Naomi is home....

We got Naomi home late yesterday afternoon. She still has pain in her hip. We were taught to use a pain scale with her last year, and that helps to establish just what pain she is feeling in her back and hips. The doctors did some x-rays yesterday but found nothing of concern. We can only conclude that its maybe a muscle strain, or a shift in weight balance on her hips, with the spine being straightened. All not surprising really as they stretched her spine 2.5cm.
She is fairly anxious about things, and we think the combination of that plus the pain killers they have given her this time have made her quite nauseous. This is an extra complication, but something we have to work through.

Hoping to get home tomorrow....

Naomi has her new brace, and if we can get her mobile, and can manage the pain effectively, we hope to get her
home tomorrow.... It will be much easier to care for her in a home setting, as we get more used to doing many things the nursing staff deal with each time.
Rachels birthday is tomorrow too, which will be nice to spend together...

Im painting

Rachel slept on the ward last night, as Naomi was in some discomfort.

We were up at 6 today getting ready to be cast... The pain in Naomis hip is being managed with drugs, but we arent sure whats causing it.

Distractions help, so we have managed to get her in a chair with the play therapist, to do some painting.

Grown again..

Guess what... my surgeon says I have grown 2.5cm as they extended my back with the rods... Now Mummy will need to take me shopping again for trousers ! Naomi

Awake and in charge!

Naomi is on the ward again...she seems to be recovering fairly quickly this time, and is asserting her authority ! Its a good sign we think !
Hi to all in Class 5NP at Arnold Middle School. Bet you were watching Hannah Montana rather than doing Geography!
We havent seen the surgeon yet, but the notes indicate they want her back in 4 months for another extension.

In Theatre

Naomi is in Theatre now...and was first on the list as she has been each time weve been here. she was very calm yesterday, but was a little unsure about everything this morning. We eventually persuaded her to take the Tomazapan (sp!), and she was soon calm and joking with the nursing staff again.
We are told this is a minor operation, compared to other she has had I suppose it is, although it doesnt always feel like that. There are lots of little girls with scoliosis on the ward this some, some having rod lengthening too. Naomi was missing being back at school this morning, she may not be so keen next week !
Richard

6th Operation - another rod extension

Naomi is on half term next week, and then back into the Royal National Orthopaedic Hospital on 2nd November for another rod extension. Not as major operation as she had in May this year, but they will probably get 2" of extension on the rods. We hope to have her home within a week this time.

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