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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Summer School

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Daddy got to take Faith to her first day of summer school

Faith was full of questions this morning getting ready for summer school, or Camp Edventure. Many of them she already knew the answer to since we had been talking about it for a while. I think she wanted to be reassured of who her teachers were going to be, who was going to be her aide, when I was coming to get her etc. One of the questions she asked was, "How many days of summer school do I have left?"

She hadn't even begun, and she already wanted to know when it would end! Seriously though, towards the end of the regular school year, she fought in the mornings about going to school. I think she was just getting tired and wanted a much-needed break.

She expends so much energy at school that she is exhausted at the end of the day. A nurse told me recently that kids with CP put out three times more energy than the average child because it takes so much work for some of them just to keep their heads up and try to have some control of their muscles.

I know she has enjoyed her week off from school, but I think once she gets into the routine of going to school for four hours a day, she'll really enjoy that time.

This morning, since Faith starts school at 8 a.m., Rob and I both got to walk her to school. Originally, we had Faith scheduled to take the bus to school, but we figured since there was no snow to worry about anymore, we could just walk her down there and back home. Also, the bus wasn't able to get her until 8:05 and I didn't want her there later than the other kids. I think she's a little disappointed to not take the bus though.

When we got to school, Faith was especially happy when one of her friends came over to her and asked if she could push Faith inside. And when she saw her aide, she yelled out, "Hi Julie!" There was a little bit of confusion with some kids there from other schools not sure where to go. Due to the flood situation, many kids had to attend summer school at a different one than was originally intended for them.

During summer school she'll still be getting speech, occupational therapy, and physical therapy once a week at school along with specialized academics twice a week. She'll also be getting physical therapy and hydrotherapy at the clinic once a week as well.

I'm sure these 27 days of summer school that are left will go by extremely fast!

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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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