check up

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.

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2 Comments on “check up”

  1. Cayenne Says:

    Hey there. I’m a 17 year old girl with BPES, and I’ve been reading about Caleb’s journey. I was very fortunate to have been born into a family where BPES is quite common, so I never felt alone. It’s kind of horrifying reading about all the surgeries your boy has been through in his short life. I’d just like to say that I’ve never had a knife touch my skin and I’m perfectly fine. I have reading glasses I occasionally use, but other members of my family have ‘untreated’ BPES and 20/20 eyesight. For you, Caleb’s condition must seem like a bizarre abnormality that must be ‘fixed’ ASAP, but please know there are many of us who live quite happily and contentedly with our little eyes. I’ve never been bullied because of my eyes. In fact, Because of my pale blonde hair I’ve gotten used to strangers stopping me on the street to tell my how absolutely gorgeous ad exotic I am. Of course it’s hard sometimes being so different, but I’ve come to love myself and my uniqueness. I hope Caleb never grows up thinking there is something wrong with him, that his eyes are in any way not as good as anyone else’s. BPES just means you’re a bit different, and for me it has become a blessing. I hope you don’t put Caleb through any more surgeries that aren’t absolutely necessary for the well-being of his vision until he is old enough to make the choice for himself.
    I hope the best for you and your family.
    Xo Cayenne
    Ps. I read you live in Vancouver? I live in the Suburbs not far from the city. It would be absolutely amazing to one day meet Caleb, as I’ve only once met someone not related to me who had BPES and it was very briefly. It might be cool for him to see someone like him too.

    • elaine Says:

      Hi Cayenne,
      I just realized I never wrote a reply to your comment. Thanks for sharing your journey with me; I appreciate your honesty and hearing about your experience. So far Caleb (now 4-years old) has not noticed that his eyes are any different. People don’t usually notice his eyes because he wears glasses and is quite cute with them on :). We live in a suburb of Vancouver.
      Cheers,
      Elaine


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