I am a very outgoing 22yr old with congenital hydrocephalus

[jennifer]

Hey

My name is Jennifer

How is everyone out there, I am doing well, I have congenital hydrocephalus, and I live life to the fullest and you can too. I was diagnosed at probably a month old or later, was told that I wouldn't walk talk feed myself or anything, I am now typing to you, working as cashier, and thinking strongly about going to college. If for some reason anyone needs to talk I check this everyday. I have had my same shunt since I was 5 or 6. I like basketball, soccer, and video games. I like going to church on Sunday. Does anyone think that I may have to have a new shunt sometime? WHAT DO I HAVE TO DO TO GET SOMEONE TO TALK TO ME?

[Spiritgal]

Hey Jennifer,

Me again...I sent you a private message earlier explaining how different people use this board...I'm sure that people will reply to any queries you have if they think they can help, 'cos they're a very helpful and friendly bunch! As I said, not everyone here uses private messages, so try not to worry too much. :) With regards to you possibly needing a new shunt..well, most of us do at some stage although you've already done REALLY well getting along as far as you have with no shunt replacement for all this time! Way to go! :) I had my first full shunt revision 8 weeks ago...it's taking time to readjust but I'm getting there...and a brand new shunt is a good thing to have! So don't worry too much about it if the situation arises. Sounds like you're doing great though...let us know what you decide about college!

[kathleenandjoe]

Hello there! I do not private message often at all - I just do not use that route often - so that is why you have not heard from me.

I too am exctied to hear about your college decision! Sounds like you're doing very well, and are active.

Hugs,
Kathleen

[ConnersMom]

Jennifer, when my son was shunted at 15 months he had a big head, so they used an adult sized valve and put lots of extra tubing in his tummy. If babies are shunted young, they may need larger shunts or more tubing when they grow up, or if their shunt fails.

However, sounds like yours is doing great, and I imagine at your age your done growing in terms of head circumfrence and height, so that is good. Congrats on doing so well with your shunt and on pursuing college.

Regarding responses, some people only reply when they have 'advice' or relevant input, don't take it personal if you don't get a lot of responses.

Cheers, Karen

[Brandon's Mom]

Welcome to the forum Jennifer :)

As you can see by my signature, I am the mother of twins (who will turn 19 this month) who both have hydrocephalus. My daughter is in her first semester of college and my son will stay in high school until I pull him out because he is in special education and won't be independent.

Speaking from a parent's point of view, I'm sure your parents must be extremely proud of you for all you have accomplished, as I am of my kids.

[jennifer]

Hey Spiritgal

How have you been? I just got home from my aunts and decided to see if I had any messages WOW!!! Alot of people have wrote me since I have bee gone, wonder if this is real or not, I wonder if they will drop off like everyone else did? Hope to talk to you soon!!!! In some point and time, Will I have to have a new shunt? Were you able to go to college? How do you think I will do?

[jennifer]

Hey KathleenandJoe

How are you? I am fine, just wondering, Who in your family has hydrocephalus? Are they doing well? Are they able to lead a normal life? I got on here today and had a bunch of messages and I may not get my hopes up, because the last time I had a bunch of messages, they stopped coming, Do you think I will have to have a shunt revision sometime down the road? In your opinion, How do you think I will do in college?

[jennifer]

Hey Conners Mom

First off, How is Conner? I am well, How old is Conner? What kind of hydro does he have? I have congenital. Can Conne do most things everyone else does? Can he play sports? I played soccer in high school and it is rough, especially when you have a shunt. Hope to talk to you soon.

[jennifer]

Hey Brandon's Mom

How is Brandon and How are you? I am doing well, I just got back from my aunts and decided I wanted to check this, and when I did I thought this can't be true, I have all these responses and I thought OH NO!!! because the last time this happened, it was like the no one wanted to talk to me anymore, it is like I am boring. I just want to make friends.

[Lemontree]

Hi Jennifer,
How are you?

I am 39, as of YESTERDAY, and I have had a shunt since I was 8 months old. My current shunt will be 29 next month.

This is a good site to check on hydro stuff and there are many informative people here on the subject. Many people have been on for years and will respond, eventually to your posts.

However, we all have other things going on in our lives and sometimes things get busy and life takes over so not everyone is going to be able to get back to you right away.

I went to college and grad school and am now teaching full time. I see 660 kids a week as an art teacher and it makes me very tired at times. A lot of times I come to this site just to read but don't have a lot of energy at the end of the day to sit, think and write.

Good luck to you!

Lemontree

[jennifer]

Lemontree

I guess with your hydro, you don't have any mental disabilities. I have a mild mental disability and I am going to try to go to college, should I tell the administrators at the college that I have hydro, or should I wait til I have a problem?

[jennifer]

Lemontree

Do you have any disabilities due to your hydro? Looks like you are doing a good job at teaching. How hard was college for you? Do you think that someday I will have to have my shunt revisioned? What do your friends and family think of your hydro? Should schools or work, etc. be able to discriminate against you because you have hydro? Hope to hear from you soon!!!!

[Brandon's Mom]

Jennifer,

I'm not sure if this will help you or not but, I wanted to share my daughter's experience to give you some hope that you too can go to college.

Brittany has a learning disability {from a screw-up during a hospitalization where her shunt was externalized and shut off} but she always works real hard and that is why she was able to start college this semester. She did tell one of her instructors about her Hydro, only because she had an essay assignment that had to talk about something she has overcome in her personal life, and she chose her medical conditions as her topic.

She is in a special program at her college for freshman, where they are put in groups and the groups all have 3 courses together. Not only are the students all working together better this way, but the teachers are also working together. In fact, she sometimes has to write one essay for her Psychology 101 course that same essay is also turned in to her English 101 (composition) instructor for a grade. One of the courses she is taking is called CPD (Strategies for College Success) which is helping her learn about what her learning style is, how to take better notes, etc.

Brittany did have an IEP when she was in school but she did has not gone to the Special Students Services office at her college for any assistance yet. She knows they are there to help her, and she will go to them for help if she decides she needs them at any time. Nearly all schools do have assistance available for people with disabilities or learning problems. Brittany's instructors have all been very helpful when she asks them questions and she hasn't needed any accomodations YET. There are also tutors available for most subjects at the college she goes to and she is only at a community college right now, but she will transfer to a university after she gets her associates degree in 2 years.

If you aren't sure IF you can go to college I would strongly suggest you get in contact with schools you might be interested in and ask to talk to one of their advisors to see what they say.

Jennifer, as so many have told you, don't feel slighted when people don't write as often as you think they should. As was said, we all have busy lives and some people just aren't on their computers much. This site isn't like My Space or something like that where the flow of conversation is steady. Hang around and if you have questions or need some support, people are here to try and help one another. This is a support forum and not a pen pal site, but you may very well find not only pen pals who you want to exchange private messages or e-mails with, but also wonderful friends who you become very close with. I have made many friends on both this forum and the one for Child Neurology, and have had the privilege of meeting close to 15 of the people from the forums in person.

Thank you for asking about Brandon and I. He is fine, he is enjoying school -he's in a community based special education class and they have him working a couple of hours 2 days a week at a restaurant. His Hydrocephalus hasn't limited him much but he has several other disabilities which do limit his abilities. I'm not doing nearly as well as my kids are, I have been sick since 2002 and I am more often than not, homebound. My love for my family and friends, as well as my sense of humor keep me going. :D

I hope you're having a better than average day.

[Nikki_Poohs Mom]

Hi Jennifer,

Welcome! And congrats on your well functing shunt. That's AWESOME! My name is Nina and my daughter, Nikki was born with hydrocephalus 20 years ago. She's had 14 surgeries (11 related to her hydrocephalus) 2 for her Chiari and 1 to close an encephalocele. She is now married and expecting her first child any day now. A little girl of her own that will bring her as much happiness, joy, and love that Nikki has brought me through the years. :)

As for the private messages: I myself have never used that function much and have had messages from others and not realized it because I even forget to look up that way :D

Again, welcome!

Nina

http://bd.lilypie.com/KnPum4/.png

[jennifer]

Thanks Brandon's Mom, how much did the twins weigh when they were born? I weighed 2lbs 2ozs. Will Brandon be able to go to college? Do the twins treat each other goood? Hope to hear from you soon!!!!

[Spiritgal]

Hi Jennifer,

In response to the questions you asked me, yes I did go to college and then to University...graduated 10 years ago now! Hydro was only diagnosed for me aged 26 but my NS reckons I've had it since birth and compensated for it as I was premature and had a very quick birth. I think you should give college a go...it's the only way you'll find out if you can do it (and I'm sure you CAN, as many on here have gone). Good luck!

[Brandon's Mom]

Jennifer~ Wow! You were a tiny little baby! My twins were a bit bigger than you, Brittany was 2lbs 7 oz. and Brandon was 2lbs 10 oz. The first month was the only time Brandon has ever weighed more than Brittany. He's a skinny guy because of his cerebral palsy and at almost 19, only weighs 100 lbs (if he's lucky).

No, Brandon won't ever go to college. He won't even graduate high school, he will just get a certificate of completion because he has mental retardation and isn't able to read and write much beyond his name, phone # and address.

The twins treat each other GREAT!!! :D Brittany has been a mother hen to him as far back as I can remember, watching out for him, helping him, playing with him, etc. Brandon and Brittany totally love each other. In fact, Brittany has said many times that she would take care of Brandon if something were to happen to my husband and I. I don't know if I'd ever want her to have the burden of caring for Brandon but just knowing she would be willing makes me very proud of her.

[AMBush]

I weighed 2lbs 2ozs.

How cool! MY daughter weighed 2lbs 2 oz, too! She was born 14 weeks early and was in NICU for 6 months. My daughter (Marijke) has hydro due to a brain hemorrhage when she was only a day or so old. She's almost 13 now, and we are hopeful that she will be able to go to college one day, but she has some mild impairment, so we're just not sure.

Jennifer, you are an inspiration! It is so very encouraging to me as a mom to talk to people who have worked through some of the same struggles that Marijke has. My daughter is incredibly stubborn, and sometimes she doesn't want to put in the extra effort that it will take for her to succeed. If I'm feeling discouraged myself, it's very easy to let her slide a bit and not demand her very best effort. When I see the determination that you are showing to reach your goals, it gives me a boost! Good luck to you in your endeavors.

Talk to you again soon!

[jennifer]

hey Joy

Hang in there, your twins will be something in life, have hydrocephalus only makes us special, and special to have parents like you, so you and your husband keep you heads up high for yourself and your kids, you seem like a good person and that is what your twins need in parents.