Sunday, June 22, 2014

Sleep test results

Naomi did so well for her sleep test on a 4 bed ward on a very hot Wednesday night. After all was quiet ( that's 11 pm hospital speak ) the equipment was attached ; not very comfortable . The results showed a steady oxygen level of 96-98% ( normal range) and a steady low pulse ( as expected for her on beta blockers) . The doctors are all happy . 

We enjoyed an afternoon looking around Oxford on a tour bus before heading to Stanmore for an orthotic appointment to be fitted for new orthotic boots !! Both mum and Naomi were too tired to watch England go out of the Workd cup 


Wednesday, June 18, 2014

Back to hospital !

Can't quite believe we are going back into hospital ; at least it's for just 1 night and no pain involved.  Hoping this gives us a clear picture of Naomi's breathing at night time . 

All packed ready to go! 

Monday, June 16, 2014

Monday June 16 th

Naomi had her heart ultra sound check this morning at John Radcliffe Oxford; first one since the three big operations these last 7 months and we are very happy to say that her enlarged heart has NOT got any worse. 

Puberty  is a critical time for heart development so she will be checked every 6 month now.

We've  got the date for her sleep / breathing study , we go back to Oxford for that this Wednesday !! (We are happy to get it looked at before Naomi's school music tour  to Paris in July ). Then it's a round trip home via Stanmore Thursday afternoon to measure up for orthotic boots and orthotics insole and raised wedge for Naomi's slim feet and uneven length legs. 



End of week 2 back at school

Naomi managed 3 full days at school last week and even got the bus home Thursday and Friday. Restful weekend after a busy time and even managed a walk to see wild orchids that grow on the chalk downs around our village . 

Tuesday, June 10, 2014

Partying the night away

Naomi enjoyed most of the wedding celebrations just having a short rest in the afternoon. 

Monday, June 9, 2014

Hannah's wedding

Awesome worship at Hannah and Charles' wedding  wonderful day full of joy! 

Friday, June 6, 2014

Day 5 back at school

Naomi managed 3 lessons each day this week in school .  She's had good support from learning support and Student support staff. She's going to try full days next week but coming home during her PE lessons . 

Packed ready for the wedding ! 

This is the picture of me and my sister's and mum the night before my wedding 16 years ago this July 

Wednesday, June 4, 2014

Day 3 at school

Saw Orthodontist this morning - no more retainers on teeth in the day ; just at night,  another mile stone after 3 years dental bracing . 

Naomi in school 10:30-3pm today staying for first lunch time.  Lift broke down so she had some lessons in learning support. 

Hair cuts tonight after school ready for the Wedding on Saturday of Hannah and  Charles at Norwich Cathedral with all of Rachel's  family  . 

Monday, June 2, 2014

School

First day back at school (part time ) home at lunch but managed 3 lessons without needing to lie down. Mum had a walk in Wrest Park ( English heritage) 

Saturday, May 31, 2014

Grandparents Golden Wedding family week

Naomi managed a full week on holiday with all the Smith's , celebrating Grandma and Grandpa's Golden Wedding celebrations . Naomi managed this 3 mile walk needing to sit on benches and rocks a few times . Not easy but a good chance to see what she can achieve.