This kid is such a mystery to me! We went out today and she was in the baby carrier. I had a sunhat and sunglasses for her instead of the usual buggy sunshade. She stuck her face straight up into the sky and peered at the sun from under the brim of her hat. I took her glasses off when she was asleep and when she woke, she wanted to stare at the sun again. I guess she was wondering what that big, pretty light, a long way away, was. So strange that she wasn't photophobic about it. It makes me wonder what sort of diagnosis we are heading towards.
Thursday, 22 April 2010
Sunday, 18 April 2010
Using my rods
I had a really interesting rod-related experience last night: I went into our darkened bedroom and was looking for something on the floor. I couldn't turn on a light because Charlotte was sleeping in there and there were lots of things lying around on the floor.
I saw three unfamiliar dark objects lying there and I was trying to work out what they were. I realised two were Emily's navy slippers and one was my navy eye mask. But when I looked directly at each object, it seemed to dissapear. I could see the outline but no detail. When I looked at a different object, the detail came back in my peripheral vision. The slippers have white pictures outlined on them so they were particularly obvious in losing their detail.
It was the first time that I have seen my own blind spot in rod vision. I spent quite a long time flicking my eyes between each of the three objects and noticing how the details dissapeared from my central vision and appeared only in my peripheral vision. It was frustating to have to try and see the object without looking at it. I wondered if that was because my brain is trained to look direct and Charlotte's eyes will train differently so that she is using her peripheral vision to look at details.
The light was also very dim which made it really difficult to see. I wonder if Charlotte will be able to use her rods more effectively in brighter lighting. Mine could only operate that fully when the lights were so low because otherwise my cones would have started working.
The whole exercise was very illuminating (pun intended), but also quite upsetting.
I saw three unfamiliar dark objects lying there and I was trying to work out what they were. I realised two were Emily's navy slippers and one was my navy eye mask. But when I looked directly at each object, it seemed to dissapear. I could see the outline but no detail. When I looked at a different object, the detail came back in my peripheral vision. The slippers have white pictures outlined on them so they were particularly obvious in losing their detail.
It was the first time that I have seen my own blind spot in rod vision. I spent quite a long time flicking my eyes between each of the three objects and noticing how the details dissapeared from my central vision and appeared only in my peripheral vision. It was frustating to have to try and see the object without looking at it. I wondered if that was because my brain is trained to look direct and Charlotte's eyes will train differently so that she is using her peripheral vision to look at details.
The light was also very dim which made it really difficult to see. I wonder if Charlotte will be able to use her rods more effectively in brighter lighting. Mine could only operate that fully when the lights were so low because otherwise my cones would have started working.
The whole exercise was very illuminating (pun intended), but also quite upsetting.
New accommodations
Ever since I was told that Charlotte would see better in dim lighting, I have realised that she is going to need her own bedroom. We are in a 2 bedroom flat and I was going to have the girls share the second bedroom. It is large enough and has a huge window with a Southerly outlook. It's a really lovely room. What a shame.
I've looked around at what is available in our neighbourhood, on our budget and it is pretty depressing. Everything with a garden is a basement flat and we would have to give up our gorgeous living room with its 12 foot ceilings.
We are now investigating building a basement level below our flat and putting bedrooms on that level with all the living areas on the ground floor. It is quite an exciting idea, but hugely daunting too. We had a preliminary meeting with the neighbours today and they were very guarded in their response. I have permission to contact the building company and have them around to discuss what is possible and get a quote. After that we have the hurdles of planning permission, finances and the neighbours.
But if it all comes together, it would be a great flat and we really can't imagine living in a better location than this one.
Little Charlie will have her own, very dark, basement level, North-facing bedroom. I want to make it a space where she can retreat if she feels like it is all too much for her, if the lights are too bright or if she has a headache. She can set up any special computer equipment or reading aids that she needs. I might be going overboard but I was thinking of painting the walls matte navy with one wall with navy and white wallpaper. The ceiling and furniture would be white, the carpet would be taupe and the bedlinen would be large stripes of navy and white. I would have a chandelier with lots of sparkly crystals (on a dimmer) and maybe a lamp the same. I'll have to check with people who only use their rods to be sure this would work for her but I think it's a pretty cool idea.
I've looked around at what is available in our neighbourhood, on our budget and it is pretty depressing. Everything with a garden is a basement flat and we would have to give up our gorgeous living room with its 12 foot ceilings.
We are now investigating building a basement level below our flat and putting bedrooms on that level with all the living areas on the ground floor. It is quite an exciting idea, but hugely daunting too. We had a preliminary meeting with the neighbours today and they were very guarded in their response. I have permission to contact the building company and have them around to discuss what is possible and get a quote. After that we have the hurdles of planning permission, finances and the neighbours.
But if it all comes together, it would be a great flat and we really can't imagine living in a better location than this one.
Little Charlie will have her own, very dark, basement level, North-facing bedroom. I want to make it a space where she can retreat if she feels like it is all too much for her, if the lights are too bright or if she has a headache. She can set up any special computer equipment or reading aids that she needs. I might be going overboard but I was thinking of painting the walls matte navy with one wall with navy and white wallpaper. The ceiling and furniture would be white, the carpet would be taupe and the bedlinen would be large stripes of navy and white. I would have a chandelier with lots of sparkly crystals (on a dimmer) and maybe a lamp the same. I'll have to check with people who only use their rods to be sure this would work for her but I think it's a pretty cool idea.
Friday, 16 April 2010
Reaching out
My conversation with Michael was great, very uplifting. He is a really positive guy with lots of energy and enthusiasm. It made me re-realise that this is not going to be the end of the world. I know it intellectually but I haven't really been living it. Thanks Michael for helping me enjoy my baby again!
Wednesday, 14 April 2010
Appointment frustrations
I vowed to keep on top of our appointment progress with this blog and it is the one thing I always neglect to do - report back on appointments and progress. So here goes:
Yesterday was terribly frustrating because I was trying to chase the appointment with the Ped Optometrist to whom we were referred over a month ago. She was on holiday, had to decide where to see us, blah, blah, blah. I have spoken to her office, they were going to chase the referral, I followed up yesterday, they had nothing, I went up the street and faxed them a copy (at a cost of £1!). I thought seeing Professor Cone would be difficult and this would be the easy one.
They phoned me back yesterday to say that they weren't going to see us until after we had seen Professor Cone. This is nuts to me because it has already been recommended that we talk about contact lenses and he is only going to say the same thing, in over a month's time and we will have to go through the whole waiting for an appointment process all over again. She will get something to cover her eyes three months later than she should have.
They said I can go back to our original referring consultant and have her write an individual referral to the Optometrist. So I've drafted a letter which I shall post tomorrow. So crazy, I wish I didn't have to run around after people all the time. It is so time consuming and energy sapping.
Today's scheduled "Charlotte's eyes" activity is a call with Michael From Colorado who has Cone Rod Dystrophy and has offered to chat to me. I'm kind of looking forward to it but nervous at the same time. I want information but I hate the way it makes me feel afterwards. Sort of brings it back to the forefront of my mind. I fear that is what I have done to another internet friend about her condition. I'm also feeling a bit shy. I'll report back later about our call.
Yesterday was terribly frustrating because I was trying to chase the appointment with the Ped Optometrist to whom we were referred over a month ago. She was on holiday, had to decide where to see us, blah, blah, blah. I have spoken to her office, they were going to chase the referral, I followed up yesterday, they had nothing, I went up the street and faxed them a copy (at a cost of £1!). I thought seeing Professor Cone would be difficult and this would be the easy one.
They phoned me back yesterday to say that they weren't going to see us until after we had seen Professor Cone. This is nuts to me because it has already been recommended that we talk about contact lenses and he is only going to say the same thing, in over a month's time and we will have to go through the whole waiting for an appointment process all over again. She will get something to cover her eyes three months later than she should have.
They said I can go back to our original referring consultant and have her write an individual referral to the Optometrist. So I've drafted a letter which I shall post tomorrow. So crazy, I wish I didn't have to run around after people all the time. It is so time consuming and energy sapping.
Today's scheduled "Charlotte's eyes" activity is a call with Michael From Colorado who has Cone Rod Dystrophy and has offered to chat to me. I'm kind of looking forward to it but nervous at the same time. I want information but I hate the way it makes me feel afterwards. Sort of brings it back to the forefront of my mind. I fear that is what I have done to another internet friend about her condition. I'm also feeling a bit shy. I'll report back later about our call.
Too much of a good thing
My parents have been here visiting and while it is great to have them around, their visits are always a bit of a mixed bag. I guess it is the same for most people with their parental visits. It is particularly difficult with Dad because his lifestyle is so different than ours. I realised that he has probably never experienced life with small children so close for such a long period of time. Even with his own children, he would have been working much of the time and only with us on weekends and holidays which are different.
I've been trying to do some fun things with them but I also feel like they are around to help me get our lives on track and feel under control. Having them around is great but it does add another layer of chaos and work to the day. I'm going to get under control by stopping making dinner every night. It is kind of like hosting a dinner party every night, without getting out the good china. They say they want to shop and cook so great, I'll let them and it is a load off my mind. I enjoy cooking but it is one more thing to get done each day. And get done early if I am using the crock pot, which I often am.
I've been trying to do some fun things with them but I also feel like they are around to help me get our lives on track and feel under control. Having them around is great but it does add another layer of chaos and work to the day. I'm going to get under control by stopping making dinner every night. It is kind of like hosting a dinner party every night, without getting out the good china. They say they want to shop and cook so great, I'll let them and it is a load off my mind. I enjoy cooking but it is one more thing to get done each day. And get done early if I am using the crock pot, which I often am.
Monday, 12 April 2010
Overcoming shyness
I'm feeling a bit shy these days but I have been reaching out to some people in the blind community. I have certainly benefitted greatly from doing so as they are wonderful, positive, warm people; grappling with their own demons. Finding such great role models for Charlotte is so important, to me right now, and to her later.
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