The fight goes on
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Zoe Sue's Journey
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Zoe Sue's Journey
It's February now, which means we are celebrating love and fighting to keep Zoe healthy during winter sicknesses and Measles outbreaks. We have had a lot of appointments recently, with some of the biggest being Neurosurgery to discuss how Zoe's brain is looking after having her VP shunt placed in early October. After 4 months and some change, Zoe's brain is showing that the ventricles are decreasing in size and her brain tissue is making a comeback.
Let's talk about Zoe's brain for a moment...
When Zoe had her first event-the 30 minute cardiac arrest-she suffered from severe brain damage. MRI showed that just about every layer and area of her brain was affected. We were told that over time, some brain tissue would die off and remaining tissue would basically "connect with neighboring tissues of the brain" to its own capacity (what was left). You cannot regrow brain tissue once it's dead. After the tissue died off, however, Zoe's cerebral spinal fluid built up due to some sort of blockage (believed to also be from the original event) preventing it from flowing from her ventricles to the rest of her body-which is what a normal brain and healthy ventricles do. By the time we caught it she needed emergent surgery to have her VP shunt placed. This shunt is programmable meaning that we only need to have neurosurgery put a magnet up to the back of her ear and turn the dial to increase or decrease the flow rate of fluid to her body.
Zoe and I (Beth) have been traveling to and from Charlotte and keeping a close eye on what's going on with her brain. It is recovering and they have adjusted her shunt twice now after one adjustment with the hospital stay from a UTI. Cranial ultrasounds and now, rapid MRI's, show that her ventricles are still very enlarged, however, her tissue is becoming more broad and clear. The fluid was only pushing the tissue to squish against her brain, causing her a lot of pain, discomfort and her other neurological issues. Zoe lost a lot of motor and developmental skills during that time. Now that she is recovering and the shunt is in place and working, she has begun to do things again and reach small but mighty milestones, like sucking on her thumb and using her hands to grab toys-she actually shook a rattle the other day! She is also more aware of her surroundings and is giggling and laughing at more and more people even if not tickled.
Needless to say, our milestones at 10 months old are very different from other, typical, children. We are waiting for the day that she pops her head up and leaves it there without getting tired or having us support it. We're unsure if she'll be able to walk, but she is doing the movements for crawling while in tummy time. We have an adaptive feeding chair so we can practice taking drops of breastmilk for feeding therapy, as she still doesn't eat anything by mouth yet. She has started to use her legs to kick more and her hands and arms are starting to come to midline a bit more as well. We are in physical, occupational, speech and feeding, and hearing therapies every week.
Our goal is still on track with a bit of variety here. We are raising funds for the brain center here in Asheville as well as they are well known to help individuals with traumatic brain injuries become their best selves in life. Through the use of therapies like Hyperbaric chambers, light therapies and other technologies (like vibration plates coupled with therapy), the nervous system is able to reconnect with the body and parts of the brain recover in unique ways. The brain center, Apex, has a great online following and I encourage everyone to take a look at their instagram or webpage to find more details about the treatment we are hoping to enroll Zoe into. Yet again, these treatments are not covered by insurance. Our sights are still set on intensive therapies previously mentioned later this year.
We humbly ask, yet again, to please share this platform with any and everybody who might be inclined to help Zoe and hear more about her amazing journey through this world. I truly believe with the right help and therapies she has a very special story to tell and can make a big impact in our world of showing just what someone who has been through a horrific event is capable of overcoming, despite all odds.
My aim is to bring awareness and support to other families down the line who may be facing medical hardship with their children. If I knew in the beginning what I know now (hindsight, right?), I have no doubt that we could have helped her reduce risks of initial and compounded trauma and damage to her brain. This baby wasn't expected to make it out of the operating room, and then wasn't expected to live past the initial 2 weeks after surviving, and then wasn't expected to live through extubation. She is showing us that she wants to live and be apart of this world and just how strong she really is, so we are asking that you help her find her strength for even the most simple tasks of holding her head up, walking, talking and eating.
Let's talk about Zoe's brain for a moment...
When Zoe had her first event-the 30 minute cardiac arrest-she suffered from severe brain damage. MRI showed that just about every layer and area of her brain was affected. We were told that over time, some brain tissue would die off and remaining tissue would basically "connect with neighboring tissues of the brain" to its own capacity (what was left). You cannot regrow brain tissue once it's dead. After the tissue died off, however, Zoe's cerebral spinal fluid built up due to some sort of blockage (believed to also be from the original event) preventing it from flowing from her ventricles to the rest of her body-which is what a normal brain and healthy ventricles do. By the time we caught it she needed emergent surgery to have her VP shunt placed. This shunt is programmable meaning that we only need to have neurosurgery put a magnet up to the back of her ear and turn the dial to increase or decrease the flow rate of fluid to her body.
Zoe and I (Beth) have been traveling to and from Charlotte and keeping a close eye on what's going on with her brain. It is recovering and they have adjusted her shunt twice now after one adjustment with the hospital stay from a UTI. Cranial ultrasounds and now, rapid MRI's, show that her ventricles are still very enlarged, however, her tissue is becoming more broad and clear. The fluid was only pushing the tissue to squish against her brain, causing her a lot of pain, discomfort and her other neurological issues. Zoe lost a lot of motor and developmental skills during that time. Now that she is recovering and the shunt is in place and working, she has begun to do things again and reach small but mighty milestones, like sucking on her thumb and using her hands to grab toys-she actually shook a rattle the other day! She is also more aware of her surroundings and is giggling and laughing at more and more people even if not tickled.
Needless to say, our milestones at 10 months old are very different from other, typical, children. We are waiting for the day that she pops her head up and leaves it there without getting tired or having us support it. We're unsure if she'll be able to walk, but she is doing the movements for crawling while in tummy time. We have an adaptive feeding chair so we can practice taking drops of breastmilk for feeding therapy, as she still doesn't eat anything by mouth yet. She has started to use her legs to kick more and her hands and arms are starting to come to midline a bit more as well. We are in physical, occupational, speech and feeding, and hearing therapies every week.
Our goal is still on track with a bit of variety here. We are raising funds for the brain center here in Asheville as well as they are well known to help individuals with traumatic brain injuries become their best selves in life. Through the use of therapies like Hyperbaric chambers, light therapies and other technologies (like vibration plates coupled with therapy), the nervous system is able to reconnect with the body and parts of the brain recover in unique ways. The brain center, Apex, has a great online following and I encourage everyone to take a look at their instagram or webpage to find more details about the treatment we are hoping to enroll Zoe into. Yet again, these treatments are not covered by insurance. Our sights are still set on intensive therapies previously mentioned later this year.
We humbly ask, yet again, to please share this platform with any and everybody who might be inclined to help Zoe and hear more about her amazing journey through this world. I truly believe with the right help and therapies she has a very special story to tell and can make a big impact in our world of showing just what someone who has been through a horrific event is capable of overcoming, despite all odds.
My aim is to bring awareness and support to other families down the line who may be facing medical hardship with their children. If I knew in the beginning what I know now (hindsight, right?), I have no doubt that we could have helped her reduce risks of initial and compounded trauma and damage to her brain. This baby wasn't expected to make it out of the operating room, and then wasn't expected to live past the initial 2 weeks after surviving, and then wasn't expected to live through extubation. She is showing us that she wants to live and be apart of this world and just how strong she really is, so we are asking that you help her find her strength for even the most simple tasks of holding her head up, walking, talking and eating.
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Rich Haschke