Faith's Mom's Blog

As a mom, I have to make many decisions on a day to day basis. What to make for dinner, how to spend my free time, what to buy at the grocery store, what we need from Wal-Mart, etc. The list goes on and on. But one of the hardest decisions I have to make is whether or not to send Faith to school when she's not feeling 100%. Of course I'm not going to send her if she has a fever or if she's throwing up. But what if she just has a cold? Do I let her stay home and rest or do I send her to school anyway? On Wednesday of this week I opted to keep her home. She hadn't slept well the night before and she was really mucousy and very tired. But I noticed throughout the morning she seemed to feel better and she was her usual happy self. Could she have gone to school I wondered? That night she didn't even act like she had a cold the way she was laughing and carrying on with her dad. I decided if she slept well that night I would send her to school in the morning. Thursday

It is yet another cold, blustery day on the Northern Plains. The temperature may be above zero, but the wind makes it biting cold. Personally, it is not the kind of weather in which I want to be pushing a wheelchair. Frankly, I probably wouldn't even be able to push a wheelchair through this wind especially over the snow-drifted sidewalks and icy patches. That's where my friend, Tina comes in. She has truly saved the day more than once this winter. It was in December during a cold snap that Tina noticed me pushing a very bundled up Faith to school. Her heart went out to us and that night she asked her husband to take one of the seats out of their van so they could transport Faith to school. Tina called me and wanted to try it. Although I admired her enthusiasm, I had my doubts that it would work. Faith's chair was heavy and we were going to have to lift it up into her van. Plus, I didn't know if Faith was going to sit very well in one of her daughter's car seats.

I'm sure by now Faith's teacher's aid thinks I'm somewhat of a space cadet. On occasion I forget to bring things to school, like for instance, Faith's feeding. Faith's aid has gotten to the point where she writes little reminders to me in our communications notebook. Sometimes, though, even with these helpful little reminders, I still forget. But yesterday was the real kicker! When I got Faith to school, her aid noticed one of Faith's arms from her chair was missing. Let me explain. Faith's chair comes in two parts - her seating system and a base with wheels. At home she has an extra base which enables Faith to power her own chair. In the process of switching bases, we take one of the chair's arms off and replace it with another arm for the power base. This arm has a little computer on it to tell Faith when the chair is on. In putting Faith's regular base back on, I have to take the computer arm out and replace it with the chair's normal ar

Adults Living with Congenital Heart Defects

Today was the day I saw my cardiologist who comes to Bismarck from Mayo Clinic. Today was the day of my annual echo cardiogram which is basically an ultrasound of my heart. And this appointment was no different than what my appointments have been like in years past. (Except for the fact I was only there for about 30 minutes as opposed to two hours). It was business as usual when I went up to the pediatric floor of MedCenter One. You see, technically my cardiologist is a pediatric cardiologist. But since babies with congenital heart conditions eventually grow up, there is a need for cardiologists who specialize in adults with congenital heart defects. I'm not sure if the receptionists quite get this. Every time I call to make the appointment, the receptionist on the other other end of the phone asks, "and who is this appointment for?" "Me," I answer trying not to sound exasperated. And every time I check in for my appointment the receptionist looks around expec

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