Saturday, January 26, 2013

G-d is good!

Princess Bear (PB) had an appointment with her opthamologist today.  She has been seeing the opthamologist every 3 months since she was born.  We've done patching.  We've done eye drops to dilate one eye when patching was working.  We've just let thinks ride for awhile.  After it was decided on our Shriners visit last month that PB would not have any more surgeries on her skull the opthamologist was supposed to have his turn at the plate so to speak.  PB started wearing glasses when she was a few months old.  Vision was corrected.  Then there was a large loss of vision in her left eye.  Her eyes also focus independently of each other.  Her left eye tends to drift when she's tired.  Dr. Steve (the opthamologist that we've been going to since PB was 2 1/2 years old) had always said that surgery to straighten PB's eyes would be necessary when the surgeries were done on her skull.  So I went into today's appointment with some dread.  Dr. Steve's wife was explaining the surgery to me and the aftercare.  The surgery is outpatient and she didn't think PB would even have to do a 23 hour observation even with the Gilbert's syndrome.  The week after surgery is filled with various eye drops & ointments and minimal bathing.  The kids usually only take the day of and the day after surgery off.  The more Pam explained things to me the better I was feeling about the situation.  The only precaution she thought would be necessary is having the surgery done at the Children's hospital instead of the outpatient center since PB has a hard time being put under anesthesia. 

Today was also dilation day for PB.  PB has very, very dark brown eyes.  For that reason sometimes the regular amount of drops used for dilation are enough to dilate PB's eyes.  So these appointments tend to be very long.  PB is also one of those kids that has never let diminished vision slow her down.  It's almost funny to watch.  Today was a really great day in that the basic amount of drops dilated her eyes completely.  Dr. Steve came in to check on things and was very pleased with how her eyes looked.  Her right eye is 20/20 and her left is 20/60.  Considering at one point she was almost completely blind in her left eye this is some pretty good news.  The vision fluctuated for several years in the left eye but has been pretty constant for the past year and a half.  That was with and without atropine.  I hated using the atropine on her because the school never monitored her very well. 

Dr. Steve had always said that the threshold to regain sight in the left eye was running out.  12 is the absolute latest.  So I went into todays appointment thinking that we'd be scheduling the surgery to straighten her eyes and then spending the next 2 years doing atropine to gain as much sight as possible.  The surgery in the most basic terms is the Dr. literally unattaching all the muscles that hold the eye in place, realigning the eye and reattaching all the muscles.  Dr. Steve has been preparing me for this since PB was 2 1/2.  Today Dr. Steve spend a lot of time trying to track how PB's eyes were focusing and when the left eye would drift.  Her right eye is perfectly aligned.  Her left eye does not focus until her right eye has focused.  That means the vision of her right eye is very important.  If she were to lose vision in the right eye she would essentially be blind.  After watching PB's eyes for a pretty long time Dr. Steve turned to me and said "I don't want to do surgery. The right eye is focusing perfectly.  The left falls into place quickly and we've lost the game on recouping any more eyesight.  What do you think?"  Um, lets surgery?  I'm cool with that!  Dr. Steve then has to explain that protecting PB's right eye is of utmost importance.  She hurts that eye she's in a world of trouble since the left eye won't focus until the right eye does.  He decides that she needs to wear glasses for basic protection.  He then kind of scared the heck out of me explaining if PB is ever hit in the eye, scratches it or has any issue whatsoever we need to get to the office that day.  Do not pass go, do not collect $200.  He said that he'd rather check and tell us all is well and to get the heck out of the office rather than have me wait a few days and then have some damage that can't be corrected.  So he wrote out the script for the glasses for PB and said that he didn't need to see us until July and then once a year after that as long as everything was fine.  We've been going every 3 months.  I'm still wrapping my head around all this great news! 

We left the office and PB was so excited that she was going to be wearing glasses again.  She has broken my glasses pretending they were for her.  She decided she wanted her grandfather to help her pick out her new glasses.  Now I love my dad but he's never been a fashion maven.  I knew because PB's eyes are pretty widespread and the issue of her nose being wide put flatter would make it somewhat challenging to get glasses.  My mom showed PB some Hello Kitty glasses that PB instantly fell in love with.  Unfortunately the person helping us said that because of the way PB's nose is shaped that plastic frames are never the best choice for her.  All of the Hello Kitty frames are plastic.  Damn the luck!  PB was mollified with the idea of getting purple frames.   The guy that helped us couldn't have been any nicer.  We tried on so many frames.  He came through with a pair for purple frames that we're going to break the bank.  When all was said and done her glasses cost about $35.  Not too bad. 

So I am a very happy mom and grateful for the lucky start that my daughter seems to sail under!

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