A broken arm

Last night, Cristina and I noticed that Bertrand was unusually grouchy about changing clothes, and slightly grouchier over all. We thought it could be the recent changes with diet and medication. Similar grouchiness had followed prior changes in diet, so we assumed this was no different.

Changing him this morning, he seemed extra grouchy about having his right arm touched. At school, he refused to play with his favorite spinning toy. We both thought it was strange that he let his right arm sink into the bean bag, instead of pulling it into his chest like usual. But, he wasn't upset about it. In fact, he was flirting away with his teacher and enjoying his books.

When we picked him up, we again noticed (extra) sensitivity in his right arm. At home, we saw he wasn't moving his right arm at all. We sought expert medical opinions, tried a few things, observed him for about 10 minutes, and then made the decision to go to the ER. (Luckily, our good friend Jimi Malcolm was with us, and he consulted his dad, an orthopedic surgeon, for advice.) We feared a dislocated shoulder.

They x-rayed him in the ER, and to our shock, Bertrand had a break in his humerus at the shoulder. We're still not sure exactly how this happened. He took a spill when a snap broke loose on his stander on Saturday, but he didn't fall with enough force to cause such as injury.

The ER told us that Bertrand also appears to have a bone cyst at the site of the break. If true (and we'll confirm with the fracture clinic soon), then the cyst may have weakened the bone, so that it could break under "normal" behavior, or perhaps during an intense tonic seizure.

Whatever caused the break, Bertrand has been bandanged into a sling for the next four weeks. He seems to be in less pain already, though he doesn't seem thrilled about having his movement constricted.

Bone problems come with some metabolic disorders, so we're going to pursue the bone cyst issue vigorously, in the hope that we can prevent future breaks. We have complete skeletal surveys of Bertrand, and we'll be scrutinizing those for early signs of bone cysts. This might be the clue that cracks Bertrand's case.

In the mean time, you'll see Bertrand bandaged up for at least the next four weeks, and his already paranoid parents just got a notch more frantic.

First day of school pictures!

Bertrand did amazingly well for his first day of pre-school at the Carmen B. Pingree center!

On the "school bus."

Not quite ready to start school.

Bertrand's locker.

Little Nemo backpack.

Exhausted after a long and successful (3-hour) day at school.

Guest Review: "Seized"

Bertrand's grandma Diane reviewed the book Seized by Eve La Plante. Please enjoy!

What might Van Gough, Dostoevsky, Flaubert, Lewis Carroll, Poe, St. Paul, Muhammad, Moses and many more have in common? Analysis of historical data by author Eve La Plante in “Seized” reveals all potentially suffered from a type of epilepsy called Temporal Lobe Epilepsy (TLE). La Plante takes the reader into the world of TLE partial seizures and their effect on the lives of both the extraordinary and the ordinary. This book is recommended as a good first read before further research into epilepsy.

TLE affects over 1 million Americans. The reader becomes sensitized to those with this disorder and how lack of knowledge creates inappropriate prejudice and discrimination against epileptics. Tragically the word “epileptic” often carries such stigma that many doctors initially refer to their patient’s condition as “seizures” only.

In between seizures key TLE symptoms may include hypergraphia (arts/writing), hyperreligiosity, stickiness (dependency on certain people), aggression, and/or altered sexuality. It is believed that TLE causes ordinary traits to be intensively muted or enhanced due to an “underlying brain scar which causes hyperconnectivity”. An over abundance of rapid connections in the emotional part of the brain cause hypersensitivity to environment much like a spigot that can’t be turned off.

The medical history of epilepsy is summarized with focus on important contributors to the field. Past barbaric treatments as well as current and future treatments are discussed. Although brain anatomy and function are reviewed, the reader is left with a desire to learn more as well as research the reasons for abnormal neuronal firing and the various types of epilepsy.

Since there is an organic basis for many mental conditions, the inevitable merging of psychiatry and neurology is addressed. Intriguing age old questions are posed such as “What is a thought?” and “Are mind and body dual in nature?” In addition, the concept in our society that everyone has the free will to control his/her actions is thrown into question. In closing, as a fun exercise before reading, draw the face of a clock at 10 after 11 and see how your clock compares to that of someone with TLE.

Location, location, location

When we bought our house over a year ago, our main consideration was proximity to the University of Utah. Matthew wanted to be able to walk into work every day--rain, snow or shine. Theoretically, it would also allow for more family time and less commute time. Little did we know this choice would also save hours of my life. Our location is absolutely central to all of Bertrand's appointment locations! Exactly 4 minutes from each: Carmen B. Pingree School, Shriner's, Primary Children's and University Hospitals. We got sooooo lucky!

View Bertrand's Medical Access in a larger map

Photos from the Capitol

These are photos from Bertrand's excursion to the Utah State Capitol yesterday. He enjoyed the grounds and the free Capitol museum quite a bit. As you can see at the very bottom, he even tried his hand at lobbying with the world's nicest state fiscal analyst. :) No one can say we didn't try our hardest to fight for the special needs babies of Utah!

A testimony on behalf of Early Intervention

On Friday, March 6, 2009 our family’s world fell apart. We received notice from our medical team at the University of Utah that our beautiful baby boy had a 24 month life expectancy. And, 14 of those months were already up. It was every parents’ nightmare.

We had suspected something was wrong with our son, Bertrand, since birth. Doctors finally agreed by the time he was 6 months, and by 9 months he’d lost most of his milestones. This was when we were referred to Baby Watch Early Intervention. The goals set for Bertrand on paper involved meeting new milestones (such as sitting unassisted) and reviving old ones (such as using hands). At the time, I thought this was the extent of Early Intervention. I couldn’t have been more delighted to be wrong.

Over the proceeding months, Bertrand’s Early Intervention therapists, Kirsten Aalberg and Meghan Boyd (our angels), fought to keep his skills from slipping but, just as important, they taught me: how to be a better mother to a special needs child, how to be his advocate working within various systems and how to stay hopeful. Staying hopeful proved difficult as we traveled and consulted with medical teams at Duke, UNC, Baylor, Johns Hopkins, and even an entire section at the National Institutes of Health. Our son, we learned, was unique--rare disease unique.

Through this I learned that modern medicine and even a mother’s love is not enough. Our family relied on Kirsten and Meghan to keep pushing us forward in the face of overwhelming odds. They hugged us as we went off to seek second opinions, comforted us as we received bad news, and cried tears of joy as Bertrand beat the odds. Their experience and faith in our child’s ability, flying in the face of his grim prognoses, and our son’s resulting development has defied medical science.

On Friday, January 22, 2010, at 25 months-old (a month past his predicted expiration date) Bertrand laughed for the first time. He is thriving. He is trying to speak and learning to read. He will someday soon walk. He’ll be able to go to school. Doctors are baffled in the best possible way. Bertrand’s white matter loss appears stopped and, while he still has a long way to go developmentally, something I’d long given up hope for appears possible: he has a shot at a normal life.

All children deserve a chance for happiness and a chance for a bright future. Early Intervention makes this possible and helps all of us by:

• Giving children life skills early on. An ounce of prevention is worth a pound of cure, and this couldn’t be more true than with a child’s development, which is exponential over time.
• Giving caregivers skills and courage to interact positively with their children, spouses, doctors, the school system and the community at large.
• Giving the community an opportunity to develop contributing members of society, who might other wise be lost, all the while doing the right thing for the youngest and most helpless among us.

In these tough economic times, as Wall Street has shown, it is easy to be shortsighted and look for the quick fix. But, cutting programs such as Early Intervention would be shortchanging Utah’s future. Thank you for giving Bertrand a chance at a normal, happy life. Our current crop of youngest, most helpless Utahans deserve the same opportunity.

The written testimony above was delivered today in person by Bertrand and his Mama to the members of the Joint Health and Human Services Appropriation Subcommittee at the Utah State Capitol. Bertrand hated the politics and the waiting, but loved the Capitol museum, fountains and buildings.

Happenings in Casa Might

Today, Mr. Wang, our first "baby", turned 7 years old! How fast time flies.

In addition, to celebrating Mr. Wang's birthday dinner with steak, today was a fun day of physical therapy, training with the staff at Carmen B. Pingree and going craft shopping with our friends Lynn and Kevin! Look at the great rare disease awareness ribbons Lynn made for us!



Why do we need these ribbons? To wear them on Wednesday when Bertrand goes to testify before the Utah State House of Representatives in regard to the state's Early Intervention program. Five families were selected to testify. It is an honor we hope to do justice to. Hopefully, Bertrand's amazing cuteness will convince legislators to keep from cutting the program's budget!