Damsons. And an admission.

We got loads of Damsons/Plums this year, and they were delicious! I made some damson compote, too, we use it in our porridge, on pancakes, bread... And I froze some and put some into jars... 

We gave lots of them away to friends, and there are still a good few on the tree, a real bumper harvest! It's been a real fruit year, so we got to eat lots of delicious fruit that we'd never have bought in the shops (fruit are quite expensive here). Redcurrants, gooseberries, tiny strawberries, blackberries and plums did well, our cherry tree had all of four cherries, three of which were eaten by the birds!

...This post has been half written for a good two months! I have been finding it very hard lately, just getting through the day and putting dinner on the table. I've been diagnosed with osteoporosis, lost yet more weight and am still nursing my gorgeous boy, I feel very, very drained! I haven't really written anything, or knit or made. Ti is crawling and cruising and Emm is her usual energetic self, and sometimes not as kind as I'd like, to her little brother, so 100% attention at all times is required, then in the evening I seem to catch up with housework and paperwork and then fall into bed or stare at the TV for an hour. I might have to take a break from blogging!

I know there are a few of you that read my few and far between posts, stay tuned I hope to be back when the childrearing has become a little easier, or when I'm back to work! Lunchbreaks and commutes should facilitate some writing!

Mandarin Chocolate Roll

Yeah, I haven't quite got the hang of making swiss rolls, this is not the first time I ended up with a chocolate circle! ...filled with freshly whipped unsweetened cream and tinned mandarins, my favourite of all the swiss roll type cakes. With cream cakes I usually have black coffee, even though I usually take milk, it's just perfect to cut through the creaminess and richness. Emm loves all the German cakes, too, as you can see, my mum makes sure of her getting a taste of all the best cakes, when we're over.

Health updates, Emm and Ti both had EUAs and FAs 3 weeks ago, Ti needed more laser, the consultant said he has avascular areas all around the retina, the areas they lasered the first time had calmed down, but the other areas that they hadn't really looked at, before, had started to produce abnormal bloodvessels. They couldn't really see his retinas properly because he was scrunching his eyes closed and moving his head at the follow up 1 week ago, but they said there were no 'dramatic' changes or leaking. We'll now have to hope and wait for the next EUA at the beginning of July

Emm had a visiting teacher over, who was just lovely. There was no help or encouragement from the hospital, but I gathered lots of information online and contacted the NCBI who've been great. The teacher said that Emm is coping really well with the vision she has, and that with close up work, it hasn't held her back at all. She called her pleasant and lovely and all sorts of nice things and said several times that she's doing really well for her age. She showed me some games that I can play with Emm to help her practice depth perception, which her eyes don't give her. I'm glad she's doing so well, the more she can learn and understand now, the better, because if there is more damage to her eye sight in the future that's going to be hard for her and might slow her development then. And her goodnaturedness might suffer, too, if she gets frustrated and upset with sightloss.

We've settled into routines with Ti, but he still hasn't shown any inclination to feed at certain times, it's different every few days. He does sleep most of the evenings and nights, most days, which is great. His 'abnormal eye movements' have calmed down dramatically, as have his episodes of crying and arching his back, we're hoping it'll stay that way. He is 'pukier' now, but doesn't seem to be as bothered by his stomach.  He's a happy little fella most of the time, and very strong, and putting on plenty of weight.

I've looked into donating milk to the milk bank in Irvinestown, which serves all of Ireland, but the amount of milk required worries me, I don't get as much milk when I express, this time around. It would take me a long time to get the required amount of bottles, and our freezer is so small... Now if we were to get a big freezer to put into the shed, that would make it easier, but I don't know if that's going to happen this year. It would mean leading electricity to the shed, and ideally, building a little side roof to the house to store the bikes, to actually make space in the shed, and there are so many other things we'd like to/have to spend our money on. 

We had a lovely relaxed weekend this week.
Yesterday I went to the shops (on my own!) and bought a wetsuit for Emm in TKMaxx, in anticipation of better weather, and a cute little dress by 'me too'  for a tenner, and baby presents for 2 little girls. It was great to have a little time to myself, I just wish I hadn't spent so much of it buying groceries and household things and clothes for kids. My idea was to just go and get the paper, and read it in starbucks, but I new that wouldn't happen once I was there, too much temptation to shop. (I also have this idea in my head that I want an eReader, not sure why as I hardly ever get time to read! The visiting teacher was mentioning them, and how great it is to be able to change the font size, so I looked at some of them) In the evening P was out, and I brought the kids along to a friend's house, where we had an impromptu dinner party with 3 moms and 6 children. We'd all brought some food, the kids entertained each other and we got to sit down at the grown up table and have a chat and some simple but lovely food, and a little glass of sauvignant blanc.
Today I was supposed to get a sleep in, but didn't get any extra sleep, I'm not good at going back to sleep after being awake for a good 40 minutes, feeding, changing nappies and entertaining Ti while P got Emm dressed, and especially not if there's lots of noise downstairs! P's much better he hardly wakes up to mind T while I get Emm ready...
As Emm was not going to sleep for her nap ("I'm not going to my bed, ever again!") we put the two of them in the buggy and went for a sunny windy walk, and then into the car, to the shopping centre for P to get a new jacket (another success in TKMaxx!) and to have some Piri Piri chicken for an early dinner. By the time we got home, Emm was so tired, she watched one episode of 'Humf' and then went upstairs, even though another one was starting!

If she's tired she'll often say 'I'm not tired' while heading for the stairs. Or 'I don't want to go to bed' while willingly getting into her PJs and running ahead to the bathroom to brush her teeth, she's so funny! 

more health worries

Ti and I spent a week in the childrens' hospital, our GP sent us straight to A&E when I brought him in because of strange flickering eye movements. A&E was hell, it really is a flawed system, where a baby with suspected seizures is sent to A&E instead of straight to the neurology department, to spend 6 hours on a ward with puking and coughing children. A&E was so full that some parents had to stand, balancing their children on their hip while a doctor would examine them! In the evening we were admitted to a ward, where we had a cubicle, as Ti hasn't had his immunisations yet. Having a room was quite lucky, as the ward turned out to have two children with Rota virus (stomach bug that can lead to serious dehydration in babies) and was closed to new admissions the next day, and worse still, was turned into 'the Rota ward' another few days later, having all the other sick babies from throughout the hospital transferred there.

A week of tests revealed that the doctors don't have a clue what's causing his eye movements, but thankfully some of the really scary possibilities like tumors and epilepsy, have been ruled out. On the downside, another eye exam during the investigations showed changes on his eyes, so he has been diagnosed with the same eye disease Emm has. It's been called quite early though, and he was lasered one week later, this monday, which hopefully will improve his chances of keeping his sight. There hasn't been any damage yet, but exudation, which means the disease is active, in one eye. We're lucky it was caught now, i don't know how much damage could have been done to his eye(s) by mid May, which was when they would have otherwise looked at him again.

After the laser operation (Emm had another EUA and FA on the same day) we talked to the neurologist again, and he still couldn't tell us anything about Ti's condition, only that the symptoms don't match anything, really, and they don't know what to look for next. They did mention that it's similar to Opsoclonus, which is often associated with Neuroblastoma, but his tests for that came back negative. Although as different tests were ordered by different doctors, I'm not sure any more whether they said the Neuroblastoma test came back negative, or the tests ordered by the Neurologist came back negative.

We're now to get another appointment for in two months time, unless there is any change to the worse in him. They think he might just outgrow it. He seems to not be bothered by the eye flickering, so I suppose we'll have to wait and see.

We got out of hospital just in time for his christening, we were home a mere 3 hours before the guests from Germany arrived on the Friday evening, but P had done great work during the week and with a bit of help on Saturday morning we had a great feast prepared for the guests at lunchtime. Here a little picture of the buffet:

my mum baked bread and brought it over, as well as some cured westphalian ham, there's a greek and a green salad the godmother brought, eggs from P's mum's hens, pasta salads and a fritatta from P, and lots more. We also had delicious cakes my neighbour made but I didn't get to take a picture of those. 

The tulips in the top right corner of the table didn't quite open up on the day, but half a week later they looked like this! 

Winter Sun

This is how long our shadows were at twelve noon today! But it's good to know that the days are getting longer... Did I mention we got an 'Ecological Calendar' this year? I love it, especially watching how the amount of day light increases, and the different night sky events.

Emm and I had to do some banking today, and added a charity shop visit (very successful, with a 'Peppa Pig' book, 'The Little Red Hen' ladybird book, a tablecloth that might be intended to be embroidered (which is very unlikely to happen anytime soon), some flashcards and a Peter and the Wolf CD, narrated by Dame Edna Everage. We also had a little walk on the beach, which ended in a tantrum when it was time to go back, and I intended to share some lunch with her, in a little cafe (where Emm refused to eat anything, at all, and instead chose to colour Peppa Pig pictures (yes, we're dealing with an obsession here)). Apart from the tantrum, it was a nice relaxed morning for just the two of us!

Her eye appointment went OK, both eyes still dealing with the effects from the laser OP, as they should, and no disease related changes visible during the slitlamp exam. It wasn't nice to get actual numbers for her eye sight (3/60 and 6/60 at the moment, which for a grown up means legally blind), when it seems like she sees all she needs to, but it's all part of the process of getting her all the support she needs. The consultant says the decrease in her visiual acuity (while we weren't told numbers before, her file had 6/24 written in it from a previous visit) is partly due to (hopefully) temporary shortsightedness due to swelling from the laser operation. However, as she grows, and her eyes with her, she is very likely to become more and more shortsighted, on top of the retinal problems she has, and which are also likely to worsen. The optometrist and consultant both were quick to point out how 'very bright' she is, and what great language skills she has for her age, which I think was intended to distract me from the fact that her eye sight is not very good at all. If her eyesight doesn't decrease she should be able to go to a normal school, using low vision aids.

So now I should be free to mentally prepare for the baby, but today it doesn't feel right yet, it's all to fresh on my mind and I'm filling my day trying to get the house and bills organised while trying to spend quality time with Emm, too, all at an awfully slow pace, because I'm really feeling 'heavily' pregnant now! So very different to the last few weeks of pregnancy with Emm...

snow pictures

P says this is the most snow he's seen since he was a little kid. It's certainly more than I have ever seen in Ireland, and I've been here for nearly 9 years... Emm is loving it!

On a not so nice note, the stomach bug that we seem to have avoided for the last two weeks seems to finally have arrived at our house, P is miserable today! Emm and I have met a lot more people just before and after they came down with it and have escaped so far, but it looks like we might all have it for christmas! For most of my friends it's been a 24 hour bug, so lets hope that's all it's going to be... I really hope that if we're going to be struck with it, Emm and I won't get it before tomorrow afternoon, as we just got tickets to see 'The Snowman' at the concert hall in the morning!  Fingers crossed...

Birdfeeders

Today we finally got a proper snow fall, I'd say 6 inches at least, and it's still going. We haven't had any snow to speak of in the last weeks, but it's been quite cold. Lately I've noticed some robins and tits out in the garden, They must have come from the countryside to the village gardens, looking for food! I spoke to my mum, who loves to watch wild birds, and she said the best way to feed them is to make some fat bird feeders. I bought some cooking fat and bird seed, got small clay pots, string and twigs from the garden, and checked my baking cupboard for oats, and some leftover nuts and seeds (great way to use up the slightly out of date ones!). As it's nearly christmas I threw in some raisins as a treat, too! you can also add peanut butter and any unsalted unroasted nuts and seeds.

You melt the fat (Vegetable fat, lard, beef drippings, whatever you can get your hands on.For today's batch I got some free cutoffs from the butcher, and added the rendered fat to the bought stuff) over a very low heat, then stir in your seeds, chopped nuts and oats. Leave to cool. You use the twig and string to hang the pot from a tree, with the twig serving as a climbing branch for the birds. Hard to explain, easy to show http://www.geo.de/GEOlino/weihnachten/52056.html this link shows it quite well.













During my first attempt yesterday I hadn't looked it up properly, thinking I remembered it all from when my mum made these when I was a kid. I forgot to put in the little branch for climbing, and also didn't let the mixture cool down enough before filling the pot. The birds don't seem to mind so far. I made another one today, and this one's by the book, just waiting to set on top of the garden shelve.

We had Emm's follow up appointment last  week and the professor said her retinas are reacting to the laser treatment as they should. He isn't the one doing her long term treatment plan, so he wasn't answering any questions, in fact, when I mentioned we might get referred to London he nearly seemed insulted and wound up the appointment very quickly. I don't think even as a professor, he has any reason to feel offended if parents are looking to see a specialist, if he has only had one or two patients with this condition in his entire career... I forgot to ask for the October photographs of her retinas and he didn't offer them either, I'll have to call the nurse on tomorrow and ask will she email them to me. I'm still annoyed the professor didn't take any before and after photos during the operation, and didn't repeat the angiogram, which is what the consultant had said would be done initially... We see him again in January, so I think we'll just have to wait until then to find out what the next steps will be.

I had an antenatal appointment on Friday, and the midwife reckons this baby will be bigger than Emm was! It's lying oblique at the moment, she said that's OK at this point. I certainly get lots of kicks and I think it's still twisting and turning a lot, sometimes it feels like there's just not enough space! I feel as big as I was just before Emm was born, and I still have 5 weeks to go!

making christmas cards

I've been experimenting with using Emm's artwork for christmas cards. My baubles didn't quite work out, but I was very happy with the snowman,


so I made a little series! I used two of her drawings that had only pale colours, and mostly blue, on white. I cut it into wide strips so that I'd have a rough guide to for the size of the circles, which I then cut freehand.


I used red card (which came with matching envelopes from a bookshop in Germany, 3.45€ for 10 about 2 years ago) and glued three circles on, trying to make sure to get a bit of texture by mixing and matching darker and lighter circles, or by turning them so the lines would go in different directions. The carrot noses are done with white glue and red glitter, everything else is drawn on with black ink.



Sure to delight grannies and aunties!

I love red and white for christmas decorations, but I might let Emm loose with lots of shades of green, and then cut shapes to make christmas trees, because I have lots of cream coloured cards in my paper crafts box! I'm not really a big fan of glitter, but it seems essential in irish crafts for kids (maybe in Germany, too, but it wasn't around when I was little...). Emm enjoys the stuff greatly, so I'm sure the christmas tree designs will feature some, too!

I enjoyed the bit of peace and quiet during her nap time, making the cards, ignoring my floors which are in dire need of mopping...

I've got a super itchy eye, which I'm pretty sure I got yesterday, ironically, from the hospital for Emm's eye operation! They had the air conditioning set to heat the place full blast, it was worst in the tiny play room, imagine sitting under a hair dressers dryer hood! There was no getting away from it, and now my bottom eye lid is swollen and itchy, can't think of the name for the condition. The pharmacist gave me some over the counter drops to calm it, but so far it's not making a difference! At least now Emm doesn't feel too hard done by, having to get eye drops, as she's not the only one!

Eyes update

We're just back from the hospital, and Emm had laser on both eyes. She was a very brave girl, didn't cry once or make a fuss, with lots of sets of eye drops, and blood pressure measuring and general taking her away from the play room and toys.
It's a bit strange, she was booked in for another EUA and FA, and if necessary they were possibly going to do some lasering. Then they phoned us on Monday and said they spoke to the specialist in London and he recommended they laser the left eye and see about the right eye. This morning we noticed the EUA and FA wasn't on her file, but the nurse added them. After the OP the Professor came down to speak to us and told us the OP went well and that he'd lasered both eyes. When I'd asked about the pictures he said he didn't take any! I'm a bit annoyed, as this was what our new consultant had ordered in the first place, a second set of pictures to compare and assess whether there had been any change!
We're glad they did the laser and that the Professor said he didn't 'see' any change, but I really would have liked there to be pictures to show it. Especially if we want to get a second opinion abroad it would be good to have some 'before and after' pictures from today. Also, I hardly even bake a cake without taking pictures, so I thought it strange of a surgeon doing extensive laser surgery without documenting the process... Maybe they were too busy? The ward certainly was full today...
He agreed to let us have copies of the images, but I'm not sure if he will have them digitally. I wanted him to just email them to me, but he was saying 'I'll have them for you next week, at the appointment'.

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.

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 http://mydutchbakingblog.blogspot.com/2010/02/ontbijtkoek-dutch-spice-bread.html, 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...

eyes update

After two emotionally draining days in the hospital, (a morning for the MRI and until half 6 in the evening for the eye exam) we got some good and some bad news. The MRI brain scan seemed to be clear, at first glance from the radiologist, which is a big relief. The fluoresceine angiogram did not show up any abnormal blood vessels, which means if we're dealing with an exudative retinal disease, like it is at least not active at the moment. Coats disease was ruled out by the consultant, which is good news as well. The photos they took of the back of her eyes however showed that she indeed has two retinals folds, one on each eye, covering the macula (area of central vision, the area you use for fine detail, like reading) reaching all the way to the optic disc. There's also scarring of the peripheral retina on both eyes. The specialist thinks it happened before birth, and may not lead to further scarring or damage, but this kind of bilateral retinal folds is very rare, so she is going to consult another ophtalmologist to look at the photos. Emm will need 'help with her schooling' is as the specialist put it, they can't say how much she actually sees at the moment. We don't know will she be legally blind, or visually impaired, or if she will require a special needs assistant in school. She seems to be doing OK at the moment, as far as we can tell, so we can only hope that there won't be any deterioration to her vision.

They drew 5 vials of blood which are being sent off for testing, but she wouldn't tell me what they are testing it for. We are guessing genetics, or maybe antibodies to a virus, as there are some viruses that can cause retinal damage to the unborn baby. I asked a nurse could I have a look through the file, which was one the counter, and she said I'd have to make an official freedom of information request!

That peed me off quite a bit. But I was in no shape to argue, as I'd been crying on an off the whole day, beginning as soon as we walked in, with the registrar asking for a 90€ fee, that I had not been informed about in our appointment letter. I really am pretty useless under stress (and under the influence of pregnancy hormones). I was so upset that they would ask people to pay a fee when it's tests that one of their consultants has ordered, without warning the parents beforehand, 90€ is a lot of money and there are more costs involved, with travel costs and days off, and not everybody can just pull out  their wallet and present that kind of money. It turned out that, as we have her covered under my husband's health insurance, the fee was waived, but it took some phone calls to get her policy number, as we hadn't been told that the health insurance would be involved in this (all the previous appointments, including the MRI, had been free of charge). The registrar was pretty unfriendly with me, saying I should know that there's always a charge with the day ward, and that I'd have to pay it every time (setting me off again, realising I'd have to come for more tests with her!).

I'm so glad P was with me! He kept his head and let me cry it out while he took Emm to the waiting room which had lots of toys. She had been fasting since 7 that morning, with no water after 9.30. We were asked to come in at 11.30, and we'd been told that they'd start the procedures around one, or one thirty. That actually meant that they started the 'list of patients' at one thirty! Emm's name on the board had all the boxes ticked and we expected to be next, for ages, Emm soon turning into a very unhappy, cranky, angry child being so hungry, at half two we were told that it wasn't her turn for another while, and that we should try to get her to sleep a little, at half 3 another little boy came back from theatre screaming, really upset, and not stopping until it finally was Emm's turn at ten to four. I was allowed to go into theatre with her until she was asleep (with gas), but was then immediately more or less frogmarched out to the staircase, and asked to wait downstairs.

I couldn't bear to be any further away from her than strictly neccessary, and after P tried and failed to take me for a walk we waited right outside the elevator doors. She was crying when they brought her down, at about a quarter to five, and it took a little while to settle her. She finally took some water, and then some toast, around five. Ten hours of fasting is a really long time for a not even two year old who's only 10.7 kg! We were allowed to leave at half six, and Emm was back to her usual form by then. P and I hadn't eaten all day either, so we stopped at a burger king on the way home, not our usual choice of venue, but we were so hungry by then, we didn't care... Emm loved it, of course, and ate lots of fries and played happily with her crappy plastic toys, but she's not a fan of the chicken bites (they are vile) and wouldn't have much of her juice, either. We finally got home around 8 that evening and were fit for nothing, which is exactly what we did, after putting Emm to bed. I actually went to sleep soon after her, around nine, and P stayed up a little longer, having a beer and watching a DVD, winding down.

We've been googling some more but it really must be an extremely rare occurence, as we can't find any more information! I have however found one similar case in Germany, and contacted the parents, to find out what they've found out, about their daughter who is only a little older than Emm.

a break from worrying ourselves sick

we're making a conscious effort not to worry ourselves sick this weekend. It's not long now until the tests, the MRI is on Tuesday, and the eye exam under general anaesthetic (including fluorescein angiography). We've done all the googling we could, and talked every day about what it could be and how it might affect her, and I've cried every day, and lay awake every night, and it hasn't changed a bit about her eyes. I'm so glad I got through to a nurse that took the time to pull Emm's file and explain what the consultant wrote and what tests she ordered!

We're now doing what we knew we should be doing all along, look after her and care for her and let her have fun, and not pull ourselves apart worrying about things we can't change. It's ironic, that we got the news just after I finished reading 'eat pray love' a book all about acceptance and living in the moment, and everything i'd learnt went right out the window... But I'm getting back to it.

We've made no plans, we're just at home, spending time with her, playing, baking (apple cake), cooking (chicken and chorizo gumbo (loosely based on this recipe, ignoring the turf and using free range chicken portions instead)), going into the garden, the beach, a birthday party yesterday... this evening we've put down a nice fire, the first this autumn, and let Emm stay up a little longer, letting her enjoy the fire. She was playing with her Clipo bricks, for a good hour and a half, chatting non stop, repeating all the words and phrases she learnt today.

I'm not making plans for her birthday next week, we'll play it by ear. There will be a small party of course, and  a cake with candles, and her auntie and uncle are coming for the weekend, but I'm not planning a big party for all her toddler friends. We've also ignored Halloween so far! But we might get a pumpkin tomorrow, and we're going to look for shoes for her, so maybe we'll find a little costume, too!

Now, back to enjoying the fire and talking to my husband, and paying some attention to the kicks from my unborn!

scary times

Emm has been cross eyed  since birth, sometimes more, sometimes less. After finally getting a referral for the eye clinic she was diagnosed with a retinal fold on her right eye, which disturbs her central vision.Her left eye was declared perfect and I was consoled with sentences like 'she'll be fine, she has perfect vision in her left eye'. We were advised to patch that eye for two hours a day to make her learn to use the weaker eye, too.

We had another eye appointment for Emm this week, as at the last test she seemed to see less on her 'good eye', probably due to the occlusion therapy, which was stopped. So for this week she got a 'double appointment', meaning she first does the test where she 'reads the charts' (pictures of fish and shoes and houses and so on.), and then goes in to the consultant who has a look at her eyes with lenses and lights. For that they put eye drops in, to dilate her pupils. She seemed to recognise a lot more picture with her 'weak eye', than with her 'good eye' again.

I had thought that maybe Emm had just had an off day where she wasn't as interested in the charts, but after the consultant examined her she said in addition to the fold at the back of her right eye, she was now seeing another one in her left eye! She seemed confused and wondered if she might have missed it the last time. I can't imagine she did as she had a good look at drew each eye fore me in her file, to explain what she had found. It was meant to be a congenital thing, that happened before birth, but finding a second one, now at 23 months, doesn't fit in with this! She wouldn't tell me what she suspects but arranged for a different eye exam, where Emm will be under a general anesthetic, and an MRI brain scan, both to be done within the next two weeks!

Of course i burst out crying but she wouldn't say any more, just that she's sorry about having bad news for me and that she won't be able to say anything until after the tests. Since this I've been crying my eyes out, and fool that I am, googling everything about eyes. The condition that matches the consultant's drawing most, is a persistent fetal vasculature, PFVS, a little stalk that's present while the eye develops, in the womb, and normally disappears before birth, but persists in some cases. The way I understand it's a bit like scar tissue, and over time, as the eye grows, will pull the inner eye out of shape, and distort her vision more and more! It then can also lead to glaucoma, and complete blindness. Or PHPV, a similar condition with clouding of the vitrous... It could also be a kind of vitreo-retinopathy, a degenerative condition that can lead to blindness. I could have coped if this was happening in one of her eyes, but in both! I don't know if this is what she has, but all the other eye conditions in infants and children are even scarier, being linked to genetic syndromes, some in combination with loss of hearing, too!

This is such a terrible time, not knowing, not being told anything, a brain scan for my little baby! I keep sending up little prayers, hoping they'll find it was all a mistake, and crying my eyes out realising that that's very unlikely. I sometimes see Emm looking at small items really close up and i find myself taking them away from her, because it freaks me out so much. She is such a bright smart happy little girl, loving her drawing, and books, knowing her colours and counting to ten and even recognising some letters, it just can't be right that she shouldn't be perfect and healthy! She's always picking flowers and looking at bugs and leaves and asking what everything is...

I've been crying at least every two hours, and I'm starting to worry it's not good for my unborn baby, 26 weeks today. It doesn't help that my cousin and her family are visiting, so when they are in the house  I really have to pull myself together. On the other hand, Emm is having such fun with her cousins, who are 4 and 8, she doesn't notice my state, as she might otherwise. Then I look at them running and dancing around, and admiring each others' drawings, and wonder if she will still be able to do that in 2 years time. Then I have to find an excuse to leave the room and have another cry, and splash a lot of cold water in my face afterwards.
I'm glad I'm on a career break at the moment, I wouldn't be able to function in the office, at all!