Daisy update

[Emmylou27]

Hi ladies

Sorry haven't been in here much recently or replied to your messages - we've just moved house and it's taken nearly a month to get a broadband connection sorted!

Anyways, our little girl is doing so, so well. She had an MRI at the end of May to confirm the shunt situation and we found out today that she isn't going to need one Obviously we're still to contact them if anything changes but we don't have to see the consultant until next year now!

We've also had renal ultrasound scans and a DMSA too and they've come back as normal which is fantastic. I know there may still be control issues going forward but everything works how it's supposed to and we can cross any other bridge as we come to it.

Back in May she also had a hip scan and had her legs checked out and that consultant is convinced she'll walk ok which is fab - must admit she can't half kick with those legs!

So anyway, there you have it. We started this journey on 27th March when Daisy was born to be told all sorts of scary things (well they were definately scary at the time as it was the first we knew of Daisy's condition) and now it seems this first hurdle is crossed. I know they'll be many more but I feel that now, finally I can enjoy being a mummy.

Thank you all for your messages of support - I think this forum is going to be invaulable.

Em xxx

 

[Tegans Mama]

Ah glad to hear it. Life with a shunt is not easy!! We are always on edge with Tegan's shunt.

Did Daisy have a urodynamics yet? Hope everything is ok in that area.

 

[Emmea12uk]

Wb! I dont think we have spoken befoe?

Congratulations on noshunt!! They are a pain in the arse I am so glad everything is going so well. How is her bladder and bowels?

 

[bex]

So pleased you've had some good news. Enjoy being a mummy. xxx

 

[fazfar]

Hi EmmyLou

Just came across your posts and i am glad i did. My daughter was born with SB same form as little daisys. she was also operated on at childrens bham and she sounds quite similar to daisy. she is now 18 weeks, she has no shunt (yet!), she seems to have feeling in both her legs and feet and kicks them real good. no catheters but dont know about her bowel and bladder at the mo. one of her leg turns out slightly too. but shes doing so so well. i hope she gets to the stage daisy does. her head is increasing (at 18 weeks measuring at 42cms!) but neuro doesnt want to shunt her as its not necesary.
hows daisy doing now? i have added you to my friend list. hope to hear drom you soon

 

[Emmea12uk]

Hi! I hope you don't mind me butting in. My son has sb too. Congratulations on your daughter! Did you know gestationally about her sb? We did. We wouldn't change him for the world!

 

[fazfar]

Hi Emmaea12uk

Thanks. Yes we did know about the SB antenatally, at the 20 week scan. It was devastating but she is doing really well, if I knew back then about how she would be today I wouldnt have worried as much.

How is your son doing?

 

[Emmea12uk]

I was the same. I found out at 20 weeks and it was a massive shock - but like you said it wasn't worth the stress really. I am happy with him ad he is and I wouldn't change him for the world!

He is absolutely brilliant now. He walks but gets tired after five mins and needs a break. He is also double incontinent and has hydro. How is your daughter?

Are you on Facebook? I have a fb sb page with 100s of uk families on it with kids with sb. Emma is on there.

 

[fazfar]

Totally agree! I wouldnt change her for the world! when they eventually come into your life it makes the worrying pointless!
excellent! hes a walker, must have been such an amazing moment when he started to walk. how are his bowels and bladder managed?
my daughter is doing great, main concern is whether or not she will need a shunt, like emmas daughter her vents are enlarged but no hydro, not enough for a shunt
oh really you have a page, sounds good. how can I access it?