would you like some maltesers!

RNOH - Hospital Gates....

We have driven through these gates many times, and are always reminded of the words as we have done so....

 

 

this evening

We needed to get naomi moving this evening - nurses instructions to avoid catheterisation !! Rachel has been trying to convince Naomi to get up - and was surprised to face Naomi at eye level... looks like she has grown somewhat again. I know what that means - new clothes again...

Luke & Dad visited...

Naomi was back on the ward around lunchtime today, and has been very sleepy the rest of the day. Luke and I visited this evening for a while. Naomi was cheeful, but in some discomfort.
They have her on an airflow mattress this time to reduce the risk of pressure areas. We also missed booking her into plaster theatre tomorrow (though judging from her mobility this everning , its doubtful that she would be able to stand tomorrow morning anyway), so that will have to wait until Thursday.  It is faily noisy on the ward, and Rachel will need energy to keep going until at least Friday to get her home.

First on the list

Naomi is first on the surgery list today, and will be in theatre sometime around 8,30. She has moved for the first time on the adolescant ward from the childrens ward - much bigger area around each bed and less busy, though will be later to calm down in the evenings.
In recent months Naomi has been taken medicine by tablets, so hopefully she will have the pre-med to help her. It isnt nice in the liquid form !!!

Next Surgery Tuesday 29th

We had expected Naomi to have her final spinal fusion in summer 2013, however she is still growing and her surgeon would like to do a couple more extensions and look to do the fusion in summer 2014.
Naomi is delighted as she can think about enjoying this summer and her next School in September.
We keep losing count - but think this is the 13th!
This is Naomi after sledging at the weekend (dont tell her surgeon !!!!!!!!!)

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