Lab Results

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

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

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

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

Bertrand turns 4

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

Both kids are "feeding" themselves. :)

IEP Meeting 2011

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

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.

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

These images speak for themselves.

Happy 1st of December!

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

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

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?!

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

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

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!

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

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

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!

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!