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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Happy Birthday Grandma!

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Since they moved to Bismarck three years ago, Faith has gotten to spend more time than ever with her grandparents and has especially enjoyed the times she gets to spend with her grandma. She loves her grandpa too, but he can be a little unpredictable with his sudden sneezes or coughs. Plus, he tends to talk a little loudly due to his slight loss of hearing from being around so many trucks and machinery throughout the years! 

Faith with one of her favorite people in the world - Grandma!

Faith really likes having Grandma over on Saturday afternoons to hang out with us. Usually, Grandma brings pizza and we have lunch (although Faith has already said this weekend when we see Grandma she wants to go to Perkins instead). After that, we hop into the van and take Grandma to the library with us, followed by a trip to Target or the grocery store. Once, Grandma even stayed with Faith for about 20 minutes while I went to get Rob at the office. 

Faith likes the comfort of being in her own place so it's a little harder getting her to go over to Grandma's. We're taking baby steps. Last weekend when Grandma was here, Faith decided we should go somewhere for pie. Grandma said she had some pumpkin pie at her house, so we drove to her place to get it. Grandpa happened to be outside tooling around in the yard when we arrived.

Grandma and Grandpa's place
Faith with Grandma and Grandpa

I rolled down the window and he had this squirt bottle of soap and water and he squirted me with it. Faith didn't know what to think about that and afterwards kept asking why Grandpa had squirted me. I tried to tell her it was just Grandpa teasing me. (See, he can be quite unpredictable!) Needless to say, Grandma grabbed the pumpkin pie and Cool Whip and we high-tailed it out of there back to safer quarters!

We're hoping this summer to have many more adventures with both of them but for now we'd just like to say:

Happy Birthday Grandma we hope your day is as special as you are to us!

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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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