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. 

It is good to be home!

The first week home from the hospital has been hectic and exhausting. 

Care for Cyndey is around the clock. With feeds every two hours, diaper changes, administering medications on time and being aware of when she is about to get sick and having the bucket and suction ready.  Keeping her entertained with books, movies, games, toys or going outside helps keep her from getting bored.  Nathan and Lily also do their best to entertain her with their silly antics. 

The days are filled with 2-3 hours of therapy sessions, daily errands or doctors appointments.  The days seem to go by so fast, by the end of the day everyone is worn out. 

Soaking up the warm sun! It feels good to be home.

Checking out her bedroom

Watcing football and enjoying being outside.

Friday we had dealt with more throwing up than we had on a while. Thinking she was having reaction to her flu shot we kept a close eye on her.  Saturday morning, Cyndey woke up with a 99.5 temperature and acting pretty lethargic. Per her discharge papers we were to take her on for a fever of 100.4.  Saturday around 3pm the fever reached 100.5. Off to the ER we went. 

We were at Tucson Medical Center from 4pm to 1am before being transported to Phoenix. Along with a urine culture and blood work done the doctor felt an MRI would be beneficial to ensure shunt was working properly.  She saw what she called a herniation on the right side and felt Cydney would be better if seen by more specialized doctors.  Her scans were sent to a neurosurgeon at Phoenix Children's who agreed Cydney would be best served with a pediatric neurosurgeon.  We then sat and waited for ambulance transport to be available.  

Once to Phoenix we sat in the ER for  another several hours while doctors came in to examine her. 

A neurosurgeon came in to reset the shunt, something that has to be done after any MRI is done. He set the setting to 1.0, previous setting was .5, to slow down the amount of fluid being drained.  He felt there was too much drainage. 

All day Sunday she was very alert, her eyes were open wide and symmetric. She was responsive to our questions and commands. She was kept on an antibiotic and fluids as she was having trouble keeping her feeds down and she remained to have a low grade fever.   

Monday morning the doctors confirmed A UTI. Her Neurosurgeon came by to discuss the scans and did not see anything of concern. We told them We wanted to go home, seeing as the scans looked good and we had antibiotics for her.  Knowing we would be back Thursday for post radiation scans and pre chemo testing, having her back home for a couple days would be nice.  All doctors agreed and discharge paperwork was started.  After a kidney ultrasound as a follow up to one she had a month ago, and one more IV dose of her antibiotic we were discharged and on the road home by 430pm.  

Being home all together is great! Back to a busy schedule of daily therapies, doctors appointments, and tending to her daily needs.  

When Cydney clealry asks for a Hatchimal, she gets at Hatchimal 😃. 

Working during Occupational Therapy

Happy Girl! 

Thank you all for the messages and texts of concern as we figured out what was going on with Cyndey. 

Welcome Home Cydney!!

The day we have been waiting for has arrived.  After 98 days in the hospital, we brought Cydney home!

As she left the rehabilitation unit, several of the therapists and nurses gathered in the hall to say goodbye and wish Cydney well.  It was an emotional send off. Thank you to all her therapsits, nurses and doctors who have taken such good care of her.

As we arrived home we were surprised to see the driveway decorated with balloons and banners.  The decorations continued into the house!

Ready to get a new routine established at home.