Faith's Mom's Blog

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...

 Due to logistics and other reasons, Rob was not able to witness Faith coming into the world. She was born in Rochester, over 600 miles from home. Rob found out he was a daddy when he stopped in Fergus Falls, Minnesota to make a call to his mother. She told him he was a daddy! He got to Rochester just before midnight on the day of her birth - October 25, 2003. When Rob first saw Faith's tiny little body - just over 2 lbs., she was covered with tubes and lines all hooked up to different apparatuses. What was supposed to be one of the most joyful events of his life was one of the most frightening. After spending time with a daughter, he couldn't even hold, he came down to the hospital to see me. I was still pretty out of it, but I do remember coming up with Faith's middle name - Faith Jean Armour. (Faith has both mine and Rob's middle names). We visited her in the NICU as much as we could. She looked so tiny and fragile, but we knew she was a fighter. Finally, one wee...

Every day this week been a great day. Each day has either brought new adventures, fun with friends, good news, and even a little reunion of sorts. And on top of all that, Faith has been sleeping well, which is always a huge blessing to our family. Since last Monday, Faith has been attending a summer school program called Camp Edventure at her school. She goes from 8 a.m. to noon, Monday through Friday. The program is six weeks long so she'll get a nice break in August before starting first grade. Her mornings have been busy and this week our afternoons have been busy yet fun-filled as well. Monday - Faith and I took the long, scenic route, mostly uphill, walking to her friends' house for a playdate. We spent the whole afternoon at their house playing outside in a tub of water filled with toys and her friends showing her worms they had dug up. It was such a beautiful day to be outside and I was so thankful to our friends for sharing their backyard with us! After nearly four...

It can be hard for us to find toys that Faith likes to play with, especially for longer periods of time. There are very few toys we have found that she can play with entirely on her own. When she was three years old, her early interventionist introduced us to the world of adaptive toys - or toys that are adapted so that kids with disabilities can play with them. We bought her three adaptive animal toys, plugged her button switches into them and when she pushed the button it would cause the animal to move and make a noise. She had a drumming bunny, a kitty cat and a duck. Oh yeah, and an adaptive toy coffee maker! These toys were great for teaching her cause and effect, but she got bored of them pretty quickly. We haven't invested much money into adaptive toys because they are so expensive plus we don't know for sure if when we buy them for her, she's even going to like them. One adaptive toy we did buy her recently for her birthday was an adaptive PlayStation control...

Faith loves getting her hair cut. Well, she may not like the actual cutting part since I have to hold her head down or to the side so her hairdresser can cut where and how she needs to cut. Sometimes she is very squirmy, and her head is all over the place, especially when she's talking and excited.  She does love getting her hair blow-dried though. But I do think a lot of Faith's excitement about getting her hair cut has to do with the person who does her hair. Her name is Julie and she's my stylist too. Julie is sweet, kind, pretty, and very talented as well. We found her when Faith's occupational therapist recommended a salon in Mandan . That was Faiths' first haircut at a salon. Rob's parents were in the country, so Jean came with us. Faith was so good, and the hairdresser did a great job with her. I think she only charged us like $5.00 or something. (Then Jean gave her a $5.00 tip). I then decided I wanted to get my hair done at the same salon. The lady w...