We have appointments for Feb and May with the eye hospital through already.
Tuesday, 14 January 2014
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.
Wednesday, 1 January 2014
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.
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.
Saturday, 10 August 2013
Letter from GOSH
I'll take a copy of this to our next eye appointment at Sutton Eye Hospital to make sure so we get the squint issue properly checked/confirmed.
Thursday, 8 August 2013
Post-Op Appointment on 1 August
Last week, Thurs 1st August, was our first and only post-op appointment at Great Ormond Street Hospital (GOSH), London since Kate's frontal orbital remodelling surgery for left-sided uni coronal craniosynostosis (cranio surgery) on 17th April 2013.
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
The latest is one of my latest favourite pics of Kate, happy as ever, with her two big dimples, gappy teeth and one curl on top of her head. She is so cute & funny, she makes us unbelieveably happy.
Wendy Ager
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
 |
| Kate, April 2013 |
 |
| Day 2 (I think) post surgery - 19 April 2013 |
 |
| Kate, July 2013 |
Wendy Ager
Friday, 28 June 2013
Letter from eye hospital
"Dear Dr
It was very nice to see Kate today. She has had cranial advancement from which she has recovered extremely well.
From the eye point of view, we have no concerns today and all looks healthy. We will be reassessing her again in the Eye Clinic in 6 months.
Kind regards,
XXX
Consultant Ophthalmic Surgeon"
Saturday, 15 June 2013
Post surgery Eye Appointment
We saw the ophthalmologists and consultant this Thurs, 13th June 2013, at our local eye hospital.
I mentioned the squint and first the lady who did all the basic tests said she sees no squint. This was extremely good to hear. Kate being able to talk a lot more now was able to be tested better than before as she could name all the things they were holding up for her to see this time. She's now 20 mths old.
By the time we saw the consultant Kate had had enough of waiting. Me too! It was difficult for them to examine the back of here eyes etc as she didn't like them (one man & lady) at all. Crying isnt a good 'mode' to be in for an eye examination! I had been prepared as we've waited a long time there before, but she was hungry and she didn't like their lights or headgear!!
A chocolate roll helped & the consultant got to see what she wanted in the end and said there's no sign of any problems, pressure or anything. She seemed happy with everything.
She thought Kate looked remarkably good after her surgery and said that the darkness under her eyes will continue to fade, it's just a very sensitive and translucent bit of skin.
We will have a follow-up appointment with them in 6 months.
Wednesday, 5 June 2013
5th June, 7 weeks post-op
Just a quick post to say Kate still has very slight dark marks under her eyes still but they are fading.
The scab of her scar is beginning to come off in bits with the stitches and the skin looks great, though you can see through it a dark line, that I think is where you can see where the bone was cut - or maybe it is just the scar. It's hard to tell when they hardly shaved off any of her hair. I can't really see!
We have her eye appointment next Thursday. This is with the original Opthalmologist department at our local hospital, Sutton Eye Hospital. We'll see the consultant that originally referred us to Great Ormond Street before we knew she had Craniosynostosis. Her squint looks much less than before when I've posted, but I'm keen to discuss what might happen and how this will be dealt with if it doesn't correct itself.
I've noticed since our 5 year old's class at school had vision checks that a few have now got glasses. One Mum I spoke to yesterday said it's because her daughter has a lazy eye (similar to, or can cause a squint) and they're doing glasses before patching. The squint operation isn't anything major but it is something I'd like to avoid, obviously!
The scab of her scar is beginning to come off in bits with the stitches and the skin looks great, though you can see through it a dark line, that I think is where you can see where the bone was cut - or maybe it is just the scar. It's hard to tell when they hardly shaved off any of her hair. I can't really see!
We have her eye appointment next Thursday. This is with the original Opthalmologist department at our local hospital, Sutton Eye Hospital. We'll see the consultant that originally referred us to Great Ormond Street before we knew she had Craniosynostosis. Her squint looks much less than before when I've posted, but I'm keen to discuss what might happen and how this will be dealt with if it doesn't correct itself.
I've noticed since our 5 year old's class at school had vision checks that a few have now got glasses. One Mum I spoke to yesterday said it's because her daughter has a lazy eye (similar to, or can cause a squint) and they're doing glasses before patching. The squint operation isn't anything major but it is something I'd like to avoid, obviously!
I'll post again when we've had our appointment next week at the eye hospital.
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