Here’s another quick update.
We have the upcoming trip to Mayo on the 20th of this month where we will find out where we stand. The current status of AJ is not as bright as we would like it to be, but here’s what we’re seeing:
AJ has virtually no independent motor skills, and is extremely quiet as her speech has been limited to simple few word phrases on a good day, and most of the time quiet one word answers or repetitions of words you say around her. She does good with assisted walking on a good day, but the new normal is having a hard time sitting upright, and needing a wheelchair to move around. There is a decent amount of hair loss from the newest radiation treatment, as expected, but there is a side effect from the steroid medicine of super amazingly easy brusing anywhere. We’re talking anything pressure (like leaning on a counter or jeans bunching up behind the legs when sitting – it happens with toddlers aged 2-5 for sure as well, with their little pointy knees and elbows). It’s super bad looking and to be honest, as her husband I feel like crap when I see all of it when there’s nothing I can do to stop it or help fix it, but we’ve been told a few times from the wonderful staff at Altru’s cancer center that this can be a very normal effect of steroid use in this situation.
On a good note, the benefit held previously as well as all the help since is paying off in the form of a few very helpful assistant devices like a ‘transfer bench’ for the shower (seriously, sit down and slide on over the edge of the tub, then sit and shower!). Our bathroom has transformed in to a handle-city, with handles available wherever you move around 🙂
We would really like to thank everyone for all the awesome and amazing tasting meals, and although we’ve been spoiled by some great tasting food, there will be quite a bit of work trying to beat the super amazing Cheeseburger Soup made by Sean (sorry if misspelled, horrible with names).