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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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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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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