i dint wanna say this out loud properly yet. ben needs surgery, he has Craniosynostosis. we will know the full extent of the fusion after the CT scan, they were gonna do an mri but would prefer to hold off on that just yet. this needs investigated first, its a priority. well any ways, his fontanell is fully closed and so are 3 of the 4 sutures of his skull. they aint sure if the one on the left is open or if its just the way his heads growing.... its causing motor skill problems, especially his hips. he has no controll or movement of them. the brain pressure is why they think he is having his trances. the trances they thought coulda been seizure of some sort, but its not, his egg is clear. he has also started showing signs of failure to thrive. dropped down the centiles. he has only put on 1lb in 8 weeks. to look at he is my perfect little baby,. but when u see what he cant do it pees me off. thats all the pediatrics/physio/consultant focus on. what about what he can do??

any way. i got a bit up set about it, the surgery. then i got made to feel like it was no big deal cause my sisters child has went thru a similar surgery. this is the biggest reason i am shitting my self! i seen how she coped for a start. i seen the state of the wean after the surgery. she has a very blooming short memory. i clearly remember the compilcations of my nieces surgery. and her recovery, infections etc... she was 2 and a half. he is only 20 weeks... theres a big difference. im crapping my pants as it is and i cant talk to my family about it or im made to feel like its no big deal, ur sister did it first.

it is the same idea, the surgery. but for 2 very different reasons. why cant i be allowed to show my feeling over it. talk bout it. i know it happened to her!!! but right now its happening my my wee guy and i wanna take all that away from him. he is too wee, he shouldnt need to go thru this.

its like it dont matter!!

the other moan is... the mil came to collect alasdair today and she never even asked after ben, he was sat in his chair beside me, whilst i put on alasdairs hat and jacket etc.. she never even said hello to him!! got to me big time. so it turns out.. she is having trouble dealling with having a child with a disability in the family :@ not cause she is worried for him but cause she has to explain to her friends and it make her uncomfortable!!!!!!!!!!!


ok. i could put a weeks worth of moans on here, iv tried to stay away cause iv had nothing nice or supporting to say recently. been stuck in the pity party area for a spell.... im gonna hit send and hopefully ill feel better!!

sorry for the essay x

I dont really know what to say hun as i dont know much about the procedure but just to say we are all here for you and will be with you throughout this. Xxx

i don't know what to say regarding Ben's procedure but it's totally understandable why you're so worried.

I would be furious with your MIL, Ben's a lovely little boy, she can't pick and choose her grandchildren.

and finally don't stay away and bottle things up that's what the BANDA ladies are here for. x

God, laura I don't know what to say either! I've met ben (at the meet) and he's such a lovely little chap, I m just sorry that I didn't know anything about his disabilty.

You're going to get all the support you need here but I do hope things improve with your family as I think you need a real person to support you and for you to yell at etc if need be.

Is your oh supportive?

Hugs
x

Aww, Laura..I really didn't realise you we're going through all this, we are all here for you hun..just a shame its only virtual..but we're always her to lend and ear.

I can only imagine what you are going through. Its really not fair of your family to be like that about Ben Have you said that there is a big difference in age and you are entitled to worry about your son and would appreciate the love and support that was offered to your sister when she was going through it.

And grhh!! at your MIL, thats just nasty..not to acknowledge her own grandson He's only a wee baby

Remember we are always her for you..huggles

the oh sticks his head in the sand. he lets me deal with all his care, appointments etc. i do it all my self!

aww laura im so sorry, i hope everything goes well with bens scans and the surgery im sure it will but honestly i cant even begin to imagine what ur going thru
and as for ur mil im sorry but she is a moron!! that is feckin ridiculous how dare she say that she doesnt know how to cope bcos she will have to tell ppl she has a disabled grandson!! thats really made me mad

Laura, it sounds like you have a huge heap of crap to deal with there.
I don't think you need telling - screw the MIL Whatever issues she has, they are hers - no one elses. If she isn't accepting of little man then she needs to be told straight where to get off.

As for being able to vent your feelings - too bloody right - I can't say I speak from any kind of experience but I would have thought that any kind of bottling it up or biting your tongue won't help. Tell anyone who has a go or tries to belittle your emotions exactly how it is, nice and brief and to put them in their place. This is your baby and noone will ever know exactly what you're going through - empathy is great but how dare they presume and tell you how to feel!!

And the wee man himself well, like you say, he's a little trooper - I only hope that the medical 'professionals' are dwelling on things that seem negative because they want the best - and will give the best - kind of treatment.

I really hope all goes well and that all his proceedues etc. go as smoothly as possible. You're stronger than you know - hope venting it has helped some xxx

I'm so sorrythis is happening to you and Ben, come heread rant away all oyu need were all more than willing to listen

Your mil needs to take her head out of the sand Ben is her grandson regardless of what disability he has, massive hugs hun xxxxxx

aww hun

poor iikle ben! im sure he will be okay though in the end. i dont know any one who has had to have that kinda op, but i have heard of it before. n i did look it up when you said about it.

as for ur mil.. what a cow.. sorry but so what if he has to have the op? she should be greatful for that fact she has lovely grandchildren.

hope ur okie n know that we are all here for you xx

i now have a new consultant who took the time to do some research on noonans and she has been brilliant so far, so are the physios.

the mil can go jump, she got told to not so politly to stop pushing at me this morning. she wasnt best pleased cause she moaned at the oh.. fook her. they have seen ben, bout 8 or 9 times. says it all!

he is a happy wee soul, he keeps me strong. i know he has nothing life threatening, its just this is the 1st surgery of a few he is gonna need. just wish it wasnt such a big one first!

i do feel better now, now iv said it out loud. x

Im glad you feel better you have been holding it in far too long now!
Your mil is a total cow and not worth bothering about. Id tell her she cant see alasdair either if thats how she feels about ben.
I dont know what to say about your family but its a pretty appaling attitude to have. when your sister was going through it technically they could have said a million other babies have went through it so it doesnt matter.

It sounds like your coping well im so proud of you id fall apart
x

glad you feel better hun, and you have every right to feel how you feel, yes your sister went through it, but this is you and your baby who is a lot younger.

i'd say you must have pushed the docs alot to get a diagnosis so quick. rich had an operation on his stomach at 3 weeks old and it was the scariest thing i've ever been through and i'm glad i had my mom, hope you have someone who will be there for you.

as for the MIL i have one like that, she missed rich's birthday and as told her friends hes backwards...she never says things like that in front of russ mainly because she knows what he would say. so sending a pain in the ass mil hug, they very special and reserved for us special few

awwww Laura im sorry that you're going through this - poor Ben, i bet your heart is breaking. what a cowbag your MIL is for ignoring him - whats her problem?? We are always here for you. you carry on and have a moan, thats what we're here for, to share the good and the bad xx

Awww Laura Big (((((((((Hugs)))))))))), don't stay away, come on here and get things off your chest, we are all hear for you.

Having met Ben the other week, he is the most gorgeous little boy and no wonder you are worried sick.

Take care honey xx

Oh hun, I had seen that poor little Ben needed surgery but I didn't know to what extent

I'm so sorry that you feel alone in this and especially your MIL's attitude

Huge massive hugs for you hun xxx

Aw laura, your MIL needs to shake her head, what a shite attitude she has!

he is a gorgeous little boy and i hope he everything goes well for him, its not right on your family to belittle your worries i wish they could be a little more understanding, they should be really considering they have had to go through it before, it should make them more sympathetic!

as the others have said, we are all here for you when you need us hun xxxx

ah hun, am so sorry it's so much worse for Ben than anticipated...will his surgery make a big difference to his development/motor skills etc??

i won't pretend to know how you're feeling but you know where i am if you need anything at all.

your family needs a slap, you need support, not to have your feelings shut out like they don't matter!!!

as for the MIL....grrrrrr don't get me started!!!!

big hugs xxx

I can only agree with what all the other lovelies say - we are here shout, scream or cry.. someone will always be here to listen (read) to you...
Ben is a beautiful wee man and whatever get thrown at you by evil mil throw it right back

Hugs hun xxx

Huge hugs Laura

Youre completely normal to feel so worried about Ben needing an op, and just because your family have been through this before doesnt mean you dont need some support or just a shoulder to cry on!! It makes me mad inside!

Im glad you have a consultant who is now giving the proper care to him hun.

Grrrrr at the MIL......hes still her grandson!!! The owd witch

xxx

Just wanted to echo what the other girl have already said. I cant imagine going through that, i think you are so strong. Big hugs

Everybody seems to have said everything i was going to hon but *hugs*

Your MIL needs a slap, Ben is beautiful and who knows what kind of little boy he is going to be in the future but im sure you will be very proud of him. She should be proudly showing him off not hiding.

As for the surgery your sis should know better and be more of a support to you. Time does dilute memory and maybe in her head she has lessened the impact it had on her life rather than relive scary memories but like you say she has seen it through and of everyone in the world is the one who should be able to hug you and be there for you.

Dont stay away from us on Banda we all adore you and your wee family and want to be here to support you all the way through xxx

thanks peoples. made me feel a bit better bout it. im a worry person, everything feels a huge masive deal to me till i calm down and rationalise my thoughts.... i have the ability to let my head run away with its self lol!!

kenty, it will make a great impact on his motor skills, for the better. his wee brain has no room to grow, thats why the fluid has increased and his head is a really weird shape. if u look at the shape side on u can see his brow has a sort of over hang. i thought the back of his head was a funny shape cause he will only lay to the right, he cant go to the left him self, hes gettin physio to help with that. same with his whole left side. he has no control over it, like waving about etc... where most babies can flail around with both arms and legs, he can only do it with his right side. he also has no hip control. he screws his whold top half right round to the right, yet his legs and hips stay put. he does have strength in his legs thou.

it dont help that my sister have babies days and a week apart from ben, who are making all the giggle noises, can sit nice and sturdy, are chewing the hands, grabbing at things, can follow objects, have eye control etc, the basics. sometimes it gets to me, he cant do the small things and i let my head get away from me and wonder just what his future does hold... not that it makes a blind bit of difference. im just looking too far ahead, to nursery age, school, bullies, learning abilities.. i know i shouldnt. i just wanna protect him from every one. ppl like the mil make me even more fiercly protective.

it dont bother him thou, hell still give u a big gummy smile lol!!

Laura

Its houldn't matter that your sister's daughter had similiar surgery to Ben first that doesn't make it any easier for you to deal with. They should be even more supportive off you having seen what your sis's little one had to go through. Your family may not be there for support hun but we are. Talking to you earlier really helped me, you are such an amazing lady who has had so much to content with yet is always there with a word of advice/support.

As for you MIL people like this get on my tits, Ben's condition shouldn't matter he is her grandson and she should be proud to call him that. Sadly ignorance doesn't have a cure.

Thinking of you hun xx

u know she has a grandmas bragging book. when alasdair was born one of her friends made her it, starting off with a few photos of her with alasdair as a tiny. shes filled it with alasdairs photos, its one of them books u take round and show people. i dunno there them kinda people who do stuff like that.... when the lunch ladies come, it comes out, if the visit people or relatives, it comes out.. u know the kinda book i mean??

what bout ben. its starting to grate on me...