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Hey Dymond! How are you and precious Lexie doing? We haven't heard from you in a while and I was just wondering how things are going. I am sure you are looking forward to the holidays! Good luck and our prayers are still with you!

hello all. sorry it has been FOREVER since i last came on. me and lexi are doing so good. lexi is now 19 months old. she is still having developmental problems but we are slowly getting there. she jus got done with all her check ups with all 7 specialist and they have all said that she is now to where she only needs check ups once a year!!! i am so happy. she went and saw her neurosurgen today and they said everything is going great. she is so content now. i dont have to hold her 24 7 and she puts herself to bed now. she loves the pool and taking bathes. i still get way stressed but i think that with all thats going on in my life i am really depressed. but not jus becuz of lexi. i am so happy with her progress and i cant get enough of her. keekee, im not sure if you still come on but my email is mysweetkiss909@yahoo.com if you wanna get some new pics! i got myself a dig cam for xmas so i take tons!! if anyone else would like some- feel free to email me! take care!!!

I'm glad you kept everyone posted and I'm happy to hear your little one is doing good. But I think you should come to the other forum as many of the moms you chatted with way back have moved over there. http://www.forumshost.net/fo
rums/index.php?mforum=family
I'm sure everyone would love to hear from you and you can post pics of your little girl on this website too!!!

i tried that link but it said the site doesnt exsist.

Take out the dask in the word forum,and the + sign should stay.. Hope the link works please let us know.

dymond, I found a little info for you.....hope it helps? God bless and your in my prayers!


I am a neonatal ICU RN and have taken care of many newborns with this condition. It means the spinal fluid in baby's head does not drain properly and backs up into the brain. Many times a shunt is put in from the brain to empty into the abdomen. Many children live on to have happy normal lives with this condition as long as it is taken care of early on. It certainly will be trying for you though to go through that with your child.

Sorry didn't see my two mistakes take out the - in the word forum,and keep the = sign in the address,sorry for the typo's

to dani, thank you for the info. she did have a shunt placed in but her head is sstill very very heavy and that is why she cant hold it up alone. she trys so hard but gets too aggrivated. and also- she does have a problem witht he fluid but she only has her brain stem. the rest of the brain is absent.

Dymond you are so incrediable!I have watched this post for a few days not knowing why I couldnt write to you (duh I needed to be registered)Anyway you are truly amazing and very blessed.Your baby is still here cause she is well meant to be.I give it to you ,not only are you a teen mom ,but you are a sinlge mom and if that ain't hard than I don't know what to say.You also have came so far with your baby and now finding out that you don't have to keep going to the doctors you must be so proud of yourself.Your daughter is doing great cause of you.I 'am sorry that I don't live close to you ,and its a good thing cause you would get tired of seeing my face......smile.You'll see in time you will find a cool friend that will be there for you.I know that it is nothing like having someone to be there for you but I can try to be a internet friend.........good luck and keep up the great work.......god bless.

Hello dymond, My name is Mary and I have some idea of what you are going through. My daughter who is now 29 months old has Hydranencephaly. While 5 months pregnant, Doctors diagnosed her with alobar holoprosencephaly. I was told she would be stillborn. After she was born they told me to enjoy every moment because she wouldn't live for more then a month. At 1 months I noticed her head swelling. I was told I was being overly cautious because with alobar holoprosencephaly there is no reason for the head to swell. At 2 months her head size was 52 cm. ( My head circumference is 54cm) I was rejected by numerous doctors, neurosurgeons and specialists because of her prognosis. Fed up with going no where, I took her to the ER. After a CT was done she was diagnosed with Hydranencephaly, which fit all the symptoms she was having. At 3 months she had the shunt put in. Doctors really have no idea what the brain is capable of. I saw the MRI's and saw that all that was there is a brain stem. They tell me she has no cerebral tissue and a very disorganized abnormally formed cerebellum. (part of the mid brain) She does not possess the parts of the brain that allow her to hear, to feel pain, or to have the ability to eat yet she can. She has always been able to eat from a bottle. At 6 months I was able to introduce solids. Now she is able to eat stage 3 food which requires chewing. Is your daughter able to eat solids? She just had a vision evaluation and is blind but does respond to light. My daughter hates the dark. Does your daughter respond to light and dark? My daughter, Anastasia, loves music. She has physical therapy. She is unable to lift her head for more then 30 seconds due to it's size. I can understand your frustrations with people. Hydranencephaly is very rare. Also, it is not genetic. Neurologists believe that while the brain was being formed as a fetus that a blood clot occurred and obstructed any further development. I have searched many websites and find the same information, which in no way is helpful to a parent of a child with this. I have also looked for parents with children that have this and the majority that I find, their child is deceased. Please if you have any questions, don't be afraid to ask. I was 21 when my daughter was born. I am now 24 and a single mom like you. I would be very happy to help in any way that I can. It really does help to talk to someone. Sorry that you have so many negative responses. People don't understand when you tell them you have a child without a brain because society says it's impossible to live without a brain. Well, my 29 month old daughter is proof and so is yours. Best wishes to you and your little girl.

Mary,

Hydranencephaly. dot com has a lot of info. There are also a couple of yahoo groups, socialtalkhydranstyle AT yahoogroups is a pretty good one. There are tons of families who have little ones (and older ones) with hydran. Mine are 12, 8,6,and 5. All adopted, all hydran....

Karin