Tuesday, January 22, 2019

We have been busy...

The month of December was busy, fun and went by incredibly fast. With more progress from Cydney, school events, holiday celebrations and a much needed trip home to Tulsa the end of the year ended on many positive notes.
















There have been some big steps forward in Cydney's recovery. She is getting much stronger and having more energy each day. Her appetite has been increasing, with the episodes of nausea vomiting decreasing. She continues to be on anti nausea medications twice a day, down from 4 to 6 depending on the severity of her nausea that day. Her days at school have been extended an hour, and she is doing well with and enjoying the extra time. She really enjoys the social aspect of being able to be with her friends and eat lunch in the cafeteria. Next month she will be able to join the class on a couple field trips.



One day Cydney decided she wanted to use her walker to get herself in the car when it was time to leave for her therapy appointment.  I gave her the walker and stood back to let her try on her own. This was the first time she had attempted doing this, normally we would be holding her up while she walked or carried her to and from the car. I stood close enough to catch her if she were to loose control, but she did not need any assistance. She even navigated the step down on her own with ease. When we returned home she again said she could do it alone, so I decided to video her to show our friends, family and Cydney supporters just how far she is coming along. All through her recovery she had been the lead in what new steps or progress she makes. Once her mind is set she is not turning back. She has since used the walker predominately. When going to a store, walking around the house on her own, going to school and therapy. She says she is ready to be done with the wheelchair. It is still used for days when there will be a lot of walking.  





A few weeks ago, Cydney became upset that you could see her leg braces when she was wearing dresses or skirts, and does not like the limited shoe selection that fits over them. While out shopping we looked for a way cover the braces and still "be pretty" as Cydney explained. We found the leg warmers in the girls section and this solution immediately made her happy and accepting of wearing the braces. She has always liked wearing them, as they give her the ability to stand on her own and take steps unassisted. We still don't have a great solution for the shoes, but having the pretty leg warmers seems to please her for now. 

We found a new dentist here and took the kids to their first visit there. Lily was not a fan at all, Nathan was slightly nervous and Cydney did very well.




We were contacted by Children's Miracle Network at the beginning of December to come share her story during their Radio-thon at the Tucson Medical Center. While it was slightly nerve wracking to be interviewed on the radio, we go through it and were happy to share he story with others.




Nathan has continued to do well in school and karate. He tested up in belt color and is now a yellow belt. He attends 3 to 4 days a week, working on his skills.








Lily is a bundle of energy always on the go, into everything Disney Princesses, and learning so much.



Just before leaving for the Christmas Break the school had a Jingle bell Run and Sing a long program.




 We took a trip home to Oklahoma! Our much anticipated trip home to Tulsa was all it was expected to be and more. We stayed busy seeing family and friends. Celebrating the holidays and enjoying some much needed family time away from our daily routine of therapy appointments, doctor visits and school.  Seeing family we had not seen in a couple years, our first big trip since Cydney's diagnosis and getting back to Tulsa renewed my spirits.





                             

Warm Welcome Home at the Airport: we were surprised to see a group of people waiting for us to arrive at 1130 at night.



 Enjoying S'mores:





We were treated to a private screening for Mary Poppins Returns for the Funk Family. 

Almost 60 strong! Thank you Funk Family for joining us for the movie. Missed those who were not able to make it that day. It was great to see you all!


 A Visit to Gathering Place: Making a visit to the newest park in Tulsa was at the top of our list of things to do. This new park is over 66 acres for the first phase. There is a sensory garden, a variety of slides and swings, climbing structures, sand boxes, playhouses, bridges to walk across and towers to climb, and much more.  There is so much to do and see we could not see it all in one or even two days. 
 






























We attended Christmas Eve Mass and Church of the Madalene. Cydney was excited to be in the Children's Program.


Christmas Day was spent with the family:



 Fun with new gifts:


There was a Thank You Party for Aunt Janet and Uncle Bill, showing them our appreciation for all they do for the family. Taylor Swift made an appearance, along with several other celebrities.


The much anticipated and talked about Girls Night Sleepover too place at Aunt Janet's. A night filled with fun games, good snacks, movies and lots of girl talk.







Took the kids bowling followed by a visit to Braums for lunch and Ice Cream:










Celebrating New Years: New Years was low key spent the night at home watching Taylor Swift Reputation World Tour on Netflix.



Back in October, Cydney received a autographed picture from OSU Football player Dillon Stoner. He then contacted me to arrange a meeting with Cydney following the Bowl Game before we returned to Tucson. Cydney said it was "very cool" to meet a football player. Thank you Dillon for taking the time to meet with Cydney!







Saying "see you later" is the hardest part of coming home. We know it has to end at some point so we can return to Tucson and continue with our daily life there. Back to busy days for therapy, school and doctor visits.










January was set to be busy as well..

We returned back home to Tuscon and prepared for the next MRI for Cydney. This would be her three months post treatment scan. As usual scans bring some anxiousness and the ever creeping thoughts of what if. We all drove up to Phoenix on Sunday afternoon to be close to the hospital for a 530 am check in. After the scan was completed Cydney and Jared returned to the hotel for naps before we returned to Phoenix Children's for a meeting with Dr. Wetmore, where we would receive scan results and to meet her for the first time. Dr. Wetmore is now our primary oncologist, as the one in Tucson left Banner. Dr. Wetmore has followed Cydney's case from the beginning, this was just our first face to face meeting with her. Scans were clear and we are now in the process of getting her Port Removal scheduled. As long as the port is in, she will have to go into the clinic to have it flushed to prevent infection. Getting it removed as soon as possible is our goal. The main question is will the surgeon in Tuscon be comfortable removing it, due to it being placed by the surgeon at Phoenix Children's.

The girls received a pair for sparkly ballet slippers from Tippi Toes . A company started by two sisters I attended High School with at Bishop Kelley in Tulsa. Thank you Megan Reilly for contacting me to set this up, the girls will love dancing around in them.





We are back to our daily routine. Cydney will be starting up Therapeutic riding again, PT/OT twice a week at TMC and hopefully beginning Speech Therapy as well. She remains to get all therapies in her three days at school as well. 

Cydney was asked to be in the new promotional video for Banner UMC/Diamond Children's. We went after school one afternoon to attend the video shoot. 

 The New Year is off to a great start! We look forward to what 2019 will bring.


Many thanks to all the supporters! Your prayers, thoughtful messages, and cards are much appreciated!