Friday, October 29, 2010

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.

both babies dressed up for halloween

Emm went as Pippi Langstrumpf (Pippi Longstocking). To get her fine straight hair to stay in braids I soaped up my hands and rubbed them through her hair, then plaited it. I pinned the two plaits up with bobby pins, and sprayed the lot with hairspray. When we arrived at the party I took the bobby pins out and the plaits stayed sticky outy for about an hour. The freckles are done with my eye liner pencil. We already had the cute little wrap dress, the pockets and the patch are just roughly sewn on with embroidery floss. She's wearing red tights, with stripy long socks (a too small stained pair of tights cut up!), and her winter boots.

For baby number two I just painted a pumpkin face onto an orange top, and flashed it when appropriate.
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Sunday, October 24, 2010

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!

Friday, October 15, 2010

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!