Popping in to say hi and a little intro

[Emmea12uk]

Entirely agree with emma! His head does look mildly sb, not particularly hydro though, but the sb look can be seen in many a normal child. If he had hydro and needed emergency treatment, he would get very ill, so don't panic about, just watch the younger one for it.

I spoke to a neuro senior nurse about you and she advised me to tell you to go to see a consultant privately, as it would only cost his hourly fee and he could refer you to the nhs for tests etc much quicker. If there was a diagnosis he would help you legally, instead ofsweeping it under the carpet. Up to you, but if you get stuck!

She also said it is highly unlikely to have been missed, but that you should know if they have looked at it and that if they havemissed it, it is negligent beyond belief!

Good luck and let us know how it all goes!

 

[dippy dee]

Thankyou so much girls.
Emma thankyou for speaking to the neuro nurse for me it means alot, they never have looked at him for anything apart from gluten and milk allergies and an xray to see if he was constipated other than that he has just been shoved on meds and that's it
I have spoke to dh about going private as the nurse suggested it and he said they have 2 weeks to see him or we will go private, atm he has no infections in the wee department so i am trying to look at like you girls have said, he has been like this for 3 years and other than his poo's and constantly falling and bumping he is a typical lad.
Here are some new pics as you can see him better here and yes i am a worrier but hey ho i am a mummy.

 

[Emmea12uk]

He is one cute kid! I don't think his head looks particularly SB, but it could be! Keep us posted wont you!

 

[Emmea12uk]

How are things?

 

[dippy dee]

updated on pg 1 thankyou ladies xxx

 

[Emmea12uk]

I am so pleased you have finally got a result! This means that after all this testing there may be light at the end of the tunnel for some of their problems.

Are you considering legal action?

Please feel free to come over to my forum for families affected by SB or my facebook group. Both are linked on www.sbhp.org.uk. There are many many other mums who can offer you support or advice there. It will be great to have you there.

 

[Tegans Mama]

I agree, you should take legal action. The way you have been treated sucks. I'm sorry you got the diagnosis of SB but I'm glad you got a result.

 

[dippy dee]

Thankyou ladies, we are just awaiting Jacks other bits and bobs and then we will consider legal action, we are already taking action against the hospital from when Jack was born, they failed to diagnose cronic lung disease and a hols in the heart and a pda so the day after he came home i had to resusitate him and he spent 4 months in hospital until they realised everything that was wrong with him so after we get results these will be added onto the long list of things our solicitors etc are fighting for us.
We have been told that it is highly unlikely that Harley will sit up or have full use of his lower limbs and that they will keep an eye on the weakness in the right side of his body although he can use his right hand it is very weak and clumsy in movement etc, as for the rest we have been told to wait and see basically, but i got my answer as to why when my 3yo ds stood on his foot by accident that it didn't bother him in my mind.
Jack has more tests to be done regarding his bowels as things are getting worse despite tho sodium picosulphate and the movicol, there are talks of bags etc so we will have to wait and see but for now my lil man remains in pain when needing a poo.

My mind feels like it is blank but so full iykwim i am doing my day to day things trying not to think of it but then i do and i'm crying, that may sound a bit drematic to you but my lil man is not the lil man i had if that makes any sense, i see other babies his age sitting and learning to crawl and walk and i have to face the fact that my baby may never not do these things. The future i have for my baby may need a bit of modifying but i'm damned if he will let anything stop him lol he is using his arms to pull himself around comando crawling and he is starting to babble like a star.
Sorry just a proud mummy moment through eyes that are full tears.
Thankyou ladies for helping me i couldn't of done this without you xx

 

[Emmylou27]

, nothing else, just

 

[sam*~*louize]

aww ive kept an eye on this thread. Im glad you got some answers donna, he's a happy lil star, was when we met him and despite difficulties he may encounter, he's still going to be your lil star!!

 

[Emmea12uk]

I know just how you feel, but I was prepared unlike you. Massive hugs.you have been through so much. I hope your children get the hope they need now. I am alwas here if you need a chat

 

[dippy dee]

Thankyou Emma i may take you up on that chat one day as i feel the thoughts, worries etc in my head are causing stress that is just rising and i need to get it out dh refuses to talk about it so it is just me and my thoughts, it is putting a stress on our marraige so is just what i don't need.
But on a good note my lil man has a new trick, he has learnt to sit up i am so happy as the consultants said it was one of them unklnown things that they just had to give us worst case scinario and if he did then it would be brill, well he did it so i am so proud of my lil man x

 

[Emmylou27]

Wow go Harley - that's fantastic news! Welcome to the world of proving the doctors wrong - our little ones are so strong and clever! x

 

[Emmea12uk]

Talk to me anytime! I know what you mean about the stress building up - as with everything stressful, it puts a strain on your relationship and refusing to talk about it will only make this worse! Why is he doing that? I suggest you go to someone to talk, like relate. They were a massive help for us. They just seemed to know how to make us talk to each other and listen.

I am finding it hard to believe that you have been given worse case scenarios at thus stage!!! You really have a truely appaulling hospital!! Have either of them had MRIs yet?

Well done to harley for sitting!!

 

[Emmea12uk]

What sort of problems does harley have now? Do you have an idea of what he can feel/ move or any weaknesses?

Has he had any urodynamic testing for all his uti's yet?

So sorry you are having to go through this. It does get much easier xxxx

 

[dippy dee]

What sort of problems does harley have now? Do you have an idea of what he can feel/ move or any weaknesses?

Has he had any urodynamic testing for all his uti's yet?

So sorry you are having to go through this. It does get much easier xxxx

We have had an MRI and he is waiting for a ct scan of his head, he has not had the one to measure his urine etc but there is talks of this happening soon.
His right side is very weak he can sit up now but only for a brief second then falls, always to the right, he doesn't weight bear on his right foot and he can pick up with his right hand but only with a claw like grip.
As for feelings we don't know yet.

 

[dippy dee]

Talk to me anytime! I know what you mean about the stress building up - as with everything stressful, it puts a strain on your relationship and refusing to talk about it will only make this worse! Why is he doing that? I suggest you go to someone to talk, like relate. They were a massive help for us. They just seemed to know how to make us talk to each other and listen.

I am finding it hard to believe that you have been given worse case scenarios at thus stage!!! You really have a truely appaulling hospital!! Have either of them had MRIs yet?

Well done to harley for sitting!!

Thankyou for the advise
It was our peadiatrician consultant who gave us worst case rubbish and he was so matter of fact and horrid to talk to but we have spoken to some other peopke there now and they were lovely.

 

[Emmea12uk]

Seems like things are finally getting sorted! All the best! X I am always here if you need to chat