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/

Nevaeh... The basics so far...

9th of feb 2005

My beautiful little girl arrived in the world with her big blue eyes and chubby little cheeks

She was truely beautiful and still is to this day!

But on 24th of september i had some heartbreaking news that was to forever turn my life upside down, My innocent precious perfect daughter may have an illness called Marfan syndrome!

After reading up the signs and symptoms i wondered if this was the true cause of her slight lazy eye?

Was my daughter healthy on the inside?

Will she die young?

Her father (whom shares the same illness) had told me his brother had died of it at 26 a year earlier

so alot was going on in my mind. I was terrified and on the verge of a breakdown.

After many tests and watching doctors poke and prod my daughter we finally got a diagnosis earlier this year.

I broke down in tears as i read the letter.. Yes my innocent little girl was a victim of this cruel illness and there was nothing i could do to help her!.

On july the 26th it was her second attempt at a heart scan and this time she was a very good girl and had it done, Unfortunatly expecting all to be fine my heart sank when i was told there is some dilation to her Aorta and a leaking valve causing blood to flow back into her heart Thank goodness my mother was there with us otherwise i think i would have lost the plot!

I tried so very hard for Nevaeh to hold back the tears but i just burst into floods of tears my mother told Nevaeh i was just hot and tired and i felt so guilty!

On the way home i felt my heart break even further when my innocent little girl uttered the words "so, is my heart broken mummy?" This was the most awful and saddening thing i has ever heard her say! i just told her No, it is just a bit sore and we need to look after it.

Since that day she has asked many questions like "Is my heart going to break" "Has my heart failed?" "What noise is my heart making" etc and she has been finding it hard to sleep and understandably has become a bit of a handful.

I am trying my very best to make her and her little brothers lives as nice as possible and i love them both too bits but sometimes the pressure and the pain get a bit much and i cry myself to sleep.

Her next heart scan is on November 15th and i am trying everything i can to take our minds off of the Marfans untill then.

I brought a MarfanTrust t-shirt the other day and i do plan on raising funds.

I may not be able to cure my daughter but i will do all i can for the possibility of having one in the future.

http://www.marfantrust.org/

Getting to know meeeee...

In my next blog i shall post the story of my daughter but for now i thought it would be best to introduce myself... even if nobody reads this blog i feel it may be theraputic.

 

Well... I am a 23 year old woman from suffolk.

The most important thing about myself is that i have two very beautiful children,

A 6 year old girl Nevaeh (whom suffers with Marfan syndrome which inspired me to start this blog)

And a 4 year old boy Zayden  (Whom is autistic)

I love them both very much, they are my world! 

I work from home which enables me to keep a close eye on my daughters activity 

Which brings me to the fact i teach my children at home.

Hard work yes but imo it is worth it!

I LOVE cooking and baking (especially with my daughter)

And my children always love to eat what i make!

I love walking and keeping healthy which i am passing on to my children

Nevaeh needs to keep her heart healthy and as there is already some dilation i am dedicated

to making her good food and getting her to do some gentle excersise and of course enjoy life!

Her brother never gets left out though and they love eachother very much!

If you have gotton this far then thank you!

http://www.marfantrust.org/