Friday 30 July 2010

Separation anxiety

Charlotte is at the age where she is experiencing separation anxiety. When you don't experience something with the first kid, it seems harder when you do experience it with the second kid. Charlotte's separation anxiety may be worse than usual because she can't actually see me across the room. Every time I sit her down on the floor she starts to cry. This is probably because she thinks I am going to leave her on her own. She is probably right. I am trying to talk to her the whole time I am not right with her and also to sit her down and not leave her on her own every time. I am sure that this will pass, it just feel like forever when in reality it has probably been two days. Funny how they have to become less independent in order to gain their independence.

Wednesday 28 July 2010

Row, row, row your boat

The two little girls were so cute in the bath today! Emily was playing with Charlotte really nicely. She mostly just ignores her so it was lovely to see. I see Charlotte looking at Emily with such adoration in her face that it melts my heart. She has to be pretty close for her to see her and I was a tiny bit heartbroken when I looked over the photos that I took and saw that Charlotte wasn't really looking at the camera. She was focussing slightly above and her eyes didn't seem to both be pointing in the same direction. Nevertheless, she was adorable!

Tuesday 27 July 2010

The laying on of hands

I took Charlotte to a Paediatric Osteopath today. It wasn't for her vision, but as it always does, it came up. It is part of her whole wellness and general health and it does come up when I am giving a medical history. It really came up today because I started talking about the raft of people that we see in our day to day lives: Developmental Ped, OT etc. I was going to mention the vision at the end of the history but, as I said, it came up anyway.

The reason I took Charlotte to the Osteopath was because she has been tensing her body ever since she was an infant. She makes her limbs go rigid and holds her breath for about a second or two and then releases. I say "she makes..." because it is somewhat voluntary because if you hold her feet apart where she can't cross them to get any traction, she won't do the tensing.

I spoke to my friend, a Health Visitor about it over the weekend and she recommended it. I have shown the Dev Ped her doing it and he wasn't particularly worried because he said it's not a seizure. I asked Harvey's Mum if he does it and she said he used to before he was walking. I wondered if this was more coincidence than vision but you never know. I should mention it to the Ped Opth the next time we go.

So we had the laying on of hands for Charlotte, I'm not sure if it's going to make a difference but we will go back a few times. It's worth a try because she is really starting to hurt herself doing it: she is getting bruises between her knees, red patches on her feet and scratch marks on her arms from her opposite fingernails. I feel dreadful, is there something really badly wrong with my poor little baby to do this to herself?

Monday 26 July 2010

New website

Less than a week after I posted the web resources below, I checked out the Yahoo Achromatopsia Group and found a new website from the Low Vision Drs in Indiana. The info is pretty good and I have added a link to the sidebar. Of course, it is a sales exercise for their services so I have to view it with a filter (HA HA!) but it is working on me - I've even looked at how to fly to Indianapolis from London. But, I confess, I did have to look on Google Maps first to find out where on earth it is. I'll have to go back and see what the members of the discussion groups are saying about it. But that will have to wait for another day, I have stayed up way too late as it is.

Wednesday 21 July 2010

My favourite web resources

As I was compiling a list for a friend of a friend, I realised I haven't got all my info written down in one place. So here goes:

General web stuff: Wikipedia, You Tube, Facebook, Yahoo Groups
Specialised Nystagmus Networks: America: www.nystagmus.org; UK: www.nystgamusnet.org
Blind Charities: RNIB: www.rnib.com (info on eye conditions is good); USA: www.afb.org (forums are extensive and searchable)
Blogs:
http://theshiftyeyesblog.com/
http://mikehughescq.wordpress.com/2009/09/20/nystagmus-oh-you-mean-like-astigmatism/
http://nystagmusblog.co.uk/
http://nystagmusandcones.blogspot.com/
Forum (this one seems to be the most active for Brits)
http://www.nystagmus.co.uk/forum/index.php

Disability: http://www.schuylersmonster.com/presskit/P101_perfect_child.pdf
(because the other article that does the rounds - Welcome to Holland - is rubbish!)

Friday 16 July 2010

Achromat "playdate"

We met our first other Achromat this week. Harvey came over to play with Charlotte at our holiday cottage. It was so fortunate that we were on holiday there, otherwise we would have been quite unlikely to have met up with them. His Mum brought him over, he is just over 1 year old. He wears his sunglasses almost all the time and they have a prescription in them too. He was toddling fine, I kept the curtains drawn and they got on well. They are both at that kind of annoying age where they just swat at each other, rather than play with anything. But it was nice to meet another kid with the same condition. His nystagmus is the same, but he looks up to focus and I think Charlotte's preference is down. His mother is really nice and it was lovely to talk in person to someone. We are going to make a plan to meet up again - logistically it is not that easy though.

Wednesday 7 July 2010

No new sunglasses

I went to Moorfields yesterday to try and get some even better sunglasses for Charlotte. They only prescribed 20% instead of the 4% that I had been reading about. The woman said that 4% would be almost like darkness. Yep. She said I should stick with the ones I have right now.

I am thinking of mail ordering some from the USA which a lot of people on the internets are raving about. They are $77.00 though, presumably before tax and shipping. I don't think they will offer a good enough fit at this age.

She was enjoying her amber ones when we were out and about in the pram. It was an overcast day so I left the sun shade open.

Friday 2 July 2010

When in doubt, be normal

That is a good motto for us, one to remember at all times. The best thing we can give Charlotte is a normal, happy childhood. When I am looking for nannies, I wondered if I should disclose Charlotte's "extra needs" in the advertisement, but I didn't, we aren't looking for a nanny of special needs children, we are looking for a normal nanny for normal children, one who is particularly caring and attentive. I met somebody lovely last night and I am definately inviting her back for a second interview. I have three more to see and I will hopefully be able to invite two of them back.

I have also heard from Moorfields about sunglasses, they have the recommended tint from the Opth team (20% light - which I don't think will be dark enough) and I have to go and choose frames. I'm going to go on Tuesday next week. We are all so sick this week that my 10 visit Bikram Yoga card is going to expire.