Faith's Mom's Blog

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 o...

This week Faith had two appointments. One of them 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 thing which is...

If you read my blog, you probably know that I 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 heart defect (Double Outlet Right Ventricle) was not detected until I was about six months old, I still survived. DORV is a comple...

This has been a tough week with me and Faith both having colds and not feeling so well. Of course, it doesn't help that when Faith isn't feeling well, she just can't sleep. After three nights of not sleeping well, I am pretty much in zombie mode.  Yesterday, we did take Faith to the walk-in clinic, and she was tested for strep, which she doesn't have. The doctor didn't think it was a sinus infection, so I guess we have to wait to see if she gets better. Besides health issues, a good friend of mine lost her oldest brother (oldest of 10) in an accident. He was shoveling snow off of the roof of a barn and he ended up falling through the roof and died as a result. He is survived by his parents, his wife and seven kids, nine siblings and lots of nieces and nephews. My friend and her whole family have been heavy on my heart all week.  In the midst of the tough events of the week, I feel extremely blessed to have my family and many dear friends. I also feel blessed to ...