The Easter Bunny was very busy with lots of goodies for Niamh and she had a great holiday from school.  We hope that you all had a great Easter too and that the Easter Bunny was good to you all!!

On 15th March we went to Bristol for Niamh’s 12 month post op check up. Can’t believe a year has gone in already and what a busy year! The good news was that  the doctors and physios in Bristol were very pleased with her progress.  They took lots of measurements of her legs, hamstrings, abductors, quads etc. and compared them to the measurements taken at the last check up.  She has done very well and improved in all areas. Overall they can see a big improvement and can see the results of the hard work of her physiotherapy for the past year.

We go back in 12 months for our next check up and in the interim we are to keep working hard. They said the muscles in her legs are still weak, especially in her right leg, and we need to concentrate on weight bearing exercises to build them up. We can see that Niamh has become much stronger and stands so much taller. She now flies along on her tripods, is walking around slowly but surely on crutches (they give less support) and can walk quite confidently holding an adult’s hand. Her progress has been all positive and she is certainly, slowly but surely, going in the right direction and will, with continuous effort on our part and her’s, walk independently some day.

One thing for certain is that Niamh’s life has been greatly enhanced by the SDR operation. She is a much happier child since her operation knowing that she has far greater independence and she can do many more things now than she could before her operation like climbing up/down the ladder of her bunk bed, riding her tricycle, going to the bathroom with no assistance, getting in/out of a car with no assistance .  This time last year she could never have managed to do those things.

We again are so appreciative and grateful for your support and interest in helping Niamh’s wish to come true.

A massive thanks to Karla Elliott and her lovely daughter Emily for giving Niamh a huge New Year surprise and inviting Niamh and her family to see Jedward in the Olympia panto "Jedward and the Magic Lamp" on New Year's Eve. The biggest thrill of all was meeting Jedward backstage after the show. It was the best possible end to Niamh's amazing year and a start to what we hope will be an even better new one. We all really appreciated the kindness and patience of Karla and Emily for thinking of Niamh and giving us all such a great surprise and also how great John and Edward were to all of us.

  Hi everyone, hope you are all well and getting ready for Santa!! I just want to let you know how I am doing. I got my six month evaluation report back from the hospital in Bristol and they are very happy with my progress. They did all of the tests again on my movement and mobility which they had done before I had my operation and my scores have improved in every area of the tests, which made me very happy!

I am working really hard all the time and my walking is improving slowly but surely all the time. I am still having physio every day and going to my theraputic hose riding every Wednesday. With all of the hard work my legs are getting stronger and my balance is getting better all the time. I have got new tripod sticks now with a smaller base and I am starting to practice walking with just one tripod and a standard crutch.

I just got measured up for new ankle splints to allow my feet to move a bit more freely, you can see in the picture that my orthotist takes a plaster cast of my feet and legs and then goes away to make the splints. I will put up a picture of the new splints when I get them, I had ballerina pictures on my old ones and I have picked bunnies for my new ones!!

Thanks for all your help and support, I will post a video of me walking in my new splints when I get them.  Love, Niamh xxx

We are now back from Bristol and are very happy that everything went really well.  We met Niamh's surgeon and physiotherapy team and Niamh spent the day walking, sitting, kneeling, standing and stretching for them.  She was exhausted by the end of the day!  Niamh got great enjoyment from showing off to everyone how well she is doing and how much her strength and mobility has improved since we left the hospital last April, We could tell from the grin on her face that she was enjoying it.  None of us could believe that six months has passed since Niamh had her operation, it has all passed in a flash.

The team took videos of her standing, kneeling and walking on her sticks for other specialists to review after we had gone.  They also took a vast range of measurements of Niamh's ability to move her legs in various ways and of the tightness and flexibility of every muscle, hamstring and tendon imaginable!  All of this data was input to their computer system and compared with the same range of data taken just before Niamh's operation.  We were delighted when they told us that every single measurement displayed an improvement from pre operation and that this was excellent progress after six months.  The surgeon told us that he would have been very happy with progress if all of the measurements had only returned to close to what they were pre operation and that an improvement in all areas was a great sign of the progress which Niamh can make in the future, as long as we all keep up the hard work!!

Once everyone involved in the hospital has reviewed all of the test results and videos we will get a formal progress report, in about two weeks, which will detail Niamh's progress to date and make suggestions for any change in Niamh's exercise regime and additional orthotic equipment required.  Our next check up will be in Bristol in another six months.

Thank you for all of your good wishes before we went over and for your continued interest and support.  It is greatly appreciated.  

Niamh has had a very busy summer of exercise, physiotherapy and swimming, with lots of fun and relaxation added in as well! Niamh and her sisters are all back in school now and a normal routine is returning to the house, which is better fo... r regular physio and exercise. You can see from the picture that she runs out to school with a smile on her face every morning….

We are happy to report that Niamh continues to make good progress and is getting stronger all the time. The house is filling up with more and more exercise equipment, the latest addition being a trike and next on the list being a stepper. All of the variety in the exercise programme helps Niamh to keep up her work.

Her legs are getting stronger and we continually encourage her to keep her legs straight and her heels on the ground. She is bored hearing this all day, every day, however it is important to keep her working hard. We need to work more now on Niamh’s upper body strength, hips and tummy muscles. Niamh does not use the walker anymore and walks with her tripod sticks or with one tripod and holding somebody’s hand. We use her wheelchair now as seldom as possible, only when there is a long distance to travel. In spite of all of the progress, independent walking is a long way away and there is still a lot of hard work ahead.

We are greatly encouraged by many comments from people who have not seen Niamh over the summer telling us how much better she is walking, how much stronger she seems and how much taller she is. It is good to hear that other people see her progress and it is great encouragement for Niamh to continue with her hard work.

It is hard to believe but we travel back to Bristol on 24th September for Niamh’s six month check up with her surgeon and the team in Frenchay hospital. We will find out then whether or not Niamh will require tendon, muscle or hamstring lengthening and we will get a full report on how they think Niamh is progressing. We will keep you all posted.

Thank you as always for your continued interest in Niamh and for your good wishes. Fingers crossed for Bristol on the 24th!!

Another piece of physio equipment that keeps Niamh busy is her "horse", Nutella.  It is called an i-Joy Ride and is like a horse saddle which moves at variable speeds and does great exercise for her hips and pelvic area.  It is also great for improving her balance.

Niamh is making great progress with her physiotherapy and getting stronger all the time, little by little. Hard work every day is paying off and Niamh is moving more and more from her kaye walker to her sticks for walking around when she can. We have two sessions of physio every day, theraputic horse riding once a week and swimming once a week. The house is slowly being taken over by exercise equipment!! Niamh is enjoying her new treadmill and can now manage a couple of four minute sessions a day.

A huge thank you to Cíara Duffy from Johnstown National School who organised an art exhibition and gave a violin recital while people viewed the art to raise funds for Niamh's Wish fund. Cíara called in to say hello to Niamh and deliver her fundraising proceeds at the weekend. Thank you so much Cíara.

18th May - We are home from Bristol over four weeks now and Niamh is making fantastic progress.  All of the remaining pain from the operation is a distant memory and the hospital stay seems like a million years ago!  Niamh is pictured standing straight and tall in her walker with both feet flat on the ground, something which she could never do before.

Niamh is having two sessions of physiotherapy every day now, an hour and a half first thing in the morning and an hour in the evening.  It is hard work but the progress is there for all to see on a day to day basis and each day she can walk a little further on her walker than the day before.  She took her first tentative steps on her new green tripod sticks two weeks ago and is now able to walk gingerly around the house on them but it is slow progress.  She has also once or twice gone for a short (100metres) walks on the footpath outside, when it isn’t raining.  Getting her off the walker and onto the sticks full time will be a very big deal as her strength and co-ordination will improve greatly when she is using the sticks full time.  It will be a big step (pardon the pun) towards independent walking

Niamh is going to school every day now for three hours after her morning physiotherapy. She loved being reunited with all of her buddies in her class and as usual everyone in school has been great and made her feel really happy about being back.  This week Niamh, after much pleading on her part, she started back in Room to Grow crèche, just for one hour per day three days a week after school, again to give her a little more playtime with her friends there.  Pauline, Des, Michelle and everyone in the crèche have given us fantastic support throughout our journey and we are very grateful to everyone in Room to Grow.

The really big news in the last few days is that Niamh has started to be able to stand with her feet flat on the ground,  her legs straight and her arms at her side for a few seconds and more importantly “with nobody holding her”. She has managed to reach about 30 seconds standing this way a few times since Sunday which is really fantastic as she could never do this before the operation.  It is a huge psychological step for her as she has relied on somebody holding her or holding onto something herself to stop her falling all of her life so far.  We will be working hard on this independent balancing a little at a time over the next few weeks.

Thank you all for your continued support.  Everything is going really well at the moment and Niamh’s progress is very promising.  We will keep you all posted. xxx

27th April - Niamh has been home nearly two weeks now and is gradually getting back into the routine of home life after the operation and a month in hospital.  It took a while to get sleeping and eating habits back to normal and Niamh was extremely tired all of the time for the first week home however that has passed now.  The only remnant of the hospital regime is the painkiller medicine which needs to be taken three times per day and which does not taste very nice, as we are constantly reminded!!!

Everyone who sees Niamh comments on how tall she looks since she has returned from Bristol, on how straight her legs are and on the fact that Niamh can now stand with her heels touching the ground, something which she was never able to do before the operation.  We have seen fantastic progress almost every day with Niamh growing stronger and able to walk further.

It is fantastic to see the positive results which the daily physiotherapy regime is producing.  Niamh has physiotherapy twice a day, seven days a week.  We do one hour session in the morning and a further one hour in the evening.  Niamh works really hard with her physios, her dad and her mum every day and, although her muscles do get very tired, she does not complain too much.  We all try our best to keep the exercises interesting for Niamh and to make them more like play than work, insofar as possible.  It is hard for a five year old to do so much work every day and she has been very brave about it all so far.  Our house is now packed with exercise balls, mats, physio benches and other equipment for Niamh, the next requirement being a treadmill!!  Niamh will need two sessions per day for at least six months and further physio for another year as a minimum.

Niamh started to go into school for a couple of hours each day this week and was absolutely delighted to see all of her buddies.  She got a great welcome from all of her classmates, her teacher Miss O’Sullivan, class SNAs Fiona and Gillian and indeed from everyone in Johnstown.  There was great excitement and a huge amount of hugs given in the school yard when everyone saw Niamh arrive back to school in her purple wheelchair.  Everyone was so kind, offering encouragement and good wishes and this is hugely appreciated.


As the weather improves (hopefully!!) over the next few weeks we will try to get Niamh out and about to exercise in her walker and on her new sticks as much as possible, so we look forward to calling in and saying hello to the many many people who have been so kind and generous to us over the last number of months.  We have uploaded an album of pictures and will upload some videos of Niamh’s time in Bristol (which we could not do while there due to lack of fast internet access) if anyone is interested in having a look.  We sincerely thank you all and will continue to keep you all updated on Niamh’s progress.

17th April - We are still getting settled in at home having arrived back last Saturday night. We just finished unpacking today! Niamh is doing very well with her physio, two one hour sessions every day. Her physios are very impressed with her progress but there are still many months to go. Niamh is very tired after all of the exertion so is still fairly immobile and housebound.

We hope that we can venture out a little more over the next few days as her strength picks up a little, we will keep you all posted. Thanks to everyone for all of the Welcome Home messages, cards and gifts, you are all very kind.

13th April - Last post from Bristol!! Discharged from hospital this evening and Niamh, Dad and a car ful of teddies will be getting the ferry home tomorrow :-) Great physio sessions today and all of the doctors and physios are very happy with Niamh's progress. Can't wait to get home, start the next phase and stop living on microwaved food!!

Niamh is making great progress with her physiotherapy, two great sessions each day yesterday and today.  She is taking steps on her walker and took a few steps on her sticks, with help, for the first time today.  It will take a lot of work over the next few months to strengthen her leg muscles but the operation part of Niamh’s Wish has been a huge success.  Niamh is totally settled post-op now, eating, drinking and sleeping more or less normally again after a couple of weeks of upsets.  Niamh and Dad are looking forward to getting back home to see everyone at this stage.  Thank you all again for your continued support.

Niamh had a lovely visit from her cousin, Aisling, yesterday and loved making and painting her Princess Mirror today, thanks Aisling for coming to see us and for your presents, you brightened up our day!  Niamh got a lovely present in the post this morning also, Peppa Pig T-Shirt, books, an angel to make tomorrow and even a hug!  Thank you Cathie Beare and Simon and thanks to everyone for your cards and messages.  See you all at home soon!

Niamh is fast asleep and dreaming of the Easter bunny after the big milestone of a trip out of the Hospital.  She is very excited about the Easter bunny so we hope she gets everything that she is wishing for!!  We hope the bunny is good to you all. xx

Mum and sisters have arrived over for the weekend and the great news is that we were all able to take Niamh out for dinner to a restaurant today, her first trip out of the hospital since her operation. Niamh had some pain and problems over ...the last few days but that has all been resolved now and she is in great form again. Spaghetti carbonara and chocolate ice cream were the first non-hospital foods in two weeks and Niamh loved them!!

Fantastic day for Niamh today, 2nd April.  She had her first physio session at 10:00 this morning and put weight on her legs for the first time since the operation.  Everything went much better than expected according to the two physios and we can see an amazing improvement already in the way Niamh stands and in her ability to put the heels of both feet flat on the floor. 

After the first session I was advised that Niamh could have a lot of pain but there was none:-0 Absolutely delighted with her progress and the second session went just as well this afternoon.  New splints for Niamh's feet arrived today also which will be a big help.  Niamh will have two sessions of physio per day now from today until we come home.  Tired girl going to bed tonight but hopefully will sleep like a log.  Goodnight from Bristol, after a very happy day!

Niamh is fast asleep in bed and had a pretty good day today, 1st April  Her biggest dislike is taking the medicine every few hours, painkiller, paracetemol antibiotic and a medicine to help numb where the nerve endings were cut.  I am looking forward to first physiotherapy tomorrow morning at 10:00 with Rachel, Niamh isn't!!!. 

She is mostly back to her cheerful self now and was delighted to have mum and two sisters over for the weekend.  Looking forward to them coming over next weekend already!!  All Niamh really wants to do is go back to school and see all of her friends, so hopefully that will happen in about three or four weeks.

The big day got off to an early start as Niamh had to be woken at 06:00 to be given her first painkillers and meds and to be generally poked and prodded.  She took it all in good spirits and fell back asleep for about an hour and a half.  No breakfast today as fasting since midnight so not overly happy about this.

Demi the “Play Nurse” came along with a pretend oxygen mask and let Niamh play with it for a while, putting a strawberry smelling essence on it. A great idea, so that children will feel more comfortable when being put under later in theatre.  I have to say that mum and dad are genuinely incredibly impressed by Niamh’s bravery and good humour throughout the last few days.  There has not been a single whine, moan or complaint despite all of the tests and despite being in what must be a very scary environment for a little five year old girl who has never had to stay in hospital since she was born.  Niamh always has a smile on her face and brings a smile to the faces of others.  We are very proud of her.

Niamh was taken down to theatre at 11:00 and Demi joined us again to put strawberry essence on the real mask.  Niamh was totally comfortable with it following the preparation work which Demi had put in earlier.  A few puffs from Rupert Harris, the anaesthetist and she was gone at 11:29 and ready for surgery.  We were told that she would be back out at around 18:00.  Deirdre and I went for a cup of coffee and a Danish and then Deirdre caught up on some sleep.  We have a room in the hospital which is fantastic; unfortunately there is no internet available at all in the hospital.  Dad went out to do some grocery shopping and came back to the room for lunch and caught up on a few hours sleep.  The phone rang at 17:30 and we were told that Niamh was out of surgery and we could come down to the recovery room.

Kristian, the surgeon went through the details with us and we are delighted that the operation went perfectly.  We stayed in the recovery room with nurses Nick and Julie who were great at looking after Niamh and ourselves.  Plenty of English v Irish banter with Spurs fan Nick.  He mentioned the rugby so I had to mention Ray Houghton and the cricket and we called it a draw!

Niamh was then wheeled up to the High Dependency Unit back in Niamh’s Barbara Russell Children’s Ward and that is where she is staying tonight.  She is still sleeping, although has to be woken up every hour for check ups.  Kristian checked up on her again before he left for the evening at 19:30 and is very happy with her.  He has done fantastic work and is very dedicated, seeming to work 12 hours every day.  Everyone in the hospital speaks very highly of him.

Niamh will have to stay in bed all day tomorrow and does not really get to sit up until Thursday.  We will have to work hard to keep her occupied for the day, thankfully we brought lots of DVDs to play for her on the laptop.

A huge thanks again for all of the kind messages of support, good wishes and prayers, they are hugely appreciated.  Niamh, Deirdre and myself are delighted to have the operation behind us and hope that it turns out to be a huge success.  Next step, physiotherapy to infinity and beyond!!

Niamh is safely tucked up in bed in Frenchay Hospital after a very long day of lots of tests.  Mum flew in this morning and is spending the night with Niamh in the hospital.  Dad has just finished a late fish and chips for dinner so just giving you all an update on the day.  We met lots of great people in the hospital today, starting off with Vicky and Demi for a pre operation assessment this morning when they checked all of Niamh’s vitals and subjected Niamh to her first blood test!  Needless to say she did not like the needle but a pink Hello Kitty hospital iPad distracted her long enough to draw blood. 

After that we moved on to Simon in orthotics who took plaster casts of Niamh’s legs and feet to make new splints for her which should be ready by Friday.  A quick sandwich for lunch and it was on to Physiotherapy where Lynn did a lot of checking of Niamh’s walking, sitting, kneeling and movement abilities and did some measurements and exercises.

The highlight of Niamh’s day was when we checked into her room in the hospital proper.  She could not believe her eyes when she saw that she had a Disney princess duvet cover and pillowslip but she nearly wet herself when she saw that she had her own TV suspended over the bed, all for herself!!  Needless to say she is a happy camper with this (pictured)

Last tests of the day were in The University of the West of England with Sr. Sue Barnett and Jenny Smith where they performed a Gait Analysis which is a computerised animated version of how Niamh walks on her sticks.  Niamh had lots of sensors attached to her and had to walk up and down between a lot of very high tech cameras which took computerised images of her movement patterns and produced a video where Niamh looks like a walking stick man.  This will be repeated in 1 and 2 years to measure her movement improvements post op.

The surgeon who will perform the operation tomorrow, Kristian Aquilina, then spent some time with us going through what would happen tomorrow with the operation and what we should expect over the next few days.

The big day starts in a few hours and Niamh is fasting from now.  She will be given her first painkillers tomorrow morning at 06:00 and Kristian hopes to start the surgery at about 10:00.  Niamh will be on the operating table for 4 to 5 hours and will then move to the recovery room where Mum and Dad will stay with her while she gets through the groggy post op phase.  Hopefully all will go well and we will update you all tomorrow if we get a chance.  We expect it to be a long day!  Thank you all again for all of your good wishes by text, FB and e-mail, we really appreciate it.  Off to bed now for a few hours sleep.

Happy St Patrick's day and thank you all so much for your kind cards, messages and good wishes. This time next week we will be in Bristol getting settled in for Niamh's operation and a month of intensive post-operative physiotherapy. It is all thanks to your help and support and we look forward to keeping you all up to date with good news on Niamh's progress over the next few months. Thank you all so much again. xxx

Since first hearing last June about the opportunity to travel to St. Louis for Niamh’s SDR operation,  we have been working flat out on getting approval from St. Louis confirming that she was a suitable candidate for the operation and on raising the funding to proceed.  We were delighted to receive their approval in September 2011 followed by an operation date of February 21st 2012.

Before Christmas, in the late stages of our fundraising drive, we discovered that the Frenchay Hospital in Bristol, U.K., had recently commenced performing exactly the same SDR operation and physiotherapy follow up to children with Niamh’s condition as is carried out in St. Louis Children’s hospital, USA.

Tom, Deirdre and Niamh travelled to visit the surgeon, Mr. Kristian Aquilina, and his team in Bristol where Niamh had a full evaluation and assessment for the operation.  We were very impressed not only with Kristian and his team but with everything we saw and heard whilst there, including their brand news state of the art children’s ward called the Barbara Russell Unit.

We did a lot of thinking over the Christmas period about what would be best for Niamh if we got approval from Bristol for the operation.  We had to weigh up the pros and cons of St. Louis versus Bristol;
- both hospitals and medical teams are excellent.
- Kristian worked with the team in St. Louis to perfect the operation before commencing the same procedure in the UK.
- financially there is not a huge difference in overall cost
- there is a much longer history of the procedure in the USA
- geographically Bristol will suit Niamh and the family better.

We were delighted when Kristian telephoned us during the week and confirmed that Frenchay Hospital could offer Niamh a date of 27th March for the operation.  We have decided that proceeding with the operation in Bristol will be the best option for Niamh.  Obviously geographically the travel will be a lot easier both during the operation and for the many follow up visits which will be required over the next couple of years.  Being in Bristol will also mean that Deirdre will be able to be there for the operation and return each weekend with Niamh’s sisters to visit in the weeks following the operation. This would not have been possible for us in St. Louis and we are sure that the presence of her family will be a huge emotional boost for Niamh.

The only difference in the way the whole procedure is carried out in Bristol versus St. Louis is that the operations which are required on Niamh’s legs to lengthen her muscles, hamstrings, tendons and heelcords will be carried out six months after the spinal operation (SDR) whereas these procedures are carried out the week after the spinal surgery in St. Louis.  We feel that this time gap will make recovery from the spinal operation easier for Niamh and will let us see exactly what improvements come from the SDR before the orthopaedic surgery.

We contacted St. Louis last week to let them know of our decision and to thank them for their fantastic support to date.  They told us that our decision made perfect sense and they fully endorsed Kristian’s excellence while he worked with them in St. Louis and gave the Bristol team and set-up their fullest seal of approval, which was greatly appreciated by us and helps to put our minds totally at ease following our decision.  They have a long waiting list for the operation so Niamh’s February slot was filled immediately by another child.

If any of you would like to know more about the SDR in Bristol, we will be posting information and links on Niamh’s website.  We have received many contacts from the parents of other children with Cerebral Palsy Spastic Diplegia looking for information about the SDR operation. The fact that it has now become available in Bristol is fantastic news not just for Niamh but also for the many children who will follow after her and will now have the choice of not having to travel so far.  We are currently aware of another Irish girl booked for SDR in Bristol at the end of January and of an Irish boy in April. We also know of eight other children travelling to St. Louis over the next few months.  There could be more that we are not aware of.  Who knows, perhaps our own health service might even offer the operation at some stage in the future and stop the need for so many Irish families and children having to fundraise and travel abroad for life changing surgery!

If you have read this far, thank you so much for your interest in Niamh and for your great support to date.  We will be keeping everyone fully up to date on Facebook and here on www.niamhswish.com both in advance of the operation and when we come home.  Thank you all once again so much.  We could not have got this far without all of the fantastic help and support we have received from everyone and Niamh especially thank you for making her wish come true!