Quick pic: evening lights

Hard to believe that it's less than a week til Christmas.  I don't care for the stress and the shopping and the lists, but I like the lights. A lot.

Quick pic: pool therapy

Braska really is doing well with her aqua PT sessions each week.  We are seeing more obvious progress through these than in any of her other therapies right now, and she loves going! Thankful we got hooked up with this program.

Quick pic: the iPad

We have been given an iPad that's is no longer needed due to an upgrade. So we are going to be setting it up for Braska to hopefully take to school and utilize for educational apps for subjects that the appeal of visual helps and technology would make more interesting. For now, we are learning from the beginning...including using the camera for selfies...

Quick pic: Braska's spot

I'm going to try to do better about posting. Facebook,  Instagram and Twitter have of course made the quick photo and comment easy. I have a Blogger app so I'm gonna try to share some here more often. For those of you who are blog followers. All 3 of you. :)

For starters, Braska's enjoying Saturday morning in her favorite spot on the couch. So nice to just be home...  Hope you all had a nice holiday!

Joy and Peace

Just have to share this Kinlee moment….Our evening routine is referred to as "toilet, teeth, book, and bed." M covers most of the 1st three parts lately because I've been editing so often in the evening. But by request of the girls, I come in for prayers before they are tucked the last time. Kinlee has very recently started to begin praying before I start, which is so cool.  My favorite line is usually when she says, “Please help my family to learn, grown, and strive.” :)

Two little things to note before I continue…  Today the girls were with me for a studio photo shoot. I picked up some boxy letters, J, O, Y, to use for the Christmas portion of the shoot.  Kinlee liked helping me with the letters.  And earlier this morning, she asked if she could have a temporary tattoo on her upper arm. Someone gave it to her a while back. It says Peace.  So she’s sporting that tonight also.

We've been talking about the things going on in Ferguson lately, because she can read the headlines and she is very keen to conversations that happen around her, even in public settings. And since we live about 15 minutes from there, it’s a topic everywhere. Tonight she began to pray, and after being thankful for things like her family and her house to keep her safe, she said, “Please be with the people in Ferguson. Help them have what we made with the letters and what’s on my tattoo… joy and peace.”  I just had to stand there in the dark, holding the hands of my girls, and smile. Makes a mom proud. And I agree with her. Don’t even begin to think that anything gets by her. She is just so insightful…….  Thank you, Lord. Amen.

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.

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!