Better Days

Well, we made it through this week!  Today has been the first day that I haven't been carrying a handful of Kleenex around! I woke up not dreading the day but embracing it!  We seemed to come up with a workable schedule for Kourtney! She will spend the morning at school, go the gym and then come home at lunch where she will work on much needed Physio as well as take a Social Studies class online!

Can you see me now?

The reason we have chosen to keep her in school is so she has a reason to get out of bed in the mornings and have a place to be! The other day when everyone else was at school and Kourtney was home, she begged to stay in bed longer . . . it was 8:40!  It would have been so easy for me to give into her because it is so much easier to give in than to fight!  So now she has to roll out of bed early and attend class knowing she can have a rest when she gets home!

We have also decided to do more frequent dressing changes. We have found that  her skin is looking a lot drier and better after doing them daily. The skin gets macerated from sitting in soggy dressings, plus she starts her day feeling clean. As well as her reduced school schedule, she is able to do more extracurricular activities. Tuesday - Wednesday she will have something going on so it is difficult to do dressings changes in the evening!

I sometimes think I should call this blog my blog because I realize it is more about what chronic illness can do to the family. Putting aside the name of the blog, my goal is to be vulnerable and allow you to see the struggle. But through the struggles I hope you see the Hope we have! I don't know if we will ever see Kourtney's disease get better or cured, however, I have a feeling that one day Kourtney will be sitting very close to the right hand of Jesus for eternity - and for that - it will be worth it all!!!