The WAITING ROOM => Emotional/Spiritual help and encouragement => Topic started by: vl7007 on September 01, 2009, 12:32:22 PM

Title: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on September 01, 2009, 12:32:22 PM
Hi i am katheryn Lyons and i am having my bottom legs operated on in 12 days i am at the end and just wanted it all to stop I was at the breaking point of just grabbing an axe and chopping my legs off the pain was that much.. morphine wouldn't help or any normal painkillers not even take an edge off.. i am in my final year of school i am grade 12 and am focusing on graduating this yr in 2 months  I'm hoping to get in to creative arts and Law.. I have had leg pain since grade 8 i could walk and my legs were straight my legs have rapidly turned since December beginning this year. The top half of my legs above the knee has turned over 65 degrees left and the lower half of my legs have turned a rapid 85 degree inwards.. I cant sleep any more painkillers they do nothing any more because of the Marfans this has sped though since puberty last year.  I am not at the stage of depression but have been on that thin line i feel like i am the only with this pain but i know i am not .. but the bones just keep turning and all i want to do is cry.. i cant go to school any more because its too painful so i do it from home now... I used to be able to Figure skate ,run , skip, dance, climb trees, any thing and now i cant its depressing just thinking of what i used to be able to do and now just being stuck in a wheel chair or bed bound.. All i want to do is cry my Boyfriend is rather supportive but i am finding it hard to cope now i break down emotionally and i cant even stand for 2 minutes before my legs give in.. I feel like no one understands the pain and i found this site.. i still wasn't sure but I hope there is some one here who understands what i am going though... I'm only 17 i don't know why this happened but i guess that's life...
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on September 11, 2009, 08:37:38 PM
Hi Catherine,
I have just seen your post and hope that you see this message before you have your operation.  I felt so sad when I read about you, especially when you are so young you have been very brave and STRONG with how you have coped so far with all the pain and lack of mobility in your life.  I completely understand how you feel about all the things that you have lost.  Things you used to be able to do at times it does become unbearable to think that you may never do them again but YOU WILL improve and in time regain some of the life that you have so cruelly lost. I am really sorry that you are having to suffer all that pain.  It must be heartbreaking for you not to be able to go to school and to live the life that you should be living at your age.  Reading your post has made me feel guilty because many times I have felt really down about how my life has changed and been really sad about all the things that I miss and still can't do but to be as young as you and so brave and you are.  I know you must be feeling really scared as your operation is near.  Wondering what the outcome will be, will it improve your life and how much pain there will be but you will get through it I know you will.  I will be thinking of you and I will say a little prayer for you.  Hopefully  you will soon be turning a corner.  Would like to know how you got on when you feel able.
Stay strong as you have been, you will come through this and I know it seems like things will never get better, they will.  Will be thinking of you God Bless. x
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on September 15, 2009, 02:09:39 PM
Hi Catherine,
I have been thinking about you and your family a lot since the weekend. I think you may have had your surgery yesterday, if not then any time now, either way I wish you the very Best of Luck with your surgery.  I hope that your recovery goes smoothly without any major complications, (the Surgeons always scare you to death with telling you about all the things that can go wrong and it really worrys you but they have to do that I suppose to cover themselves it doesn't mean that they are going to happen.)  Hoping that this surgery puts you on the road to regaining your mobility and with time ease the pain that you have been suffering.  I know it is not going to be easy for you and that you will have a long period of rehab ahead of you but at least you know that something is now being done to try and help you and to rectify the problems rather than laying on your bed suffering with things getting worse with nothing being done ,this surgery does give you hope for the future.  Thoughts are with your Mum and family also, it is very difficult for them seeing someone they love go through so much but I know their love, strength and support will see you through. 

Sending Best Wishes for your recovery and healing and hoping that you will have a good outcome from the surgery.   
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on September 17, 2009, 02:27:19 PM
 :'( hey everyone, I'm posting an update on my daughter kat who had derotational surgery on both legs on monday 14th september.  She is doing as well as can be expected. but the doctors seems to think he can turn back the bones over a 4 day period, he is moving them up to 1 cm per day, and hopes to take the metal frames off next week and screw the rods in place then.  so hopefully she will be able to come home from hospital in about another 2 weeks.  this is day 3 post surgery, and she still can't sit up, in bed.  any messages of hope and encouragement at the moment will really help her.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on September 17, 2009, 02:46:42 PM
Glad the surgery went well and that things are progressing positively to the doctors. Please tell her to hang in there and try to stay positive. She doesn't look like her spirits are doing too well in that picture. i hope it's just the meds and sleep deprivation and not really that her spirits are down. She has people rooting for her to see brighter days, hpefully that helps lift her spirits a bit.

Hang in there and happy healing :-)

Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on September 18, 2009, 12:08:39 AM
thanks solsticeM for the kind words. :)   she really needs them right now.  mind you kat is startring to tell the nurses and doc's to back off when they come near, she has a teeshirt that states " my mood rings say BACK OFF NOW".  she feels like a pin cushion being attacked  like a cat with a mouse.  that they don't mean to hurt her but everything they do does.  you're right thelack of sleep is not helping the situation much, each night kat has spiked temps of around 104f/39.8c and the doc's can't work out why, but it means that the nurses spend most of the night sponging her and put fans around her to cool her down.   also her epidural is leaking, she every hour or so the nurses and the pain team come in to check it which means they either roll her over/ or try to sit her up, then her knees swell from the movement, and it takes another hours for the pain to die down. 

hopefully she will start smiling soon.

Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: SuzanneT on September 18, 2009, 02:44:14 AM
Hi Kat, my heart goes out to you.  You're so very brave.  I only wish you the best.  You will be in our prayers.  Kneegeeks loves you & you can always come here for advice & encouragement.   Take good care, Suzanne
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on September 18, 2009, 01:40:46 PM
Hi Kat, It was great to see the post from your Mum today saying that you have come through your operation without any extra major complications and that there is a lot of optimism about the outcome (although I'm sure at the moment you are feeling anything but optimistic) You are probably wondering how you are going to get through the time in hospital, what with the pain, the lack of sleep (from personal experience that can really get you down) but the time does pass and it really won't be long before you are back home and not being woken at 6a.m. with clattering trolleys, pills, washing etc.  It was nice to see your picture to be able to put a face to your name and I was actually surprised to see how good you looked after all that you had done and it only being day 3.  This time will pass, it is natural if you start to feel a bit depressed at this stage the anaesthetic quite apart from pain and lack of sleep can make this worse.  Just try to do what they ask of you however draining at times that can be, it will get you gome quicker!  Hang on to the positive news they have given you that they will be able to correct and alter the growth of your bones.  I understand everything must be very painful for you but try to think of this pain as a different pain, your surgery pain, the surgery that is going to eventually improve your quality of life.  You have now begun the journey of recovery, you are now over the hurdle of making the decision to have the surgery, which must have been difficult, the surgery has now been done,and the surgeons comments are VERY positive.  Well done, you are doing great, although you probably don't feel it!  You really are.  Take care,  Hoping that you continue to do well, don't worry though if you have days were you think and feel that you are going backwards, thats normal.  You have been very brave and strong  Kat I know that you will get there!
You will be in my thoughts.  Sending you Good Wishes for your recovery and that you continue to improve daily.   
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on September 25, 2009, 01:55:29 PM
 :-\Well everyone, alot has happened since I last posted for my daughter.  Kat has has temps ever since surgery on 13th sept. the doc's removed the epidural day 4 thinking that that was the cause to no avail. for a week post op they derotated the bones upto 1 cm per day, then they reoperated on the 21st sept with kat having a temp of 38.5c, where they tweeked the derotation further so they were satisfied.  then they released the nerves in her right leg I don't know whether this was done in the left one as well, but the right one was very swollen and bruised and now she has half casts on both legs.  due to her temps, they decided against another epidural, this time using IV combined with PCA, injections and oral pain relief.  4 days post-op 2nd surgery or day11 after first op, they finally decided to try transferring her to a comode so kat could have a shower and go to the toilet.  her feet turned purple, her blood pressure dropped further, and her pulse increase well above 110 which is where it normally sits since surgery.  She is still very pale, and they have run out of sites to draw blood from, so now they are considering a long line or picc.  the physio and ot are organising a mobile shower comode, patient transfer board and wheelchair where the sides are removable, so that as kat stabilizes better, she will be able to come home.  They think in another week or two, once the equipment arrives.  on the down side, her pain levels are still quite high, and the feeling in her right foots toes are half or less of the feeling of the left, and the sensations are reducing as the swelling goes down.  still it is early days, and it will be nice to eventually get kat home again. Thanks again to all for your kind words of encouragement.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on September 28, 2009, 01:06:40 PM
Sorry to hear that Kat had to undergo another operation but if it is helping her to have a better long term outcome then that is what you all have to focus on. I know that is easy to say and at the moment probably not much consolation to Kat who will just want it all to be over and to be back home.  Try not to worry too much about the temperatures.  I was the same throughtout most of my surgeries, they never knew why this was happening. Sometimes its just the bodys way of reacting to all that is going on with it.  I too had problems with them getting access to veins (most had packed up after months of attack in hospital!)  I know it sounds scary having a picc line, but honestly it didn't hurt having it put in and it was nice not having to worry about whether they would be able to get a vein and saves the poor bruised arm.  Again the low blood pressure when having to move after being immobile or laying down for a while is quite normal.  She will probably experience this on and off for a while particularly when she tries to move or do something that she hasn't done before.  A combination of pain and faintness will make the blood pressure drop. Also just lying in the bed and the medications can make your blood pressure low, that was my experience anyway.  The foot numbness is quite frightening but it does come back.  Sometimes the blocks they give for painkilling purposes can cause this as well as all the trauma that the leg has undergone it will eventually pass.  Keep wiggling those toes Kat, if you can!

It is good that the hospital are trying to get all the equipment necessary to make it possible for Kat to go home when they feel the time is right.  Getting the toileting situation sorted, commode and the aids etc. for use at home, knowing that these will be in place willl ease some of your worries and hopefully make it sooner that Kat will be able to come home.

Sending Kat very best wishes and hoping that it won't be too long before she is back home.  Hoping you, Kat's Mum are holding up O.k. I'm sure you are.  It must be very difficult for you seeing your daughter in so much pain and going through so much.  You will get through this together.  Best Wishes also to you and your family.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on March 05, 2010, 02:49:52 AM
Hey everyone.   8)

It has been a while since i have been on this site, so much has happened since last entry. Kats final school exams were done in her hospital bed, whilst on a lovely cocktail of  I.V. pain killers, suprisingly she did quite well passing every subject with no special consideration other than the exams were not done at school.  Kat finally got out of hospital just in time for her formal, we were prepared to have the limo take her from the hospital ward if necessary, 2 days later kat graduated from school where she got up and walked 3 steps to receive her certificates in a standing ovation from the entire assembly, the local paper did a front page article on her achievements and everyone including the principal cried.  The poor student who received his certificate after Kat had to wait for the Principal and staff control themselves, and the hall to quiten down, around 10 minutes later.

By December, it was apparent that all was not going quite to plan for kat,  the wounds still weren't healing, and her left foot had turned again, and the specialists thought that with hydro things might improve.  Unfortunately this wasn't the case, and by February, they were ready to realign the derotation in the left leg again.  This time the operation wasn't so bad, however they found that her ligaments in the ankle had deterorated and that further surgery to adjust these bones would not be benefical if this didn't work.  3 weeks post surgery, Kat is now having trouble sitting in her wheelchair, or anywhere for more than an hour, although she can now walk with crutches to the toilet once a day, (which is about 30 steps) that is a major improvement in mobility, but the hips are now an issue.  Quality of life issues with the hips are an issue that the doctors are now considering operating on both hips to realign them.  Her knees still turn in are 45 degrees each, and this is because they still need to operate on her femurs,  we will find out next visit whether they will combine the femurs with the hip operation at the same time, or whether it is too much at once. 

Kat has not been able to get off any of her pain meds, and we are trialling patches now.  The las operation, she had a reaction to Morphine, which gave her menegitis symptoms.  So this is no longer an option for her.  Seeing a counsellor has become a priority, however finding one who is prepared to take on her case has been difficult.  We are hoping to start back at hydrotherapy next week. 

On a positive, her friends have been supportive, and visit her every couple of weeks.  Kat has also started communicating with a couple of members from kneegeeks via msn which helps alot.  Education wise kat has returned part time to studies doing what we call TAFE and americans call College, one night a week, attempting to do a business administration course.  one class at a time.  So she is trying to keep as postivite as possible and really appreciates any messages support the members from kneegeeks give,  to keep her focused on the future, as she is determined to walk and resume her studies in acting  in the future. 

Catch you later vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on March 08, 2010, 02:20:27 AM
Wow I'm so glad you came and posted. I actually was thinking about this thread the other day and wondered how things were going. I'm so sorry things aren't going as planned, but happy to hear that Kat's spirits are up and that she is trying to get on with her life in spite of these trials.

Graduating to a standing ovation? Going to senior formal? How awesome and what a great feeling that must have been. Must have sucked to be the kid after her, but with a story like Kat's, who would complain?!

I really do hope things improve for Kat. I don't sign in to MSN too often, but my msn name is the same as my name on here. I would be more than happy to chat with Kat. I'm a bit older than her at 28, but I did have my tibia derotated, along with my femur too (although mine was not with external fixation). My journey has been nothing like hers, I wouldn't even try to compare, but us twisted sisters still have to stick together. I'm always there to offer words of encouragement or listen to a venting session!
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on March 14, 2010, 01:22:11 AM
i told kat about you. she will try, but at the moment her pain is getting the better of her.  kat is having another growth spurt at the moment.  everytime this happens now, her muscles go tight and the femurs and tibias resume twisting again.  this causes so much distress for her.  the physio suggested carefully massaging down the sides of her thighs but now the calves (this is too painful for kat) to see if this helps but to be careful incase kat develops blood blisters.  the oxycontin, endone, and gabepentin don't seem to be helping much.  the doctors didn't break her growth plates when they derotated her tibias and fibulas in september last year.  In feb this year they re-derotated only her left leg (as it was twisting again), and again didn't touch the growth plates.  so now kat is growing again.  last september she was 190cm, or 6ft 3in tall, but now she is up to her brothers nose and he was 6ft 11in last time they doctors checked his height back in january. physio thinks kat is closer to 6ft 6in now, i only come up to her shoulder, and i am 5ft 6in.  when we see the limb reconstruction team in 2 weeks, i will ask them whether it is plausible to break the growth plates when they look at her hip and femur realignment.  It is getting to the stage where i need to take kat to hospital for IV treatment for pain to give her a break from the intensity of it.  every time she tries to stand with her crutches her left leg cracks audiably and she gets more intense pain.  all the physio can recommend is to stay in bed, take it easy  and reduce her standing to transfers to commode or wheelchair, and only walk with crutches a couple of steps each day.  At least kat sees the pain team next week, so they can hopefully adjust her meds, or talk to the surgeon.  however having said all of this kat is still trying to remain positive about everything and is planning her future, and would like to be able one day to travel overseas again.  I took her to borneo and malaysia about 4 years ago to see the orangutans and probocus monkeys in the wild.  kat loved that and would like to return as well as go to England to visit friends, but knows that this is impossible until her leg issues are resolved.  catch you all later kats mum vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on March 16, 2010, 01:53:56 PM
Hello Vicki, so glad to hear from you.  Kat has been on my mind a lot since your last post and I have been wondering how things were going for her hoping that the operations had put her on the road to being able to walk again.  I had been scanning the posts just in case you had written and when I didn't see anything I just hoped that things were gradually beginning to improve for Kat and that she wouldn't have to undergo more operations in the near future. I happened to check the section a few days ago and saw your signature.  With a mixture of anticipation and apprehension I read your post.  What spirit, determination and bravery your daughter has.   To go through all of that and complete and be successful in her exams is truly inspirational.  Reading your account of Kat's determination to leave the Hospital to be able to receive her Certificate and her getting up and walking the three steps to be presented with it and the other pupils and staff cheering and clapping her must have been one of your happiest and proudest moments and justifiably there wasn't a dry eye in the building.  (The tears were trickling down my face as well when reading your account).  The memories of that wonderful day will stay with you forever and will sustain you and Kat through the very difficult and sometimes demoralizing days that you have experienced since then and in the future.
It was so, so, sad to then read of all the problems and pain that Kat was again going through.  Very sad to hear of the problems Kat now has with the hips as if she didn't have enough to contend with.  Everything seems to have a knock on effect, doesn't it the longer things go on.  The problems Kat is having with pain relief and all that entails, more hospital appointments, the thought of more operations in the near future.  It must seem never ending for you all.  It is hard enough trying to cope with trying to get one part of your body fixed without having the additional worries and pain regarding the hips.  On a little more positive note Kat has managed to be able to stand and do a few steps with her crutches and having that feeling of standing and walking (albeit a few steps, at the moment!) even though it is painfull, she has had a taste again of being able to get up and walk a little and I know that she won't want to let that go and that WILL fire her on through the sometimes dark and painful days.  Yes, it would be good for her if she could find a Counsellor to talk to after all the 'emotional and mental trauma' that she has gone through over a long period of time and to help her with the enormous 'loss' she is experiencing as she is so young not to mention the anger which I'm sure she must have to deal with.  Also it might be helpful for you to have someone like that to talk to as well.  It must be so hard for you at times to keep your head above water always trying to be strong and supportive for Kat when I'm sure at times you just want to go into a corner and cry. You really do need to offload sometimes.  With Kat's determination and courage and with the support of you and her family I know that Kat will eventually get to where she wants to be.
Kat will continue to be in my thoughts and prayers through the difficult times ahead.  Thankyou for finding the time to let us know how Kat is doing.  It would be good to know how things are going in the future.  I know your time will be taken up with Kat and all that is going on but when you can and when you feel able to it would good to know.  Until then will be thinking of you and Kat, remember to look after yourself as well.
Love Mia X
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on March 16, 2010, 04:53:26 PM
This sucks that she is twisting again and stuck in bed or a wheelchair :-(

Know that lots of people on here are rooting for the positive end to all of this. It may not be in sight just yet, but it's not too far out. And its so great that both of you are trying to spread awareness like you are, not only does it help others, but it also helps to give a sense of purpose and provide distraction. Hopefully things will calm down soon. Kneegeek prayers are definintely with you all!
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on April 06, 2010, 07:13:57 AM
 ;) hey everyone,

sorry i haven't gotten back sooner. to be honest i've watched everyone elses diaries and haven't been ready to add to this one till now.  kat and i discussed with the pain team the possiblity of reducing her pain relief so they agreed to losing 10mg of oxycondone per day but insisted that she increase her gabapentin by another 200mg per day.  the flow on of this means she is not as drowsy so she can now manage to walk to the toilet without her crutches twice a day.  but it is still too difficult for her to do more.  kat is noticing her right knee turning in now along with the left one when she weight bears.  this causes pain in her hips, knees and down her legs into the ankles and feet.  also her feet turn in again.

we saw the OS who says that this is mainly due to her ligiaments been so loose, and that with her hips we may have to wait until she finishes growing, before they operate.  however as her pain is an issue they have decided to do a MRI to look for an AVN in the hips as they feel this could be an issue.  I don't think so though, i think it is just her growing taller and the bones, muscles and ligaments further torsion.  but we will see what the MRI brings. 

other than this removing the stress of studying for her by withdrawing from college for the next 6 months seems to be making kat more relaxed which is positive. it has been lovely not to have to go to the hospital for appointments over the easter period.  having a week break has been like a holiday for both kat and i. 
but it is back to hydro tomorrow. 

will post more when we get results from MRI.

kats mum vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on April 06, 2010, 03:55:35 PM
Vicki, glad you posted! I was wondering how Kat has been doing. I know it sucks to have withrdaw from classes for a while, but if helps Kat be more comfortable and positive then it's a good thing.

Glad you were able to enjoy the easter break a bit and looking forward to hearing more when you have the MRI results.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on April 09, 2010, 02:58:47 PM
Hi Vicki,
Thanks for posting.  You and Kat have been in my thoughts a lot.  I was going to post just before Easter to wish you a Happy Easter but not sure of how things were didn't know how appropriate that would be and didn't want to bother you, so it was good to hear how Kat is doing.
Glad to hear that you managed to enjoy some moments over Easter.  Having a small break from hospitals and appointments and just being yourselves for a little while is a pleasure in itself. Not having to rush off for a hospital appointment gives you a chance to gather your strength again ready for the 'next round.'
It is good that removing and changing some of Kat's pain medication has enabled her to now be able to walk a couple of times to the toilet a day, unaided, though it s not as much as she obviously would want and I am sure is painful for her it is good for her psychologically. That she is able to do this gives her that bit of encouragement and keeps that focus that she will walk properly again, in spite of all the setbacks she is experiencing.
I am sorry that she now has hip and other problems to contend with. At times I'm sure it must seem like an insurmountable mountain to climb but you will get there.  As you say it will be difficult to sort everything out until Kat stops growing, but that day will come, hopefully in the not too distant future!  Although it must be disappointing for Kat having to postpone her College course for the time being taking away that  extra stress and pressure can only benefit Kat's well-being.
Hope the hydrotherapy session goes well and brings some relief for Kat.  Tell Kat to keep hanging on in there and just keep doing what she is doing. Her strength of character and determination has got her this far and will continue to do so until she reaches her goal of walking properly again.
Sending Best Wishes to you both, take care.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on April 29, 2010, 04:56:54 PM
Hi vicki just wondering how Kat is doing. I'm sure things are busy and hectic, but just wanted you and Kat to know we are thinking about you here and hope things are doing better.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 04, 2010, 03:37:27 AM
Thanks Crankerchick.  You are right it has been awhile.  But I have been keeping a watch on your blog you crack me up, you are so encouraging and positive even when it gets tough.  That you are now walking without the cane and up stairs is truely amazing especially as your surgery was just after Kats.  Although Kat did have more surgery on her left leg in Feb.

 Well now for the lastest update on the life of Kat.  Her hip pain is not going away, but Kat is determined that it is not going to stop her although she can't sit for long, about 1 hour max before she has to lay down.   Around 3 weeks ago Kat started having seizures, which I feel are due to the increase in the gabapentin med as this not only reduces nerves pain it is also used as an anti-epilitic drug in others.  Kat had epilespy when she was younger but out grew it by the time she was fourteen.  So to see her collasping and jerking, with her eyes rolling backwards, within a week of the increase after 4 years of no seizures, makes me suspect that the meds may be a factor.  However we have to wait until she sees a nurologist and has a EEG, before we can discuss reducing these meds. As her pain team don't want to reduce it.

The upshot of this meant that Kat had no hospital appointments for 2 weeks as she had no hydro as they can't allow her in the pool incase of seizure.  Whilst this delays her therapy on her legs she is sleeping better. the flow on effects are we have been able to reduce her oxycodine down to 20mg twice daily, and in the next week I am hopefully able to take another 10mg away. If I do this gradually she shouldn't have any major withdrawal problems.  With this reducion Kat is definately more alert and capable to move more freely.

Last week she stopped using the wheelchair comode to get around the house and I gave her one of her brothers adjustable canes to walk around.  This she managed with quite well.  Then last wednesday Kat had an appointment with the orthotics dept to have special insoles made to support her feet and help her walk more easily.  Kat felt so confident and in control that she was able to walk from the carpark into the hospital catch a lift to the 2nd floor and walk to the clinic rooms.  We had to go past the physio dept, and the reception staff stood and clapped, her in-hospital physio Matt came out with the biggest grin and her hydro team came out standing there shouting "no way".    Then Kat sat/layed down and rested for about 2 hours before she managed to walk back to the car.  The smile on her face said it all, plus her comment of "it feels good to be able to look down on people again", as she is 6'3", and taller than most.  When we got home she was in a bit of pain so she used the wheelchair for the rest of the day and the next. 

Unfortunately on friday Kat was feeling more able and decided she could clean and rearrange her bedroom without help.  Vaccuming and turning queen size latex mattress are a NO NO.  Kat hasn't been able to stand for the past 3 days, let alone walk.  So I guess she has learnt there are things she can't do yet.  Yesterday Kats best friend came to visit (she lives about  1 hour away which is an imporvement as 4 months ago she was in living in another country) with her boyfriend and they decided to take Kat out for some fun in the sun.  So Dillon kindly carried Kat at the park across the sand and gave her a swing. Then carried her back to her wheelchair.  Kat had such a good time without me in tow that they have planned to take her to the beach next week with a blow up mattress and take Kat out into the water for a swim.  the beach is about 1 hour further south of where we live. 

Kats goal for the next 6 months whilst her friend finishes high school, is to get off all the major pain relief, and try to be able to move around a bit better so that the 3 of them can spend a month driving around Australia, between our family and Sarahs there are people they can stay with almost everywhere, as Kat has over 30 aunts and uncles and 75 cousins across  the country, and Sarah has 14 aunts and uncles and 23 cousins all in different states, so they intend on visiting as many as they can.

We will see how things progress though as if Kat is still having seizures that may put a dampener on things a bit.   catch you later.

vicki kats mum
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on May 04, 2010, 07:09:27 PM
Hey vicki thanks for giving us an update!

It sounds like there have been some ups and downs for you all, but that things are going ok. I'm so proud of Kat being able to walk to the clinic rooms. And how awesome is that to have everyone cheering and clapping for her. That must have felt very rewarding for her.

I know how she feels wanting to do more and challenge herself and push the limit. Only by pushing past the limit do you find the new limit. Of course that means tiring yourself out or potentially hurting yourself more. But I understand that need. Hopefully things will improve for her over the next few days so she can be able to stand and walk again.

Her trip sounds really fun and I hope everything works out for her to do it. I hope the seizures are under control, or if not now, that they will be figured by that time so she can do the trip. Everyone needs some fun and a getaway. Fingers crossed and prayers sent!

Take care!
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on May 10, 2010, 01:40:15 PM
Hi Vicki,
Thanks for updating us on Kat's recovery.  Sorry to hear that there have been some new problems to worry about, I'm sure you are right that the high dosage of the medication probably caused Kat's seizures, it must have been very distressing but when they get the dosage adjusted I'm sure this will be sorted.  How uplifting it was to read about Kat getting out of the car and into the lift and WALKING (without aids) to her hospital appointment.  WOW what an achievement for her!  Great that the physios saw her (I can just imagine the look of amazement on their faces) and having them applaud her as she 'walked' by how good that must have felt.  (All this clapping and applause its becoming a habit, at the School as well!) It was very much deserved and being able to accomplish that must inspire her even more and importantly help her in gaining more confidence with her walking.  Its good that Kat has been able to enjoy some time with her friends, the time spent on the beach in the sun experiencing 'normal' things again and hopefully the forthcoming trip with her friends will help her to feel  that she is getting some of her life back.  It must give you a big lift as well seeing Kat get some enjoyment back into her life. It was nice to see the picture of Kat and her friends. 

Hope things continue to improve for Kat without too many extra complications and that she manages to enjoy more days out with her friends and family.  (Don't you forget to spend some time doing something enjoyable for yourself as well!)

Take care, sending you Best Wishes.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 12, 2010, 02:46:48 AM
Had an interesting day yesterday.  Kat had volunteered to be a test case for the final trial exams of up and coming Ortho's as this is a way of informing other specialists in the field about the complexities of marfans, and its links to rotational features and problems associated with hypermobility and connective tissue issues. . On the up side of having over 76 different opinions and inputs meant the the examiners were able to identify yet more problems. 

The upside? Or should I say down side of this, Aussie Dr.T came in midway through exam processess to recheck Kat's legs and decided that she needs further surgery on her left leg, as it is bowing more since she started walking.  Now he wants to take out the pin or shaft and locking bolts as it has bent and put in a plate to support the tibia better.  He also is concerned again about the right leg and her bilaterial hip pain and will discuss with us next week Kats options, and organise possible surgery dates.  However I feel the need to be convinced that it will be of benefit to her as she goes through so much pain each time they attempt to resolve this problem, and they admit that this is only slowing down the problems.  That her ligaments are all going kerput and that once this happens there isn't much else that can be done.

Ironically in the past 2 days, kat has  having more trouble standing straight when walking and her whole body curves to the side to try and keep her balance.   So back to no walking again untill we see him next week I guess.    I will give you an update after we see Dr.T next.  But have to go now we are late to yet another appointment, this time with the local doc.  Also have reduced the gabapentin by one tablet  a day, and the seizures seem to have stopped however early days, and we haven't seen the Neuro Specialist yet.  Her EEG is next week, then she sees them.  Catch you later
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 12, 2010, 02:09:16 PM
Can things get any worse.  Just got off the phone from Kat's physiotherapist who wanted to know how everything was going at present.  I mentioned the suprise visit by Dr.T yesterday, to which the physio immediately got on the computer to look up kats MRI results.  Now I know there is a lot more to the story about next weeks appointment.  The MRI shows that her Sacro-illiac Joint is fusing, and that she is  developing bi-lateral hip joints  problems including bone cysts which are larger on her right side.  What this means we won't know until she sees the surgeon next week, but the physio requested that kat shouldn't overdo anything.  Not that it will happen now, assince waking up today kat is back to screaming everytime she tries to weightbare or move from the bed into her wheelchair or transfers into the car.  I haven't told her what the physio has said yet, as I don't know what the options are.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on May 12, 2010, 06:59:46 PM
:-( I hate signing in to see sad posts ::mad::

This is all a bit above my head but doesn't sound too good nonetheless. I'm really sad for Kat that she is in so much pain and I hope you all are at least able to get that under control.

As for what is to come, Vicki you have been so smart and educated through all of this so I know you were go over every option presented and you and Kat will make the best decision for her.

Even still I applaud and commend your's and kat's desire to help others and spread the word about rotational issues, even in the midst of all you all are going through. You are both soldiers!

Keeping you all in my prayers.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 13, 2010, 03:17:11 AM
:) Hey Crankerchick,
 Thanks for the support.  It's all a bit overwhelming at present, and as I said before, we have to wait and see what is suggested next week.  On a positive note I had a look at your shameless plug (Dr. Sanders), the youtube was great to see, and it was also good to be able to put a face to your name. Latisse you are an amazing person as you help educate people and show them that there is light throughout the journey not just at the end. Keep up the good work.   Catch you later Vicki.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on May 13, 2010, 01:43:46 PM
Thank you for the kind words vicki and super glad you visited the page and the fan group. Fingers crossed and prayers sent for next week!
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: solstice M on May 13, 2010, 03:46:34 PM

Very, Very sad to read your last 2 posts on Kat. It must be more hard to take this time so soon after her walking into the hospital and there seeming a little light at the end of the tunnel.  The better times don't last long do they?  I really don't know what to say other than hoping that they can at least get the pain under control and that all the people involved in Kat's case agree on doing whatever is best for Kat's future.  I agree with Krankerchick that you are knowledgable and wise enough now and although some very difficult decisions lay ahead for you I know that you will make the best decision you can in the circumstances that will be in Kat's best interest.  Don't be rushed into things and listen to your gut instincts as well.

Will be thinking of you during these very difficult times.

Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 18, 2010, 03:25:44 PM
Well we went to see Dr.T here in sunny Queensland today to discuss options for kat.  He doesn't seem too worried about her hips at present, as there is nothing that needs his surgical expertise there yet.  The main concern is for her left tibia which has again moved out of alignment by around another 10 degrees since surgery in Feb. which may not seem like much, but that combined with very loose ligaments in both her knees and ankles are causing her lower leg to bow and cause an even greater vagus deformity which combined with the both knees and femours rotating as well is causing difficulty for kat to balance and walk.  Unfortunately the doc explained today, that this is the very last time they can attempt to correct this tibia, as these surgeries is only delaying the connective tissue problems, in kats presentation of marfans and that they are unable to correct her ligaments as technology is not up to kats needs yet.  Surgical intervention with ligaments is not very sucessful for people with marfans. Up shot of this is that kat will most likely continue to need a wheelchair.

We discussed the surgical options of pin removal and plate attachment verses pin and plate attachment, verses external fixation.  They will decide when in theatre which is the best option.  The other issue is that kat will have to keep off that leg completely until the bone has totally healed as in her case weightbearing is causing faster deterioration of the ligaments and further derotation of tibia.  They have listed kat as a category 1 which is the highest priority for surgical intervention here.  In Australia health care is free unless you wish to pay for private treatment.  Everyone is entitled to free specialist care here, the problem is there is often a delay in treatment, that is why they categorise treatment. Emergency is life threatening, must be done within 1-2 weeks.  Cat 1 is urgent and or life threating should be done within 1 month. Cat 2 is semi-urgent and should be done within 2-4 months. Cat 3 is 6-18months.   The doc wants kats surgery as quickly as possible, however due to the seizures she needs to see the neurologist and have an EEG done first which is booked in for next week.

 So hopefully this will be dealt with fairly quickly. The surgery in feb they listed as emergency and was done within 2 weeks, and the one last September was listed as cat 1 and done within 1 month.  The down side for kat is that she has a special friend she made via internet, who is coming over from Scotland next month to meet her and she will most likely be in hospital.  As her first 2 operations she was in hospital 4 weeks, the one in Feb kat was in hospital just over a week, so as they don't know exactly what is happening they can on guess and say around a week for this time.  We will just have to wait and see. 

Atleast tomorrow I see the Endocrinologist with her brother who also has marfans, with complicating issues, so i will bring up kats surgery, and mention the MRI, he may just be kind enough to look at the MRI and decide if he needs to see her or whether she would benefit by an assessment with Rheumetology.  Then I will get the appropriate referral and save some time about the hips.

The bonus from this was Kats father came in to see the doc's and turned to me saying he is so confused by this and doesn't understand why this is happening.  so I was able to explain things to him better.  The other positive is that this time Kat wanted to ask questions, she is finally wanting to take part in the decision making and understand her condition better.  Which shows me she is growing up fast.  I suppose that this means I can step back a bit, and support kat in her decisions, rather than making them for her.  As solstice M said Knowledge is the key.  But I still need strive to ensure I have done my best to ensure that I give  kat the best chance of still being able to walk again.

I will keep you informed of what happens next. 
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 19, 2010, 03:04:24 PM
well some things are happening faster than i imagined.  Today i took kris, kat's brother to the Endocrinologist, as he has osteoporosis, spondyloarthropathy (the doc is sitting on the fence about Ankylosing spondolitsis), platelet disfunction, bronchaectasis, marfans, amongst other weird and wonderful medical problems thanks to living with a mixed connective tissue disorder which require a team of 14 different specialists ranging from ortho, and respiritory/ caridology to maxofacial and haemotology to mention a few.  I think about the only clinics he doesn't attend are burns, and gyne (as he is not female). sorry that is a poor attempt at humor.
As his appointment was 2 hours away during peak hour, we left home early 6am, and John (the kids father) kindly took another day off work to come over (as we don't live together) to care for kat who was fast asleep to that I didn't need to drag her into hospital today with kris.  That was so appreciated as kat cries on the trip due to uneven road surfaces due to road work improvements,  which is something she expeiences on average 3 times a week normally.  so not having to travel today, meant she could rest a bit.  Anyway as i was saying kris saw his professor in Endocrinology, who is happy with everything and offer further testing through the gastro team to check for Chrons, which apparently also goes with this condition.  great nuh.  whilst i was at the hospital the Neurology dept, phoned to say that they could bring kat's EEG forward to tomorrow so that the results would be ready for the anaesthetic and pain team in pre-op clinic next week.  To help reduce the delay in kats surgery.  Then the community occupational therapist and community physiotherapist phoned up to see if kat need any further supports in the home and how she was coping with the lastest changes.  Also to see if we needed a hoist in the house yet or was she still coping with transfers in and out of bed.
So hopefully this is a good omen.  I am thinking about taking some footage of the procedure like crankerchick posted on facebook, but putting it here to help others understand what happens.  however this is something i need to discuss further with kat and the med team to see if they are comfortable with this first.  I feel that it would be good for other to have visual understanding. On this site we are so supportive of one and other, and our procedures may be different or similar depending on the case and when we or our family members are first diagnosed with these complicated conditions it is daunting and difficult to find as much info as possible.  I might be wrong here but I feel it might help ours.  hopefully someone out there can give me some advice as to whether this would be appropriate or not. 
Let me know. thanks vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on May 19, 2010, 03:33:54 PM
wow, i can't imagine dealing with what you deal with everyday vicki. you are a very strong woman and a great mom!

glad kat could be spared the painful trip to the hospital and glad things are being expedited to get her into surgery sooner.

of course i think a video would be great. even it helps just one person, it is worth it. it still amazes me how many doctors here don't even consider rotational deformities when examining someone with knee problems. any information out there that would help someone be more educated is a good thing.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 25, 2010, 03:07:40 PM
Kat had Preac which is pre admission clinic today where the ortho checks to make certain all the require med work is written up and arranges for any other clinic requirements, ie ECG, blood work, anesthetic clinic, and chronic pain clinic, as well as physio and dietician clinics prior to admission for surgery.  So whilst we were seeing intern, I requested a copy of kat's MRI on her hips so that I could take it to our GP to get refered to a Rhemuotologist if needed.  After reading the report I realised i misheard the physio over the phone, i though she said that the sacorilliac joint was fusing, and that kat had cysts forming in the hip joint.  What the report read was that kat has a focal deformity of right acetabular roof, with bilateral joint effusion (fluid in hip joint), and that she also has subcortical cystic changes on her iliac side of her inferior sacroiliac joints (bilateral).  Also that she has aT2 hyperintense cyst in her pelvis which might explain her stomach pain.   So I shall take this report to the GP to see if we need to address any of this prior to surgery.  tomorrow Kat has orthotic clinic to trial her new feet supports, and in June she will go to anesthetic clinic, however if they call prior to that appointment to bring kat in earlier for surgery on her leg, we are to mention that kat needs to attend both anesthetic and pain clinic, prior to operation, so that they have all the latest info on her.  On top of this i finally took a look at the letter that the ortho wrote for kat to be able to access local community support networks here, and in the letter the doctor stated that Kat will permanently require the use of a wheelchair for support as she has and will have limited mobility due to her connective tissue disorder and how it is impacting on her.  So I guess that really this operation is just to help reduce pain and try to realign the bone to make kat more comfortable as they admit they can't fix the whole problem.  If it gives kat hope then I have to accept it.  I guess i am just rambleling on here so I will close off now.  but it would be nice if someone knew what is meant by the issues in the hip as the ortho surgeons are only interested in what they can operate on and fix. 
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 28, 2010, 01:24:38 PM
Well kat got her foot supports they look like shortened foot splints they stop just below the top of the ankle and velcro over the foot and around the ankle to better support her.  problem with them is that they don't go high enough, and when she tries to stand in them it looks like the tibia slips to the side and over hangs the top of them at the back and inside of her leg and makes it even more painful for her.  so I guess it is back to the drawing board, as these definately don't help.  Kat was in more pain last night and it looked like her foot had slipped sidways to the outside of her leg and the ankle was juting out to the inside of the leg and was almost on the floor, I screamed and jumped when i saw it, and made her sit down immediately. This is happening bi-laterally at the moment but seems to look worse on the right.  I know that it is just the ligaments going in her ankle further loosening, but it looks very wrong, as her right ankle is going out to counter balance the bowing of her left leg so she can stand.  It definately doesn't look good, and i am concerned that they will also need to operate on the right leg again before too long. I wonder if fusing the ankle to the tibia would work in stablising the joint better.  any ideas anyone.  or has anyone else experienced this happening with this type of surgery, and hyperflexibility. Kat has become quite shaken by everything of late, and is having difficulty handling the changes her jonts loosen more and it becomes more painful for her.  She is loosing hope which worries me greatly, as she fears that her future goals may no longer be attainable.  So I took her to our local GP to get some moral support, and also asked about kats MRI and he could only suggest that we leave it all to the pain team to deal with, as it is out of his league.  So I decided to take control of the situation and decided that Kat and I needed some quality girl time, so off we went to the local shopping centre so that kat could have a pedicure, manicure and neck and shoulder massage, whilst I had a reflexology session, then we went to have yum cha at the asian restuarant.  We had such a good time and kat even smiled which was wonderful.  so I think kat needs to do this again prior to surgery, only next time I will arrange for her the have a pamper session with facial and back massage if she can handle lying on her stomach, if not then shoulder and neck massage it is.  I know i just need to keep her focused and occuppied with pleasent things/thoughts/ideas, to take her mind off worrying about the negative concepts of the forthcoming surgery.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on May 28, 2010, 03:41:20 PM
vicki, sorry i haven't posted here in a minute, just wasn't sure what to say. it sucks that her doctors aren't sure how to fix the whole problem and even more sucks that the foot supports don't seem to be right. this is a lot going on for you all right now and i know it seems like it's just one thing after another. but hang tough and just keep pushing through!

good call on the quality girl time. it's nice sometimes to take minute and just do something that allows you to forget about everything else going on. i've been thinking lately about how I can do that for myself. i just need a vacation from my leg! but i'm not sure how to accomplish that as you pretty much need your leg for anything that doesn't involve sitting! And even sitting can get to be uncomfortable sometimes.

i've never experienced ligament loosening or hypermobility issues and i'm sorry to say i can't be of much help in sharing any experience or advice. i just wish there was some better i can help than just saying hang in there. please remind kat that she is built to handle this fight and it's ok to have some time where you feel like giving up, but you can only feel like that for a minute then you have to pick your chin back up and get back on the ride and ride it out till the end. because there is an end and you all will get there eventually and be much better for it.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on May 31, 2010, 02:59:19 PM
hey latisse,

Thanks for the kind words again. Before i could even tell kat about your message of hope, she was taking back control of the situation.  Kat slept for almost two days and nights solidly only waking up for a couple of hours inbetween, I think it was from exhaustion and feeling overwhelmed by everything that was going on, I was quite worried and managed to get an appointment with another counsellor (for tomorrow) as her previous one had left the area the week before . Then yesterday she woke up hungry and seemed happier, more relaxed about everything, and said that she knows that the doctors are only doing their job and are trying their best for her.  I am so amazed by her strength and proud is an understatement.  I guess my biggest fear is that she will give up trying.  That is something i don't want to see happen.  As like you kat is a fighter.  Remember you are an inspriation to us.

Kats mum vicki

I've attached a pic of kat taken just as her knees were starting to rotate, she did this for a photo shoot as she was wanting to try modelling at the time.  Now she has given up that dream, and has decided to write about her hospital experience.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on June 08, 2010, 12:17:45 PM
 ???Well all my updates seem to be negative, I don't mean them to be, it is just that kat's legs and joints keep deteriorating.  Now kat is back in  both moon boots, to help give some stability to her ankles as they keep slipping sidways onto the ground when she tries to weighbare or walk.  Last night her unstable ankle joints caused her to fall badly into a wooden chest of drawers  whilst trying to transfer from her wheelchair commode to her bed.  So we will try moon boots, if it doesn't work then we will have to get a hoist to transfer kat.  I don't know what else to do, even the physio and ortho are at a loss, as kats joints are getting way too loose and she is an unsuitable canditate for any surgical intervention with her soft tissue.

   Any suggestions would be good at present.  On a positive, kat has decided to try wheelchair dancing, as a social outing, if she can manage to sit for long enough in the wheelchair.  I am looking at joining kat in the Sporting wheelies, which is a support group in Australia for people with physical disabilities.  I need to get kat focused into something, to encourage her to try and sit in the wheelchair instead of just laying down most of the time.  I know that it is extremely painful for her, and after an afternoon in the wheelchair she can't move in the bed for a couple of days without crying or screaming from the pain. 

Walking to the toilet is quickly becoming an impossible dream yet again for her.  The difference is that now the doctors have no suggestions in how they can help her further, other than the surgery planned to straighten her left leg.  which they may leave now as her ankles are getting too loose to stand.  Ironically kat still talks about considering further derotational surgery on her femurs, if the pain gets too much for her to tolerate.

However I am starting to question the validity of keeping her legs, if she can't walk or use them.  As her mother I need to know I am doing the right thing for her, I have tried to be well informed, and support my daughter with the decision making about any procedures and treatment, but now I am starting to doubt the benefits of the surgery.  Alright it gave kat some pain relief, (but she is still on opiate medication) the surgery also helped to straighten her tibias, (although they have to re-adjust through surgery again and again), It also enabled her to walk again after three operations, although only for short distances, and for a few weeks at a time, (before she would deteriorate again and require more surgery).

On the postitive Kat feels it all the surgery she has had was worth it, she acknowledges that it has allowed her to walk abit, although she would love to be able to climb a tree, or run again.  Derotational surgery for kat was only part of the big picture with her legs, as her hyperflexibility is now causing major issues with the various joints in both her legs.  So being able to walk again will always be a problem for her. 

I guess I am wondering if things would be better for her if she had artifical legs then the ligaments would no longer be an issue.  However, I may be wrong as she may need the ligaments in her hips to be able to walk.  These are also starting to have problems. I don't seem to have any answers, and it is getting harder for me to be postive for kat, as I can't tell her it is going to be alright.  Kat wants to walk on the beach again sooooooo much.

So if anyone has any suggestions on how I could improve her situation, I would surely appreciate it right about now. 

Kats mum Vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on June 08, 2010, 02:37:16 PM
Oh man vicki, not liking the tone of your post :-( you sound defeated. Come on now, pick it up! I can see where you are going though, with the idea that Kat might be better off without her legs. Has this been broached by the doctors at all? I know as a parent you just want to see your child being able to enjoy life, and without pain and you are doing the right thing by trying to consider all possibilities.

It's good that Kat still has the desire to do find things she is capable of doing, and still trying to push herself. That's great to hear.

As always, I don't have any medical answers, I wish I did. Just hope you can cheer up some and get some perspective so you can reclaim the positivity you had just a few posts ago.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on June 10, 2010, 02:19:07 PM
 :( It's been a couple of days since I last came on.  Kats moon boots needed adjustments, so we had to see the orthotics dept and have arch supports put in to help stop the ankles from slipping over.  On the down side, her knees are getting worse, and the ligaments that hold the patella in place and connect to tibia is loosening and is allowing the tibia to move more out of alignment when she has her leg down on the floor, or tries to weighbare.  This causes additional instability, to the degree that the physio looked at her legs today, and said that kat was too unstable to walk without a walking frame and even then the physio wasn't comfortable with it, and would prefer that kat didn't walk at all now.  The ortho specialist was paged and we were told that she has to go back to wearing knee braces as well as moon boots, however the knee braces need additional metal supports, which we have to wait for the ortho to prescribe. 

Kats surgery date has be allocated for the 12th July, when Dr.T will try once again the straighten her tibia.  This time he will reapply a taylor spatial frame and leave it in place so they can continue to do adjustments as necessary.  The physio has also gotten the okay from the ortho to request a custom pressure reducing cushion  for Kat's wheelchair, and they are looking at a new custom built wheelchair as well.  They are still debating on whether to organise a transfer hoist prior to surgery, or wait until they see what she is like post surgery. 

I also found some more information about Marfans, and found that sometimes the ortho will fuse the ankle to give more stability, however I couldn't find any additional ideas for the knees, once the ligaments deteriorate too far.  The orthotic and physio team didn't have any ideas there at present.  So now I am back to a possible option I don't feel so down about the situation.  Kat seems to be more understanding and content with her situation.  Therefore I too feel all is not lost. 

I am grateful for crankerchick and the person who sent me an email with positive suggestions.  I really appreciate the support.  I needed another prespective on the situation I guess at the time I wrote the previous update.  Emotional and physical tiredness doesn't help much, for the past few months I've averaged 4 hours sleep per night, as I need to do Kats med's at all hours and support both Kat and her brother. Having said this, I wouldn't change being a mother for the world.  I love my young adult offspring and would do anything for them to help them achive their full potential.  I even joked with the orthotists today about kat taking up skygliding post surgery, to which once they got over the shock of the idea, they both quiped that they too would like to do this and would be happy to accompany kat if she did skydive, or absail, or rockclimb, etc.  These are some of the activities that are available under the sporting wheelies program for wheelchair bound people.  Kat is still debating her options and would like to go to the snow and try snow skiing in a chair.  So maybe next year, she will do this after or during her road trip with her friends.

Anyway thats enough for now. 

Kats mum Vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on June 23, 2010, 02:12:11 PM
Well Kat perservered standing, walking and transferring as long as she could with wearing both moon boots even for transfers, but constant falling even when transfering from the bed to the wheelchair, or from the wheelchair to the toilet or car, means that now she needs to use a transfer board until we can afford a hoist for transfers.  Standing is completely out of the question, as kats legs buckle under her the moment she tries too.

 Her surgery is listed for the 12th of next month, but it won't fix this problem now.  They can only straighten the bowing.  Kat's pain from the back of her hips is also radiating down her legs, and it is becoming increasing more difficult for her to lift them and even moving her toes she is losing control of, as she seems to have difficulty in holding her toes downwards they continuely shake when she tries this. and kat can only wiggle the big to and the next one across not any others now. 

Tomorrow she will attend pain clinic, and after that we will see the othropedic team hopefully they will transfer her to another specialist that can deal with her hip pain, and sort out the transfer issues so it is not so difficult for her.  Having said that, kat is trying hard to make an effort and get out of bed every day this week and either visit someone, or go shopping, or go to the library even if it is only for an hour, which is an improvement for her emotional balance, as Kat is demonstrating that she wants to go forward, and not spend most of her life laying down in bed.  Although she is in such pain doing this I am so proud of her for making the effort.

 Any other suggestion of ways transfering would be good at the moment, as getting in and out of a car is a big problem for her.  Seeing her fall into the chair trying to slide across is hard for me, but I know she is trying her hardest. 

Will keep you up to date when i get more information from the doctors. 

Kats mum Vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: SR on June 23, 2010, 02:47:30 PM
I really wanted to post something deep and meaningful to try and make your day a little better but to be honest everything I thought about seemed a little weak under the circumstances.

I admire your and your daughters determintation. I admire the resolve and I really do believe that no matter what she will find some happiness in this whole process.

I read the thread from start to finish.

Good luck and hang in there!!!!
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on June 26, 2010, 02:17:12 AM
 :) Wow amazing/hectic past couple of days for kat.  Went and saw the pain team early Thursday morning , they acknowledged there was much more to the picture than just twisting bones, and now realize that kat needs a doctor to co-ordinate all the other doctors and specialists needed to support her as her condition is so complicated, he also felt she could benefit by talking with a psych as this was becoming over whelming for kat and she needed help to cope with everything as the meds were also making her anxious. 

Then we went to orthopedic dept, and they managed to get kat in with the ortho straight off the bat (even though she didn't actually have an appointment and we arrived at the busiest fracture clinic for the week).  The ortho was shocked to see how far kat had deteriorated with her ligaments over the past month, and now even her muscles are becoming overstretched and not retracting properly. 

So I asked whether her hormones were possibly affecting her, as this all started with puberty, and she seems to get worse each month, and this seems to link with her period.  We discussed the connections between hypermobility and contraceptives and pregnancy, then something seemed to click in the doctors brain and she went into meltdown, calling  physio, orthotics, occupational therapy, radiography and medical aids head of departments in to the clinic room to do a joint consult and discuss kats situation. 

Whilst waiting for them to come we discussed gynocology, cardiology, endocrinolgy, rhemuotolgy, respiritory, othomology, haemotology, and neurology, then she started calling them to discuss kat, and arrange in hospital consults when kat comes in for operation on 12th, wanting to know what tests would be needed to be done prior to coming to hospital for the 12th to help reduce her hospital stay. 

Then kat did a standing xray with multiple people holding her up, so they could have a closer look at her spine, and ortho decided that after the next operation, they will need more MRI's done to look at nerve compression, as some of her legs issues appear to be related to this now.

After this, the ortho occupanied kat to have both of her legs cast up from her the soles of her feet up to the top of her thighs, so that they could devise a brace that encompasses her entire leg to support her joints, kat will still be able to bend her knees and move her ankles up and down, but if necessary they will be able to lock the joints as well.  They asked kat what pattern color she would like them to be moulded in to which she picked fire engine red with bananas and monkeys all over them as she said its BANANAS what is happening now, and they didn't have one with crackers all over it. 

The ortho then organised for a transfer board to be sent to our house immediately (which should arrive by monday), and demanded the physio to get kat a standing/walking frame to take home so that she can lean on it with her forearms and still be able to stand or take a few steps once she has the braces on both legs. 

The operation which is to be on the 12th has to be changed now, as they realise now it is too late for them to put on a taylor spatial frame, as it won't help her anymore, so they will only replace the pin and apply a plate to the side, however the left leg will have to be casted again after this as her bones will then be in a different position.

Next we discussed post in hospital rehab, and the physio was told to organise a stay post surgery for kat with a rehab training clinic to help kat learn life skills in a wheelchair, so that she can become independant in the future as she still wants to be able to travel. 

By the end of the day kat was visably shaking and crying it was way too much for her to process in one day and she felt totally overwhelmed by the changes even though it is positive. I really felt for the people who had appointments at clinic though, as this doctor spent around 4 1/2 hours with kat, before she returned to start seeing the patients.  Who were actually booked in for the clinic.  We didn't leave the hospital until well after 5pm, and as that meant there was only one other doctor handling the clinic, it would be going way past closing, there were around 50 people waiting to see the two doctors this afternoon.

The next day kat had to go to the orthodontist to have her braces adjusted, he was amazed when he checked her teeth as they are moving so fast into place that she will only need her braces for about 8 months in total at this rate.  He also realised yesterday that her connective tissue disorder is also affecting the rate of movement in her teeth, making it much easier for adjustment, the down side is that means she will also need a retainer permanently afterwards as her teeth could potentially also move back out of shape when the braces come off.  He was worried that they will want to take off her braces for the next round of MRI's and said that if they need to do her head we have to contact him immediately so he can fit her in to take them off and put on new ones immediately afterward the MRIs.

So like I said a very complicated and busy couple of days, but finally something is clicking with the doctors, and they are starting to see the big picture, instead of just a small part of the puzzle, which has to be positive.  Kat has calmed down, and I took her to a mind, body, and soul convention after the orthodontist appointment, and look at alternative therapies, to see if she would like to relax a bit with a massage or some spiritual healing, etc.  All she saw that excited her was, the handmade chocolate display.  So we went into Brisbane via bus and went to her favorite chocolate shop, she also bought a DS game and had dinner before going back to the hospital to collect the car and go home.  Today she is meant to go to her friends 18th, but somehow I think she will not want to move as she is exhausted.  When she gets her braces/leg splint thingys, i will post a pic so you can see just how funky they are.

Kats mum Vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on June 26, 2010, 12:56:49 PM
Wow that was an event filled day. So glad to hear the doctors are starting to get on the same page and coordinate. That's great to hear. I'm sure it must be a lot to handle, and some not necessarily what one wants to hear, but still positive happenings for you all.

Glad to hear also that actions are being taken to improve her day to day quality as far as getting upright and moving around.

That's great that the ortho would put that kind of tme into kat's care. 4 1/2 hours?! That's awesome. Sucks for the people waiting though. But it says a lot about a doctor that would put that kind of time in.

Glad there is a good plan and more coordination happening now. Stay positive.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on July 06, 2010, 02:23:25 PM
Hey everyone,

Well there is less than a week before Kat's next big day.  The transfer board which looks like a stretched out boomarang is bright green and stands out out night not quite glowing but close.  Kat has managed to master it really quickly, and it is much better for her as she doesn't fall now when transferring into the car of off the bed, etc.  On the down side though her left leg is swelling from just below where the ortho cut the bone to derotate, upto and well past the knee now,  it makes the left leg look about twice the size of the right and the knee is puffy as well as the break site and the locking bolt site.  I don't see any redness and that leg is no hotter than then other, so I don't think it is infected, however the bolt definately is sticking out to the side alone with the top of the tibia, if is quite bent from the break upwards.  And feels like it is displaced, but I think it is just the swelling doing this.  Kat also winceds loudly when she tries to move her leg in any way now. So the pain is getting worse. 

Last Friday she had preop anaesethic clinic, and on our way to it we stopped at the newsagency, and trying to turn the wheelchair in a tight space past papers that were in the wrong spot, I bumped her better foot/leg (the right one) into a wooden stand, unfortunately, kat screamed loudly, and said that her foot jarred through to the back of her achilles heel, then she lost all sensation to her foot and ankle.  So I told the anaesethic doctor who sent her to emergency. 

As usual we were told that her case was too complex, and as it didn't look like she had broken her ankle, to leave it until she comes into to hospital for surgery, and mention it to the ortho team prior to the operation.  They then gave her a release to take to the anaesethic clinic, and sent her home.  It took 4 days for most of her sensations to come back, but her ankle is a bit more floppy now, she showed me and her foot wriggles like a rag doll.   So now both ankles as as loose as each other.  Great.(scarcastic overture).

Oh well I have discovered my daughter is definately becoming a fragile flower.  Nothing like the little tomboy that loved to shinny up palm trees to play with the aboriginal children that lived in the property behind us, and go looking for goannas and crocodiles in the NT when she was a wee babe (around 3 years old).  Its okay though as we still have those memories, and she still wants try bungee jumping. Although she knows that is now out of the question, she says nothing will stop her from living her life. which is all that I want to hear.  Don't worry crankerchick I am still positive, I just feel a little guilty for having pushed her foot into the wooden stand, although she did have her foot off the foot rest in front of it instead of on it, and she didn't tell me until after the accident happened,  and I did tell her that I could not see her foot from behind the wheelchair. Oh well it is over now.  Will let you all know what Dr. T ends up doing in surgery, after Monday. 

Keep smiling one and all. 

kats mum
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: Lottiefox on July 19, 2010, 08:34:08 PM
Hi Vicki

I know I haven't posted on this thread before but I've followed Kat's journey since she first posted back last year. I wondered how her surgery went last week? She is often in my thoughts, despite my lack of input directly to the posts on here. I admire her so much - she seems such a resourceful and determined young woman. I can only imagine how difficult the whole process has been for her, and for those around her who love her. I hope she retains her positivity and strength and I am sure she will achieve some of her goals - albeit in a slightly different way or via a different path.

Wishing Kat a speedy reovery from this last round of surgery and positive thoughts for the next stages.

With hugs from the UK

Lottie x :)
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: tez27 on July 21, 2010, 06:03:47 PM
Dear Vicki and Kat I like Lottie have been reading your posts for quite some time and I have always felt that I had nothing constructive to say to help your situation but decided I needed to say how much I admire both of you, Vicki the stregnth and comitment you are showing to your daughter is amazing and Kat what you have and are going through would prove too much for most people and the fact that you can stay positive throughout everything is also amazing.
Vicki I am a Mother as well as I only have a slight idea of how hard it must be to watch you child [or adult offspring] suffering I count my blessings every day that both my adult offspring are are in good health and are leading full lifes without any major problems.Your stregnth to go through what you do every day just proves what a wonderfull Mother you are.
I hope Kats surgery went alright and will check in soon to hear how it is all going.
Take care and god bless you both
Title: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on July 22, 2010, 01:58:52 PM
Hey everybody,

I didn't want to post anything until I saw how kat went with this lot of surgery.  This time, in sunny Queenlsand, Australia, our Dr.T, and his wonderful team removed the internal fixation pin and locking bolts, realigned her tibia and fibula again and put a T plate on the outside of her tibia to attempt to hold the bone in alignment again.  This time kat is to remain with her leg elevated so that there is no pressure on the bone until it has healed.  Her father bought kat a frog/alien hat to cheer her up in hospital, and we suggested due to the wonderful pain relief concoction she was on  (katamine and fentanyl) that she wear the hat and pull the sheet up to cover her mouth when the acute pain team come in to review her in the morning, as the med's are meant to make her hullicinate, and we thought they would have a laugh at kat morphing.  see pic below.

On the evening of the 5 day post op, kat was allowed to come home, so long as she could use her transfer board and mobilize with her wheelchair.  So home we came, and I must say, she had the biggest smile, although that may also be due to the increase in pain med's on discharge.  Whilst in hospital her endocrinolgist came in and said that she didn't feel there was enough medical evidence to prove that hormones impact on ligament laxity, so she wasn't much help, although she did discover that kat was vitamin D deficent, so now kat is on vitamin D tablets as well.

The neurologist has decided to do some tests on kat's autonomic system after noting a possible problem with kats blood pressure being low and possibly affected by posture, to see whether this is also impacting on her hypermobility, and if so what can be done.  Also the gyno came in and suggested that kat trial the pill to control her menstrual problems, and that we keep a details journal about the daily impact on kats body functions, ie: blood pressure, body temp, hydration levels, joint laxity, abilty to move, food intake, spot bleeding, pain, etc.  So that they can see if over the next couple of months whether this medication will impact on kats condition is a positive or negative way, then they can hopefully work out where to look next.

The orthotic team did a leg casting last month, on kats right leg, and so today, kat went for her first Kafo fitting.  Kafo stands for knee/ankle/foot orthotic, and looks like a modern day enclosed calipher.  see atached pic of kat trying it on.  It took two people holding kat up, one on either side along with crutches for her to manage to try and stand on her right leg, but she couldn't really manage it as she is too unstable even with the orthotic on.   Her orthotic is red with monkeys and bananas on it, and will look slightly different when finished as they need to make a front plate for the shin and adjust the sides and back abit yet.  Once the stitches and staples are out of her left leg and the swelling isn't too bad, they will cast her left leg and make another one so that she has them on both legs.  Then she will hopefully be able to stand and do some physiotherapy using a gutterarm rollator.  The rollator arrived yesterday, so kat is looking forward to trying it out. 

Another positive, was that finally a trial roho cushion came yesterday, so that kat can hopefully be more comfortable sitting in her wheelchair.  Sitting is also quite painful for her, due to problems in her hips now.  Here's hoping that this works, otherwise she will be still stuck in bed which is not good long term.  On the 2nd August,  kat will see the phsio team who will hopefully have an idea of when she can start hydro or rehab post surgery.  then on the 3rd, she will return to ortho to have a review and the stitches and staples removed.  fingers crossed it works/lasts a bit longer.  Anyhow thats where kat is at right now.  So I will check in again when we know more. 

Bye for now

kats mum vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on July 22, 2010, 09:23:43 PM
Vicki it's so great to hear from you! I've seen your few updates in other threads, but was waiting patiently for your full update here and I'm so glad to read it now. I'm super stoked that Kat seems to be coming along well following the surgery and is now at home and everything.

Prayers sent and fingers crossed that the roho cushion works and that the T plate holds the bone in alignment. It's nice to read that so many of the other doctors are also paying attention to see if there is anything they can do to help Kat.

I'm glad to read Kat's spirits are up and that she is looking forward to the physio. This is undoubtedly a long journey for you all but you brave it so well. Please tell Kat to keep pushing and stay positive. Give it her all ! As we say in sports, give it your all, leave it all on the field. No regrets otherwise.

Looking forward to more positive updates like this one :-)
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: Snowy on July 23, 2010, 03:34:04 AM
Hi Vicki,

I've been following your thread for a little while now, and I just wanted to add my voice to those wishing Kat the best possible recovery from her surgery. I can't believe how much your family has been through, and I have so much admiration for the courage and determination that both you and Kat have shown in the face of such overwhelming circumstances. I do hope that this surgery and the new orthotics will improve Kat's day-to-day life. I'll be thinking of you as you take your next steps on this long journey.

Take care,

Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on July 23, 2010, 01:45:55 PM
hey everyone,

Just wanted to say thanks for your wonderful suport and kind words of encouragement towards my daughter and me.  Kat really appreciates your messages of hope, and this site has been so invaluable to me as a place to communicate our feelings and concerns, as well as to be able to communicate other people who truely understand the hardship of fellow kneegeeks.  Without this site I truely believe I would go bonkers, reading multiple peoples problems and the responses they get from one another helps bring clarity to our own situation and allows me the privilage of realization that there are so many others out in this world doing it so much tougher than us.

 We are fortunate that we live in a country where by medical treatment is an entitlement for all people, although if one wishes to go private you have to pay then.   The only problem is the timeframe for treatment is sometimes lenghty.  But in truth it is still a good system, and does help those who need it.

I am also glad that through this site we have had the opportunity to communicate with some many twisted sisters, as this is also a difficult thing to find here in Australia, as there doesn't seem to be many here.  I enjoy sharing my daughters story with you all, and if you don't mind will continue to do so as this is a journey that we are taking together.  I hope one day to find another story similar so that either i can help them or they could in turn help us understand what is happening.  For this alone I wish to thank you all for taking the time to read our posts and respond in kind.

 I thought I would attach some pics of kats legs before the first lot of surgery, and post 2nd lot and at her graduation when she managed a few steps with crutches, and then the last one is prior to the latest lot of surgery. Catch you when we next have an update. 

kats mum  vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on August 03, 2010, 01:29:37 PM
Back again with another update,

Kat went to have her staples out today, and Dr.T was delighted with her new kafo, we found that in order to keep the ligaments in the back of her knee from bulging and collasping out the back of the orthotic and she required a heavy duty below knee gel suspension sleeve, this this works a bit like a soft knee brace, and is used with prosthesis for amputees.  This is the only thing we could find that would hold her ligaments in place and amazingly it also holds her patella in a much better alignment when used in conjunction with the kafo.

 Kat was so pleased at being able to stand on her right leg leaning on her gutter arm rollator, whilst both the physio and I helped support her on either side.  This time though she isn't feeling as confident as she did with the previous surgeries.  Kat doesn't think her leg can support her as her ligaments are really way to loose, and she feels them slipping even with all the orthotic hardware.  As for her left leg, that is still a no go zone, Dr.T wants her to wait another 6 weeks with it elevated prior to making a decision as to when she can resume any physio other than core muscle bed exercises. Also he will decide when we can get her left leg cast for a kafo at that next visit. 

On a postive note, we went to look at an inhospital talk on riding for the disabled and sporting wheelies, which are 2 sporting groups at are willing to support her when the doc's and physio's decide kat is ready to try some activities.  Kat is thinking about taking up horse riding as it is meant to help with the core muscles, and help work her upper limbs, and hips better than she can.  They suggested that she would be supported on the horse by foam cutouts, that would hold her in an upright postition, and she would be supported by a physiotherapist and an occupational therapist and the  horse handler who specializes in physical disabilities. 

I suggested to kat that this may be an option in the next 6 months, and that it is a great goal to aim for.  With sporting wheelies, kat is signed up to start wheelchair ballroom dancing, again when she is ready, as this was organised and a block of 6 sessions were paid for prior to the last round of surgery.  So for now, more rest in bed is on the cards, which goes with kats territory anyway, as she really does find it difficult to sit up all day, and is only managing it at the moment due to being on such a high level of pain meds.   Atleast we get a 4 week break from hospital, before kat has any other appointments, which is lovely.  the road traffic has been really bad lately, today it took almost 3 hours to travel 35 kilometres, which isn't very far really, and should only take us about 30 minutes when the traffic isn't heavy. 

kats mum vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on August 25, 2010, 03:04:45 PM
 :) Hey Everyone,

Just wanted to give an update on kat's situation.  Not much has happened since I last posted, but have definatedly noted that her pain levels and ability to move seems to flutuates with her monthly hormone cycle.  Also her hips hurt more later in the month rather than early, her knees tend to increase their swelling within a couple of days post period, and she tends to fatigue more mid cycle to late cycle when in the last week of her cycle she is unable to independantly transfer, as she has to hold her legs up and I pull her across the transfer board onto her wheelchair or bed/shower/in-out of car.  It is only a problem with the transfers in and out of the car at the moment, as I can't touch her legs without kat crying. Also her feet then to flop more to the sides as the month progresses and she has difficultly holding then straight and upright.  Kat also has difficulty controlling the position of her feet when she is sitting towards the end of the month. The swelling in both of her knees seems to increase during the day until they are around twice to three times the size they would normally be, and usually happens with her patella slipping sideways.  This is without moving from the bed, except to toilet or shower at present, as kat is becoming more fatigued, and having greater difficulty sleeping at night when her legs are swollen and even more painful.  Her kafo and standing is not happening at the moment until the Ortho sees her next, and the physio is limited to what ever she can handle. 

kat is still having problems with her feeling faint when she moves too much, and her neurologist as arranged a barage of cardiovasular tests next week, to work out whether this is part of her problem with fatigue, etc.  My goal for this week is to try and encourage kat to come with me to Riverfire, which is a festival held each year here in Brisbane, which starts with a syncronized firework/music display that covers an area of around 4 kilometres up our main river, which snakes around the city,  and the fireworks start and finish with an display of F1-11's doing a dump and burn through the firework display.  It is really beautiful and lasts for around 45 minutes.  For the past 4 years we have gone and watched it on the cliffs overlooking our city, with a support group called Starlight, which organizes escape/outings for children and teenagers with high medical/disability needs here in Australia.   However this year she doesn't want to go, she says that she would rather watch it in bed on television.  Ironically last year she went to the firework display the day before her first lot of ortho surgery, to celebrate with friends that she was going to get her legs fixed.

So any suggestions on how I achieve this, on how to encourage her to try would be greatly appreicated.  As I know part of her reluctance is her pain with sitting for extended periods.  But it would really be good to try.  I have attached pic's of last year at the fireworks when she went as a modern day vampire.

Catch you all later 
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on September 12, 2010, 04:25:38 AM
Hey everyone,

Well we managed to go to Riverfire again, it was really good to see kat enjoy herself.  The organizers even arranged for a disabled portaloo to be on site, however it wasn't really wheelchair friendly as you couldn't reach the flush if there was a wheel chair inside to portaloo.  Still it was better than no toilet. 

Kat had the cardiovasular studies done, and the result meant that yes she does have a problem with her autonomic system, which basically causes her to faint when she tries to stand, or move into an upright position.  However the Neurologist decided that it related more closer to a heart problem, and has referred kat to a Cardiac specialist who deals with regulatory function, and pacemakers, to see if he can resolve this issue.   It should help with her fatigue, and collasping, as well as kats tachycardia, and breathing irregularities.  So I guess it is a step in the right direction, and atleast it explains part of kats difficulty in being able to mobilize.  We just have to wait and see. 

Due to this development, we have been able to define the type of wheelchair Kat needs to a tilt and space style, so with letter in arm, I will get the Ortho team to review the new information and make arrangements for further modifications at her next visit on Tuesday.  As a negative this now means that hydro may not be a viable option at present, so rehab is going to take another step backwards.  Which is a shame, however I ensure that kat does what she can in bed, and have started building a garden outside and hope over the next few months to put in paving and plenty of high planters filled with roses (kats favorite), so that kat can wheel around outside and create an interest for her.  I am hoping that this will be a positive thing for her.

Despite everything kat goes through, she still strives to achieve things, even if it is only to be able to shower herself independently, although I do have to help her transfer in and out of  the shower, and help her dry and dress as she fatigues too much.  Her ligaments haven't seems to have gotten any worse lately which is good, but then she isn't moveing around much, and we haven't had the usual amount of hospital visits as none of her medical team have wanted to do anything until we have this autonomic problem sorted out. 

One big positive, is that you can barely notice the scars on kat's right leg now, however her left one looks like she has been attacked by a crocodile. Not much else to say, for now.  So I will post again, when Kat reaches another plateau, or we get some more understanding of her condition.

kats mum, vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on September 12, 2010, 05:45:26 AM
Hi Vicki, sorry I haven't posted much, been kind of caught up with my own advances with my now-straight-but-once-twisted-now-metal-free leg LOL. But I have been reading and following Kat's progress. Thanks for keeping us up on what is going on.

Glad to read that Kat's spirits are up and that she is still focused on achieving things on her own. It's so good to read that she is keeping the fighting spirit. And how awesome of you to make the garden for her to be able to navigate. I too hope it will be a positive thing for her. And super glad to read Kat enjoyed herself at Riverfire again. Every little bit counts!

Hope things with the cardiac specialist are deal with quickly so that she can be more mobile without fainting. It's like its one thing after another, but you guys keep pressing on. Way to go. I admire your spirit and grit. Looking forward to more positive news.
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on October 06, 2010, 03:05:51 AM
Hi everyone,

Thanks cranderchick for your kind support.  Kat and I have been busy with visiting young teenager relatives these past couple of weeks, it was great to see kat enjoy herself with her younger cousin, playing catch ball and willing to go to her sisters 21st birthday party in the park, (kat didn't want to go until she found out her cousin was flying up to go to it). This was chosen for the venue as alcohol is banned there, so the party would be more enjoyable for the younger ones there.  The theme was fanasty/alice in wonderland high tea, everyone came dressed up.  Kat went as the mad hatter ( Johnny Depp version ) and her cousin went as Alice.  Paul (kat's other cousin) went as a rotting zombie corspe, and kat's brother kris went as the grim reaper, they spent most of the time wheeling kat around the park scarring all the little children there who were also having parties.  Rochelle (my birthday daughter) went as a medival maiden, there were faries, princesses, knights, etc.  The rotunta (large garden arbour) that the tables and chairs were postioned under was wraped in rose flower fairy lights that were battery operated so that when it got darker, it would light up. 

But back to our normal life, and kat and I both have bronchitis at the moment, so we don't feel that great.  It also didn't help that the hospital had lost kats chart, so on her last visit the ortho doctor he asked how long since surgery, then said, okay start fully weightbearing.  He had forgotten that she didn't have a weightbearing plate in and that she needed the other kafo to be made before she is allowed to try standing again.  He then said that she only needed the wheelchair for her heart that her legs were healing well now.  When I asked him to look at her legs he commented that her left leg looked to be malaligned by around 15 degrees, and the right one around 10 degrees, but thats okay, come back for review in another 3 months.  He had forgotten that he had her left leg straighten to 2 degrees back in July, and that they realized back in May, that Kat's bones keep derotating.  However I think it is because of the femurs, as they haven't been done yet.   

When I got home, I phoned the Hospital Administrator and made a formal complaint about the hospital losing kats chart.  In the past they had only lost part of the chart, volume one or two or three, but to lose all of it meant that the doctors had no records to review, they couldn't even find her xrays on computer.  To say that I was disappointed was an understatment.  I informed the administrator that by not having access to her charts and records the hospital risks neglicence, as that as kat now needs to see a cardiologist for a pacemaker, that if they can't find the charts, they won't know what to do.  So the hospital is causing delays in kat's rehabiliation, which I am not happy about.  Amazingly they managed to find the entire chart within the day, volume 3 was still in the ortho ward from when Kat had her operation back in July, Volume 1 was in Endocrinology Department, and Volume 2 was misfiled in the Records Department.

 Then about a week later I realized that we were going to run out of some of Kat's medications which if I get them prescribed through the hospital they are alot cheaper for us, so I phoned the ortho clinic and spoke to to nurse, who managed to pull kats chart, and said sorry we made the wrong appointment date for kat, she is meant to be seen very 6 weeks, as her bones keep twisting, not in 3 months, can we come back in 2 weeks, and they will arrange for the scripts then, and also discuss kats future rehab options, and not to try weightbearing until she has been fitted for her kafo, and has been shown what to do by the PT. 

I don't blame the doctor for forgetting kat's case, as he sees so many patients, however, I do feel that the hospital needs to take more care to ensure the doctors have access to the files. It didn't help when the Neurologist suggested that I keep copies of all attendence notes, as she also only got access to part of kats chart and didn't know what was happening, so she had to request kats child chart from the childrens hospital to get a more clear picture.  It did help her by doing this as then she realized that different tests were needed, and that kat had an autonomic dysfunction issue as well.

Kat and I went to see the local doctor again on Tuesday about our bronchitis, when I asked him to document kats pain in her lower back and hip, and also to look at her legs.  He was shocked as he watche d her patella dislocate when kat straighten her left leg and start to dislocate on the right leg.  I said to him I don't think that the surgery is working, and he agreed, but said he had no idea what to do, and asked when do we go back to the ortho team again.  I explained the problems with the charts, so I wanted him to also keep records for us, he agreed to look at kats legs each week and document changes for us. 

Anyhow enough of moaning.  I know tomorrow is another day, and things can only improve.

Catch you later

kat's mum vicki

Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on November 24, 2010, 01:08:22 PM
 :-\Hey everyone,

I haven't writen for a while now, as I was waiting to see how whether kat would improve.  We have managed to confirm that at certain specific times of Kats monthly hormone cycle, kat has definate difficulities with her ligament laxity.  Also now she is finally getting an electric hoist for the bad days, and and electric wheelchair to enable her more independence in moving around freely.  Unfortunately this means that the bathroom needs to be modified again, along with her bedroom and laundry to allow access.

I also managed to find a community service that would assist with hydrotherapy so that kat can get so physiotherapy happening, as the hospital was too worried about occupational health and safety, so they weren't prepared to risk her safety in the pool, in case she lost conciousness, and drowned in the pool.  However without the hydro, kat can't improve, so it was a catch 22.

Had an interesting visit with her surgeon yesterday though, and was hoping that someone out there can clear up something for us.  The surgeon claimed that he compared her CTscan with one done prior to kats original surgery Sept, 2009, and noted that he had corrected her malalignment in the left leg by over 80 degrees in total, and the right tibia by over 60 degrees,  however her Q angle for the left leg was still at 47 degrees and the right tibia was around the 38 degree of angle, Also that her femurs were at 23 degrees for the right and 28 degrees for the left leg.  I was wondering do these angles sound okay to anyone one else. as both her knees are still malaligned when her legs are straight, and both knees still swell. 

Having stated this there is nothing the ortho surgeon can do anyway, until kat has her heart sorted out, which will hopefully be be achieved sometime next month.  Then we should find out about the pacemaker.

Not much else to add except we had a great 4 day break up at Noosa last week, and kat even when into the sea using a beach wheelchair  and got wet.  It was good to see a smile on her face even if it was only for a short spell.

Catch you all later.

Kats mum vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on January 04, 2011, 06:27:55 AM
Hey Everyone,

Well another year has started, here hoping it's better for everyone.  Kat and I have been going with the flow of the festive season, which will continue for the next couple of weeks here, whilst we have more visitors from interstate, and celebrate belated xmas/new year along with birthdays.  Kat's 19th is coming up quickly, and she has decided that she needs a new handbag, so I guess we will be going shopping in the next week to get one. 

Not much as progressed here on the medical side of things, hydrotherapy sizzled out when the  ortho physiotherapist wanted a Cardiologist on-site before they would let her into the pool. Yes you guessed it, we saw the regulartory specialist, he did an ecg on-site which was abnormal, and an ecg holster test at home for 24 hours.  This is after the Cardiac team decided to list Kat with the Cardiac Failure Group, so now Kat has yet another clinic to attend.  Now she has to see 3 different Cardiologists, one for regulartory system, one for aneurysms, and one to co-ordinate between them and the Cardiac Failure Group.  We don't know what the implications are yet other than a message on voice mail from the co-ordinator saying they look forward to meeting Kat, and are going to try and see if they can help her?  They have also put kat on to 4 sports drinks a day, to help with her electrolyte levels.  They have also arranged for another echocardiogram and some other studies in the next couple of months.  This also means kat can't go to rehab for life skills until her heart is dealt with now.

Kat got her other KAFO a week before xmas, but was not allowed to stand in case she collasped or lost consciousness.  So we didn't realize until we got home that it was rubbing  where the plate and screws are and caused burising.  I guess that means another appointment to orthotics yet.  It can wait, as she can't stand now without collasping within a minute.

The ortho team have referred her to the Scolosis Clinic, as they noticed that her sacral vertebrae is not fused properly, and with the liagment and muscle laxity that is occuring, it is causing excessive pain, and also bowel issues, so they are hoping that the scoliosis team can look at her spina bifida occutla.  Beside this Kat has also been referred to a Rheumatologist for additional support with her hip pain, which we are waiting for an appointment with. 

Not much else can happen now from an ortho point of view until Kat is deemed stable, so we won't be going to that clinic for another couple of months yet.  Anyhow, here hoping everything is going well for everyone out there. 

Catch you all later.

Kat's mum Vicki
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on January 08, 2011, 12:57:21 AM
Hey Again,

Well the Scoliosis Clinic had no answers. Other than making Kat feel bad about herself, the specialist wanted to know who was the doctor that butchered her legs, as he doesn't agree with derotational surgery, and that bones don't rotate like during puberty, who said they did, etc.  To which I reminded him of her last appointment with him over a year ago in, when Kat still attended his clinic at the Childrens Hosptial and he had called in other colleagues to look at her scars, and suggested that they send her upstairs to a patient who wanted to be taller and show them what can happen if things go wrong to talk the patient out of the surgery.  At the time we were horrified by his statment, as at the time the surgery looked good, and for a little while kat was able to walk again.  So we were glad that Kat was old enough to be transferred to the adults hospital.  However we didn't know he was the presenting specialist there as well.  He responded with his option on this type of treatment hasn't changed.  The upshot of this was that Kat was really upset by his comments, (as she didn't remember him from last year one of the benefits of her memory issues) she felt like he implied that she had imagined her leg problems.  Back to this visit, the specialist felt that her spinal deformities weren't responsible for her back pain, that it must be coming from the hips, and have suggested we see a hip specialist.  They also wanted to do a bone scan on her lower spine to rule out nerve impingement, gave kat the paperwork for it and said that they will review her if she decided to have the scan done.  Both Kat and I responded that if they don't think its the spine, then there is no point at this stage in doing yet more scans as she has had so many xrays, CT's, MRI's, in the past 2 years that we are certain she could set off a geiger counter now. He also suggested that she do some hydrotherapy to help with her muscles, and that he couldn't comment on her heart as that was out of his field completely, but we need to find another way of achieving hydro if the therapists at the hospital won't do it. Also that she was becoming a drug addicit, as she had been on the pain meds for over a year, to which I replied that we were weaning the pain killers down, and hope to be off the worst ones within the next 2 months.  However as her bones are twisting again, it is difficult,  Kat is trying different stratigies to cope with this constant pain and learning to suppress it.  Also she doesn't seem to have any problems with the way I am reducing the pain relief, as I have been doing it gradually, and it only gets increased when she has further surgeries. My understanding of Drug Addicits, is that they eventually need to increase the dosage to get the relief or high sensation. Kat isn't wanting it, and she says that she is only a little uncomfortable for a day or so after each reduction, until she adjusts to to pain. All of Kats other doctors are delighted with the progress that she has made withthe reduction ofpain relief and the pain team is amazed and impressed at how strong Kat is and what she has been able to deal with so far. so far.  Needless to say Kat felt it was a wasted visit, and I reminded her that atleast we know now that the pain shouldn't be from the back and that doctors aren't God although sometimes they may act like they either believe they are or behave like they are.  Also that whilst this doctor had his opinion, it was completely different from every other ortho she had seen, and he isn't a lower limb specialist, nor did he remember what her legs were like and what pain she was in prior to the initial surgery Sept, '09, or what happened to the left leg prior to each subsequent operation.  So we came home again, a bit defeated. Sorry about this moan, I know that doctors all have their own opinions, but somehow I feel that there is more to this.  As this  doctor always makes negative comments about the other doctors surgical skills, and he shouldn't say this to the patient.  Anyhow as Rhett says in  Gone with the Wind, "Tommorrow is another Day". 
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: crankerchick on January 08, 2011, 02:31:37 AM
Hi Vicki. Don't apologize for the moan, you are certainly entitled to a moan or two or 100 with all that you and Kat are going through. What a douchebag doctor to make Kat feel bad about herself! Just because he doesn't agree with derotation surgery! There are plenty of doctors and people around here that say the same thing. All I can say is my legs didn't even look twisted, yet they were, and the one that is now straight definitely doesn't hurt like before nor is it unstable like before so I like to think my doctor is dead on in his belief that twisted bones exist and can be responsible for knee pain and instability. If Kat's legs are even a little better now than before then you have to believe the derotation surgery was helpful for her. She has so many other things going on that for him to imply that her surgery wasn't helpful--that it was butchering her legs--well, heck, what a jackass indeed.

I say, use this guy for the expertise he can offer in the area that he specializes in, and as for her lower leg issues, as you said, he's not a lower limb specialist so his opinion on the matter means nothing!

You're right, tomorrow is another day. I hope you and Kat both will keep fighting to get her a better quality of life and not let doctors like this guy get you down!
Title: Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
Post by: vl7007 on January 08, 2011, 04:14:04 AM
Hey Crankerchick,

Thanks I really appreciate your comment.  I know that doctors don't always agree, and there are a lot out there who don't understand that everyone is different, and  the possibility of an individual having something unusual happening whilst logical is difficult for them to accept.   Unfortunately in life we come across people who just believe they know everything, that they are right and everyone else is wrong.  I know that it is truely his problem, not ours.  But it was great to see as usual we are not alone. 

by the way how are you going?  Haven't seen your posts lately, as I haven't been on site much, while we try to work out where we need to move to, so that we are closer to the hospital now.  Although it may take a while to find the right place that can fit all Kats equipment.  The hospital we go to is in an older part of the city, where most of the housing is around 100 years old and high-set as it is in a flood area, which is not great when one is in a wheelchair.  At the moment parts of Qld are having the worst floods on record. so I may be looking for a while yet.
Title: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on May 09, 2011, 02:19:56 PM
Hey everyone,

It has been a while since I last posted here.  So much has happened in the world, and with all the global environmental changes, it helped us realize that kats problems are nothing compared with what else is happening around the place.  However I thought I would log on and give a further update on kats progress.

Kat hit a stalemate with the hospital, as nothing could progress without the Cardiac Approval, all her clinics had basically come to a halt for the past few months.  So she started Tilt table therapy to help her with her postural hypo tension issues.  This seems to help a bit combined with her KAFO's,  compression stockings, prosthetic knee sleeves, a stomach binder and hydro lyte drinks throughout the day.

 After 4 months of therapy (where kat can only attend twice a month due to swelling, and fatigue), they were finally able to get kat up and able to walk about 10 metres with a person either side of her holding her up with a special brace with handles and parallel bars to lean on as she went forward.  We found out at this session that kat is now definately 6 foot 4 inches now, as she was as tall as her support person (he is this height).  The only problem was that it made both of her legs swell up so much so,  that even after resting in bed for 4 days she  still couldn't get her compression stockings, KAFO's, or prosthetic sleeves on as her legs were still too swollen.  It took about a week to reduce, and we noticed that even with resting in bed with her legs elevated, they still swell around 2 cm all over, during the night.

So now the Cardiac failure team and the spinal rehab unit have both slowed down her treatment, as they don't want to create further problems.  When she went in last Thursday, after about 20 minutes of treatment, kat started crying about the pain she was in out loud, so they lowered her down, and after seeing how her legs were swelling up through the braces and compressive garments, they elevated them on multiple pillows for an hour until kat could bear to move and get back into her wheelchair.  When I got her into the car, she peeled off the compression stockings and the prosthetic sleeves only to find the the prosthetic sleeve had made her skin tissue/tear.  I will tell the Cardiac failure team tomorrow when we see them prior to Orthopedics Clinic. 

I forgot to mention that the Cardiac team decided to arrange some of her physio through the spinal unit as kat doesn't seem to fit any ones criteria for treatment.  So in order to help support her, they enlisted the spinal rehab team to do some of the therapy as well.  The only down side with this is that we have to attend another hospital for the rehab therapy, but they stated kat can continue to go there for years if required.

Another thing the Cardiac team noticed was that they felt kat was presenting with additional symptoms of autonomic neuropathy rather than just an autonomic dysfunction.  So they have referred her to a General Physician/Internal Medicine, to see if they can work out what is happening, as everything the doctors try, seems to cause additional problems.

We also went to see the genetist with her brother a couple of weeks again, he feels that her condition warrants further investigating, agreeing that her presentation of Marfans is atypical, and that she has additional connective tissue issues happening here.  So he has invited kat and her brother (and the rest of the family) to be part of a research program that he is involved in where his colleagues (rheaumetologists, genetists and endocrinologists) will map their entire DNA in order to see interconnecting conditions.  Whilst it may not help fix kats problems, it can help the doctors in how they treat her condition in the future.  So we see it as positive.

So whilst it seems like not much has happened, kat is very positive at present, and happy in how her life is going forward although it is a slower process than others.  Her current goal is to be able to progress into hydrotherapy sessions again.  We will see, how long it takes.  Tomorrow she goes back to orthopedics for review of her legs, where they will see additional rotation in both of them again, and will say that there is nothing they can do until the Cardiac Team have resolved her heart issues.

My suprise for them is that I want them to do a letter about kat benefitting from an adjustable bed which can raise her legs when needed to reduce swelling, and have built in Trendlenburg tilt to allow her physiotherapy to be applied at home, so that she gets more regular therapy.  Then we could do therapy every day instead of twice a month.  That should help alleviate some of her symptoms and make her more comfortable.  I need a letter from both a treating specialist and the physiotherapists to hopefully get some funding support towards a custom made bed that allows for progessive changes. 

The Genetist also suggested that kat have a bone density scan done, as he is concerned about osteoporsis. As far as pain relief goes, kat has gotten down to 15 mg of oxycontin over 2 days now,  I can't reduce it any further than this as her bones are still moving/rotating slowly and the pain is too much for her when she has to get up and go to the hospital for therapy or appointments.  It takes around 1 1/2 - 2 hours to get to the hospital by public transport at present.

We haven't moved yet, so we will look at modifying the bathroom and laundry to make it more accessible for kat.  I had better get some sleep now as we have an early start to be at the hospital by 8 am tomorrow, Kat and I will be up around 5 am.  Hope everyone else is doing well, I am sooooo pleased for crankerchick and lysney, things are definately improving for you both. 

Catch you later

Kats mum   Vicki
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on May 29, 2011, 03:00:39 PM
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
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on June 26, 2011, 04:33:43 AM
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
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Snowy on June 28, 2011, 04:26:26 AM
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. :)
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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 ;)

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: LKnees 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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: mellzie22 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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: LKnees 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.
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: fire535 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. 
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Brambledog 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  ;)
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: captainruss on April 23, 2012, 06:24:09 PM
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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on April 26, 2012, 04:27:09 PM
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 all starts with kindness......

And Tomorrow is Another Day......

kats mum vicki
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Brambledog on April 26, 2012, 06:22:31 PM
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  ;)
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: captainruss on April 26, 2012, 08:01:49 PM
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 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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on April 27, 2012, 06:21:34 AM
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 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


Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: captainruss on April 27, 2012, 07:01:05 PM

Hey, we need to get Kat involved in some courses somehow.  I do have software called 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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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....... :)

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Brambledog 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  ;)
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: crankerchick 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.
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: LKnees 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.
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Brambledog 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  ;)

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Brambledog 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  ;)
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on March 18, 2014, 07:13:41 PM
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......
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Snowy on April 06, 2014, 08:12:58 AM
Wow...such an incredible 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.
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 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

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.

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Brandon123 on March 05, 2017, 10:10:55 AM
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!

Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on March 28, 2018, 03:40:38 AM
Hi everyone,  Just wanted to give an update.  So much has happened in the past year.  I met with royalty, spoke at a World Toilet Summit on Sanitation and Hygiene, worked with government regulators on changing the building codes to better support people with complex medical, disabilities, the elderly and parents of small children.  Set up a Charity called and developing a social enterprise.  Talked about toileting for people with mobility issues and am now changing the Human Rights Act.  I realised that the only thing limiting me was my belief in myself.  How my body functioned required some interesting strategies for going forward.  But without purpose, I was dying and giving up really wasn't an option.  So have a look at my webpage or or Facebook, see how despite pain and problems with my knees/legs/body I am going forward and empowering people globally.
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on May 19, 2018, 01:21:21 PM
Since the last update, so much has happened.   Kat was a baton bearer for the Queens Baton Relay as part of the Commonwealth Games in Australia.  She managed to propel herself up a hill only a couple of weeks post discharge from the cornary care unit of Royal Brisbane and Women Hospital after spending a week in there after contracting 3 different types of gastroenteritis  (one bactrial) which depleted her body of potassium and magesium.  Requiring 5 days of continuous IV potassium infusions.  Ironically she didn't contract any of these from toilets.  Kat was awarded Queenslands Emerging Leader for International Women's Day by Access Australia and met with the Duchess of Cornwell at the WOW (Women of the World) Conference  a couple of days later.  2 weeks ago she was honoured with the University of Queenslands Create Change - Qld Young Achiever of the Year award. Before flying down to Sydney to meet with the Disability Discrimination Commissioner for the Australian Human Rights Commission  to discuss amending the Discrimination Act and putting forward an amendment to the UN Declaration of People's Rights, to include the Right to Toilet with Dignity. 
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on December 12, 2018, 11:55:21 PM
Hi everyone.  Just wanted to bring you an update on how I have been going.  Well I recently gave my first TEDX talk. Have a look as I was wanting to inform the world that Toilets aren't accessible, and how we can improve sanitation, hygiene and safer for everyone.  Enabling them to come out of the shadows.  But more importantly I wanted everyone to know that they have to ability to create change in their own lives, only they can empower themselves and go forward.  So please look and let me know what you think
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: Brandon123 on December 13, 2018, 04:09:50 PM
Well done Kat, you're awesome!  :)
Title: Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
Post by: vl7007 on October 05, 2019, 03:37:52 AM
So much has happened since my last update, and I realised that in the past few updates I have told you of some of my successes, but I hadn't really explained how I got there.  I did start in one by talking about changing things around the house to encourage me to get out of bed.

However, I wanted to give everyone some emotional support and demonstrate that when we go on this site it is to find answers to questions. We are vulnerable, confused, often overwhelmed and in pain.  It is hard for us to see a positive future.  But I need to let you know that we all go forward.  Often we stop looking at the site once our health resolves or we come to terms with our outcomes. We don't feel as dependent on the search for answers.   

The reason why I occasionally put on an update is to demonstrate we do have a future, and it can be as wonderful as we want.  It is up to us as individuals to learn to deal with how we feel about ourselves and what we do to change our situation.  I might never walk again, but that is okay.  I have learnt that I can use my impairment to my advantage.  I use it to create change on my terms, it just happens to include creating a global impact.

Ten years ago, when I started this blog subject.  I was looking for answers, I was scared.  As a high school student in her final year of school about to undergo major surgery bi-laterally and not knowing the outcomes.  Who wouldn't be scared.  My problems escalated over the years, and many times my mother did the updates as I wasn't capable, or in the head space to deal with it.  As much as I wanted to share my story, I found it difficult to see past the pain and confusion.  My life evolved around hospital, doctors, therapy, and painkillers.  But nothing really seemed to help.

My focus was survival, as the doctors had sent me home to die multiple times over the past 10 years. It took the tough love of my mother to pull me out of this head-space, and change my focus from survival to living.  Telling me to get out of bed, and live my life.  Whilst some changes I mentioned in a previous post, like changing my physical environment around the home to give me more access and encourage social interaction. That was just the beginning.

To listen to mum and become anything I wanted was challenging. Back in 2016, I had to make some major decisions, and think about my goals. Mum showed me that my life was more than my physical impairment.  That I could still do things, I just had to work out how to do them.  I needed to be creative, so I told her I wanted to become the Face of Change, and create global impact as a Change Agent. 

I wanted to be a part of society and not live in the shadows, stuck in bed, just existing. I also wanted to make it easier for people with disabilities, the aged and complex medical to be part of society and improve sanitation outcomes. I decided my main focus would be around on inclusion and access for all people, I wanted to start with changing society's perception on what this means and how it was important.

So mum helped me break it down so that I could deal with the massive task, and believe me it is.
Starting with research in the local community, then expanding it across the world.  Looking at problems, solutions, and issues with standards, government and societies expectations around sanitation and ways of getting others to join my journey.

And over the past 3 years I have learnt that having something else to focus on, really helped me to gain better control over my health situation.  Not having the medical answers didn't change anything, being frustrated and angry or upset about it didn't help.  I took time for me to be accepting about my limitations, and accepting that not having the answers wasn't important.  It was more important to change my attitude and go forward.  I needed to have goals to live for and create my own future and start living. I had missed out on nearly 7 years of my life, away from society and I wanted to live again.  I just needed to work out how I could achieve my dreams.

So with my mum's help and a group of incredible people I create a charity called Accessibili-t Ltd, with a mission to create awareness, advocacy and improve outcomes around inclusion, access, diversity and sanitation.  I worked with government to improve building standards and am in discussions around health standards as well.  Then this year I created a corporate organisation called Accessibili-t Plus which would provide services and product solutions in regards to support inclusion, access and sanitation.  I also worked with a couple of universities around design outcomes and policy awareness.  Now I give talks and presentations around this and it has given me a whole new outlook on life. A bonus of this means at times I get to travel as I talk and evoke change in other communities.

I have had many highlights over the past couple of years some I have mentioned in previous posts.  This year I was selected as one of three Emerging Young Leaders as a Civil Society Delegate and Australian representative to attend a conference at the United Nations Headquarters in New York.  It was the 12th Conference of State Parties for the Rights of Persons with Disabilities.  It was just an honored to be selected, and whilst there I was given the opportunity to give an intervention (statement) at one of the forums on Capacity Building, about ways governments can economically improve outcomes within standards and allow greater inclusion.

Listening to the Head of World Health Organisation and Pan American Health acknowledge my advocacy and work in relation to improving sanitation as part of his round table discussion on Health two days later was incredible. 

But imagine my surprise to learn whilst I was in New York, that there are villages in Kenya that have not only watched my TEDX, but discussed ways of improving their communities.  Now they are working together to improve sanitation and access, and that I have a following of over 50000 people in Kenya...then in India, Nepal and ....I was totally lost for words. 

I realised that I was having a global impact, simply through talking and demonstrating how together, each of us create change every day.

Since returning home, in addition to catching up on everything, and working towards our next trip to the UN, (looking at both Geneva and New York next year) considering going to Brazil for the World Toilet Summit.  I have spent a lot of time in and out of hospital, with flu, hydration issues, etc.  Then mum has also had issues with her osteoporosis, as she hasn't responded to the infusions and now her bones are like someone who is 97 years old.  So our health issues haven't gone away.  But we try not to let this stop our dreams and goals.  Sometimes, things take a bit longer to achieve.  Having said that, with the help of others, I can see how I have truly achieved so much in the past 3 years...and it makes my head spin.

Last week I finally got some news from my geneticist.  The results have given a part diagnosis for my condition.  Apparently I was born with a chromosome micro-duplication on 16p.11.2 which explains a lot of my issues growing up.  The grey issue though is a defect with gene COL1A1 and this has the specialist confused as I am is so tall, and he says that I should be short stature.  He is questioning the results, as the blood work came back with osteogenesis imperfecta and a possible overlap with Ehlers-Danlos.  If this is the case it will also explain most of my other issues. 

So now both of my parents are being tested for these defects.  If mum comes back positive with the defective gene COL1A1, then they will better understand her osteoporosis. If either parent comes back with the chromosome micro-duplication,  it might also explain my brother's issues, our family platelet defect, and everything.  And whilst it doesn't change my treatment much, and the final answer is not conclusive yet, it does give us more answers.  And knowing that my results may also lead to improved health and education outcomes for future generations in my family and for others with this condition is important and exciting to me.

As currently I go to hospital every 4 weeks for IV fluid infusions to help keep me hydrated.  Having focus on other things and keeping busy, means I am not focusing on my pain as much.  So I have been able to reduce my medication dramatically, and I am able to focus so much better.  Having said that, I am possibly more opinionated, and make a lot more decisions in my life.  Which in turn means I am living my life better.  I now have access to better supports under a government disability support scheme, which provides supports in the home so that I can have more control and do more in the community.  Which is also positive. 

So again a lot has happened even in the past year, and I have learnt that I can leave a legacy.  In multiple ways.  I have purpose.  As do you.  So keep asking questions and looking for answers.  Acknowledge, and accept that life goes on, and you can and do have a future.  Only you can live it.

I would love to have some of you readers, come on to this blog and tell me what your dreams are.  Or how you are coping and how you are going forward.  As so many have looked at this blog.  I want to connect and know that this blog is helping others.  As it has truly helped me go forward.