journey of bi-lateral derotational osteotomies of tibias for my daughter

[captainruss]

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

[vl7007]

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

 

[captainruss]

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

[vl7007]

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.......

[Brambledog]

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  when you can!!!

Brams 

[crankerchick]

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.

[lisa424]

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.

[vl7007]

  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

[Brambledog]

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 

Brams 

[vl7007]

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

[Brambledog]

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