Faith's Mom's Blog

Faith loves to bake. And as she informed her respite care provider the other day, "I'm really good at mixing!" She likes to watch all of the ingredients go into the bowl, and then I help her stir it all together. She watches intently as I put the baked goods - usually muffins or cookies - into the oven. I turn on the timer and she knows our creation is ready when the bell goes, "DING!" I'm not sure if it's a good thing or not that I don't really bake all that much. Probably better for weight control but those baked goods sure are yummy with a cup of coffee. Faith still gets her baking time in though as all of her respite care providers have baked with her at one time or another. One of her providers even bought her the cutest little apron. Yesterday, while Kimberly was watching Faith, she informed Kimberly that she wanted to make something in the kitchen. So, she and Kimberly searched in the pantry for something they could make. Aha! A little b...

Growing up, I really never thought about having children. The fact was my cardiologists always told me I would never be able to have a baby. It never really bothered me. Instead of having children, I figured I would just have cats and dogs. Seriously, I loved animals and the pets I had while growing up gave me great comfort and lots of joy. Then one day, as a twenty-four-year-old, I went to visit a co-worker who had just had a baby. When I left after seeing my friend and her tiny little girl, I felt sad that I would never be able to have that experience. Fast forward two years. Thanks to the heart surgery I had when I was 25, I was doing very well, health wise. I was also seeing different doctors - those from the Mayo Clinic in Rochester instead of those in Minneapolis. These cardiologists told me there were women who had the Fontan surgery who have also had babies. So, after getting married in 2002, my husband and I didn't really do anything to prevent having a baby.  When I ...

We do not travel with Faith very often. Once we had to take her to Minneapolis because Rob had an interview with the INS and his wife and child were required to be there. She was only about 10 months old at the time. We also flew to Toronto for Christmas when she was fourteen months old. Both of these trips took place pre -wheelchair and pre -feeding tube, so it wasn't so bad. As she got older, however, she attained more equipment, and it became more and more difficult to travel with her.   There was one trip where I had to go to Rochester for possible gallbladder surgery and we actually rented a jeep in which to fit all of our stuff. The only vehicle we had was a 2001 Hyundai Elantra . It was January and very cold. We took Faith to the Mall of America (where she is shown to the right getting a feeding) so we could try to warm our spirits on such a freezing cold trip. Two years ago, we flew once again to Toronto. It was a nightmare and we vowed never to do this again. Faith had ...

It's one of the most anticipated events of the summer. We wait and wait and try to be patient. We moms question each other why it hasn't happened yet. We begin to stalk the school, driving and walking by even when it's well out of our way.  Then, finally, it's there. We see it! The white paper with typed names posted on the school door. The class list is out! Moms, dads and kids alike rush to read the list. And then everyone walks away, some with smiles on their faces while others with tears in their eyes. I was one of those with tears in my eyes as I looked at the class list. Faith did not get the first-grade teacher I was hoping she would get. She did not get into the same classroom as one of her best friends. And she will only know a few little girls in her class. BUMMER! I felt a little better after talking to one of my good friends. Her son had the teacher that Faith will have this fall. She said she believes Faith will do well with her. I had been hoping Fai...

Faith was around two years old when she got her Mic-Key button and began eating via feeding tube. And honestly, it was a nightmare. She hadn't been eating enough to gain weight or to meet her nutritional needs so this was really our only hope. She had the surgery and was discharged that night.  When we brought her home, we did just as the nurses told us to do. We hooked up a large syringe to her feeding tube that was connected to her button and slowly allowed the liquid to go into her tummy. When we first started out, she was receiving three ounces of Pediasure every three hours, four times a day. Sometimes the liquid went into her tummy too quickly and she ended up with an upset stomach, vomiting it back up. We learned to go as slow as we could, which took a lot of patience. It took us about 30 minutes to get all three ounces into her tummy. Another issue with her enteral feedings is that if she moved too quickly after receiving her feeding, she would throw up. We had to learn t...