I originally took a step away from blogging because I wanted to spend some quality time with the family over the holidays, but it's turned into such a nice break that I've promised myself to spend much less time on the internet in 2014; I even deleted the FB app from my phone.
Bailey's doing great, she's making great progress on all of her OT goals, she's tolerated the increase in her meds well & she's building a tremendous vocabulary, which is something a lot of OMS kids really struggle with, so we're super blessed in that regard. She's been getting her monthly IVIG infusion at home & that's going great, it's nice to be a little more relaxed, even though I still have to chase her around with the IV pole, at least it's at home.
The week before last was the busiest week we've had in a while, we had a CT Scan Monday, IVIG Wednesday & OT Thursday. The CT scan results showed that everything is still stable. There is no new Neuroblastoma, & the calcified lymph nodes that have always been there are obviously still there, but they haven't changed. The most exciting thing to me though was that we were able to do the scan without sedation!! Instead of our normal morning appointment, they were able to work with us & schedule it at night so I could just put her to bed as usual & then scan once she was asleep. She did fall asleep before the scan but she woke up once the machine started moving, she was still very cooperative though & we were able to get the images.
I'll do my best to update every few weeks at the least & as always, we welcome any prayers for Bailey's continued health & sanity for us all.
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