1 week post Dex

I just wanted to give a quick update on Keira.  Although the three days she was on the dex pulse were hard, Keira is already noticeably better.  We were concerned that she was looking worse toward the end of last week.  She was super unstable, falling A LOT and her hands were very shaky, not to mention her irritability.  When you stop and think about all that is going on in her little body it's amazing she handles things as well as she does.  We're so proud of her spirit and willingness to keep moving forward.  The most she ever asks for is some extra chocolate milk.  :)  

Keira is suppose to go see her Physical Therapist tomorrow so it will be interesting to hear what Jackie thinks.  I feel like Keira is just about back to normal with her gross motor skills.  I can still notice a slight shakiness in her hands, but it is way better than before and I'm sure most people would not even notice it at all.  The other crazy thing is that her speech seems so clear and articulate.  I think the people at the Articulation Boot Camp think we're silly for sending her, but this is all good information to have documented.  Maybe her speech will be an earlier indicator for an OMS flare and we won't have to let things progress into hand tremors and more severe ataxia.

Keira has also been such a great helper at home with Akemi while Naveen is out of town this week.  She's cooperative, happy and has lots of energy.

We will continue to keep everyone updated on how she is doing... thanks for all the happy thoughts!

5 Green Speckled Frogs

Too cute not to share! Keira was excited that she got to sing "5 Green Speckled Frogs" at her speech class today. She was a bit more articulate in the car on the way home... believe it or not I think she was nervous in front of the camera! :)

 

Keira's Morning Salute

Here are the words, just in case you're not sure what she's saying  :)

I pledge Allegiance to the flag of the United States of America and to the Republic for which it stands, one nation under God, indivisible, with Liberty and Justice for all.I pledge of Allegiance to the flag ofthe United States of America and to the Republicfor which it stands, one nation under God,indivisible, with liberty and Justice for all.

God Bless America, Land that I love. Stand beside her, and guide her Thru the night with a light from above. From the mountains, to the prairies, To the oceans, white with foam God bless America, My home sweet home.

Articulation Boot Camp

Keira started Articulation Boot Camp today and loved it!

LPCH is offering this program on Monday/Wednesday/Friday for 3 weeks.  In a small group the speech pathologists work on auditory bombardment and speech sound practice, as well as generalization of sounds and specific words practiced in gross and fine motor activities.

Those of you that see Keira on a regular basis know that she is quite expressive and has an extensive vocabulary.... basically she talks A LOT!  Articulation is a completely separate category and something that we need to monitor with Keira's OMS.

Keira's articulation is not as precise as it should be and it could just be that she's talking too fast or not paying attention to the sounds in words but the curious part of all this is that since her dex pulse she is speaking very, very clearly.  We're wondering if it is a coincidence or if the steroid pulse actually did something to help her speech.

It will be hard to ever know for sure so we will continue to monitor her and make the best choices we can given our circumstances.

Ready or not.... it's time for dex

OMS is an autoimmune disease that is full of shades of gray... it's so hard to know if something is is going on with Keira.  The one thing that is absolute is when we see a hand tremor.  Keira went to see OT on Monday and unfortunately, Eiri was able to confirm what we have been worried about.  Keira's arms/shoulders are ataxic and she has a slight hand tremor.  Even with her OMS symptoms coming back she is in the 65% for her age range and Eiri was impressed with the amount of growth Keira has shown since she last saw her in December.   That's our girl.  :)

Now that we've "hit the wall" so to say with the prednisone wean twice it is time to change our course of action.  We knew that it was a very real possibility that we would have to switch from prednisone to dexamethasone but it doesn't make it any easier.  Dex is 6.6x's stronger than prednisone and is quickly becoming the steroid of choice when treating OMS, especially in Europe.  It is believed to better penetrate the blood brain barrier (BBB) and penetrate the cerebral spinal fluid (CSF).

Dex is given in a pulse dose in a 28 day cycle.  Keira will receive 12mg of dex on day 1, 2, and 3.  This high dose of steroids is meant to "shock" the immune system and suppress the OMS antibodies.  We are also hoping that once Keira is stable and her symptoms have disappeared we will be able to finally get her off the prednisone.  Unfortunately we can't just stop the prednisone cold turkey.  We are actually going back up on the prednisone to the dosing we know she has been the most stable at - 6mg every other day.  

As with any steroid dex has its nasty side effects and the one that will be most obvious is behavior.  If you've ever been on steroids you have an idea of what poor little Keira is going to be going through.  Everything is more intense and little things seem like big things.  A typical 3 year old already has a lot of emotions and control issues to deal with... and with such a high steroid dose, we are all going to need daily reminders to be calm and patient.  :)

When I talked to Keira about her new medicine she was very grown up about it.  We talked about how it was going to be bitter but it was important that she just swallow it quickly.  She asked if she could drink chocolate milk right after to take the bad taste away.  We also thought it would be a little more fun if we put some sprinkles on top.  So... the little blue dex pill is crushed, put into vanilla yogurt with sprinkles on top.  Keira took both doses today without a problem.

Fingers crossed she keeps it up!

I attempted to sing, "A spoonful of sugar helps the medicine go down..." and K looked at me like I was nuts.  Guess we will have to find a time to show her Mary Poppins.  :)

Ortega Park

Alexis is so friendly!

 

 Akemi hanging out with Jamie and Maya

 Fun in the water

 

 Alexis and Stacey

 

 Is it time for ice cream yet?

Henry Cowell State Park

It's been lots of fun discovering new places for family hikes now that we live in Cupertino.  It's hard to believe that we have never been to Henry Cowell State Park in Felton, CA.
What a great discovery.  We will definitely be back.


Here's a picture of K... ready to go!
 

 Dad and Keira, setting the pace
 

 Mom with a sleeping Akemi

 Happy Trails!

 

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mystery fever

Keira woke up last night super agitated and upset.  Her body was rigid and she was kicking the side of her bed so much so that she hurt her ankle.  Also concerning was that Keira told me, "Something is wrong with my eyes, I can't see you very well" :(  That is a red flag that something is going on with her eyes and a possible sign of an OMS flare.

Once I was able to calm her down it was apparent that Keira was running a low grade fever.  It's never good for kids with OMS to be sick and in the midst of trying to wean her off prednisone the anxiety increases.  After we were able to convince her to take some Tylenol (she kept insisting that she only likes her "regular medicine" - which most people would protest) she was able to fall back asleep.

Keira woke up a few times during the night but for the most part was able to rest comfortably.  We did notice that while she was sleeping her body was very "twitchy" which again might be a calling card for OMS.  

We called LPCH this morning and they thought it would be best if we went to PAMF to get some things checked out.  We're pretty familiar with the routine... urine sample, blood draw for CBC and possible swabs for throat and ears.  

Basically, the doctors are looking to rule out a bacterial infection.  We also have to be careful that Keira does not develop an adrenal insufficiency.  Since she has been on steroids for such a long time, her body does not always make the "stress steroids" it might need to handle an infection.  

All the labs came back clear so at this point we think that Keira is just dealing with a viral infection.  No idea where she got it, but we are hoping that it is short lived.  

Unfortunately, there is little we can do about the other OMS symptoms except wait for a few days to see if it stays the same, gets worse or gets better... such a hard thing for a parent to do.  

We, of course, are hoping that it gets better since we are ready to continue weaning her off the prednisone.  Positive thoughts and prayers for our peanut.   :)

Party in the USA

Keira and Soraya kept everyone entertained as we waited for the Caltrain.
This is a little dance they learned at school this spring. Too cute!

Caltrain to Peers Park

Glory had the great idea to take the kiddos on the train for a little outing to the park.
Keira and Soraya were so excited about the idea of riding on the train together.

 

 We borded Caltrain in Sunnyvale and went a few stops up to Palo Alto.
 The ride was short but still very fun for our two silly three-year olds.

I think Akemi had fun on her first train ride too!


 The girls had a great time playing together at the park,





 and Akemi and Cyrus enjoyed rolling around on the blanket!

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Big Basin Family Hike

It's great that Big Basin is just an hour away from our new house. We thought it would be good for the family to take advantage of the nice day and get outdoors. We hugged some trees

 and practiced our balance


Did some climbing (some of us are braver than others - Akemi and I were happy to take this picture!)  


 The Redwood Loop was perfect for letting Keira get out all her energy, then we had lunch and went for a 2.5 hour hike while the kiddos slept (well they slept for a little while). 




 The reward at the end of the day was ice cream and, of course, Keira chose blue!  


Good times!


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