Monday, December 24, 2007

Happy Christmas

Well, my cards are ready to go, but this blog will serve as my letter for 2007. So much has happened in the past year, I'm not even sure where to begin. I guess the biggest is that at this time last year I had just received Pre-Approval to adopt Li, Xiao Mai - an orphan from Xiamen, Fujian Province in the People's Republic of China. Lucy (Lucille XiaoMai) has now been home for over 5 months, and we are settling into life. She is an amazing little girl, with a huge sense of humor, a ready smile (except for Santa) and a finger at the ready to point out all the things that her sisters should not be doing.

Lucy is doing well health wise. She had surgery in China for a heart condition known as VSD - ventral septum defect - a whole between the lower chambers of her heart. She'll be monitored her whole life, but it should not cause any reason for her not to do whatever she wants to do. And she is definately taking that to heart!

Ella has started kindergarten, although sometimes this little 6 year old of mine seems like she is 26 instead of 6. She is bright, articulate, and thoughtful. She is a ray of sunshine for me on the tough days, and makes me smile no matter what is going on. Ella still struggles with not being the youngest any more, but loves her little sister, and is a great role model. Matter of fact, today Lucy dressed herself with Ella's help for the first time! Ella is healthy, although we found out this past fall that she is a Thalassemia Type B carrier - not a big deal, but she will need to deal with genetic testing before having kids. She has promised me not to get pregnant and have children until she is very old - like me - at 40 or so... Great.

Gwenn is now in 3rd grade, and is going to be 9 years old this spring. This year has been a busy one for us. Last year was sort of a wasted year at school, and so this year I'm working hard to be sure that we've identified all of the issues that are going on with my little sweet potato. She is such a sweetie, but she is definately the one that makes me the happiest, but also the most frustrated. Besides her SPD (Sensory Processing Dysfunction) we know that she also has a slew of other things she has been diagnosed with - RAD, OCD, ODD, LBLD, CPD, APD and more. My goal is to get her whatever help is the best so that she is a happy adult. She is amazingly bright and such a good kiddo, and it's hard to see her struggle - in school, with friendships, and in activities that she wants to do.

As for me, I'm extemely grateful for my three amazing children. No one could have prepared me the challenges, but the extreme thanks that I feel each day when I watch my children grow. My job continues to be a bright spot - I'm so lucky to have found such a great employer as Microsoft, and I contstantly am challenged to learn new things, and push myself to new limits. I also have had the honor to start an adoptive parents group that is really taking off - and that has been a lot of fun. I'm now President of Families with Children from China NW. We are having growing pains and it's been a challenge in determining how to get through them all and bring the organization out on the other side, stronger and more vibrant.

Well, I've promised the girls to head to bed before midnight so that Santa can come, and I'm not one to get in Santa's way. The girls left him cookies and milk, and I left him a glass of wine. We'll see which he prefers. Since he's been going for a long while, and we are one of the last time zones, I'm putting money on the wine...

If you click on the picture, it should be hyperlinked to the Norad site where you can view video of Santa on his rounds...

Happy Holidays and Merry Christmas!

Tuesday, December 18, 2007

Birthparent searches

NY Times article on searching for birthparents is interesting. It is one of those interesting things - to search or not to search.

When I first adopted internationally, it was attractive - not knowing who the birth parents were. But now that I've adopted 3 times, I think it's the hardest part.

Two lives emerged from the ashes

Great article in the LA Times on the book "Saving Levi", which I read recently. Lisa Bentley works with the Philip Hayden Foundation, which I have donated to for a few years. Great read - both the article and the book!

By John M. Glionna, Los Angeles Times Staff Writer December 12, 2007

Levi Bentley at age 4 in Langfang, China. He is standing in the field where he was found when he was about 6 weeks old, so badly burned that he wasn't expected to live. Lisa Misraje Bentley was a bored U.S. homemaker when she reluctantly went to China with her family to open an orphanage. A charred baby boy would change everything.

BEIJING -- Lisa Misraje Bentley watches the boy in the No. 8 jersey as he careens across the soccer field and she marvels. His lower face a mask of scar tissue, his left arm gone at the elbow, the toes on his left foot missing, he zigzags along the green grass in defiance of his disabilities."Isn't he happy?" she says. "Look at the joy coming out of him!"

Bentley knows the boy probably should not be alive. Five years ago, he was left for dead in a cornfield, his tiny body so ravaged by fire that the villagers who found him thought he looked more like a charred log than a 6-week-old baby.

Back then, Bentley was new to China. She had come begrudgingly with her four children, following her husband, John, from Washington state. Together, the couple founded a Christian orphanage for special-needs children -- those most at risk in the Chinese child welfare system, which often lacks the resources to meet the demands of the disabled.

They wanted to help the undesirables. And when Bentley first saw the abandoned baby, gasping for breath inside a hospital incubator, she knew she had found perhaps the most undesirable one of all.

What happened next would test the limits of modern medicine and put Bentley in conflict with local customs, laws, national bureaucracies and even her own family.

Who could have predicted the impact of one small life in China on a bored suburban homemaker from the Pacific Northwest?

Six years ago, Bentley sat in her four-bedroom home in Vancouver, Wash., and felt like crying. As a stay-at-home mother, she lived the good life: Her husband was a successful lawyer. She was pregnant with her fourth child. There was the minivan and the sports car. Yet she was miserable."I thought, 'If this is my life, this stinks,' " she says.

Then came an opportunity. John always had a fascination with China, and had seen his brother start a Christian orphanage in Africa. He wanted to start one in Beijing. Assured financial backing for one year by a Christian philanthropist, John quit his job and prepared for the journey.

Suddenly, the support fell through, but John still wanted to go.Bentley wasn't so sure. She wanted adventure, but China was like another planet. She had no Chinese language skills, and had always had a Woody Allen-like obsession with hygiene. China was no place to take four young children.

"I thought John was insane," she says. "But I said, 'OK, three months.' Then I figured I'd raise hell and we'd come back."

The family's first image of China didn't help. As they landed in Beijing, Bentley's 8-year-old daughter, Emily, looked out the plane window and remarked, "It looks like a trash can."

The couple settled in Langfang, a rural town an hour outside Beijing, and rented a concrete-block home without heat. Bentley remained a mother on guard, listening for the rats that scampered inside the building walls. Both she and John took jobs at a foreign-run orphanage.

No matter how hard she tried to comprehend the culture, China remained mysterious. She had run-ins with local hospital staff and officials, who considered her another pushy American. Bentley didn't fit the image of a Christian aid worker. She's hip and outspoken, likes '60s clothing, and doesn't come on strong with Bible-speak.

She didn't connect here, and she wanted to go home.

The ghastly discovery came on a dreary March day in 2002: A badly burned baby was found in a field. A cluster of curious villagers encircled the infant as he wailed in agony.

The baby's bright yellow jumper was soaked with blood and body fluids. Someone had carefully tucked a 10-yuan note -- less than $2 -- into his pocket.

One by one, the crowd drifted away. What could be done? The baby was sure to die. Except one old man. He saw that the infant's head had been shaved and a bandage remained where an IV had been inserted.

A desperate mother had no doubt tried to save this child and then, in defeat, abandoned him. The old man understood why: This no longer looked like a baby. He reached down. The infant was so charred that ashes fell when he tried to lift its left arm. The little hand was blackened, clenched.

The old man gathered up the baby and rode his bike to a local government office. He left the infant on the doorstep. The boy was rushed to a hospital, diagnosed with third-degree burns over 70% of his body. The orphanage was notified.

When Bentley arrived, she looked down inside the incubator. What she saw "grabbed me by my heart." The baby wailed in agony as he tried to suck his badly burned thumb -- his wounds so deep Bentley could see muscle, tendon and bone.

"This child had no mom, nobody pulling for him," she says.

Just then, Bentley recalls, the baby's eyes flickered. He looked right at her, expectantly, as if to say, "Are you my mother?"

Then Bentley made the decision that changed everything. Ignoring conventional wisdom limiting the jurisdiction of a foreigner in a strange land, she assigned herself as the child's advocate. Doctors discouraged her. They had never seen anyone so badly burned. No matter how much time and money she spent, they warned, this boy is dead.

Bentley named the boy Levi. She liked the sound of it. Later she learned the word means "to bind and unite." She liked the sound of that even more.

Levi's first surgery was a success. Doctor's removed part of his left arm and performed numerous skin grafts. But days later, infection set in. They operated again, taking more of his left arm. There would probably be more amputations.

Bentley flinched. Levi's scarred face and body were bad enough. She felt as though she was losing him limb by limb. That's when an orphanage colleague told her of an e-mail from a Boston surgeon. When told of the burned orphan, the doctor had offered to come to China. Bentley wanted more. Why not take the baby right to physicians at Boston's Shriners Hospitals for Children, where they could use their own equipment in their own surroundings?

She began a race to accomplish something others considered foolhardy: getting a dying, undocumented Chinese baby into the United States. She hadn't even registered Levi's hukou, or permanent residence, with Chinese authorities.Such documentation takes months. Bentley had days, if that. Chinese doctors were preparing for another surgery, perhaps to amputate the boy's remaining hand. She had to act fast. With the help of orphanage staff, she began a telephone and e-mail campaign aimed at foreign charities here and government offices in China and the U.S.

With each call, she learned a little more about how things get done in China. Hardball was out. She had to use connections, or guanxi, with people who were sympathetic to the boy's plight."I couldn't go in as the pushy American, become too highly emotional," she said. "In the U.S. that works. Go in, be the tough bitch, get what I want. That did not work here."

Friends donated baby clothes. Strangers who encountered the boy opened their wallets. People who knew people in power offered to make calls."

Lisa has this innocence, this naivete, about her that gets things done. People want to help her," said Melody Zhang, associate director of an adoption agency called Children's Hope International. "She's not good in dealing with government. Sometimes she has no idea. But she ignored everything for this boy. She had this connection with Levi, a mother's love as strong as it could be."The bureaucratic waters began to part. Levi was granted a hukou. He was issued a passport, and then a U.S. visa. Bentley's cold calls resulted in a free flight for her and the baby.

At home, the situation was not going as well. John felt Lisa was neglecting her family. She wasn't seeing the big picture.The two bickered. Colleagues in the Christian community took notice and began to whisper. "It became a problem for our marriage," John recalls. "Nannies were raising our children. We had 25 other kids at the orphanage. This was just one child."The tensions would eventually lead to talk of a divorce. But Bentley couldn't stop. With $50 in her purse, she boarded a plane for Boston with a baby still bleeding fluids.

Levi approaches a stranger in his kindergarten classroom."I only have one arm," the 5-year-old says cheerfully. "Will you tie my shoes?" He points to his left foot. "This one doesn't have any toes."So far, he has endured more than 20 surgeries, with more to come. As he grows, scar tissue rips and bleeds and must be removed. His left ankle remains bent at an odd angle.

Sometimes, children taunt him, holding out a crooked arm, saying, "I'm Levi!" Some don't want to sit next to him. People stare.But he perseveres with the help of his mother's discipline. She treats him just as she does her biological children or his fellow adopted sibling, a Chinese-born girl named Orly, who's 9. When he falls, he gets up by himself.Slowly, this rambunctious boy is developing a sense of self. He likes dinosaurs and singing his own rap lyrics. A recent self-image shows him as he is: a boy with a missing hand and toes. He even drew the scars.

There are setbacks. In Texas for surgery to create fingers on his right hand, Levi told the doctors he was a big boy and wouldn't cry. His mother had warned him the surgery would not produce perfect fingers, but she knew he hoped it would."When they removed the bandages, they were raw and stubby, not like mine," she says. "I saw his eyes. I knew his heart shrunk."She knows his most difficult days, emotionally, are yet to come, "when he falls in love and physicality becomes an issue." It is pain even a vigilant mother cannot prevent.

And today Bentley is emotionally and legally his mother. Levi was officially adopted in 2006.Lisa and John worked on their marriage, taking a year's leave of absence to return to the U.S. for couple's therapy.Not long ago, they faced a dilemma: If they didn't return to the U.S. immediately, the Bentleys risked losing their home and cars to repossession. They stayed put. China was home now, and their work with orphans was too important to abandon.Now, life in the U.S. suburbs seems like the other planet. They run their own Beijing-area foster home, Harmony Family House, with a deaf school to help poor Chinese mothers cope with raising special-needs children. Bentley calls these mothers heroes.

The circumstances behind Levi's injuries remain a mystery. But Bentley doesn't blame the mother. "I believe it was a terrible accident that befell a poor mother without resources," she says.She produces a tiny yellow bootie, part of the outfit she calls Levi's burial clothes. "How can you condemn her? She did what she could for her baby. Then wrapped him up and left him to die peacefully. Imagine how hard that must have been."

For years, Bentley was hard on herself, thinking she was never good enough. That's changed. At 43, she accepts who she is, the kind of kooky redhead who dares to be different, who knows it's all right to stand out either within the Christian community, back home in the U.S. or even here in China."I'm no longer afraid to say, 'This is the way I am.' I'm not trying to hide anymore," she says. "For the first time in my life, I'm comfortable in my own shoes."And a little boy no one else wanted made that happen.This year, she published a book on her experiences. It's called "Saving Levi: Left to Die . . . Destined to Live."Bentley knows the boy wasn't the only one who was saved.

BBC Photo Essay

BBC News has a great photo essay on life in a Guatemalan Orphanage, Asociacion Primavera Children's Home. I wonder how often these kiddos are at risk due to trafficking and when they are not - and if they are not, it's a shame about the slowdown - but they should eventually make their way to adoptive homes if everything is above the board.

Monday, December 17, 2007


Well, we had Santa pictures this past weekend - and it was a load of fun. Lucy wanted nothing to do with the old man, and was not sure why I made her stand with him. Ella tried to comfort Lucy and tell her it was okay, and Gwenn took advantage of the time, and talked for 10 minutes about all the stuff she wants.

In the end, we got some cute pics of the girls - although Lucy was a tough nut. Her brows stayed furrowed until we were all done. Once she walked away she turned around, gave a winning smile, and said "bye-bye" to Santa and the photographer. That's my girl.

Friday, December 14, 2007

New Newsweek Article on China Orphanages

Well, here is quite an extensive article from Newsweek on China's orphanages. It's a nice human interest story, and a nice look at how many orphanages now run...


Well, there is an article on Yahoo today about a dutch family who have relinquished custody of their 7 year old daughter (adopted from South Korea) for aparently no better reason than I can read than because they now have biological kids. They should be arrested and jailed for abandonment. And, since it is a diplomatic family, shame on the Dutch government for not firing this guy and sending their butts to jail somewhere.

Wednesday, December 12, 2007

Life on the street: Cairo

Very interesting article on young girls on the street in Cairo. Traffiking is such a huge issue, and I'm not sure when folks will deal with it.

Newsweek: Give me a BREAK

OK. Newsweek just published this amazingly horrid sounding article: When Adoptions Go Bad. The tone is negative, and starts out with a parent killing their adoptive child. What they didn't share is that most of what is listed in the article is actually symptoms of Reactive Attachment Disorder. It was disappointing to say the least that instead of talking about a serious subject, it was treated like FOXNews with the sensational story.

I'm going to need more time to think about this...

Tuesday, December 11, 2007


Well, it had to happen at some point. The girls have webkins, and I have now activated their accounts. To be honest, it's kind of cute - and just as addictive as I heard other parents tell me it is. I've now racked up a ton of points for each of the girls, before we even get on. Stunning. I'm glad I'm putting my time to good use...

Monday, December 10, 2007

Medical Updates, while we are at it...

Since I'm in here, we have lots of medical updates to share.

Lucy: Now that we have confirmed that she is 6-10 months younger than her paperwork states, we need to get a full cardiac work up. Except that Childrens hasn't opened it's schedule for 2008 yet - so each Monday I get to call and wait on hold, hoping to find out if the calendar is open. Finally today I got through and have an appoinment for late January.

Ella: Ella has now been officially diagnosed with Thalassemia - an inhertited, genetic blood disorder that causes chronic anemia. In her form, she has inherited from only one parent, which is very, very good. However, she will need to confirm that her S.O. is not also a carrier - the version from two parents is devastating. Worse case, she can adopt - which she tells me already she wants to do. Learn more at:

Gwenn: Gwenn, Gwenn, Gwenn. How much to say here. This week we have her MRI scheduled at Childrens. Next month is the full neuropsych eval and her VEEG at Childrens. The social worker with the pediatricians office is also working on a care meeting with all of the folks involved - pediatrician, neurologist, neuro-psychologist, speech therapist, occupational therapist, regular therapist, etc. Gwenn has also been dismissed from the counseling at the Kindering Center that we were taking advantage of. They believe that she is dealing with attachment disorder, and so we have a re-evaluation with Attachment Center NW next week. She was seen there just about 2 years ago, and they thought nothing was going on. However, the same issues are still here and amplified, and since the counselor has recommended, they are going to evaluate her again.

Some of you have asked to learn more about Sensory Processing Dysfunction, and other related issues... you can learn more at some of these places:
Eide's Neurodevelopmental Blog
Developmental Trauma Disorder
Attachment Center NW
Families for Effective Autism Treatment
Great list of books about SI

Lara: Still sound like I'm about to hack up a lung. Cannot WAIT for this to be done.

We're back

Well, I can't say that the break has been enjoyable. I'm just finishing my 4th round of antiobiotics for some nasty bronchitis that won't go away. I still sound like I've walked off of a 1950's TB ward, and feel like I've been sucker punched in the chest. But, I'm getting better...
So... what have we been up to, besides listening to me cough?

Cheerleading has ended. Gwenn accepted trophies for both herself and Ella, since Ella was sick that weekend (that is what started it all).

Halloween occured - and we were very successful in the candy department this year. The girls loved dressing up, and it took Lucy only one house to figure out what the deal was about. She ran at full steam from house to house, yelling "tree" (she can't say treat yet) and getting candy. All in all, it was a good day... Viivi also carved her first pumpkin, so that is big stuff!

Lucy continues to grow and suprise us all. She is getting more hair, loves to talk on the phone, and has learned how to undress herself. All in all, she is keeping her mom and sisters very busy!

And, Lucy has continued to rage - although not like she did in China. Now, it's mostly a 2 year old thing, and we are having fun when she gets into it. This episode was sparked by Ella not wanting to hold Lucy's hand during dinner (Ella's hands were busy putting food into Ella's mouth...)

The "big" girls and I went to see Disney Princess on Ice Tour. It was very special - we joined the hundreds of other little girls in their princess costumes heading to Key Arena for the skating. It was a very nice, expensive, Disney kind of night. It's amazing how well they know how to tap into our pocketbook. I need more marketing lessons from them!

Wednesday, November 7, 2007


I've been sick for the past 2 weeks, and am just starting to get well. More coming soon, I promise!

Thursday, October 25, 2007


Reactive Attachment Disorder is often diagnosed as other issues...Kiddos will often have many of the symptoms, but not all of the ones listed below...

Superficially engaging and charming
Poor reciprocal eye contact
Little conscience or empathy
Lacks genuine affection for others
Randomly affectionate with strangers but not with parents
Does not smile in return for another's
Destructive to self and others
Involved in fire setting and other property damage
Cruel to animals
Steals and lies about the obvious ("crazy lying")
Poor impulse control (acts hyperactive)
Significant learning delays
Behind in emotional and social development
Poor cause-and-effect thinking
Abnormal eating habits (gorges or hoards food)
Few and poor peer relationships
Preoccupied with gore
Chatters nonstop and asks nonsense questions
Extremely demanding or clingy

1st Lost Tooth

Ella lost her first tooth today. Very big deal, quite traumatic, and thankfully she has recovered. There were many tears, but thankfully oragel works just as well on loose teeth as it does on new teeth for baby sisters. We numbed up the tooth, and I got to quick pull it out. It took all of 3 days to go from "just loose" to out. That's efficiency. If I told Ella that it was supposed to happen in a day, she'd probably will it to happen that way.
We are now awaiting the tooth fairy. We had quite a discussion about how the tooth fairy knows which child lost the tooth, but then when we realized that she could see who was missing a tooth, it was a lot easier.

Wednesday, October 24, 2007

Costumes arrive

It's like a completely sanctioned time to escape and pretend to be someone else. Except that we get to do it whenever we hit the dress up closet. Our Halloween costumes arrived this week, and everyone is giddy with excitement over the upcoming sugarfest. The new costumes have also ushered in a whole new discussion around "what will I be when I grow up". Current favorites are:
  • Ella - ballerina princess doctor
  • Gwenn - scientist
  • Lucy - no preference expressed, except for liking to pick her nose...
This weekend we get to test drive the costumes at parties. The girls are pretty excited about them, but have been floundering between the current choices and prior year choices - so they can save the best (aka - newest) for the big night. Here is a sneak peek...


Yesterday, full-fledged Hillary mania swept through campus. People cheered, no one jeered, men and women alike wept tears of joy at her arrival. What does this mean? Political season is in full force at work.

I arrived early and was rewarded with rock star seating- 2nd row, on the center aisle, literally right in front of Senator Clinton. It made for great photos and being able to see what was going on. I have to say, I have other candidates that I like who are running, but I was very, very impressed with Hillary. After yesterday, I no longer have any doubts that she could effectively lead the country, and I could support her if she gets the nomination. That's not saying I've committed to her prior to the nomination - I want to hear from from Obama and Edwards before I go that far - but I really enjoyed hearing her speak, and found that she was realistic, somewhat pragmatic, and still had some very cool, unique things to say.

About 2 weeks ago Ron Paul was here - that funky republican candidate. He, too, had some pretty interesting ideas, although for much of what he believes it is too far out in right field for me to take him seriously, but it's still good to listen. Both he and Clinton had a similar idea in one area, which is work with a coalition, and find the best person for the job regardless of party affiliation. I like that.

Monday, October 22, 2007

Implications of a new age

So, the full effect of Lucy not being 30 months old is finally sinking in. When I think about it, there are two things that come to mind on how this may have occured. Either it was not thought out - someone with many files dropped them, and put them back together in the best way possible - but aligning Lucy with the file of an older child. This seems improbable, as I would have still received the child of the paperwork, and scratched my head over how much she may have changed from her photo.

The second option is that there was something done on purpose. My best guess would still be watching out for Lucy - another, older, cardiac patient (about 6-10 months older than Lucy) didn't survive their surgery, and to expedite Lucy and her adoption her file was associated with the child who didn't survive, and she was attached to the other file.

The biggest impact came to me over the weekend - if the files are fiction, then she needs a full cardiac work-up, since I don't know the status of her heart, since the paperwork is not accurate. So, off to Children's again to try and figure out what is going on. It makes a lot of sense, since they think they found an ASD when her heart was being checked after we returned, and it wasn't listed in her file.

Friday, October 19, 2007

Pumpkin Patching it

We had a great trip to the pumpkin patch. thankfully, there were no repeats of last years ER visit when Ella suffered an allergic reaction to Remlinger Farms. Equipped with our EpiPen Jr. we headed out, and had a great time. Lucy was confused by what on earth we were doing out there, but finally got into things...

Wednesday, October 17, 2007

The verdict is in...

Receieved the bone scan information late yesterday. While not completely conclusive, it is still in line with other estimates. Her hand "scored" out at 2 years 0 months, while her knee "scored" out at 1 year 8 months... Granted there is a plus/minus of 4 months, but that would put her 20-24 months - just like the pediatrician and Kindering Center both guessed.

Now I just have to determine a birthdate.

Tuesday, October 16, 2007

Updated age for Lucy coming soon!

Lucy has now had her pediatric evaluation - and they do believe that she is probably 6-7 months younger than her paperwork states. The developmental evaluation at Kindering Center put her anywhere from 5-9 months younger than her paperwork, and now we are waiting the outcome of her bone scan.

The bone scan isn't much more than 4 x-rays - of the hand, elbow, knee and foot. From that radiologists can magically determine how long a body has been growing on this earth. Hopefully it will give us an indicator if she relly is younger so that I can start a decision about her age change.

Monday, October 15, 2007

Gotcha Day - 5 Years

I can't believe it, but today is 5 years since I was able to take my little sweet Ella into my arms! Hard to believe - this weekend we will have a gathering of the families that I travelled to China with. What an amazing group of people that I went with - and all have the most fantastic children.

Well, Ella was 11 months old, and she will be 6 next month. It's so amazing how fast this time has gone, and what an amazing girl Ella has grown into.

Sunday, October 14, 2007

Sensory Processing Dysfunction

So for the past 3+ years I have been chasing down issues related to Sensory Processing (or Integration) Dysfunction in my oldest daughter. Although she was only 10.5 months old when adopted from China, effects of institutionalization can still be seen. Mostly because our everydays have been overwhelmed with effects from Sensory Processing and being placed on the autism spectrum.

Here is what the SPD Network says about sensory integration dysfunction:

Sensory Processing Disorder (SPD) is a complex disorder of the brain that affects developing children. These children misinterpret everyday sensory information, such as touch, sound, and movement. Some feel bombarded by sensory information; others seek out intense sensory experiences or have other problems. This can lead to behavioral
problems, difficulties with coordination, and other issues. Children with SPD are often misunderstood and labeled as aggressive or clumsy. They often are socially isolated and have trouble in school. Effective treatment is available, but far too many children with SPD are misdiagnosed and not properly treated.

Children with Sensory Processing Disorder (SPD) may suffer from anxiety, depression, aggression, or other behavioral problems. They may have problems with motor skills and other skills needed for school success. They may also be socially isolated and suffer from low self-esteem. Often they get a reputation for being a "difficult child."

These difficulties put these children at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, a poor self-concept, academic failure, and being labeled as clumsy, uncooperative, belligerent, disruptive, or out of control. Parents may be blamed for their children’s behavior by people who are unaware of this "hidden handicap."

School has been a real education. As you can read, kiddos with SPD often have a hard time at school and are labeled as "difficult" children - that has certainly been our case. Often I get letters home complaining about "behavior" issues - like not being able to sit still - that are not behavioral based, but directly tied to the SPD. Managing through the IEP and teachers is tough at best, and we have a school that does not believe in these issues. Unless the child is in a wheelchair or with another visable physical disability, there is no reason for them to have issues... Yikes.

Friday, October 12, 2007

Wednesday, October 10, 2007

More info on Mito

My friend Lorna posted this on her site, and it is very interesting...

This information is pulled from

Mitochondrial diseases are a group of progressive metabolic, often neurological, disorders that result from defects in the mitochondria, which are in almost every type of cell in the body. Mitochondria are responsible for creating more than 90% of the energy needed to sustain life and support growth. Mitochondrial failure results in energy deprivation within the cells. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the affected person's life is severely compromised. The disease primarily affects children, but adult onset is becoming increasingly common. Diseases of the mitochondria appear to cause the most damage to organs requiring high energy levels including: brain, heart, liver, skeletal muscles, kidney, eyes, and the endocrine and respiratory systems.

Mitochondrial disorders are notorious for not following a set pattern. It is not uncommon for patients to first be misdiagnosed with another disorder. Symptoms can begin at any age. Depending on which cells are affected, symptoms may include: loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays, autism, and susceptibility to infection.

Mitochondrial disorders are not always physiologically obvious. Intelligence can range from gifted to profoundly retarded. Children with fewer affected mitochondria may be mislabeled as lazy, uncooperative, or underachievers. At the beginning of the school day, for example, they may appear energetic and focused. But as the day progresses, their small reserve of energy evaporates and they are unable to complete the same tasks as their classmates. These children may also be labeled as mildly retarded because of their slowness, when in reality they may be merely fatigued.

There is no one identifying feature of mitochondrial disease. Patients can have combinations of problems whose onset may occur from before birth to late adult life. Typically, the earlier the onset of symptoms, the more severe the disease. Symptoms can be progressive and may include, but are not limited to, combinations of the following: seizures, developmental delay, regression, movement disorders, migraines, strokes, cardiac problems, hearing deficit, eye muscle dysfunction and visual loss, diabetes, GI problems, temperature irregularities, fatigue, failure to gain weight, mental retardation, autism, behavior problems, and dementia. Siblings with the same defect can have differing levels and types of symptoms.

Treatment and Mortality
At present, there are no cures for mitochondrial disorders and no truly effective treatments. The goals of current treatments are: to alleviate symptoms, and to slow down the progression of the disease.

General therapies often include supplements such as CoQ10 and vitamin "cocktails" which may enhance enzyme activity within the mitochondria, and act as antioxidants. Effectiveness of such treatments is largely anecdotal, noticeably helping some and not others. As a rule, those with mild disorders tend to respond better than those with severe disorders. While effectiveness may not be definable, these treatments may delay the progression of the disorder.

Prescription medications may also be necessary to control such symptoms as seizures, heart irregularities, and secondary diabetes. Physical therapy, speech therapy, and other types of therapies may also be utilized.

Some typical considerations regarding treatment of mitochondrial patients include the following:
• Standard therapies for specific symptoms may be necessary.
• Dietary - some mitochondrial patients may be on strict diets; others may not. Avoidance of fasting is critical; small, frequent meals may be necessary. Patients with GI and swallowing difficulties may require gastric tube feedings.
• Vitamins and supplements are usually prescribed.
• Treatments must be tailored to the individual, often resulting from trial and error by the physician.
• Avoidance of physiologic (external) stress factors. Those with autonomic symptoms (inability to control involuntary functions such as temperature control and heart rate) may require a more controlled temperature environment. Over- or under-heating may trigger a medical crisis.
• Avoidance of exposure to illness - even minor acute illnesses, such as colds, may cause a medical emergency, resulting in hospitalization.

Mitochondrial disorders are generally progressive and may be fatal. However, due to the individuality of symptoms and the differences in specific mitochondrial disorders, it is sometimes difficult even for physicians to predict a prognosis. Some patients live into adulthood. However, earlier and more severe symptoms generally result in a shorter life span.

Monday, October 8, 2007

Updated post

Check out the update, with addition of video, to the 9/12 blog entry. Enjoy!

Saturday, October 6, 2007


I've been doing work at the house again. It all started when I moved into the house, and removed 3 walls - which left big holes in the ceiling. Combine those holes with water damage that was here in the ceilings due to roof damage prior to me owning, and toss in roof damage from the big storm last December, and it was time to get it fixed.

So, I was going to have the ceiling patched where needed, and then re-texture. Until I got a call from the contractor on the first day, and the entire ceiling was coming down. So - I am now in process for a much bigger job of removing all the popcorn, and smoothing out, putting a gentle texture on, and then painting. Here are some pics of the madness...

Yes, this is the living room that I am so proud of... the plastic on the walls is very surreal....
Plywood - gone.. New bookshelf to be built in... and this is looking into the kitchen...

Yes - my Dining room looks spectactular. Dinner? And, the view down the stairwell... it's a user friendly house right now...

Cheerleading, part duex

Well, we are most of the way through the season. It's been crazy. The cheer folks are under the auspices of the football association, and they are much more concerned about the cheer folks fundraising for the boys, than running a sport for the girls. I've been mostly pleased with the way they have approached cheer for those who are first year girls - give an overview of the sport, let them have fun, and give a good overall impression so that they determine where they want to go with cheer in the future. For the most part, we've hit it.

Now, I have to be honest. I was one of those folks in highschool who made fun of cheerleaders. I didn't want to be one, didn't want to know any of them, and now here I am as a mom letting the girls do what they think is cool. The girls have been in gymnastics for over 3 years (5 for Gwenn) and I've realized that these are tough sports - and cheer is no exception. I'm actually starting to think that cheer gyms may be the best way for those that are serious about cheerleading to compete and learn.

We'll see if they want to participate next year. For now, all I care is that they are having fun...

Thursday, October 4, 2007

Olympic Torch Bearer

Hi All,

I'd love it if as many of you as possible would consider following this link and going to vote for Jenny as an Olympic Torch Bearer. Jenny Bowen is an amazing woman who founded Half the Sky, an amazing charity that directly impacts the lives of thousands of orphans in China each year. HTS is one of the charities that I support, and I have been very touched by the impact that they have had on the lives of children in China - not only those who are adopted, but those who remain behind.

How fantastic it would be to have Jenny as a torch bearer for the 2008 Summer Olympics in Beijing - truely someone who has impacted thousands and thousands of lives...

Guatemala Suspends US Adoptions after 1/1/08

Well, it was bound to happen at some point, and the news started yesterday and is rushing in today - Guatemala will suspend all adoptions to the US starting 1/1/08. This will leave thousands of children who are "in process" of being adopted in a legal limbo, and their parents in worse shape - trying to ascertain if the child that they having been waiting for has the right paperwork to prove that they were relinquished within the legal guidelines and boundaries.

You can see the CNN video here, or read the article here...

Guatemala is one of the only countries where birth parents receive renumeration (read money) for relinquishing a child for adoption. Lawyers are the first line, and they recruit children through birth parents in local papers. Often these kiddos are truely in a situation where the parents can't care for them and the BP's want a better life for them - and they are relinquished. But in some cases there is a strong case for the fact that either the BP's have been paid to relinquish their child, or even worse, bullied into relinquishment.

Adoption can be a fantastic thing for children who need homes, and for parents who want to provide homes. But we cannot forget that a birth parent has the right to parent their child, even if they live in poverty, don't drive fancy cars, etc. While Guatemala does this shut down, I think it needs to refocus and remember that the American adoptive parents (AP's) are not at fault. If Guatemala was serious about reform they would look to countries like China, where there is a spotless reputation - and work to emulate them. No money for relinquishment of birth children by birth parents. Continue streamlined process to place children quickly into adoptive homes. Remove the lawyers from the process, and set up orphanages to manage and house the children as they wait for adoption.

It's going to be a long road for Guatemala. Now we just have to wait and see what the next steps this government will take to quickly review the legal status of the thousands of "in process" children, so that they can be reunited with birth parents, or united with their adoptive parents. Unfortunately, this legal limbo does the child no good.

Tuesday, October 2, 2007

Baptised and stuff

Well, this weekend was Lucy's baptism. We had a fine little party with friends and family, and now I get to clean up and enjoy.

Friday, September 28, 2007

Video on Mito

Mitochondrial Disease is an inherited disease that can affect every system in the body. My friends daughter, Penelope, has this disease... It can have hardly any effects, or it can be devestating.

Friday, September 21, 2007

Developmental Evaluation

This morning we had a developmental evaluation for Lucy. After not doing this when I adopted Gwenn, and early intervention would have been beneficial, I'm all in favor of doing the evaluation even if you think that your adopted child is on target.

So the news today is that they believe that for the most part Lucy is on target developmentally - for a 20-24 month old child, which is how old they assume that she really is. Now keep in mind, with a 4/24/05 birthdate, that puts her currently at 29 months - so they are thinking that she is 5-9 months younger than her paperwork states. That is in sync with the pediatrician, who is thinking that she is 6-7 months younger than her paperwork states.

At this point I've now started to think about changing Lucy's birthdate. I'm not emotionally tied to her birthdate, especially with mounting evidence that her birthdate may be either a work of fiction, or what I really think happened - the dates of another child whose paperwork somehow got mixed up with Lucy's. Somehwere out there is a child whose adoptive parents are thinking they have one of the most mature 2 year olds with congenital heart disease....

I'm not sure how I'll lean for birthdays. Right now I'm thinking about meeting in between somewhere - maybe a late August birthday (one less year of childcare) - she'll get into kindergarten early, unless at the time I feel that I need to hold her, with an August birthday I can make that decision. If she gets into school and is only a little behind folks will think "well, she has a late birthday" - but if I keep an April birthday and she is behind it would be more like "what's up with this kiddo!" I know a lot of folks in the adoption world think that you should keep the birthdate. But - if the date is fiction, or one that you have due to a paperwork mix up, let's not be emotionally tied to it - and deal with what might be best for the kiddo. I'm still in the decision making process, but I am leaning towards the date change.