Can't catch a break

After the last several days of high HR, poor sleep, and not being as responsive to us Cydney has been moved out of rehab and back to the 6th floor. Just a step down from ICU.

There is a lot going on with her and many doctors working to find an answer and solution.

One thing we are concerned about, and probably the most concerned, is her shunt. The signs of shunt failure are headaches, nausea, vomiting, irritability, change in behavior or intellectual performance. Since Cydney is not able to talk to us we can only guess what is causing her the pain and discomfort. She has vomited, several times in the last week; she has been irritable when it comes to therapy or anyone wanting her to do something that forces her to work. After much pleading and short of demanding she is now ordered for an MRI to check and make sure all is working as it should.

She had a kidney ultrasound yesterday after a culture came back positive for a UTI. There were small calcifications found in the kidneys, the doctor did not want to call them stones. She is on antibiotics for the infection.

She has had two EEGs in the last 48 hours that have shown seizure activity, seizure meds are being adjusted. They seizures are subclinical, so we have no real outward sign they are going to happen or are happening. She stares off into space a lot and sometimes it takes a few seconds to get her to snap back and have a response to us.

She had an EKG done that showed no real concerning issues. She remains to have her heart rate in the 130-150 range. With it coming down to 120-130's while she sleeps. We are still looking to find the reason for the increased HR.

Her red blood cell counts are low, she received a transfusion this afternoon. With her counts low, she would not be able to move forward with the radiation treatments. With the transfusion she should be on track to continue tomorrow as planned.

Her poor body is fighting exhaustion, and with the schedule of rehab being very intense for her she can't get a break or time to rest. Her body is being put through too much and it is time to pull back on some things to give her the rest she needs.

Wednesday at 4pm she finally got her Chemo drug administered. After waiting for three days for an answer to when it would be given, frustrations were high. Communication has been almost non existent with oncology since the day they told us the plan and explained to us the cycle schedules. She was originally scheduled for Monday.  Talked with the oncology team and hopefully got our thoughts on the lack of communication across and we are now going to be more informed.

We have talked with her about the upcoming hair loss and trying to make it as light hearted a situation as we could. She handled it well, and we talked about some fun ways to wear scarves, hats or wigs when the time comes if she chooses to go that route.

I am very happy to see her smiles, when she is alert enough to smile for us. We still can get giggles from her, and that is the best sound ever!! She loves to laugh at mom and dad being silly and telling silly stories or jokes, she still responds to tickles. Her ability to control emotions is also affected. She will be happy smiling, laughing one minute and it will switch to crying so quickly. All we can do is comfort her and try to change the subject back to happy thoughts.

Cydney adores the nursing staff at Mayo, they dote over her from the minute she arrives to as she is being wheeled out the door. They love to watch her Cydney videos, seeing her talk and express who she is. It gives them a personal connection to her, as not just a sick child lying in bed coming in for radiation. They can see her sense of humor, he quick wit and her love of talking.

We all were laugh crying at some of them the other day, even Cydney! It is hard to see her in all this pain or frustration that she is having and not able to tell us exactly what is bothering her. We know our Cydney is in there and we have to be patient for her to heal.  The smiles and laughs make these hard moments easier to bear.

Prayers continue for her to keep fighting this battle and as we await test results from her MRI. Prayers as we continue to move forward in her treatment plan, as things are not going to be easier on her. Prayers for our strength as we support her through her battle.


Nathan and Lily continue to do well all things considering. Lily is learning so many new words and doing more toddler behaviors. She has the best "evil" look and she will shoot you that look if you tell her no. She loves Moana! Gives the best hugs and kisses to me anytime I ask for them. So sweet!

Nathan is doing well in school, his teacher called me today to say he is a very happy boy in class and shows his love of learning every day. I was very grateful to hear that and to get a phone call from her today. Puts my mind at ease. He was able to choose a toy out of the treasure box today and showed me what he picked out. He told me that he had chosen it for Cydney, because he already had one similar and wanted her to have it too because it would make her laugh. Before he went to sleep he was asking about her and how she was able to shower or brush teeth in the hospital. I was able to show him the videos and pictures we take on a daily basis of her activities. I think it helps him to see what she does and what her surroundings look like on a daily basis. He always comments on her smile and how she will be happy to see him.

Thank you, Thank You, Thank you all for the continued support. All messages and comments are read and received. We absolutely feel the love from everyone.

Waiting for transportation to Mayo Clinic

Soaking in the sun and warm air. Hospitals are so cold!!

New shoes and leg braces to help stabilize the ankle when she is able to stand and bear weight