Oct. 16th, 2017 06:25 pm
emma_in_dream: (Henry Moore)
Arrrrrgh, so Ruby's orthotics appointment at PMH will not come up until next July.

I feel a strongly worded letter to the Minister of Health coming up.

Also, can anyone recommend a good, cheapish orthopedics place? The quotes from the private providers recommended by PMH were all around $500 and I was really thinking more like $100.


Oct. 9th, 2017 06:21 pm
emma_in_dream: (steve)
Sometimes I think that we may have a few too many medical issues….

Last week we met with a new paed about Ruby and he went through the list he had summarised from her file. NF1, coeliac disease, late to walk, weak hands, and dust mite allergies.

I had no recollection of her being tested for dust mite allergies. Looking at my blank face he was all, so shall I assume no action has been taken to improve this severe allergy?

Me: I am so sorry – I don’t even remember her being tested. But she has so many tests…

Him: Oh, wait a minute, nope, this isn’t her file.

Me: Really, is there another little girl with the same symptoms as her?

Him: No, most of the file is hers, just not the dust mite allergy bit which was inserted by mistake. Now, did you have any issues to raise?

Me: This sounds ridiculous, but I am concerned about the dark rings under her eyes and her watering eyes. I was wondering about allergies and whether you could run some tests?

the week

Nov. 14th, 2016 05:17 pm
emma_in_dream: (Default)
So, what a rollercoaster this week has been.

On the bad side: the American election, the triumph of hatred, racism and misogyny, and the inevitable effects on Australia’s drift to the right. We finally got to go to the incontinence clinic and they think that Ruby has two to five years to go until continence. We also got to see the orthopaedics people who said that there is nothing that can be done to relieve the pain in her feet, knees and hips. She just has to live with it. The lion at the zoo died unexpectedly.

On the good side: The thirteen month wait to get into the incontinence clinic is over. I was so depressed that I went to the beautician and pampered myself (for the first time in eight years). Ruby likes her new pet fish. Hilary won the popular vote. Because Americans don’t have compulsory voting, it’s not 50% of the population who voted for hatred but only 25%. Because I had the day off to go to medical appointments with Ruby, I also got to go to the school excursion to see *Snugglepot and Cuddlepie* which was surprisingly good. I particularly liked the way they made the Banksia men still scary but less racist. Here’s a picture for non-Australians, with bonus Snugglepot and Little Ragged Blossum.


Yep, that’s about it on the good side, a less racist Banksia man than was envisioned in 1915.

3 Things

Oct. 6th, 2016 05:56 pm
emma_in_dream: (alexa)
1, The art is up at work. I’ll take some photos. It seems like my sole achievement since July.

2, I have had some free time to read about ADHD, sensory processing issues, etc. Did you know that some studies link NF1 and ADHD? How very interesting. And how much I hope Ruby is not also diagnosed with ADHD. (Though I do not think it is likely).

3, I watched some of the extras on *Gosford Park* and part of the reason it is so astonishingly accurate is that they found a handful of British folks in their 80s who had been in service above and below stairs in the 1930s. They were literally able to instruct on how eggs were hand beaten to make custard rather than mayonnaise; how wine was filtered; the way measures were used to ensure the table was set evenly; the shade of a footman’s ties; how an under-house maid would address a housekeeper.

Also, of course, the way it was filmed and recorded ensured that all the actors were aware they could be being filmed at any time, so they are continuing their plots in character at all time. No wonder it is such a champion of a movie.
emma_in_dream: (Singin')
First the very good news. Ruby had her most recent eye test and there is no sign of the visual disturbance associated with NF1. If she doesn’t get it by the age of ten, she is unlikely to get it. So she is half way there!

Then the less good news. Ruby and Pearl both have colds and spent the day resting in front of the fire at my parents’ house. Pearl likes to lie down, literally in the cinders like Little Polly Flinders, so she is extremely warm and her clothes are filthy.

I, for one, am sick of this month of illness.

3 Things

Jun. 7th, 2016 06:18 pm
emma_in_dream: (Leia)
1, We went to the WA Day celebrations at Elizabeth Quay, which I really enjoyed. I feel that Ruby is making great strides(!), as she managed to walk around for an hour before she got tired. This was probably the longest outing she has made and a big step towards being able to do things like other people.

2, In the afternoon the weather changed and there was only one other family at the park, playing in the rain. I remained under a shelter, reading an Agatha Christie, as the kids built a massive dam in the mud.

3, Lovely long weekend.
emma_in_dream: (bobby)
Very proud of Ruby today. She had her Griffiths Developmental Test which she aced despite being under the weather with a cold. She was a champ at everything other than making a bridge out of blocks. She did great threading, pattern copying, tower building, word descriptions, and her answers to the open ended questions were so interesting (and also different to the ones Pearl gave when she did it two years ago).

Q: What would you do if you were running late in a bus?
Pearl: Hurry.
Ruby: Walk. Or a baby could go in a pram. Or a car would be quicker.

Q: What would you do if you were lost?
Pearl: Ask God to help me.
Ruby: Call for help. Tell them to find my mum.
emma_in_dream: (sense)
February has been a lovely month with (touch wood) no medical appointments.

Aside from one unscheduled trip to emergency to have a Barbie accessory removed from Ruby’s nose, we have not been to a doctor (touch wood).

It is amazing how easy life is like this. On the days when I am not at work we do not have to rush from appointment to appointment. Instead, we saunter about at a leisurely pace, enjoying dance classes for Ruby or doing a little light shopping. This is the life!

No wonder I have been a creative *hurricane* over the past month. Everything is so easy. Can this be life as other (most?) parents experience it?

Anyway, next month is already shaping up with the typical one medical thing per week profile, but I am hopeful that we may have restful months like this more often. Pearl now has virtually no appointments and surely, one day, Ruby will also have fewer.
emma_in_dream: (sense)
I aimed to have grace this year. I had none.

Once again, the year began with a fairly serious illness, followed by a new disease, followed by major life style changes.

We continue to go from one medical appointment to the next. I know my way around the paediatric hospital. In December I lran out of energy for medical appointments. I really resented the last two and had to drag myself into Ruby's pre-Christmas EEG.

I did not join Yuletide this year because I was in such a state of sodden exhaustion in October and November that I simply could not face one more thing.

I am very glad it is now the holidays, because I really need them.

My resolution for next year is for grace again. And for some ability to plan ahead with the children rather than just running with the easiest course because we are so busy with medical nonsense that we have no time for anything else.

Of course, all this is contingent on no one in the family developing another bloody disease. Good health for all of us, that is what I would like in 2014 because I am really sick of spending my life doing nothing but medical stuff.

Deep breath. Grace.


Dec. 2nd, 2013 08:34 pm
emma_in_dream: (X Files)
Ruby broke my heart the other day, when she asked when the doctor would make her better from coeliac disease. I had not realised she had not grasped it was for life. She now has a picture book explaining a bit more about it. I may also have to revisit the story I tell her about the pink cat with the sore tummy who Noddy drives to the doctor.

Also, I noticed that Pearl is confused at the difference between NF1 and coeliac disease as she conflated muscle weakness and eating wheat. I won’t try to clarify it until I find out if the children also have (as the State geneticist suspects) x chromosome linked hypopotassemia. Seeing the geneticist was really interesting, and a bit like therapy in that I got to talk at length about my kids’ many health issues and how it was a bit of a rollercoaster when you never know what will be diagnosed next.

At the same time, I do feel a bit like we are MUTANTS. But without neat abilities like being able to juggle fire or read minds. Perhaps these things will kick in at puberty for the girls.

Life Update

Jul. 9th, 2013 07:47 pm
emma_in_dream: (Default)
I am feeling increasingly anxious about the children which, I realise, is because I have not had any bad news about them for months. It’s been ages since Ruby was diagnosed with Coeliac’s disease and I have this terrible feeling the other shoe is about to drop.

This state of mind could rightly be called paranoid or over-parenting, but all my experience teaches me that every few months there is some kind of health crisis with children. It irrationally annoys me when people say that parents should just be chilled out because children basically just develop on their own. My own experience is that my children have been sick from literally the moment of Pearl’s birth, when she was whisked away to be worked on so she breathed. This was followed by nine days in the hospital while various health professionals trying to get her to feed and fed her through a nasal tube and my dawning realisation that there was something wrong long-term. (Turned out to be hypotonia).

After that I spent months going to various doctors and having them imply that I was an over-protective first time mother until, suddenly, when she was 14 months old, they turned around and agreed that yes, there was something wrong. They leapt straight to worst case scenarios which it turned out not to be. And indeed we’ve never had a satisfactory diagnosis for her real, ongoing hypotonia.

I find it very annoying when people say things like ‘well, they all learn to walk in their own time, don’t they?’ This may be *generally* true but, in my experience, no, they learn to walk after months of physiotherapy, while wearing foot supports and that hard-won ability can be undermined very easily, as when Ruby lost the ability to walk while prostrated by Coeliac’s disease. So Pearl got on her feet at 22 months and Ruby at 22 months, then became unsteady at 24 months, lost the ability, relearned at 28 months. This is not a trouble-free and inevitable trajectory.

Constant watchfulness combined with immediate intervention seems to be the only way to proceed, so right now I am trying to anticipate the next likely blow and also be calm. A state of cat-like wariness, like Marg Simpson’s, is what I must aim for.
emma_in_dream: (Default)
If the odds of coeliac disease are one in 150 and the odds of NF1 are one in 3,000, are the odds of getting both one in 450,000? Is that how it works?


May. 15th, 2013 08:02 pm
emma_in_dream: (Default)
Do I have a friend with more coordination than I have, who could teach my children to throw and catch? I am sure the fact that I shriek and duck every time the ball comes at my face does not make it easier for them to learn.

Life Update

Apr. 3rd, 2013 07:47 pm
emma_in_dream: (Default)
Short version: everything is going so well!

Long version: The difference in Ruby is phenomenal. She has gone from being a pale, sick girl who only wanted to lie in my arms and who literally was too weak to walk, to being a bold, plump toddler in the space of a month.

All year I have known something was wrong. Even last year, actually. I could see she was increasingly reluctant to walk. I attributed this to her NF1 and I spent a long time getting her new orthotics and boots. The boots were particularly frustrating as they took 10 weeks to arrive. Though, having said that, there was a $300 discount on the $350 boots so there is some upside to being stuck with an inefficient universal health care system. All the while, Ruby was going backwards. Not developing, not even holding her own, but becoming less happy, less mobile and more clingy.

Then she started vomiting, which got worse and worse over the course of the month. By the end of the February she couldn’t walk and would only lie in my arms saying she felt wretched. I took her to the GP twice and the hospital twice. The second time she was down to 9.4 kilos (10.5 kilos being the bottom 3%) and still dropping. By this stage I was convinced it wasn’t a virus – I would have got it if it had been because she threw up on me virtually daily.

I thought it was a tumour so the relief when it wasn’t was enormous. They mentioned the possibility of coeliac disease but sent us off without any treatment plan. I decided to try removing gluten because I was desperate. I could see that within a week she would be in hospital on a drip because she could not go on as she was.

The results were almost instantaneous. She only threw up one more time after I began removing gluten, and her dire rear went after about three weeks. She ate like no child I have ever seen – with a desperation really – because she was making up for not having absorbed food for so long. She ate almost constantly while awake for the first two weeks, and has only begun to slow down now to the point where she can go, say, a half hour without eating. She has stacked weight on – is now heavier than she was at the beginning of February.

Also, she has begun to caper around in her new boots. She has had to relearn how to walk with straight legs instead of crooked ones, and she is doing a great job. She even dances now. We went to the park and she went on the play equipment instead of sitting on my lap and crying! I am so happy.

So far the gluten-free diet has been relatively easy but expensive. Hopefully it will get less so now that Swancon is over and I can concentrate on preparing food myself rather than buying pre-made treats.

Would it be nice if Ruby did not have two separate, fairly significant medical issues? Yes. But coeliac disease seems relatively easy to manage and the difference in her is so clear that the paediatrician decided there was no need for the bowel biopsy (with attendant general anaesthetic at her age). Between the high antibody results in her blood test and the massive improvement in her health on a gluten free diet, the paediatrician agreed to a tentative diagnosis without further testing at this time.

Every time I look at her I am just so incredibly happy to see her so healthy and happy in herself.

(Also Pearl is pleased that Ruby is well enough that there is finally some attention for her as well!)
emma_in_dream: (Highlander)
1, Going to work in the new office, a longer trip.

2, Becoming increasingly worried about Ruby's vomiting. It's like she just empties her tummy twice a day.

3, Trying to flag the attention of doctors to Ruby.

4, Inadvertently leaving the door to the freezer open all day and then having to thaw the machine and throw out 31 packaged meals I had thriftily stored up.

5, Taking the kids to physio, OT and the dentist (good teeth!).

6, Running two thousand and seventy three loads of washing through the machine.

7, Sprinkling tea tree oil about the house.

8, Playing with the new computer.


Mar. 8th, 2013 06:49 pm
emma_in_dream: (Default)
Ruby has now been vomiting for twenty seven days. Twenty seven days, people. She has lost over a kilo in weight which those who know her can see is not good.

After a very long time of taking her to the doctor and being told it was a virus, we today spent six and a half hours at the hospital while they did some investigations. They still have no idea what is causing it but the very good thing is that they did a CT and no tumours in her little head!

I feel completely wrecked, partly because we were at the hospital for so long and partly because I feel like this vomiting and weakness has been going on for ever. I would just like it to end. As, I am sure, would poor wee Ruby.


Jan. 22nd, 2013 07:29 pm
emma_in_dream: (Default)
The results of Ruby’s genetic test finally came through – only a ten month delay there so it’s good that I am totally not surprised at the confirmation that she does indeed have NF1.

Apparently the next step is for me to get tested. I am really hoping I do have NF1 because then ha! if I had a time machine I could totally travel back in time to when my evil sports teacher gave me a prize for being the worst tennis player she had ever seen - oh, how everyone laughed, in some cases through gritted teeth – and say See! I have a genetic condition! Now who feels like a bully?

(I should add here that this incident reflects her kinder, more professional aspects as a teacher. There was also the incident where she nearly let 40 children in her care drown at the beach. Seriously, the headline on the local news that night was that a record number of people had been rescued by the surf life guard. And who could forget the time she turned her back on my sister as she had a fit in the pool and told her not to be an attention seeker. As far as I know, she is no longer a teacher because the last I heard was she had to leave the country after having sex with a student. What a champ.)
emma_in_dream: (kate bunce)
My New Year's Resolution is to handle my life with more grace and balance. Particularly, I want to be less anxious about the children's health and well-being.

I am well aware I am an anxious person with a tendency to see the worst case scenario and exactly how I am to achieve a state of balance is not yet clear to me.

I have tried getting to a counsellor but I have not found it helpful. What I am looking for is some practical strategy for not freaking out over the kids but what she told me is that I have to accept the consequences of my choices. Which I kinda feel I do every day.

What I need is some way to deal gracefully with living in a state of eternal uncertainty - the medical tests will never end, there will always be a possibility of something bad happening to the girls,* the endless deferral of what I would like to do with the girls in favour of medical stuff we have to do.

* Please do not remind me that something bad could happen to anyone at any time. Yes, my girls have the usual likelihood of being struck by lightning and on top of that elevated probabilities of tumours.
emma_in_dream: (fred day)
We went to the neurologist yesterday and it was very good news. He thinks Ruby's troubles with walking were due to an inner ear infection. My mind (and my mum's) had of course gone straight to tumour on the spine so yes, yes, yes, what great news.

Also, 'usually' if a tumour was going to affect her vision it would already be visible.

She was measured (twice). Both measurements were well below the bottom line of average growth but the doctor agreed the best thing to do would be to wait until she is old enough to stand still so we can measure her accurately. At the moment she perceives this as a dreaded medical procedure and fights. Also, he projected her adult height, if she keeps going at this rate as 148cm which is certainly fine for an adult. Maybe a bit problematic in a boy, but fine for a girl. So, good news all round.

Daily Life

Oct. 15th, 2012 07:15 pm
emma_in_dream: (Gable)
The situation at home continues to be rocky. This wretched cold has morphed into a hacking cough which keeps me awake all night, and, indeed, makes my chest ache. I have now got some extra strong cough suppressant which I really hope makes a difference.

I have been feeling like I am trapped in a never-ending cycle of exhaustion and sickness and crisis. I am really hoping that things turn the corner soon.

I have also done some thinking and I have realised that the reason that I have struggled so with the girls’ diagnosis is that it came in such a shocking way.

I got the diagnosis on a Thursday. On the Friday I rang back to ask whether he was sure they both were affected (he was). On the Saturday I got a call to go in to the hospital with Ruby that day, for tests to see if she had tumours on her spine. That was a worst case scenario, and, in retrospect, it primed me to think of NF1 in the worst possible way.

Also, the trip to the hospital was a nightmare. Ruby didn’t actually get the MRI at that point but she did get treated so roughly by a doctor there that she has developed a hatred of medical procedures which is unfortunate in a child who has to have so many of them. Pearl was dumped summarily at my parents’ house for three days and she became massively, massively insecure and clingy. For months afterwards she would freak out when, for instance, I fastened her seat belt and then walked around the car to get in. That five second journey away from her would be enough to make her start crying. She would lie in her bed calling out to me at five minute intervals ‘Are you in the lounge or the kitchen? Where are you?’. She is much better now.

But my basic point is – we leapt right in the deep end of NF1 so no wonder I have found it so depressing and overwhelming.


emma_in_dream: (Default)

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