New slant board for Cole - What a difference!

Just a few quick updates for those of you who read the blog and don't see it on Facebook.  We had the orthotists heat and stretch Reagan's brace.  He also added a large pad inside to reduce the rubbing.  Night one she still went to bed with tears but SLEPT THROUGH THE NIGHT!  It was SO nice...for both of us.  Unfortunately, every night since she's woken up again irritated (sometimes uncomfortable or itching).  I've decided with the short week next week we're going to try to see if time will help adjust to the brace.  And with several days at home, we may do some daytime work with the brace so she can get a good night's sleep.  We will go back to see the orthotist after the holidays if necessary.  I'm hoping we get some insight when we see the Physiatrist on December 1st, however.

I wanted to share a quick poem I wrote one night after putting Reagan to bed.  We had just read a Dr. Seuss book so he was on my mind as I thought about Reagan struggling to fall asleep.

"One sock, two sock, pink sock, blue sock. Tall sock, short sock, half sock, whole sock. No sock too. I will throw this brace at you. No, no, this brace will not do. I don't want this brace and I do not want you. 

On brace, off brace, red spot, hot spot. Eight days now, and I say that's enough. I do not want this brace, it just will not do. I will cry each night I say. Until you make this brace go away. I will wake you one time, two times, four. You will not sleep any more. Not if I have to sleep this way.

What do you say? This brace must stay? Oh what will I do? I do not like this brace and I do not like you. You say you love me, yes you do. But why do you make me hurt this way? I just want it all to go away...

You will wear this brace I say, because you need to, it's the way. You will wear it, yes that's true. Even though you don't want to. You will wear it, yes you will. Because you know I have faith in you..."

In other news, Cole has a new slant board that he's using at school.  I can't tell you how much I appreciate our new TVI (Teacher of the Visually Impaired).  It is amazing to look at these two pictures and see what a difference such a small adaptation can make for Cole.  I am constantly concerned about back pain since he is always leaning over books or art projects. Although he has been using a 3-ring binder to lift content, it wasn't large enough for art projects and wasn't able to be as high as this one.  As you can see in these pictures, in the top picture his back and neck are bent to lean over the book to count the apples on the character's head in the Dr. Seuss book.  In the second picture, he is still able to count the apples without having to lean toward the content.  This fancy new clipboard has three settings so he can also use it to write.  Anyone want to guess how much a plastic stand like this costs?  Yup, $200.  Wow, I'm in the wrong business.  The good news is that he will be able to take this to Kindergarten with him since it was purchased for him, not for the classroom.  I'm super excited about this new tool for Cole!

I'm also excited to share that Cole was on the front page of the Loudoun County Public Schools webpage today!  Cole was asked to come to his friend Sammy Child's Home Economics class (now called Family and Consumer Sciences).  She was inspired by our visit to Ronald McDonald House over the summer and used that inspiration to propose a class project to make blankets for Ronald McDonald House.  She invited us to join her to present the blankets to a representative from Ronald McDonald House and share what receiving a blanket meant to us.  What a great cause and a special young lady who is helping others! For the full article go to www.lcps.org or click on the image below to make it larger and read it in full.

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!