Thursday 25 February 2010

<3 Cardiology <3


Today we met with the paediatric cardiologist from Bristol. He explained how many mitochondrial disorders affect the heart. I already knew this so was nervous to say the least, but hoping, praying and crossing everything that there'd be Nowt wrong with her little ticker. I mean, surely she has enough on her plate already.

I knew that dr Ch had requested some tests on the heart, but I thought, and probably for the best that today was purely consultation. Anyway, it wasn't; she had an 'echo' done on her heart.
It seemed to take a lifetime...he explained things he could see to a student doctor-but it all sounded foreign to me ( I haven't yet educated myself on the heart). Anyway.... He said 'it all seems...NORMAL'!!!!!!!?

I usually hate that word. There's not much about Hope that is 'normal'. So to hear that her heart is normal, I'm ecstatic :0D

He did say that just because it's fine now, doesn't mean it always will be. Then more good news...... He wants to see her in 2 years!!! Well, there have been times when it all seemed so bleak that she mightn't ..... But, well I guess they aren't as negative right now.

I did however get some food for thought about the whole further investigation thing. He said how with certain mitochondrial disorders, different vitamins can be given to prevent/improve things, but until we know more.... So I'm being swayed :0/

On cloud 9 for a change :0)

Thanks to everyone for the good luck wishes and prayers today! Means a lot to me n honkey

And thank to S (hope's fsw) for coming along today. I know you'll read this, and that people from Rainbow Trust read it too- you'll never know how much it means to have the support we get from you. I expect everyone there is really nice, but we think we are really lucky to have S!!!

Xxx

Wednesday 17 February 2010

Hope's birthday party


The laptop got a virus, so we had to wipe it. It's not up and running 100% yet, so can't add all the photos I want to. From my phone I can only add 1. So I will add one of the best photos we've ever managed to take of Hope (taken at her party) she's smiling AND looking in the right direction!!!

The party was fabulous. Hope was joined by her buddies for a bouncy castle party. We played pass the parcel and had a piƱata. And ate lots of jelly!

Thank you to everyone who came to celebrate with us!!

Xxx

Tuesday 2 February 2010

Happy 1st Birthday my darling baba Honk

Dear Hope


Happy birthday My super little wonkey baby

Thank you for gracing us with your presence for a whole year. !

Thank you for being the most cuddly baby, just what we needed!

 Thank you for giving me the most wonderful view when I wake up every morning-

you, next to me!

Thank you for the way you reach up and hold my hand

when you are feeding or cuddling.

Thank you baby, for the most beautiful smiles you give us each day-

that's all mummy ever wanted- knowing you are happy, mAkes me happy.

Thank you for teaching us all to appreciate the  little moments in life, and

teaching us to enjoy the present.

Thank you for showing us true love,strength, dignity and bravery;For being happy, despite what life

throws at you.

Thank you for letting me Kiss you a million times a day on your

chubby, warm, pink cheeks.

Thank you for your beaUtiful curls behind your ears, your beautiful blue eyes and curled eyelashes, your perfect skin and your funny belly button.

Thank you for being the cutest baby in the world!
Thank you for needing me, as much as i need you.

Thank you for choosing us as your family. We are truly blessed and honoured.

Thank you for a wonderful year!

Birthday girl with her big brother and her new toy- the mirror chimeabout (which Hope LOVES)



A memento of the special day





afternoon nap


Birthday celebrations at Frankie and Benny's



The cake she overindulged so much that she got heartburn~poor baby

                                   'nevermind photos and wishes...give me some of that cake!'

MMM, Honkey loves birthday cake!!!
Lilypie - Personal pictureLilypie