Friday, January 29, 2010

To Send or Not to Send

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 morning Faith was sleeping so well I didn't want to wake her up. I decided to let her sleep and just go to school late. Well, shortly after making that decision she woke up but she wasn't a very happy camper. She kept saying she wanted to go back to bed but I knew she wouldn't go back to sleep so we began our morning routine. When I picked her up later that day, she seemed fine so I made the decision for her to go to hydro and physical therapy.

This morning was a whole other battle. Although she slept well she kept saying, or rather screaming, that she wanted to go back to bed. This was the crankiest I had ever seen her before school. Was I making the right decision? She seemed better though as we headed out the door and got loaded in Tina's van.

At school, however, she was less than thrilled to say goodbye to me. Should I have taken her to therapy yesterday, I wondered. Maybe it was too much for her. At that point all I could do was say a little prayer for her and be thankful that after school she had nothing going on and she could just stay home and rest.

Next week, the decision making will start all over again but hopefully her cold will be completely gone and I will be able to send her to school with a less heavy heart.

Monday, January 25, 2010

Together Moms Have Super Power

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.

We picked a day that was semi-warm to try it out. I was surprised at how easily the two of us were able to pick Faith's chair up and fit it into her van. And although it's not optimum for her, Faith does sit okay in Tina's daughter's chair. The best part of it all though is how much fun Faith has going to school and back home in the van. She laughs and giggles when we put her in the van and she loves having Tina's daughters clamour all over her trying to help get her buckled in the seat.

There have been many days this winter that I have been so thankful for Tina's kindness and willingness to transport Faith. I really didn't think winter would be such a problem being so close to the school. But God knew and He made a way to get Faith to school. He also showed us that when moms get together such problems can be solved and we have Super Power to get through all of the difficulties and challenges that life hands us.

Wednesday, January 13, 2010

The Missing Arm

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 arm. Which apparently, I forgot to do yesterday morning.

I was a little embarrassed about Faith having a one-armed chair yesterday. But today, I was able redeem myself because not only did I remember her arm, I also remembered her feeding, her tray, her extra changing supplies and her strawberry shortcake doll for show and share. Even Faith's aid was impressed!

Tuesday, January 5, 2010

Adults Living with Congenital Heart Defects

Adults Living with Congenital Heart Defects

Who's the Patient?

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 expecting to find a child and asks, "who's the patient?" To which I reply with a half-embarrassed smile, "I am."

So there I sit all by myself on the pediatric floor surrounded by parents and their kids. I guess I've learned to accept this and I do find it a little more comfortable than sitting around with the old folks in the pacemaker clinic. It is a strange feeling being the oldest on one floor and then the youngest on the next. But such is life. By the way, did I mention the echo looked great and my cardiologist is very happy with how I'm doing? The good news really makes it all worth it!

To find out more about the phenomenon of adults living with congenital heart defects you can check out my Hub on this topic, posted above.