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Sophie...
 
  ... was born in early 1992.

She was a remarkably cute baby (and still is a good looking wee girl), well, perhaps I am slightly biased in some respects!  Things were somewhat strenuous for the first couple of months, she had what everybody said was colic - the evenings were filled with some very hard crying, most of which came from Sophie.  When she was two months old, we trialed her on soy based milk.  The "colic" disappeared.

When she was three months old, my wife Glenda noticed a strange, but very small, movement in her left arm.  It was only a twitch.  After a couple of these, we took her to the Doctor, who immediately sent us in to Christchurch Hospital.

 

 

It took a long time to persuade the medical staff that there was anything going on.  Eventually they diagnosed "myaclonic" seizures, a form of epilepsy, and prescribed an anticonvulsant.  This made her very "phlegmy" and difficult to feed. They kept muttering things like "sinister in terms of her development", and "not a good outlook", but would not (could not?) give any definitive outlook.  

Sophie's seizures continued to get worse after we were discharged, so back we went.  "At least she doesn't have apneas" said a nurse.  Naively we asked "What's an apnea?". We soon found out.  Sometimes during a bad seizure, the patient will loose the ability to breath...  Man, those nurses run when the buzzer goes three times...  Sophie required "bagging" (respirating) to help her restart breathing.  Because of the acid levels in the blood, the Doctors were reasonably sure that no long term damage had been done.  She was now having about 12 - 15 seizures per day, and required oxygen to help recover from most of them.  She was sent to the Intensive Care Unit for the night, and put on Phenotoin.  She was already on an Anticonvulsant called Phenobarbitone.  Eventually she improved to the point where she didn't require oxygen to recover, although she was still having a high number of seizures a day.  The Phenotoin and Phenobarbitone were withdrawn (giving her some terrible withdrawal symptoms, although this was denied by some Doctors) and replaced with Epilim.

 

The decision was made to put Sophie on a course of steroids to try and stop the seizures.  An EEG had shown a sinister pattern called "Hypsarrhythmia" (I must check the spelling) which pretty well confirmed the outcome as severely handicapped.  The steroids worked, the seizures were halted, but she puffed up like a massive balloon.  The amazing thing was that she was happy!  She started smiling again, and, we imagined , started to continue her development.  The steroids eventually had to stop (after 6 weeks), and the seizures returned, albeit less severe.  The smiles faded... but eventually returned.  By this time it was August 1992, and Sophie was 7 months old.

Sophie is now 6 years old(1998).  Things haven't changed all that much since then.  The medicines have changed, as have the seizures.  Her development is progressing at an extremely slow rate, she still can't hold her head up by herself - but she tries very hard.  We have attended the Christchurch Early Intervention Trust (now the Champion Centre) from when she left hospital until she went to school, and have used the methods they preach fairly intensively at home.  She is officially "Severely Handicapped", which is 4 on a scale of 1 to 5 (5 being Profoundly handicapped).

  These are the plain facts of my Sophie, but a human being is more than a set of facts.  Sophie is a warm, loving, child, who tries very hard to do the things she obviously wants to.  Her physical abilities amount to (sometimes) being able to roll from her back to her side, and hitting out at things.  She can operate some switch operated toys (with a large "jelly bean" push switch), and loves her cuddles with a select few.  She tries to communicate verbally, but there have been no identifiable words (except, perhaps, hopefully, "Mum").  Her medical condition is usually described as Epileptic Infantile spasms (or West's Syndrome).

 

 

Sophie requires a large amount of work and support for day to day living.  As she gets older she will have to spend more and more time in a wheel chair.  Baths are getting very difficult (and hence risky) because of the lifting involved.  On the plus side, she started school last year, and really loves it.  It is a very special school.

The Government does provide support.  We are allowed 28 days per year of specialist carer support, which mostly gets used for odd baby sitting requirements, and those tasks where you simply can't take a wheelchair along. There is also a small, but appreciated, handicapped allowance. Nurse Maude provide large nappies (5 packets a month at $70 per packet!) which is a massive help.  The Ansett Stars Trust kindly donated a fair sum of money to help us buy a van with a wheelchair hoist when Sophie got too big for a car seat.

  Where we go from here is anybody's guess. Things are getting more awkward, but more support will hopefully be provided.  We try not to think more than 12 months ahead, but Nicole has helped to put some sanity back into our lives.  Isn't that a reversal of children's usual role?!  Sophie enjoys her home life and is an important part of our family.  We try to include her in as many aspects of our family life that are appropriate and practical.  I have learnt from Sophie that, sometimes, the most important thing in life is not self-determination, but happiness. 

 

 

 

June 1998 Update

Sophie has been on dairy foods for 6 months now, it looks as though she has beaten her dairy intolerance that was such a complication to an already awkward situation.  Additionally, she seems to be improving with her muscle tone.  She can, when she wants to, support her own head for  a considerable period of time.  Although we "do physio" every night, a lot of the credit must go to her school, who do the exercises every day.  I can't speak highly enough of her school (but sorry, I'm not going to mention it - got to have some security!), they really are the best things since, or possibly including, Morris Minors.  Or TR7's.   Sophie thoroughly enjoys school, and comes home "buzzed", happy and tired.  Tired is good, as long as it's not over-tired.  It helps her sleep.  Lets face it, nights are very long if you are six, handicapped, and staring at the ceiling!

 

 

 

The only negative things at the moment are a couple of hospital visits for respiratory infections (for god's sake, when will* they fix the parking at that place.  Don't they know how bad stress is for people?), and we are still waiting for Pharmac (the Govt drug buying agency) to approve some of the new anticonvulsants

*They fixed the parking in mid 1999, when the construction of a new parking building was completed.  Well done, at last!

 

March 1999
I lay on the ground with a handicapped child, as we gazed up at the stars.  As we held hands, I wondered what she thought of them.  To me, they're a massive flaming sphere of hydrogen, belching out vast quantities of radiant energy in an incomprehensibly huge nuclear reaction.  To Sophie, I suspect, they're just some very pretty shapes.  Does she ever wonder what causes them, I muse?  Sophie can only communicate Happy, or sad, or pain, or discomfort, (and occasionally indicate a desire by look or touch).  In this case, Sophie is nearer the truth than I was - these stars were made of painted polystyrene, and stuck to the ceiling with pins. 

She's still a sweetheart.

June 1999
Sophie requires an operation on her back.  As she grows older it is getting more curved, apparently it has worsened by 7 degrees in the last six months.  Later this year she will go to Dunedin for ten days for the op.  Oh joy.  :-( 

The other bad news is that her specialist does not believe that we would gain anything by changing to a newer anticonvulsant, he believes that her seizures are controlled enough. 
To end on a high note, Sophie seems a little bit more aware of her surroundings every year that passes.  Although she has made no major gains, she is definitely trying harder with her physio, and is more appreciative of attention.   I suspect that she is smarter than, say, a Minister of Energy.  Definitely, when I come to think of it.  

 

November 1999
Sophie's operation (see June update) has been delayed indefinitely, for good reasons.  Her OT was concerned that she has made so much progress this year that an operation would set her back too far.  Additionally, she believes that Sophie's muscles on one side have developed considerably (we still do a fair amount of physio, and the school do a lot) and is exaggerating the effects of the scoliosis  The Surgeon has agreed that, while Sophie gets regular checks to keep an eye on this condition, that the op can be delayed to give the physio a chance.  Yay!  

We're very pleased, apart from getting our Christmas back, Sophie has worked her way out of the operation in the short term and may do so permanently.    She really is doing well, in physio my neck gets tired before hers does sometimes, and she can sit without neck and shoulder support for short periods of time.  This is major, positive, progress for Sophie.  Isn't that great?

 

April 2000
No real change on the Sophie front, except that she seems to get a little more aware and animated every month.  She's trying hard and knows when she's doing well.  Which is most of the time, these days.  She continues to strengthen her neck (and hopefully her back) muscles.  And she's a real joy to be with.  Her seizures vary, sometimes it seems as though things are getting worse, then they seem to get better.  We're just hanging on for the ride!

One thought that I have had, reading the whole page, is that I haven't really given any credit to my wife, Glenda.  She is Sophie's "prime care giver" (I can't think of a better way to describe "Mum" at the moment)  and works incredibly hard to try and give the whole family a "normal" life.  I know a lot of hard working people, but none as hard working as Glenda.

We are also lucky enough to know a wonderful family who look after Sophie for her "alternate care".  We get 28 days per year, and know that she's in good hands.  It helps a lot, thanks Karen, Pete, and family!

January 2001
The more things change, the more they stay the same. The April 2000 update still applies, except that we are more convinced than ever that she will need an operation to straighten her spine. This is monitored every 6 months, and a decision will have to be made in the next year or two. Sooner, if it keeps curving at 14 degrees per year! She is also having a op soon to remove some teeth, but otherwise is a picture of health at the moment.

 

December 2001
What a year! Poor Sophie.

In July, she got Pneumonia, quite a bad dose this year, and took a while to recover. We were confused by the comments in the hospital about "no sign of Pneumonia on the X-rays", yet others were saying that this is what she had. One nurse finally put her poor parents in the picture by telling them that Sophie showed no signs of Pneumonia on her X-rays, but her Scoliosis hid part of her lungs. Symptomatically, that's what she had, so they assumed that it was in the hidden part. Anyway, she recovered from that after a week or two.

The Scoliosis Op
In late August Glenda and I separated, as mentioned on my page. A very short while after we separated we got a phone call to ask if we could be ready for an operation on her scoliosis in Dunedin in 12 days! Ouch! So off we all went to Dunedin, Nicole staying back with her Nana, Grandma, and Aunty. The operation went well but her recovery didn't. She spent 5 nights in ICU recovering, had a few collapsed lungs (well, she only had two when we went down there!) and had to be "bagged" (resuscitated) once. A very stressful time.

The strange thing was when Glenda was there things would go bad, when I was there it was usually smooth sailing. Just a coincidence of course, but it meant that Glenda had a far more stressful time than I did. All the same, it wasn't exactly fun, least of all for Sophie. She's quite stoic, and coped well however (must have been very painful). The staff at Dunedin were incredible, just so caring and couldn't do enough for us. Spending so long in ICU (that's the Intensive Care Unit just in case you don't know) was a real eye-opener. I could not speak highly enough of the staff there.

The result of the operation, now a couple of months ago, is that Sophie is sitting straighter, breathing better, sleeping better, feeding better, and has had an improvement in her quality of life. Was it worth it? A resounding yes, although none of us would like to go through it again. It's amazing what can be done with some number 8 fence wire and a couple of wire rubbish bag ties.

I've put some X-rays of the result on as links (didn't put them on the main page to protect the squeamish!): Click here to see them.

 

July 2003
We've just had a 2 year check up for Sophie's Scoliosis operation. The good Doctor says that everything's good, all the twisting and turning is within the norm, and that everything has healed well. She has certainly benefited from the operation and maintains good health. I can't believe that it's been (almost) 2 years, I haven't even written to the guys at Dunedin and thanked them yet. They see the patients for a few weeks, it must be nice for them to get an update. Must do it before there's nobody left there who remembers!
That aside, things continue to be reasonably good for Sophie, no major development but we always feel that she's on the verge of talking, but we have felt that for some time. I guess all we can do is continue to encourage her, and her school is excellent in this regard too. Must find some better photos to post (proud Dad, me?!).

UPDATE: June 2005

Life goes on. Sophie's general health, alertness, and well being has improved immensely since her scoliosis operation. She's now 13, and quite a young lady. My time with her feels like a priviledge, and any reaction from her is a huge reward. She seems genuinely inquisitive about her surroundings, appreciative of time spent with her, and notices any environmental changes (for example when Glenda had to remove a damage tree from her property). Sophie is rated as profoundly handicapped, but I am incredibly pleased and proud to have her in my life.

Update: April 2008

Sophie enjoys her high school very much. With the hard work of a wonderful school, she has achieved a couple of good development points, including better head control, and tolerating her standing frame for a considerable period of time.

Update: May 2011

What a year! 2010 saw repeated Hospital stays for increased seizure activity. The last stay was for two and a half months which ended with the 22nd February 2011 Canterbury (Christchurch) Earthquake when we self-discharged.This admission was for gelastic seizures, laughing (or crying) with no joy whatsoever. During this time she had been subjected to various medication changes and huge doses of the emergency medicine to try and stop the seizures. Her sleep patterns had been badly affected, she was awake for 5 days/4nights, then would sleep for 3.

Prior to the Earthquake the doctors had decided to remove some meds and stop the emergency meds. It was a bit of a hell-ride, but a good decision. Sophie's poor wee body had endured too many changes and too many doses of emergency medication to cope. In the months since the earthquake, her sleep patterns have been re-established, and her seizures are almost back to her lowest levels. She's now off Epilim (Sodium Valporate) which she was on for maybe 17 years. Possibly as a result of this, she is HAPPY! She seems a lot more joyful, completely different to the sinister laughing gelastic seizures.

One result of her stay is a change in feeding methods. Something caused her to stop eating, so she was fed for 6 weeks of her stay through a nasal gastric tube (NGT). After this she was given a peg, basically a line into her stomach from a connector which sits on her skin. At meal time we plug a tube into this, and pour her liquid food down it (bolus fed). She strongly refuses any food into her mouth, even cleaning her teeth is a battle. This is the only negative, luckily.

Apart from that, things seem to be going a lot better - here's hoping for a better Christmas in 2011!

Update: June 2012

Sophie does seem to be more alert than prior to her med changes in 2011. She's still capable of having some big seizures and having quite a flat period after that, but generally keeps good health and is definitely happier than previous years.

 

 

 
  (c) Copyright 2012 Brian Greenwood