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Author Topic: journey of bi-lateral derotational osteotomies of tibias for my daughter  (Read 51819 times)

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Offline vl7007

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I thought I would change the title of this subject to reflect what has been happening over the past couple of years, unfortunately I don't know how to transfer this to a different area, as I feel that it would probably be better in another area after all this time, and after kat has undergone 4 osteotomies so far.  Anyway not much has changed on our home front, still waiting for the cardiac specialist to progress, and also waiting for general physician to take over and try and find some answers.  The genetist has contacted us and is sending out the test kits, so we can start that process.  Where we live is so damp now that the concrete around the house is shifting and starting to sink, and the ground is constantly muddy.  I got a builder out to check the brick work as it has rising damp now due to the consistent rain since the floods back in January.  So any work modifying the bathroom and laundry may need to be put on hold for a bit, it may just make us move more quickly.  Oh well, enough of a whinge here, I am off to bed before I have to get kat up for the next round of hospital appointments starting tomorrow morning.  Hope everyone is doing well out there, and remember  Tomorrow is another day.  At least one can still smile.

kats mum ...vicki

Offline vl7007

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Hey everyone,

Well another month has passed and plenty has happened here.  Our weather has cooled dramatically, so that kat doesn't need the air conditioning on now, just a fan to rotate the air in her room.  Mind you we are now in winter.  Another benefit is that her blood pressure has stabilized some what so they only need to do tilt table therapy  once a week now.  Although her pulse is still high.  Now she just needs to get over a chest infection prior to starting hydrotherapy.  So that is good.  Her cardiologist was sick so that appointment was postponed until the 7th July, so we will hopefully find out more answers then.  The general physician was quite intrigued by Kat, and wants other members our extended family  medical history along with genetically tested some of them to help with diagnosis.  This doctor feels that Kat has a long journey yet. 

After six months of waiting her electric wheelchair arrived and Kat was out and about the following day.  It was great to see her able to get out independently.  Someone still has to be with her in case of collapse but she is in control and navigating where she wants to go.  This has really boosted her confidence in herself.  So Kat decided to attend a Youth Forum in the city with the Dalai Lama speaking about over coming adversity for young adults with chronic illness and disabilities.  To her surprise he came over to talk and pray with her.   At this event she made contact with other young adults in wheelchairs and realized that she is only limited by her own mind, so she is now determined to get out more and return to the real world by going forward, instead of staying in bed in pain.  This event had such a huge impact on Kat that she has been happier in her self.  Yesterday she even went out to meet up with some old friends from school and go to the movies.  Having the electric wheelchair with with gel seating and tilt in space back rest and seat means she can easily change her position and not be in as much pain.  With this chair she can sit up for around 5 hours without crying instead of 1 to 2 hours.  So the impact on her is really dramatic.  Hopefully she can now look at returning to college (TAFE) an continue her studies. 

As for her legs, well they are still twisting and she can only wear the KAFO's for short periods of around 1 hour before the legs swell too much, she now wears graduated tubigrip under the prosthetic sleeves and tubifast over the top under her KAFO's.  After the tilt table therapy both the physio and I stand either side of her at the parallel bars holding waist grip belt that sits over her stomach binder ( the stomach binder is used to help with the blood pressure ) and help her to walk.  Currently Kat can do around 10 meters without stopping which is really good.  But her quads look really weak.  The problem is if we build them up to much more her ligaments become more loose so it is really a tough balance.  All in all though I feel it is good progress as does the physio at present.  Whilst this is good, her hands have deteriorated and we have to look at splinting her fingers and wrist, as her fingers bend too far backwards causing pain when she tries to use a knife and fork which means that she can no longer hold a fork properly or cut up her food.  Also her wrists are popping when she uses the wheelchair commode or manual wheelchair around the house.  We have an electric hoist for her now but unless it is too difficult, Kat still prefers to self transfer when able. 

So you see plenty has happened of late but progress is slow as usual.  At least Kat is smiling big time.


Catch you all later

Kat's mum       vicki

Offline Snowy

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That's fantastic news both about the wheelchair, and about Kat's reaction to her experience with the Dalai Lama and other attendees at the Youth Forum. I'm sorry that she's still struggling with the leg twisting and hand problems, but really happy to hear that she's been feeling happier and is able to be more independent and enjoy time with her friends. I hope she knows how inspirational she is to others who read her story here.

Keeping my fingers crossed that progress continues, even if it's slow - and that the smiles keep growing bigger. :)
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #63 on: October 16, 2011, 12:44:39 PM »
Hey everyone,

I know it has been quite a while since I last posted.  Kat's diagnosis is evolving or should I say growing, the General Physician along with the Genetisit have decided that Kat fits the criteria for both Elhers-Danlos and Marfans, combined with an Autonomic Nuropathy and they also suspect a Mitochondrial disorder is also impacting on her.  Needless to say, this has caused additional problems in how the doctors treat her medically.

Due to her heart issues, the Ortho team have decided that there is nothing more they can do.  So that means no more Ortho clinic for now.  Yes her legs are still twisting, but surgery is too dangerous for her and it hasn't really worked so far.  As for her ligament laxity issues well this has spread to encompass other parts of her body, so now in addition to the Cardiac Failure Team physio group, Kat now sees a TMJ physio,  a Bladder physio, and they are also looking at adding in the Respiritory group.  As mentioned previously kat was transferred from the Ortho physio to the CFT physio due to her Autonomic Issues as they couldn't support her.  The goal was to reintroduce hydro, but every time Kat progresses to that level something else goes wrong, and no one will take the risk of putting her into the hydro pool for treatment.

The TMJ physio is helping kat with opening her mouth, as eating, drinking and talking are starting to become a problem.  The Bladder physio is working out whether kat needs to start catherizing to void as she is also loosing control over this function and her bladder is becoming too full.  As for respiritory, well her cough is back similar to whopping cough in sound, but she always tests neg to this, and it also affects her voice, and now she has starting coughing in uncontrolled spazms where she is going blue and breathless.  The Regulatory Cardiologist wants to put a Loop into Kat chest to see whether she will benefit from a simple pace maker or whether she needs one with a defibulator built in. 

Tomorrow we see the Rheumatology group to see whether kat will benefit from pain blocks into to lower spine and hip sockets.  We were told by the General Physician that she have developed cysts in her spinal cord now, so we need to find out what this means.  Besides all of this kat is still keeping as happy as possible, if fact she has started going out with friends to the movies and going shopping with her siblings or on her own the the local shopping center.  Having the electric wheelchair has definately helped in allowing kat some independence. 

If all of this wasn't enough, her father went into hospital for dialated cardiomyopthy, and has also been diagnosed with marfans, and is now in heart failure.  So the past couple of months have been full with hospital, in fact kat sometimes attends the same clinics as her dad, and because of this new development, the Cardiologists have added a Genetic Cardiologist to their group treating both Kat and her dad, so now kat has a Regulatory Cardiologist, an Anuerysm Cardiologist, a Genetic Cardiologist and the head of the Cardiac Department along with the Cardiac Failure Team Physio Group supporting her.

I know this doesn't seem to relate to her legs, but it is all interconnected.  The doctors have also decided to communicate with other connective tissue specialists to help them with supporting Kat now and try and anticipate what will happen next.  We are still waiting for results of the DNA testing, and further testing on tissue samples to see whether there is more that can be done.  In the meantime the doctors would like Kat to consider going into long term rehab, where she says at the centre and they can try to improve her muscle control and function.  They hope to get her up and walking again, along with assisting her with hand skills.

Anyhow this is about all for now, Catch you all later

kats mum,  vicki ;)


Offline lisa424

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #64 on: October 21, 2011, 02:46:46 AM »
Hi, I just read most of this thread. I just wanted to say how touched I was by it all. Kat sounds so brave and is a great inspiration to many of us. It's great that she is staying positive despite everything she's gone through.  I really hope everything goes well and that she'll be up and walking again soon.

-Lisa

Offline vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #65 on: October 23, 2011, 11:15:24 PM »
Thank you lisa424 for your kind comments.  I write on this site to not only for support but it helps me come to terms/cope with the condition of my daughter.  I also hope it helps someone else out there who may be experiencing similar  symptoms, to help them with their journey.  As for kat it has helped that she can talk with friends she has made via internet, and learning that she is not completely alone.  kat has just joined another site for Ehlers-Danlos to communicate with others about its complications with daily living.  The rheumatologist told us that there was nothing that they can do for her pain relief in regards to her hips, as it is due to the cysts in her dura, so now we have to go back to neurology again for more tests.  We were also told that there is little that can be done for it as surgery isn't not always successful, as the cysts tend to redevelop.  Just to watch out for more neurological symptoms, further loss of sensation, further deterioration with bladder and bowel function, loss of control of movement in lower limbs.  The rheumatologist was very empathic/sympathetic to kat's situation, and apologised for not being able to assist but that it wasn't his speciality.  He even phoned up the Radiographer to find out where to send kat to for this.  We are so fortunate to live in a country that has the technology to support kat in so many ways.  As I am on a pension to look after her I would not be able to afford the medical, but here kat gets to see the top specialists in each of their fields (even bring them in from other parts of the country, or teleconference appointments) and if necessary the health dept will send her interstate for additional medical assistance.  I am grateful for the help given.  Our system here is changing to give more support for the disabled so that in theory there will be sufficent funding available when needed for supports that may be required, be it equipment, appropriate accommodation, health, community access, it is great in theory, I just am not certain that it can be funded with the current system.  Time will tell.   I hope that your treatment helps.  Take care and remember Tomorrow is another day.

Kats mum  vicki

Offline mellzie22

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #66 on: November 17, 2011, 02:07:24 AM »
Thank you for sharing your daughter's journey, Vicki.

I just read this thread through as I am looking at having my own derotational osteotomies done. I am glad your daughter was finally diagnosed with Ehlers-Danlos, because as I was reading the thread through, some of her symptoms sounded like that to me. I have systemic lupus and an endocrine related issue that still has yet to be determined. I also have endometriosis. Nothing like your daughter's, but I know what it is like to be young with a chronic illness(es). I am 23 years old right now.

I hope Kat is doing alright and that you continue to inform us about her journey.

Melanie

Offline vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #67 on: January 24, 2012, 07:45:27 PM »
Haven't posted for awhile, due to slipping over getting out of shower and crushing my L2  and moving my L4/L5/S1 which put me into hospital for quite a few weeks including over xmas/new year period, leaving me with some reduced function and sensation on left side.  I am still using rollator to get around and have to rely on others to help care for both kat and myself, which has been a huge learning curve for all.  Despite this kat has been doing well and has learnt to be more independent which is positive.  Kat would bring me pillows and heat packs when I first got out of hospital, and she can definately move around the house faster in her wheelchair than I can at present..  As for her condition, well the doctors are still doing tests, last week she had a bronchoscopy done along with sleep studies, Cscan, and blood work whilst they work out further therapy for her.  They feel she needs help breathing at night now as well.  Kat also now sports a loop recorder which is in internal ecg device that moniters her heart whilst they decide whether she will benefit from a defibulator or a pacemaker. 

But enough of that, back to her legs, the physio team decided that kat was finally stable enough to start rehab again, and prior to arranging to send her into a rehab center for intensive therapy they thought they would try some weight bearing exercises for her legs. They also thought it would help give me respite  so that I had time to heal with my back as they were looking at her staying in for quite awhile.   Unfortunately within 3 weeks of starting the exercises, something happened to her right knee and she can no longer stand without collasping, and due to the loop recorder they are reluctant to do any mri's at present.  The doc's in emergency has just upped her pain med's, and recommended that she go back to her General Internalist Physician for help as the ortho team can't do anything until her heart is dealt with.

So now we are waiting to find out whether kat will actually be able to go in rehab for therapy, she see's the respiritory specialist next Tuesday, and the General Physician in end of Feb.  So I will keep you posted.  Still what keeps us going is knowing that we are not alone and Tomorrow is another Day. 

Keep smiling and thanks for all the wonderful comments from you all.

vicki 

Offline lisa424

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #68 on: January 26, 2012, 08:49:41 AM »
Sorry to hear about your injuries. I was just thinking about kat. It's too bad that the setbacks had to happen after she started rehab again. I really hope that she'll be ok with her heart and breathing. I hope shes still staying strong and positive. Good luck with the upcoming appointments.

Offline fire535

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #69 on: January 26, 2012, 10:25:37 AM »
Just skimmed all your posts you gals are two of the strongest people I have ever read about.  Positive thoughts your way down under hoping for improved quality of life for both of you.  I was so frustrated just reading your saga, it is really a impressive thing you have done you have a stoic soul because for what you have endured both I would be nothing but vehemence and angry,  you have my adoration to say the least. 

Offline vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #70 on: February 10, 2012, 01:59:22 PM »
I am so blessed to have such wonderful support by all of you.  This site really helps keeping us going hopefully in a forward manner.  Went to see our local doctor the day prior to kat's appointment with the Thoracic Specialist to discuss her results only to find out that the trip is too far for me to go in a car (about 1 to 2 hours depending on traffic).  The doctor offered to arrange for an ambulance to take me to the hospital, and suggested that her father go with kat on the bus and meet me there for her appointment as well as to attend emergency so that I could see a Neurosurgeon as my back doesn't seem to be improving much.  He told us to expect me to be admitted again, as apparently I wasn't looking to good.  Mind you I didn't feel great and I was meant to go to a friends funeral that day.

The alternative was that I call the hospital and arrange a telephone conference and discuss kat's case, then arrange to go to the spinal unit for myself.  (which I will do once her father has had his cardioversion done next Thursday as he has a serious heart condition dialated cardiomyopthay, complicated by an enlarged aorta and is currently in atrial fibrillation.  As he is my backup support for kat I need him to have his procedure done first before I return to hospital.  I know our family medical is pretty full on and hard for others to comprehend.  I also know I am risking serious spinal damage, but until kat is in the rehab unit she can't look after herself, and at least I can phone for help if needed, as well as make cups of tea and etc.  Her siblings can help us out at night and I have a respite worker who can come twice a week for cleaning and help/respite. I know I can't do much, and I have to spend a lot of time resting in bed as well, as I can't sit down for long, also I tire quickly when I walk around.  But I can still do little things to help her, just as kat in turn helps me if I need it. 

However back to kat,  the phone conference went well.  We were told that due to a problem with her collagen, her trachea has started to collapse.  He explained that if you took a straw and squeezed it flat sideways, no air can go through.  This is what happens when kat starts to cough and she goes blue because it is cutting off her air supply.  So this combined with gastric reflux and a post nasal driip as well as seasonal weather changes/allergies, viruses, etc, all help to trigger kat coughing, which once started causing the issue with her trachea to occur.  As for treatment, they can only try to suppress her cough at present with various medications, as well as more physiotherapy and sleeping with a wedge until she gets her new bed, and yet more tests from the gastrologist to see if they can suppress her reflux.  Mind you she is already on reflux medication.  On a positive it isn't causing problems with her sleeping yet, but it needs to be monitered carefully.  So this is now another clinic she will be attending on a regular basis. 

Hopefully with this information and combined with her next cardio appointment on Monday (kat goes in for her first download of data from the loop recorder which her father will have to take her too as I can't), will mean that the rehab unit will be able to support her soon. 

Today Kat was able to take about 6 steps with a rollator before having to sit down which was good to see.  She felt so positive that she wanted to go out shopping in her electric wheelchair with a couple of bottles of poweraid to help with her postural hypertension and get pampered at the beauty parlour (having her eye brows plucked) and have lunch down the street with her friends which was nice for her.  I used to be able to go out with her, but I can't go on a bus until my back mends.

As for me, I took a  small walk out the front of our house on the path through our front yard and smelt the roses that are blooming.  Kat came home 3 hours later very tired but elated at her freedom to shop and promptly went to bed for the rest of the afternoon and evening.  She is currently asleep after yet another coughing fit.  But proud of her achievements.

I too am tired again, so as I say, TOMORROW IS ANOTHER DAY, but I hope things improve soon.


Offline Brambledog

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #71 on: February 14, 2012, 04:19:09 PM »
Hi Kat and Vicki,

I've just sat and read through this thread, and it's the first time I've cried at someone's story. All of you are amazing. It's unbelievable what you have all gone through, and your positive attitude must be the biggest help to progress for the family.

I'm so pleased Kat has finally been able to walk just those few steps - she is one incredible young woman, if anyone can get the better of her limitations it will be Kat. I hope those few steps can lead to her one day having much more independence and mobility. She is an inspiration for anyone who knows about her journey. Next time I want to cry at my own problems I will think of Kat and all she has been through. And I will smile and wish I was half that strong.

Vicki, you have been such a support to Kat and your husband, they are lucky to have you. So cruel that you have had such tough problems to deal with yourself when all you want is to be able to care for your daughter and husband. I hope things improve soon and you can feel more normal again, and that your husband's situation improves as well.

I'm aware that anything I can express will sound trite with a story like this one. I really hope the next chapter is much happier for all of you, and will keep my fingers crossed for you all. Good luck.

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline captainruss

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Kat & Vicki,

I also must admit to crying like a 270 pound baby at your daughter's story and yours.  I thought I had reason to feel frustrated and outraged at the lack of progress with my 14 year old daughter's  (Kiani) ongoing problems.  She is here under Kianiblueangel if Kat every wants to chat with her.  She is going to send you a message and say hello.

A couple of ideas...not trying to stick my nose it, but I would like to help if possible.  I have a couple of ideas and please consider them and if I can help, let me know.

Obviously we are on the other side of the world, but my emotions greatly altered when I read how Kat was deprived of an electric wheelchair for six months.  I would suggest setting up a web site detailing Kat's brave story.  I am not sure about your country, but here in America I would try to set up a 501c3 (non profit status) which allows people to donate to assist with any of your future needs.  If I can assist with this or if you can get similar help in your country, you might consider it.  If Kat was here, I would set up the web site telling her story and I am pretty sure many people would want to help.  You deserve assistance. 

Second, here we have the Make a Wish Foundation.  I am going to look into it and if you agree of course, tell them of Kat's story.  I am not sure if she qualifies, if it applies to your country, or if you would agree.  I will do nothing until you let me know.  I just wonder if there is something special Kat would like to do with her newly found mobility.  Just a thought, but she deserves to enjoy anything fun possible.

I am overwhelmed by your story and the amount this young lady has suffered with.  Your country's medical system sounds very good, but have you researched other countries who have patients with similar conditions?  Just a thought, but I with this forum, I have found out that like most of my fellow countrymen, I am wrong at simply assuming our medical treatment is better than any other countries.  Any help that can be found for both of you.

I have had several back surgeries myself and I understand some of the pain you are suffering with.  Please keep us posted and let me know if I can help in any manner.

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline vl7007

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To Brams & Russ,

A big warm heartfelt thank you for your kind thoughts and words.  I haven't been on for a while as I have had so many things happening here.  I am slowly improving, it is taking longer than I anticipated, but apparently along with crushing a vertebra I also had 3 others move out of place which is putting additional stress on my spinal cord.  But after nearly 5 months with no back brace, and little intervention, due to delays in the hospital arranging for me to be sent to a specialized spinal unit for assessment, what can I say the damage is done.  So I am still using a gutter-frame rollator to get around most of the time.  And I have loss of function through my left leg/foot, which gets worse when tired.  But atleast I can still walk, admit very slowly.   As for caring for my daughter, I am lucky to have two other young adults/offspring who are helping me to the best of their abilities in between work and university studies.  Currently I am able to get 3 hours a week domestic help in to clean the house for us which is great but that will run out next month, so my eldest daughter has offered to help me until she goes to Canada later this year.

Next week Kat & I will be attending a rally for a national disability insurance scheme, which is a proposal here in Australia, for reform and additional financial support from all levels of government here.  It is a way of trying to get the govt. to look at the needs of the people here, and attempt to lose the gaps in a system where people currently are unable to access supports or funding due to their medical or disability not fitting the current criteria.   To create equality for the disabled.  I believe in order to change things, one has to look at all options and stand up and be counted.  Anyway enough about this.  I am here to update on Kat.

So here goes.  Walking is back off the agenda, another CT scan was done on her legs, the doc's decided that all the de-rotational surgeries haven't worked, she needs more now.  Also now the ligaments are too lax, so the patella's sublux no matter what position her legs are in now.  The ligaments in her feet have also become so lax that her ankles rest on the ground and her toes twist to the sides if she tries to stand up with help.  Now the ligaments in her neck, shoulders and jaw are also becoming too loose.  Kat is also having difficulty gripping things now, and tend to drop cups of drink on herself/bed, as well as having trouble cutting up food, and sometimes feeding herself.  (Although this only has happened a couple of time the feeding herself, when that happens I have to mash up her food as she also has trouble chewing due to issues with her tjm)

 Kat is no longer permitted to have massage unless it is by a physiotherapist who specializes in Elhers-Danlos / Marfans with Autonomic Nuropathy as they risk potentially dislocating her neck and rupturing blood vessels.  She still has the loop recorder in and the heart specialist is happy with her, however her trachea now collapses when she lays down in bed, or on her right side, as her heart and aorta now crushes it causing breathing issues.  About 3 weeks ago, the Paramedics had to come out when she was having a breathing crisis, they read her the riot act (saying that she could die if she refuses to go to hospital when this happens now)  She has free will, so they had to walk away, had she lost consciousness, then they could have taken her.  The Paramedics wanted to know why Kat wasn't already using VPAP to help her breathe.  (Her thoracic team want to try medications that make her loose consciousness, and inhalers first before going down that track)  That was when they worked out, sitting her up relieves the problem some what, so since then Kat has needed a wedge to sleep.  About a week later she worked out the same thing happens when she lays on her right side.   So tomorrow stage one of her customized bed is coming, we are getting a special bed with motorized elevation and trendelenburg functions built in along with some other little bits that will make it easier for her as her condition changes.

The Internist is currently testing her for Myasthenia Gravis as well and hasn't ruled out mitochondrial issues as contributing to Kat's condition.  We will find out at her next visit in 2 weeks time.  They are now having difficulty getting any rehab therapy for Kat as she is not showing any signs of improvement, (they are worried that the window of time for this may pass).  Intensive rehab therapy here is restricted mainly to stroke and brain injury patients, and spinal injury patients.  They haven't really come across anyone like Kat, we keep getting told she is unique, and interesting.  The other thing that has to happen at the next appointment is we have to do a health directive for Kat that will also include what happens when next she has breathing or heart issues, so that the paramedics know what to do, which doctors to notify, what hospital to take her to, etc.  As well as what will happen is she has to go on a respirator, or something goes wrong and she ends up on life support.  So I guess you can say lots have happened. 

Mind you in the midst of all this her father went back into AFib, went to hospital for Cardioversion, is now listed for Cardiac Ablation Treatment, he had to go interstate as his father needed spinal fusion, and his mother developed blood clots in her lungs with heart failure.  Kat's new Tilt-in-Space delux shower/toileting chair arrived but it didn't fit over the toilet, and the arm rest is fixed, which is fine when we use a hoist, but at the moment she is still wanting to do slide transfer, with her sister or brother helping, so not great when you have to use a monkey wrench to take it off.  Also the hole for the waste is too small, so they have the change the seat, and the footrests don't fold in so it is difficult to store in her room, with her electric wheelchair, and her queensized bed.  Let alone an electric hoist.  So that has gone back for modification.  Then I decided to lobby all the govt members, from our federal members, state members and local councillors about improving the system for disabled people in general.  It beats sitting/laying down feeling sorry for ones self.

Quick message for Russ, thanks for your suggestions, but the system is kind of different here.  I know one can fundraise for equipment but you have to apply for a special permit  through gaming and lotteries  (don't understand why) and then there are taxes, and audits.  Too much for me to work out at this stage.  As for make a wish,  here you have to be under 18 years old, and Kat is now 20.  So she doesn't qualify.   Thank you again for thinking about it though.  What I would like to do for her but don't know how to go about it, is I would love to contact her favourite actors and singer (Pink), and try to get them to write to her, or if they were coming to Australia, for her to meet them.  But as I said I don't know how to do that.  It isn't important. 

Any how it is 1:25am in the morning here, and I am quite tired.  So I'm off to bed

Know the within all of you is the ability to change the world.......it all starts with kindness......

And Tomorrow is Another Day......


kats mum vicki

Offline Brambledog

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Hi Vicky! Say hi to Kat as well for me... ;D

Thanks for the update, still can't get my head around how many different conditions Kat is dealing with, but she is certainly on a long and tough road for such a young woman. Sorry the walking has had to go on a back burner for now, I'll keep everything crossed that the next round of treatments can get her to a point where those few steps are a realistic beginning... The bathroom/toileting chair fiasco is the sort of thing that must drive you all up the wall...honestly, as if it's not hard enough already!

With regard to the plans for the paramedic calls, etc, I can't imagine having to even talk about making those kind of calls with your daughter. Whatever Kat wants, and whatever plans you both make, no one else has the right to judge them. I'll just hope they aren't needed.

Take care of yourself too, your spinal damage must very difficult to manage while caring for others. Hope your husband is ok dealing with his parents and their health problems in the midst of his own and his family's needs. Kat's and your story deserves to be known, Vicky, especially as you are doing so much to try and raise awareness in the midst of all this. Have you contacted the local tv stations? Kat's (and your whole family's) story is so unique that they might well do a piece, it could even get to the bigger stations and give your story a wider audience. It could give Kat something else to work on, and a public voice, if that's what she wants of course! Just an idea... (sorry if you've already done this, I've lost track of everything that's gone on with your amazing story!)

Just for Kat a moment: Kat, you are amazing. Everything you have done, everything you have gone through, everything you are fighting for, all adds up for anyone who hears your story. I'm so sorry you have had to deal with all this, but filled with admiration for your spirit and bravery. Here in the UK I'm hoping for you and your family, that things get easier instead of harder for a change! Take care Kat and keep smiling whenever you can, and know that you are in my thoughts xxx

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)