Tomorrow starts Limb Loss and Limb Difference Awareness Month. I think I only became aware of the month of awareness last year. There is a world of limb differences beyond fibular hemimelia but I would say that although fh is the most common long bone defect, it is far from common or commonly known about.
Today was a good day. Steven went back to work so I was on my own which is not such a big deal. A wonderful friend visited and brought us some awesome soup to have tomorrow night and other goodies. Just to sit and visit with her was perfect. Another fabulous friend and her son brought us dinner for tonight and their kindness just touched my heart. These visits and meals make us feel so cared for. Steven is also working later this week so he can take the kids to the bus in the morning. Normally after school one of us would cook while the other does homework with the kids. It’s a good system and I know we’ve been lucky to have us both home in the afternoons. It’s just hard to imagine adding all the leg business in to the agenda with less hands on deck at our busiest time of day. The dinners this week from friends are taking the evening stress down a million notches. After this week things should simplify some.
So while is was most certainly a good day I am exhausted and so is Nick. He started doing school work and now we have the new stretches he got from PT yesterday. It’s all doable but it’s the timing of it all that felt rough. For me. I am sure the doing felt rough for Nicholas. I have to time Nick’s 3 lengthenings 4-5 hours apart at least. I have to time his pain medicine doses 4-6 hours apart. I have to time his 3 sets of vitamins several hours apart and with food. I also have to time the pain medicine to work well for his physical therapy (which I did today for the firs time on my own in years). Even without pin care I really am keeping busy.
To do all this I use my smart phone for some things. I also use my dry erase calendar, paper, pencil and pen. Literally all of those in all different ways. I know there is a simpler way but for today this worked. We will eventually develop a routine which will simplify everything. We are just not there yet.
Speaking of time, it is time for me to get back to my school work. I hope to post some fun stuff this month for Limb difference awareness. Hopefully more videos from Nick and maybe some guest posts too!