Microcephaly
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- Wyświetlenia: 230
- Utworzona grupa: May 2008
- bebo.gazeta.pl/microcephaly
- Ja, o mnie i jeszcze raz ja
- For anyone going through the same stuff we all do when our kids suffer from this condition, and for all those who go through similar things with their kids because of other conditions.Our youngest son has microcephaly (very small head) which has stopped his brain from developing, and as a result he is developmentally delayed.He may never walk/talk and is peg fed only and on a load of meds mainly for epilepsy.He is also very small like a baby although he is now 3.
Angelo was in hospital for the first 7 month of his life.His seizures started a few weeks after he was born.He was taking hours to go through bottles in the hospital, and after taking tiny amounts he would just be sick, bringing it back up.
The weight started dropping off him, and he was only 4lb 8oz to begin with. So after 5 days, they were extremely concerned and took him back up to special care. He was born with clubbed feet and had to have casts on, then Dennis Brown boots n; bar, then splints.
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Angelo
He was fed by NG tube but just vomitted all the time, and couldn't gain weight.They were reluctant to do a fundoplication (to stop him being sick) because of his size, but if they left him he would've died, so it had to be done in the end.It was a great success and he got a mickey tube put in at the same time so no more having to pass NG tubes...he constatntly pulled them out.0 komentarzy 554 dni
My brother has microcephaly,last year we set up th microcephaly awareness day on the 30th of September.the american charity has heard about it and are going to participate, if you go on robins microcephaly support group on facebook you will find out about it.Also if you go on childrenwithmicro.org you can download the posters and press release.We wanted to put as much information out there because noone has heard about microcephaly.I also have a group for my brother on bebo
Robin is also hoping for the first microcephaly convention in britain to go forward,so please contact me and i will pass on any information you would need.robin wants to meet other people with microcephaly as it is so rare
love to Angelo.
from carrie-ann freeman
Can i just say Angelo is so cute. So adoreable. I have a son with special needs. Although he doesn't have microcephaly he was born with only 30% of his brain and the rest is filled with fluid. I think it's great to be able to talk about my son and other people's kids about similar things. I feel that unless u are a parent of a child with complex or other medical needs you can't totally know how it feels day in day out.
Take care
Joanne
My daughter Evelyn is 4 months old and has microcephaly... we are undergoing tests right now to find out the cause..... She also has had to have a PEG tube inserted as she stopped eating. ...I go from being hopeful to fearful. I am a special education teacher and I know that children surpass our expectations every day. it is nice to connect with others. Any connections with other parents who can offer support is helpful. Thanks for starting this!
I am 31weeks preg 2 a little girl and her head is only at 22weeks but everythig else is normal. she has alot of empty space in her brain.i am so scared.
My little sister Leah has Microcephaly. She is my life and I wouldnt have her any other way. I think it is great to have ths site because everyone is on the same boat. x
hi how is everyone i hope you and everyone hada great christmas
jodi
HI MY NAME IS EVELYN WE ARE FROM WEXFORD IN lRELAND WE HAVE A BEAUTIFUL SMALL GIRL CALL DAVINA SHE HAS MICROCEPHALY SHE IS 20 MONTH OLD WE ARE LOOKING FOR SOMEONE WHO IS THE SAME AS HER
Hi pls can u join my group
www.bebo.com/carersforlife
Thank u xxxxxxxx
hi all come join our fab friendly forum always having a laugh
hi i've just found your site,my daughter leah is 11 years old and has microcephaly and cerebal palsy she got her gastrostomy done when she was 2 years old and it has been a life saver, leah's problem now is her scoliosis her rib has bent over her hip and she is n a ot of pain but she is a joy and a wee doll she is not one bit of bother and feel blessed to have her, think this is a great idea having a site lets us know there is loads in the same boat.
http://petitions.pm.gov.uk/radar-key/
hi everyone am looking for some help here the above link is for a petition to stop radar keys for disabled toilets being sold to anyone on places like ebay please please sign xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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hi pamela well done on starting this group xxxxx hope u are all well loads of love xxxxxxxxxxxxxxxxxxxxxxxx
hiya i've just become a member of yur group. little Angelo is so beautiful. i have a liitle boy called Nathan who has the condition Hydrocephalus. although my son does'nt have the same condition as yur son, i can relate to how hard it can be during the hard times. Lots of love to Angelo, yurself and yur family.
p.s. i have a group 4 my son www.bebo.com/l-w-hydrocephalus