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 

93.9% attendance !

Naomi managed 93.9% attendance this half term. That's a record for her whole time at any school .  She's managed to reach C grade in all her subjects (with a  B in geography) . We are very proud of her achievements. 

She has started to take of her spinal jacket , as the doctor has asked , during the day at home for a few hours each time and has had one trip out to church without it on - first time ever ( in 11 years) to not be wearing a jacket in public.

We now have the challenge of getting her clothes  readjusted to when she isn't wearing any spinal jacket.  

Luke and Rachel were interviewed yesterday on local BBC radio as part of a Big tour  - luke talked about charity work at school and I talked about the Barton Comminity choir !