Welcome to Discussions

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.

 

 

WOW!! Thanks to everyone for you words of encouragement.  What a fantastic site this is. I look forward to getting on here everyday and reading other people's messages.  I feel for people years ago who did not have the internet - how alone they must have felt at times.  It is amazing that the world is a much smaller place now - whether here in Western Australia or somewhere in the US we are all as close as our computer.  Again, thanks so much for the support, I can't explain how much it helps.  Take Care and have a great day!

hello nina, i hope that you are dping well today. i just wanted to say hello and welcome you here. like the others have mentioned, i am sure your child will adapt and you will feel better abut things with time. take care :)

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.  

 

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