Seeing one!

August 13, 2010

We ordered Sarah prescription swim goggles about a month ago, hoping she’d have them for her swimming lessons, but they just arrived today.  As I’m sure I’ve mentioned before, Sarah never would take her glasses off – not even to sleep.  She would tell us that she couldn’t see her dreams!

Her glasses do a wonderful job of keeping her eyes straight, so as soon as she takes them off, her eyes cross and her vision is not just blurry, but she sees double.

She took her glasses off to get her makeup done for her dance recital.

D’Arcy picked up the goggles and took them to my parents’ house where the kids were going swimming.  Sarah put them on and declared in wonder, “But now I only see one of everything!” Alex explained that they were like her glasses, but she could wear them swimming.  My mother told me later that she found Sarah wearing them watching a movie.

I guess we have another back up if her glasses break!

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We’re just back from Olivia’s eye appointment with great news!  At last year’s appointment, there was concern that she was farsighted and that she would be getting glasses like her siblings. Today, she sat up like a champ and “graduated” to the H-V-O-T chart instead of the pictures.  She was able to read to the 20/20 line in each eye and sat still and co-operated for all of the various tests.  Dr. S was triumphant when he announced that the problems she had last year have almost resolved  – she’s almost outgrown her hyperopia!  If they prescribed her glasses at her current state, they would be about a +1.25 to +1.50 which in this house is nothing! And because her eyes are still seeing almost equally, there is no fear of amblyopia!

She doesn’t have to go back for another check up until she’s registering for school in two years!

One less thing to worry about – yipee!!

IMAX here we come!

March 8, 2010

The fact that Alex’s vision isn’t perfect doesn’t bother him.  That’s just the way he sees and he seems to adjust beautifully.  His one disappointment is that he does not have depth perception, and therefore cannot see 3-D images.

We just received our sign-off letter from Alex’s Paediatric Opthalmologist, releasing Alex from his care.  The one paragraph that stands out, reads:

“Unfortunately, we do not have any evidence of fine detailed depth perception with the tests that we have at our disposal in the clinic but, considering the very good alignment of his eyes, I would not be surprised that, indeed, he is able to perceive three-dimension movies in the large screen movie theatres.”

I guess this means our first trip to the IMAX is in order!

Eye Clinic Graduate!

January 28, 2010

We got some unexpected, but much welcomed news at Alex’s eye appointment at the IWK Eye Care Clinic on Tuesday – he no longer has to go there anymore!

EVER.*

(*Unless something happens to his eyes, or his right one starts to turn again.)

From now on, he will be seen once a year by a local ophthalmologist.  (The same ophthalmologist that Sarah sees.)

Alex first got his glasses when he was 3.5, after we noticed his eye start to turn. Thinking he had a “lazy” eye, we took him to the eye doctor to find that he was legally blind in his right eye. His vision was 20/400. (And here we just thought he was clumsy!) He had strabismus which led to amblyopia.

Over the years, we patched, dropped, argued, bribed & begged. We had sticker charts, bought webkinz and occasionally sat on him to get him to wear the patch. D’Arcy wore a patch to the school fun-fair one year, so that Alex would feel less self-conscious and couldn’t believe how difficult it was to get around and how many people asked rude questions. The Atropine changed Alex’s personality and sometimes gave him nightmares. When he started school, his vision was so bad he qualified for special education funding; he had special paper with black lines, and pictures to color that had been glue-gunned so that he could feel where the edges were he was supposed to be colouring. We had to buy a sippy cup because he couldn’t find his dishes on the table and would knock things over. I got a call from the school on his very first day because he couldn’t tell where the playground ended and the pavement started so fell and got scraped up. He was allowed to sit as close to the tv or computer as he wanted for years.

I can not even hazard a guess at how many sets of frames & lenses we went through in that time period; we had to replace his lenses the very first day he had glasses because he tripped and fell flat on his face, scratching them up…

He was never a “text-book” case, and the orthoptists actually presented his case in their classes on different occasions. His stronger eye was so dominant that at one point, it was “seeing” through the atropine for him. In essence, his brain would rather decipher the blurred image than use his weak eye!

Now that it’s over, those trials & frustrations seem like a lifetime ago. He has gone from being legally blind to being capable of  20/40 vision (he sits between 20/50 & 20/60) which means he should be able to drive. He does not have 3D vision (depth perception), yet manages to curl & play golf! He is colour blind, but so are lots of people.  His turn has gone from being greater than 30 degrees to one degree when they manipulate it!  In other words, it’s imperceptible to the naked eye!

I’m going to miss our monthly “date”, Alex & Mommy to the IWK, but I’m sure we’ll be able to come up with a better use of our time!

Alex, age 3

Alex's first day with glasses (and chicken pox)!

Alex, age 5 - eye turning more

Age 6

Age 7

5.5 years of patching and drops...

A jealous brother who wanted glasses of his own...

The night before surgery, April 7th, 2008

Recovering from Surgery

A week later...

Age 8 - Love those straight eyes!  (Still using atropine though...)

A few months later - Love those straight eyes!

Age nine - newly off the drop!

Our handsome boy, Age 9!

It was a long road for all of us, but especially for Alex.

We couldn’t be happier or more proud of him!

A Lesson in Empathy

October 20, 2009

Yesterday was Alex’s monthly eye appointment at the IWK.  He & Evan have been anxious to see Chris, so I had asked Gwen last week if she thought it would be okay. She thought that Chris would love to see the boys.  I told Evan that he would be allowed to miss school to accompany Alex  and then the three of us would go to the hospital together.  Alex & Sarah busily started making cards.

Alex’s eye appointment went well.  He had a senior medical student, Sarah, and his favorite orthoptist “Dr. Mike” checking him out.  This was the first visit since he’s had his new glasses with his full prescription and no patch or drop, so they spent some extra time making sure that all was well.  His vision had dropped by three letters, but we had been expecting that.  “Just a bump in the road; he’ll have good vision days and bad vision days.  At this point, we only will be alarmed if he has a two line drop from his best vision,” Mike explained.  He was thrilled with the way the new glasses are keeping his eye turn in check.  Before Alex’s surgery, he had an inward turn of 66 diopters, or 35ish degrees.  Yesterday, his turn was variable (in or out) and only measured between one & three degrees!!  Hallelujah!  For the first time in five and-a-half years, Alex gets to go two months between appointments rather than his usual four weeks!

After we finished up with Alex’s appointment we left to see Chris.  When we got to the hospital, we checked in with the nurses’ station to make sure it was a good time and they said that the nurses were in with him at the moment, but would be finished soon if we’d like to wait.  We did wait outside his door and discussed the sign posted on his door that says “Chris would like to have a tv”.  At the moment, he does not have a tv because they feel it would possibly keep him from sleeping, interrupting valuable healing time.  After what felt like about ten minutes, (a nurse had come by and explained that he was having a “procedure” to which we replied, “no rush”!)  a tall, thin, blond nurse told us we could come in.

The three of us went in together and found Chris up & dressed and in a wheelchair.  He has lost a lot of weight and his left hand was curled inwards.  He reached out to me with his right hand.  I told Chris who we were, but he already knew.  The nurse told him to put his head back because he was leaned forward and she helped him rest his head on the headrest of the chair.  I bobbed around a bit, trying to find his line of vision.  (As it turned out, when I was getting the boys settled into bed last night, Alex told me that the hardest part of the visit was not being able to make eye contact with Chris!)  We made small talk and Alex read the card he had made to Chris who seemed to listen patiently.  The nurse giggled when he finished:  “Roses are red.  Violets are blue.  I hope you feel better and I’ll bet you do too.”  (100% Alex!)

HPIM1723HPIM1724

The nurse asked Chris if his hip was still hurting and he nodded.  She explained to both of us that he had just had Tylenol and that it would take 5-10 minutes for it to kick in.  Chris grabbed my hand and whispered that it still hurt.  I looked at the nurse questioningly, not knowing what I should do and she told me to just give it a few minutes…

The boys told him that we ran in the run for Chris and all the events that have been held at the elementary school in his honour.

Chris held and rubbed my hand and told me that he couldn’t see out his window… wanted to go outside…  wanted to go home…  I told him that he’s come so far already and he said, “It doesn’t feel like it.”

At this point, Evan told me that he felt that he felt like he was going to faint.  I took a look at him and he was ghostly white.  I got him to sit down in the chair and put his head between his legs.  At the same time, I got Alex to busy himself signing the sign-in sheet.  I continued to talk with Chris and hold his hand.  Evan looked worse & worse, and started stripping off his clothes.  I asked him if he thought he’d be sick and he told me he wasn’t sure.  I asked him if he could get out into the hall.  He went into the hall and lay down on the floor outside Chris’ door.  (Evan fainted in music class in Gr. 2 and has a phobia about it happening again.  His doctor told him that if he feels like that’s going to happen, to get his head low to the ground.  He took that literally and wouldn’t get off the floor in the hall.)  I went to the nurses’ station (thank heavens it was close!) and asked if they had a basin in case he threw up.  They came and helped me get him up & onto the couch in the patient lounge next to Chris’ room with a cold washcloth on his head.  The reassured him that he had done the right thing if he was in school, but that they were there to help him and he would be okay.  The nurses there really are wonderful!

Meanwhile, I went back into Chris’ room where Alex was trying to make small talk.  I explained to Chris that Evan had been light-headed and went to lie down.  Chris told me that he hoped Evan would feel better and asked me where Sarah was?  I explained that we had come to Halifax because Alex had an eye appointment at the IWK and that Sarah was at preschool with Ms. Ellen, but that she had made him a card.  Chris asked about Evan again, so I went back to check on him.  He was starting to feel better (he’d been overwhelmed, I think) and we both went into the room together so that Chris could see that he was okay.  Evan was able to hold Chris’ hand and we all told him that we loved him.  We told him that we’d come back to see him again.  I said that we knew he was tired and that we were going to go so that he could have a rest.

He took my hand, and very clearly thanked us for coming; his eyes made an effort to try to find the boys.

When we got outside the hospital, Evan very clearly came back to life.  I teased him that he’ll never be a doctor and he very quickly agreed – he wants to be a cartographer and thinks that’s a much less stressful job!  Surprisingly, they both felt that it was a good visit and that Chris looked “better than they’d expected.”  They both had been afraid he’d be bed-ridden.  They were both fascinated by the IV in his arm that wasn’t hooked up to anything.  His hair was shorter than they remembered and his beard surprised them.  They didn’t mention anything about his left side or the fact that his emotions aren’t easily read through his face; just Alex’s comment about the lack of eye contact and he was further away than Evan & I were.  All three of us had held his hand and he rubbed them furiously!

On the way home, they asked if Chris was like Jesus because he had died and came back to life?!  I, shocked for a moment, replied that he had never actually died, but it was certainly a miracle that we were able to see him & communicate with him today after all he’d been through.

At bedtime as always, more emotions came out.  When I was tucking him in, Alex was upset because he can’t communicate what he feels about Chris without crying.  I explained that there is nothing to be ashamed of when you care about someone so much that it makes you cry…  I asked him if he remembered that Daddy & I had cried when we thought that Chris was going to die?  They did and I think that gave them permission to be upset.  The first few times I read Gwen’s journal, I couldn’t speak about it without being brought to tears.  Alex wanted Chris to know that he hopes he gets better soon; he just wasn’t able to say that out loud today.

He also wanted to tell Chris a joke, but wasn’t able to get it out:

Knock knock!

Who’s there?

Needle.

Needle who?

Needle little sympathy?

Gwen told me that she’d tell Chris that joke when she’s with him today and will make sure Chris knows it was Alex!

When he was upset last night, I told Alex that he & Chris have more in common than the rest of us do.  Alex has been on a marathon of his own these past five-and-a-half years, trying to retrain his brain to use his right eye.  We don’t often look back, but when we first started the patching process, Alex was legally blind.  He qualified for special education funding at school and we even had to buy him a sippy-cup to drink from because he couldn’t find his dishes on the table and kept knocking his cup over.  In preschool, he had to be partners with his teacher in gym so he wouldn’t get hurt.  I had to go to the school on Alex’s first day of Primary because he had fallen and scraped both knees when he couldn’t tell where the playground stopped and the pavement started.

It seems like a lifetime ago.

Alex’s vision isn’t perfect now and it never will be; it’s normal for him though.  Chris will be struggling and healing from now on and although he’ll never be perfect, we know that he’ll improve towards a new normal more than he is now.  There will always be bumps in the road and some days will be better than others, but he’ll get there.  Just like Alex will never be able to see a movie in 3-D, there are things that Chris won’t be able to do either and that will be frustrating.

Alex’s finish line is in sight.  He’s run his race and is almost at the end.  There were some days we didn’t think he’d ever be off the patch, wearing his full prescription, looking at us with a straight eye or be able to go more than four weeks without a trip to the IWK, and here we are!

Chris, however, is still at the beginning of his journey and that finish line is still off in the distance.

Alex can now empathize with Chris even more and has asked when he can go to visit him again…

You can follow our friend Chris’ story at:  http://marathon-of-hope.blogspot.com/

Alex had his monthly eye appointment this afternoon and left with some great news!  The atropine drop & plaino lens have been working and his vision is back up to 20/40!  (His last appointment results can be found by clicking: here).

This means he’s now back off the drops, but will keep the plaino lens for the next four weeks, which is the equivalent of part-time patching.

We now know that his eye will go back to 20/40 when forced to work.  They feel his vision will probably sit around the 20/50 line, but should anything happen to his stronger eye, his brain does know how to make the weaker one see at a 20/40.  They are happy with this, especially considering how far he has come since we started.

At this point, I don’t think he really cares about what line he’s made it to; he’s just happy to be off the drop again!

What are the chances?

July 5, 2009

Sarah had a major wipe-out on her face while racing with Evan last week, and scratched the lenses of her glasses.  Luckily, we had put lenses with her prescription in her older pair so we would have those as a “spare” since she can’t bear to be without her glasses!

Last night, when I bent down to give her a hug and a kiss while tucking her in for the night, I felt a snap and discovered that the frame of her “spare” glasses is now broken!  I offered her her baby glasses to wear, but the prescription is too weak and they are too small on her ears.  I’m hoping I’ll be able to find an optician that is open on Sunday today to solder the frames, otherwise it could prove to be a very long day!