Hi all, new to the forum, just a bit about us.

[LeaciesMum]

Hi there, I'm always on the lookout for a good forum to share experiences and seek advice about CP. Our little girl Aleacia will be 4 in May, she has been given the diagnosis of spastic quadrapelgic cerebral palsy, level 4 (on the GMFCS). She is the youngest of 5 and because the others all had very early milestones I thought she must have been 'average' because of her delays. I didn't start to worry until she was 8mths old, as there is a family history of Spina Bifida I typed my biggest concern into a search engine, 'Stiff legs' and it came up over and over again with cerebral palsy. After reading several of these it all clicked into place, that's what she had.

We got straight into PT and the fantastic Royal Childrens Hospital here in Melbourne where an ultrasound of her brain came back normal, then so did an MRI. Then they thought maybe it was a genetic or metabolic disorder, so she was tested for almost every known disorder imaginable and they all came back clear too.

She is known as their mystery girl as although she is classed as CP they all say she isn't typical of CP. Leacie's arms and legs are high tone, her trunk is weak, her tone is dynamic and yet she is very bright for her age, her speech is perfect (she never shuts up) and she has no drooling or swallowing issues.

I thank the Lord Australia has such a wonderful healthcare system and the care we recieve at the RCH is outstanding. Her Orthopedic surgeon (Prof. Kerr Graham) is world reknown and was a pioneer in the study of and using botox in Australia. Honestly it breaks my heart when I read in some forums the trials the parents in some other countries go through getting help for their children.

So where we're at now is, our early intervention team Scope come to our home every fortnight to do OT and PT, she does hydrotherapy twice a month and will be starting hippotherapy (riding for the disabled) before long. Aleacia has a David Hart Walker and is making fantastic gains in that, we will be picking up her Pink Panther wheelchair any day now, as well as her Flamingo bath chair . . . YAY!!! I am SO looking forward to being able to wash her hair on my own (not need hubby to help).

Oh and one last thing, I have hyperactive fingers and I LOVE to chat (type), lol. I hope to get to know some of you.

[admin]

Hi LeaciesMum,
Glad to see some new faces around here! Thank you for all the contributions to the site. Things have been a little slow to start since I brought the site up but it has been getting a lot more activity in the past couple months. Always looking for people to help answer questions and give advice. Feel free to contact me anytime with suggestions, comments or anything I can do to improve the forum.

-Mike
CerebralPalsyForum.net Admin

[Bennysmom]

Hi there,

Your daughter sounds very similar to our son. He also has spastic Quadriplegia. He is tight in all four limbs and week in his trunk. He has only just turned one.

His only difference is that he has not started speaking at all, he does not know his own name, I question his mental abilities but they can't test him till he is 2.

I am told he will be between a 4 or a 5 but that testing also cannot be done until he is two.

[LeaciesMum]

Hi Mike and thanks for the welcome. I'm sure it must be hard getting a site up and running and well used, but as the show say's, "Build it and they will come", lol. What was good is the fact you were up there at the top of the google list. Hope you stay there.

One suggestion for your forum . . . avatars (if that's possible), I've found without them a place can seem so impersonal. I like to have a pic of my special little girl so people can see she's more than just someone I talk about, she has a face. If you know what I mean. But hey if that's not possible that's fine. I'm pretty impressed with your site as it is. Great work.

Hi Bennysmom, how long since you've had a diagnosis for your son? I know I was still pretty numb when Leacie was his age. I had one doctor telling me it's only mild, best case senario she'll have a limp, worst case senario she'll need an aid to walk. I've got to the point where I no longer mourn what she can't do but celebrate what she can, but I still have times when I see kids her own age where my heart aches.

Was Benny a prem? Is he an only child? I know a couple of families with CP kids where the older sibling does the talking for their little one so the little one doesn't really bother trying. Is he learning sign's? I can't begin to imagine how hard it is without verbal communication, especially when they are in pain or hungry/thirsty.

I look forward to hearing from you again and learning more about Benny.

Regards

Leanne

[Bennysmom]

Hello Again,

Good to get a reply.

Ben was diagnosed at 5 months of age after his father and I saw many doctors complaining of Ben lagging behind developmentally and being told he will catch up. Once we got to 5 months and they saw how far behind he really was people started listening to us. We started physio therapy then and that has helped leaps and bounds with his head control. I hope one day he will learn to sit on his own.

Ben was not a premie he was actually late, He weighed 8lbs 8oz He had an apgar score of 9 both times and I was sent home the day after having him. I had no reason to suspect any proplems at first. Ben always had a stridor though. At first they told me his loud breathing was because he swallowed amniotic fluid but we learned later it was larango malasia (spelling incorrect) It has also gotten better with time.

Ben is an only child but we hope that wont be for long. We would love for him to have a sibiling.

We have not been teaching him sign language as Ben also has vision problems so we aren't sure if he can see us very well plus he does not have very good control of his hands and since he does not understand his name I am still not sure how much he comprihends. None of Ben's experts have suggested it yet.

Tell me more about your daughter and her story.

[LeaciesMum]

Hi again to you too. Thanks for sharing Ben's story, I think that's the hardest part, the waiting. For everything. Sometimes I wish I could have a crystal ball and see just what lays ahead of us, but then when I do start thinking too much about the future I start panicing and have to bring myself back to taking each day as it comes.

You know it's funny, Ben's and Aleacia's birth's sound very similar, she was 12 days overdue, she was 8lb 11oz, her apgar scores were 9 and 9. There was meconium in her liquor but we don't believe she swallowed any. Her birth was normal except for really quick, but then I have quick labours. The whole labour was an hour, second stage was only 5mins, but all seemed fine. The only thing that was out of the ordinary was that both she and I had mild temperatures but no sign of infection. This didn't surprise me actually because right through my winter pregnancy I was hot, I couldn't wear a jumper at all or I'd overheat. Even now Leacie is a hot bod, always sweaty and she doesn't cope at all in the heat. On the rare occassion she get's ill and gets a temperature as soon as it reaches 38 deg C she almost shuts down, she goes all limp and looks like she's wavering in and out of consciousness.

No one suspected there was anything wrong for the first few months, as I said before my other kids all had early milestones, sitting at 5mths, crawling at 6mths, walking at 9mths, my youngest son took his first solo steps at 7mths so I just thought Leacie was 'average' or taking her time when she still needed to be propped up while sitting at 6mths. The thing that got me concerned was I couldn't bicycle her legs when playing, they were just too stiff, then I noticed she always kept her hands fisted. I brought these concerns up with the Maternal Child Health Nurse and she didn't see a problem. I went home and typed 'stiff legs' into a search engine and CP came up over and over, I knew that was what it was when I read the other symptoms. So when the GP also said she thought it was CP it didn't come as a surprise but it was still a shock if you know what I mean.

I got really depressed and wasn't coping for a few days until my darling husband said to me, 'It's a life sentence, not a death sentence. We will cope and so will she.' The one line put everything into perspective for me and certainly snapped me out of the depression. Also so did the poem called 'Welcome to Holland', I don't know if you've read it, but if you haven't, do. It really makes you see life isn't bad with a disabled child, it's just different.

Anyway I've babbled on long enough for now (I tend to do that) I wish you luck with your trying to conceive. I'd love to hear more about Ben and what sort of care he gets where you are. I'm in Melbourne, Australia, where abouts are you?

Hope to chat again soon.

Leanne

[Bennysmom]

We are in Ontario Canada,

I was also in a huge state of depression at first and I have read the poem Welcome to Holland. I work in a cubicle and have it posted in my desk surrounded by photos of Ben.

What really helped me was my husband explaining Ben doesn't know any different and he really is a happy boy. You are not feeling sorry for Ben you are feeling sorry for yourself. Ben is happy and loved and cared for and he will not miss the things he does not know.

Benjamin does physio, occupational and speech therapy. He sees a pediatrician and an optamoligist. His strengths are his hearing is perfect and he got his teeth early. The only thing Ben ever got early was his teeth.

We are saving up money right now to take him to Germany to the x-cell center for stem cells. After lots of research I really think it could help him but we have to wait till he is 3 years old and 35 pounds so we have some time to save up.

I can bicycle Benjamins legs but he stiffins when he gets excited and he is very fisted when excited aswell. He will relax when he is just hanging out or sleeping and then all his limbs finally relax.

He eats A LOT but has a hard time gaining weight. He has never lost weight but getting him to put it on has been slow. He is almost 14 months old and weighs a little over 20 pounds. He is like very low average but it takes a lot of food to keep him average.

[LeaciesMum]

Hi again, sorry for taking so long to reply, life has been a bit hectic here in the last few days. Your hubby sounds like a very wise man too, he's so right.

It's great that Ben has perfect hearing, there'll be no sneaking around with him about, lol. I also had a giggle at how you said his teeth were the only thing he got early. Poor Leacie was gummy until she was one, her first tooth didn't make it's appearance until she was almost 13mths old.

I'm interest to learn more about this stem cell thing you talk of, I've heard about it before but never looked into it. So sad you have to go all the way to Germany to get it done. I hope it does everything you expect of it. Good luck with him reaching 35pounds by age 3. Leacie is like Ben in that way too, she can eat and eat and hardly ever gains weight. The physio said it's because her muscles are tensing all the time burning energy. She's gone from the 95th percentile when she was born down to just under the 5th percentile now. She'll be 4 in May and weighs 13.3kg (29.3lb) and she's only 93cm (36.6in) tall.

Do you get to interact with other families with CP kids? I know when Leacie was first diagnosed I didn't want to meet others, but now I'm so happy to meet and get to know others. I love to share their triumphs and tribulations, but still it's hard to find them or get time to get together. The Lion's club who funded Aleacia's Hart walker is having a big picnic, walk-a-thon day next month. It'll be the first time I'll get to see other kids in their Hart walkers, they're even having Hart walker races in good fun. I'm looking forward to that.

Anyway, time to bathe the little monsters opps I mean darlings I hope to talk to you again soon. My name is Leanne by the way.

[Bennysmom]

My name is Hayley.

I don't know what a hart walker is. I'll have to research that. We have yet to meet another child with CP. There is 2 20 somethings at the place I work who have it. I end up staring at them like they are going to show me Ben's future but really they are much different then Ben.

There is a teenager in our town with CP who is always in the paper because he raised money for an inclusive playground with special swings, brail on the equipment and a special rubber area on the ground instead of pavement or gravel for when children fall. I cut out all his artricles. I have his mothers email address but I have been to shy to email her as I don't really have any questions other then tell me what it was like as he grew up.

One of our early intervention works said they are trying to get together a meet and greet for the families but she hasnt gotten back to us yet so I think its not arranged yet. And then there is an anual CP of ontario convention every year in October. But we only found out about Ben's CP last September and weren't ready for that yet. I hope to attend this year though.

If you want to research the stem cells its a website called X-cell center. It costs a lot but were hoping. The younger your child is the better it works. Its only about 60 percent that have improvements but thats better then nothing so we want to take the chance for Ben. You do need to weigh 30 pounds though but it sounds like your little girl is just about there. We have read a lot about it. I took all the information I found to my doctor. He seemed to think the procedure they use to take out the bone marrow is already in use for a different procedure. The lumbar puncture is already in use for a different procedure. All they are doing is combining the two and seeing some results. He said the worst side effect for Ben would be the pain of the procedure and his parents spending a lot of money for no benift if Ben is one of the 40 percent it doesn't work for. We are willing to take that risk.

It is a shame that we have to go to Germany but they do not do it here in Canada or in the USA. It's not approved so holiday in Germany sounds fun to us in a most of the time spent in the hospital kind of way haha

I was also told the same as you why Ben cannot gain weight. He has also dropped down on the charts. I try very hard every month to feed him up and make him big and strong but its hard since he doesn't understand chewing and is still doing purees and formula. I was going to switch him to milk by now but my doctor thinks the longer he's on formula the more nutrition he's getting that he might miss on just purees.

Anyways I am going to go google a Hart walker.

[LeaciesMum]

Hi again Hayley, I've just been looking into the stem cell therapy and oh boy I am impressed with the results. What amazing turn arounds with some of these kids, simply a miracle. I will be asking my paediatrician if there is anything like that available here in Oz. Did you bank Ben's cord blood when he was born? It's funny, my hubby and I were seriously thinking about doing it when we had Aleacia but decided at the last minute not to. I regret that decision now. It will be interesting to see just what sort of response rate there is further down the track in regards to this therapy. I imagine there will be varying end results, but I suppose any improvement is cause for celebration. I really look forward to finding out how Ben goes. 'Common little man, eat more, eat more, get heavier', lol.

The young man who's in your local paper sounds like a real inspiration. I know of a family here that do some major fund raising, what started out as a simple fund raiser for equipment for their daughter has become a huge yearly event. It's a special 'Golf day', and they raise up to 30 thousand dollars with it now. They donate most of it to Scope, their early intervention team.

Scope last year had 'meet and greet days for us too, I used to really enjoy them. Share ups and downs, laugh and cry, it was really good. The group moderator if you could call her that was a child psychologist so she could help answer any questions we had too. They've not done these yet this year which is disappointing, I'll have to see why not.

I'm also a bit disappointed they've put off our final fitting for Leacie's wheelchair for another week (2 weeks away now) due to not being able to arrange compatable appointments between the suppliers and the physiotherapist. It's not really the wheelchair I'm hanging out for, it's the Flamingo shower chair that we're also getting at the same time. Leacie may only be a lightweight but oh man it's hard to shower her to wash her hair (it's really long). It's a 2 person job and the one outside the shower cubicle ends up just as wet as the ones inside, lol. I bet these two weeks are going to drag by, lol.

I hope you and your family are doing well. I look forward to talking to you again. Take care.

Leanne )

[Bennysmom]

Well I got my first angry moment this weekend about Benjamin to my friend.

We have these friends we have known since we were just dating. They still are dating, still haven't gotten married, no children. And the girl in the relationship is really dumb sometimes.

Anyways she was again explaining to me that Ben will walk if I just work hard enough with him, Which we have heard from all friends and family and no one seems to want to face the truth that if Ben walks with a walker I would be over the moon but most likely it will be a wheelchair and I'm okay with that. It's not that I'm giving up on Ben it's just I need to accept reality in order to heal from the pain of the dream of the baby I thought I was going to have. If he does end up walking I will be so happy but I need to stay in reality.

Anyways I was trying to explain to her that Ben was a lot like that teenager in the paper who raised money for the disabled childrens play ground. As that boy also cannot walk and everyone in our small town knows what he looks like.

Well then my friend informs me that it was a stupid waste of money making that park and her brother gets in trouble for skateboarding around town and they could have used it to make a skateboard park. I mean how many disabled kids are there anyways? I know you guys have one but thats just one.

Now this park is 25 minutes away from our house so I get very upset and fire back...FOR BEN TO EVEN PLAY ON A SWING I HAVE TO DRIVE HIM 25 MINUTES AWAY WHEN THERE IS A PARK RIGHT HERE 5 MINUTES DOWN THE STREET. PLUS IT IS NOT JUST FOR DISABLED CHILDREN THERE IS 3 NORMAL SWINGS AND 1 DISABLED SWING. THERE IS BRIAL ON THE DIFFERENT PLACES SO CHILDREN WHO CANNOT SEE KNOW WHERE THEY ARE AND THE WHOLE THING HAS A GROUND MADE OF SPECIAL RUBBER INSTEAD OF GRAVEL SO THAT IF THEY FALL BECAUSE THEY CAN'T WALK WELL THEN THEY DON'T GET HURT

She responds back with well how are they supposed to slide? Disabled kids can't use a slide.

so I say THE SAME WAY YOU DO. THEY SIT DOWN AND AWAY THEY GO! PLUS THAT BOY RAISED MONEY FOR THAT PARK. IF YOUR BROTHER WANTS A SKATEBOARD PARK SO BAD MAYBE HE SHOULD GET OFF HIS ASS AND TRY AND RAISE MONEY FOR THAT THEN

Gosh I was so angry. I felt like she was saying because there aren't as many kids like Ben that the ones like Ben didn't deserve a place to play. I felt just so totally mad.

Anyways I looked up your hart walker. It looks very intereseting. Ben is to small for one now but maybe in the future. It's nice having someone to write to.

[LeaciesMum]

Hi there Hayley, nice vent. My jaw just dropped as I was reading it, OMG how can some people be so stupid and closeminded? Yep like you we've had the friends and family that in the begining thought that Leacie would learn to walk, that she would get better. It's sort of sad really watching reality dawn on them when they see that there are only minor motor skill improvements (in their view, in mine they are HUGE improvements) and when they see her in her walker, and when they hear that her wheelchair is on order. But that's ok, I accept that, but if one of them were to voice their opinion like your friend I'd have blown my stack too.

It sucks that you have to travel so far for this park, but it is wonderful that someone so dedicated saw the need for it and did something about it. Yay to that boy, what a legend. You're right, her skateboarding brother can at least go out the front of his home and 'skateboard', yes a park would be nice but as you said, if he want's one so bad let him fund raise to get one. I LOVED your response about the slide. Good comeback even though I imagine you were about to blow your stack by this stage.

As for there only being a few kids with disabilities I bet there are a whole lot more than she realises. I don't know about you, but since we had Leacie we've really had our eyes open and it almost seems everywhere we look there are both children and adults with disabilities, just in the past we'd never 'seen' them.

I don't know about your friends but we found one of ours even stopped visiting when Aleacia got her diagnosis. I don't know if it's because she feels uncomfortable around Aleacia or if she feels guilty because her child (a few months older) is 'normal' or what. But to be honest, if that's the way she feels then it's her loss. I know since having Leacie I've learnt to talk to kids with disabilities more and not feel sorry for them like I did in the past.

Anyway I could type all day, I'll save some for next time, lol. Yes it is nice to have someone to write to, I appreciate you sharing with me.

Leanne

[Bennysmom]

Yes I was very upset but I am getting over it. She's not the smartest person. Even if she did feel that way why tell the 1 person she knows with a disabled child.

I have also found since finding out about Benjamin we have seen so many more people and children with disabilites then before. Like when I was pregnant I suddenly noticed so many more bellys and strollers then before....speaking of which we did it. We are pregnant again We are very excited but it's early days as I am not due till November 23rd. I know I didn't cause this in Ben but I still will be extra careful with baby number 2

We have also found that our friends avoided us more now. Most of our friends aren't married though so we found that even just getting married too. What really hurts me is when people ask if he has started walking since hes 14 months and I say no but he has cerebral palsy so it's different for him they always say oh I am so sorry...which is just a general reaction I know and I know they mean no harm but they say it like I just said my child is dying.

I also feel a bit down because when I told my parenst we are pregnant they are worried I will be to overworked with Ben and Ben needs our total attention. We know it will be more work but I don't think its fair that because Ben has CP people think he shouldn't have a sibiling. I know they will come around once the baby is born. They worried that we were to young when we were pregnant with Ben too and then we had him and now they are overjoyed with him.

How are things with your daughter going? Did you get your new wheelchair yet? Anything else knew?

[LeaciesMum]

Hi Hayley, sorry I haven't been replied for so long. Life has been a bit hectic around here with Easter and therapy and getting Leacie's new wheelchair etc.

FANTASTIC news, CONGRATULATIONS!!! I am so pleased for your pregnacy, how exciting! I can understand your parents being worried about the extra workload, but I found with each child you adapt. Yes at first it's a bit tough but you get used to it and get yourself into a routine before you know it. You'll cope fine. I think Ben will LOVE having a new baby around.

Yes we got the new wheelchair and the shower chair YAY!! I could FINALLY wash Aleacia's hair. What I'm really impressed with is that even the physio didn't think Aleacia would be strong enough to self propel the wheelchair for quite a while yet but the little princess proved us all wrong. I showed her once how to do it and do the turns and she picked it up straight away. She may be slow, but she can do it.

I'm not sure if I'm allowed to post links to Facebook on here, but here's one if you're interested. I took this footage of her only minutes after she first started to wheel the chair herself.

http://www.youtube.com/watch?v=-jYmlmoR0mc

If the link doesn't work then try typing (without the quotation marks), 'Leacie (3) masters her wheelchair' into the facebook search engine.

Anyway, I'm avoiding housework so I suppose I'd best get back to it. Take care, I hope you don't get too much morning sickness. Talk again soon.

Leanne

[Bennysmom]

I haven't had a chance to look at your link because I look at the forum at work and I cant go to facebook or youtube but I will look tonight when I go home.

Thats great about finally getting her new wheelchair. I look forward to watching the video. One thing I always think of is will Ben understand how to push his chair.

My physio thinks Ben isn't progressing as she would like since he's been in daycare. I have decided to take Mat leave as early as possible so I can spend some real time doing his exercises with him again like I used to before I went back to work. I am leaving on June 18th. I can't wait. 5 months before the new baby to spend just me and Ben. I hope to help him with his rolling and with putting weight into his arms for his sitting. But his neck strength really has gotten much better.

My husband is an architect technition. He has been drawing up plans to build Ben his own special playground when he's older. But that will be once we win the millions haha. I cant wait to take Ben to the one they built this summer.

Anyways nothing really new hear. I'll look at your link later on tonight bye bye