Taking it day to day

Today I'm enjoying a peaceful Sunday afternoon. Lauren is off with her girlfriends and Jacob and David are shopping for a "real life" basketball hoop for the backyard. Jacob is quite into shooting hoops these days and I don't know who will enjoy the new hoop more - Jacob or David. Taylor is taking a nice nap, so I get the unusual opportunity to update the blog during daylight hours.

Taylor survived her last trip to Children's. David was a great sport and took her for her blood draw and this one was a doozy. They took 5 vials of blood to run the various endocrine tests - the most blood they could actually take from her. She's such a little trooper. Thankfully, several of the tests have already come back normal, but we're still awaiting the conclusive report. We gave Taylor the day off of therapy because after the three shots in her legs the day before and arm pokes required for the blood draw, we felt like she needed a day to recover.

She had several great therapy sessions this week. We're continuing to work on reducing the tone in her arms and what used to take an hour (to see her arms totally relaxed), we can now do in 15-20 minutes. This is great progress. So, now we're starting to work with Taylor on sitting - primarily getting her used to bearing weight on her hands so she can catch herself. We're also returning to tummy time - her least favorite - but also an important step. We're buying her all of these snazzy new toys to help her tolerate the exercise - the latest purchase is a little dish that she lies on and she can spin it around to look at a colorful mat underneath her. She actually just did 5 minutes of tummy time on this new contraption without fussing, so I think it's worth it.

Susan and I had a long chat about the month ahead, and now that Taylor is tolerating therapy better, she wants to increase the session length and add more days. It's so conflicting, because of course we want to do everything we can to help Taylor, but the therapy is tiring for her and time-consuming for the whole family. It will help so much to have Lauren and Jacob in school so they're covered several hours during the week (because we don't like them to go to therapy, we always need two caretakers during this time - 1 for Taylor and 1 for them). David and I are also craving a consistent schedule to plan the rest of our lives around but understand the therapy recommendation will change as Taylor grows. So, we're doing the best we can to do as much as we think is good for Taylor. I was feeling quite overwhelmed the other day and found the perfect verse:

"Your father already knows your needs. He will give you all you need from day to day if you make the Kingdom of God your primary concern." Luke 12:30-31

So, I'm trusting that we will make it day to day and I'm pushing the "not helpful" worries again to the back of my mind.

We had a great appointment Taylor's opthamologist on Friday afternoon. He said she was doing much better tracking objects and he could see a lot of progress. As David says, we'll celebrate every piece of good news.