Monday, April 23, 2012

Better




A text to a friend:
"BTW next week. I'm feeling better"

"feeling better"
in a more excellent way?
higher in quality?
improved?
or fully recovered?

just a wee bit better I think; a little improved.
and then I saw this definition of "better" in a (brilliant!) book that I am reading:



"better, adj and adv.


Will it ever get better?
It better.
Will it ever get better?
It better.
Will it ever get better?
It better"



perfectly describing the endless cycle of questioning myself and being hopeful that things will improve; perfectly describing my state of mind; perfectly describing my "feeling better"...







Wednesday, April 18, 2012

Painting



"One never knows what one is going to do.
One starts a painting and then it becomes something quite different.

Pablo Picasso











One thing I am certain of is this,
one (child) starts painting in this house
 and bath time is inevitable.

:)






Tuesday, April 17, 2012

"Keeps our teeth healthy every day"






"Brushing, brushing, brush this way,
Keeps our teeth healthy every day.
Once in the morning,
then at noon,
And at night time when we see the moon.
Brushing brushing, brush this way,
Keeps our teeth healthy every day."

(Sung to twinkle twinkle little star)






Brushing teeth is the hardest part of being a parent.
Truth!
And no, I'm not kidding...


I battle every morning and night with the girls:
"Please open your mouth?"
They shake their heads at me, lips tightly pursed.
"Please?"
They look at me and smile, lips clamped shut.
Niamh gives in, "how much longer?" she mumbles as she hops and dances and spins...
"Will you stand still!" 
"But how much longer?"
Finally we are done...
I resort to tickling Eilidh and as she giggles she cannot help but open her mouth... I pounce; she shouts, "Don't hold me! No, that hurts! Want to sit up! No! not like that, want to lie down..."


OMG, they infuriate me!


Do you know what makes it even more difficult?  Niamh has dental caries (or holes as we so affectionately call them!) and I feel so guilty - I feel like such a terrible parent.  I have failed her - or at least her teeth!  And the guilt gets worse: my dad is a dentist and I have no fillings...  I am guilt ridden! 

We have brushed her teeth since her first tooth appeared at the age of 13 months.  Ok, we may have forgotten on the odd morning or two to brush her teeth and, yes, we have let her brush her teeth on some occasions but I have not been totally negligant.  I haven't...  She has been to see the dentist - aka grandpa - and sat in his chair, but never opened her mouth for him!  We have read Usborne's great First Expereince book "Going to the Dentist" and "Maisey, Charley and the Wobbly Tooth"  to try and reassure her that grandpa isn't going to hurt her, that she'll have fun and go up and down on grandpa's big fancy chair and even get a sticker, but she still gets upset when we go to his surgery.

She doesn't eat many sweets and never gets fizzy pop.  Her diet is good and healthy.  I do know that I should have listened to my dad though...  I thought that I was giving her the best by encouraging her to drink fuit juice and smoothies - damn you, Innocent!! - because, after all it's all part of a healthy diet, isn't it?  But these fruit juices are bathing their teeth in erosive acids, eating away at the enamel of the teeth and making caries more likely: fruit juices may even be more erosive than fizzy pop!  I should have listened sooner, dad...  So a word of warning - limit your child's fruit juice and perhaps even water it down, and let them have it at meal times when the effect of the acids are greatly reduced.

So, you see,  I have contributed to her "holes" and now she has three caries that I can see, taunting me, telling me that I'm doing a rubbish job of looking after her teeth, teasing me with the idea that I might be an awful parent...  I need to do something...  My dad has recently retired - cheers, dad! - just as we were breaking through to her, but today enough is enough and we are going to see a new dentist.  Fingers and toes crosssed that Niamh lets the dentist take a look, that I don't get shouted at and that I don't come out feeling like a total failure...







Shimmy On...






Only in Glasgow!





Monday, April 16, 2012

Tonsils

Recovery Eilidh



OK, Eilidh and her sleep apnoea; it's been nearly a year since I last posted about it and where the year has gone, I don't know!  I recently got an email from a lovely mummy of a little boy who has SMA and sleep apnoea and she wanted to know what happened to Eilidh and her huge tonsils...

Well, the story until the night before her admission to hospital last May is here, here and here, but here's a quick synopsis:


Eilidh had always been a big snorer - even before the SMA diagnosis - as she had huge benign (normal) tonsils which touched in the middle. When the news of her muscle weakness arrived, our consultant quickly referred us for an oxygen sat monitor overnight - she dipped down to 92 % about 9 times an hour and that was when she was well and hardly snoring at all!  We were referred to ENT and because she was only 18 months at the time they left her for 6 months thinking that the desaturations might improve - to be honest I really don't think that the ENT surgeon really understood about SMA and the effect on respiratory function.  Needless to say, her snoring never improved and,luckily, she escaped the winter with only one chest infection and no sore throats.


And now onto her stay in hospital...  Eilidh's admission to hospital was, as you can imagine, worrying for D and I as parents but I also had the added awareness and knowledge that goes hand in hand with being a doctor (who had worked at the hospital for 2 years).  We stood by each other - together we are strong  - and we carried on, all the time hoping that the decision we had taken to let Eilidh undergo the operation was the right one, that it would make a difference.

It took the surgeon 12 minutes to remove her "big, bad tonsils" and "huge, bad adenoids".  She was only away from us for about 30 minutes before we rejoined her in recovery where she was monitored for 2 hours.  By the time we got back to the ward it was already clear that she wasn't snoring and she was sleeping on her back and not snoring!  She began to wake up and my Eilidh was back, happy and smiling and eating her weight in Quavers and ice cream!  We were kept in overnight so that her oxygen saturations could be monitored; I'm glad that we had been as she vomited repeatedly, but by morning she was well enough to be discharged and we were heading home.



So Eilidh stopped snoring - well, not entirely! she does still snore when she has a cold, but who doesn't? - and started sleeping better; this meant that she was no longer sleepy during the day or crabbit or needing a nap.  We knew that we had made the right decision - the procedure had been a success.  It wasn't until November however that this was confirmed: Dr Neuron requested another oxygen saturation monitor for overnight and Dr Breath gave us the brilliant news that the study showed no evidence of any desaturations - times when her oxygen level dipped.   We had made the right decision and the relief was immense; Eilidh was a new and better, non-snoring Eilidh.







Hospital Mickey






An ENT reflection

"9th May 2011 - a diary day reflection


Eilidh is sleeping next to me:
A gentle purr.
Peaceful.
With a tummy full of Quavers and Jaffas!

She has had her tonsils and adenoids out today and it's all gone well - a little longer in recovery perhaps just to make sure that everything's ok, but she's ok.  Thank God, she's ok.

I didn't think that I was particularly worried about the operation but on reflection I don't think that I had really given myself the chance to think about it.  I became a little more anxious as this weekend progressed and I suddenly became aware that I didn't want to hand her over to anyone else to look after.  I however realised that, once again, I needed to have faith; I needed to place my faith in the doctors and nurses looking after her.  I needed to hold on to my faith and trust in God to be there by her side, carrying her when necessary.  I needed to remind myself that, from the moment that she as a possibility I had entrusted her to God and that, despite the diagnosis of SMA and the hardships of the last year, we are truly blessed to have her in our lives.

So this morning as D worried and needed reassurance, I had to emphasise that I needed to be her mummy; I needed to switch off my inner doctor and just be her mummy - I couldn't reassure him, too.  I also needed to have complete faith in the medical team for I needed to hand over her care to them.

As I carried Eilidh into the anaesthetic room, I did so with faith and I talked to her calmly as the venflon went In encouraging her to breath slowly as the mask was put over her face and as she breathed in the funny smelling gas.  I was calm; so was Eilidh.  She looked beautiful as she fell asleep - just as she does now while I write - and I kissed her with an "I love you..."

12 minutes is all it took: the ENT surgeon said, "big, bad tonsils" and an obstructed nasal passage (from her adenoids).  Minimal bleeding. Ultrasound; less risk of secondary haemorrhage and infection.  But it was all a blur, I just remember feeling grateful that the operation was over, that she was waking up again and that it hadn't been an unnecessary procedure.

Now, as she sleeps I am stunned by her peace and sense of contentment.  Her beauty is breath-taking.  She is a joy and fills my life and my heart full of endless joy.  I am so very blessed"





Friday, April 13, 2012

Curves





 


 

 
Children with SMA have weak muscles and in the case of the spine these weak muscles can not hold it straight so an abnormal lateral curve can occur: frequently - according to the paper I have just read, all - children with SMA 2 will develop this abnormality known as scoliosis.  A severe scoliosis can effect breathing and can make sitting more difficult with spinal surgery and correction of the deformity being a treatment option.

Eilidh has a scoliosis and was referred to a spinal specialist by Dr Neuron six months ago.  We were seen recently by Mr Spine, an orthopaedic surgeon for Eilidh's initial appointment and assessment - a formality really and very much a "meet and greet" but necessary all the same.  Eilidh had x-rays taken on arrival which took a wee bit of time to get -

 
"please try and sit still, eilidh" i said as she tried her hardest to sit on the chair, smiling at mummy who was wearing a really funny (lead) pinny with cartoon animals all over it.
"don't wobble!" cautioned the radiographer - try telling that to a 3 year old with poor sitting balance - but Eilidh did try hard and she smiled at the camera, too!

 
- but we did get them!

 
Mr Spine and I talked a little about Eilidh, her SMA and her mobility.  He examined her and then looked at the x-rays, measuring Cobb's angle, which measures the degree of side-to-side curve in the spine, and explained that a "normal" spine will have less than 10 degrees of curve and that anything over 10 degrees is regarded as a scoliosis; E has a 17 degree curvature and so - no surprise! - has a scoliosis.

 
He continued on to say that surgery is not required at present - as way of reassurance - and may not be necessary as the natural progression of the scoliosis, and subsequent problems as a result, is unknown and can therefore not be predicted.   A spinal jacket or splint may at some point be necessary, but again not just now as she is reasonably mobile and has good trunkal control and sitting balance.  Mr Spine explained that rigid splinting can lead on to further problems as they somewhat limit the use of the abdominal (tummy) and respiratory (breathing) muscles.

 
With no intervention required at present and no further questions from me, we were dismissed with a "see you in 2 years but please contact me if you notice any changes before then" and a smile.  Another appointment over... phew!

 
For me the thought of a scoliosis isn't a biggie really - and perhaps that's because of my medical background - and I can easily dismiss it, putting the idea into a box and pushing it to the back of my brain.  But it's not just me that I need to consider and D needs to hear about the appointment and be told a little more scoliosis and its treatment.  So we talk and he begins to worry - for in his mind scoliosis was something of the far, far, far off distant future - and he asks questions and you know what?  I can't actually answer them because I have already consigned the problem to the recesses of my mind and to a future many years away: I realise, however,  that it's ok to say "i don't know" because he knows that I'm trying so very hard to be Eilidh's mummy and not her doctor.  Soon he - quite quickly - too has placed her scoliosis in a box and firmly shut the lid.


Today, only for the purpose of writing this post, I reopened the scoliosis box and read a few articles - and then had to stop my research as I got too caught up in the "medicalness" of it all; this is about my daughter, not a patient or a case study, my little girl...   and this is what I found:
  • "expert opinion" suggests that all children with SMA 2 will require surgical intervention - with this improving quality of life and activity of daily living (1)

  • a non-rigid spinal jacket may be used prior to surgery; rigid jackets can reduce respiratory function (1) (making chest infections more common)

  • there is no data to suggest that spinal jackets will alter the progression of scoliosis in children with SMA but they can provide comfort and  functional support, aiding sitting balance, making the use of the upper limbs easier and could also help breathing (2)

  • post-operative complications are common, particularly in relation to respiratory function (1)
 
So now I'm a bit better informed - great! - and the scoliosis box has a few tit-bits of information in it; and here I am just putting the lid back on the box and confining it to the "not so far, far, far off distant future":


"DO NOT OPEN UNTIL 2014!"
 
 
 until then...





  
(1) Mullender et al "A Dutch Ggideline in the treatment of scoliosis in neuromuscular disorders" - the full article can be found here
(2) Kotwicki er al "Bracing for neuromuscular scoliosis: Orthosis construction to improve the patient's function" - an abstract can be found here
 
 
 

Thursday, April 12, 2012

Tig!




a moment captured on film:
just before the "tig!"






by tony marsh






Snappie - one year on



Snappie the Snapdragon came into our lives a little over a year ago; she has not solved all of our problems - far from it! - but, with time, she has brought fun to our family (just as Dan from Dragonmobility promised). Snappie is most definitely a girl: temperamental, bolshie and really quite gallus - perhaps she has inherited this characteristics from her proud owner? Snappie is fast and can turn on a tuppence; she even does wheelspins!  She's travelled through parks and fields, seen the sights at museums and now ventures to nursery.  She's been clarty, mankie and pretty maukit too.  I think that Snappie thrives on thrills and excitement  - a bit like Eilidh! 




extreme flowery makeover
april '12














With Snappie we have come far in the last year from a point of hatred  (yes, I would put it that strongly!) to one of acceptance - well kind of!  We have said goodbye to the buggy and moved on to independence through the wee Micro first then to Snappie.  From her first moves, to becoming more confident, to now playing "tig!" with Niamh, Eilidh is blossoming. 


Eilidh loves Snappie - that much is evident as her eyes light up at the mention of heading out with her - and loves the independence that she has gained from having a friend like Snappie.  Eilidh's love is contagious, she is teaching us about life with Snappie; she is breaking down walls and leading the way in her own definite and distinguished way.


So once again, thank you to everyone who made this possible through The Whizzy Wheel Fund and thank you to all at Dragonmobility who made and continue to make this possible. 


We, as a family, can now look forward to many, many more Snappie adventures. 






And here's the latest instalment in the Snappie tale:








Wednesday, April 11, 2012

I am strong




I have depression but this does not mean that I am without strength; I am a strong woman.


I have depression but it does not define who I am; I will not let it.  Each day I try to choose my attitude - and I try so very hard.  Some days it's more difficult to choose the "glass is half-fill approach" but if I try then it means that I am making a positive stand against an illness that I cannot will away, an illness that does not differentiate or stigmatise. I have a choice and I choose to live, fully aware and joyously.


I am a strong woman but every now and then I wish that someone would take my hand and tell me that everything will be alright, that I am not alone and that they are there for me.


I am a strong woman, clever and courageous but I am no different to others -  I need saved at times too: asking for help does not make me any less strong, it just means that I need the help of others - I need to try hard to remember this.


I am a strong woman and am stronger than I realise - and so, if you are reading this, are you.


I am strong and when the day is difficult and life seems tough I need to keep this in mind - we all do.



Tuesday, April 10, 2012

1 in 4




Depression is real and you will know someone living with depression. 
It is not an anonymous illness:
it does not differentiate or stigmatise;
it lives amongst us all.


 









Wednesday, April 04, 2012

At Peace - The Gallery

This week's Gallery is about being at peace -
with oneself?
with the world?





kaikoura





for me:
peace = water, water everywhere
peace = weightlessness while swimming
peace = the moment after the tears have fallen
peace = aotearoa
peace = the quiet slumber of my family, my heart full of love for them








One Life










"You say the more you think you know what's right
The less you do what you feel inside
So I won't pretend that I always know
I just follow my heart wherever it goes
And I may not always get it right
But at least I'm living coz I've only got this...

One life, one life, one life, I've got this one life.

If I knew yesterday what I know today, where would I be tomorrow
I won't let my soul slide away, I'd do whatever it takes
Coz this time's only borrowed

I got one life, one life, one life and I'm gonna live it
I got one life, one life, one life and I'm gonna live it right

When I'm an old man, hope I'll be rocking in my chair
Smiling to myself
I'll tell my baby girl
"You only get one life, so make sure you live it right""





So, what do you think?
"You only get one life, so make sure you live it right"



Tuesday, April 03, 2012

"Happiness is the way"





"happiness is a journey, not a destination...

for a long time it seemed to me that life was about to begin - real life.  but there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid.  at last it dawned on me that these obstacles were my life.  this perspective has helped me to see there is no way to happiness. happiness is the way.  so treasure every moment you have and remember that time waits for no one."



souza

Strength



"30th June 2010 - a diary day reflection

I try every day to live life to its fullest but it is so, so difficult.
I try every day to see the joy in my family, in my life, in me.
I try each day to search for the littlest, smallest glimpse of joy.
There are days when I ache for the search to be fruitful, when I ache to find the joy somewhere withing my breaking heart, within my discombobulated life.
I try each day to be grateful - and I am so very grateful for so many things but I am finding it increasingly hard to express my gratitude.
I try every day to smile; to be present; to be happy.
Life is difficult though.
I don't think that I ever appreciated how difficult life could be.
I know now that I have a difficult journey ahead of me and that I need to learn how to live each day and treasure every moment that I have, that my family have."



I stumbled across this entry last night as I flicked randomly through my diary.  It told me of the journey I am on, but also of how far I have come.  Somedays it doesn't feel as if life has moved on, but it has and, despite everything, I am stronger.  At times like this, that's exactly what I need to try and remember:  I am strong and stronger is possible.



Monday, April 02, 2012

Mojos

"hoping your mojos come home soon"




First, my baking mojo - brownies which wouldn't set...
Second, my photography mojo - I fell out of love with my camera...
And now? 
My mojo, my essence in full, seems to have gone on holiday...

I do hope my mojos come back soon. 
Thank you for my beautiful flowers, mrs bring me sunshine;
thank you for thinking about me.
xxx