Appointment tomorrow with the pediatrician ...

I am thinking this one is a little pointless just like an evalution thing..

What is there to Evaluate? My daughters heart is broken and there is nothing anyone can do to fix it!

Over an hour & a half bus journey there & then another over an hour & a half back just to be told to continue what i am doing!

Although i may bring up the possibility of her having ADHD while i am there....

I guess i better get some sleep need to be up at 6.30

Goodnight

A sad & lonely Louise x

Bit late but her results...

Well the good news is her Aorta has not dilated any further but the bad news is that her Valve leak has got slightly worse.

She is now on Beta blockers (In liquid form)

She was such a good girl again she was a little scared but she just laid there and had it done.

We did go to the toy shop after where i spent a fortune on her <3

She has an appointment with a london specialist in 6 months time and i hope it hurrys up so i can see what he has to say and see if the Beta blockers are doing there job.

Good health to all

Marfans Mummy x

Heart scan today..

So we have Nevaehs next heart scan today and i am feeling really nervous (But i wont show her that)

She is still asleep but i know it has been worrying her too as like before she is being very clingy, emotional and hard work.

This is going to be a 24th birthday to remember! A friend said to me i should have made another appointment but this was the earliest available appointment they had and i think Nevaeh is much more important than a birthday.

I will have to go wake her up in a bit and remind her of the day ahead and get ready to go.

Wish us luck. <3

Could my Surgery be a good thing?...

I was told by NHS Direct to go straight to A&E (Nearest being 19 miles away) after i told them about the Agony i am in and other symptoms.

While at the hospital i had a few tests done and they told me that they think i have Gallstones and that other symptoms i have indicate that i could have an infection from it...

For some strange reason you cannot arrange a scan there and i was told to see my local Doctor and arrange for a scan to be done back at the hospital and if it shows i do have Gallstones (Which is looking very very likely) I will need my Gallbladder removed and any stones that have got stuck elsewhere.

My point of this post is that although i am scared of the thought of Surgery, In a way i think it will be a good thing because if my daughter ever does need Surgery at least i can relate to how scared she will be (Of course my surgery is not anywhere near as bad as heart surgery but still!)

Also could be positive for her if i put on a brave face and then come out and tell her it hurt but was for the best and Mummy is happy then maybe that will help her if it comes to surgery for her.

This is what i am hoping anyway!

Sorry for a non Marfan related boring post but i really wanted to jot it down here.

Here's hoping anybody reading this has a FANTASTIC week :)

The Eye test....

The optician said that Nevaehs eyes..... are PERFECT!!!!

After everything we have been through this really is fantastic to hear!

She said yearly eye checks should be fine which is great because there is always some kind of check up and it gets so draining for us all! (By all i mean Me and my mother as we take her together, My sisters who have my son for me while we are gone. Bless them. And of course Princess Nevaeh)

So yesterday was fun... The children were playing with Cornflour goo and ended up covering the flat... and me in the goo!

Happy Nevaeh playing...

My arm covered in goo hehe

And... The Prince you have not met!

Messy little Zayden...

Happy days! :) x

www.Marfantrust.org

My fairy princess...

Nevaeh dressed up as a fairy princess with the Tutu and Wand i made for her... and doesn't she look beautiful! <3

I love to see her so happy! :)

http://www.marfantrust.org/

The sleeping problem....

So i had assumed her behavior at bedtime (being naughty and resisting sleep)

was just due to thinking about the marfans, but no it is even deeper than that!

She has basicly been scared to close her eyes... she says when she closes her eyes it all goes dark... like when someone dies!!! 

She is worried she is never going to wake up again!

She is worried she will never see her mummy again!

This is such disturbing news and all i can do is comfort her and reassure her she is not going to die.

I really hope that time will make things easier for the both of us.

http://www.marfantrust.org/