Routine

We started music therapy (The Listening Program). We did two sessions last year, and decided to start up again, it's 15 minutes twice a day, every day. Chloe likes it. (for the most part!) Here she is doing her nighttime session....


Chloe gets her tummy time on the Wingbo swing at least twice a day. (This is what her hair looks like right after a bath, curly and crazy!)....


We also do quite a few stretches, applying the Masgutova Method. These are supposed to help her reflexes mature, and she seems to like it, so that's why we do it!....



We're also working on decision-making and hoping to improve her fine motor skills using the touch screen. We love this thing!....


Her main form of exercise right now is swimming. (Sorry, no pictures. I keep both hands on her at all time while we're in there, so it just hasn't happened yet. Which is a shame, because she has some dang cute swimming suits!) We've been going every day, and she does so amazing! If only she could feel weightless everywhere she went, then she'd rule the world with her physical skillz! Seriously, she holds her body and head so perfect and moves her little legs like she's running a marathon. I barely support her trunk, she really does most of the work, and I am such a proud mama! These water workouts have really eliminated sleeping problems as well.... she wears herself out and then sleeps like a rock the whole night through, which means I sleep all night too, and this makes me very happy! :O)

We've also been going on walks every day. Here are a couple pictures from today's walk. Isn't she just the sweetest little thing EVER!?!? I love her! We have so much fun together, it's almost ridiculous....



You may notice that traditional physical therapy is decidedly absent from our current routine. We've withdrawn from early intervention services. It is not because I don't love the therapists. It isn't because I'm giving up on Chloe -- not at all. It just feels counter-intuitive and even counter-productive after everything I learned from ABM and the progress I saw Chloe make with that form of therapy. I know that many of your jaws may drop at this news. I'm just following my intuition, though, and I feel extreme peace about this decision.

We're still keeping plenty busy and giving Chloe's body lots of exercise, just in a different way than we used to. We've also got an attorney who has offered his services pro bono to appeal the insurance company's denial of the ABM therapy. I'm not going to hold my breath that the insurance company will ever change its mind, but I'm willing to give it a good fight until Oby finishes school and we can distribute funds on therapy that works. I feel confident about Chloe's ability to progress. It may not come in the timeline that I would hope for, but I believe it will come. If it doesn't happen, of course that's okay, but I do believe that she will one day walk. I don't believe this is a false hope, and anyone who saw her move like she does in the water would believe me. This girl is going places!


I'm also trying to get Chloe to eat more. I've been whipping up some delicious treats in my Ninja, and I think it is getting Chloe more interested in food! She has been getting sufficient nutrition from PediaSure for quite awhile now, just eating small bits of food here and there. But I would like to see her weened from the bottle before she starts preschool in the fall, so I'm digging in my heals and really working with her on eating food. I'm not complaining; lots of kids with her medical repertoire lack swallowing skills completely and are g-tube fed. So her ability to drink the PediaSure is a blessing. I'm just crossing my fingers and saying my prayers for added blessings! I guess time will tell!

My cousin dropped a gift by tonight. She and her husband went to hell and back last year with his medical issues. He far exceeded his expectations, but still suffers a great deal. How is it that people who struggle are also the ones who uplift? I don't know, but they surely uplifted me with the message that was on the plaque they gave us, the same message that has got them through so much....

So true, so true.

I've always hesitated to pray for a "recovery" for Chloe. I've felt like it was improper to ask, and that I should be humble enough to accept the blessing that she is. However, recently I've come to the conclusion that as long as I accept His will, despite my requests, that it is okay to ask. That is also part of our new routine.