Overcoming Movement Disorder

30 Days 'Til World Rare Disease Day

2012-01-30T07:59:00.000-08:00

Our Bertrand photo from last year. The edema was an effect from ACTH injections.

30 days from today is World Rare Disease Day.

Why is the number 30 significant?

30% of children with RARE disease will die by their 5th birthday.

Here are more statistics:

An estimated 350 million people are affected by rare disease worldwide.
1 in 10 Americans is affected by rare disease.
That’s over 30 million Americans. To put it in perspective, 30 million Americans is more than the total number of people living worldwide with cancer (28 million according to the Livestrong Foundation).
There are more than 7,000 rare diseases with some affecting less than 100 people.
75% of rare diseases affect children.
Almost 80% of rare disease are genetic in origin.
These rare conditions are chronic, life threatening and FATAL. There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment.
Over 50% of Rare Diseases have no foundations, advocacy group or community support.

Bertrand is one of the 50%.

Get involved, and care for rare! Hope is in our genes!

Power Wheelchair?

2012-01-27T18:23:00.000-08:00

I love this image from Ottobock. Can't you just see Bertrand staring up at the fishes like that?

And, the little plow bar in front is for playing soccer. :)

Bertrand had his regular 6-month wheelchair fitting today. He had grown a lot, but the adjustments were made quickly. His chair will get another tune-up in July.

While his chair is in great condition, I broached the subject of a power wheelchair with the technician. And, he put Bertrand on a list for a power wheelchair evaluation! The eval will likely be sometime in March at the soonest.

There are 2 routes to getting a power wheelchair--assuming he qualifies. We can request a donated chair or we can find a chair ourselves. (If we can find or buy a power wheelchair ourselves, then they will fit it for him regardless.)

Bertrand has been working with a mobility specialist at his preschool, and his home OT and PT will add to his training. Hopefully that combination will give him enough of an edge when he gets evaluated. (Cue "Eye of the Tiger" and montage!)

No steps backward!

2012-01-26T20:26:00.000-08:00

With Bertrand's medical care, I often feel that for every step forward, there is at least one (or more) steps backward. This week was a good week because there were no steps backward!

Orthopedics:

Bertrand saw the chief orthopedic doctor at Shriners hospital yesterday. We got good news:

Bertrand's tone is a bit low but good.
Bertrand's subluxated hip has no tightness and full range of motion, so he doesn't anticipate any kind of intervention (surgical or injection) being necessary!
Bertrand's spine can still straighten when laying down. There is only a 30 degree curve when sitting slumped--which anyone could have if they slumped.
Bertrand should only wear his back brace if he'd otherwise be sitting slumped for a prolonged time. Strengthening his back and abdomen muscles is the best prevention.

Ophthalmology:

Bertrand saw the young, insightful doctor again, this morning. She'd been thinking about him:

Bertrand failed the corneal sensitivity test. THREE times.
Bertrand continues to require a LOT of lubrication.
Bertrand should get a pair of moisture chamber goggles for daytime use.
Bertrand should try tranquileyes for nighttime use. (Testing this tonight!)

Neurology:

After another round of phone calls, I FINALLY got someone to schedule Bertrand's EEG. The soonest available was February 24 - 26, which avoids missing school, so I took it.

Victoria Walking

2012-01-25T17:10:00.000-08:00

Not her best, but you get the idea. :)

What is normal?

2012-01-24T19:11:00.000-08:00

Normal for V and Normal for B.

At playgroup, a fellow mom gestures to Victoria and remarks with amazement, “She’s standing!” Yes, she takes a few steps too. (Victoria obliges with a small demonstration.) “How old is she again? Only 9 months? That’s advanced!”

At the bus stop while we're waiting for Bertrand, a neighbor with a boy Victoria’s age asks, “has she started soft solids yet.” What do you mean? She says, “like mashed bananas.” She eats her own kid’s meals. She loves bacon! “That's advanced!”

These examples are just within the past 24 hours. Since she was a couple weeks old, perfect strangers have come up to remark to us how “advanced” Victoria was, from head control, alertness & expression, to now walking, self-feeding & signing.

This was new to us. For a while we figured that telling parents that their child was “advanced” was the new “cute”. Then it started happening frequently enough, that I started to get a bit paranoid & typically self-recriminating. “What if I am accidentally giving her physical therapy instead of playing like a *normal* parent?!” And, then, at some point, I finally stopped caring.

She’ll be okay.

Before Victoria, we didn’t say that Bertrand had delays, special needs, or special powers. Other kids were just “normies”. Depending on the context, I could use the term matter-of-factly or spit the epithet like a slur. Now, even in light of her 9 month-old “accomplishments”, Victoria classifies as a “normie” to us.

Even though we, her loving parents, mean no harm by it, words have power. Perhaps we shouldn’t be using the word “normie” in front of Victoria or to refer to her? Much like other loaded words, I’d rather postpone the discussion as long as possible. But in order to communicate effectively, we need accurate words. How do we describe her brother? Other children ask all the time. Should we just learn to accept the “special needs”, “developmentally delayed” or “disabled” labels, even though they all fit like an itchy burlap sack? They fail at being accurate. They don’t capture all that Bertrand is. They just capture what he is not. How is “normie” any different?

We can all agree, Bertrand isn’t the poster child for normal. But, apparently, neither is Victoria. I wouldn’t call Matthew or myself normal either. (Although perhaps the man with a Star Trek table in his office would beg to differ?)

What is normal anyway?

Working with Miss A.

2012-01-23T23:41:00.000-08:00

Here Bertrand is working with Miss A. He loves her! (Sorry for the poor audio. Someone chewed on my phone and damaged the speaker.)

Team Bertrand's Newest Members

2012-01-21T12:50:00.000-08:00

More Bertrand-schoolbus awesomeness--just because.

Bertrand had a big week! At his pediatric and naturopathic follow-ups, both doctors commented on how great he looked. In particular, his pediatrician was impressed with Bertrand's muscle tone. Yes, I was beaming. :)

To help maintain (dare I say improve?) that great tone, we hired two new members to Team Bertrand: Miss A and Miss V! Both A & V are graduate students up at the University of Utah, pursuing doctoral degrees in physical therapy and occupational therapy, respectively.

Miss V started yesterday morning and Bertrand had a blast! You could hear him giggle & sweet talk her (he's such a flirt) all through the house. She did a marvelous job getting to know our B, working him through his Now I Can exercises, as well as incorporating OT and school lessons.

What a big step toward better balance for all of us!

Victoria's 9 Month Photos

2012-01-20T10:11:00.000-08:00

Victoria celebrated her 9 month birthday last Saturday with a photo-shoot by our darling and talented friend Staci (now at Sweet Envy Photography)! She perfectly caught Victoria's personality, and as you can tell, we're in trouble. ;)

The Happy Mystery

2012-01-19T20:14:00.000-08:00

Bertrand is the medical mystery that keeps on giving. Here are two of his most recent puzzles.

The Case of the Disappeared Blink.

At a recent ophthalmology appointment, a doctor noted that Bertrand doesn't blink. His lack of blinking is new. This appears to be the new cause of his corneal erosion. While Bertrand produces tears and can cry now, his corneal erosion has persisted. I immediately flashed to this post by my friend, Carrie, about her daughter Hannah's loss of blink reflex. Lack of blinking is a symptom of Parkinson's disease, with which Bertrand's condition shares some similarities. Blink rate has a direct correlation with dopamine levels. In low dopamine conditions such as Parkinson's, individuals may barely blink. In high dopamine conditions such as schizophrenia, individuals may have a very high blink rate. Certain medications have as a side-effect dopamine reduction and resulting blink reflex loss. The ophthomologist, citing possible drug interaction, decided to write a note to inform Bertrand's neurology team of the finding.

With the neurologists both M.I.A. (yup, the new one is equally unresponsive and Bertrand's EEG has yet to be scheduled), I called my dad. He played the reasonable Watson to my flighty Sherlock. Bertrand's CSF dopamine has tested normal. His movement disorder doesn't present like a low dopamine one. However, corneal sensitivity is what triggers the blink. Both Bertrand's corneas have scarred. Scar tissue is not sensitive. Perhaps it is that simple? We like simple and non-invasive. Bertrand will undergo a non-invasive corneal sensitivity test at his next ophthalmology appointment.

(Regardless, the course of action is lubrication, lubrication, lubrication. Drops don't cut it. Big B is a gel and ointment man. Good times.)

The Happy Mystery

Since Monday, Bertrand has been happy. REALLY happy. Like, perhaps the-happiest-he-has-ever-been-in-his-entire-life happy. Obviously, this is a good thing. And, alert--he stopped taking naps during the day. That is HUGE. However, we don't know what triggered it. And, it bothers me like you wouldn't believe! I lay awake at night trying to figure it out. With Bertrand, we take nothing for granted. If I don't find the root, then I'll keep waiting for the other shoe to drop. We may accidentally mess it up. Or, we could miss the opportunity to make him even happier by doing more of whatever we did right. Neither is acceptable to me. There are a lot of variables, but here are some candidates:

Stopped administering ursodiol (Friday afternoon)
Switched to a more complete multivitamin
Resumed application of the B12 patch
Changed brand of l-carnitine supplement
Restarted dairy after 8 weeks since he's not allergic (Sunday night)
Added whey protein smoothies for lunch
Started riding school bus (Just kidding! That was Tuesday)

Despite our beloved gastroenterologist's claim that ursodiol is a fairly benign bile salt, it is my primary suspect. This case remains open.

Bertrand had a banner day!

2012-01-18T19:26:00.000-08:00

Below is a note from school. We are so proud of our big, school-bus-riding, smiling, funny boy!

"WhAt aN AmaZiNg DaY BeRtRaND hAd ToDaY!!! During worktime we observed that he seemed to be laughing appropriately at the kids and following what they were doing. Then during my language group (large group time) he was laughing at the animal sounds that I was making. When I made my elephant noise he laughed 3 times in a row. (I was pausing and testing to see if it was in response to my noise, or just laughter and he would wait for me to make it before laughing!) Then later in the book he laughed four more times after my monkey noise! (The first two times Heather and I thought he was trying to imitate it, rather than laugh at it. The next two times he was definitely laughing!!!) Later we tried it again and he did it again for Christina. We tried it one more time (with the video camera on) and he would not do it to save my life! (Apparently I'm just not that funny ;o) But what a day!!! We'll try to get it to happen again tomorrow."

School Bus!

2012-01-17T11:42:00.001-08:00

Waiting for the school bus.

Getting buckled up on the bus.

Peaking in at the big boy.

Ready to go.

And they're off!

Getting off at school. The light is bright!

(photo credit: Miss Heather)

Rollin' into school like a boss! ;)

(photo credit: Miss Heather)

I want to extend our sincerest thanks to everyone who made this possible. The look of wonder on Bertrand's little face as he was lifted on to the bus was priceless. :)

Social Media Detox

2012-01-16T19:34:00.001-08:00

Some cute moments I caught on my phone's camera today, including proof that my kids wear clothes... sometimes.

For months now, I've barely sat in front of my computer. I've written blog posts, checked emails, updated twitter, read facebook almost exclusively from my phone. More than just a convenience or an easily dismissed bad habit, after reading this NY Times article on "decision fatigue", I've realized that the constant connectedness has played a role in draining me. In an effort to bolster my internal resources, I deleted (GASP!) my Facebook and Twitter apps. And, I wager that locking my web browser and email client won't be far behind. If you see me looking a little lost and jittery, now you know why. I know it won't be easy at first, but it's for my own good. Please wish me luck! I'll need it.

PS - I'll still be checking email, but primarily on my computer maybe once or twice a day. As much as it pains me to say this, if you want to get in touch with me quickly, send a text message or even (groan!) call me.

Sleeping Beauty

2012-01-14T09:21:00.000-08:00

Subtitle: Starting to live again.

Bertrand laughs at Victoria. "You don't play the piano upside down, silly sister!"

The past 4 years of our family have drawn a parallel to the story of Sleeping Beauty. In our case, the handsome prince Bertrand was our sleeping beauty. And, the unexpected hero has been the fearless little queen Victoria.

Of course, Bertrand is a hero. He is the protagonist of this blog and is always in the spotlight. But in this story, we discover that a tiny imp of a sister can be a hero too. :)

You see, when we moved to Utah we learned that Bertrand had medical issues, the extent of which were unknown at the time. Our lives in many ways became frozen. In a state of suspended animation, we focused solely on Bertrand's condition, diagnosis, treatments, quality of life.

With the exception of Bertrand's room, our house was frozen in the state it was unpacked in. Our hobbies were squelched and our habits became entrenched, in spite of concerted efforts to kick start life again. It was Groundhog Day. We were living in the moment... to a fault.

The birth of Victoria has changed all that. The thawing started with baby-proofing, but has extended much deeper. We're living each day to the fullest, but like we have a future too. Bertrand's special needs trust bank account was opened. Matthew lost 40 pounds and got in shape--to be able to care for Bertrand and walk Victoria down the aisle. (Which will be difficult as I may never allow her to date.) I've started to rediscover my hobbies and work on my own health--again for Bertrand as much as Victoria.

The biggest eye opener for me was the holidays. For the first time in 3 years, I didn't burst into tears at every catalog and commercial depicting happy, able-bodied children opening presents, decorating gingerbread houses, or engaging in snowball fights. I was able to smile as I witnessed Victoria enjoying those things and Bertrand enjoying them in his own way! The joy I found in his accomplishment wasn't forced. She managed to take the unintentional burden off of Bertrand to conform, and for that alone I am grateful.

Bertrand's life has gotten infinitely richer because of his little sister. Before Victoria, we paid lip-service to the concept of childhood, but our world revolved around therapy. Post Victoria, we play for playing's sake! We laugh together--a LOT! Bertrand's sense of humor has really come into focus, and I've come to know him even better than I did when he had my unwavering attention.

As with anything, there are ups and downs. Victoria's progress has opened a lot of old wounds and grief. But, the experience, I think, is a healing one. The pain has been akin to breaking a bone to set it correctly rather than just rubbing salt in a wound for no reason. It frees us.

All that to say, we are extremely grateful for both our wonderful children! We know that "happily ever after" isn't guaranteed, but at least it's possible. :)

Happy 9-month birthday, Victoria!

Inflammatory Bowel?

2012-01-13T09:23:00.000-08:00

Bertrand looking enthusiastic.

"You poke my belly and now you want to do WHAT to my butt?!"

At Bertrand's GI appointment today, the doctor told us to stop his medication ursodiol/actigall because his liver enzymes have normalized. (Bertrand was on 180mg 3 times a day for over a year and a half.) At the follow-up appointment in 6 months, if Bertrand's liver enzymes have risen again, he will reinstate the ursodiol. But for now, that's one less medication! Yippee!

Also, Bertrand's faecal calprotectin test came back elevated. This usually calls for a colonoscopy. But, because this test has some false positives and the colonoscopy is a sedated procedure, the doctor ordered a repeat of the test, which is just a fecal sample. The reason this test was ordered in the first place was to check for inflammatory bowel (not to be confused with irritable bowel). The bowel is where many vitamins are absorbed, and chronic inflammation interferes with vitamin absorption. Causes could be anything from Crohn's disease (not likely) to metabolic disorder (duh), so now that's on the table. Fingers crossed for a normal result!

P.S. - Bertrand's weight is much better but the doctor still wants him to lose more. :(

Pinocchio

2012-01-12T19:02:00.000-08:00

"I've got no strings. To hold me down. To make me fret, or make me frown. I had strings. But now I'm free. There are no strings on me!"

Above: Bertrand's teachers at school put strings on his shoes to help prompt him to move his legs. Aren't they creative?! And, isn't he cute? :)

Tomorrow: Bertrand has a GI appointment and I will email the 2 PT aide candidates we selected! Going through all the resumes, references and schedules was time consuming but worth it. I am amazed at all the extremely qualified individuals who want to work with B!

Next Week: Bertrand starts riding the bus to school on Tuesday! His AM driver will be Ernie and his PM driver will be George. I am sure Bertrand will LOVE them and the bus. He's such a big boy. :)

Wordless Wednesday

2012-01-11T20:26:00.001-08:00

(Received these canvases today! Now, where to put them?)

Going to the 2012 Abilities Expo!

2012-01-10T13:04:00.001-08:00

Bertrand received a surprise Christmas gift: a trip to the 2012 Abilities Expo in Atlanta, Georgia!

The Abilities Expo takes place February 17-19, 2012 at the Georgia World Congress Center and admission is FREE!

We're excited to see and try out items for Bertrand!

School Parking Spot

2012-01-09T20:43:00.001-08:00

Remember our parking issues last year?

There are two new wheelchair accessible parking spots at Bertrand's school.

Please note the sign. :)

Run to Walk 2012

2012-01-06T21:34:00.000-08:00

It's time to gear-up for the 4th annual Run to Walk! Run to Walk is a charity run helping children with disabilities pay for physical therapy so they can reach their physical goals and greater independence!

(Basically, it benefits the Now I Can Foundation which has worked wonders for Bertrand.)

Bring the whole family for lots of fun!

There will be a 5K race and a 1 Mile fun run/walk.

In the 5k race there will be cash prizes for the top 3 men and women overall ($75/$50/$25) and a prize for each M/F age group winner.

Join us after the run for carnival games for kids, food, and a raffle for great prizes!

Cost is $15 for the 5K and $10 for the 1 mile walk/run until May 11th (price increases to $20/$15 after May 11, and race day price is $25/$20). Groups of 5 can register for $65 until May 11th (price increases to $90 after May 11, and race day group rate does not apply).

Online registration will close Friday May 18th at Noon.

Race-day registration will be from 6:30-7:30 am.

Getting Back on Track

2012-01-05T22:04:00.000-08:00

Getting back on track blog-wise after the holidays has proven challenging. I'm hoping that posting something--no matter how long or short--will renew the posting habit. :)

The past month has been difficult since Bertrand's girlfriend Hannah passed away. The emotions involved have been hard and confusing.

Also emotionally complex has been Victoria's total eclipse of every milestone Bertrand ever accomplished. She has consistently stayed ahead of every development guide. Crawling at 5 months-old. Cruising at 7 months-old. And now at 8 months-old, she can crawl up stairs and just began using the sign for "milk". Of course, it's relieving in that we don't have to question her health. But, it's tough in that we've entered uncharted territory--we're essentially first time parents!

With that have come realizations about our limitations and desires as parents. While I've been acting as Bertrand's at-home therapist for 4 years, that is not the role I want. I want to be his mother--and Victoria's. With the ways things currently are, I feel as though I am failing at both roles. As hard as it is to say, I need help.

To clarify, I need help that doesn't come with strings attached.

So, put the word out, we're looking for a physical therapy student interested in working with Bertrand in the mornings before school, 5 days per week. The student would follow the program set forth by a licensed physical therapist at Now I Can.

Ideally I will put those hours to work on physical therapy for myself (to slow the disintegration of my knees), to dedicate more time for Victoria, or to improve my general sanity.

I'm terrified. Please wish us luck!

Nystagmus

2012-01-04T19:35:00.000-08:00

At Bertrand's ophthalmology appointment he was diagnosed with nystagmus.

Things to think about...

2012-01-03T09:47:00.000-08:00

Today, Bertrand had his first appointment with an epileptologist in Utah. We're waiting to hear back from scheduling for a 2 day overnight EEG. The doctor also left us with two new treatments to research and think about:

Next steps will be taken based on the EEG findings.

Lab Results

2011-12-30T23:00:00.000-08:00

Blood drawn on December 30, 2011

Medication Levels:

VPA 93.3 (50-125)

Lamotrigine 9.9 (3.0-14.0)

Complete Blood Count:

MCV 89 (75-87) *High

MCH 30.4 (24-30) *High

Platelets 130 (150-400) *Low

Comprehensive Metabolic Panel:

ALT 18 (5-45)

AST 78 (20-60) *High

Allergy Testing

2011-12-15T22:09:00.000-08:00

Bertrand was seen by an allergist/immunologist. He received a scratch (IgE) test for the most common allergens, including: dog, cat, tree pollen, grass, mold, egg, wheat, dairy and soy. There was no reaction after 30 minutes. (We kept an eye on the ares for the following 3 days for good measure. The bottom right histamine control scratch was the only welt and it did react like it was supposed to.)

YAY! According to the immunologist, Bertrand does NOT have allergies!

School Picture Retakes

2011-12-14T22:10:00.000-08:00

MUCH BETTER! Second time's a charm. :)

Do you remember this? His "smile worth sharing"?

Bertrand turns 4

2011-12-09T20:45:00.000-08:00

Today was Bertrand's fourth birthday. He had a good day full of playtime, good food, phone calls, presents, and naps. He was frequently interrupted for hugs, kisses & cuddles.

Hugs and kisses may not be his favorite things, but they were more for me than him. It's been a somber day (week? month? year?) and one of much reflection.

Bertrand, we are so proud of you. We are grateful for every moment we have with you, for every smile, for every hug. We'll do our best to celebrate all the milestones of your life, for your benefit and in honor of those who'll never get to celebrate their 4th birthday. Love, Mama & Daddy

Lunch Time

2011-12-08T13:24:00.001-08:00

Both kids are "feeding" themselves. :)

IEP Meeting 2011

2011-12-07T12:04:00.000-08:00

Bertrand's Individualized Education Plan (IEP) was revised today.

He's come a long way from his first IEP last year.

These are his old "Measurable Annual Goals":

Annual Goal 1: Bertrand will use eye gaze with an adult in the classroom to indicate turning the pages in a book or continuing a preferred activity or toy.
Annual Goal 2: Bertrand will stay alert for 5-7 minutes during group activities.
Annual Goal 3: Bertrand will tolerate a variety of textures and various sitting positions throughout the school day.
Annual Goal 4: Bertrand will demonstrate anticipation of upcoming events when presented with a touch cue.
Annual Goal 5: Bertrand will indicate a choice among two preferred items.
Annual Goal 6: Bertrand will use a switch to activate a toy consistently within the classroom.

These are his new "Measurable Annual Goals":

Annual Goal 1: Bertrand will sit with supervision during circle time.
Annual Goal 2: Bertrand will improve weight bearing while at school for 2/3 opportunities
Annual Goal 3: Bertrand will tolerate a variety of textures to participate in structured group activities and play.
Annual Goal 4: Bertrand will stay awake/alert for 4/5 classroom activities throughout the school day.
Annual Goal 5: Bertrand will demonstrate anticipation of upcoming events when presented with a touch or object cue.
Annual Goal 6: Bertrand will indicate a choice among two preferred items.
Annual Goal 7: Bertrand will use a switch to consistently activate a toy or object without adult assistance.
Annual Goal 8: Bertrand will indicate "done" or "finished" to complete an activity 50% of the time.

These are his old "Services plus Adaptation Support":

Special Ed. Preschool - 150 minutes 2 times/wk
Speech Services - 30 minutes weekly
Occupational Therapy - 30 minutes monthly
Physical Therapy - 30 minutes monthly
Visional Services - 30 minutes monthly

These are his new "Services plus Adaptation Support":

Special Ed. Preschool - 600 minutes weekly
Speech Services - 60 minutes weekly
Occupational Therapy - 30 minutes monthly
Physical Therapy - 30 minutes monthly
Visional Services - 30 minutes quarterly

Food Sensitivity

2011-12-06T18:18:00.000-08:00

At Bertrand's follow-up with the naturopathic doctor today, we received the results for his IgG food sensitivity panel. According to this test he is highly reactive to most dairy... AND soy. (Oops! So much for soy milk.) We'll seek a consultation with an allergist. In the meantime, we'll continue to experiment with a non-dairy/non-soy regimen for Bertrand. Good thing he loves coconut milk.

Goodbye, Little Miss Hannah.

2011-12-05T17:30:00.000-08:00

Hannah and her man, July 2009.

Yesterday evening, our darling Little Miss Hannah passed away.

The injustice, anger, and grief is suffocating.

Bertrand's sweet girlfriend deserved so much more! A long life, health, education, kids, grandkids... even a boyfriend who didn't snatch her toys and whap her with them.

Hannah left the world far too soon. She left behind a legion who fervently love her, and armed them with her grace, tenacity, and courage.

We will continue to fight for her.

We will find a cure.

We will always love you, Hannah.

Hannah's 3rd birthday party, July 2011.

********************

Hannah Ostrea, born July 25, 2008, passed away peacefully on December 4, 2011, surrounded by her family following a lifelong battle against Neuronopathic Gaucher’s Disease. In our hearts, she is now free from the prison of this disease and is able to run, play, and be able to dance to her favorite song, Ice, Ice, Baby (Glee version!).

She lived for only three short years, yet her beautiful smile, intoxicating charm, and her courageous fighting spirit forever captured the hearts of everyone who had the opportunity to get to know her. Even though she was never able to speak a word, her expressions, her laughs, and her eyes were able to speak volumes.

A celebration of Hannah’s life will be held at the King David Chapel (inside Palm Eastern Cemetery) on December 11th at 12:30 pm. It is open to all who loved her, help care for her, and who have had their lives touched by our Little Miss Hannah.

** We ask that those who join us wear pink, yellow, (her favorites) or other vibrant and bright colors and refrain from black attire. Because of her love of Minnie Mouse, we also encourage Disney attire and accessories. **

In lieu of flowers, please consider a donation to:
Hannah Ostrea Fund
c/o Wells Fargo Bank, Acct #2196312850
640 South Green Valley Parkway
Henderson, NV 89052

These funds will be used towards the creation and development of Hannah's legacy, the Little Miss Hannah Foundation.

Now I Can: Session 2 Highlights

2011-12-04T17:00:00.000-08:00

These images speak for themselves.

Happy 1st of December!

2011-12-01T20:41:00.001-08:00

Victoria watches "Miracle on 34th Street" with Great-Grandma.

A very important 4th birthday is coming up! Party planning will start next week, after we survive this weekend. :)

Tomorrow, Bertrand is taking a break from Now I Can to go to the Festival of Trees! Tree lights and music make B extremely happy!

And Victoria is happy as well--she is cruising! She is pulling herself up on everything. V refuses to be in her exersaucer--she just wants to walk around the outer rim. Her crawl has morphed from using knees to using her feet with butt up in the air. (Downward dog for all you yoga folks.) It's pretty funny! We are scrambling to baby-proof the house for the first time ever. :)

Thanksgiving 2011

2011-11-27T17:58:00.000-08:00

Bertrand stripped down.

Victoria played with her elf cap.

Abuelito loved his granddaughter.

Victoria perfected her crawl.

And discovered her stocking.

Penny guarded the chickens.

And the chickens guarded Penny.

Uncle Steve taught Victoria to play X-Men.

Sabrina taught Victoria to stand.

Rico guarded the food.

Yum!

Mr. Wang sat this one out.

Update on Health, Therapy, Diet, & Family

2011-11-26T21:00:00.000-08:00

Bertrand & Victoria enjoy snuggling on the couch with Abuelito.

Health:

Bertrand, Victoria and Mama have gotten their first colds of the season. Both kids are staying active and in high spirits in spite of the illness. In Victoria's case, this is her first cold ever and she has handled it like a champ. In Bertrand's case, this is his first real cold since restarting preschool 4 months ago AND he seems to be getting over it as quickly as Victoria and me. This is remarkable! His immune system appears to be doing better than ever.

Therapy:

As mentioned before, we jumped at the opportunity for Bertrand to attend another intensive therapy session at Now I Can. The 2 week session starts on Monday! Because of Daddy's travel, Mama's volunteer commitments and Victoria's cold, Bertrand's Nana is coming to the rescue. She will be taking Bertrand to Now I Can, so I don't lose (more of?) my mind.

Diet:

Since starting vitamin therapy, Bertrand has improved substantially. However, I was concerned about the high quantity of fat soluble vitamins (A & E in particular) that he was receiving. On October 31, his geneticist did me the favor of running levels for vitamins A & E. Bertrand's results were in the low normal range!

Vitamin A 0.36 (normal range: 0.20 - 0.50)
Vitamin E 6.0 (normal range: 5.5 - 9.0)

Why was I excited about this? First of all, this meant that Bertrand wasn't in danger of vitamin toxicity. Secondly, this meant that Bertrand had been extremely vitamin deficient, if after 3 months of vitamin mega-dosing he was just barely in the normal range! We were justified in our concerns.

Since then, Bertrand's vitamin & mineral supplements have been adjusted with the guidance of a naturopath. Bertrand continues to cry tears regularly, even to display emotion, which for us is a great sign!

One of the items which the naturopath brought up in Bertrand's initial examination was the possibility of dairy allergy or sensitivity. So on a lark, I bought some soy milk for Bertrand a week ago. There was noticeable improvement in his breathing and seizure level the next day. And, since then he has been doing very well despite his cold. We're still waiting on the blood test result for dairy allergy which the naturopath ordered, but regardless I will be more insistent when speaking with Bertrand's pediatrician about a referral to an allergist.

Family:

The past few weeks have really underscored how lucky we are to have family close by. Nana, Papa, Titi Saby and Uncle Steve have become vital to the functioning of our family! We loved having Abuelito and Uncle Dan out here for thanksgiving, even if the stay was too short. :) We're already looking forward to seeing them again, and more uncles and aunts, soon!

Standing in front of a gingerbread "house" at the Grand America.

More intensive therapy?!

2011-11-23T21:37:00.001-08:00

Bertrand & his dear friend play during dinner at a restaurant.

Interesting things are afoot with Bertrand! We've eliminated dairy from his diet with promising results (more on that later). We also just got word today that there was a cancellation at Now I Can (intensive therapy program) for NEXT WEEK! We snatched it up. It will take some juggling to make it work, but thank goodness for grandparents!

New Neurologist Starting 2012

2011-11-21T10:57:00.000-08:00

Bertrand will start seeing a new neurologist next year. Her name is Helen Barkan and she is an M.D./Ph.D., with her Ph.D. being in electrical engineering! Being engineers ourselves, this gives us hope that she'll speak our language, and we'll have an easier time staying on the same page. At the very least, perhaps she'll share our hope that good quality of life is not a lost cause for Bertrand! Please wish us luck!

Information on Dr. Barkan:

Academic Departments	Neurology - Associate Professor (Clinical) Pediatrics - Adjunct Associate Professor
Academic Divisions	Pediatric Neurology
Board Certification	American Board of Clinical Neurophysiology American Board of Psychiatry & Neurology

Education History:

Type	School	Degree
Fellowship	Mayo Clinic, Department of Neurology Clinical Neurophysiology, EEG/ Epilepsy	Fellow
Fellowship	Wake Forest School of Medicine Workshop for practicing adult neurologist & Epilepsy Fellows	Mini-Fellowship
Chief Resident	Dartmouth -Hitchcock Medical Center Neurology	Chief Resident
Residency	Dartmouth-Hitchcock Medical Center, Department of Neurology Neurology	Resident
Fellowship	University of California Los Angeles, Cerebral Blood Flow Laboratory Transcranial Doppler Ultrsonography	Mini-Fellowship
Certification	University of California Los Angeles, Cerebral Blood Flow Laboratory Transcranial Doppler Ultrasonography	Certification
Internship	Dartmouth-Hitchcock Medical Center, Department of Medicine General Medicine	Intern
Doctoral Training	Dartmouth Medical School and Thayer School of Engineering Engineering Science	Ph.D.
Professional Medical	Dartmouth Medical School and Thayer School of Engineering Medicine	M.D.
Fellowship	Thayer School of Engineering Colligan Graduate Fellowship	Fellow
Other Training	Harvard University Special Graduate Student program 5-course self-directed graduate program in Neuroscience	Postgraduate Studies
Graduate Training	Boston University School of Engineering Electrical Engineering	M.S.
Undergraduate	Princeton University Chemistry	A.B.

Self-Portraits

2011-11-20T17:22:00.000-08:00

Victoria managed to turn on my phone's camera and put it in self-portrait mode (kind of like a mirror). She was having a blast! Bertrand wanted in on the fun, and boy, did he ham it up! So, here you go, just a few shots of both kids smiling at themselves. :)

JouJou Sneak Peek!

2011-11-19T11:14:00.000-08:00


Victoria & Bertrand in their holiday elfin attire, ready to go!

Today, Bertrand and Victoria got a sneak peek at the new toy store, Jou Jou, located at the Grand America. The grand opening is on November 25th.

Jou Jou is a high-concept toy store/wonderland*, packed with unique creativity- and imagination-boosting toys from across the globe.

Today's sneak peek was organized with the Junior League of Salt Lake City and benefitted the Salt Lake CAP Head Start program.


Daddy took more pictures of the food than the toys or his kids.

Bertrand and Victoria were enthralled with the candy-dispensing interactive organ, giant robots, paper dragons and 3D monsters!

It tuckered-out both kids! We look forward to going to JouJou again! :)

-----------------------------------

* Here are more details on JouJou for the big kids amongst you:

Monsterpiece Theater: Step up to a monster portrait wall to interact with 10 originally designed and animated characters; computer-generated portraits interact with guests once their presence is detected using sonar and face tracking technologies.
Musical Candy Organ: Walk along the candy organ’s interactive floor. The floor senses weight which reacts by lighting up and playing music. Dispense sweets from over 30 organ pipes filled 17 feet to the top with delicious candies.
Magical Honey Tree: Capture a fairy that lives in a magical tree. Each fairy resides in a lit hole of the tree trunk until taken home in a specialty branded jar complete with the fairy’s name and favorite activities.

Wordless Wednesday

2011-11-16T21:25:00.001-08:00

Victoria is seven months-old and she finally has enough hair to look messy!

P.S. - Bertrand had his first craniosacral therapy session today. He enjoyed it.

Bertrand & Victoria Play

2011-11-15T20:38:00.000-08:00

About 30 seconds into the video, you can see Bertrand and Victoria interacting, and at about 45 seconds, Bertrand starts talking with Victoria. It's all fun and games until Victoria decides to pull Bertrand's hair. She is just one of the many women who love Bertrand's hair. :)

Festival of Trees Tickets on Sale!

2011-11-14T20:51:00.000-08:00

It's Festival of Trees time!

This is a fundraiser for Primary Children's Medical Center--Bertrand's main hospital.

I'll be selling discount tickets through November 28th!

$4.00 for adults and $2.50 for kids (free for kids under age 2). 100% of the proceeds go to PCMC!

You'll be able to see the glory that is Charlotte and Lily's tree! You can't miss it. :)

Shoot me an email (cristina-at-might-dot-net) if you want tickets!

Victoria's love affair with a wood chip.

2011-11-13T11:48:00.000-08:00

Victoria had an obsession with the wood chips at the park. She would ignore the camera, her parents, squeeky toys, you name it, in favor of the oh-so-fascinating and ever-so-tasty wood chips. You can also see what would happen when she was relieved of her precious wood chips.

Bertrand's GQ Look

2011-11-13T11:41:00.000-08:00

Bertrand's "look" was a little too high-fashion for our family portraits, but you have to admit he is one handsome fellow!

Family Portraits: Victoria & Bertrand

2011-11-12T07:08:00.000-08:00

These photos are representative of what our portrait sitting was really like.

Naturopathic Treatment Plan

2011-11-11T20:30:00.000-08:00

From top left: Nordic Naturals cod liver oil, children's chewable multivitamin, whey protein powder, detox pill, vitamin E (mixed tocopherols) pill, lecithin granules, vitamin A (beta-carotene form) drops, oxicell (glutathione and superoxide dismutase) topical cream.

This morning, Bertrand woke up with his glands (tear ducts, eyelids, nose, skin pores) on overdrive and pooping a lot. With Bertrand, poop is always a good sign. This means he was in a GREAT mood: happy and interactive. Also, no (*knock on wood*) seizures.

DUE DILIGENCE. Bertrand's naturopathic treatment does not replace his conventional medical treatment. He remains on the medications lamictal (25mg x2), depakote (250mg x2), actigall (180mg x3) and carnitor SF (450mg x2). And, he'll remain on these medications unless his neurologist and gastroenterologist say otherwise. (And, we will subject naturopathic recommendations to the same experimental and observational scrutiny we apply to any other.)

This initial naturopathic treatment plan is just that: initial. He will not remain on these high doses of vitamins and supplements long-term. In 3 weeks, he has a follow-up to adjust this treatment plan and go over test (lead, food allergy, microbiology) results.

In researching the individual items of the treatment plan, I am most skeptical/concerned about the "detox" supplement aimed at liver detoxification. We will be watching Bertrand very closely for any adverse signs. The remaining treatment plan items (supplements, craniosacral therapy, etc.) cause harm only to our pocket book.

As far as tests go, there were two blood tests and one stool test. The stool test is called a "microbiology". From my understanding, it is used to measure the levels and identify the types of both good and bad bacteria in the digestive tract. The blood tests included one for lead (self explanatory) and one for food allergy.

FOOD ALLERGIES. I've asked Bertrand's doctors about food allergies before at the encouragement of little John's mom. Also, I know Bertrand's IgE and IgG are elevated. This can be due to infection or allergies. For the most part, his doctors have always dismissed this as "he's probably dealing with a cold". He also had an EGD earlier this year which showed no signs of Celiac or food allergies.

But, Bertrand's upper respiratory tract always sounds congested. Every single doctor checks him out because of it. But, upon listening to his lungs, which are clear, they just scratch their heads and say he is fine. Well, the naturopathic doctor doesn't think this is "fine" and I agree. That doesn't mean I'm convinced it is allergies, but something is causing Bertrand's raspiness, snoring, and rough breathing issues. I hope we can get to the bottom of this.

The naturopathic doctor felt that Bertrand should be tested for food allergies because he sees upper respiratory issues commonly with dairy allergies. Yes. DAIRY. As in 90% of Bertrand's current diet. And, I'm pretty sure it's just another IgG/IgE test which will almost certainly come back elevated, because they always do.

So, what to do? Well, like anything else, if it is indicated, we'll give it a shot. Compared to ACTH injections, the ketogenic diet, and all the other torture he's been through, cutting out Bertrand's dairy would be a cinch.

Utah Natural Medicine

2011-11-10T21:22:00.001-08:00

Bertrand's new treatment plan which I'll detail tomorrow.

Today was Bertrand's first appointment with Matthew Burnett, a naturopathic doctor at Utah Natural Medicine. In many ways, it was just like any other doctor's appointment: there was an obscene amount of paperwork, an exam, some blood work (you know Bertrand can never escape blood work)... But, something remarkable also happened: Dr. Burnett actually read the huge stack of papers I filled out! I don't think that has EVER happened before! (Is that sad or what?) I wish I'd taken more time and care with the answers, but I'm a bit jaded when it comes to medical forms. I wasn't about to get a cramp in my hand for no good reason.

I'm not going to lie. It was nice.

Dr. Burnett actually read what I wrote and listened when I spoke. He also spoke to Bertrand and was respectful--talking through the exam with Bertrand and including him as much as possible. (That's pretty much the straightest path to cool points in my book.)

All the weird symptoms*--which I'd mentioned to other doctors since Bertrand's birth but been assured were "normal" or "normal for a special needs child"--got dredged up. And FINALLY someone agreed with me that they were NOT NORMAL and it was not acceptable to ignore these symptoms--to "sweep them under the rug"--because Bertrand is a special needs child.

Hallelujah? Rejoicing? Well, maybe I'll admit to a little happy dance, but, like I mentioned above, I am kinda jaded when it comes to the medical establishment--no matter how granola. If/when I see results, then we'll talk. But, wow. I'm not sure if I can't believe it's come to this? Or if I can't believe it took me so long?

We've put Bertrand through hell, but all this guy wants is for Bertrand to get a finger prick, get some head massage and drink some smoothies**? I'm down with that. And, for the record, so is B--he now likes smoothies. :)

---------------------------------------------------------

*The weird symptoms include but aren't limited to the lack of tears, the blue sclera of his eyes, repeated styes, cold hands/feet, constipation, and more.

**The terms head massage & smoothies, for craniosacral therapy, detoxification and protein, vitamin and mineral therapy, are a gross simplification, but I don't think Bertrand cares enough to tell the difference.

Growth Measurements (10/31/11)

2011-11-09T11:45:00.000-08:00

Height: 106.5cm, 88th percentile!

Weight: 16.58kg, 62nd percentile!

Weight/Height: 22nd percentile

BMI 14.61, 15th percentile

OFC: 47cm (microcephalic)

These measurements are from Bertrand's genetic/metabolic appointment.

Bertrand definitely doesn't suffer from failure to thrive. :)

They want us to cut his calories by 10% more. :(

Family Portraits 2011

2011-11-02T08:00:00.000-07:00

Last month, we turned Victoria's 6 month portrait session into a family portrait session.

We were terrified of how these photos were going to turn out!
We don't sit for photos. We SURVIVE photos. (Don't believe me? See yesterday's school portrait.)

I thought this post's title was going to be: "2 zombie parents with 2 demon children". Victoria had refused to nap that day after a very rough night (her 2nd tooth erupted the following day), Bertrand was in a cyclical meltdown from overstimulation at the park, and Matthew and I? Well, we felt a bit "frayed"--to put it lightly.
We shouldn't have worried. Staci, our photographer, is an absolute magician! We love her!

*********
(A couple of these photos will likely end up in our yearly holiday ~~spam~~ card. If you're not on our card list, let me know if you'd like to be.)

A "Smile" Worth Sharing

2011-11-01T10:34:00.001-07:00

Bertrand's school picture. Can you say "retake"?

Halloween 2011

2011-10-31T19:14:00.000-07:00

"Hey Mama! We're both pumpkins!"

"What do you mean, I'm not allowed to eat leaves?!"

"I look dashing in my hat."

"Are you suuuuure I can't eat leaves? They look and sound so tasty."

"Okay, then I'm taking my hat off so I can eat my hat!"

At the last minute, Victoria and Bertrand had to abort the plan to wear their new halloween costumes because the new costumes were HUGE. (I'm going to keep the identity of those a surprise because they'll wear those costumes next year.) So, Bertrand reprised his role as Elmo from last year and Victoria rocked the baby pumpkin outfit--Bertrand's 1st halloween costume. :) The kids looked precious!

Bertrand was halloweened-out after his school party, but Victoria had plenty of energy left to enjoy the holiday. We went lights-out at 8:30pm after passing out 80 treat bags! We saw lots of great costumes and caught-up with many of our awesome neighbors.

Happy Halloween to everyone!

Intensive Therapy: Week 3 Recap

2011-10-28T20:34:00.000-07:00

Bertrand completed his 3-week intensive physical therapy session at Now I Can.

It was wonderful! We can't wait to go back!

Until then, the folks at Now I Can sent Bertrand home with a lot of goodies.

Personalized exercise plan.

Certificate of completion.

Awesome report card.

Fashionable "Now I Can" t-shirt.

Lovely notes from his therapists, Sergio and Natalie.

And, stickers and cupcakes from Natalie!

Oops! The cupcakes disappeared. How did that happen? ;)

Bertrand will also receive a video of his time at Now I Can. I'll be posting the video once I receive it and once both my teeny bosses permit. :)

Wordless Wednesday

2011-10-26T19:07:00.001-07:00

(Only 2 days of intensive therapy are left.)

Intensive Therapy: Week 2 Recap

2011-10-21T20:49:00.000-07:00

Bertrand just wrapped-up week 2 of his intensive physical therapy session at Now I Can. With one week left of treatment, he is sitting longer, his back is straighter, and his legs/hips look better. The experience has been great, and I am a convert to both intensive and neuro-developmental therapy (NDT) treatment models. Next week, I hope to take some pictures/video of Bertrand's progress. He is slated for another 3 week session at Now I Can in May 2012. Until then, I am hoping to find a NDT certified therapist closer to our home for maintenance.

Remembering Great-Grandpa Bud

2011-10-19T19:36:00.000-07:00

Bertrand's great-grandpa "Bud" (Matthew's grandfather) has passed away at the age of 90.

These photos are a brief remembrance of the Might-family patriarch, who until mere weeks ago could ride his bike for miles and benchpress a great-grandchild.

Bud served in combat as a decorated Air Force pilot from World War II through Vietnam.

His quiet sense of duty, honor and loyalty made him the prototype for four generations of Mights.

His quick wit and natural charm made him loved, and now missed, by all who knew him.

We are so very happy that both Bertrand and Victoria had the opportunity to spend time with this extraordinary man.

Dancing with the Star (Cart)

2011-10-18T21:00:00.000-07:00

Bertrand has been using a donated Star Cart at his dance class. Since the Star Cart is no longer manufactured, he now has a very similar Ready Racer of his own! We're hoping he'll learn to push his own wheels in it, opening up the possibility of using a self-propelled wheelchair in the near future!

Notes From a Dragon Mom

2011-10-16T15:25:00.000-07:00

Alexandra Huddleston for The New York Times

Emily Rapp and her son, Ronan, who has Tay-Sachs disease.

"Notes From a Dragon Mom" By EMILY RAPP

The New York Times: October 15, 2011

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

November is Epilepsy Awareness Month

2011-10-14T17:00:00.000-07:00

The Epilepsy Association of Utah is kicking off Epilepsy Awareness month! Here are some of the events:

October 20th & 21st - UEA (Utah Education Association) Convention and Education Exposition

at the South Towne Exposition Center in Sandy.
the largest professional conference for educators in Utah
provides dozens of professional development workshops for K-12 educators
keynote speakers
a New Educators’ Workshop
the Idea Fair
hundreds of vendor booths, including the Epilepsy Association of Utah!

promoting awareness of Epilepsy to teachers, which will enable them with...

knowledge of how to deal with seizures in the classroom
ability to discourage oppressive and stigmatizing comments made by classmates

so other students can get seizure smart as well!

ability to give rescue medication for long-lasting seizures
knowledge of awareness activities, events, and conferences

October 22nd - Halloween Carnival, called Whispers in the Park
The Annual Halloween Carnival is an awareness and fundraising campaign, held in October, to celebrate the Spirit of All Hallows Eve. Halloween is a time of celebration and superstition. Of shorter days and longer nights, of roaming between life and death. It's a time when we shed who we are and become the playful, frightening things we have always wanted to become. With gentle whispers, the Epilepsy Association of Utah is taking the superstition and mysticism out of living with Epilepsy and putting those things where they belong: Halloween.

at West Jordan Memorial Park
from 11:00 am to 8:00 pm
Raffles
Vendors
Live Performers
Battle of the Rockbands (the game!)
Cake Decorating
Costume Contest
Games & Activities
Photos
and MORE!

November 3rd - Artilepsy: Visualizing Hope

Free Art Galleryby people of all ages who are affected by Epilepsy.

With statistics of 1 in 26 people developing Epilepsy, we are all affected by it, so there is no reason to not enter in your creation, no matter the media type. :D

Entries due October 22nd
Many Mediums

computer assisted graphics
creative arts (home crafts)
fine arts (paint, pencil, watercolor, oils, etc)
music composition
photography

Be sure to read through the description on the facebook page to access the entry forms and other deatils. (Link to facebook is above.)

November 4th - Night Among the Stars Gala
Come and celebrate a black tie evening and dinner to help Utahn's dealing with epilepsy. Dinner will be held at Noah's in South Jordan, Utah. Tickets are available for $100/plate or $700 per table of eight. We will be also selling gold and silver dedication stars for $10 and $24 each which will hang at the gala. Let a loved one know you think they are a star! Click on the link above to register.

November 5th - Seizure Smart Education Conference.
This is a great opportunity to come and meet with a few neurologists and find new information from the medical community. It is also a great place to get outside references. We will have the privilege of hearing from Glenn Fenster. Glenn has bicycled six times across the United States to raise awareness for epilepsy on behalf of his son and all those affected by epilepsy.

at the U of U Neuroscience Building
9:00 am to 1:00 pm
FREE to attend
get seizure smart
workshops/classes to educate yourself and others about Epilepsy.

including a breakout session with Holly E. Ferrin about dealing with the social stigma and oppressive forces of Epilepsy.

Born to be wild.

2011-10-13T21:17:00.001-07:00

Bertrand and his physical therapist, Sergio, had a lot of fun playing on this motorcycle parked next to our van!

Sergio can turn anything into an opportunity for physical therapy!

Of course, it also helps that Bertrand has a history of riding motorcycles. ;)

Part Boy. Part (Kinesio) Tape.

2011-10-12T14:50:00.000-07:00

Can you spot the differences in his hip, leg and foot positions?

Today began Bertrand's kinesio tape therapy as part of his intensive therapy session at Now I Can. The application process was so amazing that I took 153 photographs. The tape was applied to his legs, feet, pelvis, back, upper arms and even his face!

Tape aiming to stabilize Bertrand's pelvis and correct some scoliosis.

And, this was just Day One.

Can you spot the world's cutest cheerleader?

The kinesio tape will eventually be applied to his arms, hands, and abdomen as well. This was drastically different from his first experience with therapeutic kinesio taping waaaaaay back when.

...and so began the legend of dread pirate Pink Beard.

(We'll see if the tape helps to lessen or stop Pink Beard's drooling.)

First Full Day of Intensive Therapy

2011-10-11T19:25:00.001-07:00

Bertrand's goals and therapy schedule. Shooting for the moon...

Today was Bertrand's first full day of intensive therapy. He did GREAT! Bertrand ended up missing both school and dance class from utter exhaustion.

Heck, we are ALL wiped out! So, this post will be low on explanation but high on photographs. Check out Bertrand in the "spider cage" below. Pretty neat, right? :)

Intensive Therapy Evaluation Day

2011-10-10T16:04:00.001-07:00

Today was Bertrand's evaluation and neurosuit fitting at Now I Can intensive therapy center. I am in awe of how thorough the therapists were! They took full measurements, did range of motion tests, took photographs, took video, asked lots of questions, fitted the neurosuit, worked with him... and even more amazingly, Bertrand tolerated it all well! I feel that they established a solid baseline from which we can work and measure progress from.

Bertrand went to school after the therapy and, while he took a brief nap there, he was alert and happy when I picked him up. He has been talkative and happy since got home. (We've read his new book "Llama Llama Red Pajama" way too many times already.) I don't know how he is still awake. Matthew and I have been up since 5am and we're ready to drop--but we're so proud of our boy! He has come a LONG way from last year!

The neurosuit includes arm bands too. It's amazing. I'll get more pictures over the next 3 weeks.

News Article: "Double Blind"

2011-10-06T10:58:00.000-07:00

"Double Blind: The mother of disabled twins doggedly pursued the root of her children’s illness and found it in their genome profiles."

By Cristina Luiggi | The Scientist | October 1, 2011

The Beery family, standing before the sequencer that decoded the genomes of twins Noah and Alexis.
At two years of age, fraternal twins Alexis and Noah Beery had not met most of their developmental milestones and had such poor muscle tone they could barely walk or sit on their own. Noah drooled and vomited continually, and Alexis suffered from body tremors during which her eyes would roll back in her head for hours at a time.

An MRI scan had revealed damage in the periventricular area of Noah’s brain, which led to a diagnosis of cerebral palsy. But children with cerebral palsy tend to improve with treatment; in contrast, the twins’ conditions, particularly Alexis’s, worsened over time. When she was 5 years old, Alexis developed respiratory problems and continued to have protracted seizures. She also had extreme difficulty walking and was always off balance.

The twins’ mother, Retta Beery, was most puzzled by the fact that Alexis’s symptoms seemed to fluctuate during the day—they were mild in the morning and became more severe as the day progressed. “By 11 o’clock in the morning she was unable to sit up and unable to swallow,” Retta says. “But if I put her down for a nap, when she would wake up she could function again.”

Tired of bouncing around from specialist to specialist, Retta embarked on an exhaustive review of the medical literature. Then, one spring night in 2002, she stumbled upon an old photocopy of a 1991 Los Angeles Times article that described a young girl whose condition had uncanny parallels with Alexis’s. The girl, Kimberly Nelson, had been diagnosed with cerebral palsy, and the severity of her symptoms ebbed and flowed throughout the day.

John Fink, a neurologist at the University of Michigan, had determined that Nelson had been wrongly diagnosed with cerebral palsy. The fluctuations in her symptoms instead were due to a rare and poorly understood genetic disorder called dopa-responsive dystonia (DRD)—a movement disorder caused by a deficiency in the neurotransmitter dopamine.

Five weeks later, Alexis and Noah were in Fink’s office, and the doctor prescribed Alexis a daily dose of levodopa (a synthetic dopamine).

“That was the first night in Alexis’s life that she slept through the night,” a tearful Retta says. In fact, the following days were filled with many firsts for the five-year-old girl: the first time walking to the car unaided and the first time she didn’t need assistance when eating, for example. “We knew that we were witnessing a miracle,” says Retta.

A few months later Noah’s right foot started to turn in and his head involuntarily tilted down. Beery and Fink recognized it as the onset of DRD and started him on levodopa as well. Not only did the drug correct his posture, but after six years of vomiting every day, “Noah stopped throwing up,” his mother recalls. Except for taking medication, the twins began living normal, active lives, playing sports and excelling in school.

But a few years later, in 2005, Alexis developed a severe night cough, and two years ago it worsened dramatically to the point that she had to inhale a synthetic adrenaline compound every day in order to breathe and sleep normally.

Desperate to get to the bottom of her children’s mysterious illness, Retta asked her husband, Joe, who had recently become the CIO of Invitrogen (now Life Technologies), to look into the possibility of having the twins’ genomes sequenced.

In the fall of 2010, the twins’ blood samples were sent to the Baylor College of Medicine’s sequencing center, where they were analyzed by a multidisciplinary team of researchers and physicians and compared to the samples from their parents and close relatives. The researchers found that the twins were compound heterozygous: each inherited a nonsense mutation from the mother and a missense mutation from the father, with both mutations occurring in different regions of the gene that codes for the enzyme sepiapterin reductase (SPR), which catalyzes the production of a cofactor—tetrahydrobiopterin (BH4)—necessary for the synthesis of the neurotransmitters dopamine and serotonin.

Not only were the twins deficient in dopamine, but they were also producing dangerously low levels of serotonin. When the doctors added 5-hydroxytryptophan (5-HTP), a serotonin precursor, to their treatment regimen, Noah’s drooling and motor skill problems vanished and Alexis’s breathing went back to normal.

Alexis, now 14, was able to run track (and place in the top three) in her spring semester, and Noah played volleyball in this year’s Junior Olympics.

“For the first time, we based a medical management treatment on a molecular diagnosis that was established through genome sequencing,” says James Lupski, a geneticist at Baylor College of Medicine who led the copy number analysis of the twins’ genomes. He adds, “This was no brilliant doctor, this was no new technology. This was a mom trying to figure out her child.”

Spirit of the Law vs. Letter of the Law

2011-10-05T08:13:00.000-07:00

A while back at Shriners, I high-fived a teenager wearing a t-shirt with a wheelchair symbol that said "just in it for the parking". I thought it was hilarious. After all, that kid and Bertrand are obviously NOT in it for the parking. Both would gladly give up the parking "privilege" in a heart beat (heck, make that "gladly park in the furthest possible parking spot forever") in exchange for the ability to walk!

Sadly, it appears that some people really are "just in it for the parking".

At Bertrand's school, some grandparents (with disability placards) are taking up the only 2 accessible spots--right next to the wheelchair ramp. They just sit in their cars, waiting for their able-bodied grandkids to walk to their car. Or sometimes they get out and walk (no cane, walker or wheelchair necessary) to sit under a tree and read their books. They get there early enough to take any of the first row spots, but choose to take up the only two accessible parking spots in the lot.

They've beat me there at least 6 times now.

I've had to park 3 rows back and weave Bertrand through the crowded lot, with Victoria strapped to my chest. Then leave him unattended at the back of the car, exposed to traffic because there is no room to pull him up next to our minivan while I unstrap Victoria. (Thank goodness it isn't snowing yet!)

I've wheeled Bertrand sloooowly past them--so they've seen who they are screwing over.

The principal has gone out and spoken with them.

They are still parking in the spots.

It is their "right". And, they are correct.

But, it is a blatant disregard for the spirit of the law in favor of the letter of the law.

I go out of my way to avoid parking in van accessible spots (and accessible spots period) if there is decent parking available--so it will be available for others who need the spots. I never park in accessible parking unless Bertrand is with me AND getting out of the car. It took until I was 7 months pregnant with Victoria, hauling an almost 40-pound Bertrand AND a 50-pound wheelchair before I broke down and got the disability placard. I would never, ever abuse it.

This situation with the school parking blows my mind.

That said, the school (administration, teachers and aids) have been fantastic. Everyone has been helpful and they've come up with a solution for Bertrand: his own parking spot.

It is sad that it has come to this.

Maybe some day in the future, those people who currently park and sit in the accessible spots will be so old that they actually won't be able walk anymore. They'll be wheelchair-bound, needing to get somewhere. It'll be snowing--but all the accessible spots will be taken. And then they will have to park at the far end of the parking lot.

Maybe then they'll understand.

Another Busy October

2011-10-04T16:57:00.000-07:00

Bertrand at his dance class today.

Every year, October ends up being the craziest month. This year is proving no exception. I just got a call from Now I Can, the intensive therapy program in Provo, Utah. They have an opening for Bertrand... NEXT WEEK!

So starting next Monday, October 10th for three weeks, Bertrand will have therapy in Provo from 8:00am to 12:00pm Monday through Friday. He'll also have school back up in Salt Lake City from 12:40am to 3:10pm. On top of that, he has dance class on Tuesdays from 3:30pm to 4:30pm, hippotherapy on Saturdays in Park City from 11:20am to 12:00pm, and therapy at Shriners on Fridays from 1:00pm to 2:00pm.

To preserve my sanity, I'm going to cancel/move Bertrand's therapies at Shriners. I am also going to temporarily bow out the MOMS Club playgroup (I don't think Victoria will care too much yet), as well as cancel/move several doctors appointments. With Matthew's travel, pre-emptive sanity preservation would be a good idea anyhow.

Fingers crossed that I don't run into any more meanies!

A mean man made me cry.

2011-10-01T19:52:00.001-07:00

Today, I took Bertrand and Victoria up to Park City for hippotherapy. Matthew is out-of-town, so I've been in what I call "sanity preservation mode". I do only what needs to be done, go to sleep early, and stay home as much as possible. Bertrand's hippotherapy, which he loves, is one of the few "must do" items.

(He did great, by the way!)

On the way to the National Ability Center, where Bertrand rides, there is an outdoor athletic complex. There was a soccer tournament going on with a lot of high schools. People were all over the road, so even though the speed limit is 15 MPH, the going was slower than that.

I drive up to a clump of people, kids and adults, blocking the road and stop. All but one man quickly scoot to the side of the road. The middle-aged man is wearing a simple white polo-shirt and looking off into the distance, hands at his sides. I look at where he is looking and see nothing. I assume he simply hasn't seen me, so I roll down the window and simply say, "Excuse me, sir. I am trying to get to the National Ability Center." He turns, his face gets flushed and literally screams at me, "Wait a minute, will you!"

Ooookay. Luckily, we're almost 15 minutes early. I'm in no rush.

We sit there. For just over a minute. The song playing in the car radio finishes (both kids like music and it soothes the savage teether) and a new song starts. I am starting to get a bit baffled. What are we waiting for?

Two girls in soccer uniforms finally come running over the hill. The man, hands on his hips, finally turns to give me a dirty look. I take that as a dismissal/permission-to-proceed of sorts.

Now, there are races here all the time. I am used to seeing them. Usually the officials have special t-shirts, usually someone is holding a stop sign, or at the very least holds their hand up for incoming traffic to indicate "stop". And then waves cars through to indicate "go". No screaming has ever been necessary. Just some arm motions.

So, as I get ready to drive on, I stutter an apology. "I'm sorry. Usually there's a sign or something."

For this, I got another mean look and a muttered, "bitch".

Ooookay.

I cried all the way up to the NAC. I sat in the car to feed Bertrand a snack while my face un-blotched.

The staff at the NAC commiserated. Lots of them had been stopped for the mini races going on that day. Clearly, mine wasn't the first incoming car that guy had to deal with. Maybe he'd been the one at it all day. Maybe they were understaffed and that's why he was stuck dealing with traffic. Maybe his team had lost. Maybe a player of his got injured. Maybe he misunderstood my question or my tone of voice. Maybe he hates Toyota Siennas...

No one else took his bad attitude (then again, I seemed to have born the brunt of it) as badly as I did.

Heck, normally I may have brushed it off myself. But there I was, surrounded by all those able bodied kids playing soccer--just like I once did. Just like I'd once imagined that Bertrand would. And, instead, here I was getting screamed at while taking my severely disabled son to get therapy on a horse--the closest he'll get to a sport.

It's just not fair. And sometimes it gets to me.

So, at Sabrina's brilliant suggestion, I had a beer (which I never drink) with lunch.

And then we hit the outlet mall--for another type of therapy.

(I was emotionally very fragile at the time, honey. It was the mean man. He made me shop.)

Anyway, I feel much better now. :)

It's amazing what asking for help can do!

2011-09-29T21:04:00.001-07:00

Today, a mere week after the initial email to the mayor's office, there was a road crew working in our alleyway. Bertrand has some thank you notes to write! Look at all those wheelchair swallowing potholes: filled! :) School bus, here he comes!

We are extremely grateful to live in a city where it is obvious our son is so loved & valued!

Intensive Therapy & School Bus Follow-up

2011-09-27T05:33:00.000-07:00

INTENSIVE THERAPY: Last Friday, Bertrand was evaluated for an intensive physical therapy program located in Provo, UT called Now I Can. By the end of his 30 minute evaluation, the therapist had Bertrand on his knees, free standing.

We were sold.

Bertrand will be starting the program on January 2 for 3 weeks, 4 hours a day, 5 days a week. (This was their soonest available opening.) We've set an ambitious goal for him: mobility. We have to strike while the iron is hot. After all, who knows how long this seizure control may last? Unfortunately, this means that Bertrand will miss the first 3 weeks of school next year, but we hope that this program will be worth it!

SCHOOL BUS: Last Thursday, Bertrand, Victoria and I took a walk down our alleyway with the mayor's office ADA coordinator, Michael Stott. Michael was very compassionate and attentive. He has asked the City's pavement manager to look at the alleyway. Now we're just waiting to hear back. My understanding is that our neighbors will have to agree to and pay for the improvement. I'm not sure that will go over well. I'll be speaking with Bertrand's teacher about some of the alternatives at our upcoming parent-teacher conference.

A gratuitous Bertrand video.

2011-09-21T14:41:00.000-07:00

Bertrand stayed home from school today with a cold. But, he still managed to have lots of fun!

Can Bertrand ride the school bus?

2011-09-20T20:00:00.000-07:00

There are so many reasons why I love Bertrand's "Dancers with Disabilities" class! Not the least of which are the people we meet there and the wealth of special needs information that gets exchanged. Below is the email I just wrote to our constituent liaison, at the encouragement of one of the volunteers in the class.

My family and I live in district 4. My 3 year-old son, Bertrand, has many disabilities and is in a push wheelchair. He attends the special education preschool program at Ensign Elementary.

Bertrand can't ride the school bus because the alleyway behind our house is unaccessible--it is far too uneven and rough. He practically got launched out of his wheelchair the time or two we have attempted it. We tried putting bigger front wheels on his chair to help with the bumps in the alleyway to no avail. (The front of our house is facing a steep hill with many steps & no ramps, so it is unaccessible as well.)

Basically, there is no access for him from the house to the sidewalk to get to the bus. So, I currently drive him into school Monday
through Thursday, but it breaks my heart that he can't ride the bus like the other kids. He would love it.

Is there a way for the city to pave the alley so Bertrand could get to his school bus? As far as I know, it is public property.

Thanks for your time and consideration!

Victoria in Venice

2011-09-19T14:50:00.000-07:00

This year marked our 8th wedding anniversary. In celebration, Victoria and I tagged-along on Matthew's business trip to Venice, Italy. We were there for the past week.

Sadly, we were unable to take Bertrand on the trip. Bertrand couldn't miss school. (Besides, as we discovered, Venice is quite possibly the least accessible city ever!)

Fortunately, Bertrand was spoiled rotten by his grandparents for a week. Even knowing this, the three of us missed him terribly. Hopefully, with his continued improvement, he'll be able to visit Italy with us some day!

Here are some pictures from the trip--most are of Victoria. She was fussed over by every one--especially each Italian nonna she encountered. She also handled the plane flights like a pro. She turned 5 months-old in Venezia and celebrated with her first gelato!

Bertrand discovers fire.

2011-09-08T19:19:00.000-07:00

Here are more pictures of Bertrand's fantastic weekend! After a quick dip in the pool with his Papa, Bertrand warmed his little toes by the fire. He had never shown interest in the fire--or signs of being able to simply feel warmth--before this day. But, he now LOVES the fire pit! You can see him laughing away with his Nana and Papa. (Click on any picture to see Bertrand's face close-up.) I think I see roasted marshmallows in his future. :)

Timeline

2011-09-07T08:00:00.000-07:00

At Bertrand’s neurology appointment last week, the doctor laid out the following timeline:

Follow-up appointment in 4-6 months
Revisit medication in 4-6 months
Repeat EEG in 6 months
Repeat MRI in 2-3 years

I’ll admit to feeling some frustration upon hearing this but, as I noted in an earlier post, some times it takes doctors a bit longer to get on the right page. ;)

Fortunately, the neurologist is no longer key to understanding Bertrand’s case management. She never was. Bertrand was the key.

While some extra non-invasive tests, like an EEG & MRI, would give me peace of mind and validate the vitamin deficiency theory, these test are not necessary. I can see, with my own eyes, Bertrand’s seizures disappear, and I can see him progressing developmentally.

This is just a crazy theory, but I think that if we didn’t completely miss Bertrand’s growth spurt, his head measurement may increase since being on the vitamins B12 and A. He has microcephaly (his head measures 48 cm), but that can be caused by B12 deficiency. In young B12-deficient children, the microcephaly can correct itself in a few months with supplementation. I hope this is the case with Bertrand.

Last but not least, Bertrand’s seizure medications have already been decreased (without MD buy-in) with no additional seizures. And, in another few weeks, given continued seizure freedom, we will cautiously and slowly reduce the medication further. I would love to have a doctor’s help with this, but she wants us to wait months just to discuss the drugs!?

Despite the fact that Bertrand has been on Lamictal since November (9 months) and Depakote since February (6 months), she implied that the sudden disappearance of Bertrand’s seizures, within one week of starting the vitamin-B12 in late August, was most likely due to the lamictal and depakote! If we don’t lower the drugs ourselves, Bertrand’s neurologist will claim that the drugs are to thank for the seizure control. And, she is wrong.

She is not listening to me. If she doesn’t listen to me, then how can I listen to her?

First Day of School (2011-2012)

2011-09-06T22:34:00.000-07:00

When Bertrand gets asked to smile, this is his interpretation.

Don't you just love Bertrand's "smile"? He was so excited for the first day of school! He recognized all of his teachers and did really well! He was alert for most of the time, bore weight on his legs, and socialized lots.

His physical therapist at the school wants to bring in a C.P. walker (which I guess is a kind of gait trainer?), to get him moving around, and a stander, so he can stand for some table work. I am excited to see how he does for her! (He tends to last longer for others than for me because he knows I am a pushover.)

After school, we rushed over to dance class (he ate a snack in the car) and he lasted for 45 minutes before passing out asleep. He was cheerful the entire time.

What a positive change since last year! My boy is all grown up. ;)

Oktoberfest 2011

2011-09-05T17:05:00.001-07:00

Bertrand dances the polka at Oktoberfest.

Family Fun

2011-09-04T17:56:00.000-07:00

Enjoying labor day weekend.

Vitamin A Deficiency

2011-09-03T07:33:00.000-07:00

Everyday since beginning supplementation, it has become crystal clear to us that Bertrand was extremely deficient in vitamin A.

We have seen a lot of changes in Bertrand and, almost every time we google, it turns out that vitamin A is involved.

Vitamin A is important for more than just tears. Pretty much every moisture producing gland in your body (and there are LOTS) uses vitamin A.

So what are some of the changes we see in Bertrand? (Beware, there may be TMI for some.)

Tears - Self explanatory.
Styes - These are blocked oil glands in the eye lid. Now that the oil glands in his eye are coming back on-line, he has had at least 10 of these bad boys. I have to scrub his eyelids twice daily so they pop on their own. Lovely, right?
Cradle cap - Also known as seborrhoeic dermatitis, this is caused by overactive oil glands in the scalp. It has gotten better after using Head & Shoulders shampoo, but there are still plenty patches left to pick off. Double lovely.
Cough - Turns out that the lung has moisture glands that help with respiration. If they are going into overdrive like all his other glands, I can imagine it's uncomfortable. He is coughing a LOT. Maybe all the productive hacking will FINALLY get rid of that patch in his lung from pneumonia over a year ago. I can hope, right? (Coincidentally, his oxygenation high value rose from 95% to 100% for the first time. This may also be B12.)
Snot - Oh. My. Goodness. There are rivers flowing from this child's nose for the first time EVER. I wipe his nose, turn my back for 2 seconds, & turn back to see his face covered again. Every tissue box in the house is depleted. Moving on...
Bowel movements - He is having at least one every day--no miralax needed. They seem to have a coating?! Google... yup, your intestines all have mucous glands. I'll stop here.

I didn't even realize how weird (and time consuming) it was to slather my child in Cetaphil and Aquaphor multiple times a day, shove Ayr up his nose nightly, add Miralax to his drinks, set-up the humidifier in his room, put drops or ointment in his eyes every 2 hours... until now.

And, to be honest, I am angry. Furious, even.

It's more than the scar on the cornea of his right eye. It is every strained bowel movement he suffered. Every time we had to pin him down, screaming, to put drops in his eye, or dig un-yielding snot rocks from his nose. Every cold he couldn't shake. Every hospitalization. Every tear he couldn't shed.

All the pieces of the puzzle were there. So why did I have to be the one to put it together?! We've paid "experts" hundreds of thousands of dollars to poke & prod my poor child. And, at least for these symptoms, a simple vitamin supplement was what he needed all along?!

I am horrified. And, not just for Bertrand, but for all the other children and their parents, who are also overwhelmed, but lack the energy, stubbornness or chutzpah necessary to second guess the experts.

"It's worth entertaining the hypothesis."

2011-09-02T21:19:00.000-07:00

Best friends.

At yesterday's appointment, Bertrand's neurologist didn't shoot down my proposed thesis! Her exact words were: "It's worth entertaining the hypothesis." I'll take it. It's way better than the facepalm I was expecting. :)

She referred me to Bertrand's GI doctor for vitamin deficiency and dosing issues. He responded quickly, but his answers sounded like he really didn't understand the question: "Could a prenatal hepatic insult result in severe vitamin A & B12 deficiencies?"

I've come to the conclusion that I finally don't care if the doctors are on the identical page as me. They will eventually catch up. I know what needs to be done. I've got my 10,000+ hours worth of expertise in Bertrand.

That said, I am utterly exhausted from playing with 2 active, happy kids all day! More videos, pictures, and explanations will have to wait just a bit longer.

Have a happy labor day weekend!

Cookies for Cole!

2011-09-01T12:04:00.000-07:00

Michael, Josh, Bertrand & Sophie working the crowds

before the football game, raising money for Cole.

This afternoon, Bertrand and our fabulous neighbors, Michael, Josh & Sophie (plus their mom and dad), held a "bake sale" for our good friend, Cole. The kids were touched by Cole's plight and took to finding ways to help him. They raised money at their school and at the football game today. We are so lucky to have such caring, generous and creative neighbors!

This fundraiser was so easy and fun. We may do another sale later this month. (The official "Cookies for Cole" day is September 17th, but we couldn't miss the opportunity presented by the Ute's first PAC 12 game!) I hope others also help by holding bake sales for little Cole, or contributing in any way. Go Utes! ;)

Thank you!

2011-08-31T22:16:00.000-07:00

I would like to thank, from the bottom of my heart, everyone who has commented, emailed, phone called, or text messaged their support! Apparently, you all don't think I am completely nuts! I really appreciate it and Bertrand does too. :) You have all bolstered my courage for tomorrow's "thesis proposal"!

Plenty of pictures & video of Bertrand will be coming soon--I promise. But, tonight I am busy preparing the documentation to present to Bertrand's neurologist in the morning while baking for the Cookies for Cole bake sale in the afternoon. We're hoping to scoop-up sales from with the Univ. of Utah football traffic. If you have the urge for something sweet, you should stop by! :)

Speaking of sweet, here is a video of Victoria's first time in a jumper yesterday. She is an old pro at it now. Don't you just want to eat-up those chunky little legs?! She reminds me so much of Bertrand when he was this age--except that he was sitting better, barrel-rolling, and pulling himself to sitting. She has big shoes to fill. ;)

My "Ph.D.": A diagnosis for Bertrand

2011-08-30T09:13:00.000-07:00

Today, Bertrand saw a corneal specialist for his eyes. Followers of this blog know of Bertrand's protracted battle against corneal erosion and his alacrima (lack of tears) since birth.

The two ophthalmologists who saw Bertrand today, noted the scar on his right cornea but, other than that, found no evidence of corneal erosion. Bertrand did NOT have dry eyes.

Furthermore, at home, Bertrand has been crying tears. This is especially remarkable because Bertrand still had severe xerophthalmia (dry eyes) just four short days ago.

This was the second successful test of what I am calling "my thesis". If every parent claims to be the expert in their child, I am attempting to get my PhD in Bertrand Might.

MY THESIS:
Liver damage, resulting in vitamin B12 & vitamin A deficiency, induced developmental delays, neuropathy, seizures, and alacrima.

Now, please let me explain.

I believe that Bertrand was born with liver damage because the jaundice Bertrand had at birth was not severe, but he could not shake it on his own. He had so much difficulty that he was hospitalized in the NICU. Bilirubin, the cellular byproduct that causes jaundice, is usually processed by the liver.

This liver damage could be the result of an unknown genetic disorder or the result of an infection.

While I took the best of prenatal care with Bertrand (vitamins, diet, doctors appointments, etc.), I caught "colds" twice: once in the 1st trimester and once in the 3rd trimester. I was pretty miserable.

Bacterial and viral infections can cause liver damage. Obviously, the most well-known of the viral ones are called Hepatitis A, B and C, but Mononucleosis (commonly referred to as "mono") can cause liver damage as well, and there are others.

Such an infection could have damaged Bertrand's liver prenatally and possibly my own.

(This is a big assumption, but it can in part be tested by checking Bertrand for antibodies of liver damaging viruses & bacteria. Since he hasn't had such an illness in his life, the presence of such antibodies would have come from in utero.)

The liver is where vitamins A, B12 and D are stored. It holds approximately a 3 year supply of each. If this supply is damaged, one is reliant solely on diet. Bertrand's diet for the first 5 months was breast milk. I wager that my milk was low on these vitamins, and the amount of these vitamins found in formula just were not sufficient given any pre-existing liver damage.

And here is where things get a little perverse. Certain medications block the absorption of vitamins B12 and A: proton pump inhibitors and H2 receptor antagonists. These are the antacids also known as prevacid and zantac.

What was Bertrand's very first medication? You guessed it. Zantac, followed by Prevacid. (In hindsight, this is also around when his seizures started. Coincidence?)

Based on this, could Bertrand be vitamin B12 and vitamin A deficient?

What are signs of severe vitamin B12 deficiency?

Neuropathy
Movement disorder (chorea, twitching)
Seizures
Macrocytic anaemia

Obviously, Bertrand has these. Multiple nerve conduction studies, EMGs, EEGs and MRIs serve as evidence.

B12 is a primary component of the myelin sheath found on all nerves.

Do you remember the MRI which I posted a few days ago? That was a case of B12 deficiency and it closely resembled Bertrand's MRI.

B12 deficiency is almost always associated with malnutrition. It is not a first world disease. So, hematologically, it is associated with macrocytic anaemia, which can include folate, B6 and iron deficiency as well.

However, Bertrand's case is NOT one of malnutrition. Bertrand has plenty of the vitamins which don't require liver storage.

What does B12, and only B12, deficiency look like in the blood? It looks like really fat red blood cells (macrocytosis) and/or excess platelets (thrombocytosis), for unknown reasons.

Yup, at his last blood draw, Bertrand had elevated MCH and MCV (measures of macrocytosis). And early on, he had elevated platelets.

What are signs of severe vitamin A deficiency?

Nyctalopia - night blindness
Xerophthalmia - dry eyes
Follicular hyperkeratosis - a kind of bumpy skin

I don't know about Bertrand's night vision, but he definitely had xerophthalmia and follicular hyperkeratosis.

I say "had" because by this point, you can probably guess that we began vitamin B12 supplementation 2 weeks ago and vitamin A supplementation 4 days ago.

With vitamin B12, he became more vocal and alert within hours. By day 3 his myoclonic seizures (jerks) stopped. By day 6, his night seizures stopped. By day 7, he was walking in his gait trainer. By day 11, we lowered his seizure medication and we have seen no seizures.

Back to today's ophthalmology appointment, that was the first test of the success of vitamin A. We could tell that his eyes (& skin) had improved some within about 24 hours, but we've proceeded cautiously with the dose. Unlike B12 which is water-soluble, Vitamin A is fat-soluble and can be toxic. We're being cautious not to overdose.

According to the medical literature, in cases of vitamin B12 deficiency, symptoms can be completely reversed--if caught early. EEGs normalize after about 5 weeks and there are MRI changes by 10 weeks.

Unfortunately, Bertrand's case, if it is one of vitamin B12 and A deficiency, was NOT caught early. We should assume that there will be permanent brain and nerve damage.

But that hasn't stopped me from shooting him up with omega-3 fatty acids for myelin sheath repair or researching intensive therapy options. As with most "scientists" (if I dare call myself such), optimism comprises my core. ;)

SO...

The way I see it, my "thesis proposal" is this Thursday, with Bertrand's neurologist. Then I get a few months to test and, in essence, watch "my dissertation" develop. And at some point, an EEG and MRI should serve as my defense!

And, better than any sheepskin diploma, I will get a healthy, happy son!

1st Annual Conference on Rare Diseases & Orphan Products

2011-08-22T10:25:00.000-07:00

Stellar Lineup of Speakers Announced for U.S. Conference On Rare Diseases And Orphan Products

Join all stakeholders – patient advocates, researchers, government, industry, investors – in this 1st annual summit featuring thought leaders and focusing on collaboration!

You are invited to the 1^st Annual U.S. Conference on Rare Diseases and Orphan Products to be hosted by the National Organization for Rare Disorders (NORD) and the Drug Information Association (DIA). Additional support for this conference is being provided by the Food and Drug Administration (FDA), National Institutes of Health (NIH), European Rare Diseases Organization (EURORDIS) and Duke University School of Medicine.

There will be separate tracks for patient advocates and organizations, researchers/drug and device companies, and investors. The conference will incorporate the well-received rare disease investigators training course offered by FDA for the first time last year.

NORD is the voice of the nearly 30 million Americans who have rare diseases. DIA is a nonprofit, global professional association of more than 18,000 members who are engaged in the discovery, development, and management of pharmaceuticals, biotechnology, medical devices, and related health care products.

The event will take place October 11-13 at the Omni Shoreham Hotel, Washington DC.

Speakers will include:

NIH Director Francis S. Collins, MD, PhD
Social Security Commissioner Michael J. Astrue, JD
John F. Crowley, Chairman and CEO, Amicus Therapeutics
Fred Hassan, MBA, Partner, Warburg Pincus, Chairman of the Board, Bausch and Lomb
Mark B. McClellan, MD, PhD, Director, Engelberg Center for Health Care Reform, The Brookings Institution
Frank J. Sasinowski, MPH, JD, Partner, Hyman, Phelps & McNamara
Jeffrey Shuren, MD, JD, Director, Center for Devices and Radiological Health, FDA
Janet Woodcock, MD, Center for Drug Evaluation and Research, FDA
Margaret Anderson, Executive Director, FasterCures
Kelly C. Slone, Director, Medical Industry Group, National Venture Capital Association
Suzanne L. Bruhn, PhD, Senior Vice President, Strategic Planning & Program Management, Shire Human Genetic Therapies

For patient advocates and patient organizations, there will be a separate track of presentations focused on strategic planning, growth, and effective advocacy for the patient community. In addition to the three tracks, all stakeholders will join together in high-level plenary sessions to discuss how the various interests can collaborate more effectively.

If you can only attend one rare disease/orphan product conference this year, this should be the one! It will provide a unique opportunity for thought leaders from all perspectives to address the issues and seek ways to drive progress toward safe, effective treatments for patients.

REGISTER ONLINE NOW!

Limited scholarship assistance may be available for patient representatives

Online registration for this unique event is now open on the DIA website. For representatives of patient organizations, limited scholarship assistance may be available. Patient representatives interested in applying for scholarships may write to Audrey Ashley at NORD (aashley@rarediseases.org) and request an application form.

There will also be limited exhibiting space for companies and organizations. Inquiries about this may be directed to Shannon Lewis at DIA (shannon.lewis@diahome.org).Tel 215 442-6149.

THREE TRACKS FOR PARTICIPANTS

Attendees will benefit from discussions on the FDA and NIH processes, health care reform, changes in insurance reimbursement, off-label issues, and de-risking investments. Specific topics for the three tracks will include:

For Researchers, Drug and Device Companies:

Senior medical officials from FDA and NIH will discuss product development, how to develop a new product, and how to comply with NIH grant and FDA approval requirements.

The conference will provide a platform for addressing the unique challenges faced by companies in the development of orphan products and how to avoid common pitfalls.

Industry leaders and senior agency officials will discuss how to work with federal agencies on everything from grants to orphan designation and clinical development to product approvals.

For Patient Advocates and Patient Organizations

Learn how you can become more effective advocates for the patients you represent.

Learn about the new and emerging federal policies that affect patients with rare diseases.

Learn how the government and private sector are addressing the special challenges faced by patients in the new health care environment.

Meet individuals who run patient organizations efficiently and creatively to advance the interests of patients and how best to organize for effective advocacy.

For Investors:

Explore the new concept of venture philanthropy and how it will affect research funding.

Gain a better understanding of how the FDA and NIH work and how they interact with the drug and device development processes.

Learn ways to de-risk your investments in orphan products and understand better the timelines for research and regulatory reviews.

Crying Tears.

2011-08-20T13:48:00.000-07:00

Bertrand is crying real tears. The only change in his daily regimen has been the addition of a B-12 supplement.

We are using a transdermal B12 patch and oral B12 supplement.

Of course, I've been on a research binge for the past few days. Here are some bits and pieces floating through my head...

B12 is stored in the liver. (Bertrand has liver damage.)
B12 is water soluble. (An overdose on B12 is near impossible.)
B12 is expressed in bile.
Actigall (ursodiol) is a bile acid. (Bertrand's liver has improved on actigall.)
B12 deficiency in infants causes movement disorder & developmental delay...

When Bertrand was a baby, we'd thought for certain that he was a case of B12 deficiency. His neurologists shot this theory down because of the important fact that Bertrand was/is not anemic. Folate can mask B12 deficiency, but he should still show some signs of anemia.

But this image is haunting me:

The MRI above is from THIS article, entitled "Involuntary Movements and Magnetic Resonance Imaging Findings in Infantile Cobalamine (Vitamine B12) Deficiency", published in PEDIATRICS: Official Journal of the American Academy of Pediatrics back in 2003.

Does "bilateral periventricular symmetric high-signal lesions in the white matter on T2-weighted images" sound familiar?

You can bet this will be discussed with Bertrand's pediatrician on Tuesday!

Corneal Erosion: Genetic Condition or Side-Effect?

2011-08-16T10:31:00.000-07:00

Victoria "styling" Bertrand's hair this morning.

This is just a quick update (read: vent) on what I've been up to regarding Bertrand. Since his keppra wean, he has been having the least number of seizures since ACTH! As a result, he is also more vocal and interactive. Unfortunately, the seizures that he IS having are sleep-related and disturbing to watch. More on that later.

All summer Bertrand's corneal erosion has not improved despite eye drops or ointment every 2 hours. In case you are wondering, that is $50 worth of eye goop every week. It is also a very upsetting process for Bertrand and time-consuming for us. And yet, I am plagued by the feeling that I am losing the battle to save his eyes. If he is this bad now, in the summer, with a humidifier in his room, how bad will it get in the dry Utah winters?!

I've been feeling defeated. It's not a feeling I am comfortable with, so I got to thinking...

It was not always this way. While Bertrand didn't cry tears (alacrima), he wasn't battling constant eye infections and corneal erosion. This all started back in January, before depakote, but a month AFTER ADDING LAMICTAL. A quick google search confirmed that dry eyes are a common enough side-effect of lamictal.

After leaving 2 messages with neurology and 2 emails to her, I finally heard back from Bertrand's neurologist last night. I feel like she blew me off. Bertrand's eyes and seizures could wait until she could see him at his September 20th appointment.

NO. WAY.

My baby boy has suffered long enough. Corneal erosion is extremely painful. As per my last discussion with his ophthalmologist, Bertrand is facing surgery to sew his eyes partially shut to reduce the amount of surface area and thereby the moisture he loses by them. As it is, his corneal scar is occluding his pupil and damaging his vision.

This is unacceptable.

Yes, seizures suck, but Bertrand needs to be seen as a whole. It is possible that depakote may be enough to control his seizures. Or maybe lamictal isn't to blame and he does need the surgery. Either way, we need to test and see because Bertrand deserves this chance.

I've spent the morning fighting for my boy, calling in the "big guns". Wish me luck.

UPDATE:

This afternoon, I spoke with Bertrand's Pharmacist (the one who once opened the pharmacy on a Sunday just for us, after we forgot to pick up his medication). According to him, Lamictal can cause dry mouth and other ocular issues, but "dry eyes" as a symptom were not in his literature. He recommended some eye ointments/drops that were new to the market. He also recommended a prescription about which we should speak to Bertrand's ophthalmologist.

From my own research, I learned that Lamictal is a (modest) inhibitor of the enzyme dihydrofolate reductase, which completes the two-step activation of dietary folate into the bioactive form, tetrahydrofolate. A B-12 deficiency would increase the adverse effect potential of the Lamictal. Dry eyes can be a symptom of B-12 deficiency...

So, TONIGHT, Bertrand starts some new sublingual vitamin B supplementation (THANKS, AMY!) and new eye drops. ;) Bertrand will see his pediatrician about all of this on Thursday. His neurology appointment was moved up a little earlier to September 1st. Grr.

Victoria turns 3 months old!

2011-07-23T13:55:00.000-07:00

A Tale of Mama's Instinct

2011-07-12T21:32:00.001-07:00

Titi Aury reads to Bertrand.

Remember back in March how Bertrand was facing the prospect of phenol injections in his right adductor muscle to help with his hip subluxation? How I cancelled the appointment just a few days beforehand because I didn't feel right about it?

Well, today was Bertrand's 6 month follow-up, and my actions were justified in a big way! His subluxation has stayed the same and, very significantly, his adductors are not tight AT ALL.

So, muscle tightness isn't to blame for the subluxation! Phenol injections would've been ALL pain for NO gain. Going forward, all we can do is keep him standing as much as possible & keep an eye on his hips. Surgery may still be in his future (but I doubt it).

To my great relief, Bertrand is being fitted for a soft back brace tomorrow to help with his spinal curve. Currently, it's a functional, as opposed to structural, curve. In 6 months, he is seeing a spine specialist & may move to either a corrective brace (worn at night) or a form of serial casting therapy.

My mommy spidey sense tingles with the belief that this posture correction may help Bertrand's hip more than just about anything. Let's see if I can go 2 for 2 on orthopaedics. :)

Visiting Great-Grandma

2011-07-02T18:21:00.001-07:00

Bertrand and Victoria went to visit their great-grandma today. She has not been feeling well, but seeing her favorite great-grandkids cheered her up! She enjoyed seeing the changes in Victoria, and there was no stopping her from feeding, playing with and reading to Bertrand! She is an amazing great-grandma. :)

A (tiny) happy dance.

2011-07-01T08:50:00.000-07:00

Bertrand working out with his "personal trainer".

Bertrand's gastroenterology appointment this morning was just the good news I've been needing to hear. Starting with Bertrand's stats, he measured:

39.5 inches (just above the 50th percentile for height)
36 pounds (just below the 75th percentile for weight)

I could've happy danced for these numbers alone! All of our hard work with his diet and exercise (standing, gait trainer, horseback riding, etc.) have paid off. We have only a few more inches taller (or pounds smaller) to go to reach normal weight-for-height!

Then, his Doctor came in and said that, looking at Bertrand's most recent liver enzyme levels drawn in May, if Bertrand had been a new patient he would've wondered why B would need to see a GI doc! His liver appears almost entirely normal!

We shared a laugh that Bertrand is probably the first person in history to have their liver enzymes DECREASE while on depakote. But, due to the depakote, the GI Doctor would like to continue vitamin D and carnitine supplementation to protect the liver.

However, he now feels that we can wean Bertrand's prevacid! (While watching for signs of reflux.) And, in 6 months, we can begin a cautious actigall wean as well! (While monitoring his liver enzymes.)

That may not seem like a lot, but 2 fewer medications (administered a total of 4 times daily) is 1 step closer to a more enjoyable childhood for my precious boy. And that's worth celebrating!

We're alive.

2011-06-16T19:51:00.000-07:00

We just got back from Bertrand's Aunt Sabrina and Uncle Steve's lovely wedding in Kentucky. We will post pictures and stories from the trip soon. In the meantime, this post is to say we're alive and back on the horse--figuratively and literally. Bertrand recommenced hippotherapy at the National Ability Center in Park City this afternoon. He had a great time with his new therapist, Jane. She'll be focusing on his tactile defensiveness.

Victoria also had her 2 month well baby check-up and shots today. (She's a cranky mess.) At the appointment, her pediatrician mentioned that Bertrand needed another shot since vaccination guidelines had changed (more strains added) since he was a baby. His compromised immune system makes any additional protection, while not required, a very good idea.

His pediatrician also mentioned wanting to re-check several of Bertrand's labs: Triglycerides, ACTH, and ALP. I'll explain more in a later post, but in the interim she will be speaking with a pediatric endocrinologist on Bertrand's behalf and sending lab orders afterward. This blood should be drawn in the next few weeks.

Lastly, Bertrand will begin his keppra wean tonight. He is moving down to 400mg in the morning and 300mg in the evening. We hope to see no increase in his seizure activity. An increase in alertness would be a plus. He should be finished with the wean by his neurology follow-up in September when we will look at adding topamax. Bertrand also has a confirmed 10/12/2011 follow-up at Cleveland Clinic's Epilepsy Center.

9 Month Post-Infusion Report

2011-06-06T14:19:00.000-07:00

Dear Dr. Kurtzberg,

It's been about 9 months since Bertrand's stem cell infusion. He is the happiest and most interactive he has ever been in his life! We don't know whether it's new medication (depakote), the stem cells or what, but, whatever the cause, we are extremely grateful.

Bertrand's most recent CMP on 5/27/11 had his ALT at 26 (normal range: 5-45) and AST at 63 (normal range: 20-60). This normalizing trend has continued in spite of increases in depakote. (His AFP is normal but his GGT is still elevated at 86, with a normal range of 4-15.)

In addition to his continued liver improvement, his smiles and his laughter, Bertrand has been re-learning skills and picking up new ones. He is learning to us eye gaze, as well as switches, to communicate his desires. He is vocalizing (I believe he has a word for Mama). He can raise his arms above his head for the first time, and he is again taking steps when supported or in a gait trainer.

He recently completed his first year of preschool and all of his teachers have remarked on the pronounced, positive changes they've seen in Bertrand since he started. We are very proud of him. :)

Warm regards,
Cristina Might

Last Day of the 2010-2011 School Year

2011-06-01T20:04:00.000-07:00

Today was Bertrand's last day of preschool for the school year. It was great! His teachers & therapists all commented on how happy and alert he'd become since he started school. :)

Bertrand qualified for extended school year services (summer school at home once a week) AND (drumroll please)...

FOUR DAYS OF PRESCHOOL NEXT YEAR!*

He is already looking forward to September. :)

-------------------------

*Four days in the afternoon class (12:00-2:30PM) with the same wonderful teacher.

Only 3 More Weeks!

2011-05-22T18:36:00.001-07:00

Only three more weeks until Sabrina & Steven's wedding, when Bertrand will make his official ring bearer debut!

Bertrand got fitted for his tuxedo today. If B is any indication, all men in the bridal party will look great!

Medication Changes

2011-05-17T19:48:00.000-07:00

Bertrand had an appointment with his neurologist today. We updated her on everything including the changes in Bertrand, both positive (mood, interactivity) and negative ("weird looping seizures"). The neurologist is pleased with his progress and believes that Bertrand's new seizure type is actually a kind of partial seizure, since he retains some consciousness and it affects him asymmetrically.

Bertrand's blood draw from last week had his depakote *just* in effective range and his lamictal high in the effective range. We will be increasing his depakote to 250mg twice a day and lowering his lamictal (since depakote raises lamictal levels) to 25mg twice a day. Another blood draw will be taken next week and then in a month. If Bertrand's seizures have improved by then, we can begin a SLOW wean from keppra (800mg will take 8 months).

It is worth noting that Bertrand's liver enzymes have remained steady or have even fallen while on depakote and lamictal, both of which are metabolized in the liver. Depakote is known to be particularly harsh on the organ. Not resting on our laurels, we are upping Bertrand's carnitine supplement (Carnitor SF) to 4.5mL twice a day, which should continue to protect the liver. And, since depakote binds with vitamin D, Bertrand will be getting plenty of sunshine this summer along with his 1000IU vitamin D supplement. :)

If Bertrand's seizures do not improve on this current drug cocktail, we've already begun discussion on the addition of another drug: topamax. Topamax is known to work well on multifocal seizures, which are the kind Bertrand has. We know that there is an very small chance that a 4th antiepileptic drug will help, but of course we have to try. Bertrand has little to lose from another failure but so much to gain if we succeed! We will never give up.

PS - I am very proud to say that Bertrand was congratulated on his weight AND his weight-bearing!

Ensign Elementary Walkathon 2011

2011-05-13T14:12:00.000-07:00

Bertrand, Victoria, Nana (Diane) and I participated in the 5K Walkathon for Bertrand's school today! The day was beautiful and we all enjoyed the walk. The walkathon raised funds for teachers to buy classroom supplies, and promoted healthy, fun activities for kids. We already can't wait for Walkathon 2012!

PS - See if you can find Bertrand's name on the walkathon t-shirt--or, as he called it, the rollathon. ;)

Head Above Water

2011-05-10T15:16:00.000-07:00

The past three and a half weeks since Victoria was born have flown by! Learning to balance the needs of two children has felt akin to barely keeping my head above water. As we get a better handle on parenting two kids, I hope to get back to posting on the blog more. Until then, here are some pictures of Bertrand and Victoria snuggling together! It's amazing how much they already love each other. :)

**********

DANCE, DANCE, DANCE!

Bertrand is currently at the dress rehearsal for his dance recital on Saturday, May 14! If anyone is attending his dance performance on Saturday morning, please let me know! We'll be hosting a simple celebratory brunch at our house and hope you can join us. :)

Happy Mother's Day!

2011-05-08T15:55:00.001-07:00

Bertrand made this lovely mother's day gift at school!

Happy mother's day to all the wonderful moms out there from all of us!