Author Topic: journey of bi-lateral derotational osteotomies of tibias for my daughter  (Read 44533 times)

Offline captainruss

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Hi Vicky & Kat!

I am not aware of your national disability scheme.  We have disability here, but you must apply multiple times, it takes 2 years to get approval, and the amount they provide is less than I can live on for any length of time.  The money is based on what we pay into the program thru our payroll taxes.  I have paid enough to get the maximum allowed, but it is less than a $1000 a month for me.  I would have to wait two years and it would not support my family as I have three children to put thru college.  My son is 16 and is already on his fourth semester of school.  My daughters start in August. 

The said part about our program is our retirement and disability program is it was originally set up as a "lock box".  A lock box was to hold the money so that it would be there when anyone retires.  Unfortunately, our politicians have spent the money on a multitude of programs.  The money I am paying in now is going to pay for those who are already retired.  When I retire, I can only hope there are enough people working and paying into the program to fund my retirement

Even more distressing is our government procures money when a married mate passes.  My father worked seven days a week the whole time I was growing up working in a paper mill.  He paid a great amount of money into the retirement program (social security) as did my mother.  My father died of cancer the year he retired at 65.  All of the money he paid in was confiscated by our government.  I believe if a couple stays married for 40 some years like my parents, they should enjoy the money the worked together to pay into the program.  Unfortunately, many of our retired couples are in financial bad positions when a mate passes away early. 

I hope you get disability insurance.  I am trying to purchase something for myself, but like my life insurance I must prove I am not disabled before I can enroll in the insurance. 

I understand you need permits/licenses to raise any sort of money.  I am not sure about the mood of your people, but I have worked with non profit groups in America and we raise money for kids in need all the time. 

I was not thinking about Kat being 20 years old.  I know it is a daunting procedure, but if you can find the time and put together a web site telling about Kats struggle with this condition and her brave fight, I am quite sure the people of this planet would help out with funding to make her more comfortable.  I am not sure, but I will check around to see if there is a Make a Wish sort of program for people over the age of 18.  I hope you don't mind, but if there is a program that will send you on a vacation, it would be very nice to take advantage of.

Make sure you take care of your back.  I was not informed...no KG for spinal patients.  I damaged my spine early when a light pole I was working on in 1989 broke.  They did an anterior and posterior spinal fusion with titanium rods and bolts to hold my spine apart.  The thing they did not tell me is anything that is damaged or repaired puts pressure on the vertebrae above or below the injury.  I thought I would never experience anything like a simultaneous front and back spinal fusion, but some of these knee surgeries and the resulting AF and HO are enough to make me reconsider.

I am hoping Kat is doing well.  I know you are really strong to keep working to take care of Kat after injuring your spine.  I am working with my kid's youth group, we are hoping to make an Exchange trip to Australia this Summer with the U.S. Navy Sea Cadet Program.  I hear really wonderful things about your country and its beauty!

Let us know how you are doing and keep us informed on your condition and Kat's progress.

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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Hi Brams & Russ again.

Imagine my surprise & delight when I checked my emails to see how many politicians have responded to my letter, that I actually had messages of hope from both of you.  It was wonderful to get the response.  I will try and address all of the things brought up by both of you. 

Brams, I did approach the local paper when Kat first had surgery, they were so lovely and did two front page articles on her, one about going forward and to inspire other final year students to keep trying as she wasn't going to let her condition stop her from achieving her goals (passing senior high was step one), and the other about walking for her graduation on two broken legs so soon after surgery.  We did also approach the local tv news stations,but we didn't want to do a sob story, kat wanted to bring awareness to her condition, when we thought she only had Atypical Marfans the doctors have only changed the diagnosis over past 12 months to include autonomic issues and Ehlers-danlos,  they must think this condition is impossible to have.  However I also sent tv stations/shows and newspapers a copy of the letter I sent to the parliamentarians to see whether they will look at the rally.  So far the response is promising.  One of our politicians wants to meet us there.  Which is good.  I would put up a copy of the letter, but I think that would breach the forum guidelines.  I am not certain whether I am actually breaching them say this.

Ironcially in the past 2 weeks we have watched segiments on other people with debilitating conditions.  One who's heart stops when her blood pressure drops, and she is waiting for a pacemaker but hasn't tried any alternative treatment and wants someone to cure her. (kat has the loop recorder for that, whilst the doctors work out whether a pacemaker will actually work or not).  The other one was a lady who sneezed and dislocated her neck in bed now sports a halo brace for the next 3 months, who was termed as the unluckiest woman in the world.  But with this lady she unfortunately turned her head to far when she had a violent sneeze which caused the issue.  With Kat she risks this every day as her ligaments in her neck have become too loose now and that is also now impacting on her arms and hands as she is losing the strength and grip and can't always control her movements. 

Yes the toilet/shower chair was frustrating especially when the technician was already aware it didn't fit over the toilet, and failed to do the modifications needed.  We had just gone through major renovations to double to size of the bathroom to allow for this new shower chair as it was going to be so much bigger than her current one, introducing two-way access into Kat's bedroom and incorporate the toilet in the bathroom, along with changing the layout of the laundry and widening the hallway and redoing the flooring in these areas and the dining room as the wall there was also moved to make the adjustments. We are fortunate as we live in govt. housing so they paid for most of modifications to be done, we just purchased and put in over head fans, wall light fixtures, air-conditioning and shelving so that we could easily store items in the bathroom and her bedroom and make her more comfortable.  It was just at the ending of the renovations (4 months long) when I slipped in the ensuite and broke my back  (we all used that for the 4 months whilst the renovations were happening), so then the ensuite needed renovating as well.

As for her custom bed, we starting approaching different organisations for assistance with funding 3 years ago when we were looking at something to make her more comfortable, it took that so long to find around $10,000.00 for it, but with the help of some wonderful organisations that actually understood her need.  Imagine our horror when we found out the now she needs the bed to help her breathe at night. (it is funny I always tell Kat that things happen when they are most needed to happen) so the bed is coming now she really needs it (as life saving), rather than when I was trying to get it for her to help with coping for pain.

Russ, We do have a disability pension here which is funded from taxes, it is also hard to qualify for, and here if you are still able to work more than 8 hours a week, you are now meant to.  Once you can work over 30 hours a week the funding is taken away.  For an adult with allowances it pays around $750.00 a fortnight, less for couples. For young adults under 21 living at home it is only $379.00 per fortnight, a little higher if you are not at home.  You are right is doesn't cover much, we live below the poverty line here.  But budgeting hard no cigarettes, no alcohol, and no gambling, no presents at xmas or birthdays,  we don't starve, and have electricity, phone/internet, and cable tv as it is a lot cheaper than going to the movies.  Everything just takes longer to get and you go without all other unessential luxuries.  I can manage without going to welfare for handouts, we are comfortable. 

Kat is getting the equipment when she really needs it, which is important, but I care about the thousands that don't qualify for assistance, and aren't able to access support services.  We may struggle but we are much better than many others out there.  Over here you hear stories about parents and carers killing their disabled offspring and themselves when the system is unable to support them. 

My rallying is to help the others who undergo these surgeries and can't access that necessary therapy/treatment/equipment post surgery, who can't access occupational therapy support to enable them to return to work, due to a lack of funding or not qualifying for support. It is to allow the identified disabled access to funding and control on supports providers and bring equality to the thousand that aren't currently getting support.  It is a huge project, being run all around our country looking at reforming the current system like superannuation and medicare.  Here in Australia, health care is free to all Australian Citizens, however if you are working and earn over I think it is $100,000. per annum then you must have private health insurance coverage.  If you are working they still encourage you to have it as you pay a special tax to cover the cost of health.  If you have private insurance it covers other things, that aren't under medicare unless you are on a health care card, or pension.  As a public patient you only have to pay for television by your bed.

As for college, Kat went for a couple of days in a manual wheelchair and then had to go for emergency ortho surgery, since then she has developed more complications and at present is unable to resume it as the course she wants to do (tourism) is to far away to access, and cost inhibitive via the internet.  We had an idea for creating a job that she could do from bed.  But she needs the certificate in Tourism to do it.  Also it is starting to get harder for her to use the keyboard now.

My other two offspring are having to fund their own education now.  My son is working part-time and will return to college later on this year, my other daughter is attending university part-time, our govt. have a loan scheme to help undergraduates pay their fees, and once qualified and earning over $45,000.00pa the loan is paid back at out of their salaries or through their taxes over a period of years.  For her books, etc, she gets a scholarship, and she works part-time as a phlebotomist at the local hospital.  They both live away from home, but sleep over 3 nights a week each to help out at present.

Our country abolished death taxes back in the 70's, and we don't pay into a program, our taxes are divided in ways the govt decide.  Part of that is disability.  We have a Superannuation Fund that all workers pay into, and that is meant to help when one retires, but the amount one receives at retirement is affected by gobal financial issues.  So many Australians here find themselves having to continue working into their 70's to live the lifestyle they want. However here the government get the money when someone dies if they fail to leave a beneficiary written into their policy.

As for the support groups, we have been successful in being helped by the cerebral palsy league here, as there is no other funding support groups here in Australia for this condition.  Funding here tends to go mainly to cancer patients and research, and there is young care here which is about supporting disabled in the community, to try and stop them from ending up in aged care nursing homes.  As there is limited supported accommodation here which is very hard to access.

I think it is wonderful that you are in a position to be able to help with different volunteer groups in supporting the young and disadvantaged in your country.  I used to help with volunteer groups when I was living in NT, dealing with refugees, homeless, and assisting with flights for families of children that had to undergo life saving medical treatment.  But that was 11 years ago, long time, way back and over 4,000km away from where we are today.
I hope that you are also able to have the opportunity to travel to Australia, with the exchange program, if you are near the Gold Coast, or Brisbane, perhaps we could catch up and you could meet my daughter.  Australia is lovely most of the time, and as populations go compared to your country we have a population of around 22,000,000  which when you consider the size of the country to yours being USA not much difference, we have alot of space.  However when you compare it to UK, our landmass is massive, and population smaller.

The people have just arrived to assemble Kats new fandangled bed.  Hope she likes it.

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

And Tomorrow is Another Day......

Thank you again guys,  you have made my day and put a smile on my face.

kats mum vicki

 




Offline captainruss

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Vicki,

Hey, we need to get Kat involved in some courses somehow.  I do have software called dragon.com which will work with a PC or a Mac.  It is voice recognition software and she can operate her computer totally by voice.  She can tell it to do anything she wants...type a letter...take a test, open WORD.  If I can help with that, let me know.

We have a learn smart program here where you take courses at home, than take a test at the college when you are ready and it automatically gives you college credit when you pass.  Here, we have programs to help those disabled to go to college and obtain an education.  In America, half our people pay absolutely NO federal income taxes and the poor rich people pay the majority.  I am not rich, but I do get work from rich people so they are in my corner.  You don't have any programs to help disabled get a college education?

Here, online courses are cheaper and our government pays young people to go to college. 

If you were taking a bath in a construction site and the repair company failed to put down non slip tape on the tub, then you have a liability case.  I am not sure how that works with it being a government house, as here our government has immunity.  If it was a contractor, they are supposed to act safely to prevent those kinds of accidents.

The thing that has helped me from going over the edge is getting my brain wrapped around education.  If we can figure out something for Kat. that would be great.  I can see her working in the tourist industry at home with a computer that has voice recognition software.

Let me know if I can help.  I know I am being a pest, so if I get too pushy, tell me to back off.  I just believe if Kat gets to do something she wants, they will allow her to earn money, keep her mind busy, and keep having hope.  We all must have hope to be productive.

I cannot even apply for disability.  I cannot support my kids on it.  I am probably going to start robbing banks!!  Take from rich...give to the medically mistreated!! 

Keep up your spirits and tell Kat we are thinking about her.

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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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #78 on: September 12, 2012, 03:23:28 PM »
Hey everyone,

Quite a few months have pasted since I last posted, as usual life goes forward.  Some things improve others deteriorate, but all in all, things are somehow okay at present.  On the positive after yet another hospital admission for my back undergoing more tests with Neurosurgeons & discussing options.  I have decided that whilst I can still walk I will not undergo any spinal surgery (mainly because I need to care for my daughter).  Mind you I can now walk without a rollator & am able to drive a car short distances, as well as care for Kat most of the time.  Though I am still taking some pain medication at the end of day before I go to bed as well as using wheat bags on my back at night.  I still need help with Kat sometimes for transfers as I get too sore by the end of the day.  But I am definitely better than I was.  Unfortunately about a month ago both kat's father & I caught different variants of the flu, with John it caused his heart to go into Afib, which required multiple attempts at cardioversion.  Next month he will undergo a Cardiac Ablation to try and stabilize his condition.  My flu/virus caused my glands to swell up so that I looked like I had the mumps for 3 weeks, which was very frustrating.

As for Kat, those few steps she was able to take back in April are long gone along with hips dislocating more frequently she has developed more laxity and less control over her legs.  It is now more difficult for her to control movement in her legs, if she tries to lift them doing her exercises in bed she can't stop them going up.  Now she can bring her legs up to her head infront of her body, dislocate her hips & knees twist her lower her legs then lower them down behind her back & turn her feet around so that they are to the side on the bed behind her.  It doesn't look right, she scared the daylights out of me when she showed me.  I called the physio who said that she had to stop as she was risking staying in the position as her neck joints have now also become too loose & she could potentially paralyse herself. 

Things started going downhill about a week ago when she finally came down with the flu, she needed additional steroids to help keep her airways open.  Now her esophagus is also starting to collapse and affect her ability to swallow &  her speech is starting to be affected as well.  To top this off, winter is now over down under.  Humidity has started to rise & Kat is back on poweraid big time, due to autonomic issues flaring up again. 

Another thing that had to be dealt with was doing an Advanced Health Directive in case Kat becomes incapacitated & unable to tell us what she wants.  So the specialist is doing a letter that Kat will carry in her handbag instructing Paramedics what to do, where to take her & which doctors are to be notified in case of emergency, along with a copy to be put in her hospital charts. 

The Physiotherapists have reached a stage of no longer being able to help Kat, as everything they do seems to make her worse now. 

Also the referral for a trial of  intensive rehabilitation therapy  with the view of hopefully gaining some improvement or stability to Kat's joints as well as teach her some life skills to give her some independence & introduce Speech Therapy again to look at her eating, drinking, & speaking has been refused by the Hospital Heads, originally due to where we live being the wrong area to access the service.  Then I wrote to the Health Minister requesting a review of the request to which I was informed that the reason for refusal were actually on the grounds of there not being appropriate medical/allied health expertise for her condition here.  Her doctor has offered to admit Kat into hospital with the view of having some therapy, though not as intensive as they wanted, the alternative is to consider going overseas treatment.  There is a clinic for it in the State of NSW, however they don't currently have rehab options available.   However for now we have to wait for the formal reply in writing so that we can take it to the next level (to federal government & our Prime Minister) & fight for a service to be made available in this country, as there isn't actually an inpatient rehab service for genetic connective tissue disorders in Australia for Adults. 

Kat was also reviewed for disability support & was informed that her condition was mainly a debilitating medical condition & that she only qualified for disability due to seizures & Spina Bifida (as her last scan of her hips & spine showed tethering & cysts with her spinal cord).  Which we found strange.  We are hoping that the National Disability Insurance Scheme will change the criteria for disability to include more debilitating conditions, similar to the criteria for the Disability Pension here. 

Anyhow no matter what happens.....Tommorrow is another day....... :)



Offline Brambledog

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #79 on: September 12, 2012, 10:36:53 PM »
Oh Vicky and Kat  :-\

I so hoped that the next chapter of your story would be brighter, but I suppose that with all your challenges that hope was slim.

Vicky, I'm so pleased that your back is improved and you are able to do so much more, I sensed how scared you were of being unable to care for your family and you must be relieved to know that whatever challenges come along, at least you are there making the decisions and taking so much of the strain on yourself. I hope your improvements continue and that spring finds you with more of a spring.... :)

Kat, the joint dislocations sound horrible and scary, but I know my fifteen-year-old daughter would be fascinated as well! Sorry if that sounds trivial, I don't mean to make fun of it... I'm devastated that your walking couldn't progress any further than those few steps, you must be so disappointed, but if anyone is resilient and brave then it's you, and I know you'll make the best of things. The business of te reab units is ridiculous and must be so frustrating - you and your mum must want to go and give the government decision-makers a good slap sometimes. They just have no idea of your kind of reality!! I hope you get some more positive news soon.

I do think of you both and wonder how you are all getting on. It's about time the world faced up to your situation and helped clear some of the obstacles instead of putting more in your way. I wish you both all the strength and luck in the world. The first you have, the second you deserve.

Much love and hugs, and keep up the  ;D when you can!!!

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 crankerchick

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #80 on: September 17, 2012, 02:37:25 PM »
I haven't come here in so long, and am so dismayed to read that you all just can't seem to catch a break. As always though, you present with such a positive and hopeful attitude and it is truly infectious for those of us reading your posts. Keep up the good fight and best wishes to you, Kat, and your family.
Mar '07 - plica excision
Oct '09 - femoral + tibial derotational osteotomy & TTT
Aug '10 - hardware removal
"You control your leg. Don't let it control you." -Smart trainer
"Get your a$$ in gear and go for it! Nothing will happen until you make it!" -Smart doctor

Offline lisa424

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #81 on: September 18, 2012, 07:10:29 AM »
I'm so sorry to hear that things have not gotten any better for Kat. The strength you both have really amazes me. I really am praying that you both get a little relief soon and things improve. I don't know how you do it but you really do have a great attitude.

Offline vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #82 on: January 06, 2013, 04:02:06 PM »
 :) Christmas & the New Year have passed.  Life goes forward & and another day goes by.  Changes to Kat's life are few, though she was finally about to see the gastro team & have a gastroscopy done to see whether they can resolve some of Kat's pain issues, & reduce the risk of aspiration due to reflux combined with tracheomalacia.  As for trial of rehab to improve mobility, still no luck there.  Trying to find a hospital in Australia, that is willing to do this seems to be an sticking issue.  But I will keep on pushing for Kat's right to treatment.

As for Kathryn, she has had a few issues with her condition over past few months, but keeps on smiling.  She has decided that as she is able (dependant of health & climate impacts), she will go out & live her life as best she can.  So over Christmas she went to the movies, shopping, etc.  mulitple times with many of her friends & family.  Though Christmas Day was spent mainly in bed for her, friends came by to visit.  Which was good. 

Ligament laxity definitely increases with her menstrual cycle, & seem to worsen every 3rd month.  Swallowing is also becoming a bigger problem now, causing her to cough & trigger her tracheomalacia.  As for her leg pain, this also worsens with her cycle and it has been suggested that we consider hospitalizing her when her hips dislocate as she turns in bed.  But Kat doesn't want to unless she is able to start the rehab once stable. 

As for her knees they are close to being back in the position they were prior the the original derotational osteotomies were done.  Partially due to the femur & tibias still in malalignment & partially due to increasing laxity of her joints.  Mind you she tried to kneel a couple of weeks prior to christmas, on her bed as she was trying to adjust her curtain.  (I was at the doctors & her sister was with her)  Something went wrong with her knees.  Both were very swollen & the fibula on the right leg seemed to stick out strangely.  Kat pushed it back in place.   But has had increased pain & swelling in it ever since.
I took her to the local doctor who suggested sending her back to the limb reconstruction team (who have already said that they can do no more surgery on her until her heart issues are resolved). 

However 6 months ago, QLD Health have had a restructure & as we live in a different area to the hospital that have this team, we are not allowed to attend it.  Our local hospital ortho team don't have this speciality.  So I have now written to the Premier of our state to see whether there is any leeway on the access to health services.  I am not holding my breath though. 

I am not having a rant.  Just keeping you abreast of the current situation here in Sunny Qld/Australia.  On a major positive, Kat has started to write a book about her life & how she overcomes obstacles & tries to improve supports for people with disabilities.  I am so proud of her for this.  Any how it is late, I am tired and as always....
Tomorrow is another day.....

Kats mum Vicki


Offline Brambledog

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #83 on: January 06, 2013, 04:26:06 PM »
Hi Vicki and Kat,

I am so frustrated for you both with the whole medical system, and I will keep my fingers crossed that your state premier realises how unique and horrible your situation is, and bends a few rules for you.... Good luck with all of that fight, and keep strong. You are right to demand decent treatment, and Kat deserves it.

I was really pleased to hear that Kat has been able to go out with her friends and have some fun. YAYYYY!!! Keep it up whenever you can Kat, I think you're amazing  :) The book is a brilliant idea and will be something uniquely positive that you are doing to ultimately help other people. That will be an incredible achievement! I look forward to reading it one day soon.

Look after each other as I know you do, and enjoy everything you can. You two are fab  8)

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 vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #84 on: February 13, 2013, 02:23:10 PM »

Well another 5 weeks have past.  Kat has had a small win, whereby another hospital geriatric rehabilitation unit has come forward & offered her an olive branch.  They will allow a trial of rehab with physiotherapy, occupational therapy & speech for a block of 6 sessions (3 hours, once a week for 6 weeks).  However they are pessimistic about the outcome.  This is due to her complex medical which will restrict that amount of therapy they can do with her.

 Since the last update the Regulatory Cardiologist has identified her as having an SVT so he is arranging for a EPS with the view of doing a Cardiac Ablation & or Pacemaker.  On top of this she is now having problems with her neck & dizziness & after CScan was referred urgently to a Vascular Surgeon.  Her appointment is in March, (which is amazing considering her father who has now developed an abdominal anerysm was refused an appointment & told to get his local doctor to moniter him last month). 

Kat has also found that she can move her legs into more positions.  But has been told not to do it as she risks causing irreparable damage to herself.  I am hoping that the rehab therapy helps.  I will put up a photo of her hyper-mobility soon.

Despite everything, Kat is now 21 years old & enjoying life.  She has really started going out more, wanting to visit friends and trying hard to go forward.  It is great to see her discovering life outside of the house that doesn't involve hospital.  If the therapy helps, she may be encouraged to return to studying for a while at a local TAFE/College.  I am hoping this is the case. 

Anyhow it is late, I am tired, and as usual "Tomorrow is another day". 
Take care all.

Kats mum vicki

Offline Brambledog

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #85 on: February 13, 2013, 03:12:18 PM »
Hi Vicki and Kat!

Good luck to all of you with this tremendous fight you are involved in, I have a lot of admiration for you all, and Kat especially. It is lovely to hear that she is getting out more and enjoying life despite her retractions, it is a marvellous attitude to have. You must be very proud  :)

Hope the next few weeks go well for everyone, and that Kat does indeed get back to studying locally, that would be a big step forward!

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 vl7007

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Well everyone, over a year has passed since I last posted.  I do apologise for the delay but so much has occurred during this time. Family members passing & major life changes in the immediate family restricted my time.  Therefore updates were definitely on the back burner for me.  Having said this Kat has also had some positive changes which I will fill you in on. 

After I last posted, we finally got a response from our  the therapy Kat was receiving at other hospital identified issues with Kats esophagus citing laxity problems causing issues with swallowing & speech issues due to laxity of the larynx & TMJ.  They felt it was part of Kats connective tissue disorder & suggested we mash all for her food, making it easier to swallow.  They also made a sign that sits by her at the table reminding her to eat & swallow as they also did a series of brain function tests on her & identified short term memory issues that she can be sitting down with food or a drink in front of her, but not connect the need to eat it.  When the laxity is more intense (seems to relate to menstrual cycle), she is reduced to drinking sustagen.   However they re-affirm Kat could only have one block of therapy as she didn't fit the paramaters for treatment & they didn't believe she would sustain any benefit from treatment.

By April, while I was interstate at a funeral. ( Kat had her boyfriend staying with her along with respite support) Kat started experiencing pain in her jaw which was increasing.  I told her boyfriend it was okay to increase the pain meds (endone) by 5mg twice a day till I got back.  But that if it didn't work to take her to hospital.  I arrived home in time for her to attend pre-op clinic for her EPS & noticed that her jaw pain was extreme.  I took her to the dentist who looked & stated it wasn't her teeth.  So I then proceeded to the pre-op clinic where anaesthetist sent her straight to emergency for pain relief.  Fentanyl injections, then as she was already listed for the procedure the following day, they admitted her under cardiac (but stated that they may not do the procedure).  By the following day she was having fentanyl injections every two hours along with increases in oxycontin & was having major difficulty swallowing, reducing her to thicken fluids. 

Then her period started & when she tried to sit up to transfer to a chair to toilet, both her wrists subluxed & were flipped backwards against her forearms.  So I called for the doctor who said, "lets bring in the limb reconstruction team as both her wrists are dislocated".  I turned to them & said no, just put them into splints first to see whether it is really necessary.  Then when the nurse went to help Kat to get onto a chair, when she stopped & said,she couldn't move Kat as her hips & shoulders are really lax & they risk dislocating them.  So Kat was reduced to bed pans for the next week.  Mind you she was still in extreme jaw pain & curled into fetal position most of the time with heat packs on her face.   Any time they needed tests that couldn't be done in the bed they had to use glide sheet & flat board transfers for around 10 days. 

During this admission the Cardiologist came to see Kat stating they still needed to do the test & would modify it to their best ability to deal with her condition.  However they could not sedate her due to her dymanic airway collapse issues & jaw issues.  They tried to achieve a result in the test over a six hour period, but to no avail.  That night a Cardiology Transplant Specialist came in to say that he assisted Kat's doctor & said unfortunately they could not ablate the fault or find the correct spot for the pacemaker however he would like to trial her on some heart failure medication that may help  (however it wasn't available in Australia).  It would have to be arranged through the pharmaceutial company.    This took another couple of weeks to obtain.  In the meantime, a multi-disciplinary medical team stepped in from almost every area of medicine to look at Kat.  Everyone was intrigued by her condition & most stated there was nothing further they could do.  We were then worried we might lose her.  As no-one seemed to have any answers for us.  Even the rheumatology-hypermobility specialist stated he had never seen anyone as extreme as Kat.  At this stage the discussion of peg feeding was brought up by doctors as Kat was having so many problems swallowing.  We were asked again to consider an advance care directive as they weren't certain what else they could do.

Once her period had ended, the extreme laxity throughout her body started to ease. The problems she was experiencing started to subside, Kat could start to swallow pureed foods & was able to transfer to a chair & sit again. It was around this time that we finally got a response from our state premier (in USA you would call them the governor).  Amazingly he sent us a letter stating that he understood Kat was a complex medical case, however she could attend the hospital of her choice & any clinic there-in.  That she was definitely able to go to RBWH, even though we lived in the wrong area.  So I took the letter to hospital for them to copy & place on her file.

 Once the doctors decided Kat was stable enough, they arranged for a transfer to GARU (geriatric & rehabilitation unit) where Kat started intensive therapy.  Over the following months they were able to improve her upper body strength, help her walk again (short distances), teach her some life skills ( some basic cooking skills both in a chair & standing), as well as work out what type of foods she could tolerate.   Kat was able to be discharged end of May.  By the middle of July we had permission to take Kat on a short holiday to finally celebrate her 21st birthday, 6 months late (she travelled on a train to Maryborough, QLD) & took her to the Mary Poppins Festival.  Kat had so much fun & loved her time spent with Mary Poppins.  At the end of the week she had to return to reality, multiple hospital appointments along with the ongoing outpatient sessions at GARU which continued until the end of November.  Her jaw was starting to become a problem again, so the Maxio-facial team  under instruction from a Chronic Pain Dental Specialist made an occlusal splint for her to wear combined with an increase to her pain relief. 

It took around 3 months before things  started to improve.  At her last check up with Maxio-facial (3 weeks ago) we were told due to her connective tissue disorder, there was nothing more they could do.  She was not a candidate for surgery, nor would she be suitable for stem cell therapy.  Kat would need to wait for technology to catch up to her.   However they will monitor her.  As for any dental work, it must be done within a major hospital with thoracic team on hand.

 Despite that feedback, for this first time in over two years Kat had a normal lung function test result.  The thoracic specialist was delighted with the results as they had improved dramatically,  so maybe things are starting to turn a corner.  As for her heart, the medication seems to be working.  She hasn't had an event in the past 6 months, & has only had 2 events since starting the medication almost a year ago.  With her joint laxity issues, Kat copes really well most of the time.  But definitely notices increased issues at certain times in her menstrual cycle.  It seems that every 3 to 6 months Kat has an extreme event where she can't do anything.  This includes self feeding &  major difficulty swallowing.  When it happens we go back to thickened fluids & puree food.  If she can't swallow anything over a 12 hour period or is unable to pass urine, then we have to go back to hospital.  So whilst we still don't have all the answers, she is getting some quality of life back.  Now Kat is planning her next holiday & is going to travel interstate with her boyfriend.  She has just obtained permission from the specialists to fly, & is now waiting for the airline approval.  Once back, she is going to start the push on seeing whether she can learn to drive a car........Kat is soaring forward.   Planning her future of living independently (with supports).  I am so proud of her.  She has evolved into an amazing person.  She keeps on trying.......despite what the doctors say......
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« Last Edit: March 27, 2014, 11:24:38 AM by vl7007 »

Offline Snowy

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Wow...such an incredible update...how much has changed! I'm so sorry for you, Kat and your family that you had to endure so much along the way, but I'm so excited for you that things are sounding better and more positive now. Kat is *so* amazing - it's impossible to imagine what it must be like to rally in the face of such huge physical challenges. Sending all my best wishes to her, and to you. There's no doubt that she is where she is right now because she's a strong, determined person, but she's also there because she has a strong, incredibly supportive mom.
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 #88 on: December 30, 2016, 04:20:58 AM »
Wow.  So much has happened in the past 18+ months.  As ususal life goes forward and we all have paths to follow.  I came back on to read my daughters journey, and see where we have grown from. 

Kat has had major changes in her life. Some painful decisions through multiple choices made.  Sometimes by her father and I after extensive reasearch and consultation with doctors and specialists.  But more often guided by Kathryn, and what or how she chooses to live her life.  Coming to terms with her debilitating condition, and working out how we can  turn it into a positive.  Has been a challenge that Kat and I undertook this year.

Looking at what she could do, and how to enable her a better more interactive lifestyle with the local community has been my challenge.  It started by making some minor changes around the house, and encouraging her to take part in various activities. So we got a thermomix, to enable Kat to help with cooking once a week.

Then we started creating a garden path around the house and yard to give her access to outside.  Then we put in some garden beds and started growing some fruit and vegetables.  Again encouraging Kat to take part in watering, and picking the food.  That she could then prepare using the thermomix.  Which was great.  Having a garden meant she started interacting with neigbours as they walked by.

Then I discussed with Kat about getting involve with the local community.   It started by inviting local, state and federal politicians to come and meet with Kat and I.  To talk about how society in general is evolving, but also its impact on creating physical isolation within major cities and the wider community through techology and outdated, inadequate  infrastructure.  Requiring not only upgrading , but redesigning to enable better community access for all.

This premise  has the power to change the lives of billions of people around the world and help create jobs for millions. Our lifestyle is changing due to this.   You can read a little bit about this by looking at  http://www.everyaustraliancounts.com.au/opinion/amazing-things-going-happen/

Now we have a university starting to work on the concept, and interest from around the world in creating and changing current facilities and systems.  It is really exciting.  Earlier this year Kathryn was awarded the Young Queenslander of the Year award by the Qld Youth Governor and Qld Youth Parliament, she was also named a finalist for the Australian Young People's Human Rights Medal.  Which meant we needed to travel interstate for the awards. 

So what has happened with Kat's health, not much has changed.  Still having issues with everything, including her skin and muslces now tear when the doctors try to suture, and take months to heal. So surgery is even more dangerous for her.  The doctors considered putting in a Portacath last February,  but concluded it was too risky. As they couldn't secure it.  They now have major issues with IV treatments, as her veins collapse often.  Hydration is a big problem, so we rely on repalyte multiple times  daily, and increase dosage according to the weather changes.  Kat also now relys on maximum amounts of metoclopramide medication daily , which we suppliment with ondansetron if necessary.  This seems to help with the migraines from dehydration.  Flying can cause issues with her airways, but we are working on solutions for this.  Other than this finding a purpose has helped with her mental health and wellbeing.

As for me, I developed problems with chronic pancretitis due to stress.  Had my gallbladder removed.  Broke my foot 9 weeks ago, which after having  a couple of Aclasta infusions, the bone hasn't healed at all.  As I am high risk to further breakages and balance issues, am now reduced to using a wheelchair. So am learning ways of supporting Kat as much as possible in the wheelchair.  Certain things I can't do now, so we are having to get her help with personal care.  As transfers are an issue for me.  Have also worked out the house isn't really set up for multuple people in wheelchairs.  So now we have to reconfigure the layout. 

Having said that, we managed to travel interstate with a support person, attend a couple of meetings.  Just have to work out how to continue achieving change whilst restricted for next few months.


Offline Brandon123

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Hi Vicki and Kat,

I have just briefly read this thread about your struggles over the years, and just wanted to say that I admire you both. Having in comparison only very very minor problems myself, and still find it difficult from time to time to keep my spirits and hope up, you guys have all my respect.

Let's hope for some improvements in your situation for 2017!

Brandon

 

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