GMU Assistive Technology, Ophthalmology and Neurology EEG plan

It has been a few weeks since my last post and I have a couple updates.  First, I wanted to share a picture from our annual lantern lighting for Kendall.  It's amazing to me that it has been five years!  Although it is always a somber event for us, it is a good time of reflection and the kids love riding the ATVs, lighting a camp fire, eating a picnic dinner, lighting the lantern and this year we layed on the ground and talked about the stars and planets.  I felt very blessed Cole was able to see them - often he struggles in Sterling because the sky isn't as dark and the stars aren't as bright.  It's always amazing how beautiful the sky is at my

parent's house.

We had a great visit to George Mason University's Assistive Technologies Department this week.  I never really thought about the transition to college, but it's important for students who are visually impaired to have a point of contact to help them access their education like "sighted" students.  There are many challenges for visually impaired students - college is not just finding their classes and listening to lecture, it's also performing literature searches or completing labs using proprietary software.  All software companies are required to be 508 compliant so that students with vision or hearing impairment can access them.  This legislation came about with Section 508 of the Rehabilitation Act that requires all web content to be accessible even if you are visual or hearing impaired.  I have developed training that is required to meet these standards and it's critical for those who need the accommodation.  However, many students going to college use magnification software that is not necessarily compatible with the proprietary software that colleges use (most test with Jaws which is losing popularity).  So when students try to do a literature search with their magnification software it doesn't work properly since the testing the software company used may be different than the one the students are using.  For example, some software runs better on Firefox than Safari or Internet Explorer.

The Assistive Technologies Department at GMU not only supports these students in finding solutions that will work for them to access their education, but they also work with the professors who need helping learning how to adapt their material.  We learned a lot about what features are available in software and what hardware options are used for magnification. We were also able to see the magnification software and how it works and we were able to see a slick new CCTV.  It is portable and powers directly from a computer via USB so it doesn't need a power source.  This is important if we're talking about Cole using it in a classroom since outlets are not easily available.   This CCTV has a lot of features that could benefit Cole for his schoolwork.  The CCTV is called a ReadDesk and I would love to see the school purchase something like this for him.  Time will tell how hard it is for us to get something like this approved.  As far as magnification software, there are free software options that are not as feature rich as the ones that require a license.  Unfortunately getting justification for the license is difficult since there are free options.  Again, time will tell whether we are able to get the support we need.

This week we also had a visit with the Ophthalmologist, Dr. Jeffries for Cole's 6 month follow up.  I had a lot of questions since we hadn't seen her since visiting the National Federation of the Blind, George Mason University AT Department or the Low Vision Specialist.  I told her about his ongoing head aches and asked if his vision issues could cause the headaches.  She said no.  I also asked about Braille and she said she does not think it is necessary right now - luckily she is in agreement with Cole's TVI (Teacher of the Visually Impaired) so  we will hold off on learning Braille at this time and discuss it again in a year. There are several reasons for this decision: 1) learning Braille requires strong fingers to press the note machine and it will be very difficult for him physically 2) his eye sight is not degenerative so he won't lose what he has now 3) he is able to see as long as the text is enlarged so the CCTV in combination with a magnification software will help significantly 4) the optho doesn't think he will experience eye strain which is why NFB and DBVI (Dept of the Blind and Visually Impaired) originally said he should learn braille.  Overall she said he looks good and she'd like to see us back in 6 months.

In addition to opthalmology we also visited the neurologist, Stephanie Stavish this week.  I brought her my extensive spreadsheet tracking his head aches and she said that unfortunately there are no tests to determine what is causing them.  She said the primary cause in kids is either lack of sleep or dehydration.  She wants him drinking 40 oz of water daily.  I'm not sure how we are going to accomplish that, but we are going to try.  We are also trying to get him in bed closer to 7pm to increase his overall sleep.  Other than that she said he looks good and come back in 6 months.  If the headaches continue she recommended we consider putting him on a preventative medication, but we are hoping to avoid that.

The neuro was happy to see that Reagan is doing well, that the endo appointment went well and that we saw progress at Kennedy Krieger over the summer.  Luckily the neuro said Reagan's medication is at the right level for her weight so we don't need to go up again.  When I asked at what weight we would need to increase she said it may depend.  She suggested we repeat the EEG to determine how her seizures look.  She reminded me that Reagan's seizure activity is not focal - it's all over her brain.  If it were localized to the lesion where her surgery occurred then it would be less likely that she would come off medication because it's clear that the seizures are caused by the scar tissue.  Being more generalized, however, it's possible the brain will learn to remap the signals causing issues.  This doesn't seem logical to me since the brain has to remap so many different places….but I don't pretend to really understand synapses remapping. I am not holding my breath, though.  I was very hopeful last time she had the EEG and was crushed to find out that she was having them all over.  We will plan to schedule her EEG for April in order to be able to review the results at our next neurology appointment in 6 months.  This will also be two years from the last one.

Luckily we only have 3 more appointments this year (low vision second opinion, orthotics fitting, physical medicine).  The kids are excited about Halloween and the coming holidays.  We went to costume bingo last night at the kids' school and Cole begged another boy to borrow his mask. he finally looks like the Ironman we've been calling him for years!

To carry tradition, I like to share quotes from the kids.  One day this week Cole woke me in the morning and said, "mom, I don't think God is going to let me into Heaven." Deep conversation for a 5 year old to wake up to right?!  I tell my children that Heaven isn't a given….we need live in God's image to be accepted into Heaven.  I guess he took me very literally.  I told him that he is a good boy and that I'm sure God is happy with him.  Then he asked where you go if you don't get chosen for Heaven.  Yikes.  We talked about Hell and he wanted to know what it was like there.  Given his anxiety I was cautious with how much detail I shared.  But I ensured him it's not someplace he will want to visit.  He said, "If I'm a good boy and God will accept me in Heaven then why haven't I gone there yet?"  Another confusion that apparently I didn't explain well. But wow, what a thinker he is! I told him it wasn't his time yet after which he of course he asked why it was Kendall's time.  Another tough answer.  I never tell them she died because she was sick because I don't want them to think if they get sick they will die.  So I have historically told them she died because God chose her to come to Heaven and it was her time.  I totally understand his confusion and hopefully he was satisfied with the answers he received.  He is such a sweet boy who is so thoughtful.  I pray that I'm giving him the right guidance to understand this complicated world and after life.  I look forward to starting him in CCD (Catholicism classes) next year so I have support answering all these hard questions!