New and notable

Posted September 4, 2014 by elaine
Categories: blepharophimosis

It’s been awhile since I posted anything, but we’ve been busy over here! Caleb became a big brother again in March.

Big brother Caleb

Big brother Caleb (glasses broken)

While others with blepharophimosis have family history that can be traced through many generations, we do not. Caleb is the only one in our family with special eyes.
In June, Caleb graduated from preschool and turned five years old! He is a creative, passionate boy with lots of energy. Although he is usually loud and boisterous, he does have moments where he is thoughtful and gentle with his siblings. He loves building with Lego, colouring, drawing, creating things with paper, and acting out scenarios with his toys. His big interests in the past year were dinosaurs, trains, and The Lion King. Caleb continues to impress us with his ability to read and spell; he seems to have learned a lot on his own and has an excellent memory. Caleb’s mind is always racing ­— he’s a thinker and a dreamer, asks lots of questions, and has a wonderful imagination.

Happy 5th birthday, Caleb!

Happy 5th birthday, Caleb!

Caleb had another uneventful check up at Children’s Hospital in late August. His visual development is on par with typical 5-year olds. Dr. Lyons was pleased with his progress. Funny moment: Dr. Lyons confirmed that Caleb’s vision was great for his age and that he would be able to drive in the future (I never even considered that might be an issue!) Caleb perked up and said, “I get to drive now?!” Um… no, you’re going to have to wait at least 11 years.Dr. Lyons did suggest something that was rather interesting… that in the future, we might want to consider glasses with larger lenses for cosmetic reason. Because Caleb is far-sighted the contour of his glasses lenses would magnify his eye size. But since Caleb is half-Chinese, most people don’t seem to notice his eye size anyway.

And hurray: No change to his glasses prescription! Glasses and their associated issues seem to plague our family: broken/bent frames, lost lenses, new prescriptions shortly after replacing lost lenses, etc. There were a few months that, between Caleb and his older brother M (who wears glasses for far-sightedness), we were seeing the optician so often he should have been in our family photo.

On Tuesday Caleb started kindergarten! Wow, I can’t believe my little guy is in school. He’s loving it!

Quick ‘n’ dirty update

Posted February 24, 2014 by elaine
Categories: blepharophimosis, visual development

Caleb had a regular check up appointment at Children’s Hospital nearly a month ago but I’ve been so busy I have had time to post anything about it. Overall, things are going well with Caleb’s eyes and the appointment was fairly uneventful. He is getting more clever though and has decided he doesn’t like the eye dilating drops. A little bit of encouragement is needed for him to stop from wiping his eyes after the drops go in.
Quick ‘n’ dirty:
– Caleb’s visual development is typical for his age.
– No surgery seems necessary at this point. It would be for cosmetic reasons at this point.
– Slight change in Caleb’s glasses prescription. He’s still extremely far-sighted. In some ways this makes the blepharophimosis less obvious because his glasses lenses magnify his eye size. This combined with being half-Chinese and people hardly even notice his eye size.
– No more eye patch for now; this will be reassessed at the next appointment. Caleb didn’t seem to mind the eye patch, but we forgot on the occasional day and I had to make a point of leaving it somewhere so we would remember.
– Caleb is going to be a big brother (again) in the next couple of weeks. Although genetically derived Caleb’s blepharophimosis is a unique occurrence in our family and we have no expectation that any of Caleb’s siblings will have the same disorder.
Caleb’s next appointment will be right before he starts kindergarten (Kindergarten! Geez, how did he get so big so fast?!) in September.

passport addendum

Posted June 28, 2013 by elaine
Categories: blepharophimosis

The price of a Canadian passport for a child is increasing by $20 on Canada Day. Since Caleb’s passport expired and there’s the possibility of us traveling over the summer, we thought it would be a good time to get another one. I previously posted on the passport photo – blepharophimosis issue when Caleb got his first passport in January 2010. The photo that you submit to Passport Canada requires that the eyes be “open and clearly visible”.

I had to explain to the clerk at the passport office that Caleb physically can’t open his eyes any wider. He thought the photo looked acceptable, but admitted that it is sometimes a matter of opinion (one person might thing the photo is fine and another doesn’t). So he ended up writing a note mentioned that Caleb has an eye disorder which limits his ability to open his eyes further.

Has anyone else had passport photo challenges?

doing well

Posted June 17, 2013 by elaine
Categories: blepharophimosis, glasses, visual development

IMG_3420Caleb had a regular check up with the ophthalmologist at Children’s Hospital on Wednesday last week. First stop was a vision test with an extremely personable gal. Caleb was tested at 20/25 vision which is typical for a child his age and depth perception, etc. Next stop, the ophthalmologist, Dr. Lyons. Dr. Lyons said that Caleb is doing really well. His visual development continues to be typical for his age. No need for any kind of surgery at this point.

Dr. Lyons was concerned that his right eye seemed to be on the verge of lazy eye so he recommended daily patching of Caleb’s strong left eye for a couple of hours a day. Caleb picked out some fun adhesive eye patches and has been quite excited to wear them and show them off. Usually we do the patching at home, but one day we were at the ball field where Caleb’s older brother M was playing baseball and pretty much everyone we encountered asked about the eye patch. Caleb didn’t seem to care, but it reminded me of Caleb’s eyelid taping days where I would have to keep repeating myself (which was really more annoying than anything else because I kept explaining the same thing over!) Next check up is in 6 months — a good sign that all is well.

Happy 4th birthday, Caleb!

Posted June 17, 2013 by elaine
Categories: blepharophimosis, glasses

Happy 4th birthday to our spunky, determined, imaginative little boy!

IMG_3396

check up

Posted November 6, 2012 by elaine
Categories: blepharophimosis

Nine months — it’s the longest Caleb has gone without seeing the pediatric ophthalmologist at BC Children’s Hospital. It’s good news because it means he’s doing well.

An appointment at Children’s means clearing the schedule for the day, lots of snacks, a bag full of entertainment and patience. We dropped M off at school then made the hour drive, shopped briefly at a store near the hospital that doesn’t exist anywhere else in Vancouver (figured we were in the neighbourhood we should pop in!), then over to the hospital. It was over an hour wait before it was Caleb’s turn. Thankfully he made a friend — a 5- or 6-year old boy — that was pleased to play an imagination scenario with him involving a toy cow and giraffe and a little train.

Dr. Lyons was pleased with how Caleb’s eyes have changed since the surgery he had nearly 3 years ago to widen his eyes horizontally. The epicanthic fold is no longer present which allows Caleb to open his eyes more than before. A visual acuity test with glasses on showed Caleb was seeing a bit differently than his glasses prescription so he was due for eye dilation.

Caleb was very obedient and opened his eyes wide for the first drop. Ha! He got smart for the next drop and squeezed his eyes tightly. I had to hold Caleb’s hands away from his eyes while Dr. Lyons forced his eyes open to get the drops in. More waiting while the effect of the drops kicked in. Turns out Caleb’s left eye is getting better (acuity-wise) while the right remains the same. So time for some new glasses lenses.

There’s still no firm decision on date or necessity of sling surgery yet. Most people don’t seem to notice the size of his eyes because of the glasses (because Caleb is far-sighted the lenses make his eyes look larger).

Next appointment will be in June 2013 when Caleb will also see someone from oculoplastics and also have his eye muscle strength measured.

big brother Caleb

Posted July 30, 2012 by elaine
Categories: blepharophimosis

Newbornhood has taken over our home so I’ve been a little slow to post this photo of Caleb, the big brother.

Our daughter K was born on July 4 and her big brothers are thrilled that she is here. Caleb tries to engage her in play a lot, not quite understanding that her days consist mostly of eating and sleeping!

Since Caleb was born with a de novo mutation causing blepharophimosis (not passed from a parent), there was no expectation that K would also have blepharophimosis.

Happy 3rd birthday, Caleb!

Posted July 30, 2012 by elaine
Categories: blepharophimosis

Yes, Caleb’s birthday was over a month ago; we’re a little slow around here :).

At three years old, Caleb is a chatterbox and full of spunk! He loves music and singing, and dramatic play involving fake food. He’s a pro on his balance bike and enjoys swimming.

new lenses

Posted February 11, 2012 by elaine
Categories: blepharophimosis, glasses

We had his glasses frames adjusted in December (they are often getting bent out of shape) and the optician commented that we should consider replacing the lenses; they were so scratched that it’s a wonder that he could even see out of them. But we wanted to wait until after his ophthalmology appointment to see if his prescription had changed (no sense in getting a new pair in December only to do it again in January). This will be his third pair of lenses… the first ones lasted 9 months and these ones lasted only 7 months. I guess it’s all part of being a rough-and-tumble two-year old boy!

I decided to take him to a local optical place rather than the special children’s one that we’ve gone to in the past (the children’s one requires crossing a toll bridge). The new optician immediately said, “Wow, that’s a high prescription for a little guy” and also asked if his eyes were always this gooey or did he have an eye infection? Me in a bored voice, “No infection, he just has gooey eyes.” She was fairly patient with a squirmy Caleb who would rather have been playing with the toys at the other end of the store than looking into machinery to measure his pupils (difficult for her to see) and eye positioning. In the end we would have to wait for an exact quote because she wanted to call around to see about pricing for special coating and such. Not sure we’re going to bother with anything extra besides thinning them out. Chances are he’ll need new lenses before the end of the year.

ophthalmology check up

Posted February 4, 2012 by elaine
Categories: blepharophimosis, visual development

Caleb has been doing so well that his last appointment with Dr. Lyons, the pediatric ophthalmologist at BC Children’s Hospital, was over 8 months ago.

We were called into the patient room by a woman completely lacking in personality. I wasn’t even sure who she was because she didn’t even introduce herself… was she a doctor’s assistant? A visiting doctor? Resident? I saw Dr. Lyons walk into another room in the clinic and hoped he would come see us at some point. Anyway, she had Caleb’s chart and started asking all sorts of questions that I presumed someone would know after reading his file. The more questions she asked them more I began to wonder who she was! (I eventually suspected she was a visiting post-doc fellow.)

Nonetheless, Caleb passed all the tests with flying colours. The mystery doctor got a bit impatient with him while he was doing the visual acuity test (the Allen object recognition chart with icons, not letters because he’s a bit hit and miss with letter recognition still) and almost said something but bit my tongue. She was trying to get him to tell her what the object was but he wasn’t saying anything so she kept pestering him. It was the telephone pictured below (third row, first object).

Okay, let’s be realistic. I don’t think Caleb has ever seen a telephone that looks like that in his whole life. I don’t think he would be able to name the object if he saw it at full size. He’s probably only seen a phone with a cord once or twice at most. Maybe it’s time to update the icons! Anyway, he knew the duck, cake, and hand, and with his current glasses prescription, his vision is 25/20. The mystery doctor did a few more tests which Caleb passed with flying colours.

Dr. Lyons eventually came into our room with a medical student (who was introduced to us) to review the test results. The medical student did not know what blepharophimosis was so there was a lot of explaining. Caleb still spends a decent amount of time in the chin-up position and will eventually need frontalis sling surgery. But overall Dr. Lyons is very pleased with Caleb’s visual development and Caleb doesn’t need to have another check up until September!

Caleb, aspiring hockey player (Feb. 2012)

Side note: What’s up with Caleb’s Phoenix Coyotes jersey?! Yes, we live in Vancouver, Canada, but Daddy is a Winnipeg Jets/Phoenix Coyotes fan.