Happy Christmas 2010

Well its been too long since we sent any news. Naomi was sent home in July and we waited to see the new Doctor who had started to fit Magnetic rods. After 3 months waiting to see if it could happen, and Naomi being happy about the changes, we found out today that it is unlikely that the next operation can be magnetic rods ( as they have not got ethics approval in time to continue doing then on any more chidlren) so we are going back to our Consultant to discuss another extension of the rods in the way we were doing it before this pause. We will let you know in the New Year what happens once we know. In the mean time have a great Christmas celebrating Jesus - Emmanuel - God with us!

Rachel

Chilling at home.....

So why were we sent home? She just hadn't had a significant growth spurt to cause a 'C' shape on her spine since the march operaton. Also Richard had seen a talk at the scoliosis day 2 weeks ago where a new technique was presented by a Stanmore surgeon who has done 18 new magnetic lengthening ops with a new state of the art op where they don't cut you open each time! We had asked our surgeon to refer us to see this surgeon (last week) to see if it is worthwhile changing naomi's rods completly to this new technique. So that was also considered in last nights late night chat ( he always comes about 9 pm to see us so no surprises there- he just works crazy hours). If we don't change the rods to the new technique then she should be ready by October for another stretch.
She heads back to school this afternoon as it's the going up day today with next terms teachers etc. Thanks for your support!

Not Operating after all !

Rachel has just phoned me (9.45pm) having just seen the surgeon... They have reviewed her x-ray today and have decided there isnt a curve that needs straightening now, and they want her back in October! We are bit shocked understandably, but its of course good news.... 1 less operation, 2 more weeks at school, and a birthday to celebrate again. They are packing up and heading home!

first on the list ...

8th time in a row - Naomi is first on the theatre list again ! She texted me just now to say she's watching Camp Rock and eating gummy bears. Perhaps the last nourishing meal for 48 hours !

Schools Out for the Summer

With the surgery around her birthday we celebrated 3 weeks early, or should I say started the celebrations 3 weeks early. No doubt they will continue in a couple of weeks. Naomi finished school at lunchtime today, there are 2 weeks of term left, but its unlikely she will make it back in. They are doing the rounds of doctors, xrays and such this afternoon. The childrens ward is full, so they are on the adolescant ward for the first time.

Going back for more.... 8th Operation in July

March seems like ages ago.... here we are in July, and thinking about Naomis 8th spinal operation on the 9th of July. The rods have reached their limit on extensions, so her surgeon will be replacing the lower rod completely. She should have had this operation in August, though having booked a holiday in France we elected for her to have it in July. Richard will be going to a Scoliosis Day at the RNOH this coming Saturday 26th June, where much of the day will be around Scoliosis in children. He will be sharing 20 minutes or so on the 'Journey so Far'.
We have 12 spinal braces in the roof, and will take those to show how they changed as Naomi grew, her scoliosis developed, and pre & post operatively.
Anyway, more in a week or 2 as we pack bags again, organise baby sitters for Luke, work out shifts to stay with Naomi in the initial period in HDU, and juggle work, school runs etc.

24 hrs at home..

Having done this several times now, the ward were happy for us to bring Naomi home for 24hrs yesterday afternoon. She wasnt terribly convinced by the idea, the thought of walking to the car perhaps. Once we were home, about 40 minutes, Naomi relaxed quickly, and had a decent nights sleep, in between some pain killers and couple of turns. Rachel slept 12 hours too! They headed back to the ward this evening to be ready for a cast first thing tomorrow morning.

doing well ...

it turned out that the surgeon didn't need to replace the lower rod, and managed to get the extension this time, he will replace the rod in august . Naomi recovered much quicker from the surgery this time and has been out of bed a while this evening. We have to wait til monday for a brace cast, so a quiet weekend on the ward which has emptied through the day.

Replacement Rods

Rachel and Naomi found out this afternoon that her surgeon intends to replace one of the rods as there is no more capacity to extend the existing ones. This is a more significant operation than we were expecting, and Naomi will certainly be in HDU for 24 hours or so. She is first on the theatre list tomorrow at 8am.

Heart Scan on Monday

Naomis heart scan showed no change, which we were delighted to hear. A drug trial is commencing later this year, which we hope to be part of. All set for surgery this Friday now...

Jungle book and then back for the 7th Operation at RNOH

We have just had the opportunity to see Naomi in a fantastic production of Jungle Book put on by her Saturday Drama group " Upstage". Naomi and her friend Charlotte played 2 of the Vultures ( who in the Disney version had the Beatles as the voice over ) . They led the whole cast in the song "That's What Friends are for"!! It was Naomi's first solo part and she sang her heart out. We are all very proud of her.
Naomi has some great friends at Arnold Middle school and they have been a huge support to her as she has settled at Middle school and coped with her operation in November. We are now 5 months on from that operation which means the next one is due.
We head to the RNOH (Royal National Orthopaedic Hospital )this Thursday 18th March ready for the next rod extension first thing Friday morning.
We value all the support we have at home, school, church and our wider family and friends. Thank you.
"When your alone who comes around to pick you up when you are down.?.................and when your outside looking in who's there to open the door? That's what Friends are for! (what Naomi sung in Jungle book)