Appointments and More Appointments

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One of the unfortunate things about cerebral palsy (CP) are the many co-occurring health issues that go along with it. Because of this, those with CP have more doctors, specialists, and other kinds of providers they see on a regular basis. While the CP itself mainly affects the muscles, other areas of the body are affected as well, which results in more medical challenges.  For instance, besides CP, some of other Faith’s health issues include: ·          Gastroesophageal reflux disease (GERD) and other digestive issues ·          Scoliosis ·          Bowel and bladder incontinence ·          General anxiety Because of these co-occurring conditions, we have more appointments than the average person. At times, it can all be a bit overwhelming. Faith enjoying a nice fall day On September 23 rd , we ended up in the E...
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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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Appointments and More Appointments

-
Image
One of the unfortunate things about cerebral palsy (CP) are the many co-occurring health issues that go along with it. Because of this, those with CP have more doctors, specialists, and other kinds of providers they see on a regular basis. While the CP itself mainly affects the muscles, other areas of the body are affected as well, which results in more medical challenges.  For instance, besides CP, some of other Faith’s health issues include: ·          Gastroesophageal reflux disease (GERD) and other digestive issues ·          Scoliosis ·          Bowel and bladder incontinence ·          General anxiety Because of these co-occurring conditions, we have more appointments than the average person. At times, it can all be a bit overwhelming. Faith enjoying a nice fall day On September 23 rd , we ended up in the E...
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My Tetanus Shot Ordeal: A Real Pain in the Arm

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Last Wednesday I had my yearly doctor exam and when she said I should get my tetanus shot updated, I didn't think twice about it. The nurse said my arm would be sore for a couple of days, gave me a handout and stuck the needle in my arm.  The next day my arm was sore and although I found it a little harder to pick up and carry Faith, I was glad the pain wasn't going to last long. Boy was I wrong! But not only was my arm sore, my whole body was. I felt achy and extremely tired. According to a medical site on the Internet, these were mild side effects of the Tetanus shot. If these were only mild side effects, I would really hate to have them at a moderate or severe level. My arm is still red and sore on day 2 after my tetanus shot. On Friday, two days after getting the shot I felt so tired that I took a four-hour nap after getting Faith off to school. Then on Saturday I took a three-hour nap up until 7 o'clock, but still felt tired and was able to go back to sleep around 10. ...
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Faith's 73-Day NICU Stay

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September is  NICU Awareness Month . For those who don't know, NICU is an acronym for Neonatal Intensive Care Unit. According to  World Metrics  50,000 premature babies in the United States receive care each year in the NICU.  The average NICU stay for a preemie is 25 days. Honestly, that number surprises me, as I thought it would be much higher than that. Along with preemies, full-term babies born with certain health issues, such as respiratory distress, jaundice, and other kinds of infections receive care in the NICU.  Tiny Faith in her isolette at Mayo  But for Faith, whose untimely birth consisted of an emergency C-section 11 weeks early, it took 73 days before she was discharged. Those 73 days were a major emotional rollercoaster! And for many reasons, one of which was being nearly 600 miles from home as Faith was born at the Mayo Clinic in Rochester, Minnesota. (You can read what led up to that on my post,  October 4, 2003: A Day I'll Ne...
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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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