We're still trekking
In support of
Zoe Sue's Journey
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Zoe Sue's Journey
Hey everyone,
Miss Zoe Sue is getting bigger every day. Overall, she has been on a healthy streak. We are still hoping to discharge from hospice and move into palliative care, which means Zoe is healthy enough to not need urgent, weekly, check ups and support. This may change pending an upcoming EEG and we may be facing another period with hospice (more on that below).
We have successfully completed a 5-day intensive therapy at the brain center-APEX, here in Asheville. Just one week prior, we were able to get an MRI of Zoe's brain for her regular check up with Neurosurgery and it was both good and not so good to see. The good portion is that there was hardly any change from the MRI 3 months prior, so her brain swelling and fluid has not gotten any worse. The not so good news is that no change also means that her baseline still means very large brain ventricles and smaller amounts of tissue. We are not sure what Zoe's capabilities will ultimately be as far as development goes, but we are still going to fight to get this girl the best possible chance to live a happy life full of wiggles and joy.
The purpose of the brain center: At Apex she received daily treatment that included hyperbaric oxygen chamber therapy, low-level laser therapy and exercises to help develop her nervous system and help her brain heal.
-Hyperbaric Oxygen therapy: This is meant to help her body and cells take in as much pure oxygen as possible while allowing her body to absorb it at a molecular level. With pure oxygen, the brain stands a higher chance at recovery.
-Low-level laser therapy: By using different colors in medical grade lasers, the wavelengths from the lasers penetrate into the tissue and cells to encourage the different levels of Mitochondria to initiate repair. This is crucial for ensuring that every layer of healing can occur.
-Neuro exercises: After evaluating Zoe's reflexes, we've learned that she has an underactive nervous system. Many reflexes that babies grow out of have stuck with her. This is pretty typical for someone with brain damage like Zoe's. We were given strict exercise instructions that help her body tune in with her brain to work together for movement. Already, we have seen Zoe get better at grabbing toys and purposefully move her hands (especially putting things in her mouth), increase her head control and gain strength throughout her body.
Another discovery was that she may be impacted by what is called Cortical Visual Impairment (CVI). Zoe may have had a clean bill of health from the eye doctor, but CVI relates more to the neurological disconnect between her brain and her vision, once again a common compounded diagnosis from her HIE (lack of oxygen to the brain during her cardiac arrest). Things like not recognizing faces, not tracking moving objects and a look of confusion even while looking right at you. We are seeking vision services to add to our collection of therapies for Zoe to help her get as early intervention as we can to help her overcome a lot of these challenges.
While this was a great start, Zoe still needs your help!!!!
Please consider donating to help get more treatment. We will be heading to Charlotte for 3 weeks of body intensive therapies in September and still need your help to get a place to stay, food and gas. We will also most likely need to repeat this process 6 months after completion, which means big out of pocket expenses.
Miss Zoe Sue is getting bigger every day. Overall, she has been on a healthy streak. We are still hoping to discharge from hospice and move into palliative care, which means Zoe is healthy enough to not need urgent, weekly, check ups and support. This may change pending an upcoming EEG and we may be facing another period with hospice (more on that below).
We have successfully completed a 5-day intensive therapy at the brain center-APEX, here in Asheville. Just one week prior, we were able to get an MRI of Zoe's brain for her regular check up with Neurosurgery and it was both good and not so good to see. The good portion is that there was hardly any change from the MRI 3 months prior, so her brain swelling and fluid has not gotten any worse. The not so good news is that no change also means that her baseline still means very large brain ventricles and smaller amounts of tissue. We are not sure what Zoe's capabilities will ultimately be as far as development goes, but we are still going to fight to get this girl the best possible chance to live a happy life full of wiggles and joy.
The purpose of the brain center: At Apex she received daily treatment that included hyperbaric oxygen chamber therapy, low-level laser therapy and exercises to help develop her nervous system and help her brain heal.
-Hyperbaric Oxygen therapy: This is meant to help her body and cells take in as much pure oxygen as possible while allowing her body to absorb it at a molecular level. With pure oxygen, the brain stands a higher chance at recovery.
-Low-level laser therapy: By using different colors in medical grade lasers, the wavelengths from the lasers penetrate into the tissue and cells to encourage the different levels of Mitochondria to initiate repair. This is crucial for ensuring that every layer of healing can occur.
-Neuro exercises: After evaluating Zoe's reflexes, we've learned that she has an underactive nervous system. Many reflexes that babies grow out of have stuck with her. This is pretty typical for someone with brain damage like Zoe's. We were given strict exercise instructions that help her body tune in with her brain to work together for movement. Already, we have seen Zoe get better at grabbing toys and purposefully move her hands (especially putting things in her mouth), increase her head control and gain strength throughout her body.
Another discovery was that she may be impacted by what is called Cortical Visual Impairment (CVI). Zoe may have had a clean bill of health from the eye doctor, but CVI relates more to the neurological disconnect between her brain and her vision, once again a common compounded diagnosis from her HIE (lack of oxygen to the brain during her cardiac arrest). Things like not recognizing faces, not tracking moving objects and a look of confusion even while looking right at you. We are seeking vision services to add to our collection of therapies for Zoe to help her get as early intervention as we can to help her overcome a lot of these challenges.
While this was a great start, Zoe still needs your help!!!!
Please consider donating to help get more treatment. We will be heading to Charlotte for 3 weeks of body intensive therapies in September and still need your help to get a place to stay, food and gas. We will also most likely need to repeat this process 6 months after completion, which means big out of pocket expenses.
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