest and also a new harness.

Another thing she is growing out of is the orthotics she wears on her feet. Soon, she'll be fitted for a new pair. In the meantime, she had some extensions put on so that her toes wouldn't be sticking out of them!

She's also ready for the next size up in diapers, but oops! They don't make anything bigger than a size six, so we've been trying out some extra small children's briefs that seem to fit her well. 

I must say, I would love to see the day she no longer has to wear any type of diaper or brief and this summer might be a good time to see if she can be potty trained. I know of other kids with cp who were trained around 8 years old. Hopefully her muscles will be able to cooperate and will have control in that area. That would be so nice, and I know Faith would feel like such a big girl!

Although there are some adjustments that need to be made, I'm so thankful for my growing girl!

Faith at the age of three in her very first chair - her Kid Kart
Faith in her new chair when she was five. Doesn't it look big for her!
Look how big she is in her chair now!

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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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Faith's 4th

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Every year, the one thing Faith wants to do for the 4th of July is go to the parade in Mandan. It surprises me how much she loves parades, considering the noise and crowds of people. About 20,000 people attend the annual 4th of July parade, and it's filled with very loud firetrucks, big machinery, trucks, and other kinds of loud noises. This year, there was also the concern that it would be more crowded than usual. This was due to the fact that part of the normal parade route was under construction.  Besides all that, the Parade starts at 10:00, which means Faith needs to wake up pretty early so that we can arrive in time. Neither of us had slept well the night before, so I was already concerned that she didn't get enough sleep to get through the long, busy day. I let her sleep as late as possible and prayed for us both to have enough energy to make it through the day. It helped that we could do her morning feeding enroute and also during the parade. She normally doesn'...
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Faith's Blended Diet and Other Things that Help with Her Digestion

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This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time!  Faith receiving food through an NG tube in the NICU.  Grandma giving Faith a bottle when she was 2 months old.  After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she...
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