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. :)