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...
Get link
Facebook
X
Pinterest
Email
Other Apps
Faith's Thankful List 2015
Get link
Facebook
X
Pinterest
Email
Other Apps
-
To continue with our little Thanksgiving tradition, I asked Faith to list all of the things she is especially thankful for this year. Once again, as I looked over her list, I realized it's mostly the people in her life for which she is the most grateful.
Since she is such a homebody, she especially loves it when people come to our place to visit. However, the three of us did venture to Grandma and Grandpa's for Thanksgiving Dinner where she had a blast!
Here are some of the people she is most thankful for, along with a few other activities she enjoys doing. "My Whole Family" - One time when I spoke at New Life's Redefinition Cafe service, her grandma, grandpa, uncle and aunt showed up. Afterwards she commented, "I can't believe the whole family came to church." So, when she says her whole family, she is talking about her extended family. She especially loves having visits with Grandma and calling Grandmother, Grandfather, and Auntie Joh on the telephone.
Faith with many members of her whole family on Thanksgiving Day
Going to Church - Faith continues to be thankful for New Life's Redefinition service and it is one of the highlights of her week. She is especially grateful that Pastor Marc takes time to pray for her before he races off to the Celebration service (which is held in a different facility). She also enjoys hearing the different speakers (especially Andy Hill) and listening to the worship music, which leads me to the next activity on her thankful list.
Worship Music - Faith has become more interested in worship music this year more than any other. I believe part of it has to do with her music integration sessions but also because we have been attending an Immersed Night of Worship at church held once a month. It's led by one of her favorite worship singers of all time - Monica. We've also been listening to more worship music at home as a family, especially right before bedtime. Her absolute favorite singer is Michael W. Smith!
Below is a video I happened to record when New Life's worship team did the music at the Healing Festival held in October. Faith loves watching it over and over again!
Stories with Mom - Not only is Faith thankful that her mom loves reading her stories, but she is thankful she gets to make up her own stories. This is something we just started and I'm realizing it's a great way for her to learn what an adjective, noun, verb, and other parts of speech are.
Basically, I write an outline of a story and have her fill in the blanks - sort of like "Mad Libs" (which I loved doing when I was younger and which Rob has never heard of!) I was inspired to make up our own one night after reading one of her favorite Arthur books, "The Mystery Babysitter." The book contained a fill-in-the-blank story on the back, and she loved it!
Here's an example of a story we made up about her dad:
My dad is very (adjective) happy. He likes to eat (flavor) chocolate cookies. He likes to drink (liquid) water, apple juice, and vinegar. One day my dad took a nap on the (piece of furniture) TV. He didn't wake up until (time) 6:30. He wanted to play his game when he woke up but his (body part) head was still asleep. My dad is (adjective) silly. I love him and he loves me.
Some other things that made this year's thankful list include:
Wheel of Fortune
Daniel Tiger
Apple juice
Cheetos
Prayer at the Healing Rooms
Her doll, Baby Allie (whom she just started calling her baby sister)
Faith certainly has much to be thankful for and I am glad she recognizes her many blessings. I pray that you, too, take time to thank the Lord for all of your blessings. For those who are going through challenging times this holiday season, I pray you will find true peace and joy in the midst of your struggles - the kind that is only possible with Jesus.
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'...
Comments
Post a Comment