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.

3 Things

Jul. 17th, 2012 06:57 pm
emma_in_dream: (Default)
I will try doing the three things meme.

1, As I am doing my taxes I marvel at how few our out of pocket medical expenses have been. Going through the State Child Development Centre has been great, and this whole experience makes me appreciate our universal health care system even more.
2, Ruby is such a practical kid, really cleverly finding a way around her inability to walk. She now uses a walker at home and at her grandparent’s house she rides on her tricycle. With these devices she now has complete mobility and can get wherever she wants. She much prefers walking to being carried and can get as far as the rubbish bin in our complex (though not into the common area where she wants to play because the wheels get bogged in the grass). She can also dance by bobbing up and down wildly while holding on to her walker with one hand.
3, Inspired by the lyrical locavore and sustainability blogs I have been following, I have planted one orange tree at my parents’ house. I also plan to plant a lemon tree and a mulberry. Come the apocalypse, I’ll be fine for citrus and berries.

Stuff

Jun. 17th, 2012 07:42 pm
emma_in_dream: (simeon solomon)
I will be going for a refurbished Mac, though, now that I've had my MacBook fixed I will put off the time of getting another for a while. Otherwise it's a waste of the repairs.

I look forward to the time when Ruby can walk as I am sure she will eat less dirt when she is not on the ground.
emma_in_dream: (Bouguereau)
I was thinking that this year has been hard. Then I realised that was because it went like this.

Ruby is FAILING TO THRIVE! She has a neurological disorder! OMG, quick do an MRI, she may have damage to her spine! Brain tumours! No, no need for an MRI! Trick! You really do need an MRI! But it’s OK! Only watch out in case she goes blind! But without worrying about it too much – just maintain a state of zen-calm and cat-like awareness simultaneously! Also, do lots of physio! Because your baby is developmentally delayed! And she may get a horrible, disfiguring growths all over her body! But don’t worry about it because there’s absolutely nothing you can do! Also, your baby is FAILING TO THRIVE! And don’t forget the physio! And remember TUMOURS!


Meanwhile Pearl is NOT DOING WELL AT KINDY! And she has a neurological disorder! OMG, panic! Only, not! Watch out for the tumours on her optical nerves because she might go blind! But don’t freak out about it because she will pick up on your anxiety! And remember, you’re in it for the long haul because she could get tumours at any point in her life! Ha! Also, don’t forget the occupational therapy because she needs it because she is NOT DOING WELL AT KINDY! And the barrage of developmental tests! Which show she is kind of normal so relax! Only not because she may get horrible, disfiguring growths all over her body! But there’s nothing you can do about that, so do some occupational therapy instead! Brain tumours! Because you need to talk to the teacher again because she is socially awkward! And NOT DOING WELL AT KINDY!
emma_in_dream: (simeon solomon)
Currently her vitamin D level is 107 (normal 50+), iron 15 (normal 5-25), calcium 2.31 (normal 2.15-2.6), and haemoglobin 127 (normal 110-145).

When she was little I thought blood tests would be easier when she was old enough to understand why she has to have them. Now I still find it hard - I take her in and she tries desperately to explain why she is actually very healthy and the doctor doesn't need to check on her, then she sighs and says she will try to be brave.

She also did the Griffiths developmental test last week. Scored fine (low problem solving skills boosted by high verbal skills) but the test itself is a grueling marathon of pain.

Ruby on the other hand is going great guns, cruising about like a pro. The physio thinks it highly likely she will walk before she is two.

I do feel that we go from one medical appointment to another, but hopefully this will end eventually.

NF1

May. 2nd, 2012 01:58 pm
emma_in_dream: (kate bunce)
Ha, reading over the information for parents on NF1 and school I had a sudden realisation. It may well be that I am not just really stupid at maths. It may actually be that I am one of the 50% of people with NF1 who have learning disorders in areas such as reading, writing or maths (usually just one of these).
emma_in_dream: (Gable)
So Pearl has been back at school for one day and the routine of stress and having to do too much has resumed.

The teacher would like her to get a teacher's aide. My first response was horror and instinctive denial but probably it would be for the best, not just for her but for all the kids in the class room.

So I am off to get documentation on NF1 and her history to support the application.

I do feel that miserable sometimes and I know it is because I am comparing the wrong way. I keep looking at people whose kids are healthy and whose experiences are straightforward whereas I should be comparing downwards.

1, I could live in America where I would have all the medical stuff but also be fighting with insurance companies who seem, over there, to be forces of pure evil.
2, I could have a child with a really serious illness.
3, I could have, I don't know, unsupportive husband or my leg might fall off or something.

But, really, bother. This is just another of the endless hoops we have to jump through.
emma_in_dream: (Default)
*Stretches arms out* - this much, people!

During the school holidays we were about 50% less stressed as I didn’t have to hurl Pearl out the door in time to get to kindy two days a week. Also, she was not rat-tired for the two days following. See how that frees up several days? Brilliant!

Because we were under so much less time pressure we could concentrate developing daily life. And both Pearl and Ruby leapt ahead in multiple areas.

Pearl – finally showing signs of being completely toilet trained during the day. It’s only been since July last year so the prospect is an exciting one. She has earned multiple My Little Ponies with her sticker chart for poos. She is actually disappointed if she misses an opportunity to get a sticker.

Also, I have put in *massive* work on expanding the repertoire of foods she will eat and she has made progress. Ham if cut into the shape of teddy bears! Lettuce if arranged as the antennae of butterfly cheese sandwiches! Cucumber if arranged as a salad person! Beet if boiled, pureed, and put into pink pancakes! Melon if placed in a milk shake!

I am worried that we may revert in this area as planning the meals is time consuming and creating the little masterpieces even more so. Do you know how hard it is to cut out a butterfly sandwich in artinisal bread? Being a parent is tricky.

(BTW: If you are rolling your eyes and thinking that I should just make her eat it, I would point out that it is impossible to ‘make’ someone else eat. Or sleep. All you can do is entice them and provide a routine and circumstances likely to encourage them.)

Read more... )

Ruby – all she needed was her new orthotics to become super Ruby, able to stand unassisted (for at least a second), able to get into bear walking position (though not to move forward), able to climb like a young mountain goat, able to pull herself up independently, and all while being very proud of herself!

I think the right one may be slightly uncomfortable because she often pulls that one off and scoots around with just one shoe on. Otherwise, brilliant!

Also, the community nurse measures her as 76cm, a massive improvement over the 67cm the paediatrician recorded. I suspect one of the two has transposed the digits, because I am pretty sure she hasn’t grown 9cm in 7 weeks. Hoping it’s the lower measurement that is wrong. If she is 76cm tall she is only slightly below the bottom 3rd percentile. If it is 67cm she is way below, hence the whole wanting her to go on growth hormones.

My efforts to encourage Ruby to eat more have not really been successful but she has had a cold pretty continuously for the last two months so perhaps she is just not up for it. I have sneaked some extra fat into her diet by mixing full fat dried milk into her full fat milk (double milk! Like double cream!). Also, I have been giving her snacks of chips – probably the oddest thing a dietician has ever recommended. Now I think about it, doubly odd given that hypertension is associated with NF1.

The only area with no progress at all has been weaning Ruby. The dietician wants her weaned so she will eat more meat and fat in the day. But. First Ruby had a cold, then I had a cold, then it was Swancon, then I tried for two nights which lead Ruby to being awake for four hour periods over the night, then she had a cold, now I have a cold.

When I am better I suppose I will have to try again but frankly I see little prospect of success.

Read more... )

However, I did use the holidays to improve some other areas of my life. Check out the back yard.

Read more... )

Note how I hacked out the brush and ten years worth of dead leaves. And then put down brickie’s sand and concrete slabs and moved the sand pit up there. What you can’t see is that I also assembled a cheap cubby house. Way to go me with the hitherto undiscovered DIY talent. There must be at least twice as much useable (playable in) space in the back yard now.

In short, we have all loved the school holidays which gave us time to do the important things in life (eating, toileting, walking and playing).
emma_in_dream: (slap)
She is so in love with her shoes and inserts that she is currently wearing them in bed.

When they are not on, she picks them up and balances them on top of her feet to show me where they belong.

I'm not sure if she loves them because they are pretty or because it is easier for her to stand, but they are certainly a big hit.
emma_in_dream: (x files)
Ruby got her orthotics yesterday and I can already see the difference in the way she stands.

I hope these little shoe inserts will be enough and she won't need leg braces. I tried to see the upside of braces by thinking she would be like Miles Vorkosigan but this just made me freak out because Miles is crazy! Crazy! (Lovable but crazy!).
emma_in_dream: (dr who)
Now that Pearl has completed nearly a term at kindy I want to reflect a little.

Things that I like:

· Pearl goes to kindy happily. She likes playing there.
· She seems to enjoy making things despite her weak muscles. Her art is noticeably less advanced than that of her peers in the areas of drawing and painting, but she is a champion at threading and cutting with scissors.
· She is getting slightly better at getting on with other people and does not rush up to the other children and shout ROAR in their faces any more.
· They have really nifty toys and craft materials.
· The teacher told me she thinks Pearl is bright and has a good vocabulary.

Things that I dislike:

· Unfortunately the kindy teacher had to have an eye operation in the second week of school. There was a temp, then the teacher came back, then she got an infection and there was a second temp, but now the proper teacher has returned. Having one consistent presence is much better and may have contributed to the rocky start to the year. What I can do about this: no need for action, the teacher is back on board.
· I am constantly being taken aside to have it explained that Pearl is less mature than the others, lacks the ability to concentrate, does not like standing in queues, spins around so her skirt flies up and gives the other kids violent hugs. I expected that she would be less mature than the others because she is 11 months younger than some. Also, she has no experience with group life as she was not in day care. What I did not expect is virtually every time they say this I ask what we can do about it and inquire what strategies they suggest and the teacher responds that she does not know. This is not helpful. What I can do about this: her actual, proper teacher does not do this. It was just the temps and the aides, so no need for action.
· Pearl sometimes does not want to go because she says she does not like standing in line. I understand this but it is a skill that will be of lifelong value (especially when using female toilets). The teacher came up with a way to deal with this on her own and now Pearl is put at the head of the queues. I virtually cried when the teacher told me this because I am so stressed about everything else that is going on health-wise and I feel that I keep getting asked to solve these kindy problems too, and I am happy to do what I can of course but I am not actually there during the day.
· I had not thought of Pearl as emotionally immature or as lacking an ability to concentrate. Indeed I would have said she had ferocious concentration when she arranges her toys and puts her treasures away. Now I am thinking that this is a NF1-related learning disorder and that’s just one more terribly worrying thing to deal with. What I can do about this: after Pearl has had her OT review and seen the paediatrician I will go to them with some concrete ideas about what the teacher can do.
· Nearly every time I go there I can hear the teacher calling her name. What I can do about this: I am sure she is being difficult for them, but I am also taking the precautionary step of buying her a uniform (even though it is non-compulsory) so she will be better able to blend in with the herd of other children. Perhaps she is just more visible than the others.
· I kind of thought the parents would get more day to day news. I thought they might want volunteers. What I can do about this: will find out when the teacher-parent night is.
· And unrelated to the previous points but of more generality, I do not like the way Pearl became obsessed with fathers and nuclear families as soon as she started school. I am sure this is not coming from the teacher or the aides, but I think it may be because sometimes fathers pick up some of the kids and because the dolls and jigsaws they have are all of white, heterosexual families. What I can do about this: mention it to the teacher and offer to buy a jigsaw with more diversity.
emma_in_dream: (Default)
I got the MRI results today and the results were good, really the best I could hope for. There was no sign of a tumour on her optic nerve or her brain.

She has a small malformation of one bone in her skull which is apparently characteristic of NF1 and harmless.

The doctor was concerned that Ruby is short. He was quite worried about this, but I don’t think it is such a big issue. My family is full of short, bossy women and as far as I can see it has made no difference to the lives of anyone I know. He would like her to go to the growth clinic for injections of growth hormones at some point but I am very reluctant to do this. I will think it over but I would take a lot of convincing, I think.

He also pointed out that she would probably not be very good at sport, would be uncoordinated and have poor reflexes. I must have boggled because he added defensively that if a child had very sporty parents this could be a significant part of their social lives and self esteem.

Exactly what the future holds for Ruby I am not sure, as NF1 manifests in all kinds of ways along the whole course of a person’s life and it is impossible to know how it will turn out and what symptoms any individual will get. Right now, though, being free of tumours and malformations of the brain and spinal column is great and I am really relieved that the neurologist agreed that her ability to pick up language was much the most important thing, far more important than walking.

I really don’t know how much information is appropriate at this stage, mostly in a defensive move. On one hand, I don’t want to define Ruby in the eyes of casual acquaintances (‘Oh yes, the one with the genetic disease and the mother who bangs on about it’). On the other hand, I can already foresee that I am going to be very frustrated at Swancon because people, especially acquaintances, like to minimise bad things (‘They look perfectly healthy to me!’ ‘Clearly if the first scan for tumours was clear that is what will happen for the rest of her life and you have no need to worry!’ ‘No need to do so much intervening, my kids turned out fine without it!’ ‘Maybe you are over-reacting, after all the MRI was fine!’).

I know worrying about Swancon sounds ridiculous, but, seriously, people will say ‘So what have you been doing?’. And the answer involves a massive back story about my kids and their development and a genetic disorder they won’t have heard of which has a whole heap of ways it can manifest. Maybe the easiest thing to say is… hmmm what else have I been doing? Baking bread, rewatching *Highlander*, thinking about how to make an Emily the tank engine cake for Pearl as this is what she has requested for her birthday, decluttering, trying to figure out how to make an interactive children’s water sculpture on my wall, doing some art. Nothing very interesting; I always dread sounding like a SAHM Stepford mother, which of course is a dreadfully sexist thing to dread being. After all, there’s nothing wrong with doing traditionally female, home-centred activities. Anyway, I digress….


My feeling is that the MRI and neurological results were the most important things in the short term. The next level of importance for Ruby is getting her orthotics fitted so she can stand more easily. And for Pearl, the most important thing is lining up her MRI so we can check on her – after her next paediatrician’s appointment after the con. Once those really pressing things are sorted and I know that they are both not in imminent danger, we can start getting a more peaceful pattern back in our lives.
emma_in_dream: (fred day)
Week One - Physiotherapist (Ruby), Dentist (me), GP (Pearl).

Week Two - 3 days in hospital.

Week Three - Eye doctor (Pearl) - cancelled by the hospital, physiotherapist (Ruby), MRI (Ruby), OT review (Pearl) - cancelled by me because it clashed with the MRI.
emma_in_dream: (mlp)
Ruby had her MRI today, as an opening came up unexpectedly.

It was a pretty rough day for a little girl - no food, no water, no nap and then drugs that made her go to sleep. She looked really tiny on the great big stretcher with a little tiny gas mask over her face, poor wee thing.

Unfortunately they could not do the eye test at the same time so she has another general anaesthetic waiting for her down the line.

NF1

Mar. 18th, 2012 10:37 am
emma_in_dream: (Default)
I was quite upset about the likely diagnosis of neurofibromatosis 1, but now I've had time to think it over it's not so bad.

The odds of getting all the associated conditions are really low, and almost all of them are treatable or manageable. Fingers crossed for not getting the visual impairment, but even that is manageable.

I was really frustrated that we spent three days at the hospital without getting the MRI but at least that shows the neurologist doesn't think it is a real emergency.

I am finding the constant round of medical appointments a bit wearing. Last week, three days in hospital. The week previous to that, the paediatrician, the dentist and the physiotherapist. Next week the eye doctor, the physiotherapist and the OT. I think it would be a lot easier to live a quiet, child-centred life with rhythm if we didn't have so much on.

Profile

emma_in_dream: (Default)
emma_in_dream

December 2020

S M T W T F S
  12345
6789101112
1314 1516171819
20212223242526
2728293031  

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Jul. 4th, 2025 10:30 pm
Powered by Dreamwidth Studios