We had a blast hanging out in Park City this year for Christmas.
Some of the highlights included,
• Hanging out with Ajji and Thatha
• Snowboarding in UT Powder
• The Living Planet Aquarium
• Temple Square
• Lots of new snow!
• Sledding
• Hanging out in Downtown Park City
• Shopping at Whole Foods
It was so nice to be away for the holidays, exploring a new area together without an agenda or list of things to do. Our time went by quickly but we came home feeling refreshed and relaxed.
Upon arriving in Park City, we embarked on making snowman with Keira.
Dad was in charge of the first big snowball.
Keira and Mom worked on the middle section, although we needed some help from Dad to get it on top of the base.
Keira gots a little distracted...
Adding details was the last step, however, Keira was ready for lunch and trying to eat the decorations. All in all, I think we did a great job... our snowman turned into a snowFAMILY!
We arrived in Park City to lots and lots of SNOW! As soon as the car was unpacked we went out into the backyard to play. Keira thought all the white stuff was pretty cool and had fun trying to catch snowflakes on her tongue
Lucky for us, the snow was wet and sticky, perfect for building a snowman.
We were all having so much fun that we decided to make a whole family.
We also thought it was time for little K to get her own sled so off to the store we went. She picked out the bright green one.
And we couldn't resist stopping on the way back home for an impromptu sled ride with Bear in tow. :)
Keira found a very interesting use for the step stool while we were trying to get packed Utah. We had to take a few minutes to get it on video.
The plan was to hit the road early in hopes that Keira would fall back asleep... unfortunately our little girl had a lot to say and spent the first few hours keeping us awake from her spot in the car.
We decided to stay the night in Elko, NV. We made great time considering the weather and thought it would be fun to order pizza and go swimming in the pool. Keira and Naveen figured out how to "surf" the luggage cart. Be sure to check out the video below too. :)
The pool ended up being a bust since they just cleaned it and it was FREEZING! We tried to make the best out of it by using our tub as a mini pool - K seemed OK with it.
We made it to Salt Lake City on Friday afternoon and stopped for lunch at the Red Iguana.
Then we did a little shopping/hanging out before heading to our final destination in Park City. BTW, the tree behind us was suppose to have 10,000 lights on it - Keira was obviously not in the mood for a picture.
We made it through Keira's 3rd Treatment - She is starting to be an old pro!
Our Clinic Visit on Monday was all good news. The doctors are VERY happy with her progress and how she has been responding to the medications. Although they did not change any of the dosages this month, they decided her weekly blood draws are not necessary at this point so less pokes for Keira, yay! We will still go one time per month about two weeks after her treatment to see how her immune system is responding to the medications. In addition, we are reducing her PT and OT sessions to just once a month.
It seems that our active little girl is meeting (and sometime exceeding) all the benchmarks for a 20-month old.
While we are overjoyed with this good news, we are still a little nervous about how she will respond if/when we continue to take away the medications but we are doing our best to stay present and trust that our doctors know best. :)
Keira's follow up MRI is scheduled for January 3, 2011. This is just part of the cancer follow-up to make sure that everything is as we expect. That will be a long morning since Keira cannot eat anything after midnight and her scan isn't until 1pm :( We are already working on getting the April MRI scheduled for first thing in the morning! These MRIs will be part of Keira's life so we are going to do our best to make it as easy on her as possible.
The day of treatment was long but Keira handled it well. We were not lucky enough to get a private room this time but had nice roommates. The IV was in with only 2 pokes (thank goodness!) Jamie came to LPCH for the day to help since Naveen had some meetings that he had to attend. It is important to have an extra set of hands now that she is mobile and does not like to sit still. We did our best to keep her entertained and in a good mood. Some friends brought us a yummy lunch and we got a surprise visit from a volunteer that is part of Stanford's Pet Therapy Program. There's nothing like a big cuddly dog to help pass the time.
Here are a couple of photos from our day -
Keira and Bear got matching hats
Aunt Jamie took the day off to help out at the hospital
Pet Therapy was a wonderful distraction for all of us!
Keira loves books but she is not very good at sitting still or using an inside voice quite yet. I thought that it would be a good learning experience to take her to storytime at our local library. She started out doing a great job and sat right in the front, however, this did not last long and she spent the majority of the time up out of her seat.
If you don't believe me, check out the videos below. :)
We had a wonderful time back in IL for Thanksgiving. Everyone was overjoyed to see Keira running around, playing and being her old silly self. The last time my family saw her in person she was being discharged from the hospital and was not able to walk, crawl, stand or even sit unsupported. This visit home was also a little mini vacation for me and Naveen as we had ample adults ready and willing to play with Keira. We were able to get out of the house and have some much needed adult time to just catch up with each other. You would think living in the same house we would have a chance to talk but honestly after a full day with Keira, I am usually too exhausted to carry on a normal conversation :)
The highlight of the trip for me was to see how well Keira gets along with her cousins. I always worry that the distance will prevent them from being close but I have to say that Keira absolutely adores Aiden (and she thinks Colten is pretty cool too). She was more than eager to mimic anything that Aiden does, which now includes climbing up on furniture as well as trying to jump off of it. (We came home with a few bruises - this little one is fearless!)
The trip home went by way too quickly, and once we were back in San Francisco it was appointment after appointment. We are still going to Physical Therapy and Occupational Therapy, but the doctor thought that a Speech Evaluation would be a good idea to get a baseline for what Keira's normal speech is at this point in time. If she has an OMS relaps it could affect her speech so this is just a precaution. Anyone that has spent any time with Keira in the past month of two knows that she is ALWAYS talking. We also met with a Behavioral Therapist so that we can proactively help Keira manage her frustration and impulsiveness. While we hope that her behavior is just that of a normal 20 month old we have to be realistic and remember that part of this syndrome is that it affects mood and behavior. Naveen and I met with the BT and she also observed Keira in a "play observation". We will go back in January to talk about strategies that might help all of us. Friday blood draws are also still happening. The good news is Keira is buddies with the phlebotomist and does not even whine when we have to poke her. If only she could be the one to do her IV for the next treatment!
As much as possible, we are trying to let Keira be a normal little girl. We are still super sensitive to germs and probably will be for years to come. Luckily, we have all stayed healthy and we are hoping to keep it that way. Keira has gone back to Emy's house for a couple of days and loves being back with her friends. We would really like for her to get back into her routine which would include me going back to work in January. We are going to hold off on making this official until after her MRI (cancer follow up - has it really been almost 3 months!) and her 4th IVIg and Cyclophosphamide treatment, which is scheduled for the second week in January.
Our new life is beginning to normalize and that feels good.
We met the Bahar Family for brunch and then took the girls over to visit Santa. The line was long and Keira was not easily entertained but it was all worth it to see the dazed look both the girls had when they actually met the jolly old fellow. No tears, but no smiles either. Actually, this years picture looks very much like last year.
We took Keira down to the Santa Cruz Mountains this year to cut down our own Christmas tree. She had a blast running around the farm trying to find the perfect tree.
Of course Keira insisted on helping her dad cut the tree down.
While we can't fit a very big tree in our condo, we think "Rawhide" is perfect. :)
The tree actually fit INSIDE our car for the drive back to San Francisco
Our evening was spent untangling lights and hanging ornaments. Fun for all of us!
Grandma and Grandpa thought it would be a good idea to have the grandkids help put up the Christmas tree this year. I think Keira's favorite part was dragging around the top of the Christmas tree by the end of the light cord :)
We also had a little present exchange between the cousins before we had to go back to San Francisco. Good times!
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