Faith's Mom's Blog

Oh boy! These last two mornings have been tough ones as far as Faith getting ready for school. Everyone seems sort of perplexed by her behavior. She cries and screams and throws a fit as soon as I start getting her dressed for school. She tells me repeatedly to "Stop it!" I seriously wonder what the neighbors think during all of this. At some point she does calm down but why does she even do it in the first place? Does she seriously think that by throwing a fit we're not going to send her to school? Both her morning and afternoon aides say that when she is in the classroom she is a little tense and her arms are bent up stiff like she can't totally relax. I'm hoping this will get better as she gets more used to her new classroom. Despite her bits of anxiety, her feedings are going well at school for which I am very grateful. Last year we kept having episodes of gagging and throwing up and we ended up seeing a nutritionist to see if we needed to make any adjustmen

Have you ever experienced a time in your life when you were flying high full of joy one day then the next something comes along that completely bursts your bubble and you end up feeling totally deflated? This is what I call a joy buster. I had one of these real joy buster moments this past Sunday. I wanted to take our van somewhere so I could practice getting Faith in and out of it and to make sure I could do her tie-downs correctly. We were in the Healing Rooms parking lot when I got her out, showed her they were closed (she really wanted to go that day) and then upon getting back in the van discovered it wouldn't start. Thankfully, I had a cell phone with me and was able to call Rob to come and get us. On Monday we called VMI, the company who put in the electrical system to make it accessible. We thought something might have to be reset or there was a safety feature we didn't know about. VMI gave us something to try and I was full of hope. But it still wouldn't start.

Ever since finding out Faith was going to be needing some sort of wheelchair for mobility, my husband and I knew that one day we would need an accessible van. Until that time, though, we knew we would have to make-do without one. After Faith outgrew her regular car seat and needed more support, we were able to acquire an adaptive car seat called the Special Tomato using funds from GABR . Faith's first wheelchair was a pediatric wheelchair called a Kid Cart - which came apart and easily fit into the trunk of our car. But after outgrowing that, her chair became much bigger and much heavier as well. Thankfully, we were able to take the seating system off of the base and then put the seating system in the passenger seat of our car with the base in the trunk. All of this required lots of lifting. Here's how that process went: I knew after her chair was upgraded with a new back and seat, not to mention the fact that Faith just wouldn't stop getting taller, we were gettin

Finally last week, Faith got her hair cut! Her thick hair was getting too long and unmanageable so I had Julie cut it pretty short - perfect timing for the warmer summer months. It is really cute and she has gotten lots of compliments. We are also finally looking at purchasing an accessible van. Our disability case manager e-mailed us some specs of a van that is here in Bismarck. On Sunday we went to look at it and we think it would work well for us. It does have some door issues but we think we'll be able to work around them. It also has an in-floor ramp that can come out and go back in either automatically or manually. We rolled Faith into the van and she was pretty excited about it! Yesterday Faith had her class field trip to the zoo. Even though it rained for about 20 minutes, we still had lots of fun and were thankful the weather was good for the most part. Since I drove Faith out there, we were able to stay a little longer while her classmates headed back to school. I