ERG is the next step.

What is the next step for Colin? 

Once again, my apoligies for most likely poor spelling as I'm just in a rush and don't really want to edit the whole blog at this time.  It's rough around the edges, so hope you can read through the imperfections.  

Vision and Phone tag.
We've been playing phone tag with the Neuro-Ophthalmologist since last week to discuss what's the next steps with Colin's vision care.  Today at the grocery store I had to juggle this phone call between that blissful one hour of free child care you can get while you shop at their store.  Oh, how we do count the simple blessings in life!  1 hour free child for us to catch a break is enough of a blessing for us right now.  The 2 ladies we always see are amazing with him, and aware of his vision problems in case anything happens which puts us at great ease.  With that said..I'm just going to call the Neuro-Ophthalmologist the 'eye Dr' to simplify things. 

Many appointments.
There is many aspects that are having to be addressed with this Stickler Syndrome and all that it entails.  Not to mention having to find a minimum of 4 specialists just to get the other kids screened.  We're not up to close to 10 specialists now.  That means, between all of Colin's MANY appointments we'll additionally have 4 appointments for each of our children.  My oldest most likely won't need it.  But, if they all do still get screened that means we're going to need around 12 appointments just for the other 3 boys, and Colin himself combined with all those will equal 21 specialist [that's counting if only one visit is needed!].  Our Summer is already filling up quickly with the massive amounts of appointments needed.  I won't even say the amount of appointments Colin will need to maintain his vision health plus his body as a whole just to manage pain, comfort level, vision health..the list goes on.  We'll be getting to know these specialists by first name basis, which we already have started to call them by their first names now!

Retinal screening.
A huge focus right now is to get an ERG under anesthesia for Colin.  What is ERG?  ElectroRetinalGram: VIEW MORE DETAILS ON WIKIPEDIA ABOUT THIS The eye Dr once again reiterated that she is completely baffled by this light vision problem he's experiencing.  Briefly, I reminded her of the vision problems he's been experiencing such as where you're eye would go small in the iris, it goes completely wide in direct sunlight and visa versa.  I'm going to capture these problems on camera to offer her examples of what exactly we've been dealing with for almost 4 years now.  She has discussed Cone deficiency in the retina, however, there is certain criteria and situations which does not prove this possibility.  Of course, for some one who has pulled out Stickler Syndrome out of her hat where as other Dr's and other eye Dr's give us a shrug each visit..gives us no doubt in her abilities to determine an answer to this situation.  With that said, within the period of a few weeks we're going to be completing a follow up exam with the Eye Geneticist to over see our current Eye Dr's exam on Colin to measure his eyes once again to see if there is anything they might of missed, and to see if the Eye Geneticist can reveal anything new related to the Retina since he/she specializes in this. They will additionally get a base image for Colin's retina to keep an eye over in the case of any additional changes might arise.  

Relief to have people taking us seriously.
After years of feeling hopeless we've finally created a full medical support system.  Perhaps those years were just intended to create some sense of normalcy within our insanity of trying to get ahead in life with careers and recovering from crashing careers from rough economic times.  However, going forward we demand answers after feeling so helpless for years and it's so refreshing to hear the eager voice the Eye Dr had on the phone with me today.  You could tell her well educated mind just spinning with idea's and eager to help us progress answers further.  That, is exactly the person I want to handle my sons care!  Proactive, no reactive. 

This is something we haven't had, but have been seeking within our free time [ha..when is..?] and admittedly has been difficult to juggle between all the rest of our daily schedules to juggle over the years.  After asking around at Conners new school we had excellent feedback to this Pediatrician in particular who diagnosed this ladies daughter just by seeing her in person immediately called to have a lump on her neck surgically worked on when they were only there for an annual check up.  Later, the Dr' among one other specialist the lady claims to have told her that if she hadn't gotten that surgery the day of her node would of burst creating more problems than was needed down the road.  We heard 3 other ladies dish about how amazing this Dr was so hands down we switch all of the boys over into his care.  It was appearance with the Dr' appointment Logan had with him that he treated the kids with respect as individuals and not just 'another task' to complete.  Walking in to greet him like a Dr would with my own exam!  It was amazing accomplishment to finally have the kids in good hands.     

Lots more details to discuss or write about.  But for now that is the main thing  is the ERG about to be scheduled.  I can't explain how helpless we feel right now.  It's great getting answers but I do wish I could just switch my vision with his so he could see better than I.  It takes a lot to get my down and to be a negative person, but this is definitely a trying time.  We're just taking it one day at a time.  However, after years of being told he's okay but to get home and have enough light enter the room with his eyes only to check out as we call back to hear the same "It's probably just his quirk, nothing appears to be wrong with a basic eye exam".

Many people always questioning it and asking us numerous times why we don't have answers..constantly..as if we haven't been already trying with many people to get answers only to not get anything but "he's okay, it's just his quirk."  He's not okay! He was never okay since a baby!  We know that.  They tell you to talk to the kids Dr, we did, and got no where. We talked to many eye Dr's and no one wanted to put glasses on a toddler or baby.  What is wrong with people who think this way?  See those kids every week if you need, help them out!  Get kids their glasses, they need them to prevent problems and to get the gift of vision!!!  I want Colin to see as much as he can right now, which means he can play on the iPad for hours since it's one of the few things that caters to his vision but also allows him to repetitively educate himself while also making images larger for him to see better with this iPad vs. other tablets out there.

Years later, hearing the numbers on his exact vision being 20/250 with out glasses at the stage 3 with -9 & -8 eye glass prescription..which means he's so low vision that beyond that 20/200 we've found is the cusp for legally blind and glasses do very little with the point of no surgeries will ever correct this type of vision.  With glasses, he is 20/150 which is still Visually impaired, however, 50 away from Legally blind with glasses.  Break that down further to him only seeing 1 inch field of vision with out glasses, with his glasses he's lucky if he can see 10 feet right now.  With light involve...I am confident as is the Eye Dr validated...he can not see at all.  It's like his eyes check out entirely.  With that said, we are grieving this information for the sake of our poor son.  It does make us feel so helpless.  It's a shock, and something new to go through the motions of dealing with.  We've had people concerned but also who remind us to not make him feel less of a person.  Never will that be our intentions, but we're also grieving this new info.  Reality, that we've always known deep down, has come to surface for us.  It's okay for us to feel this way. 

Our goal is to make him as independent and self sufficient as possible despite it all.  In this situation, I'm reminded by this lady with Down Syndrome who had come into the shoe department to buy a pair of shoes from me.  She had come in knowing exactly what she wanted since she had a pair already on her own feet.  By an estimate, she most likely was in her 40's.  She wanted a pair of shoes that are a popular custom brand that never goes on sale.  However, she was determined to not leave until I gave her even $5 off or even 10% off of those shoes.  She had told me this..and I haven't forgotten it: "My parents taught me to grow up to live by myself and to always negotiate and if people don't negotiate with you, don't buy or do anything with them..always find a deal so you can save your money. She told me one day that she wouldn't be around to do this for me, so she had me do this as a child and I still do it.  So either you give me the deal, or I go walking out to get these shoes from some one else with even $5 off!"  Wow.  How could you say no to that?

That gave me a great perspective in sales for the future.  Never take no for an answer, and always try to get that yes no matter what.  If you don't, no one else is going to do it for you.  I went immediately back into the back to ask my manager an approval of even a $5 discount on these special shoes for this bright lady.  I gave her the brief, she disputed until she met this client at the counter.  "go ahead and take her $5 off" was the final word.  But the lesson learned from this example is prices less.  That lady no longer had her parents around for years but she still lived the legacy her parents had laid down for her.  What an inspiration!  Her parents I'm sure are proud of her.  This is the type of legacy I'd love to lay down for any of my boys.  Guidance, like a life coach.  They don't owe me a thing in return.  Watching their successes in life or even occasional failures which happen are enough to know I did good as a parent!