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My Journey So Far

Vikki2

Hi I am new 2 this site & think this site & forum is absoultely brilliant for support & advice & I would like 2 share my sons journey so far, so here it goes

My son Luke was born 10 weeks early, had a severe bleed & had 2 b resuitated & kept on oxygen 4 most of his 7 week stay in Special Care.

We knew there was problems but I guess it was just a case of thinking (& hoping he was just behind in his development!!).

At 15 months he was admitted 2 hospital 4 a couple of days, which turned out 2 b a stay of 3 weeks!, to be then told at 15 months, he had CP which really knocked me off my feet.

Since then he has had an operation 4 a Gastrotomy 2 feed him, which has benifited greatly & he is now piling on the weight, & another operation 2 stop him from refluxing, also another great benifit.

It has now been 4 months since the operation, he is now 19 nearly 20 months old & all he still seems 2 b doing is laying on his back flapping his arms & legs about.

Went 2 the Physico 2day 2 b told she doesn't think he will walk without some kind of aid. Which kind of upset me AGAIN!! But was cheered up my having a proffesional photoshoot 4 Luke & his cousin which was absolutely fantastic

The top of bottom of it is we are still coming 2 terms with it all & looking @ the posts on here it is normal 2 have DARK days which is comforting, as it seems I was the only 1 & I felt awful 4 just admitting 2 my family let alone any1 else. But slowly we are accepting everything that is thrown @ us, but still have DARK days, usually when we have had an appointment of some kind.

Sorry 2 go on but its just nice 2 b able 2 tell Luke's story 4 once with others who actually understand what we are going through & I have found several posts very comforting & reassuring so thanku 2 SCOPE who do a fantastic job

Vikki, Dave & Luke x

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Comments

Vikki2

I just would like 2 add/ask:-

Has any1's child not been told specifically witch type of CP their child has? We keep asking but no1 can give us a straight answer. Any comments would b appreciated.

Brandy

Hello Vikki, Dave & Luke,

It's like being on a rollercoster you will have your up's and downs! You will get stronger with time.

My son is now 6 and was diagnoised with CP quadriplegia when he was just 11 months and although I have accepted this I still have those DARK days at the end of the day we're only human.

My son also has a Gastro to feed him and it helped alot with his weight. We have been told that he won't walk, he dosen't talk but he can babble and we are sure he can say hello and no but were not 100% if it's more that were just wishing! He knows how to get our attention though his not silly he will cry and when you get there he will stop and even give you a smile! Oh and there is no tears lol. He also loves to kick his legs and move his arms about and love loud music!

A friend told me when I had my son and it has helped me that "special children are given to special people", I hope that helps you!

Anyway good luck to you all take care and keep your chin up.

From Jo x

renacahill

Hi Vikki
My daughter was told at 7 months that my grandson has quad spastic CP. (All limbs tight and difficult to move). Now at just turned 2 he shows no signs of the spasticity you read about in the books and is more athetoid in his movements. That is to say many children start out as one thing and the picture evolves at around 2-3. Often tiny babies are floppy and move little, then they may become stiffer as they get older. It is very confusing for us lot who are not experts and sometimes even the experts get it wrong. Maybe your baby is still evolving? Depending on what part of the brain is damaged (according to the MRI) is an indicator of what may occur, but not always accurate! Take all the help and physio you can, early intervention is essential. Yes, you will have dark days, but the small lovely things they do, every tiny achievement, is wonderful!!

twinmummy

Hi!
My little girl is Nearly 2 and was diagnosed with CP at 15 months aswell! Her and her twin sister were born 11 weeks early and were in Special care for 9 weeks. We were told when Grace was diagnosed that she would probably never walk without aid, or feed her self, of talk well, and a few other things! This is very upsetting for us as her Twin sister is running about and it doesnt seem fair that Grace cant. However she is a very determind little girl and last month she crawled! (more of a wobbly tummy shuffle but I like to call it her Crawling) I have never been so excited!! We were told not to expect this for a long time as she has very little head control!
I know how you feel about the Dark days, I have had a few! But I thought I would share Graces achivements with you as its these little milestones which make everything look brighter!
Sending much love! xxx

phillips123

Hi Vikki,

Just wanted to ask some questions about Gastrotomy. My 4 year old son Kai is under weight and is up and down from Great Ormond street regarding feeding.

He is fed orally but can not eat lumps. I have been fighting for so long to keep him like this but lately he is screaming through every meal, and to be honest doesnt enjoy eating that much.

But because this is new i dont want to put him on a tube, but always wondering if i am doing the right thing.

He is being treated at the moment for reflux but so far meds are not helping him. Still crying through all meals and up for hours at night in pain.

So they have talked about Gastrotomy and the other op for reflux. Can Luke still eat food??

How do you find it all and how did you feel on the operation, that scares me too.

Any info you can give me would be great.

Many Thanks Gill & Kai