Clinic Visit

Yesterday we had our Clinic Visit with Dr. Effinger and Dr. Twist. We are coming up on the one year anniversary of Keira's diagnosis so we knew this was going to be an important appointment full of information, changes and medication decisions.

Although Naveen and I always have mixed emotions about going back to LPCH, Keira thinks of it as her second home. She loves running into staff that she knows and has a great time playing in all the different areas while we wait. It's nice for us to see she hasn't been negatively affected by her stay at the hospital during her initial diagnosis. LPCH is a happy place for her. :)

Dr. Effinger and Dr. Twist were thrilled to see how well Keira is doing - so active and talking non-stop the whole visit. We are scheduled for her last IVIg infusion on September 19th. Since we are at the one year mark Keira will also have a LP (Lumbar Puncture) to get some spinal fluid. This was something that was done before she began any treatment and is part of the protocol. They will obviously have to put her under for the procedure and since we will be doing the IVIg after they can put her IV in while she is out (which will be nice since last time the IV process upset her more than normal). One less poke that she will be aware of is always a good thing. Also, as part of the follow-up, she will have another brain MRI, which will be combined with her already scheduled abdomen MRI in October.

The bigger part of our discussion was around weaning of the prednisone. Keira has done remarkably well since we were able to get her onto an every other day dose in May. We have seen such positive results with weight loss and vertical growth (even if it's just a few centimeters!) We do know that long-term use of steroids causes loss of bone density and in some cases hip issues or osteopenia, but weaning too fast could mean an OMS flare up, which would mean heavy steroids again until we stabilize her immune system. Such a balancing act!

What seems to work the best is weaning medication very slowly. Our biggest question was how slow is slow enough? After much discussion we all felt comfortable with taking her from 6mg every other day to 5mg for the next 2-4 weeks. We will check in after 2 weeks to see how she is doing. This means that now Keira will get 1.66ml of prednisone in the morning and her normal 2ml dose in the evenings, followed by a day with no steroids.

It is important as ever for us to keep her healthy and germ free. We don't want to add any other variables into the equation right now, so we will do what we can to make the right choices for her, balancing her need for a normal life with what we think is best for her health. It's not always easy and we have missed out on some fun trips, birthday parties, etc but when you take a step back and look at the big picture we are SO BLESSED!

Thank you for your continued love, prayers and support.

crystal + naveen + 2

We're wearing PINK tonight to celebrate the news of Keira's little sister!

Day at the Beach

Keira just loves going to the beach. She spent all Saturday carrying around her pail and shovel, asking if we could go to the beach. Even though we had a million other things to do, how could we resist a cute two year old who just wants to go play?! Well we couldn't. :)

We drove over to Bolinas and just hung out on the beach for a few hours. Keira had a blast building (and destroying) sandcastles, we collected a pail full of rocks, and she even found a tennis ball to play soccer with! Of course she did not want to leave but she did say it was, "a good fun day."

My camera is on its way out but we did manage to get it to take a few pictures. :)

"Look, I found a ball!"


"We can play soccer"


"I can stop it like Maya"


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Mammoth Mountain!

It's the last week of summer break for Crystal and Keira and we decided the best way to cap things off would be taking a trip to the mountains. We were hoping to spend time with the Benchwicks and Iyers in Breckenridge Colorado, but our plans changed last minute and we decided to head up to Mammoth Mountain on the Eastern Seirras right here in California.

Keira was really excited about all the bears she saw

Who was more stoked to be going on a hike?

Mom + 1 also getting in on the hiking action

Mom and Keira having a quick picnic on our hike

We realized that there weren't many sleeping options in Keira's new backpack.

We had to stop and get a "pie in the sky" pie at the trailhead, although Keira opted for vanilla ice cream.

Naturally we had to spend some time taking in the rays at the hotel pool, although Keira seemed to like playing on the rails more than getting wet.

We also met a Woolly Mammoth

On the way home we let Keira go for her own hike in Tuolumne Meadows in Yosemite, which was a perfect place to let her explore all the finer points of the outdoors, like tree walking...

Throwing stuff in streams...

Toddling around and exploring...

And playing in dirt while Mom takes a snooze...

As Keira would say "we had a good fun time" in the mountains!

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