Just having fun...

Still waiting on our exam under anesthetic at McMaster - booked for November 14th, so we will hopefully have more answers about Lucas's eyes then.  A little nervous since he supposedly had a reaction to anesthetic in April during his last procedure but we don't have any details, so hoping it doesn't happen again.

Will post more updates in the next post with some Halloween pics, but thought I'd put up this video of him with his walker - still not going on his own yet but so close!

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!

6 weeks later...

Six weeks after leaving the orphanage, Lucas is doing amazingly well.  He has 2 bottles of formula a day (which is how we are now getting the contacts in and out - no screaming, crying, trauma, etc. - he may be having bottles for a long time to come!), he eats everything we feed him and constantly wants more, he almost never spits up/throws up anymore, we don't have to have a towel under his neck when he drinks his bottle to catch the overflow (in fact he doesn't miss a drop now!), he is signing "more" consistently, waves hello and goodbye, blows kisses and is smiling more and more every day.  We are getting eye contact more frequently and he is finally showing signs of attaching to us.  We think he is going to be quite a little character as his vision develops and he becomes more outgoing.

We have an appointment at the University of Waterloo with a pediatric optometrist who was helping us when we first received Lucas's referral.  We are so excited that she is going to take Lucas on as a patient and that she can get us in this week.  This will be our first specialist who can finally give us some information on the health of his eyes and whether we could potentially be looking at more surgery sooner than later.   We have cancelled our Sick Kids appointment as we were able to get into McMaster in Hamilton on October 9th, which is a month sooner for orthoptics and opthamology.  Lots of learning for us too and hoping we will maybe get an updated prescription and a sense of how his vision is developing.  We are expecting to have to patch his left eye to help strengthen his right, which won't be fun, but want to get going on it to give him every chance possible to develop as much functional vision as possible.

We had a busy weekend with the Apple Butter and Cheese Festival in Wellesley on Saturday morning, followed by the Mid-Autumn Festival with other families who have adopted from Vietnam and China.  It was great to see some of our friends there, especially the family who visited Lucas when he was in the orphanage during their own adoption trip.  Looking forward to Thanksgiving next weekend when we get together with all my Heise cousins (aunts, uncles, first cousins, their kids, my family - everyone who is in Ontario at least!).

Here are a few pics from the last couple of weeks!

One month later...

One month ago today we were heading to the orphanage to meet Lucas for the first time. Hard to believe how much changes in a month.

A month ago he was getting 6 bottles of formula a day and some rice porridge (congee). He didn't know how to chew solids, even a Cheerio, he spit up (copious amounts - just ask Brett who was usually the victim!) after almost everything he ate or drank, he didn't have any kind of fine-motor/grasping skills, and he couldn't feed himself finger foods.

After a month of being together, and 1 week of being home, he has learned how to do the sign for "more" (well, his version of it - it's more of a wild clap and a "ba" as you can see in the video, but it's consistent and it's better than screaming!), he LOVES to eat finger foods which he can feed himself, he is eating pretty much everything we put in front of him and would eat constantly if we let him, and while he doesn't quite have a consistent/accurate pincer grip with his finger and thumb, it is coming along and he has a good raking grasp which he didn't even have before. He rarely spits up any more although he has some pretty good burps happening! As you can see in the video, he is eating gourmet home-cooking (hey - I was jetlagged and Kraft Dinner was the closest thing to cooking that was going to happen!).

The jetlag is pretty much gone, although Lucas has had a couple nights where he's woken up around 4ish and has a hard time getting back to sleep. For the most part he sleeps from 8pm until 6-7 am, so it's pretty great. He hasn't quite decided how he is going to coordinate his naps so we are still figuring that out!

He can wave "bye bye" now. He crawls everywhere, pulls up on anyone and anything he can, and today decided he would climb up 3 stairs in the 2 seconds I turned my back. Looks like we may have to invest in a baby gate for the bottom of the stairs now too! Since we've been home he likes to be held alot more, so that makes it a bit tough on the back, especially with how big he's getting. He was close to 20 lbs when we were in Vietnam and I'm sure he's gained a pound or two since. He will weigh more than Maiya by this time next year if he keeps it up!

And then there's the battle of the contact lenses. The contact lens guardian angels that we must have watching over us have allowed us to keep the original pair so far, which is great. We are desperately trying to hold on to them until we can have an update on his prescription (which will likely be different than the prescription he has now), but not sure they will last that long. At this point we can't get into Sick Kids until November. We are now trying for Hamilton in hopes that we can get in sooner. We are disappointed that we are having to wait this long to get help as he needs to have his left eye patched as soon as possible to allow his right eye to start working harder. (not that I'm looking forward to dealing with patches on top of dealing with the contacts!).

The good news is that we have found a method of insertion/removal for the lenses which is working great for now. It is not ideal, as it requires both of us and it would be best if we had a way worked out to both be able to do it individually, but for now at least we are getting them in and out in under 30 seconds per eye (this morning was about 5 seconds per eye to insert) and there is no screaming and no holding him down. The magic trick? Doing it while he is drinking his bottle. Apparently he loves his food so much that it is more important to keep drinking than put up a fuss. We tried to do it with a sippy cup today (which he hasn't quite mastered) and he was having none of it. So he may be having 2 bottles a day for a long time! Hopefully this at least gets us through until he is more settled in and until we can see the specialists.

We have had a couple close calls with losing them though - after lots of searching and pretty much giving up we found one between the seat cushion and the arm of the living room chair when Brett sat down, ready to give up. We found one in his crib after nap too. To give you an idea of what we are searching for here's a picture - the case is a contact lens case to give you a comparison (each part of the case is about the size of a quarter). This was what the lens looked like when I found it in the corner of the crib after alot of searching!

So we are settling into a routine. Maiya is loving Gr. 1 French Immersion (she says she "prefers the French half of her day since she already knows alot of words in English so it's good to be learning in French") and is doing great dealing with the contact lens stuff for Lucas. This was her on her first day (which was really the 2nd week of school).

We have a couple appointments at KidsAbility coming up this week so hopefully I will see a few familiar faces over there - it will feel VERY strange to be entering the building as a parent instead of as a teacher!

Here are some pictures from our first week and a half at home:

First breakfast at home.

Playing with Maiya.

Daddy may be pretty smart, but apparently he misunderstood the expression "we all put our pants on one leg at a time" when he was dressing Lucas...and no, he didn't even realize what was wrong until it was pointed out to him!

Awesome diaper cake from the staff at ConAgra Foods where Brett works! Apparently the blog had quite a following at ConAgra and their thoughtful and generous gifts were amazing and so appreciated. The actual cake (that they ate) said "I didn't do it, Daddy - she did!" They had cut out pictures from the blog and even had a "big sister" gift for Maiya. Thanks everyone!!

I will try to do a post soon that explains some of the issues with his eyes and contacts, etc. Lots of people ask questions about why contacts vs. glasses, etc. and what can he see so I will do my best to share the limited amount I know!

Home Sweet Home!

Well, the last week has been a bit of a blur but yes, we did arrive home at the end of last week, safe and sound. A few of Lucas's fans have been hoping for the arrival post so thought I'd better get to it!

The checkout at the hotel went very smoothly, despite the fact that our wake-up call was at 3 a.m.! We were checked out by 3:30 a.m. and on our way to the airport. It was worth the early morning departure (almost!) to see HMC when it's sleeping. The streets are empty except for the large trucks, which are only allowed in the downtown during certain hours to help with traffic congestion (not to mention the flow of traffic with all the motorcycles would likely not quite work the same with transport trucks in the mix!). With no traffic, the drive to the airport was quick and we were ready to check in.

It was much nicer flying in and out of the new international airport, which wasn't opened yet when we were here with Maiya. We had the same trouble initially with Lucas's ticket that we did with Maiya's when she was a baby, likely since it is a one-way. It was worked out quickly and we were through security quickly as well. Unfortunately since it was so early in the morning nothing was open inside the airport, and it seemed like the air conditioning hadn't been turned on yet either!

The first flight was a bit tough. Lucas cried for the first hour or so (although it felt much longer!) and I finally strapped him into the baby carrier which calmed him down and he fell asleep. The worst part though was the heat - it was unbelievably hot on the flight, and we were all more than happy to get off the plane and into some air conditioning!

Unfortunately it seems the Tokyo airport is supporting power-saving measures (maybe to do with power shortages following the earthquake last year?) so we had a brief interlude of coolness walking down the hallway to the escalators and were then back to the heat. It was still better than the plane though! By the time we had cleared security again and got to our gate, we thought we'd have time to look around and get a bite to eat. Unfortunately Brett realized that we had to go check in at the Air Canada desk - the one with the long lineup of course! - and we all had to be there. The flight was full so we weren't able to change our seating assignments, which were across the aisle from each other with people on either side. By the time we finished that we had enough time to grab a drink and a muffin to eat at the gate, get Lucas changed and bottles made, and then board the flight home.

The Air Canada flights were excellent both ways though. As soon as we boarded they came to our seats and talked to us about anything we might need for Lucas. Maiya got the kids meal this time which was so much better for her (our travel agent forgot to request it on the way over) and they brought jars of baby food too. Lucas was much better on the flight and slept a fair amount, although the rest of us didn't get much sleep.

About 24 hours of travel time after we left we finally landed back in Toronto. Maiya was more and more excited the closer we got, knowing it was bringing her one step closer to seeing her "Buddy" - she missed her puppy so much while we were away! Immigration was lined up but moved quickly and we didn't have any issues, although the girl at the desk was confused about Lucas's Canadian passport at first. We explained the process is different than it used to be and everything was fine. (Maiya arrived in Canada as a landed immigrant and obtained citizenship almost a year later, while Lucas arrived as a Canadian citizen already - the laws around this changed a few months after we traveled with Maiya).

Luggage was slow but finally we were piled up and heading out the door.

We were surprised to see a few of my aunts and uncles (my dad's sisters) there waiting for us, along with my dad, Brett's parents, my sister and my niece. Everyone was waving and taking pictures and there were lots of hugs to go around once we were out. I got a few shots but it was too hard to maneuver Lucas and the camera both so hopefully we will get some shots from some of the others who were there! It was definitely good to be home (and I think my dad was especially to have mom home again too!).

Tired travelers - looking a little bleary-eyed but happy to be home!

Poppa (my dad) and Lucas

Grandpa Ron (Brett's dad) and Lucas

My niece, Cassidy, with her newest cousin!

Maiya was SO excited to see her cousin!

Brett's parents were driving us home, so after grabbing some cold drinks at Tim Horton's (we were too hot to have coffee!), we all fell asleep for most of the drive - Maiya was out cold and didn't wake up until about midnight! My brother Craig and his family came to pick up my niece, Cassidy, and then Brett's parents headed home too. They kept Buddy for a couple extra days for us to give us time to adjust, which was a big help!

Grandma Trish (Brett's mom) finally gets to hang out with Lucas back at the house.

Jetlag kicked in and we were up through the night, but it was still good to be home! Will continue to try to catch up in the next post about the first few days back.

Blood, Sweat, and Tears...

Okay, so not really any blood, unless you count bloodshot eyes from lack of sleep, but lots of sweat courtesy of the hottest flight I think I've ever been on followed by a very hot Narita airport on power saving measures (so minimal air conditioning), and tears from our crying baby for the first part of the 6 hour flight (although not too many on the 12 hour flight) - but we're home!

I will try to backtrack to the last couple of days of the trip and catch up to the first few days home, which are a bit of a blur!

The last couple days in HMC were pretty quiet. We ventured out to the History Museum by the Zoo, hoping to finally see a traditional Vietnamese water puppet performance. When we arrived at 2pm, the ticket booth staff told us we had to wait until 3pm for the next show. So we bought our tickets and wandered around the museum for an hour. We were actually surprised at how large it is and enjoyed seeing many of the ancient artifacts that are housed there. It is always mind-boggling to see cultural artifacts that are thousands of years old when we live in a country that is so young.

As 3pm approached we waited with some others by the entrance to the show, after being reassured several times through elaborate gestures from the security guard that the show would indeed be happening. After waiting for about 20 minutes a girl opened the door and said in English - "Can I help you?" - we all looked at each other and rolled our eyes, knowing what was about to happen - sure enough, no show and a suggestion to come back the next day. Unfortunately that was our last opportunity so we were out of luck. One lonely shot of a discarded puppet was the closest we could get - disappointing but will add it to the agenda for our next trip.

Mom was finally able to get back to the money exchange place where she made her millions. It had been weighing on her but with the national holiday we couldn't get back to it for a few days. Brett walked over with her and as they came into view of the window, Mom recognized the girl right away to be the same one who had accidentally given her the extra cash. The girl looked up and her face lit up as she rushed through the customers already in line while maintaining as much eye contact as possible with Mom! As soon as they got to the window the girl said, "I know why you're here!! I made such a big mistake and lost so much money!" She thanked Mom over and over and they even hugged before Mom and Brett left. Unfortunately they didn't have a camera to capture the moment but it definitely made Mom's day to be able to return the money and know the girl would not get in trouble or have to pay the money back herself.

Brett headed off to pick up a couple souvenirs we had been wanting and Mom walked back to the hotel on her own - pretty proud of the fact that she was walking around in HMC on her own!

On Wednesday, our last day, Mom stayed with the kids and Brett and I headed out in search of some artwork to add to our collection. It was a good chance to get some shots of the typical sights around the city that have become so familiar over the last 3 weeks.

Small intersection - I think you can see 8 lines of traffic in the shot!

Safety measures on most construction sites around the city were pretty tough to spot!

One of the many street vendors around the city.

Canadians get their coffee to go as they rush off to work in the morning - the Vietnamese pull up a stool at their regular street vendor, read the paper, chat with friends, and share the experience of a steaming bowl of pho or a strong Vietnamese coffee. A testament to the community feel that is achieved in a city of millions.

Really amazing that electricity actually functions anywhere! The collision of wires at any given junction is still amazing to see!

And my favourite HMC activity - seeing what all can be transported on a scooter/motorcycle/moped/bicycle/cart! Love the "carseat"!

We found some art shops and were able to purchase a few pieces. The best part was the fact that the one place where we bought several canvases was also a motorcycle "parking garage" - note the ramp - so we had to jump out of the way several times after incoming motorcycles beeped at us as we were admiring the art!

We finished off our last day with a couple hours at the pool, visiting with the Alberta mom and her very cute little girl, ordering room service, and packing. Our 3 a.m. wake up call on Thursday morning came all too soon and we started the long journey home. Will post more about that and our arrival back in the next post!