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.

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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.

Caleb is going to be a big brother

Posted January 6, 2012 by elaine
Categories: blepharophimosis, medical genetics

Happy New Year from Caleb (30 months old)

Yes, we’re expecting another little one in our house in July 2012!

A few people have asked us if we’re concerned that our 3rd child will have blepharophimosis. Blepharophimosis is a genetic disorder, however, in Caleb’s case, it appears to be a de novo mutation, meaning a new mutation that was not passed along from a parent. There is no family history and therefore have no scientific basis to expect another child with the same disorder. But, having a child with a random genetic mutation does make you realize that it’s a miracle that any of us are born healthy. By the grace of God our new little one will be born without any difficulties.

Caleb is a chatterbox these days, sometimes going on with a commentary about everyone and everything that he sees!

In late November he gave us a bit of scare with a sudden onset fever followed by a febrile seizure. We had to call 9-1-1 because he was unconscious for some time. At one point was an interesting discussion with the paramedics about whether Caleb was conscious. Because of small eyes, they had some difficulty opening them to check if his pupils were responsive to light.

Caleb has his next check up with the pediatric ophthalmologist at Children’s Hospital at the end of January.

optometrist promo

Posted July 30, 2011 by elaine
Categories: blepharophimosis, glasses, visual development

I haven’t written in awhile, but there hasn’t been much on the blepharophimosis front to update on. Caleb is developing well and, in fact, seems to have had less gooey eyes in the past month or so. After dismal weather through June and July on the West Coast, summer has finally made an appearance. Since hubby B is a school teacher, we get to spend the summer with him… bike rides, beach, water park, playground, yay!

Since there is not much to update on Caleb, this post is really actually a blatant push for parents to have their children’s eyes checked regularly. Infants as young as six months old can have regular eye exams to “identify and address problems early and safeguard children’s vision as they grow” (BC Association of Optometrists). I am often asked how Caleb’s glasses prescription was determined when he was so young (“He didn’t know his letters at 13 months, did he?”) and how they knew he was farsighted. Babies are not too young to be assessed for things such as nearsightedness, farsightedness, astigmatism, colour perception, lazy eye, crossed-eyes, eye co-ordination, depth perception and focusing ability.

Through the Medical Services Plan in British Columbia, Canada, children age 0 to 18 years qualify for one full eye exam each year. There are also benefits for low-income families. I urge parents to have their children’s eyes examined.

Caleb is two!

Posted June 20, 2011 by elaine
Categories: Uncategorized

I’m a week late, but it has been a busy week!

Happy 2nd Birthday, Caleb!

We had a construction-themed party!

reminder

Posted May 27, 2011 by elaine
Categories: blepharophimosis, glasses

I was reminded how small Caleb’s eyes are over the past day as he has been without his glasses. We had to drop them off yesterday so new lenses could be put in; we were supposed to pick them up today, but didn’t receive a call from the optician. He looks so different without his glasses on and seeing him like this makes think more about things such as, “Can he see well enough?” And the doer personality in me wonders, “Should we be doing anything else to help him?” But somehow our adaptable little guy just carried on with his day. I have to trust that the specialists know what they are doing.

We got a lot more questions and double takes while Caleb has been without his glasses; people usually see his glasses and don’t really notice his small eyes. Got a couple of questions about whether or not he’ll learn to open his eyes more and the typical, whether or not he can see.

Side note: I guess we must shop at the produce store a lot… even the cashier asked what happened to Caleb’s glasses! 🙂