So I've been posting lately but not on how we are all doing. Over all we are holding our own. Taking everything one day at a time during a very hard time of year for people with neuromuscular diseases. Many people have asked how Ian is doing...over all ok. We have seen small signs of disease progression. He is harder to understand, not in that his voice is softer, more in that he is having a harder time with certain words and letters. The "s" is the main one that comes to mind. Getting the words "side" and "yes" out have become difficult for him. I would say 5 out of 7 days he is taking a nap as well as going to sleep by 9:15 (yup that's early for him). He's also having a hard time with the loss of Joey, we are taking that one day at a time and helping him get through that.
Becca is doing well. Currently, her grades are 5 A's and 2 B's. She just had a math test and was the only one to get an A. So proud of her. Girl scouts is going well. About 3 months ago she started horseback riding, and last week she jumped for the 1st time. She was ecstatic and we couldn't be more proud of how she is doing. She seems to be handling the loss of Joey ok.
As for Brian and I, we are doing ok. That seems to be how I am describing everything, "ok". I guess when you consider everything we go through on a daily basis, we are doing ok. Can't be doing great, afterall, we do have 2 pre-teens in the house, who both have the attitudes. All the while we are slowing watching one of them die...so we are doing ok.
As 2016 approaches, we will continue to do ok and grieve the things we need to as we treasure yesterday, dream of tomorrow but live for today.