Monday, December 30, 2013


I guess I can’t procrastinate the job I started upstairs much longer, so I figure blogging is a good excuse. I’m in the process of going through the kids clothes. I typically try to do this a few times a with shifts int the season. I'm doing it now, because Sidney is growing! She has grown four inches this year. Eli grew four and a half inches. He’s turning into my giant. When he was a baby, the doctor estimated he will be 6’5”, so when he is fully grown it will be fun to see how close he hits. He’s already a size 10 shoe in men’s, and it’s time for a bigger pair.  

It's actually kind of nice to do something brainless like sorting clothes and cleaning. My work is quiet over the holidays. I'm enjoying it while it lasts. It’s good to take time to breathe. The past week was nuts between making sure all the gifts were wrapped, juggling kids home on break with working all the while relishing the fact that we didn’t have to rush out the door every morning and could stay in our PJ's a bit longer. There is no struggle to fly out the door with Eli in tow mumbling something about being sent to his misery (school). We are in the process of making big decisions about school, but I will write about that at a later time.

It's good the holidays are chaotic, because it forced me to have the conversation with Tom that the only problem I was experiencing was a first world problem. Without all the blessings in our lives, we wouldn’t have to worry about who was getting what gift and if we’d bought fairly for each child, if we wanted to bake cookies now or later, if the outfit had come yet in the mail in time for the concert, or when I was going to have time to get the roping on the front porch. 

I spent a few days feeling very conflicted last week as a result of this conversation. Not only do I think about the children in orphanages who don't know about Christmas and have never experienced abundance, I get frustrated at the lack of understanding about true need in the world around me. And we're all guilty of it. This isn't meant as a lecture. It's also a way to process all that was in my head.
Break means more time to cuddle with mom.
What else is going on? Eli is in euphoria on break, and Sidney has finally started to regulate during the schedule change a bit more. Any change in schedule is tough for most kids, but Sidney is a kid who completely excels in a strict structured environment. I think parents of sensory kids or kids in general from a similar back ground can understand when I say she never really lands. As Tom says, she doesn't "regulate" in her environment.  So what have I done to ease this? We are big on calendars in our house. Meaning if we are going to grandma’s house for Christmas, we draw a car on that day. If we are home, it’s a blank space. She is much more content when she can bring it to me and verify what is going on for the day. 

Okay off to get something done!

Thursday, December 19, 2013

It's beginning to look a lot like Christmas...

Blogger is not cooperating or I haven't had enough coffee, but I'm going in reverse order. Sidney was more than excited to wear her sparkly dress before her concert Monday night! 

On one of the subzero Saturday's we've been experiencing in the Midwest, we ventured out for our tree. Guess who was not excited to go outside where it was freezing and walk through the lot but was more than ready to decorate? Miss Sidney. Eli usually helps with one orament, so mom can say he participated. He's lost the enthusiasum for the job but not the season. He's on the countdown to get out of school tomorrow. I, on the other hand, am frantic thinking I only have a few shopping days left!

Sunday, December 8, 2013

All Things Medical

Sidney and I made the trip to the Univ of IA for her checkup of both her right hand and leg. Just to back up if you’re reading this the first time, Sidney is missing the fibula bone in the back of her left leg and has four toes on her foot. Her condition is called fibular hemimelia, and I’m printing it here, because I notice a lot of people hitting on my posts about the condition. She has a limb difference between both legs with the telltale sign of a fibular hemimelia patient, meaning she has an adorable dimple on her knee. Fibular hemimelia is a rare condition and even rarer for a girl. It’s most prevalent in males. Our geneticist feels her birth mom either had the measles or was exposed to a toxin. Both are a strong possibility, however I’m leaning towards a toxin.

Hanging out with my cousin Finn at Grandma Jean Jean's house for Thanksgiving.
Typically people with fibular hemimelia are  impacted in other areas of their body, meaning Sidney has three well-functioning fingers on each hand.  When she came home in 2009, two of her three fingers were fused on the right hand. Our hand surgeon did the delicate work of separating her fingers. This was accomplished with a skin graft off her hip. Her other hand was completed the following May with a separate condition caused by syndactyly, but I don’t want to confuse, so back to the right hand. Sometimes after surgery there is scar tissue buildup that needs to be revised. We tried to work with the scar tissue after the originally surgery to avoid this, however given the fact that she was in a lot of emotional turmoil first coming home, and what must have been an unbearable sensation on the newly separated fingers, she did not tolerate any type of therapy to work with the scar tissue. I’m not convinced it would have taken care of the scar tissue completely.
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Last April, she went in and had the scar tissue revised with another six weeks in a cast. This allowed her the summer to have her hands functioning well again before she started kindergarten. The separation still looks great. The doctor pinned her finger during the same procedure to attempt to correct the outside finger crooking inward. After the surgery it went almost immediately back to its normal position. Mother Nature tends to have her way. The doctor feels if she can tolerate wearing a brace this will work to avoid the finger bending. Scar tissue is not pliable and does not accommodate growth, so this is why we go for a checkup every six months.

Are you still with me? Then we were off to the orthopedist for a look at the leg. She is doing well with her lift and will continue to do so. Many people ask me if she will have this limb extended. My answer is no for a number of reasons not the least of which is a 50% chance of infection. We can’t chance infection. It’s already a miracle that her foot is in good condition. Her orthopedist has commented on more than one occasion it’s the best foot he’s ever seen with a patient that has fibular hemimelia. Typically patients with this condition have to have their foot amputated, because they do not have a fully formed foot. We are so thankful God gave her an awesome left foot. Besides, her four toed foot is completed adorable. Isn’t this how we become as parents of special needs children? We see things so differently.