April was a busy month.

Naomi and Richard had a wonderful time in the show Oliver and we all enjoyed watching them - it was FAB.

Naomi is heading for her first school holiday , Rachel and Naomi go with all of Year 4 on Tuesday 5th May, for 4 days on the Isle of Wight - peace and tranquillity !!!!?

After a weekend to recover on our return we then head for Stanmore for the 5th Spinal Operation on the 12th May. The surgeons plan is to move the top rod to the right side of the spine and re-drill the clip at the top. This will mean the first day post-op in HDU.

A Great Day Out

Richard, Naomi and a large group of the Cast from Oliver Twist - Barton Players. Headed for Dickens World and performed all the songs from the show . They thoroughly enjoyed the day, Naomi was shattered today at school ! The show goes out over the Easter Holidays.

Spring has come to Barton !

We are enjoying warmer weather after our fantastic snow in February. Naomi is doing well at school and she and Richard are both in the village play Oliver Twist over the Easter holidays. We had our family Christmas present last week and went to see the London show - it was very good !

Richard and Naomi are busking with most of the cast of the Barton show at Dickens World this Sunday.

Naomi will be heading for the Isle of Wight with school at the beginning of May. I will be going to support her during some of the activities. We head for Stanmore for her 5th operation and moving of spinal rods to the right side of her spine on May 11th. We feel we are in a good routine with hospital now and know what to expect!

And home again...

Naomi and Rachel arrived home again on Tuesday afternoon. A new style brace this time. Naomi has recovered well, and we hope she can be back in school again from tomorrow. Thanks for your messages again over the weekend. No more hospital it looks like now until March next year.

Home for 24 hours

I had my operation on Friday morning. I came home on Saturday afternoon as we have to wait until Monday to have my new brace cast. I have a white corset to wear until then, this is a video of me walking so the nurses are happy I will be ok at home. Me and Mummy will go back this evening. I will go to the plaster theatre first thing tomorrow to be cast for a new brace. If they make it straight away I might be able to come home in the evening. I grew a lot in the operation and now I am up to Mummys shoulders ! This is the childrens ward at the RNOH.

Repeat Operation

Naomi had her repeat operation today. We met with the surgeon when Naomi was back on the ward and he explained that between the operation last Tuesday, and the post op x-ray last Thursday the 2cm extension they achieved on the spinal rods had slipped back. So today they re-extended the rods the 2cm again and changed all the screws holding the rods in place. Naomi seemed to be in more pain today than last week and is taking a little while longer to be convinced to get up and moving. This isnt helped by the fact that her new brace only made last week doesnt fit her anymore due to the change in shape of her torso today. She will need to be cast again on Monday (as the plaster theater doesnt operate at the weekend) and will hopefully get her new brace the same day. Depending on how she is on Saturday she may be able to come home for 24 hours in a temporary corset. Thanks for your texts and messages. It keeps us going when we are reminded we are not going through this alone.

Back in again this Friday 14th

This evening Naomis surgeon phoned us at home to say that having reviewed her post op x-ray he wasnt happy with the correction and that he would like to re-operate before the scar tissue heals. So Naomi will be back in theatre on Friday 14th at the RNOH. Whilst this is a bit of a shock we are grateful he took the time to phone us personally and explain the reasons why.

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.