Beanie's Blog: Hope!

I can't believe that I was sitting here crying three weeks ago because of all of the things that Selene couldn't do. Today, I'm stunned at everything she can. She's begging to go outside and ride her bike, she climbs up and down off of our high stools, hasn't asked for the high chair in two weeks, jumps, runs, smiles, laughs, it's incredible. My mom was here this past week and swears she saw improvements from her first day to the last.

Selene is always happy but I've seen legit joy in her in the past week or two and its given me great hope for the coming months. Therapy is going great, both OT and PT have discussed the possibility of being done at the end of November, though we'll have to discuss that plan with the oncology team. She still really needs to work on the strength in her hands and the ability to open her hand into a full extension on her own (we can massage and stretch her hand into full extension now which is huge!). We also need to work on the flexibility of her ankles but her hips and knees have really improved.

We have been decreasing the steroids and are eager for them to be done. They've been causing havoc with her veins. They stuck her three times for an IV and ultimately never got it. She ended up having to take her prophylactic antibiotic via nebulizer at her last appointment, she wasn't thrilled with it at first but I would think she'd rather that than being tethered to an IV. We'll see what happens at our next appointment in October!