August Was Moving Month

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It's been a while since I have put up a blog post. I also haven't been very active on Faith's Mom's Facebook page. That's because the month of August was dedicated to moving!  About 4 years ago, Faith and I moved from the apartment she grew up in, to a different one in northeast Bismarck. The primary reason for the move was to have underground parking so that getting her loaded into the van by myself during our cold, snowy winters would be less of a challenge. We also needed to find a place in which the elevator didn't break down on a regular basis!  One of our last sunsets at our old apartment  That place served us well, but the drive to her day program, which is located across the river in Mandan was time consuming, not to mention, expensive. I drove about 45 miles a day and used up a tank of gas a week!  Searching for a New Place  Before our lease ended, I began praying about finding somewhere else to live. A condo would have been nice, but surprisingly not a...
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The Baclofen Pump Decision

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Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with the baclofen pump. We felt this was the right decision and that Faith would benefit if the pump helped to decrease her tone.

After making the decision, Rob sat down with Faith and explained to her that she was going to be getting something called a baclofen pump and that she was going to have to be in the hospital. 

She of course, was not too happy about this news and every now and then she would let us know it by yelling, "I'm not going to get a baclofen pump and I'm not going to the hospital."

Rob called the clinic to get the ball rolling and ended up leaving a message. We were surprised when no one returned our phone call right away. 

When we finally did hear from them, they gave us the surprising news. They had made a managerial decision at the clinic to stop putting baclofen pumps in children because there is not enough staff on hand to look after them.

It is my understanding that once a person gets a baclofen pump, the person has to be monitored very closely at first in order to get the proper dosage. The dosage can be tricky as too much can cause decreased tone in areas that already have low tone. For Faith that is in her neck and trunk. There needs to be just enough administered so that the high tone will decrease, and it will help her with her functionality. Too much baclofen can cause harm and even death.

When we first began to explore the idea of Faith getting her baclofen pump, I talked to a mom whose child had one. While she said it had helped her son immensely with decreasing his tone, she also had concerns because there weren't enough people to look after the baclofen pump especially in cases of emergency. This caused Rob and I to continue to pray about it and now in the end, it is for that very reason we can't get the pump for Faith.

We are relieved that we did not go forward with the decision of Faith getting her baclofen pump - especially if she started having problems with it and there was no one who could get her the medical care she would need. There is still concern about her left hip so we will continue praying that it remains stable. As for Faith, I guess she was right, she's not getting a baclofen pump and she's not going to the hospital!

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August Was Moving Month

-
Image
It's been a while since I have put up a blog post. I also haven't been very active on Faith's Mom's Facebook page. That's because the month of August was dedicated to moving!  About 4 years ago, Faith and I moved from the apartment she grew up in, to a different one in northeast Bismarck. The primary reason for the move was to have underground parking so that getting her loaded into the van by myself during our cold, snowy winters would be less of a challenge. We also needed to find a place in which the elevator didn't break down on a regular basis!  One of our last sunsets at our old apartment  That place served us well, but the drive to her day program, which is located across the river in Mandan was time consuming, not to mention, expensive. I drove about 45 miles a day and used up a tank of gas a week!  Searching for a New Place  Before our lease ended, I began praying about finding somewhere else to live. A condo would have been nice, but surprisingly not a...
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Cari's Cardiology Update

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Normally, Faith is the one with all of the appointments but this week it has been my turn. On Monday I had my annual echocardiogram. On Tuesday I had my pacemaker device check and appointment with the cardiologist who comes to Bismarck from the Mayo Clinic in Rochester, MN.  The doctors who come are pediatric cardiologists who also specialize in adults with congenital heart defects (CHD). This saves anyone in the area who has a CHD from having to travel to Rochester each year. It is very convenient! (I do travel to Rochester to get my pacemaker changed, though!)  The Bible verse that has kept me going all these years! When I saw the doctor, we mainly discussed two things: my Fontan and my pacemaker. But first, a little background. I was born with double outlet right ventricle (DORV). Basically, this means both my aorta and pulmonary artery stem from my right ventricle. Because of this, my left ventricle does not really do anything, which is why this CHD is referred to as a sin...
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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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Singing Along at Barney's Birthday Bash

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This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   Had it not been for the one fateful day that I had a craving for Little Caesar's pizza, I might not ever have known that Barney was coming to town. But there I was at the counter waiting for my medium pepperoni pizza when I noticed a flyer with a picture of the big purple dinosaur. He was coming live to Bismarck with his friends, BJ, Baby Bop and Riff - I couldn't wait to tell Faith. Barney and friends appear live at the Bismarck Civic Center I don't know how old Faith was when she saw Barney for the first time. A receptionist at pediatric therapy gave us a Barney VCR tape and Faith loved it. I started letting her watch Barney on PBS and then we started collecting the DVDs .  All the while, I couldn't believe I was letting my daughter watch Barney - me and my friends made so much fun...
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