4 Months gone by!

It has been 4 months since we first noticed signs something was off with Cydney. What started with neck pain quickly developed into more concerning symptoms as she began to walk with an unbalanced and staggered motion to being unable to balance herself.

June 19- At doctors office for Nathan and Lily's well checks. Also asked about Cydney's complaint of neck pain for several days and her changed in gait.

June 21- Went in for blood work to rule out infections or other unseen issues.

June 26- Going in for X-Rays to check alignment and possible scoliosis. 

June 27- Taking a video of Cydney to show her difficulty with walking as well as not being able to move head or neck around.

June 29 8am- Went into see pediatric orthopedist, to get his opinion on her X-rays.

June 29 6pm- Being admitted to Tucson Medical Center to receive an MRI in the morning.

June 30- Went in for an MRI at 8am. We waited until close to 11am for her to be done and to see her again in the recovery area.

 Close to 1pm, back in her hospital room awaiting the results of the MRI.

June 30 1:15pm- ER doctor, our pediatrician and a hospital case manager were waiting for us in a conference room across the hall. We were then told about the 5 cm tumor at the base of Cydney's brain. Decisions had to be made on her immediate care, we opted to be transferred to Phoenix Children's Hospital as soon as possible. Soon after phone calls to family and friends began as we quickly began planning for the next steps in Cydney's care. By 4:30pm Cyndey and I were being loaded into a helicopter and on our way to Phoenix.

July 1 8am- Cydney is taken back for a pre op MRI and surgery would immediately follow. After the longest and very stressful 13 hours, Cydney was brought back to PICU from surgery and we were able to see her again.

Morning of Surgery- July 1, 2017

Night after surgery- July 1, 2107 9:30pm

These past 4 months have been stressful and emotional. We have seen an incredible amount of fight in Cydney and her determination is unwavering. We did not know how she would wake up from the surgery. We were told by our neurosurgeon about the possibility of Cydney not being able to talk right away and could be mute for a few weeks or months. We were told motor function could be slow at first but should come back with Physical Therapy. The extent of her loss of function was a surprise to many. For weeks doctors were unsure how to proceed or what to expect in her recovery. Posterior Fossa Syndrome effects each child differently and the rate at which they come back is on a large spectrum. Some recover quickly within a few weeks others it can take years. The range of improvement also varies significantly.

Going thorough the therapies has been a lot of work for her. There have been many days she was in pain or tired and did not want to do the work. She always found strength to do some work each session, getting stronger and stronger by the day.

Day one of Therapy:
July 11, 2017

First time in wheelchair and out of PICU room- July 11, 2017

First time on Tilt Table- July 18, 2017

First attempt at coloring during Physical Therapy- July 25, 2017

Getting fitted for hand braces- July 27, 2017

Getting an EEG after Seizure-July 30, 2017

Working through Occupational Therapy and Physical Therapy- August 2, 2017

Fitted for braces to help support legs as she stands.

Third EEG-August 20, 2017

August 28, 2017 Therapy Session

Speech Therapy- September 1, 2017

There have been set backs and days where after radiation she was too tired to really participate in much therapy. The last month she has show tremendous progress not only in her physical endurance, but her speech is coming back and movements are becoming more coordinated. 

Saying 'Mommy'- October 10, 2017

Sibling Therapy is the best kind of therapy!!

First walk in gait trainer- September 14, 2017

Final Radiation Treatment- September 18, 2017

First day on bike- September 29, 2017

Physical Therapy- October 25, 2017

Painting during Therapy Session-October 27, 2017

The joys of being home, include being able to all be together under one roof doing normal family activites and enjoying quality time. Sitting outside by the pool, having the ability to easily wheel Cydney down to the Ramada to join us as we cook out and watch football games or listen to music is a favorite of hers.

Taking a nap on the couch while the younger siblings play and make ruckus. 

Night out at the Halloween Howl!

We were able to have her Chemo treatments transferred down to Tucson. She will be seen at Banner University Medical Center. Having the chemotherapy done in Tucson will help in being able to care for her as well as Nathan and Lily. Her first treatment is November 1st.  The next phase in her battle will be a rough one. Being the fighter she is, I am sure she will face this phase just as she has everything else. With a positive attitude and sheer determination.