Pumpkins, Pumpkins, and More Pumpkins

We have awesome grandparents who host an annual pumpkin carving party. Today, our kids were surrounded by cousins having a great time.

Sidney was able to see her China cousin AnDee. AnDee is 8 and came home in 2005. My brother and sister in law were home a year with AnDee when we decided to start the process.

 

Mom, less pictures, more carving.

 

Mom getting in on the action with Eil and Ashtyn (our niece).

Grandpa resorting to power tools for the 

finishing touches.

Tom tackling the beast.

It was a great day. Thanks Grandpa and Grandma!!!!!

Pumpkins and Pokes

Friday – finally! This stay at home mom is excited for a husband not working over the weekend. It sounds too good to be true. Just as I say this, someone will call with a heating emergency. It’s been a long week. 

We had Sidney’s three year old well child checkup. Yes, we are very behind getting it completed. By the time she turned three, we were maxed out on the doctor’s office. She’s 5% on height and weight. My tiny peanut will always be petite. Our doctor assured us again, as long as the curve is upward, she is fine. This was also on the American growth chart. We talked a lot about eating. He was able to give us a couple of ideas. For now, we have seen some positive changes. 

Immunizations were also updated. Ouch! Mommy felt terrible. She screamed. I know, we’ve completed two hand reconstructions, but she is sleeping when the IV is put into her arm. I can’t stand the pause between the “what’s she doing” as the nurse rubs on the alcohol swab and the scream two seconds later. I call it a necessary evil. After the shots were done, she commented as the nurses walked out, “they did naughty.” 

We are finishing football this weekend. Eli’s excited it’s about to end. I think it’s an experience he’s not repeating next year. Tom and I supported him, trying out a new activity, but his interest remains in Taekwondo, Legos, and the 4^th grade Foss kit. “We dissected owl pellets today. Listen, Mom. I’m going to explain how the owl vomits. It’s not like a human.” And if you are a queasy person, skip the next sentence. “It doesn’t splatter.”  

As long as he’s happy, we’re happy. He’s had a rough week. I will spare the details, but let’s just say bullying is alive and well. Only now, the teachers are faster to swoop in. This is one of the only times he’s experienced it, so it was upsetting, to say the least. 

The photo above is the only decent picture I captured during our visit to buy pumpkins. Notice how much less cooperative my children are this year versus last year. In last years photo, Sidney and Eli look like to angels on either side of mom. This time, Eli couldn’t manage to stand nicely while Sidney turned her back. They are tired of mom’s camera, but it’s not going away. Sidney had a great time until her wagon load of pumpkins rolled down the patch owner’s steep driveway into the street. Excuse the quality. I’m having issues with my camera, so all my photos suck. I think I might be investing in something new. 

Off to finish Eli’s Halloween costume. He’s Anakin Skywalker. It’s basically a brown robe. I’ve never sewn an actual garment. Maybe quilts but never something to wear. It was a risky move. Let’s just say, I’m happy people will see it from a distance. It was good practice. As you can see after my brief day working, I have settled back into a good routine. Many things have pointed in the direction that I made the right decision. Not that I needed a sign, but sometimes it’s nice to see the universe align.

Absentee blogger is back

Wow, I  haven't made many entries in the last couple of weeks. We are crazy busy. 

Loves playing in the leaves and asked mommy to fill it up.

I’m in the midst of trying to find footwear for Sidney. She has a limb difference of about 1 ½ inches. We purchase two pairs of shoes, because her feet are two different sizes. It takes her a couple of days to get used to the bulk of the lift. We tried Nordstrom’s for the first time. It allows people with feet of at least a 1 ½ size difference to buy two pair of shoes and return the unused sizes. This is awesome, because Sidney’s feet are a size 4 and size 8. I read the history and the store founders wife had polio. Though it’s a store policy, I always feel like there’s someone needing it worse.  

Finally picking our late planted tomatoes.

So, the difference between her feet is obvious. As she grows, we also face the physical difference developing between legs. It doesn’t have a negative impact on Sidney’s overall wellbeing. Thankfully, she’s still young enough, she lives blissfully unaware this is taking place. She calls her smaller side her “little foot.” As a mother, it’s tough. I thought I moved past the emotion involved in watching anything adverse happen to my girl. But that’s not the case. And I don’t share this, because we feel sorry for her. If anything we ignore barriers based on society’s perceptions, thinking of possibility alone. I think it’s my lack of control over the situation that’s troubling. 

If your catching up, she has hand anomalies, but her hands were caused by fibular hemimelia. This means she is missing her fibula bone. This creates a limb difference which becomes more pronounced as she grows. There is a 13% difference between her right and left legs, but 13% increases as she grows. It bodes well for her that she is small and petite. 13% isn’t as much for a person hovering around 5ft as an adult as it is for a tall person. 

Writing this, it seems ridiculous to bring it up. Sidney is thriving. We’ve worked past so much in the last two months alone. She no longer follows me to the bathroom. If I go upstairs to do something quickly, she doesn’t follow me screaming. It’s wonderful. It’s a huge burden lifted. She’s starting to better understand permanency. Her recent night terrors have gone away. She’s sleeping in a toddler bed. She wakes up every morning and looks outside with the happiest expression and says “sun up!” She loves school and tells us, “I want to learn to read.” 

Honestly, most days, we don’t remember there is a physical difference. It’s Sidney. Physical steps backward don’t matter, because for every physical step backward, there are a million more forward. everything, she’s a normal, ornery three year old. , I wonder what the people in the orphanage might think if they could see her now. 

We are off to Eli’s football game. I am interested to see if this is a one season extra curricular. Then there’s Tom work like a mad man. It’s getting colder each morning. His 9-5 is busy, and our side business is crazy. He worked a 16 hour day yesterday. I joke that he needs to go out to the garage and take up a hobby like woodworking for the other 8 hours of the day. Who really needs sleep? And like a gift from above, he found out he isn’t on as tight a schedule as he thought, and he will be home today and tomorrow! 

OK, off to find enough clothes to bundle up for the football game this morning.

Business

No photos again! I'm sorry. I'm having issues with my camera and figuring out a new phone. 

I’m an absentee blogger this week! We are busy. Three mornings of preschool a week for Sidney, doing homework, finishing Eli’s football season, Boy Scout popcorn sales, and time in between for Tom and me somewhere. Grandpa Steve and Grandma Sheryl (Tom’s dad and Mom) took Eli and Sidney last night, so we could escape for a night camping with friends. We are extremely lucky Sidney is close with both sets of grandparents, and she does amazingly away for a night. If we say, you have one sleep with grandpa and grandma; she believes us and understands we are coming back. I also say it’s because I stay home. They are ready to be away from mom for awhile.

One of our appointments this week was to the dentist. All 35 inches of Sidney’s frame fit over the back to the exam chair. “I feel a catch,” said our kind dentist. I knew what that meant. I groveled, “we brush religiously.” I discussed her rough nutritional start.  She had no appetite coming home. We were guaranteed apple juice was a few extra calories. There are also a couple more cavities forming on the other side. I am only thankful we have a chance to reverse things before her permanent teeth come in. 

She needs to be numbed up for the fillings. We are being careful not to lose her level of comfort in a medical setting. It’s important she feels safe. Our dentist agreed a sedative is probably best, given her past and future hand surgeries. We don’t know how many. It depends on how things shift as she grows bigger.  I don’t like to give unnecessary medication, but our situation is unique. When she’s older we can rationalize a bit better.

After her visit last week, we dealt with night terrors during the middle of the night and during a nap. They are typically triggered by going to the doctor or if her schedule is thrown off. It goes with the territory. We can go months with none, sleeping through the night without her waking up. If she starts having them, they usually go for a few nights before stopping. Typically, the day after having one, we can expect she will be grouchy. This time, we are experiencing something different. There’s a song she sang in China and continued doing so after she came home. It’s kind of a haunting melody with theatrical movements. We have no clue what she’s singing. We haven’t heard it for awhile, or we heard the melody with English words. She started singing it in Chinese the other day. It was bizarre, but if she’s going to retain something, thank goodness it was something she enjoyed in the orphanage. One of the first things I remember loving on her referral was the comment that she loved music. 

Eli is finishing up the last couple of weeks in football. He continues to play center in the games. He is motivated listening to his coach, and he loves working with a team. Tom was more athletic than myself, but you don’t have to go far to have more athletic ability than me. Let’s hope the biological differences between Sidney and her parents are a positive factor in her athletic prowess. I will be interested to see if he goes out again next year for football. He looks disinterested during his games, but I could be completely wrong.  

Sidney brought a pumpkin home from school today. She was so proud of it. It’s those adorable moments that I love the most as a parent. Kids have such an appreciation for things we miss in our hurried lives as adults. Sidney also has an appreciation for being given things that I haven’t ever seen in a child. If she gets a new shirt, she typically tells me “oh, thank you mommy!” It’s awesome.

OK, off to get something productive done before another busy week begins.

Hands and Hips

Friday, we had a good visit to the University of IA with Sidney's hand surgeon and pediatric orthopedist. We are blessed to have access to the U of I's orthopedics clinic within an hour of our home. Sidney's hand surgeon said things haven't moved or shifted with growth. Great news! A persons hands don't stop growing until the age of 15, so checkups will be a normal part of our routine. She had a syndactyly reconstruction in January 2010. This means two of her three existing fingers were fused, and the surgeon separated them, allowing them to function independently. A skin graft is used in the separation of the digits. What remains is thick scar tissue between the fingers which might cause her pinkie to tip further inward.

As the surgeon mentioned the possibility of another procedure, I felt a pang of guilt, thinking I could have done more with physical therapy to prevent scarring. Moms are never easy on themselves. Typically surgeons don't give a physical therapy order after syndactyly reconstruction. We wanted the best possible result. Our physical therapist used ultrasound, and we worked at home, rubbing Vitamin E oil into the scarred area. Then Tom reminded me, Sidney couldn’t tolerate the physical therapy. It made her miserable, unable to sleep with the splint, and she began showing signs of regression. Sidney was telling us, "you took me to the doctor 12 times last year at the University of Iowa. This doesn't include my pediatrician or the times I needed antibiotics for a cold. Stop messing with me!" It was also like sensory overload. Imagine having something together your whole life and suddenly separated. Then factor in someone rubbing it. It makes me wince, thinking about it.

This apprehension has some positive value. It makes Tom and I cautious about surgery. If things haven't shifted or changed, there is no reason to move forward with surgery. That's why we are keeping an eye on it.. I understand surgeons are talented professionals. But they are also anxious to cut and correct and perfect. I think our hand surgeon is finally on board with our objectives. This doesn't mean we won't do what's absolutely necessary for our girl. It just means there is a limit to how much we are willing to sacrifice, in order to achieve the surgeons vision of perfection. For all we know, the scar tissue could stay the same for the next five years. And this might not happen, and that's ok. But again, our goal is balance in her life.

Next, we were off to the pediatric orthopedist. He's responsible for monitoring her leg. If you are catching up, she is missing the fibula bone (fibular hemimelia) in her left leg, causing a limb difference. As she grows, this limb difference becomes more pronounced. Meaning, there is a 13% difference between legs. One leg is shorter and smaller than the other. With this particular special need comes concerns about stress on her spine and hips. Typically, the hip on the side with FH, isn't the same. Everything looks good. Her hip on the shorter side is developing well. For now, we have shoe shopping and an updated prescription for the lift to fill. And the difference between legs has increased with growth. Her lift will be over 3 cm. As long as she can maneuver, and believe me, she can maneuver, we will continue with a lift. Eventually, we will look into prosthetic devices. She will be older when this takes place. There is really no time table since we don't have a roadmap indicating her growth.

Her age makes treatment better and worse. Better because, we can tell her to hold still during the x ray, or we are only going to one more doctor, and you are done, and she cooperates. Luckily, the hospital does a phenomenal job of working with children. We should have some opinion about the quality of their work. I keep telling parents of limb affected children, the first year is tedious, sorting out the mysteries, getting the tests done to look at overall health and well being, but once you are done with the first year (at least in our situation), it's easy. Treatment has taken place, and what follows is checkups and tweaking, if necessary.

So for now, we are thankful to continue normal life. As normal as this family can be.

Check Up

 Things are getting back to normal. Thankfully, Sidney has avoided the preschool sad pad (timeout). I started thinking about my tiny fighter. If Sidney is disgruntled, or wronged by another child, she takes care of business. She doesn’t have the capacity to tattle. It’s instinctual, but we haven’t experienced it, outside of friends and family. School is a new opportunity for behaviors to arise. We are talking a lot about the appropriate way to respond if someone is bothering her or she is mad. Like everything else, in parenting, it’s a delicate balance. We don’t want her to become a doormat.  This spunkiness is what gets her through different challenges, both physical and emotional.

We have checkups this week. Our hand surgeon will check both hands and see what, if anything, changed over the past year. Sidney has two fully formed hands with three fingers on each, including thumbs. Her right hand was webbed (syndactyly) at birth with the middle finger and pinky finger impacted. Her first surgery, in January of 2010, worked to reconstruct the area, separating the fingers. A skin graft was used with a donor site from the hip. Sensation and getting used to the feeling of putting something between her fingers was a huge hurdle. Four months later, we tackled the left hand. Not only was there syndactyly (webbing), there were issues with her growth plate on her middle finger. It was in the shape of the letter C, allowing the finger to grow wider instead of longer at the base. A small graft was required for this procedure with a donor site from her upper arm, leaving a small scar the size of a mosquito bite. Both surgeries took about six weeks for recovery, and removal from the cast, then another six weeks with a splint. 

What's that under the cabinet....ok, don't look too closely!

 Tomorrow is a visit to the hand surgeon, and later in the morning, we will visit her orthopedist. Her orthopedist will check on her leg. She is also missing the fibula bone in the back of her right leg. It doesn’t impact walking, running, jumping, climbing (believe me it doesn’t impact climbing J ), or functioning as a normal kid. She has a lift in her shoe to compensate for the difference in length. And no, they aren’t ugly orthopedic shoes. We purchase and an orthopedist in the area cuts the soul in half, placing an insert inside. So, it’s the same shoe just higher and a smaller size. Patients with fibular hemimelia are typically missing bones and toes in the foot. Sidney has a perfectly formed left foot, missing a toe. 

Whew! That’s a lot of medical information. Are you still awake? Like I tell everyone, it’s nothing in our daily life. Outside of the first year, when doctors attempt to unravel the mystery, and checkups like tomorrow, we don’t go to the doctor any more often than anyone else. In fact, her immunity is super. She had a cold this week, starting Monday, and it’s almost gone. This might sound like an odd comment, but we couldn’t be happier with her special need. Not happy, because she has to contend with a special need, but because, it’s so, incredibly manageable. She’s just missing a couple of digits and a bone. Pardon the phrase, but as Tom says “big frickin whoopty do."