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.
Sunday 11 April 2010
My own baby
Charlotte's good developmental assessments have left me a bit shamefaced. I realise I have been listening to the internets too much, rather than looking at my own child. I have been reading far too much about various conditions (of which we still don’t know which one applies to Charlotte) and getting myself incredibly upset. Meanwhile, my lovely baby has just been getting on with the process of growing and developing and looking around. She’s saying to me, “Mum, I’m fine, look what I can do!”
This is so important because I really need to treat her like the individual she is. True of all children, particularly special needs. She will show me what she needs. I have been distracting myself by running around and getting appointments with anyone I can. It just feels more productive than doing nothing at all.
This is so important because I really need to treat her like the individual she is. True of all children, particularly special needs. She will show me what she needs. I have been distracting myself by running around and getting appointments with anyone I can. It just feels more productive than doing nothing at all.
Friday 9 April 2010
Appointment updates
I should be updating this blog about Charlotte’s appointments and progress a little more frequently. At the time I was getting this blog set up, I was posting a lot of archived angst. But we did have a flurry of appointments which I want to report on. (I didn’t want to make too many posts each day, I have been saving some of them to tantalise my readers – oh right, I don’t have any!)
Our most exciting upcoming appointment is with a man whom I’m going to refer to as “Professor Cone”. Apparently, he is the world expert on the genetics of retinal diseases, and has a particular interest in cones. Whoohoo! He is seeing us at the end of May. I am hopeful that we will have genetic testing to nail down Charlotte’s exact condition, that the results will be conclusive, that it won’t be progressive, that it won’t be too severe either. I’m thinking she might have Blue Cone Monochomatism; I’ll put that out there as my hope and see where we end up.
Martin is going to be away (golfing in Ireland) when we see Prof Cone, it’s a real shame. I phoned to try and reschedule and was offered 2 July so I am sticking with 21 May.
In the last two weeks, we have also seen a Developmental Paediatrician and a Paediatric Occupational Therapist. They have both evaluated her as developmentally normal for her age and I am delighted. I am feeling so much calmer about her condition. These reports, coupled with connecting with someone from my mummy listserv with a retinal disease, living a full and happy life, has been a wonderful boost. I feel like I am fully enjoying her again. Sure, she moves her head a bit funny some of the time, but she is lovely and smells gorgeous and is truly beautiful. I can’t wait for my parents to get here and see her for themselves and enjoy her too.
Our most exciting upcoming appointment is with a man whom I’m going to refer to as “Professor Cone”. Apparently, he is the world expert on the genetics of retinal diseases, and has a particular interest in cones. Whoohoo! He is seeing us at the end of May. I am hopeful that we will have genetic testing to nail down Charlotte’s exact condition, that the results will be conclusive, that it won’t be progressive, that it won’t be too severe either. I’m thinking she might have Blue Cone Monochomatism; I’ll put that out there as my hope and see where we end up.
Martin is going to be away (golfing in Ireland) when we see Prof Cone, it’s a real shame. I phoned to try and reschedule and was offered 2 July so I am sticking with 21 May.
In the last two weeks, we have also seen a Developmental Paediatrician and a Paediatric Occupational Therapist. They have both evaluated her as developmentally normal for her age and I am delighted. I am feeling so much calmer about her condition. These reports, coupled with connecting with someone from my mummy listserv with a retinal disease, living a full and happy life, has been a wonderful boost. I feel like I am fully enjoying her again. Sure, she moves her head a bit funny some of the time, but she is lovely and smells gorgeous and is truly beautiful. I can’t wait for my parents to get here and see her for themselves and enjoy her too.
Wednesday 7 April 2010
When fussy isn't about the eyes
Today was a fussy, fussy day. I don't know if she is teething or if she is feeling sick but it was fuss, fuss, fuss all day. Unless she was being carried around. I was going crazy but I had a lot of help and company today so it wasn't too bad.
I realised at the end of the day that I finally didn't immediately jump to thinking it was because of her vision that she was fussing. Usually, I think it is because it is too bright/she can't see/she has a headache. Today, I think she is probably teething.
My parents are arriving tonight, their plane has landed and I am awaiting their arrival right now. I am a bit nervous about their visit because I think we often have different expectations about what their visit should entail. We'll have to see. Emily is excited and it is great because we saw them so recently that she remembers almost everything about them.
I realised at the end of the day that I finally didn't immediately jump to thinking it was because of her vision that she was fussing. Usually, I think it is because it is too bright/she can't see/she has a headache. Today, I think she is probably teething.
My parents are arriving tonight, their plane has landed and I am awaiting their arrival right now. I am a bit nervous about their visit because I think we often have different expectations about what their visit should entail. We'll have to see. Emily is excited and it is great because we saw them so recently that she remembers almost everything about them.
Tuesday 6 April 2010
The rollercoaster
Why do I always feel down and depressed when mail about Charlotte comes in? I eagerly await referral letters and new appointment letters but then feel terrible when they arrive. Is it because the mail is a good distraction from her condition and gives me the feeling that I am doing something? Then when the mail comes and nothing changes, I go back to feeling helpless and useless.
Today, it was ridiculous, I got a consultation letter that I was in the room during the dictation of and I still felt sad afterwards. During the actual appointment, I felt good, positive. I don't know. Maybe today it was because it came on top of a playdate outing in a particularly sunny room which I felt was hard on Charlotte and she didn't enjoy it. I know this for sure because she nodded off to sleep during it. She does that when the lighting is too bright for her.
We are still waiting to see the Optometrist and I am hopeful that contact lenses will help Charlotte get the lighting to the optimal level for her. The woman is still on holiday.
I'm also feeling down about Emily's pigeon toes, I don't think that they are improving, it seems as though they are getting worse. Particularly when she has poor fitting shoes on like wellies or crocs, she walks as though she has a club foot. I'm going back to the GP and asking for an Orthopedic referral.
Monday 5 April 2010
Creatures with rods: nocturnal house at the zoo
I did go to the zoo with my husband and children and I am very glad that I did. We had a lovely day together. Even better that the weather was gloomy and raining! We must be the only family in Britain who don't mind cloudy days and want a North-facing garden.
The NightLife exhibit at the zoo was great for Charlotte. Even though she is only 7 months old and doesn't have a clue what the zoo is all about, it is nice to take her into an environment where we know she will be able to see as well as we can. It contains all the nocturnal creatures who have mainly or exclusively rods in their retinas. Of course, it is very dark inside. We all adjusted to using our rods and checked out the animals. The best bit for Charlotte was the visual stimulation that the small lights in the ceiling offered her. She was looking around all over the place and couldn't get enough of it. But I was struck by how difficult it was to read in that level of lighting. However, she had a great time at lunch in the busy café: sat in a high chair, ate all her food and was really smiley and sweet.
I can't wait to take her to the Night Zoo in Singapore and on safari in South Africa!
The NightLife exhibit at the zoo was great for Charlotte. Even though she is only 7 months old and doesn't have a clue what the zoo is all about, it is nice to take her into an environment where we know she will be able to see as well as we can. It contains all the nocturnal creatures who have mainly or exclusively rods in their retinas. Of course, it is very dark inside. We all adjusted to using our rods and checked out the animals. The best bit for Charlotte was the visual stimulation that the small lights in the ceiling offered her. She was looking around all over the place and couldn't get enough of it. But I was struck by how difficult it was to read in that level of lighting. However, she had a great time at lunch in the busy café: sat in a high chair, ate all her food and was really smiley and sweet.
I can't wait to take her to the Night Zoo in Singapore and on safari in South Africa!
Thursday 1 April 2010
Looking after my inner introvert
It is hard to get a moment to myself with two small children and a husband who works incredibly long hours. I finally understand that "underfoot" was coined as a literal expression. If not the child herself, then the toys.
I love my alone time and I am just not getting any right now. I am constantly hearing "Mama, mama" all day. I love the sound of her little voice but the last two days it has sounded like fingernails on a blackboard. Poor kid, all she wants is me and all I want is some peace and quiet.
Amy is here this morning and I was going to go out, but having someone around to take care of the children while I get other things done (or not - as I sit here on the internet) is probably luxury enough.
This weekend is Easter and Martin is home for 4 days! We are going to the zoo tomorrow but I am reconsidering my participation in the outing and staying home with a DVD and pile of easter eggs instead.
I love my alone time and I am just not getting any right now. I am constantly hearing "Mama, mama" all day. I love the sound of her little voice but the last two days it has sounded like fingernails on a blackboard. Poor kid, all she wants is me and all I want is some peace and quiet.
Amy is here this morning and I was going to go out, but having someone around to take care of the children while I get other things done (or not - as I sit here on the internet) is probably luxury enough.
This weekend is Easter and Martin is home for 4 days! We are going to the zoo tomorrow but I am reconsidering my participation in the outing and staying home with a DVD and pile of easter eggs instead.
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