Sunday, October 19, 2014

Fall fun

I had a big word-filled post started. But it was heavier and more unhappy than I’d intended when I began. Things are not bad, just frustrating on several levels lately.  So for now, let’s just enjoy some funny photos of Braska and M playing “rake tag” (invented by the girls, they are chased by flying leaves, basically) in the backyard last night.  Don’t worry, Braska was having a blast, though she looks less happy in a couple shots.  They make me laugh, though.


In Braska news…. We were blessed to qualify for another grant situation that is allowing us to get the special feeding chair that was recommended for her. It should be delivered this week.  We received another SPIO compression shirt from the same organization.  We will likely be returning to Connecticut in early 2015 for a stay of a couple of weeks, and then possibly staying for up to a few months after, depending on outcomes after the 2-week intensive.  We’re praying that the best things come to be.  She’s not making much progress currently, but that’s largely because of the pace we have at home, and how little time I have to spend working with her.  I’m trying to reorganize and cut back…again… I appreciate your prayers of wisdom as we make some of these tough choices. 

The good news is that her reports at school regarding behaviors are better.  She has finally been showing them her funny, talkative, sweet self.  At least occasionally.  She had a great visit to the dentist, tolerating a cleaning (sitting up) and even attempting x-rays, though they didn’t turn out usable.  That’s a big improvement, though.

Thanks for being interested enough to keep checking in. Smile

Monday, October 6, 2014

Overdue update

This was a post to facebook, and I apologize that I haven’t kept up well. I summarized last week by telling someone , “I’m drowning in life right now.”  I’ve not been feeling well, and I think it’s just the overwhelmed state of my schedule with three jobs and the kids and volunteering.  I need to reorganize once again….thanks for your prayers and your patience.

Several have asked for an update on things...just all the many things going on with us. I'll try to be brief. (yeah, I saw that chuckle...don't laugh.)

•Braska's school reports have been increasingly disappointing, and we're having trouble determining what the source is.  She's showing behaviors that have not been part of her norm. We're not sure where they're coming from. But we believe much of it  is sensory related, according to the pros we talk with and the team in CT. We're thankful to still have access to Lori up there to coordinate.
•In the midst of the frustration of her school situation, we're encouraged by many things that she's doing SO well, so we're celebrating those.  Things like much-improved sentence structure, appropriate expression of her feelings, and increasing independence in some self-care elements.
•We've arranged for a new aquatic PT situation weekly that looks very promising for B. We're excited (she is especially. she loves "pool therapy.")
•We hope to start sensory-focused OT this week as well.  Her sensory struggles are currently causing her the most problems. So we need to get her some help and ways for us to help her get what she needs, regarding input. (may sound like gibberish if you're unfamiliar with sensory issues. sorry)
•M's car, that has been parked for a while after we found that it needed $1000 in repair was taken to a place on Saturday where we got a less expensive quote, and we were hopeful....unfortunately this morning, we have been told that there's another issue that was missed before, so now it would be $1900 to repair.  Not gonna happen.  We'll be figuring out how to get something soon.
•We've been driving my parents' extra van. Thankful we have that option. But it has another home to get to soon, so we'll be looking for something else.
•We have some big decisions to make about school, our jobs, how to reorient things to be available for what might be some big changes on the horizon if we can't seem to get the help we need for B here. (possible return to CT for an extended period is on the table). We appreciate your continued prayers as we seek to make the right choices for our family.
THANK YOU for being part of our team of encouragers!