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Charay’s Story

Site created on September 1, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

If you’re on this site, you know and love Charay. Charay is a story that I don’t have enough time to write today. It would take months at a minimum to tell you about this young lady and her amazing strength, fortitude and purpose. While her life certainly hasn’t been easy, it has definitely been richly blessed. Likewise, she has been a blessing to others. Before you ask, I am not biased because mother’s can’t be biased. That’s my story and I am sticking to it.

I am here to share information regarding Charay and her recent health struggles. It will be easiest for me to share in this space as opposed to having to send a multitude of texts or numerous phone calls to keep everyone updated. I am hopeful that this will be a short lived site and that Charay’s treatment and recovery is a speedy process.

On Thursday, August 20th, Charay awakened in pain and wanted to lay in bed. This was totally unlike Charay who likes to get up and get her day started. I gave her some ibuprofen and went to work. Upon returning home, Charay’s nurse informed me that Charay had a stiff neck. Upon further examination, concerns about her shunt (previously uneventful for 22 years) was thought to be malfunctioning. A trip to the ER ended in emergency shunt replacement surgery early Friday morning. After a brief hospitalization, Charay appeared to be adjusting to this new shunt well and we were discharged home. The following Friday, I became concerned because she appeared to have a headache and had difficulty holding her head up to make eye contact. Another trip to the ER confirmed the start of another shunt failure.

The neurosurgery team at Children’s have worked very hard to uncover the reasons for this shunt failure. Charay has had every imaging and blood test you can imagine and is currently on 3 antibiotics. Testing of her cerebrospinal fluid has revealed a bacterial infection that is typically found in poop. No explanation given as to how this bacteria entered into her csf, but I have a few ideas.

I will do my best to update this story and keep in communication with everyone. Please be patient. I’m going to try to work as much as I can and also balance my role as mom and advocate for Charay. All prayers, positive vibes and energy accepted,

Newest Update

Journal entry by Carmen Carr-Williams — Sep 19, 2020

We are HOME! I cannot begin to express how thankful and grateful for all of the prayers and well wishes. The powerful prayers and positive healing energy sent to Charay has been received and God has answered.

Charay has a way to go to regain her strength and we will continue to closely monitor and treat her pain and also monitor this shunt to ensure proper function. We have a slew of follow up appointments but being seen as an outpatient is alright with us.

Charay loves being home but we are trying to help her understand that she needs assistance when navigating because she has some muscle weakness and balancing issues. The latest incisions from the surgery aren't the prettiest but are healing nicely. Please pray for continued healing. We are looking forward to getting some much needed rest.

Read More of the journal titled "But God..."

Dressed and ready to go home.

Charay's face when asked if she was happy to be leaving the hospital.

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