Glue ear

We spent hours at the ENT hospital today. The clinic was insanely busy and I had insanely taken both children with me to the appointment. They were good as gold though and I would have worried about getting back to Emily had she not been with me.

Charlotte still has fluid in her ears, one is completely blocked and this does cause some degree of hearing loss. Hopefully time in Australia will clear it up a bit and then going into summer will be good for colds too. This could explain her slight delay in speech so hopefully she will catch up fast if we can get her ears cleared up.


She did really well on one of the tests that went so badly last time. Her vision is clearly much improved, she was interested in the light up boxes of toys. I don't know if she liked the lights or the toys but she was very interested and smiling away.


Unfortunately, this means we have to go back to the hospital in 3 months time and do it all again. Hopefully they won't be so busy that they can't even move patients through the rooms. Also hopefully a long, long plane ride won't do her ears any harm. Note to self: Charlotte really calms down if I cuddle her and sing softly to her (so the other passengers might be listening to many, many verses of The Wheels on the Bus).

Small steps

I am getting increasingly worried that Charlotte is falling behind in her development. She is still progressing (which is the main thing) but she is a few days short of 19 months and she still doesn't walk or talk in any meaningful way.

That said, she did toddle from the bathroom to her bedroom tonight. That is the most steps she has ever taken by herself and the first time she has taken more than 2 steps that weren't to another person. Also first time she has ever walked from one room into another. So great strides are being made there I guess! Two side notes: 1. she is a very good climber and 2. naked toddling is pretty much the cutest thing I have ever seen, after naked crawling.

Then the talking: for a special kind of torture, I consulted the excel spreadsheet I used to keep of Emily's words when she started talking (yes, yes, I know). She is a child genius, of course, but she had so much more vocabulary at 17 months than Charlotte does at 19 months. But Charlotte is still acquiring words slowly, not one a day by any means, but acquiring nonetheless. Emily was an early talker too, she had very intellible language by the time she was 2. I guess I was hoping for that for Charlotte. We have a second hearing test for her on Wednesday. Maybe it's the Glue Ear from the perpetual colds they have had ever since the summer. I'm pretty sure she can hear, she does now turn towards the source of a sound. She can hear something quiet, like the click of my phone.

All good signs, I know, I am just feeling a bit frustrated that her progress seems so slow. I was hoping she would be walking properly by now and talking a lot too. We'll be with my mum in a few weeks and I am hoping she will get some good one on one face time with her which should help a lot with the talking.

And so it begins

I had my first meeting with a potential school for Charlotte yesterday. I was actually meeting with the teacher to tell them that Emily is leaving but I wanted it not to be all about that. I want Charlotte to go there if possible so I want to be on friendly terms with them. It sounds a bit funny that I tried to do that by talking about my disabled child. They were sort of interested-but-distant. I think they were probably thinking, "why are we spending time talking about this stuff when she is not going to get in anyway because you took your other child out". Maybe I'm being overly paranoid about all this but the whole admissions process that goes on around here stokes that fear and paranoia among parents. This is just for nursery school! Which is the basis of the reason why we have moved Emily - she will now be going to a school which will educate her for the remainder of her school life and we never have to go through another admissions process with her again.

Surviving Great Ormond Street

We've been at Great Ormond Street Hospital today for a routine checkup for Charlotte. For various reasons, I've been dreading it for ages but, thankfully, it was nothing like as bad as I expected; and the news was even slightly more positive than I expected.

Firstly, it seems that the ERG test that Charlotte first had when she visited won't be repeated. This is the more painful one with the flashing strobe light and apparently it is used to diagnose other conditions that have now been ruled out for her. So the test that she now continues to have involves looking at a screen of moving black and white squares while they measure her brain activity. The most painful thing about that test is the pain all the adults in the room have: trying to get a toddler to wear electrodes, wires and a stretchy bandage to hold it all in place without pulling the whole thing off her head; and then getting said toddler to look at the damn screen long enough for them to get any meaningful readings. But we got there in the end!

The good news is that her rod function is still normal. Phew! AND... she might even have some faint cone activity. Whoo hoo! I'm not getting my hopes up but any cones are better than none at all. She might be an incomplete Achromat. Like everything else here, time will tell and life goes on regardless.

I wasn't that keen on the Dr who saw us, she is a fellow of our main Ophthalmologist (whom I really like) but in the NHS, you don't always get to see the consultant but one of their underlings. She didn't seem to handle our questions very well and it kind of felt like we knew more about Achromatopsia than she did. I think it was down to lack of communication rather than lack of knowledge but it might as well have been the same thing. At least we are not new to all this any more.

We'll be back at GOSH in a year or more. Fine with me, I'm in no rush to go there ever again. It is so heartbreaking seeing the children there. I've learned that the larger and more complicated the wheelchair, the harder I need to try to not look inside. :.(

Ball!

Charlotte saw something from across the room today!

Granted, the room in question is about two meters across but it still counts in my book!

She looked over at a small soccer ball and said "baw!" She was pretty excited to see it and I was pretty excited that she saw it!

I really do feel like her vision is improving every day.

A love of Audiobooks

One of the things I love about my new iPhone is how accessible it has made audiobooks. There are so many free titles that I think I will be listening for the rest of my life.

I would never have downloaded or purchased this kind of thing without a phone hence, my love of the phone.

I would hope to get the whole family involved in my listening pleasure. When we eventually get our first car (this summer), I hope we will listen to children's audiobooks during the school run. In the evenings, not caring much for TV (you never can tell when your favourite shows might feature children getting hurt), I now love to sit and listen, and knit, and hope that the children will join me in these peaceful evenings as they get older.

Not that we expect our children to mirror ourselves and our tastes, but I do take great delight in the fact that something that is so enjoyable to me is so completely accessible to Charlotte.

New Achromatopsia Blog

A welcome new blog from someone with Achromatopsia:

http://factoidz.com/what-is-achromatopsia/

I'll be following along with interest because I can never get enough information from first-person experiences.