A year ago today...

...I was a superhero for giving birth in 3 hours

...we had two perfect little girls

...we were so happy

Luckily, we are still so happy, we still have two perfect little girls and I still rock for birthing two children!

But I'm also so sad, so very very sad. Life has shifted on it's axis, ever so slightly, but a significant shift nevertheless. I wish I was back there a year ago and I wish I could just erase that one little genetic spelling mistake...


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Well, that's enough of that.

Happy Birthday Charlotte!

We had a really nice day today, Charlotte got presents in the morning and she loves her new shape sorter. I made chocolate cake, with white chocolate icing, in the shape of a 1! The photos look great (mainly because I am wearing makeup!), I spent most of the morning on the phone to my lovely family and a friend from Kenya was on a 24 hour stopover in London and dropped by for cake! What a great day!

I recently re-read my birth story about Charlotte's birth. I originally posted it on a listserv that I frequented regularly in my early parenting days. Since this blog is my repository of all things Charlotte, I think this is the perfect time to re-post it here:

On the night of my due date, I couldn’t get to sleep. I tossed and turned for ages after I went to bed. I woke up at 1.30am with a wet feeling in my pants and rushed for the bathroom. The fluid was a steady stream and I was trapped hovering over the toilet. Every time I moved, there would be another stream, there was no way I could get back to the bedroom to get a sanitary pad without getting it all over the carpet. I hung around in the bathroom for long enough that I eventually woke M up (ok, I knocked over a few things and generally made quite a bit of noise until he had no choice but to get up). Got myself a pad and fresh pants and hoped to get back to sleep. Pretty soon I had some mild crampy-ness in my lower abdomen. It was about 2.45am when this started and based on my previous labour and delivery, I was expecting that this would go on until at least the morning. I was hoping I might have a snooze in the meantime because I was a bit bummed that I had only slept for about 2 hours so far.
After about 3 mild contractions, they were getting stronger and my breathing (complaining) alerted M that something was up. He couldn’t sleep anyway and we chatted for a bit. He noticed that each contraction was a minute closer than the previous one had been so he decided to get up and do all the last minute things that he should have done the week before. He re-hung the bathroom towel rail, took some baby stuff to the cellar for storage, made himself some cereal and a coffee and took a shower. I told M I wanted to make his coffee (that’s my job in our weekend breakfast rituals) but he wouldn’t let me. He knew I just wanted to tell people that I made my husband a coffee when I was in labour! Meanwhile, I was wandering around, having more and more contractions in the bedroom, in the kitchen, on the toilet. I puked a couple of times and had a couple of really bad ones from time to time.
When the contrax were quite bad, I tried really, really hard to visualise them in a positive light: opening my cervix, bringing the baby down the birth canal. I was extremely fearful of the pain and I tensed up and closed up to try to prevent it. I also remember this vividly from my first labour. When I was visualising, it really did help to make the pain lessen. Either that or those contractions weren’t so bad. I told M he had to tell me to think “open thoughts” when he was holding me through them. He didn’t really get it and I think he felt a bit silly, but it helped me a lot so I told him so and then he was much better about doing it. So “open thoughts” was my mantra for each contraction. But sometimes I just begged “Please open!”
M wanted to text his sister to have her on standby to come over to look after Emily. I didn’t really see the point in doing that at 4am when we thought the earliest we might want her would be when Emily woke at around 6.30am. I didn’t want to be in labour with her around, wandering in and out of the toilet and moaning. At about 4.45am the contrax were really starting to get on top of me and I was thinking about getting to the hospital for whatever pain relief they might offer. My biggest regret with my labour with Emily was not going to the hospital sooner and labouring for so long at home in such pain. I asked M to get my notes out of the hospital bag to get the phone number for the labour ward and ask them if I could come in. He went off to phone and I heard him saying “my wife is in labour, she’s just puked, can she eat anything?” I’m thinking, “What the hell is he talking about???” “Tell them I want to come in for gas and air!” I yelled at him from the bedroom. By now I was sweating with each contraction and was kneeling beside the bed with my face buried in the towel I had fished out of the dirty laundry hamper when my waters broke (it happened to be a kids hand towel with pictures of ducks on it).
Thankfully, the labour ward weren’t too busy and they said I could come in. My contractions were coming closer together all the time. They had gone from 10 minutes to 3 minutes in the space of about 5 contrax. M phoned a taxi for his sister, she arrived, the taxi was waiting outside for us, we ran outside, I had a couple of contrax in the street. I asked M to double check that he had re-packed my notes, he hadn’t so he ran inside to get them while I stood in the street having contractions. Eventually, I could crawl into the back seat and kneel there. I had contractions all the way in the back of the taxi (still clutching the duck towel). We arrived at the A&E entrance of the hospital and were offered a porter with a wheelchair to take us to the labour ward. This guy pulled a wheelchair out of a cupboard and said, “there you go.” No way could I sit down, so I knelt on the seat and M pushed me backwards down the endless corridors to the lift. Thankfully it was completely deserted at about 5.30am and my horror at the porter not taking us was lessened by the fact that he would never have let me sit so unsafely on the chair. There was someone else on the lift with us but I was way past caring whom I moaned and screamed in front of. We got to the 5th floor and waited an eternity to be buzzed into the ward.
There was another couple in triage area of the labour ward but she was just lying on the bed with a fetal monitor strapped to her belly. No way was she in labour. (That was me 2.5 years ago, thinking I was in labour - sorry luv, you ain't seen nothin' yet!) The midwife was ready to check me for dilation and I was hoping desperately to be at least a couple of centimetres. I was a model patient: I refused to lie down on the bed, I wouldn’t wear a monitor, I wouldn’t open my knees, I was still clutching the duck towel like it was my childhood security blanket. Luckily she was a very bossy Caribbean woman who was clearly used to dealing with unco-operative mothers-to-be. When she checked me I was... 7 CENTIMETRES!! Woo hoo! I had only been having contractions for 3 hours! My first labour took about 24 hours to get that far.
I got off the bed saying “I want gas and air, I want an epidural, I want everything”. The midwife chuckled and told me to walk to the delivery room then I would arrive ready to start pushing. I got to the delivery room and got started on the gas and air. The midwife went to find the delivery suite midwife. Before she left, I told her I wanted to push and she told me I wasn’t allowed to.
Gas and air is a wonderful thing to me. It completely takes the edge off the contractions and makes them bearable. I had 3 massive contractions and the urge to push was overwhelming, I kept saying to M, “I’m not allowed to push, I’m not allowed to push.” They were getting to the point where they were getting on top of me again and I would be asking for the epidural asap. The midwife came back(same one) and said she would check me again. She didn’t even examine me properly, she just took a glance and said flippantly, “OK, you can push if you want. Your baby has blonde hair.”
I was so excited that I was fully dilated. Clearly, those last contractions were the baby coming down the birth canal of its own accord. Then the midwife told me I had to put down the gas and air. I was so devastated by that. I told her I wouldn’t. She said, do you want the pain to be over? I told her I would keep the pain and keep the gas and air. She said it would be too distracting for me and I told her I was good at multi-tasking. She was so good with me: patient and bossy!
The pushing was really hard, it really hurt and I felt quite discouraged. In reality, it was very short (11 minutes, according to my notes), but it was a lot longer than Emily’s ventouse delivery had been. I was feeling burning for what felt like ages. At one point she went to get the mirror and I couldn’t bear to look as I couldn’t handle the thought that the head was not half out and the pain was already so bad. Eventually the head came out, the shoulders were painful too and then it really was over.
The midwife dumped her on my belly and we all said hello to each other. M called the time (06.51) and cut the cord. Then the midwife lifted my shirt and put her on my breasts, she started rooting around, found the nipple and started sucking.
I was elated at how fast it had all gone, I had suppressed my fears of another awful birth experience and expected that I would just get through somehow. I don’t feel like it was a wonderful experience and would never advocate that every woman should do it, I just feel like I got off lightly and am wholeheartedly relieved. I’m so instantly in love with her, even though I barely know her. I don’t know if it’s a better birth or the confidence of knowing what I’m doing the second time around but it is all so much easier and more enjoyable this time.

First Birthday Celebration!

Today we went to Harrods to get Charlotte her very own Harrods teddy. Emily's favourite familiar is a Harrods teddy and she was allowed to bring him along too. After we selected the teddy, we stopped in a café to have ice cream sundaes and Charlotte opened her presents.

It was pretty low-key but I didn't want to try to have too much of a party. She doesn't have any baby-friends because I don't take her to any baby groups (second baby!) and because her birthday is on Tuesday we won't be able to have a celebration with the family. I love to bake so I will make her a cake to have at home in the afternoon and, as a celebration, this was a nice outing to mark a special occasion.

Sunglasses tally

I feel like I should keep a record of the sunglasses that we have been through. We keep losing them because Charlotte likes to throw things out of the pram and if we don't notice... bye bye sunglasses.

In order of appearance:

1. Heart-shaped, white frames with heart pictures

Image: too horrifying to photograph
Cost: £0.00 (gift for Emily)
Source: belong to big sister
Reason: they were the only damn things that had short enough arms that when she was lying down in her stroller they wouldn’t get pushed forward off her face.
Review: Lots of smiles and stares in the pram. Very embarrassing. “No, my baby is not wearing these because I think it is funny, she is wearing these because we don’t have anything else that fits right now!”
Current status: Unfortunately, we still have them, they sit in the medicine/sunscreen basket.

2. Toddler sunnies, orange/pink with butterfly pictures


(This is Emily, not Charlotte)

Cost: £0.00 (These belong to Emily)
Source: Local pharmacy in Shoal Bay, Australia
Reason: She would keep these on better than the Baby Banz
Review: I love these sunnies, they look great! They are Emily’s proper sunglasses right now. But, despite the mirror coating, they are not that dark. Besides, they were clearly too big for Charlotte as a baby. When she is older and Emily has outgrown them, they will be saved as a backup pair.
Current status: Emily still owns these

3. Beaba baby sunglasses, beige

Cost: £11-ish
Source: online somewhere, probably Amazon
Reason: She was still rejecting the Baby Banz and these were the only style I knew of that I hoped might be small enough to fit her face closely but with actual arms instead of a band.
Review: I was never particularly sold on these. Charlotte accepted them fine but the fit wasn’t very close to her face. I think the shipping messed them up a bit and they always sat crooked on her nose. I could never get them to straighten. They were a reasonable level of darkness but there was so much light leakage around the sides that I moved straight on to really working on getting her to accept and wear the Banz. I also wasn’t very keen on the colour, beige should be a nice neutral choice, particularly since she is wearing them in all weathers, but they just looked a bit blah.
Current status: In the hall cupboard as a last, last resort emergency pair.

4. Baby Banz, aqua


Cost: £10.37
Source: Amazon (given in Christmas stocking)
Reason purchased: Couldn't find the pink ones in the baby stuff in the cellar. (Found them about a week later - of course.)
Review: Good for wraparound qualities but not that dark. The band takes a while for them to get used to (see above failed sunglasses appearances) but once she got the hang of it, it didn't bother her so much and she would keep them on. The band is bad for wearing with a hat, either summer (very important for us) or a winter wooly one. I also hated the red marks the frames left on her face.
Bonus points: if you can get the band over a wooly winter hat, they look like a way cool snowboarder!
Current status : Unknown. They were thrown out of the pram on the school run, I scoured the pavement on the way back and the next day. We even enlisted the help of the upstairs neighbours who were on their way home, but no luck.

5. Baby Banz, pink

Cost: £0.00
Source: inherited from big sister
Reason: bought for Emily as a baby for Aust trip
Review: see above for Aqua colour.
Current status: We still have these, they sit in the pocket of the stroller as an emergency spare.

6. Julbo, Looping I, Pink/grey


Cost: £24.94
Source: Little Trekkers
Reason: One morning Charlotte tossed the pink Banz out of the stroller. Martin was with her and phoned to tell me what happened but he didn’t phone me back to tell me that he had gone back and scoured the pavements and found them. (He's very thorough.) He never in his wildest dreams imagined I would have been so efficient as to have ordered another pair within an hour! I had them in mind for ages, a friend recommended them to me. I wasn’t going to buy them immediately but when the need arose, I was there, clicking away with the mouse.
Review: these have been my favourites to date. The lenses are extremely dark, 95% light blocking, the mirror coating helps. The frames are durable, comfortable, attractive and close fitting. Moorfields and RNIB even stock these frames for their custom lenses now. In fact, the pair that I took to Moorfields were these ones. Again from an earlier post where they said they wouldn’t be able to produce anything better than them at present.
Current status: Lost. I am sure these came home with me a few weeks ago but I have not found them since. There were a few scratches on the mirror coating where I think Charlotte had a bit of a gnaw on them but they were in otherwise good condition and they were expensive so I am very sad about that.
Update: Found tonight! In one of Emily’s toy handbags. Everybody in the household denies putting them in there. At least now I can wrap the Julbo IIIs she is getting from my Mum for her birthday (see below).

7. RNIB amber lenses in Julbo Looping II frame, blue/green


Cost: £22.xx
Source: RNIB
Reason: I was reading more and more about Achromatopsia (even before her confirmed diagnosis) and thought I’d better get Charlotte some more serious eyewear. But the cost put me off a bit. Then I was talking to Michael who said that amber coloured lenses really helped him with contrast. So I ordered them. Lucky I did, because they took ages to arrive and I had to chase them multiple times. Having said that, I didn’t pay their invoice for ages because I am not used to being invoiced for things and having to send a cheque. (Says the online shopper with a credit card habit)
Review: We have only just started using these in the last week (since the mysterious disappearance of the Julbos). They have been a bit too large and the lenses aren’t that dark. Charlotte seems to really like them though. They are great for cloudy days and indoor on bright days. I like that I can see her eyes through them, which I can’t with the mirror coated ones. When I look through them, they definitely distort colours and shades into simple light and dark. I don’t know if this is completely beneficial to Charlotte, I’ll have to see how it compares to the red lenses (up next). I think that Charlotte’s rods work better in the dark areas which the amber lenses just merge into shadows. I can see that they would be very helpful to someone who has vision which is mostly just light and dark shapes because they make the lights brighter and the darks darker which is obviously good contrast. Privately, I have also been avoiding these ones a bit because of the blue frames which are just so boy-like. I don’t think I am too gendered in their clothing but these are different, they cover half her face and she wears them all the time.
Current status: Perfect second pair. I think I might order a pair of yellow ones for indoor when she is a bit older.

8. Julbo Pop Toddler, Rose


Cost: £20.14 on sale (but Mum bought them as a birthday gift for Charlotte)
Source: Little Trekkers, of course!
Reason: Sad loss of Julbo Is. I decided to upgrade a size and these were cheaper than the Julbo Looping IIs.
Review: They are the same lenses as the first Julbos so that’s great: really dark, mirror coated. The frames are a bit of a strange shape though and the colours on the frame are a bit wilder/brighter than the first pair. I wouldn't get them again because the Looping styles really are better: they don't have hinges on the arms and you can't put them on upside down (which happens more often than you would think).
Current status: Was going to be her primary outdoor pair until the return of the Julbo Is, now they will be spare until Is are lost again or outgrown.

Coming soon:

9. NoIR Dark Red 4% in infant size (£49.94)
UK stockist: Optima
I have high hopes that these will be her regular outdoor glasses. Of course, I will be posting their own special review. But they won’t let me choose the colour of the frames! For £50 sunglasses!!

Other sun protection purchases:

Universal sun shade for pram: Shade-a-babe (£35.00)
Great sunshade, I move it from pram to pram and she really likes it. I hate how it hides her away from the world though.
Sun tent: Nivea (£26.90)
I thought we would use it on holiday and in the garden but I never do. It’s hot inside and very bright. I can usually always find shade instead.
Hats: £0.00.
Emily had tons. I am really aware of sun protection and we have been to Australia regularly enough that she is kept in a good supply of sun hats and swimming hats that have all been handed down in due course.

Total purchases:

Sunglasses: £138.39
Other: £61.90
Grand total: £200.29

That’s not so bad really. In light of the fact that our medical care is completely free and I am being seen by a wide range of specialists, we really aren’t shelling out that much money. A Paediatric Ophthalmologist charges a standard £205.00 per private consultation and we have seen one three times on the NHS. I should add up the market value of the NHS-paid care we have received. Wait until the genetic testing bill comes in!

Crawling cutie!

Charlotte started crawling this weekend. She has been at it almost a week now and is finally getting the hang of it. She looks so adorable, crawling away from me with her bum wiggling from side to side! I've never had a crawler before - Emily was a bottom-shuffler. Emily thinks Charlotte is hilarious and they were so cute this evening, crawling along together. She doesn't think it's so hilarious now that Charlotte can get into her stuff. We have to work on having Emily doing unsuitable-for-baby things on tables and distracting Charlotte with other activities. She is just so darn stubborn, she has her father's stubborness and her mother's fiestiness - oh boy!

I have always had high hopes that mobility would give me better clues about the light levels around the house that Charlotte feels comfortable with. Tonight, she was quite willing to go through patches of the passageway that were quite well lit. I was really pleased because I expected she would avoid them. Maybe I can open the curtains a bit.

I am also hoping against hope that this newfound mobility will end the extreme fussiness and separation anxiety that has been going on around here for the last few weeks. Whenever I put her down, she cries instantly, then I pick her up and she squirms to get down. Actually, I think she squirms to get closer to what she wants to see and she wants me to take her there rather than put her down. Sorry kid, not going to happen, you're on your own now. Off you go!

New nanny

Charlotte and Emily have a new nanny as of today. I am heading back to work in a couple of weeks. The nanny was really good about spending time with Charlotte in a dimly lit room and really attentive to things like sunglasses when we went out. I just keep thinking how much I am going to miss them! At least it is only 3 days per week.

I also ordered a pair of NoIR dark red sunglasses today. I found the UK stockist: www.optimalowvision.co.uk I'll post back when they arrive.

Book review: No End in Sight by Rachael Scdoris

No End in Sight, My Life as a Blind Iditarod Racer by Rachael Scdoris and Rick Steber. I have to say, I enjoyed this book a lot. It is not going to set the literary world on fire but it is an entertaining read and the author's voice (even though it is ghost written) comes through loud and clear as a very likeable individual.

I was saddened by the chapters about her difficult time at school. I am a little bit hopeful that these were played up - in the name of overcoming adversity. I learned a lot about sled-dog racing. She has made some factual errors about Achromatopsia: the book describes it (twice) as a disorder of cones and rods.

I think I'll get a copy for Mum for her birthday - it's a far more interesting book than Oliver Sachs'. I wondered if I should send her a message via Facebook?

IVF?

One of the Achroma-Mummies that I know through Facebook mentioned today that they are considering IVF for the conception of a second baby. The embryos would be tested for the Achromatopsia gene before implantation.

M and I have talked about this before and I have always been adamant that I would not go through the rigours of IVF to avoid the 1 in 4 chance of having another Achromat. Am I in denial about the seriousness of living with this disease? If I was really baby-crazy, I wouldn't hesitate to try for another one. The odds aren't that bad and the condition isn't that bad. Plus, the family are already set up to deal with it: your house is already darkened, the sunglasses already researched, and they would grow up with a built-in playmate/buddy/understanding person around. As for medical treatment: in the UK, it is paid for by the NHS.

But am I looking at from the luxurious perspective of already having two children and not being broody?

Two philosophical questions:

1. Is it irresponsible to knowingly concieve a child who may require more medical resources than another child, knowing that these resources are going to be paid for by the taxpayer?

2. Is it bad of me to be more willing to submit our offspring to a possible life with Achromatopsia than to go through IVF and genetic testing of embryos? Am I trading my own convenience and expense for their future happiness?

I would be really weary of creating a designer baby, one of the biggest reasons is that nobody is perfect and trying to create the perfect child is sure to end in dissapointment.

At the heart of it, I feel like it is kind of disloyal to Charlotte and her peers, kind of like saying to them, "What you have is so terrible that I am going to go through all this time, pain, heartache and expense to avoid it ever happening again."

In the Night Garden...

...Live!

We took the girls to their first ever theatre experience today. Admittedly, it was the live production of a favourite TV show but it was still theatre, and it was well done.

The real intention had been to take Emily, then we decided to get a ticket for Charlotte too. It was cheaper than hiring a babysitter! She didn't really get anything out of the production and we would probably have had a better time with Emily alone, but I am pleased that we took her too. They had these light-up windmills that they were selling and the audience were waving them around. Of course we got the girls one each and they are a really good visually stimulating toy for Charlotte. I was also delighted to see her looking at the projection of stars on the ceiling of the theatre.

We talked about it and decided that we were going to take Charlotte along to whatever we would take Emily to. So off the Night Garden she went. Emily had a blast and I am so delighted that we did it. We'll take them to something at Christmas next.

I also got a lovely message today from one of the mums in the Achromatopsia Facebook group. She was telling us that someone that she rides horses with has Achromatopsia. I expect I will try to get Charlotte involved with horse riding if she wants to. They even offer it though the school!

Miscellaneous ramblings

I've got lots to write about today, sometimes I think I don't have anything to say but if I really think about it, I can usually come up with something. Today, I have lots of somethings.

Firstly: Charlotte and her injuries. It's still not normal and not right. I took her to the doctor yesterday. He was nice about it but didn't really feel that it was so serious that it merited further investigation. He recommended damage limitation and wait and see. That's ok with me for now. While it is concerning that she would rather do the action than avoid injuring herself, it could be a bad habit, it could be a way of stimulating her senses, it could be soothing and hopefully, it will just go away on it's own. At least I have raised it with someone and I don't feel like I should be doing any more right now. The Dr pointed out that if anyone is going to work with children with negative behaviours, it would be when they are older anyway. I am still going to mention it to every professional that we go to see and I am going to call her VI teacher about it again when the summer holidays are over. Also, it is good that I know about these sorts of injuries before the new nanny starts, it would be very disturbing to have random bruises and scratches appearing on my baby with a new caregiver in the picture. I'll have to talk to her about them when she starts (one more week - can't wait!)

I finally got up the courage to start going through Charlotte's baby photos in preparation for producing a baby album for her. I haven't been able to look at photos from her first three months. All I think about is how we were so happy and we had everything we ever wanted. Well, no one ever has everything they ever wanted and we are still happy now. One of the things that Martin articulated when all this first happened was that he lost the feeling that he had always had that life would only get better. I think we are back in a place where we do expect that life will continue to get better. We really do have it very good. Still, the photo viewing did make me sad. But I am looking forward to producing a nice album for her. Since no one has given me a nice album, I think I am going to get a photobook online. Filling it with pictures of a second baby is always a challenge - there are almost none of them alone!

I finally took delivery of another Achromatopsia-related book today. It is No End in Sight, My Life as a Blind Iditarod Racer by Rachael Scdoris and Rick Steber. Rachael has Achromatopsia and I'm looking forward to reading it. In fact, I have read about two chapters already, as I finished undoing the packaging - even though I was supposed to be making dinner. I'm going to sit back down to it as soon as I finish this blog post. I think it will be a pretty fast read and I'll post a review when I am finished.

A good article about Blind Football was published by the BBC today: http://www.bbc.co.uk/news/magazine-10914782 I don't know if I am more attuned to it now, but I do see mention of Blind Sport from time to time in the mainstream media. I guess it is one of the more intriguing things about blindness - most people know about Braille and guide dogs. I think it is good exposure and I really hope that we are going to be able to hook Charlotte up with sports associations in the future to help her build confidence and physical skills. Of course, if she wants to get out there with the fully sighted, that's fine too! I think I will be paying closer attention to the Paralympics, looking for blind athletes to point out to her.

The Yahoo Group has posted some early ideas about an Achromatopsia Conference that they would like to plan for next year. There have been a few in past years. It sounds like a good idea and I have been wondering if I can lend my event-planning skills in any way. Mainly, I am wondering if I can bring any money to it by finding willing sponsors or exhibitors for the event. I'm not sure, there are two companies I can think of who would be flogging their products and services to Achromats and they know they are already well known by the community so I don't know how much they would pay to get in front of them. Maybe to preserve exclusivity?
Sponsor types:
-Ophthalmologists
-Low Vision services
-Sunglasses
-Genetic testing services
Something to think about anyway. I wonder how many people they are expecting? I don't see us going but I'll follow along with their progress.

Mwah

Mwah, mwah, mwah. That's the kissing noise that Charlotte makes every time she sees me! It's so adorable! I think that is my name at the moment because she can't yet say "mama". It's because every time I pick her up, I kiss her, usually about 3 times!

She's still doing the stretching and tensing. It's not normal :(

School holidays are driving me crazy!

So much for enjoying the time at home alone with the two little girls. I can't wait for school to go back so I can get some peace and quiet!

I have no space to think, to do nothing, or to even walk around my house without stepping over, or tripping over a toy, dropped food or a child.

Only two more weeks until the nanny starts and then, thank heavens, I won't be on my own with them any more. I am bored, they are bored. We get out every day but I feel so aimless and I don't do well without a schedule and a plan.

I really liked the idea of unstructured time for them during the holidays. I think that they get too much schooling right now: too formal, too long, too young and I wouldn't have booked Emily into any school holiday activities this summer. But maybe it would have been a good idea because being at home with a mother who says things like "go away" and "I'm too busy" can't really be good for her. I am a bad, bad mother. Hopefully the teachers are better teachers than I am a mother and they will take good care of her when school goes back in September.

I think next summer some morning "camps" might be a good idea for some of the weeks. All her classmates seem to be at camp.

Not normal

Charlotte's tensing is really bothering me right now. She does it constantly. So much so that Emily has now started doing "ballerina feet" - she sits on the edge of a chair, crosses her ankles, points her toes and stretches her legs out. It would be very cute if it weren't so worrying.

I mentioned it to our Achromat-friend's Mum and she said that he used to do it too. I was so concerned that I phoned her over the weekend to talk about it some more. I wonder if it is a coincidence or if it is indeed related to their vision. He doesn't do it now that he is walking but he does keep some tension in one of his hands which is clenched in a fist some/a lot of the time. I hope she does mention it to Professor Cone because I would be really interested to hear what he has to say about it.

Charlotte does hers when she is excited, cross, bored, frustrated and many more emotional states. Everything except calm. I wonder if she does it when she feels visually unable to orient herself in space. For example: She does it on the swings and while she likes being pushed on them, it is probably a pretty strange experience if you can't see what is going on around you but you know you are moving all the same.

We went to another Osteopath today. The one last week was too far and I had to pay for 3 hours of babysitting for Emily just to take Charlotte. For a not for profit, it ended up costing me over £60 which is a bit steep for something I am not even seeing a difference in. There is a college locally and they offer a free children's clinic so I took Charlotte along to that. They were very nice but they don't do cranial-sacral which is what I wanted. I should have asked but because they are students, they aren't able to do it. So I think I'll stop with the laying on of hands and wait for her to start walking. In the meantime, I'll mention it at the next round of Drs visits coming up in September.

I feel a bit like I have Munchousen Syndrome by Proxy. I feel like I am getting all this attention by having a "sick" baby. Nothing is simple when giving a medical history and the list of practitioners that I take her to is long.