New toy

Lucy has a new toy and it will help her so much when she eventually is sitting or trying to sit.She already enjoys kicking the mobile and Dan enjoys jumping in it too.Hopefully not when Lucy is in it though

Hospital appointment

I have been waiting to see Lucys Endriconoligist and today was the day.
I am hoping to get her on to growth hormone treatment and that is not in question for her condition but the timing is as in this country it is not usually given until at least a child is 18 mths ranging to 3 years in many cases.
Lucy is the ripe old age of 16 weeks and I want her to start it yesterday!!!!

In USA they have been giving it to babies from diagnosis and these children seem to do so well.
I have looked up so much info on it and seen first hand photos of children doing very very well and I feel that Lucy is already missing out,she has very little upper body movement due to poor muscle tone and although those little legs are not too bad she cant do much till she can hold her head up.

Outcome of today was good..............Im not jumping up and down just yet as I didnt come out clutching a prescription for it but my lovely Dr Datta has asked me to send him some info on reported findings of early intervention.

I did have shed loads of info.......on my old computer!!!!!

I came home rang UK prader willi association they didnt have any info on early startso I rang USA and she emailed me lots of info from all over world and I have now sent this to Lucys doctor and that will keep him busy reading for the next week or so.

I am to meet with Dr Datta again as he has asked me to attend another hospital along with Lucy for research.

I was shown the injection choices and feel that I will go for the pen type rather than the syringe as it looks less scary and comes with different coloured cases (A must for any fashionable baby)

All in all I feel happy as it seems like Lucy will start her gh sooner than later

Little swimmer

Daniel can swim without holding on to my neck like his life depended on it now.Well done little fellow you have made swimming time a lot more fun

Flute player

Here is Megan playing flute,accompanied by Daniel on vocals
Ready to hire for weddings ,parties and special occasions

Having fun

Lucy and Daniel went to play today and

a good time was had by all

Princess Lucy

Lucy is sleeping less and less now so we get to have a little play time,but she does look so content when she sleeps

My luverly lot: Oh sweet child of mine#links

My luverly lot: Oh sweet child of mine#links

Oh sweet child of mine

Keeping fit

Megan went to a cheerleading class tonight and as we watched all the very skinny girls doing gymnastics we both have decided it is time to get fit and so now begins the diet and excersise.
Megan has taken a leading roll in this and came home to a keepfit boxing dvd.
I will start my healthy kick tomorrow....I promise

My 3 babys

Here is dan lucy and megan

Lucy is 3 months old

Lucy starts physiotherapy

Lucy had a physiotherapy appointment today at the ripe old age of 14 weeks.
I seem to be seating her well and the thing is to keep her straight so that she reduces the risk of scoliosis (spine curvature)
She seems on track with her leg,body and arm muscle but her head is lagging(literally ) behind.
I hope that she will get stronger as I can already see the frustration in her face as she tries so hard but her little body wont let her do what she wants right now.

Lucy at 4 weeks

See how she has grown

Happy bunny

Lucy is 3 months old and such a special girl.born with a genetic disorder called prader willi.she is our very beautiful,extra special little lady