Faith's Mom's Blog

Today Faith and I both got to do something new together - go to a radio station and do a voice over for a GABR radio ad. I was a little nervous and wasn't too crazy about having my voice aired over five local radio stations. And Faith wasn't crazy about the idea of going somewhere after school besides home. She reiterated this fact all the way to Mandan saying, "I just want to go home." After meeting Kim there (the Medcenter communications director) and the radio guy, we all squeezed into a little room with lots of buttons and a big microphone. I had about four lines to say and I guess it went well considering I did it in two takes. Faith must have forgotten all about home because after I was done she cheered for me saying, "YAYYY!" Then, "My turn, my turn!" She was not one bit nervous or scared when she stepped, or wheeled, up to the microphone. We told her what she needed to say and she said, "NO, I can't do it." When we encour

It's hard to believe that the Great American Bike Race (GABR) is only a month away! We have been involved in this event since 2008 when I formed a team called "Faith's Rockin' Riders" with some ladies at Laducer where I worked. In 2009 we sort of took a break since we were in the process of moving from our old apartment to our current, accessible one but Rob did still ride on MedEquip One's Team. Last year we formed Faith's Fantastic 10 which consisted mostly of our friends. And this year we are gearing up again but with a slightly different name - Faith's Fantastic 12 since we had to expand our team to 12 riders instead of 10! So now there are 1,200 riders taking part in the event instead of just 1,000! GABR 2008 GABR 2009 GABR 2010 We are especially excited this year because Faith, along with her friend, Tanner are GABR Stars this year! GABR stars help to promote this huge fundraising event which means their  pictures are seen ev

It seems Faith was just getting over her last three-week cold when she started coming down with another one. "Oh no, not again," was all I could think. Yesterday I sent her to school even though I knew she was tired because she hadn't slept well all weekend. One of her aides said it had been hard for her to stay on task and stay focused. Last night she was up at 3 a.m. so I knew she wasn't going to do well in school and kept her home. She has been sneezing and sounds a little stuffy but I PRAY she has a good sleep tonight and she can kick this cold much faster than her last one. Last week I took her in to see her pediatrician just to touch base with him since he was available. And of course she was perfectly fine then! He said she may have had RSV which can last three-four weeks. Hopefully that is not the case again this time. I told him I was concerned about her throat because she seems to get a sore throat a lot and was wondering if something was going on with her

There are two ' B ' words that are constantly on my mind and are causing me some serious emotional strain. B riefs and B aclofen. You may wonder what's the big deal about briefs. Well, it is a big deal when your child is 7 years old and has to wear these large plastic diaper like products that resemble a small garbage bag and seem very uncomfortable. Since Faith has been growing (I know that's a good thing) she has finally outgrown her size six diapers which is the largest size they make. She really doesn't seem to mind them but it pains me each time I put her in one. Briefs seem so much more final than diapers - like she will be wearing them forever and I don't know if I'll ever be able to accept that. We haven't ever really worked on potty training. We don't even know if it is a reality because she may not be able to control her bladder. But now because of these briefs and my dislike for them, that is something I really want to start working on

This week Faith had two appointments at Medcenter, one of which consisted of getting her fitted for new orthotics, which by the way are also called AFOs or SMOs. The whole process took over an hour and Faith did great the whole time! She loved seeing her physical therapist again, whom she doesn't see on a regular basis anymore because she gets all of her PT at school. As the therapists worked hard to get the molding on her feet just right, they asked Faith what color of  padding she wanted, what color she wanted for her straps and if she wanted a picture on the back. Faith responded, "You can never have too many accessories!" Jackie and another physical therapist work to get the molding just right for Faith's long, skinny feet. The therapists have to repeatedly fit Faith's foot in the mold, make some adjustments and fit it again. They did this several times before finally getting it perfect. Next, it's time for Tate from MedEquip to come and do his

If you have been to my blog recently then you are probably well aware that this week is Congenital Heart Defect Awareness Week . And if you read my blog you probably know that I myself have a congenital heart defect. One reason I feel the need to share this information is because there needs to be more awareness about CHD and its impact on the child and on the family. It amazes me that even though 1 in 100 children have CHD, making it the most common birth defect, the awareness isn't as high as some other childhood health issues. It is also amazing to me that when babies are born, most hospitals do not even screen for this defect. Sometimes the baby is sent home, unknowingly having a heart defect and by the time the parent realizes something is wrong, it is too late and the baby dies. This is tragic considering that the deaths of these babies could have been prevented by running a few simple tests. I consider myself to be very blessed in these regards because even though my hea