Just a list of what Serenity has.. I am not going to name everything, but here goes...
CLOVES Syndrome- A rare progressive genetic overgrowth disorder.. This causes her to have have fatty tumors. It puts her at risk for a lot of stuff.
CLOVES Syndrome- A rare progressive genetic overgrowth disorder.. This causes her to have have fatty tumors. It puts her at risk for a lot of stuff.
Brain abnormalities that cause seizures- Like I said I am not going to list every one of them, but her seizures are life threatening. When she goes into one I don't know that she will ever come out.
Kidney stones- Very painful calcium build ups that pass by going from the kidneys down the ureters then to the bladder through the urethra and out the pee hole. Her last one was the size of a pencil eraser. Yeah imagine that!
Urinary retention- She holds her pee. This caused her to have a super extended bladder and she stopped peeing on her own. To shrink it down she needed to be catheterized every 6 hours then got moved to every 8 hours. Now that she started peeing on her own again it's only when she doesn't go.
Ketogenic diet-It's a special diet for kids that have failed too many seizure medications. This diet makes your brain think that your not eating and give your body the nutrition it needs to survive. It's pretty complicated, but it's keeping my girly from seizing!
G-tube- This is a feeding tube that goes directly into her stomach. She used to eat baby food by mouth, but stopped when her diet when from regular food to keto food.. Eating canola oil multiple times during a day mixed with baby food isn't too yummy. So currently She is fed a special Ketogenic formula through the g-tube so she doesn't have to taste it or all her yucky meds.
(Serenity Needed a feeding tube in the first place because when her diet got switched all of her medications had to be switched to pill form. She would take it by crushing it and putting it into water. You can only imagine what that tasted like. So she started holding it in her mouth then aspirated it (Breathed it in) and got pneumonia from it. So she got a tube that went into her nose down her throat into her stomach. She had that from march-august then on August 16th she got her g-tube )
Cortical visual impairment- This means Serenity's brain can not process what she is seeing all of the time. Sometimes she can see you and other things and at other times she can look right past you.
Serenity can not sit on her own, she does not walk, She doesn't not talk. She has a rough medical life. She does however, smile, laugh, and sing in her very own way. If you have any questions that I have no answered here please feel free to ask.. I am an open book when it comes to her. Knowledge is key to a cure!
-Kara
Kidney stones- Very painful calcium build ups that pass by going from the kidneys down the ureters then to the bladder through the urethra and out the pee hole. Her last one was the size of a pencil eraser. Yeah imagine that!
Urinary retention- She holds her pee. This caused her to have a super extended bladder and she stopped peeing on her own. To shrink it down she needed to be catheterized every 6 hours then got moved to every 8 hours. Now that she started peeing on her own again it's only when she doesn't go.
Ketogenic diet-It's a special diet for kids that have failed too many seizure medications. This diet makes your brain think that your not eating and give your body the nutrition it needs to survive. It's pretty complicated, but it's keeping my girly from seizing!
G-tube- This is a feeding tube that goes directly into her stomach. She used to eat baby food by mouth, but stopped when her diet when from regular food to keto food.. Eating canola oil multiple times during a day mixed with baby food isn't too yummy. So currently She is fed a special Ketogenic formula through the g-tube so she doesn't have to taste it or all her yucky meds.
(Serenity Needed a feeding tube in the first place because when her diet got switched all of her medications had to be switched to pill form. She would take it by crushing it and putting it into water. You can only imagine what that tasted like. So she started holding it in her mouth then aspirated it (Breathed it in) and got pneumonia from it. So she got a tube that went into her nose down her throat into her stomach. She had that from march-august then on August 16th she got her g-tube )
Cortical visual impairment- This means Serenity's brain can not process what she is seeing all of the time. Sometimes she can see you and other things and at other times she can look right past you.
Serenity can not sit on her own, she does not walk, She doesn't not talk. She has a rough medical life. She does however, smile, laugh, and sing in her very own way. If you have any questions that I have no answered here please feel free to ask.. I am an open book when it comes to her. Knowledge is key to a cure!
-Kara
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