It's a BIG month!!
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Zoe Sue's Journey
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Zoe Sue's Journey
April, Zoe's BIG month!
In just one week, on April 11th, we celebrate our girl's first birthday! Zoe loves to have books read to her and is also working on turning pages. She'll reach for fun characters with silly voices (per mom) and we can't wait to get her gussied up and celebrate her incredible first year of life.
We are still working through things with Zoe health wise. She had a tongue and lip tie correction done, so stretching now takes on more than just the rest of her body, but her mouth as well. Currently, she won't be indulging in a smash cake or first cupcake except maybe the tiniest dabble. While working with Speech therapy here in Asheville, Zoe needs to have her airway checked as she tends to have a squeaky wheeze and some vomiting after just drops of breastmilk. Teaching our baby how to swallow was never on my expected mom list, so now we need to see more specialists to ensure her safety as she attempts to swallow.
Aside from feeding concerns, we have been giving a low dose of antibiotics to ensure her UTI's stay at bay. We got a scan and have an appointment with a new specialist at the end of the month-Urology! On this topic we ask for lots of prayers and good vibes as we are hoping we have healthy kidneys and that this is not a larger problem. Simple infections, sicknesses and other "minor" complications for most children can impact Zoe's Hydrocephalus in a big way. Her shunt can function poorly and the fluid in her brain is at risk of swelling again if this happens.
On the good news front: We had a good MRI for Zoe's brain and see more tissue filling in where cerebral spinal fluid once occupied. Her ventricles are still very enlarged, but Neurosurgery has explained that she is expected to just have large ventricles from here on out. Overall the shunt is working well and Zoe's little brain is recovering. This shunt and condition will be lifelong for her and we will always have to keep an eye on its function. Zoe also received a good check up from the eye doctor who, like many, was very surprised with her ability to track, her eye contact and no apparent Cortical blindness (a common side effect of the area of her brain damage).
Zoe has also been on hospice since her release from the hospital with her shunt placement. We have had weekly visits from an amazing nurse through Hands of Hope based in South Carolina. This has been a tremendous comfort knowing that we have someone medically trained to look for warning signs and make sure Zoe is maintaining a stable baseline. Due to Zoe being a good health streak, we are looking at 8 more weeks until she graduates hospice and moves into Palliative care-a more "as needed" service.
Overall she's wiggly, smiley, adorable and becoming playful! Looking forward to stronger head and trunk control and a happy baby!
In just one week, on April 11th, we celebrate our girl's first birthday! Zoe loves to have books read to her and is also working on turning pages. She'll reach for fun characters with silly voices (per mom) and we can't wait to get her gussied up and celebrate her incredible first year of life.
We are still working through things with Zoe health wise. She had a tongue and lip tie correction done, so stretching now takes on more than just the rest of her body, but her mouth as well. Currently, she won't be indulging in a smash cake or first cupcake except maybe the tiniest dabble. While working with Speech therapy here in Asheville, Zoe needs to have her airway checked as she tends to have a squeaky wheeze and some vomiting after just drops of breastmilk. Teaching our baby how to swallow was never on my expected mom list, so now we need to see more specialists to ensure her safety as she attempts to swallow.
Aside from feeding concerns, we have been giving a low dose of antibiotics to ensure her UTI's stay at bay. We got a scan and have an appointment with a new specialist at the end of the month-Urology! On this topic we ask for lots of prayers and good vibes as we are hoping we have healthy kidneys and that this is not a larger problem. Simple infections, sicknesses and other "minor" complications for most children can impact Zoe's Hydrocephalus in a big way. Her shunt can function poorly and the fluid in her brain is at risk of swelling again if this happens.
On the good news front: We had a good MRI for Zoe's brain and see more tissue filling in where cerebral spinal fluid once occupied. Her ventricles are still very enlarged, but Neurosurgery has explained that she is expected to just have large ventricles from here on out. Overall the shunt is working well and Zoe's little brain is recovering. This shunt and condition will be lifelong for her and we will always have to keep an eye on its function. Zoe also received a good check up from the eye doctor who, like many, was very surprised with her ability to track, her eye contact and no apparent Cortical blindness (a common side effect of the area of her brain damage).
Zoe has also been on hospice since her release from the hospital with her shunt placement. We have had weekly visits from an amazing nurse through Hands of Hope based in South Carolina. This has been a tremendous comfort knowing that we have someone medically trained to look for warning signs and make sure Zoe is maintaining a stable baseline. Due to Zoe being a good health streak, we are looking at 8 more weeks until she graduates hospice and moves into Palliative care-a more "as needed" service.
Overall she's wiggly, smiley, adorable and becoming playful! Looking forward to stronger head and trunk control and a happy baby!
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