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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One Year Ago: My Trip to Mayo
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Today I thought it was quite fitting that on my one-year anniversary of my new pacemaker, I was wearing a 24-hour Holter monitor! It's not because I'm having any issues with my pacemaker. Instead, I'm just preparing for my upcoming cardiology appointment next month.
Thankfully, my cardiologist from the Mayo Clinic in Rochester, MN comes here to Bismarck, so I don't have to make the 1,000-mile round trip again! By the way, isn't amazing how small these Holter monitors are nowadays? I remember having to wear much larger ones that could not be hidden very easily, plus it was hard to sleep being attached to a big clunky machine. Last night, I hardly even knew this little one was there!
I got my original pacemaker in August of 1999 but because the lead was getting old, my cardiology team wanted me to get a new one. It was last year on this day that I was recovering from the procedure. It still bends my mind how God took care of every single detail and that I had found enough people to look after Faith for the five days (and four nights) that I was gone.
I am still incredibly grateful for all those who stepped up to look
after her. I'm also thankful my sister was able to take me to Rochester. Faith
still talks about it like it just recently happened. She often mentions
that her aunt and little cousin stayed with her a couple of nights and
how patient she had to be.
She also talks about how our friend Mandi looked after her, and she even had her kids and husband come over to visit.
I don't know what I would have done without her as she came every
morning to relieve the overnight staff and get Faith out of bed. She
even sent me a picture of Faith every day!
Faith had loads of fun while I was gone!
Faith told me when Grandma and Grandpa were here, Grandpa did his
crossword puzzle and then took a nap. (I think it's cute which details stick in her mind!) There was also the respite care
staff who stayed over a couple of nights and also a few other friends
who helped out. She will truly never forget it. Most of all though, I
think she is proud of herself for getting through that time and being so
mature. It helped that I got to talk to Faith every day and even did a
couple of video chats with her, which she loved.
Even though
it was for a medical procedure, my sister and I made the best of it and
had plenty of laughs along the way. Especially when on the way home our
sister was heading back from a work trip and we managed to catch up to her on
the Interstate, which you can see in the video below!
The double rainbow we spotted just as we crossed into Minnesota
After driving in the dark (and rain) through the Cities, we were thankful to reach our comfy hotel room.
Our hotel was conveniently located just across the street from where I would be having my procedure. This is also where I had my last open-heart surgery in 1999 and my original pacemaker implantation.
Taking the shuttle from our hotel to the downtown campus for a day of medical tests.
Hanging around waiting for the last appointment of the day.
My sister even was able to get some work done!
After a long day, we were able to eat at our favorite restaurant in Rochester!
Me after my procedure...I was just a tad groggy!
Grateful that things went so well!
After a night in the hospital and an extra day recovering, we were ready to hit the road again!
Who is that ahead of us on the Interstate? Let's find out!
Tired but happy sisters reunited in Bismarck!
Grandma is there too, and Faith is super excited to have us all there!
Hopefully it will be a while before I need to go to Mayo again for a medical procedure. If I do though, I know God will provide and Faith will be well looked after!
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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