and reaching for things are completely different things, but I am a little worried that working with switches (with her head) may be too much since Emmalin will be working on head and trunk control in the afternoon. I would LOVE for Emmalin to get to work on activating her switches for more consistency and efficiency. It would benefit her for the augmentative communication device that we are close to ordering (because she activates that by left and right candy corn proximity switches), it would help her when she is using her switches to play her games on her iPad, and it would also help her for when she gets to work more with the power wheelchair (because she moves the chair around by proximity switches on her head rest). All of these things will help Emmalin have more of a "voice" and be able to interact more with other people (which is amazing). But as I said, I am wondering if it will be too much for her, so if this is the case, I will ask to see if we can work on building her arm strength up so Emmalin could have more control when reaching for objects. I would hope to also work on holding toys (and other things) in her hands so that maybe Emmalin might realize that it can be fun to use her hands to play with things (and even throw and hit things for that matter - ha). Emmalin has never discovered how her hands can help her interact with everything in a completely different way instead of just being able to look at it or hit it (although I am VERY grateful for what she can do)!
So when we get to the intensive Monday morning, we will see what we end up focusing on. You see, up until just a week ago we were headed to Columbia for just the OT Intensive. At the last minute someone dropped out of the PT Intensive program in October and thats how Emmalin had the opportunity to do it in addition to the OT intensive while we are up there now too. Yes, I am worried about it being too much for Emmalin (doing both intensives at the same time), but that's another reason why I am trying to focus on 2 different things.
In case some of you don't know what all an intensive therapy session entails, it is 3 weeks (actually 4 weeks in our case) of 3 hours of therapy each day, 5 days a week (in a row). Emmalin will actually do the OT in the morning for 2 hours and then the PT in the afternoon for 3 hours (with a 2 hour break between them). The idea is that by having the chance to consistently work on 1 thing the entire time, a person has the chance to possibly gain as much as they would in 6 months within those 3 weeks.
We are hoping that Emmalin will make great strides with her head control while we are here. Any gains will be HUGE and we are SO grateful for this opportunity for her to do the intensives!
I have to say, as excited as I am to go to Columbia, when it has come to getting ready for this trip and packing everything that we are going to need for this trip, I have not been so excited to get all of it packed! I quickly realized that packing for an entire month is COMPLETELY different than any other thing I have ever packed for in the past! Normally it's me packing for a down and back trip to St. Louis to see doctors or a couple nights in St. Louis for some back to back doctor visits, or a hospital stay...but packing for a month...it's been crazy thinking about all of the different things that I need for Emmalin when we are staying some place for that long. You can normally get by with not having a lot of things when it's just for a couple days, but not for a month! We are having to bring her bath chair, a hand held water nozzle for the shower, her IV pole for her feeding tube pump (and feeding supplies), her VEST machine incase she gets sick again (because Emmalin is getting over a cold right now), her suction machine (and all of those supplies), diapers for a month, wipes, a months supply of food (which is all in 8 ounce bottles of liquid - that she has 5 of in a day), all of her therapy equipment, all her medications, her pulse ox, and a whole lot more! My mom gave me the idea of putting it all in those tupperware bins, and I am SO glad that my mom came up with that because it has been by saving grace! I have been able to fit a lot in each bin and even though I have filled up a lot of them, they are all organized and that will make it easier for me once we get to Columbia!
Don't get me wrong, I am in NO WAY complaining about all of the packing, (as I said) we are SO grateful for this opportunity for Emmalin to gain some strength, I just didn't realize how much packing was going to need to take place. Slowly but surely I am getting it all done and one way or another Emmalin and I will be heading to Columbia on Sunday to start this amazing adventure!
I'll be posting updates, pictures, and some videos (hopefully) as we go through each week (so keeping checking back).
God is Good!
Oh.. and the pictures are some of what I took for Emmalin's benefit (we needed updates photos). I hadn't posted them on here yet, and so I decided I might as well with this post.
No comments:
Post a Comment