Since our ACC claim was accepted, we now have another team of specialists to work with Vivian.
So in addition to the Champion Centre team, we now have another group of folks from Astech Assistive Therapy. We haven’t yet met with the Speech & Language Therapist yet, who will help with Vivian’s feeding, but the PT/OT person has come by twice so far. The Champion Centre has been on break since right before Christmas, so it’s nice to get some therapy in while waiting to get back to our weekly appointments there.
Vivian really likes this new therapist, but I think most of all she likes being at home where she is comfortable. It makes me wonder if we should’ve chosen a home based service for her early intervention provider. But we do love the Champion Centre team a lot, and we are happy going each week now that we know what works for Vivian in the car.
I haven’t been home when these new sessions have taken place, since they’ve been on days when I work, but Ben gave me a full run down and the therapist sounds pretty awesome. She almost got Vivian to roll completely over from back to tummy the week before last (when I made the Facebook update about it). Very exciting! She is confident that Vivian will be able to roll both ways eventually, and was quick to point out that it’s not Vivian’s body stopping her from rolling. Vivian isn’t rolling yet because she doesn’t want to roll yet. She will roll from side to side and hang out there, but if you start to roll her over completely, she will stop you if she doesn’t feel like being rolled over.
Ben says that Vivian also was tracking objects visually really well for a brief period during the sessions, which is what made her almost roll over. It’s super puzzling because other times she really doesn’t register anything at all from what we can tell. It’s almost maybe a matter of her not being distracted by anything else? We still have so many unknowns there.
The therapist also showed Ben a new exercise for Vivian’s wrists, to keep them from getting stiff from not being used, and is ordering us a piece of equipment to help Vivian learn to sit up while being supported in her core a bit better, as she is jut not strong enough to use the Bumbo seat we have for her.
On the feeding front, it’s still an uphill battle. She will not eat for me in my arms, and might take about 20ml for Ben in his arms. She will wait till she’s swaddled and in the hammock before eating. And her intake has been down this week, so of course I am worrying about that.
She had an OK week overall, but has been pretty unsettled today and I don’t think she is feeling at all well. Lots of naps and fussing, although today her eating was better today than any other days this week.
We are giving her lactulose daily again after she started struggling a bit with her poo. Poop to that! She is taking most of her medications a lot easier than she used to though, so at least we have that going for us.
Next week we are back to being busy with appointments and therapy sessions. I’ve started using Google Calendar for all of our appointments so Ben and I can know at a glance what is coming up and what days are free for new appointments. Crazy busy, baby!
What’s new in your world this week?