McKenzie and Holly pics

[Guest guest]

Hi Kimberley and Lucy,

Sorry I'm not very computer-literate. I looked on the photos page

right after I posted my message and found your album - your kids are

beautiful.

Leah and Abbie

> >

> > Hi Kimberley and Lucy, Thanks for telling me about your

families.

> > It's lovely to speak to others who understand how you feel.

> > I got a diagnosis soon after birth for Abbie. I was monitored

> > through my pregnancy because Abbie was tiny and they did the

> > genetics tests when she was born because they thought it might

have

> > been caused by a genetic problem. In the end they decided it

was

> > because I had bad pre-eclampsia but Abbie isn't catching up!

> > Thanks for your information about Moorlands Lucy. I'm sorry

> Holly's

> > surgery had to be postponed. Abbies surgeon said they would

leave

> > the first operation until she was 3 or 4. Abbie has an

appointment

> > in August so I think I will check what experience her surgeon

has

> > but I'm going to ask to be referred to Moorlands. We live in

> > Nottinghamshire but i don't mind how far if it's the best care.

> > I've also decided to go back to her geneticist. I have a

general

> > paediatrician but I don't feel like anyone really is co-

ordinating

> > which specialists she should see. I suppose that's because BPES

is

> > rare so they are not used to managing it. Also, I'm so glad you

> > told me about McKenzie, Kimberley - she sounds like a lovely

baby!

> > It's good to know that other parents whose kids have needs other

> > than the eye symptoms of BPES are here too.

> > Do you both have pictures of McKenzie and Holly on here? I'd

love

> to

> > see them and I hope you'll keep posting how they are getting on.

> > Thanks again for making me feel so welcome, Leah

> >

>