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!

Day of Reflection and a visit to the Endocrinologist - FINALLY!

Wow, it was a busy day!  After Reagan left for school Cole and I went to the gym as we do every day
except Thursday (because I volunteer in Reagan's class).  I had 60 minutes of "quiet" time on the elliptical to think about my day five years ago today.  So after the gym I told Cole we should go to Starbuck's and remember Kendall by getting cake pops!  We've never bought them before so it was a fun treat and a good way to make new, happy memories.

I bought the recyclable butterfly coffee cup and after Cole finished his chocolate pop he asked when we were taking Kendall her pink one.  Sigh. When I told him we couldn't go to Heaven he said that was ok, but told me I couldn't eat it because that would make Kendall sad.  I tried to explain that we don't take our bodies to Heaven, that's we only have a spirit, but I honestly wasn't quite ready for that conversation.  When I started to cry at the thought of losing her, he said, "it's ok mom, she's in Heaven.  You don't need to be sad."

After Starbucks it was time to put Cole on the bus.  The house was desperately quiet and because I'm between contracts I had no work and didn't need to get the kids from school until 1pm (for the endo appointment).  I decided to head to Home Depot to pick up bulbs to plant in memory of Kendall.  The year she died my mom and dad helped me plant 200 Daffodils in our back woods.  Every Spring when they bloom it gives me such a warm feeling to think about her.  Unfortunately a pesky squirrel decided to steal a lot of my bulbs over the last few years so I decided it's time to add more (285 to be exact).

I want to share an interesting reflection with you as I was planting. Bear with me on the long winded build up…As I started digging holes my initial feelings were filled with joy - seeing the packaging and thinking about how beautiful these would look in the Spring. As I dug, the tears started rolling down my cheeks as I wished I didn't have to plant bulbs and wishing Kendall was part of our family here on Earth. I found myself hacking violently at the chunks of clay and the annoying grubs but realized it didn't really make me feel any better. It just fueled my anger. As I would I get another bag of bulbs I would see the flowers and remember that planting bulbs would bring Spring flowers. I felt joy again. And I marveled at how much this roller coaster of feelings reminded me of my journey through grief and healing. Good days. Bad days. Angry days. Sad days. And days that I just feel numb. Then I started thinking about all of my friends who have lost a twin (there are 31 women in my NOVA Multiples Loss Group). Then I found my energy renewed as I felt the need to plant bulbs for all of these angels. Then I looked closer at the package and saw the diagram of the bulb below ground and the flower rising above. Then it dawned on me…these bulbs are like our angels who have been buried and the flowers that will bloom in Spring are like our twin survivors. Beneath every flower is a bulb that is helping it grow and giving it life. Without it, there would be no flower.  For each bulb I planted I spoke the name of one of the angels I know who left this Earth too early. It was amazing how planting these bulbs helped me see the beauty that is to come as long as I am patient enough to wait until Spring.  I look forward to seeing all these flowers when they bloom.  And hopefully they will all make it through the winter!  It's a wonderful analogy that somehow spoke to me today...

After getting two thirds of the bulbs planted I had to get changed to pick up the kids early from school.  We headed East, fought stopped traffic on route 7 and did a U-Turn to take the toll road.  Luckily we were only 5 minutes late which was pretty luck given we sat in stopped traffic in Sterling for 20 minutes.  Our appointment with Dr. Mehra, Endocrinologist, went very well.  We discussed the symptoms Reagan is having, the results of the bone age test (which was normal) and the blood work (which was normal) and she said she isn't overly concerned.  She said her symptoms are considered Premature Adrenarche not Precocious Puberty (not uncommon amongst children with Cerebral Palsy).  Apparently that's a good thing.  Phew! She gave me a list of symptoms that would cause her concern and said unless we see those that we don't need any followup.  We have been waiting to see this doctor for 5 months so we are VERY happy to have this one checked off our list!  

We made it back to Sterling in time for Reagan to go to CCD (religious ed class), Cole to get to Tae Kwon Do, back to pick up Reagan, eat a quick dinner and get her to Tae Kwon Do class and then all home to bed.  We will wrap up our week of appointments with flu shots tomorrow.  Unfortunately Reagan's epilepsy/cerebral palsy requires her to get the shot instead of the mist so I get it too so she doesn't feel left out :-)  Other than two follow-up appointments for me in the next two weeks, we have no more doctor's appointments until the 19th and 21st!  Yahoo - almost like a vacation!  

On a separate note, I promised to start sharing quotes from the kids that make me laugh.  My favorite today was the first thing Cole said when he woke up today.  "Mom, am I still 5?"  Love that kid...

Quick updates ~ GI, Cole's Birthday, Pediatrician & Back to the Orthotist

Just a couple quick updates since I have so many this week.  We met with Dr. Honeybaum the GI last Friday to follow up on Cole's constipation issues and she is still not happy with his output.  We have increased his Mirilax to 1.5 caps per day and if he goes one day without a stool then we will double the dose.  Hopefully the increase will work - last thing I want is for him to have trouble making it to the bathroom, espeically at school.  She also wants us considering a cleanse every other month.  YIKES!  Remember that line-up of cups from the hotel?  Yup.  Luckily we won't go back to the GI a few months as long as everything continues moving along.

In addition to doctor's appointments we reached the big 5 year milestone for the twin's birthday.  Although it's always a bittersweet time of year, we had a very nice celebration for Cole's birthday over the weekend and had my parent's over to celebrate on Sunday (Johnny's parents are out of town).  He had a lot of fun with his friends and cousins at the fire station where Johnny and I volunteer.  We had pizza and cake - his two favorite foods!  We also had rescue obstacles setup and the kids got to play on the real fire trucks.

We have been talking about a fire house birthday for years, so it was fun to finally host it.  Cole chose a Heatwave Rescue Bot Transformer theme and they had a lot of fun acting out the rescues with their pretend fire trucks including a parachute rescue!  One thing I recognized early is that the years of hosting birthday parties is actually very short, so we are enjoying it while it lasts!

In addition to having a birthday, Cole also had his 5 year check-up.  Luckily there were no shots because I let him get him get the flu mist instead of the shot this year.  He was very excited about that!  Overall his appointment went well.  He has grown over 3" this year!  He is finally at the 25th percentile
and we are very happy to see an increase in his growth rate above where he has been since birth.  Hopefully this trend will continue!  And hopefully no more pediatrician until his 6 year check up!

It really is amazing when you look at how far he has come!  I am so proud of how hard he has worked to get where he is today.  He will always live with the affects of prematurity, but he doesn't know life any other way.  I can't wait to see where the next 5 years takes him!  So proud of him.  And I know his special angel in Heaven is dancing on her birthday and celebrating with all the amazing people there.  It is difficult wondering what she would be like, and how different our family would be, but one day we will be reunited again.  Until then, we will focus on our successes, take life one day at a time, and look forward to the years head.

We also had an appointment yesterday at Nascott Orthotics and Prosthetics.  Unfortunately with Reagan's increased tightness in her left leg we've decided to have her fitted for a new orthotic.  The good news is that we're going to try using it only at home and see if we can see some improvement in her gait and decrease in the falls.  If so, we hope to only have this night brace.  If we don't see improvement then we may need to put her back in something during the day.  As you may remember, the day brace they are recommending for daytime is a hinged solution so it's VERY large and finding shoes will be very challenging because the shoe has to be wide and go up in size to accommodate the width of the hinge.  Because she only wears it on one foot she only increases one shoe.  Any more than one size increase and the shoes look vastly different and it looks funny.  

Reagan was a really good sport about the casting although I'm not sure how long that will last when she finds out she needs to wear it to bed.  I can't image that will be comfortable.  The goal will be to slowly increase the angle of her foot to get it into less than 90 degrees.  Imagine standing flat footed and raising your foot off the ground so only your heel is on the ground.  She is unable to do this at all.  Do you have any idea how much your toes are involved in wearing flip flops?  This is also something very difficult for Reagan because she can't wiggle her left toes.  And although this doesn't sound like a big deal, the tightness increases over time when the muscle isn't used correctly.  Ultimately it is causing her to trip more over her toe (because she doesn't lift it when she's walking/running).  You will notice in the picture that Gary used the saw to take off the cast.  This was a first for Reagan and she did great!

It's off to the endocrinologist today for the much anticipated appointment that we made 5 months ago.  Prayers for an anticlimactic appointment where she says, "that's no big deal...come back in a year and we'll see if anything has changed."  Although I'm preparing for, "we need to do blood work, follow up in 3 months and she needs to start taking medication to control this."  I would LOVE to be wrong!