Sunday, 24 September 2017

Second surgery - new rods

Two weeks ago Evelyne had another major surgery to remove her old Magec rods and insert new longer rods. Since her first surgery, Evie has been lengthened every 3 months, and reached the end length of her rods sooner than expected. A result of a Beals Syndome catch 22. Whilst the flexibility in the connective tissue is what made Evelyne's spine super bendy in the first place, the flexibility also meant her surgeon could straighten her relatively quickly, thus running out of length.

Leading up to the surgery Evie (and myself) were very anxious. Unfortunately having been through it before meant we were not looking forward to the surgery or aftermath. Anticipating the pain she would be in was the main worry. We distracted ourselves by planning a brilliant 9th birthday party the weekend before. As well as a bit of activity planning, relaxation oils, music downloads and lots of prayer.

The operation was longer than expected, so Jon and I were pleased when the surgeon emerged to tell us it was all over and she was in recovery. He informed us that much to his surprise, the existing screws had come loose in her spine. In his wording, two were extremely loose and one was "swinging in the breeze"! He was surprised that she had not been experiencing associated pain. We had hoped the surgeon would be able to just replace the actual rods, however, he had to remove all 4 screws, with 3 larger diameter screws, whilst having to drill a new hole for the 4th. He was happy that the anchors were now very secure and as a result she won't have the same restrictions as her first surgery. He was also confident that her recovery would be quicker than last time. All in all, very positive news.







The following days in hospital were still painful and long. Long days and nights with frequent repositioning required. Evie also had some issues with pressure injuries this time, but as an OT, I'm glad to be in the right industry to know how to deal with these! We were prepared with movies, music and audio books, and the DVD stand was again a godsend. Overall, everyone was pleased with her progress and she was able to get up and walk earlier than last time. The surgeon was happy with her x-rays, so we left hospital on her birthday with a bit of determination to get out of there! 

Heading home
For the last week Evie and I have stayed in Sydney, at our 'home away from home'. My parents have opened up their home, and in fact partially designed their house with Evelyne's medical appointments and recoveries in mind.  I am so grateful to have this provision, and my mum to look after us! We have enjoyed many hours of colouring, visits from cousins, craft activities, movies, and our now tradition of her first outing to Cold Rock Icecream. It has been a smoother process this time, knowing what the main issues would be. So were well set up with a lowered bed, lots of pillows, shower chair and toilet rails brought from home. 

Today we have finally made the trip home to Bathurst. Dosed up on pain meds and lots of pillows, it is always sad to leave my parents, but will be so good to be home!



Sunday, 27 August 2017

Dr Min Mehta

Dr Min Mehta passed away yesterday in the UK. She was a pioneer in the understanding of infantile scoliosis and her research into scoliosis and treatment has changed the outcomes for many children across the world.

The below is an excerpt from the Infantile Scoliosis Project website on her life and achievements.

Min H. Mehta, M.D., F.R.C.S

“From the age of six, I always knew I wanted to be a doctor. That is true; it has never changed” says Dr. Min Mehta about her life’s work. “Miss” Mehta, as she is respectfully called by her British colleagues, is the world’s foremost expert on infantile scoliosis.

Miss Mehta tells the story of discovering her own adolescent scoliotic curve. “At about age 11 ½,” she recounts, “my parents and other adults began to tell me to ‘sit up straight.’ At last a family friend–a nurse–said, ‘the child can’t sit up straight – she has a scoliosis.’” And, Dr. Mehta observes, the process of detecting scoliosis hasn’t changed much over the years.

Dr. Mehta attended medical school in her native Calcutta, India. During the course of her training, she discovered that she was interested in surgery, and had a natural aptitude for it. After completing a three-year surgical training program in Calcutta, she moved to Britain to continue her studies and gain further qualifications. There, she took her Fellow Royal College of Surgeons (FRCS) examination, which is necessary to become a surgical specialist, intending at that time to practice neurosurgery.

Miss Mehta was required to study orthopaedics as well, to pass her examinations. She had the good fortune to work with Mr. Wiles and Mr. Batchelor, two of the foremost orthopaedic surgeons of the time at London teaching hospitals. As a result, she became so intrigued by orthopaedics that she changed her specialty focus.


Quickly, Dr. Mehta began to appreciate the challenge she had taken on. “It will be tough because you’re a woman,” one of her teachers cautioned. “But you must go for it, because you are good.” It was the 1950s. Miss Mehta, because of her gender, faced enormous difficulties securing interviews for the positions she needed to advance her career. There were few female surgeons practicing in Britain at the time, and the establishment was eager to maintain status quo. She made dozens of applications and received no calls to interview. Eventually, Miss Mehta received an application form that did not ask the formidable “gender” question. She returned it and, due to her impressive credentials, was invited immediately to interview. Although they were surprised to see a woman, it happened that none of the other three applicants for the post showed up for their appointments. She landed the position.

In 1968, Miss Mehta was the second woman in history to be awarded the prestigious Robert Jones Prize and Gold Medal in Orthopaedics for her work on “A Study of Infantile Scoliosis.” By then, she had already discovered the Rib Vertebral Angle Degree (RVAD), which is the standard and routinely accepted measurement approach employed today to determine whether a scoliotic curve is progressive. She had also come to understand the benefits of early treatment of progressive infantile scoliosis. However, the journals would not publish this work because they felt there was not enough evidence.


A year later in 1969, still struggling to climb the London surgical ladder due to her gender, Dr. Mehta returned to India. She worked in major teaching hospitals in New Delhi and Calcutta for five years. Her paper on the RVAD was published in the Journal of Bone and Joint Surgery in 1972, while she was practicing in India. 
In 1974, Miss Mehta moved back to England, stepping into a hard-earned and well-deserved position:

Senior Lecturer in Clinical Research at the Institute of Orthopaedics, University of London. She also served as an Honorary Consultant in Scoliosis at the Royal National Orthopaedic Hospital during this time, until 1992 (this is the British equivalent to the American “Chief of Surgery” position).

Since then, Dr. Mehta has continued her research on non-surgical methods of treatment for infantile, congenital and adolescent idiopathic scoliosis at the Royal National Orthopaedic Hospital. 
Although Dr. Mehta has “officially” reached the British obligatory age of retirement, she continues to passionately pursue her life’s work. She continues to see private patients. The paper, “Growth as a corrective force in the early treatment of progressive infantile scoliosis,” published in September 2005 in the British Editorial Society of Bone and Joint Surgery, chronicles years of infantile scoliosis case studies.


Now, Dr. Mehta knows, her challenge is to spread the message about her findings and methods; to educate as many doctors and to help as many children as possible. “It is easy to learn how to apply a plaster jacket,” she says about the casting technique she has perfected. “The trick is to learn to look critically at each child and understand how it can be assisted. The earlier you treat children, the greater the chance of making them straight. But all children are different: their build, tissues, size, and shape vary. Some can be straightened completely and, for some, it may be too late. They are like little drooping flowers. Braces don’t work, and the flower will just flop back to the way it was. It needs to get is own sap, so it can hold itself straight.”


“I intend to keep on and on, to see that these messages are delivered,” Miss Mehta insists. And the Infantile Scoliosis Outreach Program is determined to help her achieve that goal.

Copyright 2017 Ability Connection Colorado. All rights Reserved

by Min H. Mehta, M.D., F.R.C.S. Published in The Journal of Bone and Joint Surgery (Br) Sept 2005

The story of Mehta casting being brought to US
The Greatest Gift - Dec 19 2000

Tuesday, 11 July 2017

Spinal Lengthenings ..... and an update

One of the major benefits of Magec rods is the fact that they can be lengthened externally. Each rod has a small motor that is activated magnetically via remote control and will expand the rod to a predetermined length. This means that the rods can lengthened to suit the amount she's growing, as well as the surgeon being able to lengthen one side more than the other to gradually correct the spine.


Evelyne has been having lengthenings every 3 months since the rods were placed in January 2016.
Whilst it is so much better than surgery, it is still painful. The first lengthening was especially painful. Possibly due to the length of time since surgery, possibly due to recent bone work and bone grafts, possibly her spine may have been starting to fuse in places. Yet again we weren't prepared for it to be painful. I had been told by other parents that lengthenings were pain free, but unfortunately this was not our experience. Each time the pain has lessened, and now we give her pain medication before we go.

Today was Evelyne's 6th lengthening. To our surprise, it turns out today was the last lengthening for this set of rods. As she was so small when her surgeon first inserted the rods, he was only able to fit the smaller length in. We had thought we had a bit more time before the next surgery, but it is now to be scheduled for September. The good news is, the doctor anticipates that he will be able to keep the current screws in place and just replace the rods to the longer version. This will result in a slightly shorter surgery, and hopefully shorter recovery.

A few tears from Evie today as she thought of another surgery. Last time we saw the surgeon and he mentioned another surgery soon, I said "I only just got over the last one!" To which Evie replied "I still haven't gotten over it!

I was recently reminded of a previous blog post of mine Dealing with disappointment. Whilst some appointments and parts of this journey are disappointing, it is good to remind myself how far she's come since 2011, as well as remind myself that God is indeed in control, and find comfort in that.


A painting Evie made for her doctor today. He affectionately calls her "E.B"

Sunday, 15 January 2017

A year on with MAGEC rods - A 'work in progress'

It's been a year since Evelyne's surgery and over a year since I last posted. So much has happened last year. Thank you to those who have sent messages asking about her progress. Some of this was written 12 months ago and has been sitting in my drafts.

Magec Rods (MAGnetic Expansion Control)

On January 7th 2016 Evelyne had surgery to implant magec growing rods. We had been awaiting this day for years and the time finally arrived.  Surgery was discussed as the next option in May 2011, but I sought out a new specialist with new options such as Mehta casting who encouraged us to wait as long as possible before operating. Waiting the extra 5 years not only gave her body valuable time to grow, but it allowed us to have access to the amazing technology of Magec Rods. They have a small motor in each rod which is activated via an external remote control. This enables the surgeon to lengthen the rods as Evelyne grows without re-operating each time. Dramatically reducing complications associated with frequent surgeries as required with traditional growing rods.

Surgery

Leading up to the surgery we were all nervous wrecks. I had little sleep before and so many doomsday scenarios ran through my head. But Evelyne was so brave going in, and then we had to wait.
4.5 hours later her surgeon came out and told us he was finished. He was happy with the final results but reported that it had been "tricky". The kyphosis hump had become quite rigid (a negative side effect of waiting longer) and he had to chip some parts of the bone to get it straighter.  Also, once in place, when beginning to stretch the rods, one of the screws started to come out of the vertebrae.  A bone graft and a few extra secures later and he was confident in the end result. He informed us that he saw her as a "work in progress", with this surgery being a stepping stone in the process of straightening her spine over the years to come.


Recovery
I wasn't prepared for the pain she would be in post-surgery. It was so hard to see her lying there and I was completely powerless to help. I probably hadn't prepared her for it either. It will be hard to forget the look in her eyes when she looked at me and said "Mummy, you said 'a bit' of pain". It was a long week. 
We made the most of movies on the ipad to pass the time. Another mum I have 'met' via facebook, has written some really helpful things down on preparation for hospital in her blog post.
A major milestone was walking again on day 4. With the main motivation being using a toilet rather than a bed pan. Then on day 8 we left the hospital to spend another week at my parents place before the longer trip home to Bathurst 2 weeks after the operation. 

Other things we had to put in place post surgery 
- A bed lower to the ground. 
- Sleeping in our room for the first few weeks as she needed help to move in the night
- Help on the toilet
- Pillows. Lots of pillows. In the car, on chairs, in bed.




Longer term recovery
Again, I wasn't prepared for how long it would take Evelyne to recover. I had thought about the short term, but not the long term implications. 
She returned to school for the start of the new school year, 3 weeks after surgery. However she was still on strong pain medication, and would fatigue very quickly. Due to the bone graft, she also had added restrictions in the classroom and playground. We put in an application for additional funding at school and were fortunate to be provided with a full time aide Deb (pictured right). Amazing grandparents also spent 2-3 days per week with us for the entire Term 1, so I could continue to work. 
By term 2 she was off pain medication, we no longer needed our parents help through the week, but she was still reliant on her aide and her wheelchair for school.

Wrapping up the year
Now this all seems like a distant memory. Although she still has restrictions, occasional pains, discomfort and fatigue. By the end of 2016 Evelyne was able to participate in some of her school athletics carnival, was a star on stage singing and dancing at her school talent quest, and won an end of year academic achievement award. She's pretty special.

















Tuesday, 15 December 2015

Last brace!

Sometimes it can hard to put a positive spin on things. But often that's the best option.
Evelyne will have her first spinal surgery on the 7th January. It is a major surgery in which they will implant growing rods, attaching them to her spine. I'll write a longer post on this process soon.  
Although we are a bit apprehensive, we know that the time is right. Evie's last x-ray showed that her curves have reached 68 degrees and 49 degrees IN the brace. As a result of this progression she has been experiencing more discomfort and pain, and is finding more tasks and positions difficult. 
It is time.

We have so much to thank God for.

- It's been 4 years since I first thought surgery was imminent as I wrote about in this post
- She is now eligible for Magec rods which I first wrote about here in 2011 and hoped would be an option 
- This is the last brace! And what 7 year old Taylor Swift fan can resist heart and rose tattoo print




Tuesday, 3 March 2015

New Wheels Arrive!

Thanks to the amazing generosity of so many people, the 'Wheels for Evie' wheelchair arrived last week. There was a lot of excitement (from all the family).
We are so excited about this chair in so many ways. It is a manual (Zippy) chair base, but has a power attachment (ZX1). As a result we have two chairs in one. This means we can still use the lightweight manual chair and fold it up in the car, but that she can also independently attach it to a power base. 

This amazing chair gives her independence and control over her own mobility. Yet we don't have to have a modified car like with most power wheelchairs. The school has paths and ramps so she can access all areas. The main issue we have to deal with is stopping her from increasing the speed and basic driver training! She wouldn't let me put 'L' plates on, but there have been a few moments I felt they were needed. She's perfecting wheelies and donuts.

We are still astounded of the generosity from friends, family, church, school, community, anonymous donations, Lions, as well as complete strangers. We are very thankful to God for the amazing supports he has given us.


First trial                         -                         Off- road                         -                       Watch out Sam!

Saturday, 14 February 2015

Welcome to Holland

c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must
stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.