Home again

Naomi is home again this evening. She was cast for her new brace yesterday morning, it was made yesterday and fitted today. Once she had the brace fitted she had another x-ray so the consultants could check everything was well and she could be discharged. In the operation on Tuesday they lengthened the rods as much as they were able to. The surgeon has advised us that they will need to replace the rods in 4 months time, so we expect that to be March or April next year. This week went as well as we possibly could have hoped, and we are very thankful. Naomi again took this all in her stride. She challenges you to cook cakes whilst flat on your back !

Grown another inch

Naomi had her spinal rods lengthened this morning, the procedure was short compared to the previous ones. She has recoved much quicker has stood up this afternoon. Her surgeon discussed the possibility of needing to change the rods completely once they had assessed her in theatre. They didnt need to do this this time, but are planning to change them in March 2009. When we arrived yesterday the childrens ward was full so Naomi was given a private room. We are grateful, though Naomi misses being able to see the other children. Orthotics assessed her brace this afternoon, she will be cast tomorrow morning for a new one.

3rd Spine Operation in November

Naomi will have her 3rd spinal operation on November 3rd. This will be her 2nd extension of the growth rods in an effort to keep her back as straight as possible during her growing years. This will be a repeat of the procedure she had done in June. We all know what to expect, both good and not so good. Naomi knows the surgical team and those who will care for her. This coming Monday 20th October Naomi will go to Oxford to have the heart scan she needs to have before each operation to ensure there is no worsening to her heart valves and aorta that could cause complications in theatre, and to see the Marfan clinical team. We pray for a speedy recovery, so she can return to school and active life quickly.

Summer Hols

Well it has been a fantastic end to the summer term. Naomi was soon back at school full time after her 2nd spinal operation, and able to join in all of the activities except P.E. This was always a possibility to remove any risk of damage to the spinal metalwork, and to her Retinas. She was able to help the teachers with the lessons by timing and measuring etc. She did have some days when she was upset not to join in the activities but has coped.
We celebrated Naomi's 8th birthday with a party at Pots of art and a family trip to see High School Musical the stage show in London.
The holidays have brought better weather and a chance to enjoy relaxed village life. The local walks to the Barton Springs and hills and play parks have been a blessing to us all. Naomi has enjoyed a terrific week put on by Barton Players, a Youth Theatre Summer School doing Alice in Wonderland. The 2 shows were fantastic at the end of the week and were a reflection of the quality of the whole team - children and adults.

Home again

We arrived home late this afternoon. Naomi is asleep in her own bed quite exhausted from a long day. She has her new brace which is fitting much better than the old one. Not surpising as she has grown 2.5cm and her shoulders are at different levels to before the operation. The physios measured her lung function at 31% post operatively, whilst that isnt great, it is good that it isnt less than before the operation. We will all take the weekend to rest and be family together. Thanks again for you support and thoughts this last week.

More Plastering

Naomi went to the Plaster Theatre first thing this morning to be cast for her new brace. This should be made and fitted for her tomorrow, the style will be the same, but she got to choose a new pattern from the book. The current one is OK for her to get up, but isn't fitting very well. All being well we hope she can be discharged late tomorrow afternoon, though from experience we know this can take some time. Rachel was able to leave Naomi on the ward last night for 6 hours, and get some sleep in the parent accommodation. Naomi faces probably another 12 of these operations before she has 2-stage spinal fusion in her early teens, but knowing the surroundings, the clinical team, how to turn her and get her upright, and how the ward system runs has made this week so much easier to cope with.

Doing well

Naomi went in to theatre at 8,30 today, and we were called to recovery at 11,15. Her sats were a little low so she was on oxygen for a little while. By mid afternoon we wheeled her bed so she could join in a play session with the other children in the ward. She has eaten a little lunch and is resting just now. She will be cast for a new brace tomorrow, but we may be able to get her upright again soon using her existing brace.

10pm.. We found out the ward has a wifi connection so this evening Naomi was able to read the comments on the blog, and spend some time on disney.com. We had a 'moment later in the evening when Naomi's anaesthaetist was called as her heart rate was around 55bpm, should be around 90bpm apparently. We were relieved to find out this was normal for her, due to the effect of her beta blockers. We were encouraged to get her on her feet, and with some complaining (shouting!), she made it to the toilet and back. Rachel has slept this evening and will spend the night with Naomi whilslt I head home shortly before midnight. Naomis surgeon popped by at 8,30pm to see how she was. He said the operation went as planned, and they lengthened her spine by 2.5cm during the operation.

2nd Operation on June 3rd

We have recieved the date for Naomis next operation, Tuesday 3rd June. This time they will extend the rods attached to her spine to keep it straight. We expect she will only be in hospital for 4-5 days for this operation, that we expect will be required every 4-6 months. We know the team well now and know what to expect which makes things easier.

Naomi has the first surgery slot on Tuesday. All being well the surgery will be 2 hours, and if she is breathing well there should be no need go to to HDU.

BBC News..

The BBC came to our home at the weekend to record material for some features they are working on at the moment in association with the UK Marfan Association.

We are so pleased that Marfan Syndrome is getting such good publicity on the media.

http://news.bbc.co.uk/1/hi/england/7305035.stm

BBC Regional News ran the piece over several days.

If you search BBC on 'Marfan Girl' the video is available to watch...

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