Hello all, I am really interesting in being in contact with anyone who has had Hydrocephalus from birth, or who is the caregiver or parent of a child that was diagnosed before of soon after birth.
I am the Great Grandmother of a beautiful 3 mo. old Great Grandson we call "little DeJay". He is amazing and owns my heart!
I have so many questions and concerns. I would love to have someone who has experience with this condition, or who has this condition who doesn't mind sharing with me and assisting me in understanding, so that I can better help my Great Grandson and his Momma and Dad.
They all 3 live with me, so yes, I am quite involved, it would help me so much to understand this darlin baby boy, what he must be feeling, and going through daily. Babies, can't tell you....you can only do your best and HOPE your doing the best for them.
Sometimes I wonder, is he suffering pain that we dont' know about...I have read that some of the members here have shunt pain all the time, and I wonder does little DeJay? He doesn't appear to...but, how could we know?
I hear his little tummy growling and making noises and I wonder...is the tubeing causing him discomfort? They (the medical society) are not encouraging as you would expect and hope that they would be.....not at all.
They ACT like you should NOT pursue life liberty and any kind of justice for these baby persons with this condition. NO JOKE.....very serious....we have had MANY MANY problems with that issue.
I, we, our family unit, LOVE this darlin little guy....all we desire is to CARE and Love him for as long as the Lord will allow. Anything anyone with any experience with this condition can share I am sure will be helpful to us.
God bless you, and KEEP you HEALTHY! Thank you: Sha
I am the Great Grandmother of a beautiful 3 mo. old Great Grandson we call "little DeJay". He is amazing and owns my heart!
I have so many questions and concerns. I would love to have someone who has experience with this condition, or who has this condition who doesn't mind sharing with me and assisting me in understanding, so that I can better help my Great Grandson and his Momma and Dad.
They all 3 live with me, so yes, I am quite involved, it would help me so much to understand this darlin baby boy, what he must be feeling, and going through daily. Babies, can't tell you....you can only do your best and HOPE your doing the best for them.
Sometimes I wonder, is he suffering pain that we dont' know about...I have read that some of the members here have shunt pain all the time, and I wonder does little DeJay? He doesn't appear to...but, how could we know?
I hear his little tummy growling and making noises and I wonder...is the tubeing causing him discomfort? They (the medical society) are not encouraging as you would expect and hope that they would be.....not at all.
They ACT like you should NOT pursue life liberty and any kind of justice for these baby persons with this condition. NO JOKE.....very serious....we have had MANY MANY problems with that issue.
I, we, our family unit, LOVE this darlin little guy....all we desire is to CARE and Love him for as long as the Lord will allow. Anything anyone with any experience with this condition can share I am sure will be helpful to us.
God bless you, and KEEP you HEALTHY! Thank you: Sha
Seems as of the past couple of days our little DeJay just hasn't been himself....he has had a couple of seizures but that is not out of the normal for him. He has just been very cranky, and I feel he is suffering some sort of pain....now with a baby.....it's so difficult ....they can't tell you where they hurt...of course you know that.....I don't know if it is his head, the shunt, his tummy....the tubing there...or what ...ya know...very frustrating....cause you KNOW they are suffering something....but you just don't know what....I noticed this morning that around his shunt there seems to be more fluid then normal.....I don't know if that is because he has been laying down more....or if it is a malfunction of his shunt......right now we are just watching him and seeing what we can.....if this fluid doesn't disapate as it should we will be putting in a call to his Neurologist in Madera.....we have to travel almost 100 miles to see his doctor.....so it's not like with every little thing we can just run to the doctor....he has a local neuro. also ...but he doesn't do anything with the shunt ordeal.....only with his seizures.....sigh....so....it's difficult....HOPEFULLY today will be a better day for him....! I pray....alot....lol....thank you for extending your care and support....GOD BLESS YOU....Sha