Last post Fri, May 09 2008 7:46 PM by Liesl. 14 replies.
Hi There
I am new to this site which I discovered while searching for support services. We are from Perth, Western Australia. Our darling 3 year old little girl has just had all the toes on her right foot amputated. I know that there are people so much worse off than us, but this is still a huge trauma for us at the moment.
I am really interested in getting in contact with people in a similar situation, parents of children, adults who had this happen to them as a child and how they have coped or managed with walking, running, etc.
We are still in the very early stages, as accident only happened 2 weeks ago and we are taking day by day. However, it would be nice to have some "look-in" on what we may expect.
Thanks for your time and have a great day!
Nina
So sorry to hear of your child's accident and amputations. I write in a general spiritual solidarity and sympathy with you, to say that I lived through a disability that left me paralyzed in one leg at infancy. I remember how my parents worried after me, that I might have it so much worse than other kids growing up into a well adjusted adult..
And yet I am here to testify today that a child can grow up into a happy, healthy and self-sufficient adult with a physical disability just as miraculously as without any limitations. It's really a matter of personal desire and determination. Everything else somehow falls into place as the years pass, and before you know it, your kid's grown up and ready to make the world her own oyster.
I think often of how my now deceased parents must worry after whether the three of us kids have made out okay depite their having left us just too early in our lives. Somehow, I feel convinced they are proud and content that we are who we are today, each and every one of us, and that their efforts and love invested in bringing us up were surely not in vain. If anything, we have flourished and thrived, and for that, we can only be ever so grateful to the Almighty, because for many in this world, you're right -- life suxx. Things could have been far more disappointing in life.
Rejoice. For you have a daughter who, instilled with love, courage, hope and an undying belief in miracles, can be everything she wants to be, and above all, she is your very own to love and behold for the rest of your days.
Best wishes,
Justin
Hi KRangel sorry to hear your tramatic news, as a perant I feel for you. Although I dont have anything similar I would like to say that children are very resiliant and no doubt your little girl will astound you with the things she will be able to do as she grows up. For now though welcome to the site, you may need to post this again if you dont get much responce as people pop into the site all the time but dont always look in here.
I am sure you will find support here in some way.
Mike
KRangel:I know that there are people so much worse off than us, but this is still a huge trauma for us at the moment.
I know that there are people so much worse off than us, but this is still a huge trauma for us at the moment.
Hi Nina,
Hey, it doesn't matter what other people have gone through or are going through! what matter is what you and your little girl are experiencing. Don't let anyone minimize that. I know it must be so, so hard for a parent to go through that kind of thing, especially with a younger child. I hope you find some people willing to talk; I bet you will. Good luck to you all and welcome to Disaboom!
Liesl
"I believe everything out of the common. The only thing to distrust is the normal."John Buchan
Hey Krangel, Welcome to Disaboom. I'm sorry to hear about your daughter's recent troubles. I am an adult below-the-knee amputee, so I can't help with the toes issues. I had a hard time losing my leg there for a while. All I can say is, time will pass and slowly you will feel better and more confident about things. This just happened, you all need some time to adjust. She will find her own way, with your help. Take care and hang in there.
Welcome to Disaboom, Nina! I hope you find the support here that you are looking for.
Hello Nina
Welcome to Disaboom-I hope you find the support you are seeking, I'm sure you will find it here. There is nothing your daughter shouldn't be able to do. Take Care and God Bless
Stay Strong
Vinny
It's an excellent sign for your daughter that she has such a strong advocate in YOU! It might not feel like much but your attitude is already making a huge difference in her recovery. Encourage her to develop a strong sense of self and provide a confident base to take out into the world and I think you'll all be surprised where she'll go! Thanks for joining us here and sharing your story...I hope you'll stick around and do more of the same!
Hi Nina - welcome to Disaboom. I think you'll find much camaradarie amongst the members here.
Nina - I am a bilateral TMA (transmet) so I have no toes on either foot. I have been bilateral for over 2 1/2 years and a TMA for just over 4 years total. I am a 56 year old male with no children so I can't address that aspect. However, I can provide some insight into the life of a TMA.
Unfortunately, finding a TMA on an amputee site is very difficult. In the several years I have been on amputee sites, I have only corresponded with one or two others who subsequently became BKs or AKs. Although we have many of the same issues and problems as other amps, we also have issues that are unique to our situation.
I lost the toes on my right in Feb/March 2004. I was back in shoes and walking the following June. Although my ability to walk was somewhat affected (balance is off - most of us don't realize how much our toes do to help us maintain balance etc.), I started walking regularly and walked approximately 2000 miles (3200 km) before the toes on my left foot were removed in October 2005. I have orthothes in each shoe each of which has a toe filler. I buy shoes off the rack but I have to modify the soles to flatten out my feet and reduce or prevent additional injury (I am also a type II diabetic). My orthothes are foam and extremely comfortable (they are very expensive Dr. Scholls so you just don't run down to the local pharmacy or shoe store and buy them off the rack). I can and have done pretty much what I want within the limits of my physical ability. Some things I avoid or limit doing to prevent problems but that is probably more by choice than necessity.
Based on my experience I suspect that your daughter will find few problems in dealing with her amputation. She is young and hasn't spent a lot of time walking so, in contrast to myself, I would expect that she will very quickly learn to compensate. Because my balance is suspect, I use, or at least carry, either a walking stick or cane because I can't walk a straight line for any appreciable distance. But prior to becoming bilateral, I walked almost normally. Even now, I get compliments even from people who know I am a bilat that I walk really well and the effects of the amputation are immediately obvious.
Although there are a lot of people who are TMAs due to things like frost bite etc., I haven't been successful at readily finding products specifically for TMAs. For example, socks. To get a pair of socks with a shortened foot (distance from heel to toe), I have to buy a smaller size of sock. But then the sock itself is too small for my foot (they cut the toes off and reduced the length but nothing else has changed). So I buy my normal sized socks and wear them but then the heel portion of the sock is 3-5 inches up the back of my leg. No problem if you are wearing pants but could be a bit interesting when wearing shorts, a dress etc.
Orthothes are expensive: mine were $1600 (US) for a pair. Depending on what they are made of and how they are constructed, they may last a year or less. Some, like mine, could last up to 7 years - I am currently working on my 3rd year. With a growing child, I would expect to replace them at least yearly if not two or three times a year.
You will be buying shoes to fit the orthoses which can be interesting to say the least. Unfortunately, I find it very easy to slip out of shoes, especially low top ones like athletic shoes. Slipons, clogs, and the like do not work as the toes do a lot to help keep the foot in the shoe. Also, if your daughter has a relatively thin orthosis, the orthosis will also have a carbon fiber piece (or other stiffening material) glued to the bottom to provide rigidity and preventing or restricting the bending of the foot/shoe and causing abrasions or wounds on the end of the foot. I don't have this on mine; I wear a pair of relatively stiff hiking boots almost all the time which makes it unnecessary. However, if I start to wear footwear that is more pliable most of the time, I will likely have to put either a piece in the sole of my shoes or on the bottom of the orthoses.
Talked enough for now. Feel free to ask any questions.
Later.
John
This is not a joke! I just heard in the news about some kind of regeneration treatment where a substance called "pixie dust" is used to grow new body parts where a loss has occured--To find more about it, I would just type in "the latest news about pixie dust into the search engine & I think you will find something. Hopefully, this is a wonderful breakthrough for amputees!!! Regeneration therapy is nothing new--I am 61 years old & learned about it in high school biology back in 1962. They must be making progress because now, I'm starting to hear about it again! Try to keep updated on regeneration therapy and if insurance won't pay for it, then do not be too proud to turn to your local community for financial help. Benefit dances & other activities are really a fun community project & a bother to very few--so please don't be afraid to ask for community financial support if it is ever needed for your little daughter. The best of luck to you & your little one!
cranberrymuffin:This is not a joke! I just heard in the news about some kind of regeneration treatment where a substance called "pixie dust" is used to grow new body parts where a loss has occured--To find more about it, I would just type in "the latest news about pixie dust into the search engine & I think you will find something.
This is not a joke! I just heard in the news about some kind of regeneration treatment where a substance called "pixie dust" is used to grow new body parts where a loss has occured--To find more about it, I would just type in "the latest news about pixie dust into the search engine & I think you will find something.
I really thought you were joking, but it turns out, the joke was on the BBC:
The story sounded like a medical and scientific breakthrough and was picked up by wire services, appearing in media outlets worldwide. What was omitted, however, was that the claims had not been substantiated by any kind of scientific publication, had not been subjected to peer review and that many of those featured in it had substantial commercial interests.Article
