Noelle part two

Sorry this took so long to get up! To make up for it, I have a great Halloween story. Here's part two of Noelle's story. If you didn't catch the last one, you can read that here. At the end of that post, her mom had just talked about the realization that at two years old Noelle was not ready to learn how to walk, despite being technically physically capable with a prosthetic.

As it became clear that Noelle was not going to learn to walk anytime soon, we struggled to give her the freedom of mobility that a limb-normal child would have. After an MRI and a handful of physical therapy and orthopedist appointments, she stopped wearing a brace on that knee. It was clear that the alignment was corrected and it was developing normally, so we freed her from her brace and quickly discovered that she relied on the weight and length of the brace for much of her mobility. The old brace, a complicated contraption that was irritating to put on, wear, clean, etc., was replaced with something similar to the brace she had as a baby, a soft log weighted to make up the difference between her little leg and her normal leg. Instead of being attached to a brace, the log was glued to the sole of a shoe. Noelle loved having her knee free and immediately began developing new ways of exploring her surroundings. She quickly figured out how climb into chairs and onto the couch. After just a few months she was able to stand up without any kind of assistance by crouching and straightening her right leg as quickly as possible while lifting her left leg so the prosthetic didn't drag her down. Then she would slowly straighten her left leg so the prosthetic could hang straight down and she could put her weight on the flat end of the prosthetic. Because the "prosthetic" was really just a cylinder of some kind of foam or gel or something in a purple Spandex sleeve, it collapsed if she applied too much pressure, so she learned to put very little weight on the leg and really just use it for balance. When I saw her standing up like this, I sewed a rubber patch on the bottom of the cylinder to keep her from slipping on wood floors. Once she was able to stand up quickly and fluidly in this way, Noelle was able to open doorknobs and pull all kinds of things off tables. We learned quickly to keep everything at least six inches from the edge, further as she grew.

Up until this point we had hardly paid any attention to the way Noelle was using her arms. Her left arm is amputated just above the elbow and her right arm is about four inches shorter than it should be, and the hand on that arm is deformed. The fingers are fused and sort of squished together and overlapping. The thumb joint is rolled in, forming a lump on the right side of her palm (when the palm is turned toward her face.) So she doesn't have any real hands, but she does have a kind of a scoop on the right. When we started paying attention, we noticed that she had figured out on her own how to pick objects up by pinching them between her short arm and her hand. She also was able to scoop small things like blocks into her hand and carry them around. Almost the second we gave her some dry Cheerios to experiment with, she was able to scoop them up and pour them into her mouth. That gave us the idea to glue the bowl of a rubber spoon to an elastic band, which we could slip over her hand so she could eat liquid-y things like cereal and soup. This worked so well that we became extremely skilled in the art of glueing rubber bands to toothbrushes, spoons, forks, toys, etc. so that Noelle could use her little hand to it's greatest potential.

Today, Noelle is a bright and beautiful four-year-old. About a year ago she saw a girl walking through the mall on a prosthetic leg and asked why she didn't have one. We talked it over (she didn't remember how much she hated the pseudo-prosthetics she had as a two-year-old) and she said she wanted to try a prosthesis. So today, Noelle has a prosthetic leg that attached to her left foot with a special shoe. She continues to use the soft support, and alternates between the two, depending on what she wants to do. Sometimes she doesn't wear anything at all. She can even take the prosthetic off and put the soft support on, although she hasn't quite managed to get the prosthetic on herself. She does not wear a prosthetic arm at all because she can already do so much. She also does a lot with her right foot, like drawing and painting. She has developed extraordinarily prehensile toes, and uses that foot to put on clothes and her prosthetics, and she's trying to figure out how to tie her shoes with it. She never ceases to amaze us with her dexterity, innovation, and endless optimism. I am unable to think of a single thing any other four-year-old could do that Noelle can't.

In terms of cystic fibrosis, she has been very healthy. Almost bizarrely healthy. We are absolutely RELIGIOUS about her treatments and make sure every beating-vest session and nebulizer treatment are used to their full capacity. In fact, she doesn't even seem sick most of the time, and since we moved and started seeing another pediatrician, we are questioning whether or not she really has cystic fibrosis. I will let Char know and update if I have any news on that front!

Thank you so much for giving me this opportunity, Charlotte! It's been fun (and heartbreaking) reliving and remembering our journey with Noelle, and I hope our experiences will be educational for new moms of kids with limb-differences.