Monday, February 18, 2013

Holidays

It's half term and we are so ready for some stop time. We found out Naomi had mock SATs year 8 on her return to school after her surgery. With support from a fantastic OT and Naomi's SENCO we have been able to get support for ; Naomi's seating , breaks in exams so she can move around and change positions, she is starting to use a keyboard to type her longer pieces of work and will start touch typing at school with a small group of children , who also need to use a keyboard. In this day and age, where no one hand writes long pieces of work , moving over to typing will be far less effort for Naomi's hyper mobile hands . She had a wrist support fitted last week to see if that helps reduce the pain in her wrist while writing. We now have special cushions for her at school and home to reduce pressures on her sitting bones. With a BMI of 11 she needs lots of padding. We are getting a pressure relieving mattress delivered this week and a raised loo seat. Her annual eye test on friday showed no changes to the lens dislocation and eye sight is good. We will have the annual heart check next month, the enlarged aorta has been stable for 3 years now and Naomi takes beta blockers and losartan daily to help control aortic dilation by reducing her BP.
Naomi is now in Long Tall Sally trousers for school ( thanks Jenny for altering them so quickly) . We went for the 38" inside leg to get some growth out of them! So time to rest and recharge all our batteries. Sadly Rachel's mother died on January 8 th from a stroke. We had had a year with her with no speech after a stroke in 2011. Many treasured memories from last year with Grandma and Grandad celebrating their Golden Wedding. We miss her lots.

Saturday, February 2, 2013

I'm home.....

I'm home .....
Hello every one , I'm home at last and I'm glad to be back. My bed is so much better than the hospital one. I'm looking forward to seeing grandad today and my friend from school.
Thank you to everyone who sent me messages and prayed for me this week.
Love Naomi

P.s. Please take a few minutes to watch the film about the RNOH Hospital development appeal. You will see something of the hospital that we know so well, the amazing orthopaedic work they do and also for the desperate need to build the new hospital. Richard
The link is at the top right of the blog....





Wednesday, January 30, 2013

do you like my socks ?



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....
 
 

Tuesday, January 29, 2013

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 !!!

Wednesday, January 23, 2013

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 !!!!!!!!!)