The "eyes" have it...

It's been a busy couple of weeks with Thanksgiving and a visit to the optometrist for Lucas. We were supposed to also go to McMaster Children's Hospital for our first opthamologist visit but unfortunately it was cancelled the day of and is rebooked for this week.

Alot of people have asked about Lucas's eyes and wonder what the long-term prognosis is, whether laser surgery is an option in the future, etc.  So I thought I'd try to write a little of what we know so far - and we still have alot to learn!

Lucas was born with bilateral congenital cataracts.  Basically bilateral means he had them in both eyes (as opposed to unilateral, or one eye).  Congenital simply means the cataracts are present at birth or early on in an infant's life.

Lucas was born near the end of August 2011, and in January 2012 our adoption agency's director was at the Go Vap orphanage where Lucas was living.  The caregivers said he was blind, and she asked to take a picture of him in the hope that maybe she could find a family for him.  She noticed that Lucas seemed to react to the flash of the camera, and based on her experience with facilitating an adoption a couple years ago for a little girl who also had congenital cataracts, she suspected cataracts might also be the issue for him.  She was given permission to take him to the same opthamologist in Ho Chi Minh City who had performed the surgery on the other child, and Lucas was given the diagnosis of congenital cataracts.  The opthamologist said they were operable, and our agency's director was able to coordinate the funds to pay for the operations.  With bilateral cataracts, each eye is operated on at a different time to help reduce the risk of cross-infection and also so that if complications arise with one eye, decisions can then be made before operating on the second eye.

Dr. Pham, his opthamologist, who was trained at Georgetown University in Washington, performed surgery on each eye when he was 4-5 months old.  Cataracts are not growths in the eye, rather the natural lens in the eye has become cloudy.  The removal is actually the removal of the lens.  He also had follow up procedures to remove scar tissue following the initial surgeries.

At about 8 months old, once his eyes had healed, he was given contact lenses to wear.  Lucas is now aphakic , meaning he no longer has a natural lens in his eye.  The lens is the part of the eye that focuses the image on the retina which is then transmitted to the brain to be processed and understood.

Many people ask about glasses or laser surgery to "fix" his eyesight.  Laser surgery (at least laser eye surgery that many people get today so they don't have to wear contacts or glasses) does not address the issue for Lucas.  He needs the contacts in order to replace the function of his natural lens, so Lasik or other types of similar surgeries would not help him.

Glasses - why not give him glasses instead of fighting to insert and remove the contact lenses?  At this stage, contacts give him the best possible vision.  They give him the ability to have a focused image for his brain to interpret.  The ability of the brain to interpret what the eye sees develops over the first 6-7 years of life.  Glasses at this stage and without wearing a contact lens would basically magnify an image for him, and likely create a distorted image, rather than giving him a focused image that contacts can.  He has lost a year's worth of time of his brain "learning" to see the images the eyes send it.  However, with the cataracts removed, he was able to see light, movements and (we think) some shapes, so his brain was at least able to start understanding some of what he was seeing, which was very important.

However!  He will eventually wear glasses AND contact lenses!  His contact prescription is currently set to give him focused vision up close, since as a toddler his world is mostly based on things being near him.  As he gets older, the prescription will eventually change to give him focused vision at a distance, and he will wear bifocals or reading glasses for close up.  Because he does not have a natural lens, he will not be able to have multiple focal points like we do (i.e., look at something across the yard and then focus on something on the table in front of him), so this is typically how the issue is addressed.

Implants - yes, there is such a thing as a lens implant, and it is typically done when an adult has cataracts removed, usually during the removal surgery.  The difference?  In an adult, doctors can create an implant with an accurate prescription for vision.  In a young child, it is a "guess-timate" - if they guess wrong, the lens will not provide a clear image and a new implant may be required, or other types of correction needed.  However, if a child becomes unable to tolerate the contact lenses (allergies, etc.) then an implant becomes more of an option.  Another consideration is that every procedure done to the eyes increases risks for glaucoma, retinal detachment, infection, etc. - so if the contact lenses and glasses are working, many doctors prefer to leave well enough alone and protect the health of the eye as much as possible.  (This is a very simplified outline of implants - young babies do receive them, and there are many factors which are considered for each patient - for Lucas the implant is not something we will consider at this point, unless something changes that requires it.)

So now that he has contacts can he see?  Ah, the million dollar question!  This is also complicated.  Removing the cataracts is the first step.  Providing "correction" is next.  Unfortunately the reality of living in an orphanage means that it is impossible to monitor his eyes 24/7.  If you've followed our journey so far, you will know that we have "lost" the lenses many times and been lucky to find them (well, except for 1!) - with us watching him all the time!  We constantly watch for him rubbing his eyes, try to check them before he moves to a different space so we can keep track, etc.  In his room in the orphanage there were more than 20 babies in the room, and there is no way they could watch him constantly.  By early July all the lenses had been lost, which meant until we got there he was once again without corrected vision.

The point?  The cataracts are gone and he has correction - but the critical part is now his brain needs to "learn" how to see.  Brain develop is the most important piece, because developing those neural pathways is what allows him to know what he is seeing.  His actual eyes are only one part of that.

So can he see?  According to our visit to the University of Waterloo Pediatric Optometry Clinic before Thanksgiving, the answer is a giant "YES"!  We had been communicating with Dr. Jones, a professor in the program there, since March when we first received the referral to consider adopting Lucas.  She was extremely helpful in answering our questions and helping us understand the information that we had received.  We were VERY excited to find out she would actually take him on as a patient, and that we could get in before Thanksgiving.  2 student optometrists and Dr. Jones spent over an hour examining his eyes, and were basically surprised at how well he is doing given his background.  They estimated his vision to be at about 20/100 (20/20 is perfect vision and I think 20/200 is legally blind), so he is well on his way!  They were also able to tell us the health of the eye looks good, and that he is using his vision to explore the world around him.  They predict he will have fairly functional vision in the future!  He will always need ongoing monitoring and glasses/contacts, and he will always be at a higher risk for glaucoma, etc., but at this point they were very optimistic that he will continue to develop his vision and not require blind/low vision supports when he is older.

We still have a long way to go, but needless to say I was about a billion pounds lighter walking out of that appointment with the weight of the world lifted off me!  (They also told me to stop looking up stuff on the internet and freaking myself out...).  I can't say enough good things about the appointment and how from the time I entered the building every person I met helped direct me to the right spot and made both Lucas and I feel so comfortable and taken care of.  We are so thankful that Dr. Jones will continue to see him!

We still have to see the opthamology department at McMaster to look at other aspects of his eye health, such as monitoring his IOL (interocular pressure) and watching for glaucoma, etc.  We are not sure yet who will be helping us with his contact lenses in terms of monitoring and updating those, but it is starting to come together.

So a long post to get to this point - he is doing great!  He has tough days where his eyes are more light sensitive and watery and those days he likes to be held ALOT and isn't as interactive.  But he has days like today where he gave us tons of eye contact, explored lots of toys and spaces, was goofy and laughing, curious and responsive, and happy.  So bit by bit his brain is doing the difficult and exhausting work of learning to process everything his eyes are taking in, and we are getting there.

Thanksgiving was quiet for the most part but we had a fantastic time on Thanksgiving Monday with my dad's side of the family ALL together (the Ontario part - missed having the families who are in Saskatchewan and Alberta with us!) for the first time in a while - 19 "little kids", 18 "big kids" and 6 adults - just missing my Grandma Heise who is in a nursing home in Stouffville now and wasn't able to come.  It was a gorgeous day and my aunts and cousins did a fantastic job of getting everything set up and decorated.  It was potluck with a ton of food of course. The kids all played together, ranging in age from 17 down to Lucas at 1 yr. old, basketball, playground, scavenger hunt, catch, etc.  The highlight was trying to corral 19 kids into 1 photo and get them all looking at the same time - a task made slightly more challenging after the screaming and running from some of the ones taking the photos when a large garter snake made its presence known!  Here are a couple shots (hopefully my cousins forgive me for posting the pic without getting permission from them!):

My favourite shot of 2 of my nieces, Chantler & Willow, with Maiya:

Lucas with my big brothers, Craig and Breydon:

Our first visit to the pumpkin patch on the weekend with Lucas - right when the sun disappeared, the wind picked up and it was damp and freezing - gave up on trying to get a picture with Lucas actually looking at the camera - he was more interested in the dirt on the ground!  Maiya tried so hard though!

Some shots from home - he'll be reading chapter books by Christmas I'm sure!

We were happy to have a visit from some friends from my work and were surprised with some gifts, flowers, a beautiful cake (thanks for the cake Jagoda!) for Lucas.

We got the art work framed for Lucas that we bought in Vietnam and absolutely LOVE the way it turned out.  We took the rest of the pieces we bought to get done this weekend so hope they turn out as well (these were the ones we bought in the little alley/shop that was also a motorcycle parking garage - there's a picture of it on an earlier post!).

Lucas also got to spend time with 2 of his great-grandma's on Thanksgiving weekend - GG (Brett's Grandma Myra) and Grandma Alma (my Grandma Watson).  Unfortunately I forgot to take my camera!  But it was great watching him with them - both Maiya and Lucas are very blessed to have 4 grandparents and 4 great-grandma's in their lives.

We hope to head to McMaster on Thursday and we have a developmental assessment team meeting with us in early November from KidsAbility, a meeting with our CNIB home support worker and the vision family support worker from KidsAbility this week - so lots still coming up!