9/2 update
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BEElieve In Benny
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BEElieve In Benny
As a medical mama, I wish more receptionists were trained with compassion.
Today I called to get Benny’s EEG results. The first lady transferred me before I could even finish explaining. The second told me, “His EEG is abnormal, so you’ll have to wait for the doctor to call you.”
Ma’am… those words, without context, can crush a parent’s heart. We don’t just hear “abnormal” — we hear fear, panic, and a million unanswered questions. My mind immediately spiraled: “Was that one? Was this one? Have I missed something all along?”
Within the hour, our neurologist called (praise God for quick mercy 🙌). He explained that Benny’s EEG will never be “normal” because of his brain injury — but here’s the BEST part: Benny’s EEG has actually IMPROVED since the last one! 🎉 We are starting to wean one of his seizure meds tonight, and next week we’ll discuss removing it completely.
Bottom line: Weaning phenobarbital doesn’t change Benny’s injury, but it can give him the chance to shine through more of who he is without the fog of this medication. Many parents describe it as “finally seeing more of their child.” And we truly long for This and strive for this daily. All the therapy’s, treatments, intensives are paying off and we will never be able to thank all of you for supporting Bennys journey!
God is so, so good.
To every receptionist, nurse, and staff member: please, when you’re relaying news, think like a parent. Think of your own loved one. Compassion costs nothing but can change everything in that moment!
And to all my fellow medical mamas — you’re not alone. Keep advocating, keep asking the hard questions, and keep clinging to hope.
#BeelieveInBenny #MedicalMama #Godisgood
Today I called to get Benny’s EEG results. The first lady transferred me before I could even finish explaining. The second told me, “His EEG is abnormal, so you’ll have to wait for the doctor to call you.”
Ma’am… those words, without context, can crush a parent’s heart. We don’t just hear “abnormal” — we hear fear, panic, and a million unanswered questions. My mind immediately spiraled: “Was that one? Was this one? Have I missed something all along?”
Within the hour, our neurologist called (praise God for quick mercy 🙌). He explained that Benny’s EEG will never be “normal” because of his brain injury — but here’s the BEST part: Benny’s EEG has actually IMPROVED since the last one! 🎉 We are starting to wean one of his seizure meds tonight, and next week we’ll discuss removing it completely.
Bottom line: Weaning phenobarbital doesn’t change Benny’s injury, but it can give him the chance to shine through more of who he is without the fog of this medication. Many parents describe it as “finally seeing more of their child.” And we truly long for This and strive for this daily. All the therapy’s, treatments, intensives are paying off and we will never be able to thank all of you for supporting Bennys journey!
God is so, so good.
To every receptionist, nurse, and staff member: please, when you’re relaying news, think like a parent. Think of your own loved one. Compassion costs nothing but can change everything in that moment!
And to all my fellow medical mamas — you’re not alone. Keep advocating, keep asking the hard questions, and keep clinging to hope.
#BeelieveInBenny #MedicalMama #Godisgood
Comments
Janadalrymple
M.pamvarone
🙏🏻💙🙏🏻💙🙏🏻
Worshipleadersue
Jgilpin