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Cerebral Palsy support group


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#1 Therese

Posted 09 July 2011 - 08:45 PM

original.gif  New thread time original.gif

Your last thread is Here

#2 kristyk77

Posted 10 July 2011 - 09:37 PM

Thanks so much.
Yeah - Hayley ended up with the NG tube. She is piling on the weight now - horrible for my already bad back, but great for Hayley! The best thing is she is now sleeping through!!!!! Praise God!!!! It has been decided she was waking from pain and then unable to go back to sleep because she was starving hungry! She has only woken twice in the past two weeks - both times I gave her a massage for 20 minutes and panadol, then she went right back to sleep! Been wonderful. Plus she's very slowly starting to eat a little again. They are hoping to take the tube out around Christmas time.

Anyone else here been down the NG tube road? Any advice etc? One thing I'm not sure of, is that our local hospy here says we can keep the same tube in for 6 months or more!???

#3 alisona

Posted 11 July 2011 - 09:13 AM

Sorry - I haven't posted in here for ages, but just saw your post Kristy.  Ashlea used to have an NG - and yes you can leave the tube in for ages.  I probably didn't leave hers for 6 months, but definitey 2 -3 months (unless it got blocked - but that's a whole 'nother story).

#4 Nomes74

Posted 11 July 2011 - 07:42 PM

Hi Kristy, my son is 18months old and has a NG Tube since birth.  We had a birth trauma which left Harvey with no suck or swallow.  He now has a delayed swallow but most of his feeds still goes down his tube.  We learnt how to put the tube in before we left hospital as it would be my worst nightmare to go to the hospital at all different time of the day and night to get it replaced.  The only thing is we have to change Harveys NG Tube monthly so I little surprised that you can leave Haley's in for 6 months. I am also another mum having another baby (which was a total surprise) and am currently 30 weeks.  I did however spend weeks thinking how are we going to do this with Harvey being so young and having special needs, but after getting over the shock we think this baby will be a huge influence on Harvey's development and to help us overcome the grief that we have over Harveys birth.  I am however having a c/section this time.

Hope all is well with everyone else and some of you are enjoying the school holidays with sleep in's.

Naomi
xxx

#5 kristyk77

Posted 24 July 2011 - 08:29 AM

Hayley pulled out her tube for the first time, last weekend. Turned out we couldn't get it reinserted at our local hospital as noone there has updated qualifications, and the nurse who did it is going to be talked too. We went down to Brisban where they taught us to reinsert tubes etc. They said the tube Hayley had had in was only a short term one and was already perishing when she pullked it out!!! We have now inserted a long term tube - but the maximum length of time it can stay in is 8 weeks - so not sure where the 'lifetime' tube idea came from. We were also taught how to aspirate before every feed - which we should have been taught to do in the first place! Not at all happy with our local hospital! At least it's all sorted now, and we know what to do ourselves. Hayley's doing well. Over a month she has put on just under 500gms! She's actually starting to look less like a supermodel now! biggrin.gif

#6 Nomes74

Posted 24 July 2011 - 11:44 AM

Hey Kristy, I was a little surprised that you mention that it was a long term tube and could stay in for 6 months.  This is why we learnt straight away how to reinsert them as not a lot of nurses know how to put them in, even at the Childrens Hospital. Even when we change Harvey's tube monthly, the end does get a bit kakky and if he happens to pull it out earlier we always reinsert a new one regardless.  We also but 30 mls of water down the tube after feeds just to keep it clean.  

I can understand how angry you are and imagine if the tube caused an infection due to some bad advice.  I would just keep in mind that I think 8 weeks is still a little long.

Great to see Haley putting on weight which is the main thing.

Naomi xxx

#7 mamacantik

Posted 03 August 2011 - 08:54 PM

Bumping us from page SIX(!!!!). I hope that during this CP awareness week, all you lovely ladies are feeling well supported and appreciated for all that you do for your families AND also to say that I hope all your gorgeous kids are starring in their own way. As I've mentioned to friend on FB, I think best way to promote CP awareness of by looking at what our kids CAN do, now what they can't. So let's celebrate their amazing achievements.

Today, my  gorgeous boy celebrated his 100th day of school day with a day of fun celebrations with all his peers. He is loving school and doing so well with his reading, writing and maths especially. One of his classmates has planned her whole birthday party around activities that he'll be able to join in with (and would only confirm the date once I could confirm he coud attend). I am so proud of all he's achieved since starting school.

Hope you have some achievements to share too? xo

Edited by mamacantik, 03 August 2011 - 08:55 PM.


#8 Divine33

Posted 03 August 2011 - 09:06 PM

QUOTE (mamacantik @ 03/08/2011, 08:54 PM) <{POST_SNAPBACK}>
Bumping us from page SIX(!!!!). I hope that during this CP awareness week, all you lovely ladies are feeling well supported and appreciated for all that you do for your families AND also to say that I hope all your gorgeous kids are starring in their own way. As I've mentioned to friend on FB, I think best way to promote CP awareness of by looking at what our kids CAN do, now what they can't. So let's celebrate their amazing achievements.

Today, my gorgeous boy celebrated his 100th day of school day with a day of fun celebrations with all his peers. He is loving school and doing so well with his reading, writing and maths especially. One of his classmates has planned her whole birthday party around activities that he'll be able to join in with (and would only confirm the date once I could confirm he coud attend). I am so proud of all he's achieved since starting school.

Hope you have some achievements to share too? xo


Totally agree with you Di. Oh how lovely wub.gif

I am just so proud of Deana, the all adore her at school.

She gives cuddles and is very loving. Dena has received several awards so far this year.

She has come so far with language,maths and is still loving her music.

I am so blessed wub.gif

Edited by Divine53, 03 August 2011 - 09:07 PM.


#9 TheSmithFamily

Posted 04 August 2011 - 07:00 AM

Well done to both Satria and Deana on such amazing school efforts and socializing xx

Cooper is also loving school moreso the social aspect. He has just started learning songs and dances for the end of year concert. He and his buddy have worked out with the teacher he does some dancing in his wheelchair then some solo break dancing! Lol

Bron xx



#10 mamacantik

Posted 04 August 2011 - 08:59 PM

Yay to Deana for her awards and her general gorgeousness Rose :-).

And Bron, hope you're planning to video you concert. Can't wait to see Cooper's chair/breakdancing routine! What a little star he is ;-).



#11 Regular Show

Posted 04 August 2011 - 09:12 PM

Asher has heaps of friends at school to, it takes us ages to get to the car because everyone is hugging him lol.  I am really glad school holidays are over, they are an absolute nightmare for us with ashers sensory issues as he cant stand to be near our 4 year old DD at the moment  rolleyes.gif

We are going through a pretty rough time at the moment also.  Ash is going through the diagnosing process again as the pediatric neurologist we are seeing seems to think he may not have hypotonic cerebral palsy but instead a myopathy (muscle disease) or neuropathy or something else and CP.  sad.gif    I hate all the not knowing, its painful.  And to think we had answers and found support groups and people that understood and communities of other kids with brain injuries like ashys, and have had ash believing he has something he might not only to have something else that doesnt change a thing anyway and then to have the rug ripped out from under us like this is hard.
He is having a nerve conduction test in 4 days then we'll see from there.  I dont even want to think about cp it makes me want to cry - I dont feel like we belong anywhere anymore  cry1.gif

Caddy

#12 bumble bee

Posted 05 August 2011 - 08:39 AM

QUOTE (mamacantik @ 03/08/2011, 08:54 PM) <{POST_SNAPBACK}>
I hope that during this CP awareness week, all you lovely ladies are feeling well supported and appreciated for all that you do for your families AND also to say that I hope all your gorgeous kids are starring in their own way. As I've mentioned to friend on FB, I think best way to promote CP awareness of by looking at what our kids CAN do, now what they can't. So let's celebrate their amazing achievements.

Funny you should say 'feeling supported and appreciated' as I have been feeling very UNsupported and UNappreciated this week.  We have only been able to get 3 hours of day care in over 3 months.  I have asked for a new worker, even though I really like her, as she is just not available but keep being told there is no one else for us.  Also we went to a function/party for children with all sorts of different needs, it was all about the kids, carers were not allowed stuff.  I guess I wouldn't of felt bad if it had been promoted as a childrens' party but is was presented to me as an adult party that children could attend.  Selfish and petty I know.

Olivia is doing well (except for going to sleep at night rolleyes.gif ).  She wants to be involved with everything, especially if it has anything to do with a real animal.  I found a big toad in our yard, which I showed my kids, she wanted to touch it.  Every time my older girls find a dog to pat (they ask every one they see who has a dog) she wants to be gotten out her pram for a pat too.  
She seems to be trying to say some words.  They sound nothing like what she is trying to say but I am pleased with her efforts.  We got some Pedro sandals, which are great as she hates the AFOs.  Going to walker clinic next week.

Diana

#13 jaimmdee

Posted 06 August 2011 - 07:25 AM

Not sure I feel overly supported but I guess that's just my life.  I am looking forward to going to the races today for A Brighter Future's Race Day.

Marsh is going well though he still hates school.  I can now see why my friend Fiona used to tell me that it gets harder at school as the kid gets older.  This year, Marsh's friends have left him at lunchtime so they can play sport.

Marsh completed 5km "walkathon" (rollerthon) this week in order to raise $35 for the local disabled sport association.  And he got 7 out of 8 in his weekly spelling test.

#14 lindasjc

Posted 13 August 2011 - 12:00 PM

Hello All. CP has been added to my DD7's diagnosis, so I thought I might join you here if that is OK. Her primary diagnosis is Tuberous Sclerosis, but with her severity they are also classing her as CP. Hayley is peg fed, unable to walk or crawl, non verbal and has seizures and developmental delay.

Looking forward to reading all of your stories.

Linda

#15 Regular Show

Posted 10 September 2011 - 11:09 PM

Novita Walk With Me event at Bonython Park tomorrow 11th September 10am to 2pm in SA. original.gif

#16 Markerr

Posted 27 September 2011 - 09:24 AM

Quiet here these days...maybe its coz youre all missing me so much biggrin.gif

#17 Nomes74

Posted 17 December 2011 - 11:31 AM

Hey Girls


Just thought I would move us up the list its been a long while since I or anyone has posted on here.


Lots has chanced since I was on last.  Harvey has a baby sister and we have relocated to victoria.

Harvey is still not swallowing or sitting but still trying our best. As we have just moved, he's new therapists wont start til the new year but of course we do the daily things we need to.

Hope everyone has a great christmas and hope that we start using this forum a little more in the new year as I know it was the best place I found when I started this journey even though I am friends with some of you on Facebook.

xx

#18 mamacantik

Posted 24 May 2012 - 07:39 PM

It's been a long time since this thread has been active, so I am just bumping it up. For any families looking at possible CP diagnosis or with child with CP please pop in. We'll try to revive a bit of a support base x

#19 jojonbeanie

Posted 25 May 2012 - 11:41 AM

Very quiet.

Exciting times in our household learning to drive a power chair at special school. I am in no rush to move the chair to home and watch my walls becoming bumpers.

#20 TheSmithFamily

Posted 25 May 2012 - 04:58 PM

Thanks Di for bumping up this group after such a long time being out of action.

This group is where I started my cp support journey and it was a great resource for around 4 years for me.

i am more than happy to answer any questions in relation to CP and your journey.

I have a 7 year old son who has Athetoid cp , uses a truckload of equipment and is in grade one.

Wow Margie! i bet E is just loving his new vehicle!

Cheers
Bron

#21 archersmum

Posted 27 May 2012 - 11:14 PM

I'm not game enough to look into how long since I posted here wink.gif

Hello ladies!

Will be making an effort to come back and offer any support needed.

Feels good original.gif

#22 archersmum

Posted 27 May 2012 - 11:16 PM

My sig is telling me how long.  Goodness me original.gif

#23 TheSmithFamily

Posted 14 September 2012 - 08:23 AM

Just thought I would try and fire up this group again! Been a while since it was active but it was such a support to me in those early days.

Hoping to share some experiences and offer any advice or experiences if needed xx

My son is seven and has Athetoid Quad CP.  He received a brain injury at birth ( full term) and was diagnosed with cp at three days old. It has been a really long journey and still has its ups and downs of course. We live in Melbourne and we have two more children too.

In the early days we had weight feeding issues and Cooper used a haberman bottle after a NG tube. We added Polyjoule to his meals and he still requires extra calories in his food. He also used some meds for his saliva control last year which helped. Cooper sat around 2.5 and crawled at 3 and used a walker at 3. At seven he can pull up to stand and walk while holding onto a rail for a short distance.

After a short time we saw that mobilty was never the big issue but moreso communication and still this is his biggest hurdle.

Bron.

#24 ozbilby

Posted 14 September 2012 - 11:22 AM

Thanks for bringing this group up Bron.

My name is Sarah and my daughter Scarlett is one and was just recently diagnosed with Spastic diplegic cerebral palsy. She was born at 33 weeks with an infection which is believed to have caused the damage to her brain. Feeding has always been an issue and she has been NG tube fed since birth. Currently we working on learning to sit.

Look forward to meeting others  biggrin.gif

#25 Nomes74

Posted 16 September 2012 - 07:58 PM

Hey Sarah    
I'm Naomi and originally from Adelaide and have a 2 1/2 year old son called Harvey who has spastic Quad CP and severe Dysphagia.  Harvey was NG feed up until 3 months ago as he now has a Peg and hopefully getting a mic-key fitted next month. We moved to VIC last november for Harvey as we have found more to offer here than SA and it's proved to of been the right move for us.  Looking forward to getting to know you and Scarlett better.
I found this forum 2 years ago and have made the most wonderful friends who just get me and our CP journey.  I feel quite guilty sometimes of not checking this forum more often but promise to do so from now on.
Still miss you on FB Bron and will have to call you soon for a catch up









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