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Friday, July 23, 2010

Back home from vacation!

I am exhausted!  We are finally home from our 5 day vacation to was fun, maybe too much fun in too few days!  We went to several Arboretum/Gardens, the zoo in Ft.Worth, Ripley's, several uptown/downtown spots(including the spot where JFK was assassinated), and we ate many wonderful meals and the finest restaurants!  Nevertheless, we are glad to be back....let the laundry begin!

I have much to do with the housework and garden, plus getting caught up on reading emails and getting ready for school, so not sure how much posting I'll get to this next week.  So, by the time I get to blogging, I may forget to elaborate on the Dallas trip...and I'm too tired to put it all out there right now!  I do want to explain the 'real' reason for our trip:

Trenton, my oldest son, has Retinitis Pigmentosa, a degenerative retinal disease which causes night blindness and loss of peripheral vision.  He will most likely eventually go blind.  Dallas is home to the Retina Foundation of the Southwest, which is active in testing, research, and trials associated with retinal diseases, and Trenton's extended family that is afflicted with RP has cooperated with them for years now to help with their research.  I am so proud of Trenton for going through the testing...I would not be able to do it!  His appointment took 3 hours, and consisted of regular eye exams, field tests, laser tests, photos of his retina and internal eye structures, and an ERG.  An ERG is this crazy test where they numb your eye and then place a contact on your eye.  The contact has electrodes attached to it.  They flash different colors and lights at your eye(like a strobe) and the electrodes record the response of the rods and cones of your retina.  This tells the doctors how progressed your disease is.  Trenton was a trooper!  No problems, just did everything asked of him! 

His last test was in 2008.  At that time we found out he probably only had about 70 degrees of vision peripherally.  A normal-sighted person has about 140 degrees.  He was very upset by this number, but in terms of RP, his numbers were great!  We didn't get a good estimate of his peripheral in degrees, but his tests this time showed a significant decrease in peripheral vision.  However, he is still within the legal limits required for driving, which is something he is hoping to be able to do in 3 years, so his peripheral is very important to him!
Another part of this testing process referred to the response of rods and cones...this shows how well he can see in the dark.  I have noticed a big difference in the past year in how Trenton navigates in the dark or partial dark.  Until his test results, though, I didn't realize how bad it was.  I'm trying to stay positive for him, but as I type this, I am in tears.  (My memory of these numbers are a little fuzzy, so bear with me!)  A normal rod response reading is over 75 microvolts.  In 2008, Trenton measured  at 34;  this year, his reading was too low to be measured, so it was recorded as 0.  A normal cone response reading is over 34 microvolts.  In 2008, Trenton measured around 18;  this year he was at 1.6.  As you can see, it was a significant change.

My heart breaks for him.  We will get through this, though...he will adapt, and he will lead a normal(ish), productive life!  I pray that he will find someone when he grows up that he loves, and who will understand and help him with his disability...he will need someone to help guide him in dark rooms, to drive him at night(and eventually anytime), to help him see what he cannot.  I also pray that when he has children, that if they inherit this disease(which they probably will), he will be able to help them to stay positive and make the most of the situation.  I also pray that the medical community finds a cure to help my son, and his future.


Mommy Hates Cooking said...

I am praying for him too!! Prayers can heal him and change everything!

beth said...

I stayed up way past my bedtime last night doing research on new treatments...found this incredible doctor in another state that has developed a form of acupuncture that has remarkable results in REVERSING the damage...we were just looking to slow the progression, and this guy is reversing it...I emailed him and am eagerly awaiting his reply to see if any docs here in OK are doing this procedure!