Faith's Mom's Blog

Rob and I have certainly had our share of transitions since getting married nine years ago. About seven months after having Faith, we closed our desk-top publishing business in Watford City and made the move to Bismarck. This was all totally unplanned but due to Faith's medical needs, we felt God was preparing the way for us to make such a huge transition. Since coming to Bismarck, there have been more transitions including a few moves from apartment to apartment and having to get used to Faith's adaptive equipment, tube feedings, and the many therapy appointments that go along with having a child with special needs. It seems that just when we get into the groove of a new transition, another one comes our way. And more often than not, they are quite unexpected. This latest transition involved me going back to work after being home with Faith for three years while Rob took his turn once again to be a stay-at-home dad. At first, Rob and I were a little stunned about our situa

Faith recently went to see a surgeon regarding the placement of a baclofen pump . At our last appointment with her specialist who oversees all of her therapy we were shown x-rays that proved her left hip was about 40% out of its socket. For this reason, we set up a consult with a surgeon and were looking at getting the baclofen pump sooner rather than later. I was surprised to find out that the surgeon has some reservations about inserting the baclofen pump. The main reason for his reluctance is that Faith is still pretty small. They normally won't put the hockey-puck-sized pump in a child that is less than 45 pounds, which is pretty much what Faith weighs. There is extra concern with Faith because there is even less room in and around her abdomen due to her having a mic-key button. When Rob mentioned maybe waiting a year until Faith grew more, the surgeon said that was probably wise. But still, there is her hip to think about. I really don't think her other doctor is going

First of all, I feel totally guilty for neglecting my blog and I cannot believe it has taken me so long to be able to play catch up. We recently drove our van all the way to Toronto and back home again - and logged 2,885 miles in doing so. When I told Faith's teacher that she would be missing school for eight days as a result of our vacation, she asked if we would do a travel journal so Faith could share it with her class. Here is that journal that she got to share with her class on her 8th birthday which was this past Tuesday. On Saturday, October 8, 2011 me and my mom and dad left from Bismarck, North Dakota and drove in our van all the way to Toronto, Ontario Canada.  Faith is all settled in and ready to do some serious traveling! Canada is another country and is often called “our neighbor to the north” but to get to Toronto we always kept driving east. This is where my dad is from so we went to see my grandparents who live there along with other friends and relatives. I

Faith did great yesterday getting her x-rays taken. She stayed nice and still so that the technicians could get three good pictures of her hips. Shortly afterwards we headed upstairs to talk to the doctor and to see the pictures we had just taken. When the doctor pulled them up on the computer, even I could tell it wasn't good news. Faith's left hip has proceeded to come out of its socket. We had been hoping and praying for no changes, as the last two x-rays have shown. This time, though we could clearly see this was no longer the case. Her hip is about 40% out of its socket. At this point, we know we have to take action. If not, Faith's hip will, over time, become completely displaced. We set up a consult with a surgeon for November 1. From there we will set up another date for Faith's surgery to get her baclofen pump . This will be the first procedure for Faith where she will have an extended hospital stay - most likely 3-5 days. Thankfully, this can all be done h

Lately I've been inundated with paperwork so that Faith can continue to receive SSI and Medicaid. Just recently I had to fill out forms to prove to the good  people at Social Security that Faith still has a disability and is still eligible to receive funds. It was a lot of paperwork considering I had to verify all of her doctor's appointments within the last 12 months and also to prove she had been seeing a physical therapist, occupational therapist and speech therapist. Faith went to the SSI office with me on Monday since she didn't have school. The little waiting room was packed but we thankfully didn't have to wait long. When we left Faith yelled out, "Bye guys!" She was pretty happy to get out of there. Most people who know Faith knows she has a slight obsession with cupcakes. She always wants cupcakes for her birthday and for Christmas we make and give out Happy Birthday Jesus Cupcakes . She has had a pair of pink cupcake pajamas and now has green one

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 of him when he first came out on TV. But as I watched along with Faith, I discovered all of the cute songs and some of the good things that Barney had to share.  I will admit though that

Second graders at Centennial Elementary get to enjoy a program called SPLASH that gives them a chance to go swimming once a week in September.  Instructors at the YMCA teach the kids different swimming strokes, water safety and survival skills. The kids are in the water for about one hour. Of course since Faith loves swimming I thought she would be very excited. Unfortunately though she seemed more nervous about it than anything. We skipped out on the first week but we did make it this week and she had a blast! It was hard to tell who was having more fun - Faith or her instructional aide that was with her in the pool. Faith kicking her feet up in the water Faith tries to touch the bottom Faith tries to do a back float