Welcome to gabrielslife.org.
My name is Victor and my wife and i have a beautiful daughter that was born with Hydrocephalus.
We are resorting to this blog because we have no one to relate to us as to our beutiful angels condition. You see Casey is 9 months old on 12/26 and she still does not roll over or stand in her crib as well as she cant even hold her bottle. We just dont know if this is normal or not can anyone resond with some help.
| Posted by vdeleon under
December 26th, 2007 at 6:50 am
Do you have Casey in any kind of physical therapy? She should be eligible for early intervention services, which can really help.
Good Luck.
December 29th, 2007 at 8:35 pm
Hi,
My daughter has Hydrocephalus and when she was young she was delayed doing all of her firsts. Now she was also premature and that may have been part of the cause but I brought her to weekly appointments with Physio and Ocupational Therapy. Just a thought but I would discuss this with her peadatrician to see what services are available in your area.
I hope my thought helps, and best of luck with your little angel!!
Vicki
January 4th, 2008 at 1:26 pm
That was normal for us. Our son now 3 does crawl or walk yet. I think he started rolling over 18-24 mo. and now that’s he gets around.
January 4th, 2008 at 4:55 pm
i wanted to reply to your story. my daughter was also born with hydrocephalus. she turned seven on dec 1. the biggest thing that jumped out at me in your storywas the total confusion you are going through. i was right where you’re at and in some ways still there. when grace was born it was a total shock we had no idea there was any problems> the one thing i will always remember is the delivery doctor right after saying he thought he saw fluid on the ultrasound. i cant describe the rage i felt ,he said it just like he was telling me the time of day. the next day the peditrician looked at the cat scan and told me my child would never be normal. then later that morning the ambulance came to take her to a place called kosairs children hospital> i watched them take my baby and i held tough> as i went to my car it was the first time i just lost it> i cried my eyes out wondering why her. i questioned me and my life i questioned everything. i was in the marines and thought that i had something wrong with me from serving in somalia years before. i was reaching for any reason. so i pulled myself together and went to the hospital and thats where i met the man who saved graces life dr. moriarty. this man is a angel here is a harvard educated brain surgeon and i can talk to him like he is a drinking buddy. grace got a temp shunt for two weeks then her permanent after that. she has never had a failure thank good. i sit up at night sometimes scared to death of that day. after we brought her home i went through all the things you are i read the books that say at this age a child should be doing this and that. do me a favor throw those out because they are crap. the last thing dr moriarty told me after her surgewry was to treat her like a NORMAL kid. and thats what i live by. grace couldnt hold her head up till she was 8 months old. her mode of transportation was rolling everywhere then she moved to scooting on her but then walking at age two. what im trying to say is dont compare your kid to other “normal’ kids. its hard man but dont do it. grace has alot of issue and we fight the schools we fight everyone but shes been doing the hard work since day one.i hae so much t say and im sure im rambling but i hope you get to read this and if you every want to me personal email is bobbytransue@sprint.blackberry.net
January 4th, 2008 at 7:40 pm
I’m new to this blog stuff. So I’m just leaving a question: does your daughter have a shunt to relieve the pressure?
January 4th, 2008 at 7:41 pm
I’m new to this blog stuff so I’m just going to ask a question.
Does your daughter have a shunt to relieve the pressure?
January 6th, 2008 at 10:53 am
I would like to say thank you for all your comments . Just to update Kristin & Lea Casey does have a shunt that was placed 6 hours after she was born. Bobby thank you so much for your inspirational story. It is a releif to have someone who is going through the same thing that i am check your email i will be contacting you soon.
As for casey she is laughing and starting to try to roll over. She is very strong and continues her therapy
January 9th, 2008 at 8:41 am
admin;
Casey is in Physical therapy at her daycare center with the help of child developmental services in our community i dont know if this is what is referred to as early intervention but i have been seeing some improvements. Although few but inspirational she is laughing whenever we play with her at she just got her results from the doctor that tells us everything is fine. She is a bit behind in development but i guess that is to be expected.