Hello all
We had a lovely Jubilee weekend and we are enjoying having half term away from school. I'm having a hoop fitted for my dental braces today and I am very tired because me and Luke slept in a tent last night and didn't get very much sleep.
I hope every one is enjoying their holidays
Naomi

New Youtube Video

We have made a new youtube video to show how the last 5 years of spinal opeartions have progressed. Follow the link below

http://www.youtube.com/watch?v=5jOjFozhU_s&feature=youtube_gdata

Summer Term 2012
Naomi started Losartan last week and is doing OK on the current dose. The hope is that it will slow down her heart ( aorta ) enlargement and possibly slow down some excess bone growth. It is being trialled internationally ( although Naomi was too young to be part of the trail at our hospital in Oxford). It is a widely used heart drug already with few side effects and lots of Marfan patients are currently using it.

We have been told by our spinal consultant that he wants to consider waiting another year to 18 months before Naomi's next and final operation... we see him in May to discuss it in more detail.

You Tube Part 2

http://www.youtube.com/watch?v=5jOjFozhU_s&feature=youtube_gdata

home thursday evening

We got Naomi home yesterday evening.... her brace arrived mid morning, went back for some adjustments, and then we had to arrange for some standing x-rays before discharge.
She slept well, and doesnt seem to be in too much discomfort this morning.
Thanks to all of you for your messages of support.

Having a fab time with Georgina

Hi guys
having lots of fun with my bezzie (Georgina) we have played on the wii
i have been for a walk around the ward with Georgina
missing all of you lots Georgina was brave with me and had her obbs (ask Georgina if you don't know what they are ) we had a McDonald's (yyyyyyyyyyyyuuuuuuuuuuuuuuuummmmmmmmmmmmmmmmmmmmyyyyyyyyyyyy) missing you lots Naomi

chillaxing on wednesday afternoon (a special note to 7CMc)

Hi 7CMc I am missing you all too and I am also loving my stocking as well (Thanks Tom!). I am sorry to hear about your phobia of samosas Tom and at least its healed. I hope you had fun in French I am hoping you recorded them because I would love to hear them. Sorry to hear about your black eye Kyle dose it hurt ALOT (and I mean ALOT) I bet it was from a football or Rugby accident (I'm just going to tell you I am writing this with one hand and there is a leaking (automatic sensor) sink a few meters away and dad is running around with buckets and bed pans full of water) ! Harrison, no they don't have scotch eggs in the canteen but I'm sure there on the adult menu on the other wards. I have now only 1 out of 2 canulas and am not attached to a drip. I am not wearing any puffy socks but still wearing the very tight stockings.

missing you lots and lots

Love Naomi

Dear Friends and Family
Naomi had her 12th Spinal rod extension this morning . She went to the operationg theatre at 7:30 am. She is now recovering on the ward with Daddy looking after her. She is showing her squeezie stockings that reduce the risk of blood clots.
Rachel and Luke ( whose helping look after me !)

going in today

Hi I going into hospital today . Ive been trying to upload a short video I made at Christmas but it isn't working yet. Its so funny Ill try with Dad once we are in hospital. Mum is looking after Luke this time ( or should I say Luke is looking after Mum who is resting after an operation herself).
Love Naomi
PS Thanks to all at church LCF
PPS Hi to all in 7CMC and my BF's and BFF's

Ready for 12

Naomi goes back to school today for 3 days following the Christmas holidays, before heading back to the RNOH on Monday for a rod extension. On this occasion Richard will be with Naomi in hospital, with Rachel at home with Luke.
Rachels Mum is still in hospital after a 2nd stroke 3 weeks ago, and Rachel herself is recuperating at home following some time in hospital between Christmas and the New Year. We know that Naomi recovers well after her operations, and ask the same for the Mum and Grandma...