Imagine if this was your child. Happy, healthy & full of life until one day...
One year ago, Jessica Dunne was a healthy 19 year old that had finished Year 12 at All Saints Anglican School, and was working full time. Last September Jessica’s life, and that of her family, was shattered after Jessica was struck down with The Meningococcal Virus. Jessica spent 3 months in Intensive Care at the Gold Coast Hospital after undergoing a craniotomy to reduce the swelling in her brain. Her prognosis wasn’t good.
But Jessica is a survivor, and while she is still in Robina Hospital, she is on the road to recovery. She still has a tracheostomy and a gastric feeding tube. She has limited movement, can’t eat or speak, but is very aware of her surroundings and communicates with her eyes with yes/no cards.
Jessica’s mum, Karen, has been at Jessica’s side for the last year, and would like to bring Jessica home to rehabilitate her enough that she can be accepted into a rehabilitation program. Karen worked full-time until Jessica’s hospitalization. She spends all day at the hospital giving Jessica physiotherapy and massages. She now works night shift, however, once Jess comes home, Karen will be needed to give 24hour/day care. This means she must go onto a carer’s pension, which is unsustainable, if she is to care for Jess. Karen must also renovate her home to make it suitable for Jess with her disability.
Karen desperately needs the help and support of the Gold Coast Community to able to achieve her goal of making Jessica better. Karen needs the following:
Help with physical therapies with Jessica.
Donations towards a trip to China in August 2010 for Stem Cell Treatment
A car suitable for someone with a disability.
If you would like to help Jess in her journey forward, click here to make a tax deductible donation.
This was the story as reported by Katie Miller on October 20th, 2008 in the goldcoast.com.au website
Deadly Bug Strikes Gold Coast Teen
A TEENAGER is in intensive care in the Gold Coast Hospital after being struck down with the potentially deadly meningococcal bug. Jessica Dunne was in a serious but stable condition yesterday with meningococcal meningitis, or inflammation of the lining of the brain caused by the meningococcus bacterium.
The 19-year-old's mother, Karen Dunne, said Jessica had first gone to a doctor about four weeks ago with viral symptoms and was told to go home to recover. "She went home and the headaches got worse and she got a stiff neck," said Ms Dunne. "The doctor came to the house and diagnosed it as meningitis, swelling of the brain and rang an ambulance."
Jessica was taken to Robina Hospital and later moved to the Gold Coast Hospital when her condition became critical. Gold Coast Hospital registrar Dr Adam Visser said yesterday Jessica's condition was still serious but she was making improvements daily. The All Saints Anglican School 2006 graduate is conscious and has had her eyes open for about the past week. "She's still on a ventilator which is helping her with her breathing but not any other forms of life support," said Dr Visser.
He said Jessica had the B strain of the neisseria meningitidis bacterium, commonly called meningococcus. "The bug can cause two different patterns of illness, one of which is the septicemia which causes septic shock and multi-organ failure and the other pattern of illness is the meningitis," he said.
"Jessica's had just the meningitis and she's never had multi-organ failure." Dr Visser said the intensive care unit more commonly saw meningococcal patients with septicemia, which is classically associated with a red-purple rash. Ms Dunne said Gold Coasters needed to be vigilant when virus-like symptoms appeared. "They can turn into something more serious -- be careful for a stiff neck and major headaches," she said.
Ms Dunne said the past four weeks had been traumatic for the family. "We nearly lost her twice ... so we're not holding up really well," she said. There are generally about 12 to 18 cases of meningococcal disease on the Coast each year. The latest population health statistics showed that there were five local cases in the first half of the year.
Gold Coast Population Health Unit medical officer Dr Don Staines said yesterday meningococcal disease could occur at any time of year but was more common during spring. He said it occurred in people of all ages but the number of cases tended to peak in young people aged up to five and between 15 and 25. Dr Staines warned that even though there was now a vaccination against meningococcal C, other groups could still be circulating.
"Towards the end of the year, particularly after the flu season, meningococcal organisms do circulate and there is a tendency to have more cases between now and Christmas," he said. "We all carry the organism from time to time, there's nothing unusual about that, but what is unusual is if it invades the bloodstream where it can go on to cause the disease that we know of ... and will progress very rapidly."
Dr Staines said locals should be aware of the symptoms of meningococcal, which include the sudden onset of fever, headache, tiredness, neck stiffness, joint pain, a rash of red-purple spots or bruises, dislike of bright lights, vomiting and nausea.
Dream Workers are helping Karen by organizing everything on Karen’s wish list, but to achieve this, we your need support.
Update on Jessica from Karen 26th August 2009:
Yesterday Jessica and I went to the Gold Coast Hospital to see the ear, nose and throat specialist for her 3 monthly check up to see if the vocal cords were working yet....to my great surprise, they are working!
I was able to see for myself via a small camera inserted through Jessica's nose down her throat and the pictures were relayed onto the screen at the doctors surgery.I was unable to control myself as my tears flowed freely whilst watching the vocal cords move back and forward. Jess shed a tear too, that made me cry more of course.Even the specialist was surprised as 3 months ago there were too many secretions and no real movement.
What does this mean, you may ask?
It means Jessica will be able to have the tracheotomy removed as soon as we build up the strength in her breathing up her throat and through her nose again and we make sure her swallowing reflexes are strong.
This is done slowly with a speech therapist and myself monitoring her breathing and swallowing by deflating a small balloon attached to the trachy in her throat allowing normal function. This balloon stops secretions from falling into her lungs whilst her vocal cords were apart.As soon as we are satisfied that Jessica can manage her own secretions by swallowing properly and breathing well through her nose...out it will come!
* Jess will also be able to eat again and enjoy taste sensations which will in turn stimulate the brain.
* Breathe normally
* Speech can be possible once the brain connections return.
All in all a great day and another step forward.........
love to you all,
from Karen, Jessica, Kelly and Monique xxx
Update on Jessica from Karen 19th September 2009
Hello everyone,
Its nearing the end of September and I have some interesting news for you all about Jessica's progress!
Firstly, let me tell you that Jessica, the speech pathologist and I have been working on removing Jessica's tracheotomy out of her throat this month.This involves putting a coloured food dye into her mouth to see if Jessica's swallow reflexes are strong enough to push her secretions down the right way and not let the secretions drip into her lungs. Some days have been better than others and we are still working on this trialling for tracheotomy removal.
Unfortunately the public health system is short staffed and we cant do this treatment everyday as required. I am notifying the intensive care nurse at the Gold Coast Hospital of Jessica's plight to see if she will come and give Jess a second opinion on the situation. This could give us more assistance from this very experienced nurse in the field of tracheotomy.
I attended a conference last week and was able to meet and talk to a Professor Harry McConnell with 20 years experience as a NeuroPsychiatrist specialising in disability.He has a particular interest in Epilepsy and people with multiple disabilities. The Professor knew of Jess and agreed to go and see her and I the following week.
I showed him Jessica's abilities with movement and awareness and in his opinion Jessica legs and arms should be worked to learn to walk again as he felt Jess has just forgotten how too!
Wow....was I excited.So we discussed how to go about this using cross patterning techniques with her arms and legs on a bed firstly,then getting Jess up on her feet using a frame to lean on and using a head and neck support brace.
I will let you know how this goes as we will probably have to do this at home and not in the hospital due to time limitations for rehabilitation on each patient and the inability of the physio team at the hospital to see the possibility of getting Jess to walk again. Professor McConnell did warn me that it was not for certain but definitely worth a trying to teach Jess to learn to walk!!!!
* Jessica will be having acupuncture to relieve the tightness in her left arm and fingers this week to see if we can reduce the spasticity on her left side.
Also Jess is having metronome sounds( like a ticking clock noise) going into her left ear using an iPod and earpiece to help correct the right side of her brain to enable reduced spasticity in the left hand side of Jessica's body.
* Appointment forthcoming to see a dentist privately outside the hospital system,to give Jess relief from clenching her teeth by using a tens machine on the jaw muscles. This might allow her to open her mouth.
* An appointment has been arranged for me to fly to Melbourne to see a Professor Olver, a neuro rehabilitation specialist at the Epworth Hospital, on Oct 27th.
This visit will enable me to take a video of Jess for the Professor to see and get more ideas and hopefully a programme we can follow for the rehabilitation of Jessica.
*The professor and team at the QLD Brain Institute was unable to be of any assistance.
*A company from Brisbane "Lifetec" did a communication assessment on Jess last week and have assessed her for a eye gaze computer worth $15,000.00.
This will give Jess a voice until hers comes back, and a interest for her to use the internet MSN, Google etc, using her eyes only and can be upgraded to accommodate a mouse device when she is able.The Government will pay $5,000.00 toward to computer. Jess was very interested and really focused for the whole hour when that computer was placed in front of her!
I have arranged for a trial with a loan computer as, requested by the government, to be sent to the hospital on 29th Sept for a 2 week period. If Jess can use it well enough we will buy one for her,with everyone's donated funds.
* I will be looking at 2 different physio therapists this week to see which person has the best repore with Jess and the best ideas on working with her.
* Reiki healing , massage, visitors for company and therapies are all taking place each week.
Funding has been approved by the "Youngcare"organisation to help with money for remodelling of the house and or equipment to the value of $10,000.00
I am still awaiting a reply from the ministers I sent the email to requesting funding to bring Jess home.Our local MP on the Gold Coast called me to see if I had a response and he will now follow it up on my behalf.
I will let you all know how Jess goes with all these treatments being put into practise as soon as possible......thank you, thank you ,thank you everyone
Please go to www.dreamworkers.com.au to see what's new in the way of fundraising events and news on jess.
A special big thank you to Deb Smith from Dreamworkers for all her hard work.
Lots of love and gratitude from Jess, Kelly, Monique and Karen xx
Update on Jessica from Karen October 23rd 2009
Hello everyone,
A lot has happened in the last few weeks with regards to getting Jessica home to live and have the rehabilitation she requires. Firstly I have unofficial notification of a financial funding package that will enable me to have carers and nursing staff come to the house up to 8 hours a day. The money can also be used for therapist, medicines and supplies.This leaves our fundraising money to be spent on rehabilitation equipment. I am presently choosing a recognised service provider by the government to accept the funding and manage it on our behalf for the staffing and payments of items.
A big thank you goes to Genevieve from "Youngcare" whom made the phone call to the right person in the disability funding area of the government and made it happen. I was told there was no money available for funding until 2011.
Renovations will take place on my home as of 26th Oct so that could mean Jess will be home for Christmas!
Jessica has had the Erica Eye Gaze computer to trial but we have had software difficulties in using it. We will have the computer longer to be able to troubleshoot from Sydney and get it right before asking Jess to operate it herself. I will keep you all informed.
The "Mindflex" item has arrived from America, thanks to a relative of mine. this game won toy of the year and not released in Australia yet.
I am looking forward in trying it myself as you wear a headset and you use your mind to focus on a light weight ball and move it upwards and through hoops around the circular game using your mind only.
Great exercise for Jessica's mind if she can master it.!
Carly Deeth, a volunteer physiotherapist, worked on Jess last week and gave her a beautiful massage and then worked on her ankles to gain responses.....and did!
It was very exciting to see Jess focus on her ankles and then see movement on command and then to relax when asked her to. Thanks Carly!
Carol Horrigan,a specialist in complementary therapies also got some great responses in the same area around the feet, ankles and muscles up the leg on Saturday... Carol has worked on these areas on Jess using reflexology and pressure point manipulation. Just shows us that Jes is improving and regaining more and more every day.
Jess is showing more facial movements...even twitching her nose.!
The new tracheotomy placed in Jess Monday last week,has improved Jessica's breathing ability as the last one was too small and made it almost impossible for her to breathe and cough. We are still working hard to have this removed before Jess comes home. As soon a her swallow refex is strong enough we can have it taken out.
In general I will have to say Jessica is looking really well in her face and showing more awareness each day.
A big focus now will be stimulating her brain and getting results which will in turn inspire Jess to try harder and harder as I am sure she will.
Love and thanks to you all xxx
Update on Jessica from Karen 22nd November 2009
Hi family and friends,
It has been a very busy month due to travel to Melbourne to see doctors,moving house whilst the renovations are being done at my home plus lot of wonderful people bringing their expertise to Jessica at the hospital to help her recover.
I had arranged to see 3 doctors in the neurological field of medicine for advice.....
1.Professor John Olver MBBS, MD (Melb), FAFRM (RACP).
Academic Chair of Rehabilitation Medicine. Chairman, Rehabilitation, Psychiatry and Pain Management Clinical Institute.
I spent 11/2 Hours with Professor Olver discussing Jessica and her rehabilitation and his attitude to recovery is just like mine. People like Jess surprise the medical field time and time again...never give up, give people the best rehab you can and watch them progress. The time period for recovery is usually 2 - 5 years then it slows from 5 - 10yrs and can progress again.I discussed all the equipment we are purchasing for Jess and Prof Olver took my brochure on the GIGER MD to show his rehab unit as he was so impressed! All the equipment we are having for Jess is excellent and will give her a great opportunity for recovery ie;, GIGER MD, Eye gaze computer, Pool hoist, sit to stand chair and tilt table.
I was told what we are doing for Jess is better than what any hospital in Australia could provide at this stage of her recovery and he was astounded at the generosity of the Gold Coast community and the support both financially and with the hands on help with rehabilitation.
Prof Olver has offered to be available for advice with our doctor on the Gold Coast and will be kept informed of Jessica's progress via email and video. As soon as Jess shows the ability to benefit from the Epworth Hospital Rehabilitation unit, Jess will go for a 3 month stay under Prof Olver's care.
2. Dr Joan Tierney
Brain Rehabilitation consultant at Kew, Melb.
My consultation with Dr Tierney lead to referrals to the best neuro rehab Physio, Occupational therapist and Speech Therapist in Melbourne. All 3 specialist have offered their support with my team on the Gold Coast. Physiotherapist Margaret Darcy will arrive on the Gold Coast for 2 days, 7th / 8th Dec to train me, physio's,carers and friends and family in the best techniques to use for working with Jessica.
Dr Tierney came to the Gold Coast to meet Jessica and spent 2 days with us showing me useful techniques. This visit was in the doctors own time whilst she was in Queensland on holiday just 1 week after I was in Melbourne.
3. Dr J Joubert, neurologist, Epworth Hospital
Dr Joubert initiated the referral to Prof Olver and I was offered the opportunity to meet with Dr Joubert after my appointments to discuss the outcomes of my visit to Melbourne. Dr Joubert has a daughter at Bond University and will be visiting the Gold Coast soon and will be seeing Jessica when he is here next.My daughter Kelly and Kelly's friend,Tessa were able to put me in touch with this Doctor. (A father of a friend of Tessa's,)
NEWS FLASH.....
Jessica has shown us that she can communicate "NO "by shaking her head from side to side vigorously. This accomplishment happened after our private physio Tina Parker, stretched her hamstring muscle in her legs. Jess's reaction was to pain during that session. The next day I was cleaning her teeth and she shook her head "NO" to me too...
Michael Woods a sports physiologist has been working with Jess this week and showing some interesting movements out of Jessica's limbs and has offered to see Jess regularily. A program will take place for Jess and will require visits to his practise to use rehab equipment. Carly Deeth, physio, has been getting results from Jess using pressure point techniques too. All in all an encouraging week of accomplishments for Jess.
Training of the carer staff has begun at the hospital so we are well trained before going home with Jess. There are 2 appointments for Jess at the Gold Coast Hospital comming up soon. This wednesday Jess will have the feeding tube, from her tummy, changed to a smaller less obtrusive device. On December 1st is the appointment with The Ear, Nose and Throat doctor to see how close we are in getting the tracheotomy out of Jessica's throat.I have managed to find a wonderful Speech Pathologist Jillian Caig,( thanks to Carly) whom was working at the John Flynn Private Hospital. Jillian is due to have a baby in the next few weeks but has offered to work on tracheotomy removal for Jess at our home.
My house is under extensive renovations at the moment as the guys are working so hard to get Jess and I home as soon as possible. Thanks to all the volunteers doing some of the heavy manual labouring work on weekends!
The fundraiser night was a great sucess in everyway possible. The night raised over $30,000.00 which means I can now place a order for the GIGER MD machine form Switzerland.
A detailed report plus pics will be reported on separately.
The fundraiser from the netball carnival raised $11,500.00 to enable the purchase of the eye gaze computer.
Thank you everyone,
love form Karen xx
Update from Karen 30th December 2009
Hello family and friends,
You are probably wondering what has happened to us as I haven't been able to do a news letter for awhile and as you read you will understand why.......
Jessica was discharged from Robina Hospital and into my care at home on the 14th December 2009.
I was able to take Jess home for a few days leading up to discharge to make sure I had everything in place and that I was confident with medicines, equipment and get Jess used to my fabulous carers helping me with Jess for up to 8 hours a day.
The house has been beautifully renovated and styled with ex display furnishings and stunning prints and paintings for the walls. I even have new cutlery,plates, linen and accessories.
Jessica seems to be really relaxed at home and enjoying the peace and quiet.
All has not gone without problems though....I was warned that there would be ups and downs with Jessica's health.
On Wednesday 16th December Jessica coughed a dark substance into the swedish nose ( trachie piece). I called Robina hospital for assistance and I was told Jess was no longer a patient and therefore I had to seek help outside the hospital.
After some thought and advice I called the ambulance and Jess was transported to Gold Coast Hospital and given a blood test and chest x-ray. The test showed an infection on the left lung and Jess was admitted to the respiratory ward at Gold Coast Hospital that afternoon. Antibiotic drip was set up for Jess straight away and we were able to treat the pneumonia before it developed into a serious infection.
Jess had a strong smell from the trachie area for months at Robina hospital and she had been vomiting everyday. This is not acceptable or normal.The dieticians were surprised at the speed the feed was set up for Jess and immediately reduced the speed. Feed time was altered to overnight and the strong odour was the sign of a chest infection. Unfortunately all these problems were not addressed at Robina Hospital and Jess was discharged in an unwell state.
Thankfully Gold Coast hospital have addressed the issues and Jess came home with antibiotics for 5 days and is now recovering. Jess does not need much suctioning and there are less secretions and hardly any coughing of mucus form the chest and the odour from the trachie has gone.
Tilt table is a daily routine for Jessica as is gentle exercise and desensitisation of the mouth area using gentle facial strokes shown to us by the physio from Melbourne.A video of the physiotherapist ,Marg Darcy ,was filmed at the hospital of movement therapies so we don't forget any of the invaluable information shown to us on Jessica whilst here on the Gold Coast for a consultation.
Cuff deflation trials in preparation for tracheotomy removal have ceased due to the chest infection. An appointment with the ear, nose and throat specialist, Dr O'Neil, to check for a commencement will take place with my speech therapist, Melanie Smart, present with us on the 7th January 2010.
Other therapies will begin after the holidays as most people are away and Jess hasn't been well enough anyway.
Jessica is showing more movement with her body and limbs, usually to stretch in the mornings and when she feels like it. The eye gaze computer is with us at home on trial until the 5th Jan. Jess shows an interest in it and tends to open the food page every time. Jess hasn't mastered the computer yet and she hasn't been able to talk to me using this medium. I do need to have some assistance using this piece of equipment, if there is anyone with computer skills willing to help with this please call me at home 55722869.
I hope you all have a wonderful New Year !
I see this New Year as a new begining for Jessica with your help and support, thankyou....
Love from Karen
Update 15th December 2009
Jessica came home from hosital and had her first overnight stay at home last Friday. It all went really well and has allayed Karen's worries about whether she is ready to care for Jessica.
Karen is well prepared and we look forward to the next year to see how Jess is progressing.
The renovations are mostly finished inside, and once the Christmas rush is over, Dream Workers will set to work with the builders and landscapers on renovating the garden for Karen and Jessica. We have a lot of offers of help from volunteers to help with this work.
Once the renovations are completed inside and out we will be holding a BBQ for everyone that has been involved with the renovations to come back and see the job completed.
We will keep you posted on this date.
The house is looking fantastic now that the inside is just about finished. As Karen said, it feels like a whole new start for herself and Jessica on the long road to recovery.
The therapists working on Jess are starting to get some good movement from her, and are really excited with her progress.
Thanks again to everyone that has supported Dream Workers through the renovations and your generosity of time and donations is very much appreciated.
Best Wishes for a wonderful Christmas to you all,
Deb Smith
Update on Jessica 26th March 2010
Jess continues to make great progress since she has been home and looks so happy and contented whenever I see her.
Karen now has carers support at home for 5 hours day to help with the care of Jessica.
Jess receives regular home visits for speech therapy, physio and is learning to hold her hands above her head and slowly drop them.
Karen has been busy researching different therapies to help Jess reach her maximum potential and had decided to take Jess to China for stem cell therapy later this year.
Karen has also been involved with an ad for Youngcare, and is now an advocate for Youngcare after the support that she received from them in hleping to bring Jess home.
Thanks must go to Harcourts Foundation who have generously donated $9,000 to Dream Workers for Jess and to the members from Hope Island Golf Course who raised nearly $12,000 at their annual Christmas Party in support of Jess and Paradise Kids.
Karen is still sourcing different opinions to have Jessica's trachestomy removed.
Deb Smith
Hello family and friends,
I have been doing a lot of research on this sem cell treatment and I really feel this will be very beneficial for Jessica.
Stem cell treatment will come to the western world eventually, its only a matter of time. I want Jess to have every opportunity of getting well......please be supportive with my intention to take Jess to China.
I need everyone of you to understand that I want to give Jess a quality of life and her safety is always considered. We are very fortunate to be able to access this treatment for Jessica right now, even if Jess regains a removal of the tracheotomy, better head control or to be able to eat will be a bonus!
Regards
Karen xx
Recommendation of medical plan from Dr.Zhou of the Beijing Tiantan Puhua Hospital:
4 separate injections of Neural Stem Cells (NSC) administered via lumbar puncture (injection at the lower back) into the CSF (cerebral spinal fluid).
You may be assured that any treatment option will be carefully explained to you before final decision is taken.
The procedure is under a 5 week treatment program which also includes:
Oral medications and daily IV with supplements and medicines to support the safety and effectiveness of stem cell implantation
Daily (5 days a week) Physiotherapy and Occupational therapy sessions
Daily (5 days a week) treatments of Traditional Chinese Medicine that can help to improve general pains and discomfort, blood circulation, internal organs functionality, sleeping, digestion, and general strength.
What are the improvements you may expect from the treatment?
As previously explained every patient is different and responds differently to the treatment. It is important to understand that no improvements can be guaranteed.
We do not expect to see major improvements after one treatment cycle, as the damage in Jessica’s case is very extensive.
In the past we have seen better neck support, and the treatment might improve Jessica’s response to vocal and physical stimulations.
Update on Jessica April 2010
Hello family and friends,
It is becoming harder and harder to sit down at the computer and write updates as most of time is spent with Jess now she is at home as I'm sure you all understand.
I know you are all eager to find out where we are now so here goes......
Jessica is doing well and seems very relaxed and contented. Jess is sleeping well right through the night sometimes without coughing.I very rarely need to suction Jess to help her with the build up of secretions, she is managing them herself well. Today we had an appointment with the Ear Nose and Throat specialist to see if Jess has improved enough to start tracheotomy trials to remove the tracheotomy and the answer was YES!!!!!!!!
The airway was clear, the vocal cords were moving as they should and the secretions were able to be swallowed effectively enough for Jess to be given the go ahead to work toward tracheotomy removal.
The ENT Doctor was really surprised at the improvement ...........we weren't as anyone visiting or working with Jess have seen the improvement in the last few months.The first cuff deflation trials start Saturday with the speech pathologist and from then on its up to me to continue working on building up her swallow strength and breathing up via the vocal cords through her nose.I will be referred to the speech pathology department at Gold Coast Hospital to see if a trained therapist can be located to work with a a-stim unit, VitalStim, that will enhance Jessica's swallow reflexes."VitalStim Therapy" is the only form of electrotherapy for dysphagia therapy cleared by the FDA; muscle re-education by application of external stimulation to the muscles necessary for pharyngeal contraction.
The stem cell treatment in China will have to be put on hold until the tracheotomy is removed . I have been advised to do so by the Chinese doctors as it will make physiotherapy and other treatments easier on Jess whilst in China.
Hopefully Jess and I will go around August all going well with the tracheotomy removal.
A presentation of a $9,000.00 cheque from Harcourt's Real Estate nationally to be used for travel to China, will take place on the 13th April at my home and featured in the local Gold Coast Bulletin
I will be visiting the Queensland Brain Institute at UQ university at the St Lucia Campus in Brisbane on Sunday 18th April 2010 for UQ Centenary celebration day. The day has been arranged to meet and greet the neuroscientists and PhD students who are working on developing new therapeutic approaches to treat diseases including aging dementia, mental illness,epilepsy, motor neuron disease,stroke and brain and spinal cord injuries.
I have been referred to another therapist for Jessica .....a cranial osteopath, Mr Joyaa B. Antares( British) we see once a week
Jess is off all medication except for a anti depressant now! A number of homeopathic medicines are given to Jess to enhance her health and well being.
Cranial Osteopathy
Osteopathy has different sub therapies in it, like visceral osteopathy and cranial osteopathy. Cranial osteopaths are trained to feel certain subtle changes that take place through out the head and the body. They call this process the cranial rhythm, this movement is very subtle and takes highly skilled practitioners to feel the rhythm. This theory of cranial osteopathy is rejected by many orthopaedic doctors who believed that the cranial bones fuse by adolescence. It has been historically proven that there are some fibres between the cranial bones called sharpey's fibres which appear only at places where tissue movement is allowed. The original principles of cranial osteopathy have evolved with the research and development of modern medicine. The cranial osteopathy refers to movement between the flat bones of the skull along the sharpeys fibres, proving that the brain does pulsate.
Exactly how the mechanism works has not been proved scientifically, some theories suggest healing dysfunctional cranial rhythms improves the cerebrum spinal fluid flow to all the peripheral nerves thus increasing the metabolic outflow and nutritional inflow of all the spinal nerves. This in turn improves all the visceral organic functions and nervous reflexes. Those that have not had any direct beneficial effects from this therapy argue that it is with out scientific base but some have experienced the healing powers and experienced emotional releases, lightness and buoyancy and visualizations.
As always, I will keep you all informed of Jessica's progress.....................talk soon, love Karen
Update on Jessica April 26th 2010
The process of tracheotomy removal is progressing as Jessica is getting stronger with her swallows and self management of her secretions. I am working with her to build up the time spent without the tracheotomy doing the work for her ,so as soon as Jessica can maintain this procedure for 24 hours of more it can be removed.
Great new progress for Jessica
jess now anticipates when I need to place a sling behind her head and back and she moves her head forward for me!
Jess also lifts her face upward when she knows I need to place a flannel under her cheek and mouth area!
Jess moves her head to the side I am turning her too.!
This means Jess is thinking and participating without instruction!
I have always felt she understands but to understand and then make her body do as she asks is a great step forward!
I have decided to employ a personal trainer for Jessica every second day.
I feel that whilst we are working on her being upright on a tilt table and using the Giger machine for exercise we are still not getting any weight barring exercise for her ie; kneeling or holding her body weight on all fours.So I think having a male personal trainer come and work with Jess every second day to build her strength and encourage her,could only push Jess forward and compliment the other therapy sessions in place.
Sunday 18th, Monique and I went to The QLD Brain institute open day to see what the Neuroscientists are working on and to gain any knowledge that may help Jess, of course.
After visiting numerous scientific displays we came across a neuroscientist doing a presentation on his work. I discussed Jess after he finished his talk and he shared his thoughts with us.Dr Zac told us that stimulating the brain both physically and mentally alongside stem cell will be the best approach to help rehabilitate Jessica. There is no medication to reconnect the damage.
The way he described a brain injury is like......"smashing a computer on to the ground and painstakingly putting it back together again".
The Youngcare organisation have played a large part in Jessica receiving her government funding package to enable Jess to come home with a team of carers and finance for consumables items and therapy. Therefore when I was asked if we would be apart of a national TV advertising campaign to promote awareness for the wonderful work they do I didn't hesitate to say yes.
As of 26th April you may see Jessica in these advertisements outlining the help we received with government funding including $10,000.00 grant from "Youngcare At Home Grant " to make the necessary changes around our home.
I was a guest speaker at the opening of "Youngcare connect" a phone line service for people in a crisis situation with young person.This free service will assist people in distress with guidance through the government agencies providing support and financial assistance.
Update on Jessica 17th May 2010
Hello family and friends,
I have had confirmation from Singapore Airlines to say that Jessica can fly on their airline to China to enable Jess to have stem cell treatments.
Jessica and I leave for Beijing ,China on Monday night 2nd August 2010. We arrive in China on the Tuesday 3rd august. I am very excited and nervous as you can imagine. I am sure Jess will handle the trip well as we will fly business class giving her the opportunity to lie in different positions throughout the flight. We do need to change over in Singapore for the flight to Beijing, there is a few hours between flights.I am going on my own with Jess and that is my choice as I will have help getting on the plane and once in China I can have carers for a nominal fee to help with Jess whilst in the hospital. My accomodation is located in the same room as Jess and we have a kitchenette and our own bathroom facilities in this 25 bed hospital for stem cell treatments.
The treatments of 4 stem cell implantations(via a lumber puncture in the spine area) plus accupuncture, chinese medicines, IV medicines, daily physiotherapy and O/T therapy will take 35 days and we will return on 8th September.
I will try to be on skype for those interested and I will blogg and email and take photos of Jessica's progress.I will attempt to video as well if the technical side of me can cope!
I have enlisted a few more therapists for Jess......Speech pathologist, Carol Bishop, from Multimedia Speech Pathology.Carol will work with Jess once a week for 1 hour at our home on communication.
Occupational therapist, Jacqui Leggett , once a week for 1 hour in our home.
Personal Trainer/remedial massage therapist, Mark Aldous, 1 hour twice a week.
The tracheostomy has been slow going, not necessarily for Jessica and her progress but finding the therapist to work with us on the Gold Coast. I have pushed for assistance from my 2 ENT specialists and I will be given a referral to see a specialist in Brisbane with experience in long term tracheostomy patients with the view of removal once Jessica's swallow reflex is good enough. This will entail a week in hospital once Jess is ready for removal of trachie but that may not be until we get back from China now.I will let you all know what the plan will be after I see the specialist.
Jessica has been trialing an "eye gaze computer" for the last few weeks. Unfortunately this hasn't worked out for Jess just yet, as it is still hit and miss for her and this equipment is worth over $20,000.00 to purchase. Jess needs to work really well with it to be of value and not a frustration excercise for her.This does not mean I have given up on this form of communication for Jess as Carol Bishop, Speech Pathologist has computer program software that will be more suitable for Jess to use effectively on our own large screen computer at home.
I will be taking Jessica to a conference on the Gold Coast on the 24th May to see and speak to "Spectronics" about specialised equipment to help Jess. If there is anything out there that will help Jess I will find a way to get it for her......I bet you knew that.
Talk again soon,
love to you all......Karen xx
Update on Jessica July 13th 2010
Hello family and friends,
Only 20 days before Jess and I head off to China but I had to let you all know of some wonderful progress Jessica has been making of late!
I have 4 fantastic people working on Jess and her mobility right now..........
Sue Finch, Feildenkais/physiotherapist, Carly Deeth, physiotherapist, Michael Woods,sports physiologist and Mark Aldous, personal trainer/remedial masseuse.
All of these people have helped to get Jessica move her body on command and trigger the connections from the brain to the limbs.
When Mark was working with Jess this week he was able to get Jessica to lower her arms slowly from above her head to the sides of her body whilst in a lying down position.
At first Jessica would only bring her arms down whilst Mark raised her legs and gave them a stretch. The stretch gave Jess some discomfort and she pushed her legs and arms down to ease the pain.
Now Jess will lower her arms from above her head on command without the need of causing discomfort by raising her legs at all !!!!!!!!!!!!!
This means the connection from the brain to the limbs is taking place.
We saw this once before with Jess shaking her head "no" when feeling pain whilst having physio, now she shakes her head at me to let me know when she is uncomfortable or wants me to stop doing whtever I am doing.( Jess doesn't like her teeth being brushed sometimes.)
You don't need me to tell you how I felt after seeing Jess do this several times for Mark and then for me and these improvements are taking place before stem cell treatments.
As for the tracheotomy, Jess is tolerating cuff deflation all day now which means Jess is closer than ever to trial having the tracheotomy removed later in the year.
I am so very proud of Jessica's strength and determination to work so hard to progress.
love to you all,
Karen xx
Article which ran in the Gold Coast Weekend Bulletin, 3rd October 2009
Click here to see Jess going up on her tilt table.
Renovation Photo's
Click here to see all the before and after photo's from the renovations.
What started as a basic renovation to allow Jess to come home from hospital soon became the entire house with the generous offer that we received from businesses in the Community to lend a hand.
The main areas that we needed to renovate were the bathroom, which had to become wheelchair accessible - this meant the entire bathroom had to be redone. We were also asked to redesign Jessica's bedroom for someone with a wheelchair, and we needed to build an extension for Jess to have a therapy room.
Renovations are still continuing into this year as we start on the outside of the house.
Thank you for the generosity provided by the following sponsors:
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