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.

Thinking

A couple of weeks ago, all 32 pounds of my “small but fierce” girl clomped up on a footstool, her head barely visible above the pulpit as she recited her memorized portion of the prayer during the Thursday morning children’s mass. One by one, each first grader read their portion of the prayer until it was time for the only kindergartener (Sidney) to do her portion. After speaking a couple of words into the microphone she cleared her throat loudly before going on. I can only assume this was to be if full voice. Anyone who’s been around Sidney for more than five minutes knows despite her small size, she is always in full voice. 

Sidney and I headed to the schools bizzare Saturday while the boys hunted. She got a cookie. Someone does these every year, and they always look awesome.

She did a beautiful job, but I sat in my pew for the first time in many months watching her and thinking of her biological parents. It's in these moments of intense pride or taking care of situaitons which would have been impossible in China, like the times we go to the clinic for her hands, that I think of them. I wonder if they could comprehend what's possible for her here?  Her education, Chrisitanity, medical care, and a family who thinks she hung the moon. It's another time I think of how blessed I am that God chose me to be her mom. 

We woke up this morning to more of this! An early out makes more time for fun in the backyard after school. 

Sidney's preschool class did a short play of the Hungry Caterpillar. Sidney introduced the play and took the role of the green leaf. Her responsiblities in introducintg the play included speaking into the microphone. Tom and I discussed that her teacher gave her this part, beceause she is not at all afraid to get up in front of a crowd. She definitely will never be the child given the part only to be found crying in a corner somewhere backstage. 

Instead, she was beeming ear to ear. This was one proud mommy. I'm sorry my photos are so aweful, but I can never seem to capture anything in the gym. At least you can get some idea of her happiness. Sometimes we notice her smile isn't a quick as other children, meaning her old soul comes out. There was no old soul on Thursday night. Instead, my little girl was rehearsing in her room a few hours before hand, "Presenting the Hungry Caterpillar," by Eric Carle, by Miss R's class." A few seconds later I heard this as she rambled on to no one in particular by herself in her room, "I sound great!" 

This photo is so hilarious. Coming up from taking bow! 

Happy Halloween (Late)

Very funny Eli! No, the green skinned zombie will not eat his sister. This was only before he started dragging his right leg behind him while we were downtown trick or treating, letting me know that's how zombies are supposed to walk. He also thought acting the part might get more candy.

Coughs and Sunday Afternoon Cuddling

I love a quiet Sunday. It's the time I crave when we're going through our weekday routine. It's really not that quiet as I hear a chorus of coughing. Eli and I are hoping to avoid the plague. 

It's hard to be too upset about our busy schedule. Sidney is grinning ear to ear, so eager every day to see her friends and start a new day learning. It's such a gift. 

A subject unwilling to have his photo taken! 

If I were to do a comparison to Sidney's demeanor practically leaping out of the car arriving at school, I would say Eli trudges out each morning. He loves learning, but he's a normal 6th grader. He's slowly learning there's  reason at 7:15AM mom asks if he's dressed. 7:55AM comes quickly.

So with that, we will find another new week, and I will go change another load of laundry.

School and Scouts

I have five blissful minutes of time to blog. I forced myself to vacuum the stairs first. One of the most dreaded tasks of cleaning the house. I made note our cat is feeling all of his 16 years when I noticed he didn’t budge when I went past him with the noisy machine. I think he’s completely deaf. Sorry, back to my original thoughts blogging. I think we are finding some kind of normal. Sidney has adapted to going to school all day without having a complete meltdown at some point in the evening, and Eli comes around when I threaten to take his tablet if he doesn’t do his homework. Meanwhile Sidney is jumping up and down eager to do her worksheet of practicing actual written words.

I asked for a picture and this is the expression I got. So sassy!

I think eager is a great word to describe her attitude about the newfound adventure she’s taking in kindergarten. Eager to see her friends, eager to learn, and most of all eager to be a regular kid assimilating to a place as big and new as school. I knew she was fine in school on a rainy day a couple of weeks ago, when I walked her inside watching her round the corner to get in line and heard the chorus of at least four other kids shouting, “Sidney!” It was the same after she was gone for a day for Tom’s grandma’s funeral. She charged into line as everyone yelled her name in front of the school.

Eli on the other hand, schleps his backpack over his shoulder on his way out of the car as I say at the approved volume level (so as not to embarrass), “I love you. Have a good day,” and tells me, “Yeah, yeah, yeah.” It would be impossible to tell by his dislike of all things academic that he’s getting awesome grades. Tom and I have considered on more than one occasion that he is the best of our genes pooled together. As Tom reminded his teacher during conferences he was glad our reaction to his academic performance is not the same as his mother’s during his own 6^th grade conference.

 She left in tears!

Could have used a comb and a cleanp behind him prior to the photo. I have to take what I can get. After all he didn't know I was taking it or I wouldn't have anything.

Over the weekend, Eli had an adventure camping two nights with boy scouts. Something about going into a cave on his stomach. Good thing he was home and in one piece when he told the story. Then there was the other story about getting his shoelace caught in something while one of the leaders assisted him leaving them out of eyeshot from the group. One wrong turn on a fork in the road later, and they were lost. His leader said he’s more than fulfilled the five mile hiking requirement. Tom and I are fairly relaxed people, so I found the whole thing hilarious given that this particular scout leader is exceptionally careful to the point of showing Tom the scouts camping permit issued through the council prior to leaving.

Hanging out after school. I've been informed there is no thumb sucking when she lays down at school, beause another girl was staring!

Speaking of scouting, we have a girl scout in our house. Sidney has become a Daisy and guess who’s  leading? I had four to five moms out of 12 girls that were very excited to help out. This is a miracle considering other situations I’ve been in trying to get volunteers. The girls were great together, and we only meet once a month. My experience in junior high was tumultuous, and I remember this being the one activity I was always excited about and felt like I belonged. I hope it’s the same for her. One of the moms commented that she thought Sidney was a little sister of one of the scouts and about two or three years old. I laugh whenever someone says this. She’s five going on 15.

Okay, I’m off to find sanity for the evening. 

Hurry Up!

Yay for technology. I'm posting from my phone.

We're finding a new pace. 

Eli finally doesn't complain going out the door to school, Sidney LOVES Kindergarten, and I find myself clinging to the few precious hours I have with the kids in the evening. I miss the uneven pace of Sidney's footsteps echoing through the house. At the same time I'm so happy for her loving everything about school. From the time she gets up to the time her very sleepy head hits the pillow,  she is either asking if it's time to leave or if it's coming up.  Eli is learning with as his sweet teacher says gentle reminders not to leave homework and panic three hours after school when the building is closed up.

Sidney is waiting for soup. We love our front porch and for some reason have used 

it a lot recently. Sidney wanted to eat on the porch tonight, so what the heck. We did a roast yesterday and turned the leftovers into beef stew. It was awesome!