Getting A Leg Up: Fibular Hemimelia

I read an article on the news about a man who lengthened his limbs. Honestly, it angered me to read the article. At 5’6”, the man was unhappy with his stature, so he moved forward with lengthening both legs. Why am I writing about this? Because, it’s the same procedure we could use for Sidney’s limb difference caused by fibular hemimelia. Fibular hemimelia simply means she is missing her fibula bone and the larger bone in front is shorter than the opposite side. 

Infection is a very real fear with this particular procedure. In the following sentence, I will describe how the medical procedure takes place. If you are easily grossed out, go to the next paragraphJ  “Surgeons break the leg bone in two and implant a state of the art telescopic rod into the middle of the broken bone which pulls the bone apart very slowly, about one millimeter a day.”

 In order to manipulate the bone, there are guide wires going into the leg which can easily cause infection. Sidney needs both legs and the thought of interfering, and possibly doing something to cause irreversible damage (amputation,) is a risk we are not willing to take. It’s a hot button topic amongst parents of children with similar medical issues. And in no way do I understand the intricacies of how each parent makes the decision to move forward. I’m not here to advocate against it. It’s simply not for our family. This is also a decision which Sidney needs to make. It’s her choice as a teenager or an adult should she decide to do so. And time and medical technology are on her side. For now, she’s literally dancing in front of me. 

Waking up to a beautiful back yard.

 Her leg is the special need we rarely talk about, because it doesn’t impact her life. She’s limitless, because she’s never been told differently. Nobody was there to intervene in China, outside of Half the Sky, simply helping her to learn to walk. She learned to use what God gave her. And it’s so much more than many children born with similar afflictions. As she grows, the 13% difference between her legs becomes more pronounced. So one day, her left leg won’t touch the floor. This is when a prosthetic lower leg will be necessary. 

But, there is always a positive spin. According to our orthopedist, a prosthetic lower leg will be necessary “when she goes out for sports.” I LOVE this! A person is only limited by perception of their ability. Our orthopedists perception is potential. This is why we continue using him.  There is no feeling sorry for her, or looking at her from a unique medical perspective. He only sees positive forward movement. And it also helps that he’s been on the bad side of mama bear.  Imagine my response to his comment, “she won’t be able to wear high heels.” GRRRRRR! 

So for now, we watch and wait as she dances across the living room, and climbs the arm of the chair, leaping off. That’s only before mom tells her for the millionth time “you know you are not supposed to jump off the furniture. It’s not play equipment!!!”

Musings on Xinran's Book

I finished Xinran's book. It was a tough read. If you haven't read it, and your a China parent, I recommend taking the advice of the other travel families from our group. Take it slow, reading only a chapter a day. Give yourself time to mull it over and digest what you've read. It's not pleasant, happy, and it doesn't give you a warm fuzzy feeling. But, that's not what I expected. What I got in return satisfied my constant curiosity over what drives people to abandon children. As a person from Western society, the topic confounds me.

Yes Mommy, you make take my picture, but only if I can have crazy hair.

Reading the book peaked my curiosity. I think about and pray for Sidney's birth family on a daily basis. That they might find the resources they need, if they are living in a difficult situation, but mostly I pray they find peace. I don't know why it's been my constant prayer. I guess I sense there is pain on their part. Pain they couldn't take care of their daughters health, pain from abandonment, and sorrow the situation couldn't turn out differently. Abandonment is tragic for the child, but it's also tragic for the parent. Xinran tells this part of the story well. It was also a reminder, my daughter has a whole other story I will never know or understand, and Tom and I have the responsibility of helping Sidney find a place of contentment. Of course, my beliefs tell me some day, Sidney will meet her birth mother. It just won't be in this universe.

And just as I have a serious conversation, I look up to see Sidney attempting to balance a spoon on her nose. Where did all this spunk come from?

Cha-cha-cha-changes

 As we make adjustments to the ways we work with Sidney, subtle positive changes are taking hold.  Neglect, especially early neglect, doesn't resolve easily or quickly. It doesn't allow me as a parent to have definite parameters. It's not neat and it doesn't fit easily into a box. It challenges me to think differently. It's a balancing act, and a constant reminder, there isn't a timeline on healing. But, if I remind myself how far we have come, the strides she has made, the healing which has taken place, I feel confident in how we are handling things. 

Of course there are still moments I am blogging and I see this ornery face.

Phew! That was heavy stuff. I think I need to lighten it up a bit! But, I still contend, the flowers need to come out of the attic, because this is the way we learn as adoptive parents. Sharing is how I figured out the basis of what we were experiencing. And I'm so glad I gave it further exploration, and I didn't shrug it off as something normal in childhood development.

Eli received a bunch of pins and loops for his belt in Boy Scouts. He also began something completely new and perhaps a bit controversial. Dodgeball. It's absolute chaos, and he loves it! More on my run in, key word moron, in my next post. 

We had Valentines Day. Not a big, huge deal in our house, but my kids loved making valentines or shall I say, my kids loved watching me make valentines Saturday night. I went old school this year. I bought a package of card stock and we were on our way.  Thank you pinterest for the ideas. Where did we go before pinterest for fun ideas? 

Mom, if you bribed me with Valentine's candy from the beginning, blogging might have been a lot faster!

OK, off to check out the shiny new can on my counter. VBS curriculum is in!

I'm Sensing Something Sensory

I am looking at freshly painted walls. Both kids were shipped to Grandma Jean Jean and Grandpa Bob Bob's house for 2 nights while mom and dad enjoyed silence! I'm a strong believer in breaks for couple time minus kids. There are so many times our conversations are interrupted, despite our attempts to teach the kids differently. It was nice to finish a sentence for more than 24 hours. 

Super bowl vultures hovering over the snack stadium.

 Since I last wrote, I have read a lot and talked with other parents from the China program. Sidney has disruptive tendencies and at times she misunderstands socially acceptable physical boundaries. This is made confusing by her ability to stay on task during activities. She can sit and color or work on projects without issue, but during down time she struggles. This was key in figuring out, it's probably sensory dysfunction. With this in mind, we are taking steps to ease the tension this creates in school and our household.

First, I finished the book the Connected Child. I typically laugh about people jumping on board with parenting books, but like so many other times as an adoptive parent, I stepped outside my comfort zone. It helped to better understand how to discipline without so much disruption. There was awesome information on diet and how it impacts her already altered brain chemistry. Altered brain chemistry meaning, it was altered by neglect during crucial stages in infant development. 

Why not one more cheese puff?

After finishing the book, I started a behavior and food journal. This will help to better better interpret behavior patters leading up to tough days. I also sat down one on one with Eli. I reviewed what he already knows. Sidney probably didn't get held and played with enough during her months in the orphanage. This is causing her to do some unpredictable things. I also let him know he isn't going to get into trouble for reacting, if she is hitting or pinching. I reassured him, we are trying to take steps to help her become less impulsive.  
 

Only my good friend Jill could create a 50 yard line of carrots and dip.

 We are making efforts to decrease chaos during the school week. I remember at almost 4, Eli had difficulty with more than 1 activity outside the house per day. I started thinking about how this impacts a child like Sidney. Tom and I have begun coordinating his side work on nights opposite Eli's activities. This decision includes pulling her back out of Wednesday tumbling while Eli takes taekowndo. This allows Sidney one on one time with Tom while I watch Eli and keep her from the chaos.

 

Mom, this game is making me tired.

So, this is where we are so far, and I will continue to post updates, on how things are going as they come up. I am more than happy to openly share, because there is a lack of information available on sensory stuff.

Like so many other things, we see incredible strides in other areas. It only makes sense, where one area falls behind another excels. I will keep you in the loop in the coming days. Thanks for listening!