emma_in_dream

The hardest part of the week is over. Ruby had her MRI and she was so good - she stayed still for the whole thing. Not a single test had to be redone.

What a great kid.

Now, on to moving house...

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?

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.

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.

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.

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.

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?

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!)

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.

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.