Discovered a new sowing shop near us Naomi's done 2 workshops so far!

Celebrating with Uncle Russell for his 50 th in Macclesfield

Heart check up

Naomi had her 6 monthly heart scan last week at Oxford John Radcliff . All is well with the aorta staying enlarged but stable at 3 cm and the mitral and tricuspid valve prolapse stable with mild regurgitation.  

Naomi's now 180.7 cm ( 6 foot) and 6 1/2 stone . 

Naomi will have an MRI next year in preparation for moving up to the adult cardiac/ MARFAN clinic ! 

We return again this week to Oxford for the growth clinic . 

( Naomi with friends dog!)

Great excitement in the Smith house

Sold the Wii and bought an Xbox - Luke's very pleased he owns 50% of it! 

End of term

Naomi's on 97% attendance at school this term !!! 

Pictures from Golden wedding family gathering 2014

Special day with Dad Remembering mum on the second anniversary of her death January 8 th

Christmas with family and look no brace!

We had a lovely Christmas seeing all of both Richard and Rachels family .  During the holiday Naomi managed to wean herself off her last Spinal  jacket  ( about number 25 we think ).  It is now sitting in a cupboard waiting to move to the loft now that Naomi is 24/7 without it!

This has been a huge achievement having worn one everyday to school since Christmas time in her reception class , yes, that's 11 years ago ! We are so proud of her courage and determination . 

End of term show "Hair Spray"

Naomi has had a great month helping back stage with costumes and set for the end of term show "Hair Spray".  Last night of the show yesterday ; over 50 students singing , dancing and an orchestra playing the full score! Amazing talent both on and off stage. Well done Naomi ! 

Physio rehab starts

Really strange to be back at Stanmore and not going in for an operation . Our routine has been spine operation ever October/ November and every May/ June now for 7 years. 

Naomi had her first physio session today to assess her back strength after 18 back operations and 11 years of wearing a spinal jacket.  No surprises that she has muscle weakness and reduced  core strength.   Tracey , her physio,  helped Naomi to walk after her very first spine operation ;  it was lovely to have her do the assessment today 7 years later. 

Follow up in 4 weeks !! That's Christmas Eve nearly …!!!!

Breakfast in hospital canteen before 9 am appointment today