Pirates of Penzance - Barton Players Summer School

Well it's nearly the end of the summer holidays and Naomi is getting ready to go to her new school in 2 days time. All of us were involved in the Drama Group summer school. Naomi played the part of one of the Major General's Daughters . She did so well as it was a long day from 9:45 - 4pm for 6 days with shows Friday night and Saturday. Luke was of course a pirate and had his debut on the Friday night but felt too unwell to go back on stage on the Saturday - we were very proud of his hard work as it takes a lot of concentration to sing, dance and remember your moves all at the same time at the age of 7. Richard and I enjoyed helping and were very proud of them both.

We have a date set for November 2nd for Naomi's next operation and hope she can have a good 6 weeks to settle in her new school with old friends and new ones. Nearly all of her school year are going into the new school with others from other village lower schools joining them. see http://www.arnold.beds.sch.uk/

Final week at Ramsey Manor Lower School

Naomi has had her 6 week check up today and all is well. The doctors were quite keen to do the next extension operation in August but have been kind enough to allow Naomi to wait until after October half term so she can settle into her new school - Arnold Middle School - in September ( still in the village and almost the same walking distance from home). Naomi's latest heart test in Oxford showed that her dilation is stable and they are happy to see her in a year rather than 6 months. We look forward to a summer holiday with far less worry than the last and confidence in the future and all that Naomi has achieved. Naomi and I were talking today about how much she wants to tell her new school friends about her back/ Marfan's etc. I said it can help to be bold and not shy then people know how you feel about it. She said " does bold mean the same as confident ?" ! She really is a very brave girl who faces the future head on at the moment and lets little bother her. We hope you have a restful summer!
Love Rachel
above photo is Naomi in Oliver Twist Barton Players production Easter 2009

Back to school on the hottest day of the Year !!

Naomi managed to go back to school today full time but " felt very sorry for herself" said her teacher ! "It was so hot Mummy !! ". She had a chance to lie down and have Calpol at school. She is having some pain in her shoulders and hips on and off - a shooting pain that comes and goes but most of the time she is pain free and running around. We had a good half term " holiday at home" and got out for day trips to London - clothes shopping and shoes now size 4 AA width ! Roald Dahl museum and easy walks .

Home and resting

We managed to get Naomi home yesterday, whilst Luke was in London with Beavers. Her neck is very stiff, not surprising after the repositioning of the rods between her shoulders. Rachel and Luke are at church this morning, and Naomi and I are watching a Hillsongs DVD. It always feels good to be together again after these crazy weeks. We are thankful Naomi recovered so quickly this time. a tribute to her determination, and willingness to keep doing this.

Mum and Dad are glad im up. Im not so keen!

Naomi has been up and out of bed today. Amazingly we she was cast and got her brace the same day as there were no other children on the ward having casts. Once she had her new brace she was able to get up. She had another xray this afternoon, and if we can get a doctor to look at it tonight, we might be able to get her home tomorrow. Naomi isnt so keen to leave her bed, she is very sore, but we know we can care for her much better at home.

Rachel here...

Hello every body - I am at internet cafe at the hospital... firt visit in a week- this is a well earned break today. I have not been able to see the blog since Rich left with his laptop on Wednesday and now its Friday. Hopefully Naomi will see it tonight when Rich comes for a swap over. Naomi needs to mobilise a bit more today - she can sit and walk a little but is complaining quite alot. She is tired after her plaster casting this morning at 8am !! We hope her new brace will come this afternoon before she goes for an x-ray. Thank you for all your messages. Love Rachel

Hi again to Red Class

Thanks for telling me what you have been doing. I havent been able to do any school work here yet. Please can you ask Mrs Fennel to send me the tests you have been doing so that it will be fair? I miss you all, and the Isle of Wight. Hopefully I will be able to get out of bed tomorrow for the first time. Love Naomi

a message for Red Class

"I am doing well. I hope you have looked at the video I sent for you. I hope to see you soon. If you can, send me a message. Love Naomi."

Back on the childrens ward

Naomi left the High Dependency Unit just now, and is back on the childrens ward, many of the tubes have gone, though she is still on oxygen, and has her morphine pump. She had a restful night and slept most it. We hope to be able to start mobilise her on Friday so she can be cast for a new brace. Right now the Famous Five are keeping her amused!