Kool Dudes - Me and Uncle Kevin
Cousin Laura trying to hide from the camera
Sunday, 6 November 2011
Friday, 23 September 2011
23rd September - EUA day
Today I'm due for another examination under anesthetic to see how my eyes are doing pressure-wise and if the valve in my right eye is still open.
Tuesday, 23 August 2011
23rd August - Operation day 3
Today I had another operation on my right eye. Everything went well as usual thankfully.
Fingers and toes crossed (though I've not learnt how to do either yet) that my eye valve doesn't heal over the hole.
Fingers and toes crossed (though I've not learnt how to do either yet) that my eye valve doesn't heal over the hole.
Friday, 29 July 2011
29th July 2011
Today I had another examination under anaesthetic to check on my eye pressures. My left eye is fine but my right eye is going to need operating on again as the proceedure done back in April has now healed and blocked the valve again.
My next op will be sometime in August.
My next op will be sometime in August.
Sunday, 24 July 2011
Sunday, 5 June 2011
Weight check
Jusrt in case anyone is interested, I now weigh 7.2kg which is 15lb 13 in old money!! Only on the 2nd centile but good enough for my parents for now!
Also forgot to mention that I met another boy with CG at the hospital. He lives in Leeds but didn't get diagnosed till after his 1st birthday. Please think of Archie as he has had 2 ops now and needs his first doing again and has stitches in his eye- ouch.
Also forgot to mention that I met another boy with CG at the hospital. He lives in Leeds but didn't get diagnosed till after his 1st birthday. Please think of Archie as he has had 2 ops now and needs his first doing again and has stitches in his eye- ouch.
Friday, 3 June 2011
Anaesthetic - pah!
Well that was certainly an interesting experience! My EUA- examination under anaesthetic- was supposed to be only under gas anaesthetic as i'm so difficult to canulise(?) but eye doc wasn't happy because of it giving false pressure readings.
So I was given oral meds for sedation......an hr and half later I decided to give in and fall asleep ..... for half an hr!! Then was topped up with midazolam which didn't work so they ended up using a smaller dose of the gas to put me under anyway. by which time we'd been at the hosp 6hrs and I was starving hungry- so was mummy. (Daddy was at home with Luke as he has a bad cold- daddy that is...not Luke)
The good news is- my pressure readings were fine no drops required . I came round really quickly and had 9oz of milk. Mummy found out that some sedatives have the opposite effect - it's called paradoxical effect!! Everyone at the hospital was certainly amazed that I managed to stay awake after 2 lots of sedation.
Next stop orthoptics and optometry!! which apparently means i get tested to see if i need glasses.
All this and it was my big brother's 3rd birthday today. Never a dull moment in the Doveston household!!
So I was given oral meds for sedation......an hr and half later I decided to give in and fall asleep ..... for half an hr!! Then was topped up with midazolam which didn't work so they ended up using a smaller dose of the gas to put me under anyway. by which time we'd been at the hosp 6hrs and I was starving hungry- so was mummy. (Daddy was at home with Luke as he has a bad cold- daddy that is...not Luke)
The good news is- my pressure readings were fine no drops required . I came round really quickly and had 9oz of milk. Mummy found out that some sedatives have the opposite effect - it's called paradoxical effect!! Everyone at the hospital was certainly amazed that I managed to stay awake after 2 lots of sedation.
Next stop orthoptics and optometry!! which apparently means i get tested to see if i need glasses.
All this and it was my big brother's 3rd birthday today. Never a dull moment in the Doveston household!!
Wednesday, 1 June 2011
Stirling Moss...who's he??
Everyone i've seen recently is mightily pleased with my progress.
I can now crawl (like lightning my mummy says), I am standing whenever humanly possible and even trying to walk. I'm still not keen on laying on my back (understatement) and prefer to be on my tummy rather than sitting up.
I am now eating proper food although it's still mush. I have tried finger food but not keen yet. I'm also resisting using a cup but I have had a lot of change lately.
I still hate bright light but I gather that mummy has ordered a cover for the buggy that hopefully will help with that so i can enjoy the great outdoors.
Next hurdle is my EUA ( examination under anaesthetic) on Friday where they will check and see how my eyes are doing after my ops.
Oh and I've got 2 teeth!! Is there no stopping me???? ;-)
I can now crawl (like lightning my mummy says), I am standing whenever humanly possible and even trying to walk. I'm still not keen on laying on my back (understatement) and prefer to be on my tummy rather than sitting up.
I am now eating proper food although it's still mush. I have tried finger food but not keen yet. I'm also resisting using a cup but I have had a lot of change lately.
I still hate bright light but I gather that mummy has ordered a cover for the buggy that hopefully will help with that so i can enjoy the great outdoors.
Next hurdle is my EUA ( examination under anaesthetic) on Friday where they will check and see how my eyes are doing after my ops.
Oh and I've got 2 teeth!! Is there no stopping me???? ;-)
Update and then some!
Well mummy worked out that i've had 19 appointments since December and that doesn't count all the times i was taken to the local doctor!
I've met 11 different professionals- pediatrician, 2 pediatric opthalmologists, dietician, occupational therapist, physiotherapist, 2 speech and language ladies, 2 ladies from the Visual Impairment team and my health visitor. Wow i'm popular!!
I've met 11 different professionals- pediatrician, 2 pediatric opthalmologists, dietician, occupational therapist, physiotherapist, 2 speech and language ladies, 2 ladies from the Visual Impairment team and my health visitor. Wow i'm popular!!
Thursday, 24 March 2011
Post Op news
After my first eye operation I am positively perky and my mum swears that I am able to see far more now. Bring on the next eye op if that is the case!
The eye operated on looks almost half the size of my other eye which is still waiting for an op. Goes to show that mums know best about their babies health!
The eye operated on looks almost half the size of my other eye which is still waiting for an op. Goes to show that mums know best about their babies health!
Tuesday, 22 March 2011
22nd March 2011
Big day today! My first operation to help with my Glaucoma. The examination of both eyes went well as did the operation on my left eye. The surgeon was very optimistic afterwards.
There appears to be no damage to the cornea and therefore my sight will not be affected as badly as first thought. I probably will still have sight problems though but only time will tell as to how bad.
It has also been positive news about the rear of my eyes and we should hopefully have a better understanding after Fridays post op appointment.
There appears to be no damage to the cornea and therefore my sight will not be affected as badly as first thought. I probably will still have sight problems though but only time will tell as to how bad.
It has also been positive news about the rear of my eyes and we should hopefully have a better understanding after Fridays post op appointment.
Saturday, 12 March 2011
Hospital dates
My operation was cancelled as I caught a cold which has gone to my chest making it dangerous for me to be put under anethesia.
The eye specialist at Calderdale has rung and arranged for me to see him 17th March and has provisionally booked me in for my first op on the 22nd March. Whether something was lost in translation or not he upset my Mummy by saying that I may lose what sight I have left if they don't operate soon. Strange as they couldn't find a full crew for the op to go ahead last week despite the importance!
Today we received a letter from the LGI asking for my parents to get in touch with my details so they can book me in for a MRI scan which is to see if there are any other problems in my head.
The eye specialist at Calderdale has rung and arranged for me to see him 17th March and has provisionally booked me in for my first op on the 22nd March. Whether something was lost in translation or not he upset my Mummy by saying that I may lose what sight I have left if they don't operate soon. Strange as they couldn't find a full crew for the op to go ahead last week despite the importance!
Today we received a letter from the LGI asking for my parents to get in touch with my details so they can book me in for a MRI scan which is to see if there are any other problems in my head.
Saturday, 5 March 2011
Eye Nystagmus
Here is some video footage of me just over 6 months old showing my large corneas and my eye nystagmus.
Admitted and then not
After seeing the Opthalmological Paediatrician (that's easy for me to say!) at Calderdale Royal I was admitted into hospital and put on different medication. After a while day on the new meds I have improved greatly showing that I must have been in quite a bit of discomfort for the past few months.
I am now spending more awake time playing and exploring though I'm not impressed when my meds are being administered!
As a result of the improvement I was allowed home for the weekend though I need to return on Monday evening so I'm available for my pre-op checks. My first operation is on Tuesday 8th March 2011.
I am now spending more awake time playing and exploring though I'm not impressed when my meds are being administered!
As a result of the improvement I was allowed home for the weekend though I need to return on Monday evening so I'm available for my pre-op checks. My first operation is on Tuesday 8th March 2011.
Wednesday, 2 March 2011
Calderdale
Found out today that there isn't room for me at Manchester so I'm being taken to Calderdale Royal tomorrow.
1st March 2011
Second visit to Airedale Hospital today to see the Pediatrician who managed to get some blood for the important tests required. Though not enough for all the tests so I will need to go back sometime soon.
Friday, 25 February 2011
6 months
To celebrate being 6 months old I had a visit to Airedale Hospital and the paediatrician.
The visit was brought forward thanks to the insistence of the Health Visitor who was somewhat concerned about my large eyes.
The paediatrician referred me to an eye specialist who took one look at my eyes and said I have congenital glaucoma and will need an operation on both my eyes to help correct them. I am waiting for an appointment to see the specialists at Manchester Eye Hospital which should be next week.
I also have to have several blood tests, a urine test, a MRI scan and a Barium Swallow.
The visit was brought forward thanks to the insistence of the Health Visitor who was somewhat concerned about my large eyes.
The paediatrician referred me to an eye specialist who took one look at my eyes and said I have congenital glaucoma and will need an operation on both my eyes to help correct them. I am waiting for an appointment to see the specialists at Manchester Eye Hospital which should be next week.
I also have to have several blood tests, a urine test, a MRI scan and a Barium Swallow.
Monday, 14 February 2011
Friday, 28 January 2011
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