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
Thursday, October 25, 2007
Superficially engaging and charming
Wednesday, October 24, 2007
- Ella - ballerina princess doctor
- Gwenn - scientist
- Lucy - no preference expressed, except for liking to pick her nose...
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
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
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
Now I just have to determine a birthdate.
Tuesday, October 16, 2007
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
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
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
This information is pulled from http://www.k12academics.com/mito.htm
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
Saturday, October 6, 2007
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...
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
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...
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.