Hello, my name is Kimberly. I'm a married 24 year old mother of a 5 month old baby girl who was born with hydrocephalus. If you don't know what that is, hydrocephalus is basically water on the brain or excess cerebral spinal fluid in the ventricles of the brain. She also has para-ventricular leukomalacia. If you are unfamiliar with that as well, it is basically softening of the white matter (inner) brain which basically gives a greater chance for cerebral palsy. She has difficulty supporting her head & she eats through her mic-key button. Also, due to her diagnosis of hydrocephalus she has a permanent vp shunt placed on the right side of her head.
Is there anyone else out there with a child with similar special needs?
I personally don't but there are lots of women on BG who do have kids with CP or special needs. I think you'll find good support through them! Sounds rough mama.
It is, sometimes things can seem so overwhelming, but every time I see her smile..she's so worth it.
Quoting Heidi's Mommy!!:" It is, sometimes things can seem so overwhelming, but every time I see her smile..she's so worth it."
This is Miss Heidi. My pride & joy! :)
I do know there's someone on here with a LO with hydrocephalus, but I can't think who right now.
If I do, I will link you to her asap!
Thank you. :) It would be nice to talk to other moms with babies/children with hydrocephalus and/or PVL.
I'm sorry, but I don't know anyone on here that is dealing with this. I just wanted to tell you that your baby girl is beautiful!
Well, thank you! :) She gets her looks & attitude from her momma & her crankyness from her daddy! lol
Quoting Heidi's Mommy!!:" Well, thank you! :) She gets her looks & attitude from her momma & her crankyness from her daddy! lol"
Awhhh, so cute! She looks like a tough cookie! She is lucky to have an awesome mommy!
She is a VERY tough cookie! She went through 2 brain surgeries & a mic-key button placement surgery & had about 5 picc like procedures. She endured a needle being put into her VAD 3 days a week until she got her permanent shut. She's a fighter, my little Mighty Heidi! My miracle baby!
My Son has Secondary Hydrocephalus with a VP Shunt Placement due to a "Brain Bleed" Type Stroke.
But recently we discovered Our Little Cousin ALSO Has Hydrocephalus which may or may not be linked to a Minor case of previously undiagnosed Spina Bifida (he was Just diagnosed in June, & is Going into Grade 2 Next week.).
The other Issues Your Princess is dealing with I can't talk about so Directly.
The doctors say that what is strange about Heidi's hydrocephalus is that they were able to find it while I was pregnant with her & her head didn't get large or swollen at all really.
Quoting Heidi's Mommy!!:" The doctors say that what is strange about Heidi's hydrocephalus is that they were able to find it while I was pregnant with her & her head didn't get large or swollen at all really."
Yeah Neither of My Boys have large Heads. Which was a Bit of a concern with My Son since it could mean his Skull Plates Fused too soon. But nope He's just Perfectly "Normal" & they think his Migraines are Directly Linked to the Foreign Body(VP Shunt) in his Skull. But I'm pretty Sure he's Always Going to be a "Cyborg". "My" Other Boy doesn't have a Shunt, yet, but He's on Watch & Could need one at almost anytime.