Some New Information

Ms Victoria took this picture of Tessa the other day and it took on new meaning last night. We had our regular physical therapy at the house and then we also ended up having time with Deb for vision therapy. With all of the snow and with Tessa being so sick, it has been a while since we've had time with Deb. Her outlook has always been and still is, that Tessa is making great strides with her CVI diagnosis; however, last night she gave us something to bring up at Tessa's appointment with Dr. Trigler (her Ophthalmologist) this coming Wednesday. I have been noticing this with Tessa for some time now, but wasn't sure what to make of it or whether or not to be concerned. Tessa's right eye is pulling in nasally and we need to know what is causing it and what should happen next. Deb explained that there are a couple of methods the doctor might want to try, like a patching schedule or prescription glasses. The patching schedule would just mean using a patch over Tessa's left eye to force her to use her right eye and build up the muscles in her right eye. For some reason, the muscle strengths between her two eyes are significantly different and when that happens and continues to happen over a long period of time there is risk for permanent damage. We have been saying all along that Tessa's vision is her greatest strength and the source of much of her joy and happiness. It is stressful to think of anything hindering that for her. Deb also wanted to let us know that very often they go ahead and perform muscle surgery to help correct the uneven muscle strength between her eyes. This is the first we've heard of this, so I haven't even had a chance to research this type of procedure. And like most everything else, we will likely just wait until Wednesday and see what the doctor recommends before we get too worked up about anything. It is so important to get this corrected for Tessa for so many reasons. If surgery is the most immediate and most effective approach...we will definitely prepare for that to be one of our next steps.

Last night, we did spend time filling out the order requests for Tessa's new bath chair (options were red or blue...so red it is) and for her stander! Her stander comes in Midnight Purple ~ obviously Mommy is super excited about that! We will also be ordering Cascade DAFO's - JumpStart Kangaroos. Here's a brief description on their website: Most DAFO patients lack some degree of voluntary control of the foot and/or ankle. Simply put, a DAFO brace (sometimes called an orthosis or splint) provides support to help a patient maintain a foot/ankle position, encourage mobility, and ultimately, improve stability and success. http://www.dafo.com/products/jumpstart-kangaroo/

The picture below is similar to what Tessa will be getting, the one pictured is actually a custom order...but her's will still have pink on it ~ yay. The outer shell and the straps on Tessa's will both be pink, the inner liner (or the piece that comes up the tallest) will just be white. These will be very useful in Tessa's stander. She has a tendency to kind of curve her feet inward and also to stay up on her toes, so these supports will help her be appropriately weight bearing on both of her feet!

We've been busy busy and I still have videos that I want to share from last weeks' physical therapy session....just haven't had the time to get them uploaded. They are of Tessa using and experimenting with Switches and Switch Adapted Toys. I think I mentioned before that this realm of adaptive technology is to help Tessa learn cause and effect to help her communicate with us between now and when she can get her cochlear implants and begin to learn speech and language. Last week was a lot of fun...Tessa was a regular pro at using the switches which pretty much proved to us that she gets 'cause and effect'! Switches and Switch Toys are not covered under "medical necessity" and they are very expensive. After talking it over, Darin and I almost think we'd rather just go ahead and get Tessa an iPad. Melody told us about a new app for the iPad called "Verbal Victor". The app would help Tessa communicate by allowing her to touch the screen and corresponding button which will trigger the device to play a recording that will help her vocalize what she wants to communicate. When reading up on it, it explains how some individuals feel more comfortable using a familiar voice, therefore parents, friends, and caregivers can record phrases suitable for the user. You also upload real pictures for her to choose from; so if she wants Mommy or Daddy, we can upload pictures of us and then voice record "Mommy" and "Daddy" and those would be options for her to choose from. We would also be able to upload a picture of one of her spoons and she could choose it for if she's hungry and a picture of her bottle for if she wants milk. The app is supposed to be able to allow us to present as few as two options at a time. So the screen could just have two images and Tessa will learn how to choose from those images what she wants and at the same time hear a voice recording of what it is she is choosing. As she gets better and better about using her hands we would be able to increase her number of options on the screen for her to choose from. All that to say I guess....iPad here we come :)

So that's a bit of what's been going on in the Bynum world over the last week.

~Whitney