Sunday, November 28, 2010

messy baking with two year olds

I didn't quite realise before just how hard it is to bake with two year olds! While a 12 months old baby tried to eat raw cookie dough, two two year olds tried to cut cookies before the dough was even rolled out. When it came to decorating the first biscuits were eaten immediately (why would mama put sweets in front of me unless she's expecting me to eat them?) one was sprinkling hundreds and thousands onto icing only to lick it all off seconds later, while another just ate the alphabet sprinkles straight from the bowl! They did get into the spirit of things soon after, but another minute later they were bored and went off to play, while the mammies finished the job. Cleaning up afterwards was a sticky business! But all worth it, the girls had fun, and their mums, too, and proud little bakers brought home biscuits for their daddies.
Four of us had this great plan of craft afternoons for the little ones, but none of us have any experience, so we're learning by doing. About attention spans, the importance of being organised, and basically about enjoying watching them have fun, without getting to concerned about how perfect the finished project is going to be!
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Saturday, November 13, 2010

Eyes update, not so good this time

On wednesday we had our follow up appointment after the eye exam under anaesthetic and to our devastation, the consultant took back all the good news she had for us immediately after the eye exam. She talked to the professer in the meantime and he said it was very clearly a rare eye condition that we'd worried about. All the blood tests came back negative, she told me now that they were testing for antibodies to viruses, that I might have had during the pregnancy. She's going to refer us to a Genetics Consultant, they drew more blood from Emm (poor girl!) and examined my eyes, which were clear, no sign of the disease (it's believed that for most people with a gene mutation for this disease, there are only very subtle changes on the retinas, that are never noticed and never cause any problems), to pass this information on the the Genetics person. The baby will have to be examined as soon as it's born, too.

Emm also needs laser treatment to the scars as soon as possible, within the next two weeks. They don't think she's a candidate for drug treatment, which might stop abnormal blood vessel development. However, the consultant and the professor have only seen one case of this before, so they are trying to get 2nd opinions. It'll be hard to find them in Ireland, as it's just too rare, but apparently there's one specialist in Michigan, and there are some people in the UK and other, bigger, countries, that have several patients, rather than just one.

We weren't told if the disease is active at the moment, if there are abnormal blood vessels, if there's exudate (fluid that leaked from blood vessels and seperates the retina from the back of the eye), what stage she's at, but I think it's a matter of the consultant not being sure herself yet. The angiogram pictures were extremely blurry, nothing like the examples I'd seen online, so it might be hard to tell from them, unless there are others that are clearer, that I haven't seen. We're not sure if both folds had been there all along, or if she developed one of them in the last year.

I phoned the secretary on Friday, trying to see can I talk to the professor maybe, I couldn't. I was trying to get some more information, saying that I was doubtful they'd find a specialist with enough experience in Ireland, and of course lost it and got all choked up with tears again. They assured me that they are consulting specialists abroad, and that the consultant would call me on Monday and let me know if she's heard back from anybody.

After a two week break where we were recovering from the stress of the day procedure and MRI, starting to be just happy that it wasn't progressive and that she didn't need any treatment, even if it confirmed that she had very reduced vision, where we were getting back to celebrating birthday and halloween, cooking, baking, shopping, outings to the beach and market... now we're back to frantically trawling the internet for any information we can find, specialists, and how people find dealing with them, treatments, prognoses... It's heartbreaking to read the stories of children's vision deteriorating, the problems they have dealing with it, the horrific operations some of them need to have... We'll have to work out a way of getting back to living in the moment, to dealing with what's happening with Emm now, rather than worrying about the future. But I feel I have to be sure first I am not missing any vital piece of information that might help us! So it's long nights on forums, and google, trying to read medical papers where every second word is new to us, looking for information in english, german, i even worked my way through a dutch page, using the 'translate' button and what patchy knowledge I have of dutch. A lot of the information out there is outdated, there have been a lot of new discoveries in the last ten, five, two years.

Tuesday, November 2, 2010

dreaming about new boots

I really like the look of these! Yes, yes, I know they won't make my legs look like that in a million years! I like the way they slouch! I don't know about spending that much money on a pair of boots though, and looking out the window, suede boots are not really a great option right now... 
This one might be more sensible... I like the buckle! 

I was talking to a friend about Uggs and weather it was worth buying them, but she said she wasn't too fond of hers as they were too flat! something I sometimes find with my Birkenstocks, great  for around the house and garden, and driving, but for long walks I think I prefer either a little more heel, like an inch or so, or more support... She then showed me her FitFlop Boots, that's how I came across these! 

Ah, maybe it's not a good idea wearing wobbly shoes for me anyways, I think you're supposed to start before you get pregnant, with any new and different footwear... 

If I hadn't so many pairs of handknit woolly socks from my mum, I'd also like these shearling clogs! But in combination with the socks I would probably get heat stroke on my feet! They'd be lovely for the hospital though, when you're in and out of the bed all day long... 

Enough of consumer dreams, the babe's awake and we'll have to brave the weather and get some food into the house!!

Monday, November 1, 2010

Ginger cake

After the birthday and halloween shenanigans Emm came down with a temperature last night, which got up to 39.3 today, she's not herself at all! I've been up since five, as I drove my sister and her husband to the airport this morning. I thought I'd have a nap while Emm has hers but because she's been poorly she had a sleep this morning, which was too early for a lie down for myself. I did make a ginger cake though, which turned out more like a gingery treacle cake, but very nice none the less.

I also made two lasagne, and froze two one-pound-bags of bolognese (We cooked a big batch yesterday, I'd say we had a little more than 4 portions of it last night, gave 4 to P's mum to bring home (they couldn't stay for dinner), have now 4 in the freezer and the two lasagne probably count as 2 portions each, too. 16 generous portions, I like when the work that goes into cooking yields a substantial amount!)

I must get my hands on some rye flour and try this, I'm suspecting it might be as close as I'll get to the kandiskuchen i've been craving lately.

In a week and a half we have the next eye appointment, hopefully they'll have good news for us then, as in, they might have found a cause that is not linked to any further degeneration of her eyesight! We couldn't find any further information on babies being born with 2 identical looking retinal folds through the makula (of course not having any official medical terms to search for doesn't help) but I got a reply from the parent I contacted in Germany. He was surprised to hear about another case, they got their daughter's eyes tested about a year ago, and their specialist said he didn't know of another case like it in all of Germany (population of over 80 million!) but then their specialist mightn't have access to all the data... They were never given a cause for the findings, just that it most likely happened before birth.

I'm officially in the 3rd trimester now and feel very big, I have another appointment on the 5th I should get my iron results then. I do feel quite tired, but I think it's probably down to not sleeping. I'm just lying awake all night, either worrying about Emm or the baby, or having nightmares or other strange dreams with convoluted plots and no conclusions...

By the way, do you ever feel like you should be able to function on four hours of sleep a night, like some highly efficient people seem to do? I was very happy and sad to read that there's a gene mutation responsible for the ability to survive on so little sleep, nothing to do with the rest of us being lazy bast*&%s! In fact, I also read this article suggesting it might be bad for us to sleep less than 7 and a half hours per night! Now, there goes my hope that once I get over my lazy sleeping habits of at least 6 hours per night I will finally have that clean tidy house with lots of home cooked healthy food on the table, while also having time to play with my daughter, keep up with current affairs, read literature, knit, sew, help others or charities more, and keep up with fashion and some kind of beauty regime, in addition to earning extra money to afford said beauty regime and fashionable clothes... did i mention regular exercise? and socialising? and blogging? and yoga and writing and photography? ...or that there's a baby on the way....

I had 5 hours of sleep last night and can't you tell, rambling... I better get the little one to bed now, she's done with her puzzles and looking for some attention! I wonder will I stay up until P comes home from swimming (he goes straight after work) or should I give in and go to sleep as soon as Emm does...