19 December 2014

2014 in Review

2014! Wow what a year it has been... full of doctors appointments, testing, and stress...just pure craziness!

2014 in Review
1 Well-Baby Check-Up
1 Overnight Stay at Primary Children's Hospital
1 Power PORT Placement Surgery
1 Tear Duct Surgery
2 High Fever Emergency Room Visits
10 Rounds of Vincristine (chemotherapy #1)
8 Rounds of Carboplatine (chemotherapy #2)
20 Blood Draws
4 Sedated MRI's
1 Sedated Auditory Brain Response Test
10 Visual Evoked Response Tests
9 Oncology Appointments
12 Ophthalmology Appointments
2 Audiology Appointments
56 Days of LockDown
245 days closer to a healthy baby!!!

2014 has been a year full of stress and anxiety... but it has also been a year full of growth and understanding. During the worst time of our lives we've had the incredible opportunity to surround ourselves with some of the best people we could have ever had the pleasure of knowing. Complete strangers have supported us through all of the ups and downs... and our families, well they all are just simply amazing!!! 

Sometime bad things happen to good people. I am a firm believer that none of these trials happen as a punishment- they happen to teach us. To open our eyes to what is really happening around us! All too often we all forget how much love surrounds us. We get busy with the hustle and bustle of life and forget to just STOP and enjoy the little moments in life. This situation has forced us to face our insecurities and bad habits. It's forced us to evaluate our lives and prioritize what's important. This beautiful little girl is our life! She's is incredible fighter showing us strength we didn't think anyone, let alone a toddler could have. She's taught us how to be patient, loving, understanding, and most importantly grateful for every second we have together! 

Thank you for all of the love and support you've given to our family this year. We are so blessed to have such amazing family and friends surrounding us in our time of need. We will forever be grateful for the opportunities we've had to get to know you! You've enriched our lives more than you will ever know! 

Happy Holidays!!! 

The LadyBug Gang 

04 December 2014

Chemotherapy- Round 8

Round 8 is done!!! 4 more rounds to go! Man, it feels so surreal to say that... And a little scary too! This has become such a part of us- those amazing people at Primarys have become apart of us... It's almost scary to think about not seeing them every few days. It's like taking home a new baby... You're just not sure they should let you leave with her... Alone and without constant supervision! While at times it seems like we would never make it through this year it's crazy to think we're more than half way through!!! 

Today went really well---quick and semi-painless! Might have been the quickest appointment we have ever had with oncology! Not much has changed from last month so after a few quick checks from the oncology team Rylie was accessed, IV fluids started, chemo infused, 10 more minutes of IV fluids... Then it was time to get de-accessed and head home! 

Grandma Kim was able to sneak away from work for a few hours this morning and come up to see where we've been hanging out the last few months. Rylie was really excited to show Grandma "her" kitchen and color some pictures with her. 


It's pretty funny to see her little personality come out through this process- she defiantly knows what she wants and when she wants it. 😉 Our baby is growing up right before our eyes! 

Before heading home we stopped off to check out the Christmas Tree decorated for the families on the oncology ward. Rylie has really caught the Christmas spirit this year and LOVES seeing all the decorations! Her little face just lights up when she sees everything decorated! 

While this year has been incredibly difficult for our little family, walking these halls seeing all of the families that will be spending the holidays in the hospital instead of at home surrounded by loved ones reminds you of how precious each and every moment is. Getting to sit at home, snuggled up on the couch, drinking hot chocolate and watching Christmas movies is a luxury many people dream about. Cherish every second you get to spend with your families this holiday season and pray for those fighting to get home to theirs! 

Burpees 4 Rylie

Thank you to everyone that came out this morning to support our little LadyBug at the Burpees 4 Rylie event at CrossFit22! 

Such an amazing morning full of fun and inspirational people!!! 

Recap video of all the fun we had this morning up on the LadyBug Gang Facebook page! 

Ophthalmology... And A Few Christmas Trees

All done with the eye appointments for the day. No change from last month! The ophthalmology team is still a little concerned with the damage that the tumor has already done to the nerves in Rylie's left eye but we can fix that later with a surgery to straighten out her drifting eye if needed before she starts school. We will wait until we complete the entire treatment plan and make that call after we are all done in April and see where her sight ends up. 

She was such a big girl today. She's becoming a pro with all these doctors appointments... Today she even told the doctors she would sit on the chair all by herself! Hello Ms. Independant! 

She got lots of compliments of her pretty sweater... She made sure to remind them her shoes were pretty awesome too 😉

All in all Dr. Hoffman is really pleased with her progress! Looking back to where were were in April of this year none of us thought we would even have a chance at a good outcome so we will take any small amount of good news we are given... It means we are moving in the right direction and that's all we could have ever hoped for! 

To celebrate we headed out to tour this years Festival of Trees! Each year South Towne Expo Center holds an event where people donate their time and materials to decorate hundreds of Christmas Trees, Wreaths, and Gingerbread Houses... After everything is all set up the public is welcomed in to bid on the trees, look around, and shop! EVERY SINGLE DOLLAR is then donated to Prinary Childrens Hospital! Helping to provide medical treatment to kids just like Rylie. It's become a fun family tradition of ours each year but this year it took on extra special meaning. Primary's has become our second home and any time we can give a little back to them we jump at the opportunity... Plus who can turn down the chance to look at all those amazing trees! 

It was such a fun afternoon! Rylie loved all the goodies, face painting, and cute lil' dancers... She could have stayed there all day if I would have let her! If your in Salt Lake City next year around this time you have to stop over for a visit- Best way to kick off the holiday season!