(06-20-2010 11:30 AM)cheekymonkey2010 Wrote:  Hi there,
My 8 week old baby (corrected age) was born prematurely and was really sick with sepsis, meningitus & seizures. He now has suspected cerebral palsy (athetoid) and is showing no signs of engaging with us. I am obviously devasted and really struggling to come to terms with what has happened to us. I would love to hear from any other parents who had an early diagnosis of any kind, to hear what helped them cope and get through this awful time.

awww really sorry to hear this :o(
i had a early diagnoses well not exactly diagnoses cus no one seems to like to say what s wrong , but we knew jaimee wud have problems wen i was 32 weeks pregnant we were asked to abort her because she had had a massive bleed in the brain , but we perserveered and when she was born it was very hard not knowin what to expect , but it gets better we have hard days but jaimee is now jaimee i see past the labels and u will soon get there too , jaimee is very delayed and has cp but she will get there as i am sure your baby will xxx

---

teagan mia 03/05/06
ruby hannah 12/09/08
jaimee evanna 07/10/09
jaimee grade 4 ivh hemiplegia cp and global development delay
love my 3 girls all the world mommys perfect princesses xxxx

(08-09-2010 08:28 PM)graysonsmum Wrote:  

(06-22-2010 10:42 PM)linzi74 Wrote:  Hello

My son was born two months early and suffered a severe brain injury. We knew from the beginning that he was going to be disabled. He has multiple complications including infantile spasms, hearing, vision and mobility issues. I know how you feel, I know how frightened you are, how unsure of the future, how you will cope, what will become of your child. But if I could go back to the beginning and tell myself it will be okay, I would because you know what, I have never felt more fulfilled or happier than I ever have in my whole life.

Yes things are very hard and yes there are times when I wished Zack was like everyone else but he amazes me with how far he has come. It is a slow, tough journey and part of it is grieving for the child you thought you would have and accepting the situation you now find yourself in. Please just give yourself time to just be, don't think about the future, try not to worry too much about tomorrow and just love your baby for who they are, you will find your strength and you will find a way of helping your little one. They will go on to amaze you, I promise.

If you get chance take a look at my blog, I write it for other parents who may find themselves in the same situation, it can be a lonely time, but there are others here for you. Feel free to email if you want to ask me anything.

Linzi
x

oooh i wud like to read this blog too please xx i have one for jaimee but its not up to date :o(

Hi Linzie

I would love to read your blog, can you send me the addy, blogging has always been a big part f my life xxx

How very sad that so many babies and their lovely families are having such a hard time - it should not be that way. Our son was born perfect but a car accident at 9 weeks old left him brain damaged. He is doing ok, we found and still do that at home everything is fine - we manage his condition etc but when we are out and he is with other children his own age the difference is massive and we get stressed because of how he is perceived, that is their ignorance and their problem. Take each day as it comes, enjoy the times you have and to heck with everyone else, we are all on here because we are having similar problems, not all as bad as others but we are a sounding board and a friendly ear. To some extent I would rather have an early problem than have a child injured much later in life - our son knows no different and that does help I am sure. Good luck to you and your little one xx

(06-20-2010 11:30 AM)cheekymonkey2010 Wrote:  Hi there,
My 8 week old baby (corrected age) was born prematurely and was really sick with sepsis, meningitus & seizures. He now has suspected cerebral palsy (athetoid) and is showing no signs of engaging with us. I am obviously devasted and really struggling to come to terms with what has happened to us. I would love to hear from any other parents who had an early diagnosis of any kind, to hear what helped them cope and get through this awful time.

Hi. Jack was born at 25 weeks and was in ospital for 6 1/2 months - at one point they said that he would die (no percentage chance of survival at all!). Anyway he proved them wrong and fought everything that was thrown at him. He is now 4 and just started school. He has cerebral palsy, auditory neuropathy, cerebral visual impairment with secondary nystagmus and is behind in his development. However, everything seems to be relatively mild and he is attending mainstream school. It has been a roller coaster but you do cope and it's fantastic everytime a milestone is met because it has taken so much longer to get there. Jack wasn't even rolling over on his first birthday and not even crawling by his second. But now he walks with splints and has just made his walker redundant!! Though he does fall over every few steps ;o). So live with hope and enjoy everyday because all children are special. x x x

[quote='cheekymonkey2010' pid='14852' dateline='1277033456']
Hi there,
My 8 week old baby (corrected age) was born prematurely and was really sick with sepsis, meningitus & seizures. He now has suspected cerebral palsy (athetoid) and is showing no signs of engaging with us. I am obviously devasted and really struggling to come to terms with what has happened to us. I would love to hear from any other parents who had an early diagnosis of any kind, to hear what helped them cope and get through this awful time.
hi Alex was born at 33 wks after a difficult birth he was starved of oxygen for 12 mins. he has very little sucking, swallowing reflex gastrostomy fed, quad spastic cerebral palsy, chronic lung disease. he spent the first 3 months in scbu and another month on the childrens ward. this did have its benefits Alex had a full team of specialists looking after all aspects of his care salt, ot, physio..... i visited him twice a day all the time he was in hospital and when he came home was full of enthusiasm i think i was on automatic pilot? taking care of his every need i dont think the reality of having a disabled child had sunk in? then there came a point were i couldnt cope and no one noticed because i had always been super mum and wasnt expected to fail. all fall down i crashed and burned had to call in social services for help, my only advice would be take every day one by one and remember you wear your knickers on the inside of your trousers not the outside ha ha oh and it does get better xx