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Hello Dymond... My name is Kimbra and my son's name is Dillion... He is 3 years old, and was also born with Hydranencephaly... I would be more than happy to be of any help or support I can be to you... My son has a website www.ourboogieman.com please feel free to check it out if you would like

I just wanted to say hi. I hope and pray everyone is doing ok. Kimba, I went to your website. Its beautiful. You son is so hansom. I know how it is to have a special needs child. I just wanted to say. You are a great mom. Your son is lucky to have you in his life. Wow, Its a wonderful story..............My son lost oxygen at birth. He didn't suppose to make it pass 3. He is a fighter. He is now 9 years old. He beautiful.....I will pray for all of you and your families. God Bless

Dymond, You and i spoke while you were 30 something weeks preg..... This is not a lie everyone, there is a disease such as she is speaking of. She accidently added an r in the spelling though. It's called hydranecephaly. The fact sheet on the disease says "Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits. Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterized by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12th week of pregnancy. Diagnosis may be delayed for several months because early behavior appears to be relatively normal. Some infants may have additional abnormalities at birth including seizures, myoclonus (spasm or twitching of a muscle or group of muscles), and respiratory problems."

Dymond, I found this site online, and it has a parent support group, maybe you should look into it. I wish you and your sweet baby girl the best, again you are more than welcome to e-mail me to talk.....adelong508@yahoo.com

The site is: http://health.groups.yahoo.com/
group/hydranencephaly/

Thats
the support group..... Rays of Sunshine is a site about it too. My best advice is to sign up for the support group, because im sure noone here knows much about it. Also, do all the research you can on it, so that you are aware of what is to come. According to this site, children with the disease usually dont make it past a year old..... I'm so sorry..... God bless you!

sry its been so long. my health problems did start during my pregnancy, and got alittle worse afterwards. i do not have help on a daily basis, i am alone but i beileve i am handling it well! my baby girl has a website- www.babiesonline.com/babies/l/leximarie go check out her pics. its not compeletly done yet but its getting there!

Hi Dymond!!!!! It is nice to hear from you. See all the support and love you and your angel is receiving. Wow, I never knew there are so many good people in the world..........I saw her!! She is beautiful. Wow, you are so blessed. She looks great.............I am sorry to hear about your health problems from pregnancy. I had health problem from pregnancy too. I had HELPP. Something you get after preeclampsia. I still feel bad every now and then. I hope you are feeling much better. Please remember to take care of yourself. Sometimes we forget. .......10 whole months!!!!! Wow, she has grown. 10 months and ready to rule the world....My little guy is 12 months. He was also born early. 32 weeks and you can't tell. Thanks for telling your story and updating us. I am so happy to hear your little girl is doing ok. Bless you Dymond!!! Congrats on being a good mommie!!!!!.......Smooches!!!!

You all need to go back to school for english class!

Hi Dymond.. I believe you and im so sorry. I know things in life can get tough but hold on..Ask god for his help and you will recieve. All you need to do for you and your newborn is just believe she;ll get better have hope and that will keep you going.... I know it may seem useless but try it:) And all the luck goes out to you.

English should have been spelt with a capital E there. Just thought you would like to know. Don't want you to make an ass of yourself again. It's nice of you to warn people to go back to class though. I guess you don't want them to end up like you, huh? Thanks Sweetie.

Would love to talk to about your beautiful baby girl. My daughter passed away at two months old with Dandy Walker. Hope to chat soon.
Regards Rebecca A (Australia)

hey everyone, sry its been awhile again...things r alittle crazy around here...nothing bad with lexi shes doing great! shes startign to try to sit up and her first tooth is almost in!!! thank u all for caring and wanting to talk to me about my angel.....and rebecca....feel free to write me through email at dymondcolon@aol.com or my sn dymondcolon !!

Hi Dymond...My name is Brooke, Yes I guess I have been in your situation. My son Logan, was born with hydranencephaly also. He only has his brain stem too. I was 18 when i had him. Logan is now five months old but has been having seizures and spasms for a couple of months now. I know how it feels to see your child in pain. My lil boy, Logan is also blind, which usually comes along with the hydran. If you need anyone to talk to or any questions because I have done alot of research on Hydran and I talk to many mothers who also have. Well, anyways here is logans website and address. please visit his site to learn more about us. It isn't quite done but so far, so good. Thank you, Brooke.

http://www.logansjourney-hydran.zooms
hare.com/

logan_jay_the_miracle_baby@yahoo.co
m

Oh and by the way! It's awesome that your lil girl is a miracle. My boy is too...With the Hydranencephaly...The doctors didnt' give him over six hours on life support if he "actually lived to birth" lol its wonderful for what God does for us huh? And for those idiots who dont believe you...Have a little faith in God people!

You need to quit being so hard on Dymond about her spelling. Your spelling isn't any better. Maybe she has "tired mom disease". My prayers are with you Dymond.

Old stuff!!!! I have Brain Farts too!!!! We are over that. I said "I'm Sorry". Read the whole post before you make a comment......Dymond!!! Me again!!! I just posted on your other thread. I will say it again. I am so proud of you. You are a Great, excellent, wonderful...ok I'm running out of adjectives.....heeehee....Mother!!!!.....Keep up the good work. I am so happy to hear about how well Lexi is doing. I love hearing about Lexi !!!!!! Take care of yourself. You and Lexi are in my prayers.......Avery(oldest son) is still learning sign language. He is getting around much better. Boy, he is Tall!!! I think he will get to 6 feet and over. Jordan (youngest) is taking his first steps and hitting everyone. The average 1 year old!!! I am a proud mama!!!......God bless!!!!!

To respond to what you said: I am pregnant 7 mo, my son was diagnosed with hydrocephalus. I don't even know where it comes from. They have ran several test on him and me. They say that I might not even go full term. His head might be a little too big. And I don't know really where I stand right now with him. Any thing could happen. But stay strong and if God has a will he has a way

I'll listen and I undestand. My address is Doahandshelle@hotmail.com. I work in a hospital and I know how it feels to not be able to do anything.