Naveen's Birthday Weekend

When we asked Naveen what he wanted to do to celebrate his birthday he said snow or surf...
with such gorgeous weather this past week, Santa Cruz seemed like the perfect choice!

We took Naveen out for Brunch after soccer and then hit the road.

Cart surfing at the hotel on the way down to the pool is always fun.

The girls enjoyed hanging out in the hot tub with the birthday boy.


For dinner we tried a new place called, Bantam.
It was amazing! The girls loved their pasta and our pizza was delicious.
 

When we first got to the restaurant Keira said, "I smell donuts"... we dismissed her observation and said it was probably just the pizza dough. When the dessert menu came the first option was homemade donuts!  Of course we had to get them and they were yummy.

 

Back at the hotel Naveen opened his cards and present from us.


I made his favorite vegan, chocolate chip cookies.


Sunday was spent at the beach all day.
Akemi took an interest in Naveen's surf board so he gave her a few pointers.

 It was a perfect end to a fun-filled weekend!

            

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Clinic

Two thumbs up for Keira. Dr. Effinger told us today at Clinic that she's done taking her daily medication. Yay! It's been almost 3 1/2 years since Keira first started taking steroids to help suppress her immune system.  In October, Keira took her last dose of Dexamethasone, which was a potent immunosuppressive steroid targeted at OMS. As odd as it may seem, the fact that she was on such potent steroids for such a long time meant that her body down-regulated it's own natural steroid production. As a result, she's also been on a supplemental steroid (hydrocortisone) as well. As we removed the Dexamethasone, we had to ensure that her body would start producing its own natural steroid at its normal levels. And today was the day that Dr. E felt comfortable letting Keira's body do its job!  

We are so proud of our little girl! 

So much of this OMS journey is over her head, but she just trusts that we know what is best for her. That's a lot of pressure on us as her parents but today we couldn't be happier to be taking this step forward. 

Talking about it with Naveen tonight, we realized that Keira's reaction was more subdued than you would think... for her it seems like going off her medication was a non-event. I guess it has just been a part of her daily routine for so long that it doesn't seem like such a big deal to her.

When I asked Keira what she'd like for dinner... anything she wanted... she requested chicken nuggets from Old McDonald. Not the healthiest option but easy enough to accommodate.  :)

Keira will need to go in for some blood work in about six weeks to check her steroid levels.  It will be important to see if her remaining adrenal gland has taken over the production of the steroids her body needs. Since she has to get a poke, the doctors will also check a few other things to get a baseline on how she's doing in general.  

Thank you for all the love, prayers and positive thoughts!  We know that they help!

Grandma and Papa's Visit

Grandma and Papa came out for a visit this month.  Here are a few pictures from their visit!

Making pizzas in their pjs was a hit!

Akemi loves the games on Grandma's iPad.

Playing games was fun.

Tea for two!

Check out this cool cupcake.

Happy St. Patrick's Day!

The girls often ask if they can get Lucky Charms when we're at the grocery store and I always tell them they have to wait until St. Patrick's Day. Keira reminded me this year. :) They both loved the marshmallow charms, however, as Naveen and I suspected no one wanted to eat the cereal part...

 

I did my best to make dinner fun... pesto pasta, broccoli and green water and milk!
Cheers!  May the luck of the Irish be with you all year long!

 

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