emkana - UPDATE

[emkana]

Well, I'm feeling a bit better today.

Arrived at my local antenatal clinic to be greeted by the midwife I had with dd1, who took a long time to listen to me and to commiserate, I cried loads and it helped in a way.

Then so the consultant, told him about everything, too. He wasn't that keen to refer me to Dr. Chitty, I think he felt that she wouldn't know that much more about things than the consultant in Bristol. But I kept giving reasons for why I wanted to see her, and then he phoned her there and then and she said that I should come and see her. She also had thoughts straight away on what might indicate Jeune's or what might speak against it - eg macrocephaly, which my baby possibly has, would speak against Jeune's.

So a marked improvement from the other consultants who hadn't even heard of the condition.

The consultant warned me not to expect definite answers, and I also know that I need to prepare myself for more bad news, but at least something is happening, that just feels helpful atm.

Thanks to all of you who take an interest in my ongoing plight, it means so, so, so much to me that so many of you care.

Oh, the appointment with Dr. Chitty is this week, but I don't want to say when exactly because it kind of freaks me out to say publicly on the internet where exactly I'm going to be at a certain point in time. Bit paranoid, I am.

Will update though straight after visit!

Oh emkana i hope for your sake you can get more answers good luck xx

Glad to hear you're feeling a little better, emkana.

Will be thinking of you this week.

Take care

xxx

Glad it went OK today Em and you got the referral you wanted. And you're not paranoid at all.

all the best wishes xxx

That's great - at least you will be speaking to an expert so any non-information you get will be based on very good knowledge IYSWIM! Hopefully she'll have a better idea and can rule out the nastier possibilities.

I'm glad you're feeling better and things are progressing, em.

Will keep on thinking of you. Take care xxx

well done for getting the referral, i've been following your threads and really feeling for you- it must be such a nightmare

good luck with the referral- i hope it helps with more concrete information
xx

glad they listened and you got your referrel.

Good Luck x

Good to hear you are feeling a little more positive today. I hope this Dr can give you soeme more answers, and clear up some of the confusions you have had.

I hope you get some answers when you see Dr chitty

thanks for update emkana .. so glad you got your referral

Oh I'm glad you're getting to see the people most likely to be able to help. fingers crossed for you XXXX

Wishing you all the luck inthe world for your next appt emkana x

Been following your threads Emkana. So glad you stood your ground and got an appointment with Dr Chitty so quickly. Good luck for later this week.

Well done.

Well done, emkana. Glad you are feeling a little more positive.xx

Glad you are feeling better...thinking of you all x

well done you and all the very best for later this week. It might help a bit knowing you're seeing someone who really knows what she's talking about - gives you a bit more of the control you may have felt you haven't had recently. X

well done for persisting.

When you see Dr. Chitty, make sure you get a direct link to her (Secretary's phone no. for eg.), so that you can go with any questions you think of later.

I am so glad that you've been able to make 'progress'.

Take care.

been following your threads...have no idea how I would deal with the situation you are in..hope I never have to...

Good luck with this weeks appointment. xx

Glad this visit went well.
Good Luck for the next one!
Don't think your paranoid about the telling thing. Isn't that exactly what we should all be telling our children?

You're getting somewhere :)

wishing you the very very best of luck for your appt xxx