New AFO and a New Low Vision Specialist

This week brought with it two appointments.  First, we went to pick up Reagan's new AFO from Nascent Orthotics on  Monday.  Unlike her last brace, this one extends all the way to her knee.  And unlike the last one, she will wear this only at night.  Although I thought night wear only was a huge "selling factor" this brace is very hot since it has solid plastic up to the knee.  It also has four velcro closure straps.  The goal is to increase the tightness of the velcro each week to decrease the angle of the ankle, therefore stretching the calf into a position that the brain does not currently allow.  We talk about the importance of reducing her tripping and how we want to prevent her from getting hurt but in addition to being hot, the brace makes rolling over in bed tough since it gets caught on the blankets.  Sadly, she's cried every night because it's uncomfortable.  She also gets frustrated that "lefty doesn't work right." The last two nights she has also woken up at 2 and 3am telling me her leg hurts.  The first night I adjusted the tightness of the straps and that helped, but last night we removed the brace and her ankle was slightly red.  I've made an appointment for next week to have them modify the shape around her ankle hoping that will help.  Luckily we don't have to try to find shoes to fit this one and even better, insurance has covered it completely!  Doesn't look like $1,240 does it?

There are so many decisions over the last 6 years that I have doubted whether we are choosing the right path.  This is definitely one of those...but I try to remind myself that everything takes time to adjust.  And as with other parenting challenges sure to come, the popular decision isn't necessarily the right one.  But there is nothing more heartbreaking than to cuddle her through the tears wanting lefty to work right so we don't have to travel this journey.

This week also included getting a second opinion from Dr. Peyam Mojallal at Acuity Vision Care, a low vision specialist.  Cole is doing SO much better making it through long, exhausting appointments, but it's still very difficult getting a good gauge of his visual acuity. It was a productive appointment, but still disheartening watching him try to read the letters and realizing that he just can't.  He was unable to see any of the letters with his right eye regardless of size or distance to his eye.  He struggled with the left but he was able to see the letters.  The doctor also tested the use of two different magnifiers.  Unfortunately neither worked well since Cole tends to bring content closer to him and these need to remain on the reading material. Although we could retrain the behavior, he will then need to lean over the content which will not be good for his posture and could cause back pain over time.

He also tested a "loupe" which clips onto the glasses.  It works much like the magnifiers jewelers use.  When we clipped this onto his glasses and gave him something to read he said, "Wow, these words are huge!  This thing is cool.  I wish I had one of these."  We have decided to make the request to Loudoun County to purchase one and see if it helps him.  It will be something he could clip onto his glasses when he needs to read something that is small.

Unfortunately this will not be a good solution for doing school worksheets since he can't write on them while he's looking at them.  So the doctor will also be providing some suggestions for CCTVs and we plan to submit a request to Loudoun County to purchase one.  The one we saw at GMU is still high on our list of options.  Not only is the price for the ReadDesk very reasonable (only $800) it runs off USB so finding power in the classroom will not be as challenging since it could run off a laptop. It can scan, read, magnify, save and listen to any printed material. Although I'm discouraged that we need to move in this direction, I'm so thankful for a vision teacher who is proactively researching and advocating for our son.

I'm feeling very lucky that we only have one Nascott appointment (to adjust the brace) and a physiatry appointment to talk about using the brace and then we will be done for the year!  We are all getting very excited about celebrating the upcoming holidays!  Unfortunately Reagan told me recently that Santa is just a man in a costume.  So we've already visited the "real Santa" to give a tug on the beard and verify Santa really does exist.  We are very excited to carry the tradition and magic for another year!