Saturday, May 3, 2014

Baby needs a new pair of legs

Some people have expressed interest in learning more about the process of getting prosthetics, so I thought I'd explain how it works for us.

To answer one question-- yes, they are outrageously expensive. We are lucky in that regard on two counts. One is that Angel has been treated at a wonderful hospital called Scottish Rite. You know how St Jude's commercials say no one is turned away for lack of finances? Scottish Rite is the same way. They provide prosthetics to children regardless of the family's ability to pay. The hospital has long been funded primarily by donations, and I encourage anyone looking for a good cause to donate there! Another lucky point for us is that Angel has Medicaid because she was a foster child. Medicaid is actually very good insurance if you qualify for it, so her prosthetics will not be a financial burden for us until she is 18. Once she is an adult she will no longer be treated at Scottish Rite Children's hospital, and will also no longer get Medicaid. I wonder if I should start a Go Fund Me campaign now to raise money for her adult prosthetics! The better they work the more they cost, and we are talking upwards of $100,000 per leg....The sad thing is that many insurance companies cover little if any of the most basic prosthetics. They seem to feel that a wheelchair is cheaper, and that legs are not a medical necessity. I am active on the Amputee Coalition facebook page and am appalled to see countless adults, even veterans, who struggle for years to get a set of legs! For now though, we count ourselves blessed to not have to worry about the financial aspect.

The process for fitting is that they make a cast of the residual limb (literally wrap it in plaster soaked gauze just like they would if you had broken the bone.)

April 2012-- 19 months

Then the take the mold they made and pour plaster into it to create a replica of the limb that they can work with. There are a variety of materials they then use to create the socket-- that is the part that the residual limb will fit snuggly into.

The picture above is from Angel's second set of sockets which were made when she was about 19 months. She got her first set of legs when she was 15 months old. How often a child will need new ones can vary, but you can expect about every year to year and a half. They do grow out of sockets, but also kids tend to be very rough on their prosthetics, so sometimes a set that still fits just falls apart. I will show a picture of that later....

Angel's first set were a type of prosthetics called "stubbies" which means they are just a bit longer than the residual limb itself, so they are mainly like shoes for her little nubs and it feels mostly like when she is just walking on her nubs at home. It feels more natural to her, rather than being high up on something that isn't part of her (like walking on stilts might feel to us.)

 December 2011-- 15 months

 Her stubby type looks a lot like hooves, which made for the ideal Halloween costume. Many people were amazed by her cow costume, and I had more than one person inquire how I managed to "shove her feet down in there"

October 2012-- 25 months

So she outgrew her first set of sockets in about 4 months... We went back up to Scottish Rite to get fitted for a new socket. This time they made her a set of stubbies and also a set of slightly taller legs that had feet on the end. Since we already refer to her prosthetics as shoes, we were now able to put little sneakers on to her big shoes...

These were only about 2 inches longer than the stubbies, and we got them in April of 2012. She took her first independent steps in June, quite by accident (trying to follow me out the door when I dropped her off at daycare,) and she was so startled that she became more timid about trying for awhile. It was right around Halloween that she suddenly got the hang of it and began walking independently. She wore her stubbies with her costume and from then on we began to refer to them as her costume shoes.

For awhile I pretty much retired her costume shoes so she would have to learn to maneuver in the tall shoes. Even those two little inches make a big difference in maneuvering, and these are also a lot heavier because they have metal in the ankles and are filled with something at the bottom of the sockets. She did pretty well in them over the next year, but they did not work well for climbing around on playgrounds. One reason is that the foot has no give, so when she tries to go up a ladder it gets caught and she can't just flex the ankle like we would.

In August we went back to Scottish Rite to get a new type of shoes. It had been 16 months since we got her last set. Again we got a new set of stubbies (costume shoes) but we also got her new "Bendy Shoes." These are quite tall because they have an articulated knee. Angel was doing so great on her other shoes that I felt she was ready for knees. I did not realize how tall they would be, but apparently the knee mechanism requires a certain amount of room, so these legs are apparently as short as they can be with knees, but they make Angel about the size of a 5 year old (she was not yet 3 when she got them.)

It is quite tricky to trigger the knee to bend and requires putting pressure on the toe of the foot, then sort of jerking the leg forward at the hip.

 Getting the hang of it takes a lot of practice and effort, and it turns out Angel is really not motivated to do that at this point. For one thing, being up so high scares her (and me actually because if she fell with the legs straight she could well break her arm trying to catch herself.) I have never sent her to school in them, she is still too scared of them, and very unsteady. The video is from her first day with them. They were novel then, but since that day she really hasn't wanted to practice with these shoes. I can see her point-- why work at something so scary when what I have is working perfectly fine? (It's not broke, quit trying to fix it mom!) so I have not pushed her with the bendy shoes.

She continued to go to school in her tall shoes, but as her class got older and spent more active time on the big kid playground we found the costume shoes worked much better for letting her play independently, and I relented to letting her wear them to school everyday because I feel that at the age of three, being able to run and climb comfortably is really the more important issue over the cosmetics of feet and height, and I found I worried less about her safety knowing she was in the shorter easier ones.

For a time I still had her wear her "tall shoes" (meaning the middle sized ones, not the bendy ones) to church on Sundays because I did not want her to lose the feel for them. However, she REALLY prefers the shorter lighter weight costume shoes and it soon became a battle. One morning she dissolved into sobs on the floor because she did not want to wear the tall shoes that make everything harder. Next thing I knew I was in tears too, hugging her and feeling so sad because she really shouldn't have to beg to wear the easy legs. What legs to wear shouldn't be an issue for a child. I had a moment of "why does my child have to suffer like this? Why can't we just head out the door like other kids do?" But it didn't last long. So many kids, including so many that we know, have far greater struggles. This is a relatively small hurdle, so I reassessed the situation and decided that the goal was for her to be comfortably mobile. If she can happily achieve that in her costume shoes, I will not stand in her way!

So she began to wear the costume shoes full time. It was her 3rd set of costume shoes, and wearing them full time meant she wore the tread off in a few months, and soon after all the cork was worn off as well, so we went back to wearing her old (second set)

3rd set on the right, 2nd set we went back to on the left

There are a number of suspension systems for prosthetics (meaning how you make it attach to the limb) and Scottish Rite prefers the belt system for young kids. The black part above is a separate belt type thing that holds the legs on by attaching around Angel's waist. Once we potty trained this became VERY inconvenient because we have to take them off every time she goes potty, and then have to try to wrangle them back on without sitting her down on the filthy floor of whatever restroom we are in. I end up trying to hold the 30lb Angel with one arm while using the other hand to try to get her clothes back on before setting the shoes up on the floor and trying to set her into them, balance everything, and velcro the belt closed. I have managed to drop her pants into the toilet during this little exercise. It got old, so I began looking into other suspension systems. I also looked into finding a provider closer to home because Scottish Rite is several hours away, and the process of getting new legs requires several visits....

We are now getting a new set of shoes from a Hanger provider much closer to home. Her Medicaid will be covering this. Next week will be our 4th visit there, trying out the 2nd set of test sockets for fit. The first set was way too small. If this test set works, we will go back again in a few weeks for the finished product. These will be very short and light, but they will have little feet instead of hooves. By leaving out metal parts we can make them lighter, and having feet will mean being able to put new tennis shoes on rather than wearing out the feet themselves. The best part is they won't use a belt to attach so we won't have to take them off to go potty! I look forward to it, but Angel will probably have a hard time adjusting because they will use a silicone liner that is very tight (like a pressure sock) and she is used to her very loose costume shoes. I imagine the squeezy tight liners will annoy her for awhile, but I hope that having the leg stay put rather than twisting around in the belt, as the current ones do, might make up for it. Also, she tends to come home with her legs full of sand from the playground and I really worry about this. The new tight liners should keep sand out, which could be very important to skin integrity.

One thing that prosthetic wearers have to really beware of is skin breakdown. You know how you can get a blister on your heel or toe if the shoe is rubbing? Think about how a prosthetic socket is always in contact with the skin. One tries to insure that the contact remains uniform throughout, but if one spot is tighter or rubs more you can quickly get a blister. The skin on your feet is very different than the skin on your leg, and it holds up better. Getting a wound on the residual limb can be a real problem. They can get infected readily, and the person generally needs to not wear the prosthetic until the wound is healed. This can be a real problem! Try going 2 weeks without a leg sometimes... I can only imagine trying to get Angel to master crutches for two weeks off one leg while a wound heals... Nope, instead I would be carrying her everywhere (not so good on my back) or she would be crawling (not so good on her hands, plus it can feel rather undignified....) So far we have been very lucky and have not had any skin problems. I try to be conservative on the amount of time she spends in her shoes, taking them off for naps and when she is hanging around the house, and sometimes even while riding in the car. She herself will pull them off and announce that her "nubbies need to rest." I'm not really sure how that will work when she is older and is in school full time, but we will just wait and see what works best for her as things come.

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