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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Sing Along with Faith
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One of my favorite sounds in the whole world is to hear Faith sing. She has such a sweet little voice and to hear her sing always brings a smile to my face. I really get a kick out of her singing when she's driving her power chair down the hallway. As I slowly walk behind her, she belts out, "1,2 buckle my shoe, 3,4 four shut the door..." She reminds me of me singing along to the radio while driving my car. But for her - she doesn't need a radio!
When we are in the car together, I have K-LOVE playing on the radio and she always asks, "what's this song called?" She listens to the song then the next one will come on and she'll ask the same question. Sometimes I don't know the answer and I'll tell her, "I don't know what this one is called." Then she'll say, "It's about Jesus."
There are some Christian songs she knows the words to and when she sings along to those, I am so proud of her for listening so well to the words and then being able to repeat them. She especially likes to sing "Mighty to Save," "Open the Eyes of My Heart" and "He Reigns." Other times she just likes to listen, and she'll say, "Praise the Lord, mommy" and we'll lift up our hands together and wave them in the air.
Just the other day we were sitting on the couch together and I asked her to sing me some songs. She sang "Hey diddle diddle", "This old man", and the "Itsy Bitsy Spider." And while singing she added her own words like, "Yeah" and "come on everybody!"
Then she told me she was going to sing the "Itsy Bitsy Spider" in Spanish. WOW! I briefly wondered if they had learned that at school. Then she began to sing, "The itsy-bitsy spider went up the waterspout, uno. Down came the rain and washed the spider out, dos. Out came the sun and dried up all the rain. Tres. So, the itsy-bitsy spider came up the spout again. Ocho." Oh well, so it wasn't in Spanish but at least she tried to throw some Spanish in there and she did come up with it all on her own!
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...
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. ...
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...
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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