Meeting other amputees (May 2015)

My husband and I decided early on that we wanted to prepare Sydney as much as possible by showing her videos of kids with their prosthesis on while doing various activities, as well as showing her videos of kids with their stump. I wanted her to have a pretty clear idea of what her leg was going to look like. We obviously haven't shown her anything intense, just videos such as this one of Jackson Stone showing people how he puts on his prosthetic.





When I was discussing with the care coordinators at our local Shriner's hospital about helping Sydney adjust to her soon amputation and prosthetic we decided that it would be very beneficial for her to meet other children who are amputees so she could see it in person and start familiarizing herself with prosthetics and stumps etc..

 

We have now met up with 2 kids with prosthetics and Sydney thinks it all is pretty cool. She tells us almost daily what color she wants her cast, or what kind of fabric she wants for her prosthetic. When the first little girl was walking up to our house, Sydney went running to the window and when she saw her prosthetic she said "Cool! I like it!" It was great for her to meet other kids with prosthetics. It has also been great for my husband and I since we have been able to ask all sorts of questions to the parents about how to care for our kids etc. One of the most beneficial visits was a little girl who is only a year older than Sydney.

Most amputations for kids that have fibular hemimelia / postaxial hypoplasia happen when the child is 6-11 months old. Since Sydney is almost 4, her/our experience will be completely different from most families who take this route. This second little girl that we met had had her surgery the year before, therefore making her very close in age to Sydney.

It was so great for Joel and I to spend time going through their surgery day pictures and post-surgery pictures. I feel like we learned SO much and have a fairly good grasp on what is ahead. I know that some things will be different for us, but we gained so much insight into what it all is like. We also got lots of tips and tricks. Tips about ice packs, how to help her with taking the nasty tasting medicine, how to help her get around more easily when she has her cast on and how to help her feel more comfortable at the hospital...etc. It was great!

Crazy kids.:)

As a side note. I talked with the Shriner's prosthetics department this morning to ask them what type of fabric we would need to get (aka if a t-shirt would work or not..). Sydney keeps saying that she wants a Brave fabric (Disney's Brave movie with Merida.. there is only 1 online and it's like $40/yard..yikes!lol), a big hero 6 fabric, a frozen fabric, and after meeting her little friend on Saturday has added in a Doc McStuffin's fabric.. Yesterday she said she wants a black prosthetic too. So hopefully she can narrow it down a little before it comes time to go shopping for fabric. For those of you that don't know what on earth I am talking about with fabrics etc.. You can choose a fabric that they will wrap around the prosthetic and put a clear resin type stuff over it. That is definitely one of the few perks to all of this. Getting to choose the fabric is all very exciting to Sydney. 

While I was on the phone with one of the prosthetists at the Shriner's, he suggested that we also set a time for my husband and I to go in and talk with them at the prosthetics department while Sydney is in for her surgery so we can sit down and ask any questions we have. I love how extremely helpful everyone is there! It's fabulous. He also told me what time Sydney's surgery is scheduled for which is helpful for scheduling babysitters etc. (they had originally told us that we would have to call the night before to find out her surgery time..so a month in advance? I'll take it!).