Four stickers, two hotdogs, and many xrays later, we are home from three appointments at the university hospital. It is not typical that we have three appointments in one day. Our clinic does a phenomenal job of scheduling things together, given the distance we drive. My overly organized plan to leave early came to a screeching hault when the check engine light came on in the car as we left the driveway. This meant I got to drive Tom’s tank (manual work truck) on the 1 ½ hour drive and park it in the ramp.
Our first visit was a series of x-rays of Sidney’s entire body, verifying there are no other anomalies in her skeletal makeup. Sidney was less than thrilled about the scan which did not allow her to move. She asserted herself by telling the technician, “no, mama!” We were pleased to find only her foot and hands are involved, and everything else in her bone structure is normal. Genetics requested the test as part of its preventative work up along with an ECHO and renal ultrasound in the fall. She has no obvious clicks or murmurs, but we need to be sure everything is okay.
After the skeletal scan was completed, we had time to let the kids tear around on the equipment outside, in the hospital’s play area and eat lunch. My mom came along to help corral the kids since Tom is working 75 hour weeks, and Eli is out of school. Next we headed to the hand surgeon to look at the hand completed in May. This was to correct the shape of the growth plate. Everything looks fine. We will take a preventative approach by having a splint made for bedtime. We are hoping to keep the finger from curving again.
By the time we reached our last appointment in the orthopedics office, Eli and Sidney had reached maximum capacity. Eli is typically well behaved (I am not bias: -), however even he said, “get me out of this hospital.” Sidney alternated between lying underneath the paper on the exam table with her head on the pillow and singing. She has begun singing the same melody over and over; however we cannot understand what she is singing. To add drama, she adds facial expressions while singing. I told my mom she looks like she is ready for show choir. There have been other times when out of nowhere, she starts doing choreographed movements. This is nothing we taught her, so we can only assume she was taught this in the orphanage. Did I say my daughter is sweet?
This circus continued until the orthopedist made his way in. This was her 10 month appointment to check on her leg. Again, Sidney is missing her fibula bone (fibular hemimelia). Her leg is fine, and we will continue doing lifts. Typically, patients with fibular hemimelia have a foot, but it is not in good enough condition to use. Amputation is the route most families take. We are blessed that Sidney’s foot is fully formed, and she is only missing her pinkie toe. Let me take this time to tell you how missing a pinkie toe is life altering and makes a huge difference in her ability to walk and function, NOT!!! We also found out, she can take her shoes off and go barefoot as much as she wants. We were unsure if this would have an impact on her spine. Her orthopedist said, she will compensate, and it will not have an impact.
Today feels like a major milestone. Hands are complete, leg is fine, and the other tests we have to complete are preventative. I won’t try to sugar coat things, it was scary the first time we walked into the doctor’s office and the unknown. I am unsure how anyone goes into adoption without faith.
Monday, June 28, 2010
Friday, June 25, 2010
Had to include my favorite photo from vacation which I like to call "fun time's over."
As Eli discusses the reason for the “duck” in duct dape, I have a free minute to catch up with our week. I am not writing anything this week on contract, so you will have to put up with my frequent entries. This is a means of finding my sanity with Tom’s chaotic schedule. Heat advisories create a lot of broken equipment. With 16 hour days, our kids have not seen him for more than 5 min since Monday. They are both looking forward to the weekend and uninterrupted time with Dad. Mom is looking forward to having another adult around, as well as find a couple of hours ALONE! My good friend and neighbor is celebrating her birthday with the girls and has a couple of bottles of Moscato chilling.
Our hand therapist Kelly feels that we have been aggressive enough with ultrasound. From now on, we will do a combination of treating the scar with vitamin E oil three times daily and wearing a smaller splint. It differs from the other splint, because it wraps around the palm with the objective of keeping a plastic wrap over the scaring between two of her three existing fingers. A sticky substance works to reduce the scarring. She indicated scarring can develop for the next two years. Throughout this period, or beyond, we will work with Kelly to revise the splint.
Despite all of this, we are amazed at her ability to adapt from a developmental standpoint. She has been writing with a pen since she came home last July. This might be oversimplifying her ability, but she can do everything with her three fingers, on each hand, as a five fingered person can do. My dad taught her how to draw circles, and she continues to do so. Her favorite phrase is “I draw” or “write? “Everyday, we are hearing new words. We have yet to see any areas in which she is limited. An onlooker probably thinks she is a baby, given her size, but we know she is quite the opposite. She will definitely be ready for 3 year old preschool a year from this fall.
Eli is relishing in his summer break. He loves not being rushed, and I try not to overschedule him during summer. Being busy is great, but I want my kids to be kids. Not rushing between 50 activities, simply enjoying life as a kid. I am so proud of Eli. I am always a pround mom, but lately, a new side has emerged. He is so protective of his sister’s hands. When she goes to bed, and I come back downstairs, he always asks me if I remembered to put on her splint. He loves his sister, and I think growing up with a sister who requires additional medical care will only deepen his compassion as an adult.
On Monday, by coincidence, we have three doctors’ appointments at the university hospital. More on that note over the weekend. Time to find my kitchen.
Wednesday, June 23, 2010
Anniversary
As I sit down to write this, Eli is trying to convince me to buy one of his drawings for $10.99. I made a onetime deal for 2 cents, telling him there was something wrong with purchasing a picture, given I supplied the paper and markers. I can’t believe I am such a sucker. I told him never again.
In all my excitement to post the photos of our vacation, I forgot to mention we celebrated our 13th anniversary. Tom and I met in community college at a party. I was 19, and Tom had been trying to get my name all year. Crazy, I didn’t have a clue. We started dating, I left for South America 6 weeks later, and I returned to find him with a dozen roses. Three years later, we got married. Who could forget Tom’s moves on the dance floor? Makes me want to dig out the old video. If a person’s love of dancing meant they had moves, Tom would dance like John Travolta.
I was straight out of college, 2 months after getting married, we packed up our small house, or shall I say movers packed up our small house, and we headed for Chicago. I had a job there, and Tom was up for the adventure. On that topic, I will leave you with this thought. There were the same number of people the in our apartment complex as our small rural town.
As I write this, I am looking at Sidney’s splint. She continues to take it off. Before the day is over, we might have to tape it to her arm. It comes off Monday. We are anxious about going to the pool. Especially, on a day like today. There is a heat advisory, and we are cooped up together. Other than a few laps on the bike or puttering around the yard to water the flowers, it is too hot. Thank goodness for the air conditioned gym.
We continue going to the hand therapist in town for ultrasound on the right hand. This is the hand that was completed in January to eliminate the webbing between two of her three existing fingers. Our objective, in taking her to the occupational therapist, is to reduce the scarring and likelihood of the webbing growing back. It will probably not keep her out of surgery for the remainder of her childhood. Instead it will reduce the number of procedures as her hand grows. Our hand surgeon advised, typically the hand stops growing around age 15.
She receives ultrasound 2 times per week. This week she will receive three treatments, because we were gone on vacation last week. This will help to reduce scarring. In addition, I work vitamin E oil into her hand up to 3 times per day. This involves rubbing the oil in a circular motion. This all combats scarring. When working on the webbing between fingers we focus on the area where three flaps of skin came together, between the fingers. In addition, there was a skin graft, creating a ridge which extends to the end of her fingers. This all helps to flatten the raised scars.
Off to nature explorers today, hopefully the naturalist will not feed another mouse to a snake. I found the whole thing disturbing. OK, time to go and do something productive.
In all my excitement to post the photos of our vacation, I forgot to mention we celebrated our 13th anniversary. Tom and I met in community college at a party. I was 19, and Tom had been trying to get my name all year. Crazy, I didn’t have a clue. We started dating, I left for South America 6 weeks later, and I returned to find him with a dozen roses. Three years later, we got married. Who could forget Tom’s moves on the dance floor? Makes me want to dig out the old video. If a person’s love of dancing meant they had moves, Tom would dance like John Travolta.
I was straight out of college, 2 months after getting married, we packed up our small house, or shall I say movers packed up our small house, and we headed for Chicago. I had a job there, and Tom was up for the adventure. On that topic, I will leave you with this thought. There were the same number of people the in our apartment complex as our small rural town.
As I write this, I am looking at Sidney’s splint. She continues to take it off. Before the day is over, we might have to tape it to her arm. It comes off Monday. We are anxious about going to the pool. Especially, on a day like today. There is a heat advisory, and we are cooped up together. Other than a few laps on the bike or puttering around the yard to water the flowers, it is too hot. Thank goodness for the air conditioned gym.
We continue going to the hand therapist in town for ultrasound on the right hand. This is the hand that was completed in January to eliminate the webbing between two of her three existing fingers. Our objective, in taking her to the occupational therapist, is to reduce the scarring and likelihood of the webbing growing back. It will probably not keep her out of surgery for the remainder of her childhood. Instead it will reduce the number of procedures as her hand grows. Our hand surgeon advised, typically the hand stops growing around age 15.
She receives ultrasound 2 times per week. This week she will receive three treatments, because we were gone on vacation last week. This will help to reduce scarring. In addition, I work vitamin E oil into her hand up to 3 times per day. This involves rubbing the oil in a circular motion. This all combats scarring. When working on the webbing between fingers we focus on the area where three flaps of skin came together, between the fingers. In addition, there was a skin graft, creating a ridge which extends to the end of her fingers. This all helps to flatten the raised scars.
Off to nature explorers today, hopefully the naturalist will not feed another mouse to a snake. I found the whole thing disturbing. OK, time to go and do something productive.
Sunday, June 20, 2010
Vacation!
Grandpa Bob (aka BobBob)
Prior to my parent’s arrival, I had expectations of 2 days of carefree quiet relaxation. Tom and I both found, quiet brought a different surprise. Relaxing allowed us to mentally process all the last year has entailed. 3 years of waiting and 2 surgeries will do that to a parent. During all of this, we had the best time.
Lake Wisconsin is quite large. We have a small flat bottom which Tom’s dad gave him on his birthday. The purpose of taking it was to fish. Though I was not fond of Tom urging me to slug my coffee down early one morning, I was glad to have the time as a family, minus the ring of Tom’s work phone. Sidney loved helping to reel in the line. Tom was only jealous the day I thought I was caught on a weed and was actually reeling in a fish, two times! Eli was a fare weather fisherman and enjoyed taking in the wildlife around the boat. He hardly left Tom’s side the entire week.
Fishing also meant Tom cranking the motor while we screamed down the lake on our flat bottom. Any wake in the water was a bumpy ride! I took to sitting on the floor with Sidney. Sidney screamed on the first ride. With each ride, she gained confidence until the end of the trip when she was pointing and looking around, finally allowing herself to enjoy the experience. Of course it didn’t hurt that she was sporting her Dora the Explorer sunglasses. She loved the live well on Grandpa Bob’s (aka BobBob) boat. She is so gutsy. When we showed her a freshly caught fish, she reached out and stroked its scales.
My brother, sister-in-law, and nephew also joined us for a couple of days during our trip. Nothing was cooler than seeing Sidney playing on a blanket with our nephew, patting him on the head. She definitely is a nurturer. What shocked us was how gentle she was with him. Over the last couple of months, we have witnessed her hitting. This is not a sweet little tap but a conscious slap which is typically followed by laughing. Typically a parent can quickly reprimand a child of 2 who does not completely understand their wrongdoing. Sidney’s actions are deliberate. This is a reality of her time in the orphanage and something that continues to improve over time. Typically, it comes out when she is really tired, and we try to avoid her becoming too tired before laying her down.
On a medical note, Sidney only has a couple more weeks and the splint comes off. This means we are free with the exception of physical therapy on the hand which was completed in January. Ultrasound is being used on the newly separated fingers to prevent the webbing from coming back. A majority of this preventive work comes from a splint and a plastic mold which separates her fingers at night. Whatever is in the plastic works to break down the scar tissue. Two or three times per day we work on the scars by rubbing vitamin E into her scars. We go back the end of next week to get rid of the splint. We are very excited!
Monday, June 7, 2010
Each Day’s a Gift
I am exhausted and tired but a good exhausted and tired! We spent the majority of the day Saturday cleaning and trying to organize ourselves for our upcoming vacation. Part of the day, we spent out in the country for a birthday party. My good friend’s twins had a large party. My kids had a great time running around outside. What a treat to be in a place, as a child, where you will not get yelled at for doing anything outside of asking for more candy.
Sidney spent the drive home mumbling, in and out of tears, “slide, slide, slide.” This crabbiness takes on a different tone for Tom and I. We think of the meek, shy child, we encountered in July. This is the same child who barely had the courage to lay her head on our shoulder until a month after she came home. No, the title of the blog does not refer to the gift of hearing her carry on but the gift of finally seeing her carefree. Giggling as her two foot frame was able to outrun mom across the grass, smiling ear to ear as we said “teeth,” while she hammed it up for a photo, and finally her courage going up to the mules used for rides without batting an eye.
After a day like today, when sugar consumption is high and naptime is low, I also watch the dynamic between brother and sister. Sweet play turns to carrying on and all out fighting. If you think Eli’s tall frame is any match for the 19 pound wonder, you’re wrong. Yes, her personality has taken new turns in the past few weeks. She has gone from quietly, sweetly playing, to loudly declaring her place in this family. She is acting like a normal 2 year old, and it’s great!
Tuesday, June 1, 2010
Summer Hiatus and Splinted Hands
We are on the second official day of summer break. “The routine” is a stay at home mom’s only method of survival. I need predictability as much as the kids, so we are quickly trying to find some kind of rhythm. After about 9am, they both start getting crazy, and my coffee has kicked in. Eli has joined Sidney and I on our morning walk or forced march as I like to call it. I also shuffle him out the door at every opportunity, to keep him from going nuts inside. We are waiting to go to the pool on a night when dad is home. Sidney cannot get in until the splint is gone from her second surgery, in three weeks. Eli has remained calm about it so far, but I can tell it is a bone of contention.
We had our first physical therapy appointment, to work on the scar tissue which typically develops after syndactyly is released. Sidney’s first surgery, in January, restructured two webbed fingers. This procedure requires a skin graft, and the scar tissue became quite dense. Our objective is to eliminate this from occurring. This will either prevent surgery down the road or the need to correct the area as quickly. It is her body’s natural inclination to form webbing, in the same area surgery took place.
I will work Vitamen E oil into the sides of her corrected fingers two or three times per day. We will also visit the physical therapy office two times per week for ultrasound treatments on her hand. This will aid in softening the tissue. She will wear a splint at night. She is already splinted from the second surgery which was completed last month, on the left side. She will have a splint on each hand until we are released from the splint in three weeks, on the left side, from the second surgery. I have never been so happy she has working thumbs which are not restricted by the splint. In the coming months our visits will become less and less. When the scar tissue is where the physical therapist is comfortable, we will splint at night and during naps. Eventually, the number of visits will be reduced.
Kelly, our physical therapist, is someone I met in a mom’s group I attended before Sidney arrived. There have been many things that have fallen into place. Kelly’s specialty is hand therapy. If I went into all the things that have coincidentally fallen into place, it might be unbelievable. Of course, Tom and I know it was not mere coincidence.
In the midst of all of this, Tom is working day and night. Memorial Day was great, because he had a couple of days away from the cell constantly ringing. He could have worked all weekend, but we needed family time. Spending time at his dad’s cabin on Sunday was welcome relief. We have an LLC, in addition to his work with his normal job, allowing him to do work in the evenings. This was how we saved money for the adoption. Unfortunately, much of this work came from homes which were flooded a couple of summers ago. Now, regular work has taken off. He does almost all of this with his dad. I have been lucky enough to be in Tom’s life for 15 years, and I know that during busy times, he has to work. It is the nature of the business. In two weeks, we will go on vacation, so the push is on.
OK, off to break up a wrestling match. Eli is telling me, “I’m not even hurting her. I am practicing something like the WWF where everything is fake.” Where does he get this stuff?
We had our first physical therapy appointment, to work on the scar tissue which typically develops after syndactyly is released. Sidney’s first surgery, in January, restructured two webbed fingers. This procedure requires a skin graft, and the scar tissue became quite dense. Our objective is to eliminate this from occurring. This will either prevent surgery down the road or the need to correct the area as quickly. It is her body’s natural inclination to form webbing, in the same area surgery took place.
I will work Vitamen E oil into the sides of her corrected fingers two or three times per day. We will also visit the physical therapy office two times per week for ultrasound treatments on her hand. This will aid in softening the tissue. She will wear a splint at night. She is already splinted from the second surgery which was completed last month, on the left side. She will have a splint on each hand until we are released from the splint in three weeks, on the left side, from the second surgery. I have never been so happy she has working thumbs which are not restricted by the splint. In the coming months our visits will become less and less. When the scar tissue is where the physical therapist is comfortable, we will splint at night and during naps. Eventually, the number of visits will be reduced.
Kelly, our physical therapist, is someone I met in a mom’s group I attended before Sidney arrived. There have been many things that have fallen into place. Kelly’s specialty is hand therapy. If I went into all the things that have coincidentally fallen into place, it might be unbelievable. Of course, Tom and I know it was not mere coincidence.
In the midst of all of this, Tom is working day and night. Memorial Day was great, because he had a couple of days away from the cell constantly ringing. He could have worked all weekend, but we needed family time. Spending time at his dad’s cabin on Sunday was welcome relief. We have an LLC, in addition to his work with his normal job, allowing him to do work in the evenings. This was how we saved money for the adoption. Unfortunately, much of this work came from homes which were flooded a couple of summers ago. Now, regular work has taken off. He does almost all of this with his dad. I have been lucky enough to be in Tom’s life for 15 years, and I know that during busy times, he has to work. It is the nature of the business. In two weeks, we will go on vacation, so the push is on.
OK, off to break up a wrestling match. Eli is telling me, “I’m not even hurting her. I am practicing something like the WWF where everything is fake.” Where does he get this stuff?
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).
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).
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