Tuesday, August 22, 2017

Acknowledging the small improvments

It is easy to get bogged down each day with the struggles and frustrations of not having our healthy Cydney back at home and having to see her endure all she has in the last 7 weeks. Knowing that she is missing out being in school with her friends, one of her favorite places to be; and being spilt up as a family. Living our lives in two separate cities, staying updated through phone calls and texts; not able to all be together is tough. We are adjusting though and making the best of the situation. We are grateful to have family who are able to come out to help either at home or up at the hospital.

Looking back to where we were 7 weeks ago, Cydney was sedated and on a ventilator. We were living exclusively in the hospital with two of our kids taken in by our amazing friends and still in disbelief of what had just transpired in the days past. So much unknown, so many questions to have answered.
2 days post suregery

Today we are able to get responses from her. From smile and laughing to crying. We use her emotions to communicate. While not always easy, it is a step forward.

The past week has been about making small improvements. Improvements in communication with the medical teams. Being her advocate to give her the best care we feel she deserves and needs. Being her voice. Jared has gone round and round with the doctors on how we would like to see things happen and what we feel is in her best interest. Met with resistance at times, it has not been easy to get his concerns heard clearly or to get an acceptable compromise or solution. We are making headway and on a forward moving track now hopefully with no more major road blocks.

Her MRI came back clear of any shunt malfunction. The shunt settings were adjusted and will have another MRI in a few days to see if there is any change in pressures or fluid levels in and around the brain.

She is on an anit- anxiety med, to hopefully calm her down and lessen some anxiety she appears to be having. Her seizure meds have also been adjusted and seem to be helping. Her latest EEG showed no seizures, Yay! She has started on her new formula Liquid Hope. The rate and volume remain to be a battle as we learn what her tolerance is before getting sick.

Radiation continues to knock her out and the exhaustion is more prevalent now as she takes longer to wake from sedation. This week is her third week of radiation.  Wednesday will be her final day of whole Brain and Spine radiation. The next 17 treatments will be focused on the tumor site. She has had two rounds of the drug Vincristine and 4 more to go in this phase or treatment.  Her hair has begun falling out. Coming out in handfuls as it is brushed or her head rubbed.

It is important to get her adequate rest on the weekends when she has days off of radiation. We attempt to keep them low key. This past weekend we took Nathan and Lily up to see her. Seeing them all together and smiling was fun to see. Nathan has become more comfortable around her and was eager to jump up on the bed and watch a movie with her, give her a hug and attempt to tell her a funny joke or two. Cydney was the happiest we had seen in a few days. She lit up when she saw both Nathan and Lily come into the room.

Fun with the siblings

Peaceful sleep

Ready for a walk outside

We are hopeful to have turned a corner and to be able to continue to see more improvements each day. Everyday things change and we see a new action, reflex or response to stimuli. Some things come for a day or two and then you won't see her do again. Like sticking out her tongue. Over the weekend she started doing so, sometimes on command and other times you would look over at her and the tongue would be sticking out. She also started to have a stronger grip on our hands or finger as we held her hand. Almost making a thumbs up sign in response to a command. She remains to get stronger in sitting and holding up her head and having trunk control.

The encouragement continues, as small improvements are made each day. I am amazed at her strength and will to fight through it all.

1 comment:

  1. So glad to hear baby steps. Sending my love and prayers 🙏🏻💕💕💕💜