Getting a toddler to wear glasses - part 1

So following on from my last post, we decided to give the glasses a go today as Aaron is in a decent mood! I surprised him as he was playing with his cars/garage, so he was fairly distracted and he didn't fight me, despite my fumbling around with the straps.

We made it through several runs of driving the cars up and down the ramps, and a few pages of "What the Ladybird Saw Next" before Aaron decided to start messing with his new specs. It was about five minutes in total, which, after reading about some other parents' experiences, ain't bad ;-)

360 trabeculotomy - 14 months later

Posting this two weeks late but Aaron had his follow up visit at Moorfields Eye Hospital, Thursday, 7 December and spoiler alert but I am happy to say that 14 months on, his intraocular pressures are still very well controlled!

It was a bit of a production getting up to London as the appointment was in the middle of lunchtime/nap time, plus I was dragging a dress for a black-tie gala later that evening (which ended up hanging rather neatly off of the back of the buggy)! I should also mention that we had 20-mph winds and rain that was coming down in sheets. We were very lucky that our train ran as scheduled (the three prior had been cancelled).

Once we were at the hospital, we went through our usual visit to the orthoptist. I secretly hate this part. Aaron gets shown a bunch of beige cards with very faint drawings of animals on them, which he never seems interested in and I am never sure how he is supposed to react. I basically sit there trying to contain my impatience (I hate not knowing what's going on) until the orthoptist says everything's fine. This latest visit was no exception, except the usual 'Aaron's eyes are developing fine' was then followed by 'Has Aaron ever had a glasses test? No? Hmm, ok.' Gah.

Next we went in to see Mr. Brookes, who was delighted at the clarity of Aaron's corneas and confirmed that the intraocular pressures are stable at 13 and 14. Great news! The 360 trabeculotomy continues to deliver successful results!

Mr. Brookes then mentioned he would like to dilate Aaron's eyes so that he could get a better look at the nerves...and so that we could go see the optician for a glasses test. Aaron sat remarkably still during the eye drops (good thing too, because I was not looking forward to pinning down a kicking, squawking toddler) and we had about an hour wait to see the optician. And guess what, kiddo needs glasses.

It wasn't a surprise (I knew we'd be leaving with specs when the orthoptist said 'Hmm'), I have always known Aaron would need glasses at some point and I KNOW we are lucky he can see at all. (I have to force myself to remember it sometimes, because Aaron seems so normal and you'd never know he has congenital glaucoma unless you hold him on his back under a bright light, but I do know how truly, incredibly lucky we are.)

However, because the congenital glaucoma is now so well managed, I am back to lamenting day-to-day about 'normal' mom problems: balancing family/career, trying to survive teething, tantrums, etc. Some mornings we barely get out the door, so adding glasses into the routine just sounds like a bloody nightmare. I feel lame-o admitting that, but it's the truth.

Moving forward and trying to be optimistic about things, we at least have a lengthy Christmas break now, where all three of us are home and Adam and I can try to introduce Aaron's new accessory slowly! I am reading up on the best ways to go about this, am guessing there will be tears and a struggle for Alpha dog. But if we can survive a 360 trabeculotomy with a 5-month old, we will survive glasses, surely. Watch this space ;-)

360 degree trabeculotomy success - one year later

Today's been a Saturday like any other. I made pancakes for my husband and 17-month old son, I went for a run, we took a family outing to the music store, and at the end of the day there are books, toys and odd bits of breadsticks strewn from one end of our house to the other. It's 19:45 and I'm knackered.

But a year ago today I was wishing for these types of days, where our worries would be centred around how to entertain a toddler vs. whether he'd lose his vision in just the one eye or would it be both.

Today is the one-year anniversary of Aaron's 360 degree trabeculotomy, which for all intents and purposes, has been a success and allows us to have our crazy but ordinary life. Aaron's eyes have gone from cloudy, flat, almost colourless orbs to wild, dancing blueberries, curious, mischievous, missing nothing. Clear.

Glaucoma free eyes 

A year on it is easy to forget that congenital glaucoma is even a thing. We are on bi-annual checkups with Mr. Brookes at Moorfields (as compared to monthly at first) and Aaron seems to have no idea, not of the fact that he was one of the first to have this revolutionary surgery nor of the fact that he's quite famous now, having been featured in everything from case studies to press articles.

Ok it's possible he might think he's a little bit famous

I started this blog as a way to share our journey and what we learned along the way with family, friends and strangers. I've kept it focused to the very niche topic of congenital glaucoma.

I'm never going to have hundreds of thousands of followers and that's ok. It's just that I remember telling Mr. Brookes once that there were NO positive blogs out there about congenital glaucoma and he replied that it's likely because once it's treated, there's not much to say - you go on with life. And that's true, we have gone on and I post once in a blue moon.

But I also remember the desperate feeling I had when I saw NO positive blogs, or saw the blogs that sounded like things had gone mildly ok for the kid with congenital glaucoma and then the posts just...stopped. And I was left wondering 'WHAT HAPPENED NEXT?' (I've never been a 'glass half full' person and having a baby who was 1 in 10,000 hasn't exactly improved that, although I'm working on it. The fact that we have a congenital glaucoma baby whose vision is now 'good enough that he could drive' is definitely something to hang onto).

I digress.

I will keep posting, even if one person per month reads it (even if that's sometimes my aunt), because I've had a few people get in touch with me to find out more, I've seen traffic come in from Russia, China, Sweden, the United States. Other 1 in 10,000's. Other scared parents. I hope this blog continues to help them. And maybe someday it will help Aaron, if he ever wants to know the ins and outs of what happened, how lucky he was and is, and why even ordinary Saturdays are ones to be grateful for.

360 degree trabeculotomy - continued success 9 months on

Another good visit to Richard Desmond Children's Eye Centre at Moorfields this past week. Aaron's last appointment was in the end of April, so this was the longest we've gone with no eye exams since he was first diagnosed with congenital glaucoma last October. Since the last visit, Aaron's vision has been continually improving and we've noticed things like:

• His squint is improving. When he's really tired one eye still goes a bit lazy but in general Aaron can focus more with both eyes and they are less 'rolly' for lack of a technical description 
• Less sensitivity to light. We can push Aaron in his buggy with no cover on him, he goes on the swings and refuses to wear a hat or glasses (lots of sun cream) but always seems fine. Less squinty, less uncomfortable. And we can change him with overhead lights on.

All good things and really positive to see that the 360 degree trabeculotomy results continue to hold. At 14.5 months, Aaron's the oldest person to have had the surgery so we don't have a lot to benchmark against but Mr. Brookes said Aaron's vision is good enough that he could drive a car (if only he could reach the pedals).

With the exception of the checkups at Moorfields, congenital glaucoma isn't something we think tons about these days. That said, we try not to take for granted how lucky we are. All the cogs were really in place for little Aaron  - where we were initially referred for the squint, where we were referred upon the congenital glaucoma diagnosis, encountering someone like Mr. Brookes who was willing and able to perform the 360 degree trabeculotomy, and just the sheer fact that Aaron's Schlemm's canals were fully formed in both eyes. We are truly blessed that we are now having conversations about normal toddler things vs continuous hospital appointments, and likely more surgeries and EUAs, which is generally the case when one is diagnosed with congenital glaucoma.

So that's it for now. We go back to Moorfields in December to see Mr. Brookes and hopefully we will be reporting Mack more of the same!

Congenital glaucoma in the press

Aaron's story about his progress with congenital glaucoma and continued success following the 360 degree trabeculotomy was featured in the Daily Express yesterday:

http://www.express.co.uk/life-style/life/818788/Anniversary-Richard-Desmond-Children-Eye-Centre-Moorfields-Hospital

The Richard Desmond Eye Centre at Moorfields Hospital is the only facility in the UK to perform the 360 trabeculotomy, we feel very thankful for the good work they do there and that we were able to have Mr. John Brookes perform this procedure on Aaron!

Six months post 360 degree trabeculotomy

We had our checkup today for Aaron at the Richard Desmond Children's Eye Centre at Moorfields. It's been six months since he had his bilateral 360 degree trabeculotomies to manage his congenital glaucoma and so far, everything is looking great. I'm always afraid to say things like that, as if sharing good news is sure to jinx us, but his vision seems to be developing fine and his intraocular pressure is within the normal range (12 and 13). 

We don't have to go back for three months now, and the Fellow we saw said that if the news continues to be good, we can then push back to every 4-6 months and then...at some point Aaron could be discharged. We never even considered that was a possibility. Everything we had read about congenital glaucoma indicated lifelong care, but then everything we read was about cases managed with more traditional surgeries: goniotomy or a regular trabeculotomy. So it's pretty exciting news.

Lots of milestones around here lately, with the six month anniversary of the surgery and Aaron's first birthday next week. It's been a bit of a wild ride. The congenital glaucoma was a major scare, sending our five-month old baby in for revolutionary pediatric eye surgery (in both eyes) was scary, and then the constant worry that the surgery wouldn't work or would somehow reverse have been heavy loads to carry. And we don't have family close by so Adam and I have done the brunt of this on our own. 

With all of that said, we feel incredibly lucky right now. Lucky that it was a mild case of congenital glaucoma and that we caught it early, lucky that we found Mr. Brookes and Moorfields, and lucky that Aaron was a strong candidate for the 360 degree trabeculotomy. It's almost as if it all never happened and looking at Aaron, you wouldn't know he ever had anything wrong with him unless you really stare at his eyes (you can see a tiny bump where the scar is if you look very closely). He's quick to smile and laugh, he's pudgy and sweet and he loves to crawl, clap and climb stairs. Fingers crossed that Aaron's vision continues to develop normally and that the congenital glaucoma remains a distant memory.

Zika virus and congenital glaucoma

This article about the Zika virus potentially causing congenital glaucoma came up in my Google alerts and wanted to share:
http://health.usnews.com/health-care/articles/2017-04-18/zika-can-harm-babies-vision-too

Findings were originally published in the JAMA Ophthamology 14 April

TED Talk: Design with the Blind in Mind

I promised after the December EUA that I would post even if Aaron was doing well. Reality is that this is really hard, both because there's nothing to write about Aaron that's relevant for the blog (that's a good thing) and because the news articles that come up on Google are either about someone who's blind from congenital glaucoma or aren't really saying anything new (in my unprofessional opinion).

However, I came across an interesting TED Talk called Design with the Blind in Mind. (NB: Aaron's vision right now is great but if you've read my previous posts then you'll know I like to prepare for things going awry so I occasionally do research on what life is like with partial or complete vision loss).

The talk was especially interesting to me a) because it gave good perspective on what things could be like for someone who loses their sight later in life and b) because my husband and I both work in the design industry. The speaker, Chris Downey, talks about how thoughtful design is beneficial for everyone whether they have limited sight or not. I couldn't agree more. (Chris is an architect who lost his sight after successful removal of a brain tumour, btw.)

Link to the talk is here if you fancy watching.

Four months post 360 degree trabeculotomy - so far so good

Ok, so I don't want to jinx things here but we had a really good appointment yesterday at Moorfields. We haven't been in since Aaron's EUA in December and it's been a solid four months since the 360 degree trabeculotomy. For the most part have been really comfortable with how his vision seems to be progressing (save one scary weekend where he had a cold and we were convinced his pressure was going up again - we spoke to Mr. Brookes about this at the clinic and he said eye pressure actually can go up when you have a cold and that's normal).

We went through the standard Thursday clinic procedures, which started with a visit to the orthoptist to check Aaron's eye movement. She showed him a series of lightly coloured cards with animals and vehicles printed on them in a slightly lighter tint. Very different to the whiz bang brightly coloured toys he's used to playing with but he seemed to be tracking everything. She covered each of his eyes individually (which he disliked in equal measure) and did a few other tests before sending us back up to see Mr. Brookes. The waiting area for the clinic is full of toys, which Aaron is almost old enough to play with, but he was far more interested in the polished concrete pylons and the interesting textures. He spent a solid five minutes smacking these and then chased a newspaper up and down the bench. Who needs toys?!

When we were called, Aaron gave Mr. Brookes the serious stare down that is his standard (no one is exempt, not even me) and then broke into a grin. The appointment itself was pretty quick as Aaron's eyes are nice and clear, which is visible from a distance, and the pressure in his eyes came out as 11 in the left and 14 in the right. A bit higher than after the EUA but Mr. Brookes wasn't concerned. He did a few other tests on Aaron and we got to leave with no changes to the current plan - no eye drops, no patches. Thank goodness for that!

Next appointment is end of April and we'll see an optometrist then to assess whether Aaron is short sighted, etc. along with another visit to the orthoptist and Mr. Brookes.

So fingers crossed. I'm one of those 'plan for the worst, hope for the best' people and once you have something like congenital glaucoma happen to your child (seriously, 1 in 10,000 babies! how did we get here?) you just assume bad things might continue to happen. That said, I know how incredibly lucky we are that Aaron could have the 360 degree trabeculotomy in the first place. And Mr. Brookes said that to have this continued success this long after the surgery is a positive sign. Trying to focus on good things based on this so I'm going to keep picturing Aaron's face when he sees his first birthday cake in a few months :)

Happy New Year!

Unless you knew any better, you couldn't tell this kid has glaucoma. Aaron had a great first Christmas and New Year's, crawling after fairy lights, eating wrapping paper and trying to pull over Christmas trees. He seems to be able to spot the most dangerous thing in the room and goes after it with a speed you wouldn't think achievable for someone who's only recently learned forward mobility.

In all seriousness, Aaron's vision is really good. Following the 360 degree trabeculotomy in October and the subsequent EUA in December, we've noticed a few things:

He recovered very quickly from the EUA- the day immediately following he was completely fine, by the second day he was a little tired but that was it. I think Adam and I found the procedure more traumatic than he did.

His squint seems like it is starting to self correct? It's not gone but definitely looks better. The right eye also seems like it wobbles less. Guessing his brain has some re-wiring to do to adjust to the cleared corneas.

He is still sensitive to light if he is on his back or being too reclined (like in the car seat). Any other position he does pretty well and luckily it's fairly dim outside this time of year so walks outdoors are also manageable. We can bath him with the light on now although he still squints a bit. Same with changing him. He's not super keen on very bright fluorescent lights but really, who is?

His eyes themselves look great, nice and clear clear and as noted above, he is very observant. We took him to the GP last week for another issue and the GP remarked what good vision Aaron had (he kept following the light on the instrument she was using to check Aaron's ears).

Our next visit to Moorfields is in late February so we have almost two more months for Aaron's eyes to continue to improve!