10-5-26 Update, Steven

She has been coming off medications, which has sometimes brought her less agitation in her stomach, but over the past few weeks, she was back to being under a lot of strain in her digestive track again because one of the drugs she came off of has a side effect of diarrhea…, so again, one step forward, one step back.

Over the last almost 12 months now, her digestive system has been her downfall, especially after she stopped neuro-storming about 5 months ago.

On the positive side, she IS coming off medications and longer term, that is certainly a good thing.  I think she was up to maybe 12-14 medications at what point, so now she’s maybe down to about 7, so we’re definitely going in the right direction.  It’s hard to stay positive when your baby girl still can’t communicate beyond blinking, show emotion beyond pain or sadness, and cannot move on her own after almost a year, but we’re doing our best to stay focused on God.

Another positive is that Isobel has been picking up her head more often and can now hold up her head for up to 90 seconds at a time and has been making some verbal noise occasionally as if she is trying to talk as well.  She has also been looking intently around the room and at us occasionally, showing that she is more engaged and aware more frequently as well.  She still only nods very slightly occasionally, but has been blinking more often and even shrugged her shoulders a few times when Delia asked her questions once, so have seen some improvements in her behavior, but it’s not on command yet and it is only sporadic, but we’re grateful.

Another positive is that there are now three teams of therapy coming in to help her multiple days a week, one through the school/town, one through insurance, and one through a group called Horizons, so Isobel gets about 15-20 hours of therapy a week now.  We also have a nurse coming in for 20 hours a week, but most of her hours overlap with therapy, so Delia and I fill in the rest of the time along with help from our kids and some dear friends when available.  I obviously work full time and have been spending as much time as possible working on the Farmers Cow project, but with Isobel being another full-time Job for me, it’s been difficult while Delia obviously struggles as well.

However, we’re grateful she’s home and we can be with her as much as we are while also also doing our best to take care of our own health (physical, mental, and spiritual) as best we can too.

Thank you so much for walking with Isobel and us throughout this terribly difficult time.  We have leaned on you and your prayers more than you know. 

Love you, God bless!