Eye appt + Consultant

Yesterday we went to Sutton Eye Hospital for a check- up. Kate is now 2 1/2 and it's over a year since her operation (frontal orbital remodelling) at GOSH for simple unilateral left coronal craniosynostosis. 

Again, Kate wouldn't let the opthalmologist patch her eye but they (we had a student/ trainee in as well) were successful with glasses that have blacked-out one side, then another pair with the other.  

After the prism test, the lady mentioned to the trainee a slight exphoria (tendency of one eye to deviate outward) but that it recovered it very quickly.  

Kate seemed to be slightly faster to see the long-distant pictures quicker with HER left eye than the other and they said the consultant would look into that after she'd had the drops.  The rest of the tests I've assumed we're within a normal range & not commented on. 

I wasn't sure how she'd be with having drops at this age & couldn't remember the last time they did that, must have been 6 mths ago or longer. Anyway, she wasn't too bad & the consultant said she couldn't see any reason for the slight difference between eyes. Her focus appears to be the same in both eyes. 

I asked about the likelihood of future problems with Cranio cases, and she said that any eye problems would normally have presented themselves by now. I pushed for more and she just said that on a scale of 1 to 10 Kate's a 1 on her level of concern. 

They'll still keep checking though. Next appt is in 4 months, Sept 2014, and they'll do the other eye either with patching or glasses first next time. I think to see if she just 'appeared' to see the pictures faster with the second eye because she knew what they were and had seen then before. 

So, all this is all good from my point of view. Still no sign of any eye problems. 

Here's a recent photo of the girls, now 6 and 2 1/2. 

Any questions from you, especially if you're following because you're on a similar journey, please do just get in touch.  Wendy 

Letter above dated 29th May 2014

A year on...

It's a year ago since Kate's operation & it's only the date that is a reminder. 

You wouldn't know, although today Kate asked for a pony tail & I can easily see her scar when her hair is up at the moment.  I can see the slight assymetry in her face but she's a darling & most people say they don't or can't see it. 

We had a lovely day out today as it was a warm day & Daddy and sister are off work/school for Easter.  

Our next eye hospital appoiment (we go every 3 months) is with the Consultant in May. 

Letter from eye hospital to GOSH

Just received this week a copy of a letter from the consultant at the eye hospital to Dr Britto, the consultant & one of Kate's surgeons at Great Ormond Street. 

We have appointments for Feb and May with the eye hospital through already. 

Eye Appointment, 2 year check & general update

Recap

Kate was born 13 Oct 2011 and after quite a few appointments with various people she was diagnosed in Nov 2012 at Great Ormond Street Hospital (GOSH), London with left unicoronal craniosynostosis - premature fusion of the coronal suture of a skull bone - and had the required fronto orbital remodelling surgery to correct this condition at GOSH on 17th April 2013.  She was 18 months old.  The surgery was basically taking the skull apart right across the top of her head (ear to ear) and undoing the fused bone and reshaping her forehead and eye socket/s.  The surgery was about 4 hours and we were in GOSH for 5 long days for recovery.


I wanted to share these pictures, especially for those parents/carers following this blog who are/will be/have gone through something similar.  Though we were amazed at the tiny incision and distinct lack of hair removal across her skull after the surgery, this has widened as she has grown and is becoming actually more apparent, though her hair is also growing and thickening.

Also, I wanted parents to be aware, that she still had large bits of scab still attached until November and a couple of smaller bits have only just come off - 7/8 months post-surgery!

Eye Appointment

In December 2013 Kate had appointment at the local eye Hospital in Sutton for the eye check with optometrist and with the Consultant, the one who originally referred us to GOSH way back in 2012.

This time, as her speech has developed a lot (she was 2 in October) she was able to do even more tests - naming pictures & pointing out holograms etc with the Optometrist.  She totally refused to do any kind of patching, to test her individual eyes though.  

I showed the letter from the surgeon from GOSH who had said that although it had been reported by me that a squint had been ruled out, that this really should be confirmed as most cases of unicoronal craniosynostosis have some excycloroation of the globe (rotation of eye/socket).  The optometrist talked to me about this and said that Kate's very slight and not at all worrying (in fact her own is worse and not corrected at al) tendency is for one of her eyes to drift outwards.  Most people don't have dead straight eyes, like most people don't have 20:20 vision, and that it is nothing to worry about.

Most pleasing was that she played ball with the consultant who, this time, was able to check all the parts at the back of the eye with her lights and weird head-gear!  She was unable to see anything last time and had a good look and confirmed that she was completely happy with what she had seen and that check-ups will continue because of her growth at 3 months for general tests and 6 months for both her and the ophthalmologists.   Again, I showed her the letter from GOSH about the squint issue and she reassured me that this seems to not be the case, that Kate doesn't have a squint and repeated what the other lady had said.  

We have appointments already through for February and May 2014 at the Eye Hospital (Sutton, Surrey).



Normal 2 year check

I also got a letter to have Kate's normal 2 year check in December.   When we walked in Kate immediately took to playing and interacting with the toys laid out and, I got the impression, immediately ticked all the boxes for the lady we saw as to her abilities!   I took all the consultant letters off the Red Book and realised that that meant the lady would be blissfully unaware of her surgery and condition.   There is NOTHING in her red baby record book about her craniosynostosis!   So I had to explain all of that to her.   She was amazed at the scar and surgery and had not heard of it before.

A New Year - 2014

Last night, whilst brushing Kate's teeth, I got that reminder.  Kate's face is still not totally straight and it's normally only then, when looking at her in the mirror I see it clearly.  Others don't notice and normally looking at her straight I don't either but it is there, the asymmetry.  Nikki, her older sister, has commented on it too when looking at her in a mirror.

Today is New Year's day 2014 and it's such a different new year for me.  Last year we didn't go out, I think I was feeling ill and Nikki had chickenpox!  I wrote my review of 2012 on my business blog.  I didn't mention Kate's condition in that as we were keeping it private at that time.   This year, I've spent the whole day recovering from our fun evening with friends, thanks to my Mum & Dad for babysitting and those good friends for their company, support and more over the last year.  I spent quite a lot of time with my girls on the sofa today and Nikki declared it a special hugging day.  What a lovely way to spend the first day of 2014.

If you have any questions at all, please don't hesitate to contact me directly in any way from my contact page.