Go Packers!

Here's a little video of Keira after the Packer win against the Bears. You've got to love those chipmunk cheeks.

Update

Thanks again for all the love, support and prayers this week. We know that it helps us stay strong and keep a positive attitude.

We were able to see Dr. Twist this afternoon and based on our observations it appears that Keira's OMA has flared up. We can not know for sure if this is due to the fact that we started giving her steroids every other day or that she came down with a cold, but the decision is to put her back on the daily dosage and monitor her ataxia.

You may wonder why not "wait and see" if she gets better now that the cold is going away. Unfortunately, what we know about OMA is that once these bad antibodies are created they will not just go away without some intervention. We will need to do something to help find that balance in Keira's body again. Dr. Twist said to think of it as a teeter totter. We want just the right amount of medication to suppress the antibodies so that Keira is symptom free and able to function normally.

While this may not be the best news, Keira has been on the best possible trend for the protocol we are following. We truly are thankful for how well she has responded to the medications and how quickly she regained her motor and speech skills. Keira is considered developmentally appropriate in all areas for a child who is 21 months old.

When you take a step back and look at the situation objectively, she truly is a little rock star, as this is only the fourth month of treatment and was the second time we were able to reduced her steroids. Many children in the fourth month are still on a much heavier dosage of steroids and still working to overcome some of the set backs from OMA.

We will continue to do all we can to help make sure our little girl stays healthy and the only way to do that is to take it one day at a time.

Dance Party!

I wanted to share a couple of dancing videos of Keira, Aiden and Colten. The grandkids have certainly gotten A LOT of use out of Papa's Dancing Snowman. I think we even had to replace the batteries once this season.

Chicago

Keira and I had a wonderful visit while we were back for Colten's Birthday Bash! As usual, the time went by way too fast but it was worth the trip to see K have such a good time with everyone, especially her cousins. Now that Colten is mobile, he can certainly keep up with the other two.



Keira was also able to spend some time with both her Great-Grandmas,





her Uncle Andrew



And to top it all off... Keira got her first tattoo, courtesy of Uncle Brandon.






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First Cold

As many of you already know the medications Keira is on lower her immune system. We have been super cautious not to expose her to any germs and keep her as healthy as possible. We knew it was only a matter of time before she caught her first cold and unfortunately that day is here. :(

The main reason that we are so worried about this is that we do not know how her body will react. Normally when you get any type of infection, your immune system will increase it's production of antibodies, which include all the different types of antibodies that have been produced to fight previous viruses. This is why vaccines work, your body builds up an antibody memory of these viruses so when it sees them again, it can immediately respond to them. Well with OMS, the body may do the same thing, which is to produce the antibodies that cause the OMS, which have been so far suppressed by the drug treatment that Keira has been on.

Our little fighter seems in good spirits, however we are watching her very closely and have noticed that her left foot is turning in and she seems to be tripping a bit more. That, coupled with the runny nose and coughing fits have postponed my return to work at least for another day or two so that we can monitor her recovery and be in contact with her doctors.

We so appreciate all the love and support we continue to get, but an extra prayer or two this week would be very helpful!

Meeting Bugsy and Cooper!

Keira was super excited to finally meet Bugsy and Cooper. She actually met both dogs the summer after she was born but as you would expect, doesn't remember the experience. :)

Bugsy was a good boy and performed all his tricks for her.



I think she was most impressed with his ability to catch a dog biscuit in the air after it was balanced on his nose since she's still talking about it today.

Cooper was also a good boy and let Keira give him lots of love.



Someday we might have to get her a puppy of her own.




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Playdate with Stella

While we were back in Chicago, Keira and I spent an afternoon with the Figenholtz girls. We wanted to meet, Mara, the newest member of the family, and have some playtime with Stella. The girls hung out last December and had a blast. Stella is only a couple of months older than Keira and they have very similar interests.... Elmo, baby dolls, trains... the list could go on and on.



It was also a nice excuse for Jessica and I to catch up a little bit and of course for me to hold a cuddly little baby! These kiddos grow up way too fast.

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Colten's 1st Birthday

Keira and I flew back to Chicago to help Colten celebrate his first trip around the sun. His actual birthday was in December but being blessed with a birthday right before the holidays has its disadvantages, however, the advantage is that you usually get to continue the celebration into the next month. :)

Jessie outdid herself again with the fancy homemade cake.



I don't think I could even attempt to live up to her decorating ability so I don't even try. Maybe someday she can do one for Keira too. That is what a good aunt would do. :)

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Clinic and K's 4th Treatment

Clinic was all good news again this month. We are again reducing her steroids, which now means we will be giving it every other day and watching to see how her body responds. Keira was in a great mood during our visit and was quite the social butterfly telling all the doctors all about the snow family she built in Park City, as well as her latest sledding adventures. :)

Keira's 4th Treatment went as well as could be expected. We showed up at 8am, the Vascular Team came down promptly at 8:30am to assess the IV situation and put on the numbing patches. We were able to go down to the cafeteria and grab breakfast before they put in the IV, and they were able to get it in on the FIRST try. K was awesome... she watched the whole thing and didn't shed a single tear. We were all quite impressed.

It is still quite a long day but we did our best to make it fun.

We hung out at the train quite a bit,


ate fun snacks, watched movies


and even got Keira to take a short nap.


Surfing the IV Cart was probably the highlight of the day. Hard to believe that we didn't think of this activity before.



Glory also stopped by after work to hang out and Keira was very happy to see a new face. They practiced their ABC's and Glory introduced her to the Chicken Dance, a new favorite for our little one.

Keira was given two special beads for her necklace this month. She picked out a black and white bead (which she referred to as a soccer ball) because our nurse heard that last month we had such a long day. Keira also picked out a special bead to symbolize reaching 75 beads of courage on her necklace - we had to start our second necklace this month!



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Weekend in Tahoe

After so much fun playing in the snow while we were in UT, we thought we should take advantage of living only a few hours away from the Sierra Nevadas.

We loaded up the car early Saturday morning and hit the road. We have taken our Chariot jogging and cycling but this was the first time we have used it in the snow. It must be super comfortable because once strapped in Keira and Bear took a two-hour nap.


That evening we hung out at Northstar with K's buddy Ben.


We stayed overnight and found an impromptu place to sled on the way home.


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Bonus: XCountry Videos

K ready for more sledding


K and Naveen coming down the hill - wheeee!


K's reaction or maybe rather non-reaction to the ride.

Playdate with Abhi

Check out these cute pictures of Keira and Abhi. They play so well together - we're lucky to have such good friends so close to us!

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Also, check out this video of the two in action.

National OMS Day

While we are still new to the OMS family, we are happy to help increase awareness to this rare neurological disorder in any way that we can. Please consider signing this petition to make January 6th National OMS Day.

UNTIL THE WHOLE WORLD HEARS!

The Rhythm of Life Project wants to establish January 6th as National OMS Awareness Day! OMS is believed to be a neurological auto-immune response in which the bodies own immune system wages war on the patients brain. OMS is typically triggered by a presentation of Neuroblastoma or a virus. It affects only 1 in 10 million. It is vitally important for these kids to have early diagnosis and intervention to avoid long term treatments and brain damage. OMS is so rare that most doctors don't even know what it is, never mind how to treat it. We want to award one day out of a year for every person reachable to be reminded that these kids are fighting for their lives, while the world just rumbles on around them.
We chose January 6th as the day we'd like to make OMS Awareness Day in honor of Zoe Cadence (whom the Rhythm of Life Project is named after). She was diagnosed January 6, 2006 and continues to fight with no remission accomplished yet. It is her fighting spirit that keeps us focused on finding a cure and spreading awareness.
www.omsawareness.com

MRI

Part of Keira's cancer follow up is that she will have periodic MRI's to confirm that there has been no growth in the area where her tumor was resected. For the first few years this will happen every 3 months. We knew that no news was good news but thought that we should let everyone know that there was NOTHING to see. Dr. Effinger told me that she went down to radiology to see the MRI with her own eyes. :) Keira's next MRI will be in April.

On my way with all my friends


Hanging out at the hospital






Happy to be going back home!


Can you say MRI?

Happy 2011

We celebrated NYE at home this year and ended up having a lot of fun. Keira and I made cookies and party hats while Naveen made us a very fancy dinner. We celebrate the arrival of 2011 with the East Coast, ate cookies and ice cream and then put the little one to bed. 2010 was a year full of the unexpected for our family. We feel so blessed to have such supportive family and friends and home that this next year will bring our little girl good health.

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