Saturday, May 29, 2010

Medical Mayhem: Part II

Thursday was an awesome day. It was the culmination of the end of two surgeries which have drastically changed the quality of Sidney's life and function of her hands. If you are just tuning in, Sidney has three fingers on each hand. On the right side, two fingers were fused by skin. On the left, her middle finger was growing wider at the base as a result of a misshapen growth plate and bone which needed to be reconstructed. We are at the tail end of the second surgery. Prior to travel we were aware something would probably have to be done, but we were not aware one side was webbed.

Could we have taken all of this to a geneticist or orthopedist prior to travel and gotten a more complete picture? Yes. Did we? No. Some might find this a careless attitude. This was the only time my life that I have truly gone on gut instinct. If you know my personality, I am overly cautious and analytical about everything. This is the only time in my life I have gone on raw instinct. Something greater than my being was intervening. I have no other explanation for my behavior. Other parents of special needs children will understand this instinct. We did speak with doctors to comb over her other medical information. We also felt that we would never have an accurate picture of her needs until we were home.

And for my readers outside of the adoption world, trying to contemplate the definition of special needs. Special needs is a variable term. Typically children come to the United States with very fixable medical issues. These are children who are typically (of course there are many, many exceptions) fine outside of a correctible medical need. A society critical of anything outwardly different has shunned them to a place which will never give them purpose. So this is my motivation when we step back into the clinic.

A pin was removed from the middle finger on her left hand. The pin itself had the appearance of a fishhook coming out the end of her finger, perfectly healed around the outside. Mom stepped out of the room with Eli who was a bit freaked out by it. Tom said there was a bit of twisting involved to get it out, and it went about an inch and a half into her finger. Sidney, trooper that she is, didn’t so much as wince when they took it out. Rather she started crying when it was done. Afterward we went to physical theraphy where a splint was made.

Luckily, the physical therapist showed us how to use a wrap to keep the splint on the hand. It is not sticky but adheres to itself. She told us we can pick it up at any farm supply store, because it is used on horses. This was only after waiting in the reception area with an inmate. This is a state hospital, so we see some fairly interesting people. As we stood waiting to have Sidney’s splint done, we were treated to a conversation between the guard and inmate on how he injured his hand “lifting weights.” Obviously, the guard was pressing him. Eli’s eyes were like saucers when he saw someone in shackles in the waiting area.

After a couple of days home with the splint, Sidney remains very protective of her hand. She does not like when we take the splint off for a bath and frequently turns it over and speaks in a very serious tone. I am unsure of what she is saying, but it is adorable. Poor baby was attacked by a mosquito in the night and has about five bites on her cheek. Mommy feels absolutely terrible. This was in addition to the three she got on the nature trail yesterday. It looks worse than the rash from giardia. Hopefully the redness goes away partially today.

We are off to visit Grandma Jean and BobBob (Sidney’s name for Grandpa Bob).

Thursday, May 27, 2010

Medical Mayhem: Part I

This week Tom took off a day and a half for Sidney’s medical appointments. Eli was able to come along and did a super job of distracting his sister. Wednesday was genetics.

Up to this point, attempting to understand the cause of Sidney’s condition was speculative. This is evidenced by the amount of time I have spent reading online medical journals, attempting to unravel the mystery. Last July, our pediatrician referred us to a geneticist to better understand what caused her condition. A combination of bad weather and two surgeries prevented a visit until yesterday. This particular appointment was one of the most fascinating of the many since returning home in July.

During the appointment, Dr Oleg our geneticist, as well as a genetic counselor and a resident from the university hospital talked with us for about an hour. He started by explaining that something typically interferes with normal development of limb buds between 6 and 8 weeks gestation. This interference is something in a pregnant mother’s outside environment. He agreed it is possible her mother came into contact with some kind of toxin, damaging the gene responsible for the growth of digits. This could especially be true, given Hunan province is the “the rice bowl of China.” Sidney’s province is the second largest rice producer in the country. Tom asked if adequate nutrition was a factor. Dr. Oleg leaned toward the idea that it was exposure, letting us know that anytime a bone is completely missing, something interfered outside of the body. He also told us trying to uncover the reason with 100% accuracy is like going into a dark room of medical books and trying to find one misspelled word in all the books with a nightlight.

In addition, the doctor completed a series of measurements including the inside and outside of her eyes, circumference of her head, length of her nose, the outside and palms of her hands, and finally the tops and bottoms of her feet. As he rattled off a series of measurements, and the scientific name of each body part, Tom and I tried to contain our laughter. A combination of stress over the visit and our quirky sense of humor took over. Not only was he taking measurements, he was ducking into and out of the tight area between the exam table and the wall. This was in an effort to get the correct angle, looking at all the features on her face and how they lined up. Squatting down on the floor he continued his list of various parts of the face as the gentic counselor frantically wrote everything down. On the side of the room, the resident with a slight look of mad scientist observed.

Prior to our visit, Dr Oleg studied Sidney’s medical information. One of his concerns after looking over the information was the rate at which she is growing. If she continues at the current rate, she will be 4 foot 6 inches as an adult. This is something which will probably change, but it is something we want to monitor. There is no disputing our little spicy chili pepper is petite and small, however she has grown a few inches since July. I questioned the use of a Western growth chart as it does not take into account her ethnicity. Much to my chagrin, he did not take her ethnicity into account and was using a growth chart from the United States. He argued that people who immigrate from other countries typically catch up to our growth charts. He used the example of Pigmies who moved to the Western world and quickly caught up. Mommy and Daddy might not have a scientific degree, however common sense tells Tom and I that we need to give her more time. I reminded him of her giardia, the length of time she had the parasite, and a minimal amount of nutrition in an environment of custodial care. He said they also went back and forth when discussing her health history prior to the visit. We will give her at least a year before reassessing her height. Thereafter, we will consider a blood test which can determine if she has some kind of thyroid issue. This is not funny, but there is some humor considering everyone on Tom’s side of the family has some kind of thyroid issue. I think the geneticist enjoyed bantering back and forth with a mother unschooled in science but convicted about her daughter.

Outside of growth, the geneticist is taking a very common sense approach to her care. Meaning, we will have an EKG, renal ultrasound, and a series of skeletal xrays . Luckily, the EKG and renal ultrasound will take place in a hospital about 20 minutes from our house, and the xrays can be taken when we are already at the university hospital, completing visits for her hand. Though we will not know entirely until the tests are read, the doctor felt confident in saying, he does not think there is anything major with her heart. He detected no murmors and said the test will decipher any possible damage to vessels.

Because Sidney functions as a normal 2 year old, probably ahead of her peers, the genetic counselor was quite surprised at her fine motor skills. This is the reason I had Sidney coloring, drawing circles on a piece of paper when they walked in. We never want to give the impression that Sidney is limited by her anomalies.
As a final note to this very LONG post, I will say for the thousandth time that none of this makes a bit of difference in our daily lives. We understand and respect that special needs adoption is not for everyone. But in the words of another adoptive parent that I read, Sidney’s only special need is her need to be special.

Sunday, May 23, 2010

My Favorite Boy

A combination of too much sugar during our nieces graduation open house, rows of cupcakes sitting in the kitchen for school birthday treats, an 8th birthday tomorrow, and getting out of Thursday have caused Eli’s excitement level to go into overdrive. Eli attends a small Catholic school and his entire class, the secretary, principal, and anyone else gets a treat. This means mom copious amounts of cupcakes. What fun to be 8 years old!

I try not to remind myself it has been 8 years. I sat in my living room watching VH1 Diva’s Live, hoping the base from the TV might throw me into labor. It seems like I blinked my eyes, and I have an 85 lb son sitting next to me. This is something I am very aware of when he comes in for one of his famous hugs. Eli likes to sprint across the room and jump into my lap, the same way he did when he was 3 years old.

The doctor wanted to induce labor a week prior, however I let her know that he was like his father, in no rush, and he would come in his own time. I was given a deadline to be induced. The morning before I was to go in, I went into labor. At 4 am, Tom and I were walking the curbs around our neighborhood trying to get the beginning stages of labor going strong. By 7am, we were driving to the hospital and an hour later we knew we were staying. 19 hours after the whole ordeal began, Eli was born. This was only after I convinced the doctor to let me push 10 more minutes before going in for a C section, as Eli once again took his own sweet time. If you were to meet Eli today, he is much the same, never in a hurry and always saying, “Mom, don’t rush me!”

This was the same line I heard today as we headed out the door to our niece Alie's graduation. Her sister AnDee is from Jianxgi privince. Tom and I were already motivated to adopt, however after witnessing my sister and brother-in-law, we decided to move forward with China. Jiangxi province is east of Sidney’s Hunan province. AnDee is a spunky kindergartener, and I love to see her eyes light up when she sees Sidney. This is special for so many reasons, but as my sister-in-law reminded me tonight, their provinces relative proximity to one another was meant to be.

I am off to frost another batch of cupcakes.

Thursday, May 20, 2010

Sweet Sweet Slumber

Sidney is wolfing down goldfish, and I am taking a break from walking and playing outside. Her appetite has increased since surgery. This is positive for several reasons. She was underweight due to giardia when first coming home and at one point was down to just over 15 lbs. She gained about three pounds after the parasite was eliminated. Factoring in what she weighed prior to surgery, we think she has gained a minimum of half a pound since January. She is somewhere around 18.5 lbs to 19 lbs. If you are not in the adoption world, this is not abnormal by any means, given her petite size.

Eating has always been a bit difficult. When we first came home, it was difficult to get her to sit at the table which is fine, we can be flexible. She was happiest when I sat on the floor, to feed her with her standing next to me. I have seen photos of orphanages during a meal, and the nanny is typically sitting on the floor feeding the child. My dad also indicated to use a bowl. He spent a lot in time in Asia in the military when he was younger. He has given a lot of great insight.

Now she sits at the table during dinner but waxes and wanes on the length of time. When she is ready to get down, we typically let her mill around the kitchen. Once Eli and Tom have left, I try to get her to eat more. She is not good eating in a large crowd with a lot of noise and chaos.

We battled sleep for a couple of nights, but this seems to be improving. She is still anxious when it is time to lay down, but after some cuddling, she is okay. This is definitely easier than two hours in the middle of the night.

The cast comes off a week from today! We are more than excited, and we know Sidney is ready. This cast was more difficult than the first. The cast itself is great and has not come off, however it is obviously restricts her mobility. With the limb difference the extra weight changes her balance. A majority of the time, the cast is no big deal, but I know she will be happy to have a bath without the gallon ziplock sealed around her arm.

Meanwhile, Eli is on a countdown of his own. A week from today, summer break begins. Eli is resourceful and does a great job entertaining himself but likes to test mom’s patience. I guess this is no different than any 7 year old. It will be great to have him around as he does a wonderful job entertaining his sister.

OK, off to find more work. I am bidding on more outsourcing jobs, so hopefully something pops up this week. Unfortunately or fortunately (I am not sure if it is good or bad), I am a stay-at-home mom needing to use my brain. It might be easier if I did nothing. However, I have learned so much. When else would I have learned about mining in Australia, grocery retail in former soviet countries, the southern coastal tourist areas of England, or any of the other many, many things I have written about? It satisfies my curiosity while allowing me to be at home.

Sunday, May 16, 2010

Tales of a Sleepless Sidney

Sidney’s latest turn into a bedtime bandit continued last night. Today I decided, if we eliminated ear infection as a possibility, it might be easier to contend with her nighttime antics. Her ears are thankfully clear. It sounds strange, but I was kind of hoping she had ear infection so there is a reason for her behavior. Eventually, she will feel back to herself and things should resolve themselves. For now, the morning pot of coffee might be a bit emptier than usual. I remember going through phases like this with Eli.

Like Sidney’s newest fashion statement? She loves to try things on. These were her brothers boots a number of years ago and are still sitting out from a donation we made to Good will. I thought the boots in combination with the cast were a great fashion statement. I would also like to report that she is now in bed and it is quiet!

Saturday, May 15, 2010

Tales of Sleepness Nights

We have experienced a crazy last couple of nights. Sidney has never had night terrors but started this week. Our nurse during surgery told us this might happen. Basically it happens about an hour after they lay down and takes place the first third of the night. Kids don’t remember ever having a night terror as evidenced by Sidney giggling and running around the living room! This too shall pass. Check out my other blog, I was trying to better understand them, so I decided to write about it for today’s entry -

On a more positive note, she is totally off of pain medication and seems to be doing much better outside of the stuff that is going on at night. We are back outside for stroller rides and enjoying running around the yard. Thank goodness the cast is closed off on the end. It will come off the last week of the month. Something we are all excited about! We notice the second time with the cast has been a bit more frustrating for Sidney than the first. The first time, the whole concept was new. Now she understands that it limits her ability to play, so she gets annoyed. The pin comes out the same day the cast comes off, and physical therapy will create a splint for her hand. This allows us to give her a normal bath outside of the bread bag and sprayer in the sink routine. Our hope is the splint is gone before vacation…….fishing that is. Yes, dad is already looking for the appropriate Dora fishing pole and has selected a life jacket small enough to fit her 19 pound frame.

We are off to a family graduation. 2 hours one way and another 2 hours back. Tom and I consider it an opportunity to talk like adults. Sidney typically falls asleep, and as bad as it sounds, I am more than happy to throw in a DVD for Eli while we drive. Ahhh, the sweet sound of silence as I sip a mug of coffee, talk to Tom, or read a newspaper. It doesn’t take much to make this mom happy!

Wednesday, May 12, 2010

And now in postsurgical news....

Bun Bun (Sidney’s stuffed bunny) has gotten an extra workout this week. He has barely left her right arm since we came home from the hospital. This is typical for Sidney as he is never far from where she is playing and always with her while she is sleeping. She is doing incredibly well, considering we are less than a week out from surgery. We are giving pain medication at night only and have taken away the muscle relaxer. She responds well to Tylenol during the day, and she is not so groggy. It also helps her appetite which always waxes and wanes. I have never met such a fickle eater. I have been told by mothers of adopted children and mothers of biological children that girls have this tendency. I am unaccustomed to people not eating anything in our house that isn’t glued down. However, we know she has to be getting enough, because we measured her last night and she has grown 4 inches since we came home in July! Eli has grown 2 inches over the last year. He is so tall that this is actually a slowdown from previous years!

In my last post, I forgot to indicate Sidney’s distinct anger over her cast when she woke up out of surgery. She held the cast up and yelled, “no, no, no” at Tom and I. Who could blame her? When the nurse came close she actually scowled! Fortunately, the cast will be on a shorter period this time. Tom is also pleased the elbow of the full arm cast is at a better 90% angle. We are hoping this prevents another midnight drive to the ER!

Thursday, May 6, 2010

Syndactyly Reconstruction Round II


"For I know the plans I have for you." declares the Lord. "Plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tom, Sidney, and I are home from the hospital. Upon returning home, we were greeted by Jean, Jean the cleaning machine, or my mother. Eli was treated to grandma sleeping over last night, because we had to report to the hospital bright and early. We spent the night in Iowa City and enjoyed gyros we pick up when we are in town. She quickly whipped my house into shape, taking on Mt Mesuvius (our laundry pile). Eli was disappointed Grandma would not be spending a second night however was exicted he lost a tooth in school. Upon returning from school, he quickly produced the tooth from a film jar, saying “look mom, there’s even blood!”

We arrived at 6am for Sidney’s procedure. Like the last proceedure, Tom's dad sat with us. Tom and Steve are a hilarious combination, and on a day like this, I needed to laugh. By 7:15am, a very sedated Sidney was taken to the operating room. Our surgeon worked to reconstruct the bones and growth plates in her forefinger (on her hand, the middle of three fingers). Prior to surgery, Sidney’s forefinger  had two large circular masses of bone at the base, a very short bone in the middle, and a straight bone at the tip. Her growth plate is positioned around the two masses at the base of the finger, in the shape of a C, causing the finger to grow wider versus longer.

Bone was removed as well as one of the growth plates. This growth plate was replaced by a fat graft off of her upper arm. Skin was used from the same graft over an area which the doctor removed with a small amount of syndactyly or webbing. A skin graft from the hip was not needed, so the proceedure was much shorter than the last. Finally, a pin was placed in the end of her finger.
Our surgeon also took this opportunity to examine the hand completed in January. Her newly separated fingers are curling a bit as is the bodies natural tendency to go into their orginial position. She feels using a brace at night can correct the situaiton, however we will wait to do so until she is out of the cast. It doesn't sound like it will be a huge deal and a small thing to do to make sure they are straight. At this point,we are uncertain of what her hands will need surgically over the coming years. It is difficult to say with certainty, because her anomoly is so unique. Our surgeon advised, girls hands typically stop growing after the age of 15. 

Luckily our ride was uneventful after Sidney lost her lunch on the entrance ramp to 380. Poor baby. I guess taking the advice of the nurse and sitting in the backseat was a wise option. We were given a large plastic bucket with a lid for such an occasion. Dad was happy for the lid, as opening the windows is not a great option going down the highway. Tom can handle many things but puking is not one of them. Mom was cursing the medical system that thrusts people out after surgery so quickly, but I was greatly relieved when we got home and she began eating and drinking normally without issue.

We are once again in awe of what a day in the hospital has done to improve the quality of our daughters life. She makes it so easy. She is so brave and such a tough little cookie. It is a thrill as parents to watch her growing into her full potential.