Reaching One Year Post OP

In October we received a brief visit from Abigail's SDR twin, Pola and her family.  It was lovely to have them all stay in our home and to watch the children play together. Pola has also made amazing progress, and happily moved walked around our home totally unaided. We will look forward to March and the SDR party to see her and many, many other children who have benefited from having had the SDR surgery.

Abigail continues with her physio, both at home and with horse riding and aqua therapy. We are giving particular attention to work on developing her core muscle strength in the form of sit-ups and work with the tumble boards.

We practice backwards walking on the treadmill but also do plenty of side walking. More recently we have begun to hill walk!

High Kneel football dribbling

Door Slides

We Imagine Falling out of a burning high storey building backwards whilst protecting a baby between chest and knees-Improves back strength

Walking in a circle on bottom without using hands

Abigail's words of wisdom - when Physio is hard

She is certainly getting much stronger, don't forget her body has to compensate for 9 years of not being used in the manor it is now able to tollerate. Strength takes time and much energy. It is a slow process but the results speak for themselves.

When Abigail started back to school in September we had bought her a pair of Dolly Style Shoes. Sadly these proved to not be supportive enough and she was rolling on her foot, causing her knee to turn in, causing a knock on effect all the way up the leg to the hip. So we changed to a trendy 'Kicker' shoe giving lots of ankle support which she continues to wear her pollywog inside. She had a similar problem with her trainers and so these too had to be replaced with something higher which provided a better ankle support to the foot. Abigail was delighted with these especially when her friend at school owns the same!

I have tried to encourage as much unsupervised walking using her crutches within the home in order to promote her independence. She needs to learn that someone can't always be behind her.  She lacks confidence with not having someone with her as she is scared of falling.  When she does so it is generally a backwards fall and so we are working on physio exercises to counteract this. 

We have also noticed an improvement in Abi's ability and own want to feed herself although this does depend on the type of meal and it's consistency and texture. She has also made progress in her self help skills around toileting. We are now trying to give her plenty of opportunities to balance and wipe herself and pull up her own underwear. With time and practice and patience this will improve further. 

To celebrate Abigail being one year post op she chose to have lunch in a curry house.

It was very special and we are so proud of all her achievements over this last year and the people that have helped her realise her dreams. It's not been an easy year watching her struggle but all the results prove that it was worth all the blood tears and sweat to get her to this level. She will continue to make progress with further hard work.

This Christmas, a little early, Abigail and her Sister became parents to Jazz (male) and Tinkerbell (female). The kittens were only 7 weeks when I collected them. It was Abigail's paediatrician who recommended some time ago that Abigail would benefit from having a pet. Hopefully this will help with her anxiety issues and possibly even reduce the ritual of grinding her teeth. 

She certainly loves Jazz and lavishes him with kisses and affection, in turn Jazz purrs away. 

Abigail often refers to Dr Park as her 'God' and someone she wishes 'to worship'. It is difficult for us to understand how she perceives the tools this man has given her, in order to change her future, but she has so much respect and admiration for him. She is a totally changed little girl to the one we took to America who generally used a wheelchair and was only able to walk very short distances in a kaye walker. Back then she could only dream of being on her feet all day at school, of being able to get up from a chair or sit cross legged on the floor in line with her friends during assembly. Now all these things are possible and she radiates happiness. 

And so we say goodbye to 2011 and we open the door to 2012 and all it has to offer.

10 Months Post Op

On 30th September Abigail took part in a sponsored assualt course at School. She has done this each year. This year however, there was a massive difference. In order for Abigail to be totally independent she did not crawl on her hands and knees under chairs or under netting where she would need help getting from the floor to standing again, she did laps around the course on her crutches and she did very, very well. How she feels when doing this is written all over her face with the most enormous grin. Her school friends chant her name repeatedly giving her the determination to carry on. But she never forgets those who made all this possible as she does her rendition to Cold Play's 'Fix Me.' These days Abigail amends the words to 'you have fixed me.' Thank heavens it was a beautiful late Summers Day and we had the sunglasses on to hide our tears of joy and pride.

We have managed to continue with the half hour horse riding albeit with bribes. Abigail has been horse riding at the disabled centre for years which is fantastic physio. The problem is it doesn't feel special for her anymore because she's been doing it for so long. The centre did want to discontinue her sessions due to her lack of interest but given the importance of such an activity during rehabilitation, a letter from her physio to the centre has secured her place until the end of the academic year.

This school year she has also commenced swimming with her year group, but sadly only about 20 minutes in the pool once you've allowed time for changing. She seems to enjoy this and of course this is in addition to the aqua therapy she receives nearly weekly with her private therapist. A thoroughly good work out.

My only new, but very significant purchase has been walking reins. Available from www.crelling.com I purchased the adult standard walking reins for 9 years plus. These have been an absolute godsend. When we go to the Mall Abigail had not wanted to walk using her crutches she had wanted to walk totally independently, which is great but required her career to not take eyes off her in case of falling. You must understand for Abigail it's a long way to fall onto a hard surface, plus she feels embarrassed. So I got these reins with the intention of still being able to provide high supervision but it allows Abigail the freedom to walk independently and for the carer to at least be able to look in a shop window! I was nervous as to how she would react to these as in my day all toddlers wore them, and Abigail does not want to be compared to a toddler. They were presented to her positively and she responded well. We hide them under her clothes so that only the back strap is visible for holding. At school they also seem to have gone down a storm as they are enabling high supervision to save a fall and are felt safer than the crutches that another child could knock at any time.

We have been finding that Abigail's knee has been turning inwards on one leg. It is thought the reason this is happening is because of her new girls dolly style shoe, not providing enough ankle support, which in turn has allowed her foot to roll (pronate) causing a knock on effect all the way up her leg to her hip. Sadly she has had to stop wearing these and they have been replaced by a funky shoe/boot style by Kickers. We are even going to make these a little more trendy by getting some sparkly laces. It was instantly noticeable that her walking immediately improved with the change in shoe style. we also have a similar issue with her trainers from Clarks. It seems footwear with laces provide a much deeper depth thus providing more stability for the ankle so we now have to buy another casual sport footwear to replace the velcro trainer. Both are worn in conjunction with her polliwog shoe insert.

It is noticeable to see how tired Abigail is by the end of the week. Obviously now she is on her feet all day at school, which she absolutely loves, and is great but by the time Saturday morning comes, for aqua therapy or physio with me we have to contend with the weekly moaning, groaning and arguing that she doesn't want to do it.

I met with another Frenchay patient SDR mum. The time literally zoomed by as there was so much to cover. I can't help but feel so excited for these families knowing that their lives will be changed forever from the brave decision they have made on behalf of their child. I do hope I am of some help to these families as they wonder what the weeks and months ahead will be like. The highs, the lows and the juggle between normal every day family life and chores. There is no doubt about it, it is hard, particularly when you have a younger demanding child as well.

8 Months Post Op, reaching 10 years of age & major progress!!!

During this last month Abigail completed Year 4 of School and it seems everyone needed the imminent break. We have spent a lot of time using the area of green at the front of our house. Firstly because it's nice to get out and have some fresh air but also because walking on grass is a huge challenge, much more difficult than walking on flat surfaces within the home. We walk away from our home in one direction and the return trip is doubly challenging because its down hill. This means she has to control her walking very carefully so that it doesn't develop into an uncontrolled run. If she doesn't keep fairly close to the railings she has a sideways slope down into the woods to contend with as well. Walking outside she also has the added complexity with sensory changes so its very, very different to walking within the safety and confines of a building or home. We soon got into a routine of counting how many steps she could manage without losing her balance before having to count from one again. To date she has managed to get to 48 steps, which is fantastic. There are so many things I wish I could share via video with you but I can't give the high supervision necessary and be a cameraman!

Footwear is another area that has changed dramatically. Abigail used to have to wear these fiberglass splints everyday to support her foot and keep it at a 90 degree angle. These were horrible and made her feet so sweaty. In heat it must have been horrendous, plus you needed an appropriate shoe, often 2 sizes bigger than her actual foot. It had been nigh on impossible to get girls shoes to accommodate the splint so she had spent the last 5 years in boys shoes.

And now she is able to just wear a shoe insert and this Summer was able to wear these sandals and has now  got her first ever girls school shoes!

During the holidays we went to Spain. I debated long and hard about whether or not I should take the wheelchair. My main worry was that if we went somewhere where we have previously been which had a water park and a zoo combined, would she be able to manage the distance walking in the intense heat. To equate for you it would be like expecting an able bodied person to run a marathon in 40 degree heat. Could you do it and would you want to do it? So I made the decision to take it and if it never got used then that would not be a problem. Abigail was disgusted with the idea!!! We got up at 2.45am to make our flight. We were staying in the same region we normally go but in different accommodation that we had viewed the previous time we'd been over.

That evening our friends (The Hubbards), daughters who live there, were performing in a Carnival. They were desperate for us to see them, the only problem being that this carnival didn't start until 9.45pm. In Spain it's a way of life to have a siesta in the afternoon but Abigail in particular is utterly against this idea and seems to think she can keep going no matter what! Thank Goodness that she did manage to get in a 30 minute nap before the family arrived to see us. I presented Abigail with a Birthday present, which was a Maxi Dress. I thought I better give this to her at the beginning of the holiday so it could get some wear. She was delighted and chose to wear it for the evening. It was her first dress since deciding to ditch the 'boys image' and she'd been on and on at me to get her one.

We decided that we would walk from our villa to the seafront to get dinner and then watch the Carnival. It would have been too far for Abigail to manage walking and even Talia was moaning her feet hurt and of course despite it being evening it was still 30 degrees. So, much to Abigail's disgust she was in her wheelchair for the walk there. She needed to be. We have to be careful with how we portray the "chair" to her as there are always going to be times in life when she will need it. I anticipate that if Abigail gets a serious chest infection for instance, the first thing to suffer will be her mobility and she will need all her reserves to fight the infection, rather than worrying about how to stand and move. We watched the wonderful carnival and got some pictures of our friends girls in all their wonderful finery.

By the time we left it was midnight (dont forgot we'd been up since 2.45am) Abigail's food had kicked in along with her last boast of energy - she decided she would walk home!! She began walking at a mega fast pace on her crutches. She did well coping with kerbs and people with push chairs etc. The streets were very busy. There was a drainpipe pouring water all the pavement and Abi's crutch slipped on the water and down she went. She had cut her thumb and it was bleeding. She wanted to continue. A little further on she fell again. This time she cut her other thumb. She is a determined feisty girl and she was determined to go on. I knew she would never be able to walk all the way but when she is so determined I feel mean to say you must get in your wheelchair. On she plodded with blood ouzzing from her thumbs. I was beginning to get concerned now as we were beginning to leave the lighting of the town behind us, it was dark and the pavements now were narrow and not always in good condition. Down she fell again, this time cutting her forehead open. I didn't know how serious it was as it was bleeding so much but I wanted to do was keep her calm amongst all the panic of the Spanish rushing to our aid trying to help so I put my face close to hers and spoke in a soothing voice while we got her to her feet. She wasn't crying but she was shocked. She finally agreed to get in her chair. Luckily people had helped by supplying us with tissues so, as we dabbed at the wound we could see that it was the tiniest of cuts. It was a sad lesson for Abi to learn and I'm just glad her injuries were not any more serious following 3 falls and even they were with high supervision. I'm just glad it was me that was supervising her or I think I would have blamed Tim for not watching her enough. I didn't take my eyes off her, yet each time it just happened so fast I was unable to help save her.

During our holiday, on August 16th our little girl turned 10 and became 8 months post op. She was so excited to be in double figures. We lunched with our friends, the Hubbards, and their three beautiful girls, Katie, Rosie and Sabrina.

Later, they joined us at our villa for a swim followed by Birthday cake. Abigail was so happy, and it was a marvelous day.

The holiday, really was a holiday. After physio of an hour long, practically every day for the last 8 months, Abigail and I had a full two weeks off. Due to the heat Abigail did very limited walking whilst away. After that first evening of falls we tended to drive to the sea front and Abigail would walk from the car with her crutches to the chosen restaurant of the day. She went in the pool daily and would use her ability to speak Spanish to talk to the other residents. There was a massive change though to Abigail's confidence and ability in the water. This year she was able to float around in the pool with just the assistance of a woggle. It was a deep pool that even i could not touch the bottom in. She changed position from front to her back with ease. Before SDR Abigail would never have been able to be left In the water like this with us watching from the edge.

Abigail is quite keen to be able to swim underwater and does practice!

Talia also mastered her ability to swim underwater.

On our return to colder weather back home Pauline Cilifford from TrueLove Cakes delivered the most beautiful Katsuma, Moshi Monsters Cake. We were astounded with how much work Pauline must have put into it and we are so very, very grateful for all her effort and kindness.

We took the girls to a theme Park; Drayton Manor. We had never been before so didn't know how big it was ie how spread out it is in order to know if Abigail would be capable of walking around it. She didn't want to take the wheelchair, so we didn't take it. We decided to take the walker and crutches. You have to understand that Abigail's endurance levels since surgery have massively increased ie she is able to walk a great deal further in her walker. I didn't think she would be able to cover the theme Park grounds using her crutches alone.

Thought I'd provide a table of the different stages;
Walking holding a carers hand is far more challenging than walking with a walker
walking with crutches is much more challenging than holding a carers hand and
Walking totally independently would be the ultimate miracle!!

A brief reminder; before SDR Abigail mostly used her wheelchair, could walk short distances in her walker and even shorter distances with quad sticks ie sticks with 4 feet.

The day at Drayton Manor Abigail managed to walk all day in her walker. This is a massive achievement. That day she had been on her feet all day and walked the furthest she has ever done in her life. I know this because she wears a pedometer. This helps me understand if she's had a particularly exhausting day or not. She had an awesome day at the theme park going on all the exhilarating rides; roller coasters that take you slowly upside down etc.

Both girls had friends over during the holidays. Until recently Abigail has always preferred the company of adults rather than her peers. This has changed since surgery, with her new found confidence and ongoing development of independence she is finally beginning to interact with other children. This is so lovely to observe. I see a happiness within her that was never there before. She is developing friendships and now loves meeting up with others. This is also very noticeable at School within the playground.

On Wednesday 31 August we were invited to Professor Andrew Whitelaw's Retirement/Birthday party. Prof as he is known to us and many others, is a household name within our four walls. When I was poorly in the lead up to Abigail's birth, he was the man who came and gave us the talk on what we could expect. He was the man who led the new group of Drs on rotation, who had never worked in the NICU unit before, on how to care for babies like Abigail. Baby Abigail's life weighing 536 grams was totally in the hands of these professionals. How helpless we felt at that time. Although i haven't actually seen Prof since NICU days, i send him a Christmas card each year with a photo and a nurse and friend has provided him with snipets of info over the years on her progress.

Abigail walked into the NICU garden on her crutches and greeted him, the man whom she had heard so much about with "Prof, how lovely to see you." Abigail had prepared for this reunion by writing him a letter. He promptly read this out to his audience of Doctors, nurses and Consultants. Kristian Aquilina (neuro surgeon at Frenchay who is now carrying out Dr Park's version of SDR) was also present so it was nice to catch up with him.

It was so sweet I've decided to show you here:

She had also got Prof a little gift in which to remember her by and I was fortunate enough to remember to take a photo in order to show you;

There was cake and speeches and we were all delighted that Abigail was able to be Profs 'Guest of Honor. I know it meant an awful lot to Abigail to meet someone responsible for giving her life. She knows she is very lucky indeed to be on this earth. She gave him a number of hugs throughout his party thanking him for saving her life and I know she meant that from the bottom of her heart. We wish Prof all the very best of luck in his retirement although he is far from finished in the work department.

The following day, 1 September, lots of schools started back for term I but for us it was an in-service training day. We went to visit Max Breen who was Kristian Aquilina's 5th SDR patient in the UK. Abigail walked on her crutches from the car to the ward but once in the ward decided she would independently walk into the playroom. We sat down and had a little chat then it was suggested we go to the Cafe. Abigail decided she wanted to try walking independently all the way there. This was the start of a major break through in her progress. Not only did she walk all the way there by herself with relatively little correction required by me but she walked all the way back too. I felt so massively proud. This is what we have worked so hard for all these months. When I think back to the very first ever independent steps Abi ever managed following SDR, back in April, she had to have absolute total silence with no movement around her. Now, here she was walking down a busy hospital corridor with patients on trollies coming towards her and lots of noise. Truly amazing.

That afternoon we went to Tesco. From the car to the building I held the hands of my daughters; one each side of me. I felt so enormously proud to be able to do this. Once upon a time it would have been what my dreams would contain. I took a snapshot in my head and I know that how I felt at that moment will be with me until I die. Once within the store Abigail walked around totally independently albeit slow and with high supervision but she is walking on her own!!!! I heard a little boy say who had either seen us from our fundraising days or seen us on the TV say to his mum "Look Mum, she's walking now!" That day the pedometer showed that she had walked more steps than at Drayton Manor and most of them were totally independent steps.  It is impossible for me to quantify the proudness I feel of all her achievements.

Later that same afternoon she had physio and I just want to show you her current ability to half kneel. She just collapsed before SDR trying to obtain this position.

The evening of 3 September I got Tim to video Abi at home. Here is the footage.

The weekend 10th September on a trip to the Mall I remembered to get some video footage so I can show you her totally independent walking. Here it is;

As I watch and supervise her it is never far from my thoughts, all the people who dug in their pockets, came and supported events, baked cakes, companies or individuals who made substantial donations or friends and family members, some of whom gave up weekend after weekend, to help us. We can never, ever thank each one of you all enough.

Over the coming months I shall continue with this blog as it is not only a record for you, the reader but for us and most importantly for Abigail when she is grown up. She will continue to progress, get stronger and have the ability to gain stamina for distance. Thank you all for reading.

7 Months Post Op

Abigail continues with physio on nearly a daily basis. Her endurance continues to grow and I love watching her socializing with her friends with her newly acquired confidence. She is enjoying the company of friends now that she has new interests similar to those of her peers.

She tells me that her physio and her appearance are the things that are so important to her at this present time. This is a huge leap forward, after dressing and looking like a boy for the last two years! She's even asked her her Dolls House to be resurrected from the garage! I thought this was a thing of the past! She has even begun to wear a skirt to school again.

Both daughters have things in common again and I can see Talia's eager eyes on Abigail's new girl's clothes, knowing that one day they will be passed to her when she's big enough. Last month Abigail even went to drastic lengths and got her ears pierced.

From a Mother's perspective it's like watching an ugly duckling bloom into a Swan. Don't misinterpret that, she was never ugly but that's how Abi felt inside and now she is emerging a much more happier, confident girl and I'm bursting with pride as I look on knowing it's the surgery that has changed her life and we were brave enough to proceed, despite how daunting it seemed at the time.

This week 11 July was Sports Day at school. Abi took part in everything with the help and dedication from her support worker, Jane. It's a good job Jane is very, very fit and into long distance running as it takes an awful lot of energy to help Abi participate to the level she does on days like this. There was the egg and spoon race, sack race, bean bag, skipping, relay, javelin, long jump, and hoop races. Obviously Abigail was slower than her piers but she took part in them all and many times she completed them with class mates and parents chanting "Abi, Abi" and she wore the biggest smile she's ever worn. I was there as usual splitting my time between the two girls, with the paparazzi camera and a voice like a fish wife!! I'm a very proud Mummy and I'm not ashamed to show it.

What fun

This time last year I would have been in a wheelchair

Mums favourite - look at the nice heel to toe walking.

Still need a bit of support but we are getting there.

Today, Saturday 16th July, has been quite a relaxing day. Abigail's Nanny & Grandad came to visit. Abigail completed her physio session first thing in the morning and she then had some well enjoyed, as she calls it, "me time!" on the favouite websites. This lasted quite a long time and I was eager to get her on her feet and active. So I suggested we went for a walk on her crutches outside. She walked, very capably up the close, out the front of our house over all the gravel stones at a very speedy rate. I should add, at this point, that Abigail's NHS physio, only seems to want to support Abigail using her crutches at school during toilet breaks and during physio sessions, as from September, despite me asking to support us in allowing Abigail to use them this term. Hardly what I would describe as supportive and certainly not allowing Abigail to have the challenge she needs in order to progress.

During a phone call from my Sister this evening, Abigail was keen to chat to her. I turned around to see Abigail getting herself off the chair and starting to pace around whilst chatting!!!! After that phone call she wanted to phone someone else and another so she could chat and walk around. After she had completed her calls she continued to walk around the house, every now and again I had to offer a little correction but she was amazing. Her ability to change direction is coming along nicely as is her self correction of balance when she becomes unsteady. Needless to say, Abigail is over the moon with herself. Well done Abigail.

6 Months Post Op

I write today's blog as I often do, whilst Abigail is in her session Of Aqua therapy. I also want to do a general update as to how far we have come on this journey of a life time.

Life has changed so dramatically in this last year; To see Abigail use her walker to get on the school bus in the mornings as opposed to being pushed out in her wheelchair. To see her sat in assembly cross legged in line with all the other children from her class, whispering to her mates as opposed to sat on the side with the staff in her wheelchair.She gets herself from her walker into a classroom chair in the mornings as opposed to either remaining in her wheelchair or sitting in some kind of specialised seating. At home when she sits at the breakfast table having walked there holding one hand she is able to push herself into the back of the chair without me having to lift her.When we go out she wants to use her crutches and walk, previously she would have been in her wheelchair.

To aid physio and increase core strength I have purchased some scooter boards by Tumble Form. This has been fun for both girls to play together or for Abi to work with her private physio Caroline. Of course I too, have been out there on my tummy scooting around, just incase you saw me and wondered who that mad woman was!! We also purchased a wobble cushion, big enough to stand on, to practice balance. Abigail is also doing very well with playing games on the Wii to challenge balance, along with co ordination at the same time.

Abigail can now balance, bend down, pick up a shoe in each hand and come back up to standing maintaing her balance all the while. A huge achievement.

Using a bilbo seat Abi has practiced the following. The running commentary shouldn't need any further explanation.

The other major change is how this surgery totally changes the child's personality and general well being. We always knew Abigail hated being disabled as she used to tell us regularly and we have all shed many tears with her. Those who live in 'disability world' will know it affects the whole family. Husbands go to work and often don't even disclose facts like this about their home lives. Siblings can chose very carefully the friends they bring home, particularly as they get older and are more aware of the world around them. I'm not sure if this is good or bad, but Abigail can no longer remember being in a wheelchair. I remind her because it's important for her to realise how far she has come and how much progress she has made. She has no recollection of the "hard days" in St Louis when we forced her to walk to get some strength in her legs. For me this is a blessing, she can't remember.

Last night (24 June), like last year, we all attended an event at the Colston Hall in Bristol. Abigail belongs to the School Choir and many of the Schools in South Gloucestershire get together to perform on stage. It is supported by Comedy Acts, dancers and musicians. It was splendid and vastly different from last year, when Abigail was at the front sat in her wheelchair. This year she sat rows back on stage and for each song was able to get herself from the seat to standing, again and again. How proud we felt.

I recently asked our little six year old Talia if she was happy with her life and if there was something she could change, what would it be? Her instant answer was that she would change Abigail into  'not being disabled'. She was coming from the angle of not being able to do things like ice skating, all together as a family. Of course I haven't got a magic wand and I can't make this happen but what we can do for our girls is give them the best life, with as many opportunities as possible. We will support and guide them to be the best they can be but most of all I want them to be happy.

It was shortly after Talia said this that an opportunity presented itself. When the unions collaborated together to strike for pension rights, Abigail's class remained open that day but most of the other classes closed. Taila planned her special day with Mummy. We were going to go ice skating! I write this as a special inclusion and dedication to Talia as sadly she misses out on so much due to our family circumstances. My husband, their Daddy works long hours in London coming home each evening at their bedtime, or later, leaving me as main carer and as such it is hard to give two girls with very different abilities the independent opportunities each seek from life. Each evening Talia has to take a back seat as she watches Abigail get total attention during physio, in addition to the extra help she normally has. It's been hard for all of us, I wish I was an octopus with more than one pair of hands or that I had a hologram of myself so Talia gets more of me!

We had a blast skating and by the end of our session we could both skate, nervously around not holding on to each other or the side of the rink. I was so proud of her, and myself, as I certainly didn't think I'd be able to do it!

On the 20 June 2010 Abigail was all over regional TV at breakfast, lunch and tea time ahead of the BBC West Inside Out documentary. That morning I was asked if I would appear LIVE on Points West ahead of the show. I hesitated momentarily because it was a daunting prospect, with no opportunity to fluff lines in order to do a retake. However, all of this is for Abigail and for raising awareness to all those families who are yet to learn of SDR and all the benefits it can provide so of course I had to do it! The rest of the family remained at home, whilst I was supported by my wonderful Julie who has been an absolute tower of strength from the outset of this wonderful journey. I will post the interview when I receive the footage as it was only available on IPlayer for 24 hours after broadcast.

The documentary also revealed that we had met Beau and his family, from Cornwall. The first ever SDR (Dr Park version of the surgery) ever performed in the UK and I feel honored to have met the Britton family. We continue to keep in touch, just as all SDR families do, whether they've had their surgery in St Louis or the Uk. It's amazing to see just how large this family now is!!!

BBC Inside Out West Special 20/06/2011

The following documentary was made by the BBC as part of an Inside Out West special. This was shown on television on 20/06/2011 it shows footage of me in the USA, back here during Physio and also of my friend Beau Britton who is the first patient to have the operation here in the UK.

In addition there are links to the right which will show the programme in higher quality if preferred.

15 - 21 Weeks (4-5 months) Post Op

Shortly after my last blog it was Talia's 6th Birthday. A lovely lady who donated cup cakes for some of our fundraising events during the Footsteps4Abigail campaign offered to make Talia's Birthday cake. Pauline Clifford from True Love Cakes delivered the most beautiful, sparkely, Cinderella cake. Such a kind and generous gesture and it tasted delicious.

The Fat Wheels that we had ordered from the USA finally arrived. In the meantime we had ordered Abigail a non-special needs bike. We are very fortunate that in our local bike shop, Giant, there is a member of staff who has adjusted bikes for people competing in the paralympics. So he was more than happy to help us and agreed that once the fat wheels arrived he would fit them to the bike and Abigail could trial it.

The day we collected that bike is one that will be etched in my memory for many years to come. Abigail was so delighted to have a bike that was not from her 'disability world'. Before SDR surgery she would never have coped with even sitting on a bike without any trunk support; her body would have gone rigid and tense because of spasticity and fear and now here she is without any worry at at all of falling, tensing, or not feeling safe. That smile on her face was huge and my Mummy proudness was brimming.

She has a bit of trouble making the circular motion in order to turn the pedals but she can propel the bike. Given she could do this on her trike we think this issue can be solved with some foot plates and leg callipers. We are awaiting the imminent delivery of these. I am amazed that she hasn't experienced any problems with the ability to operate the brake herself.  A godsend I think! 

During the Easter holidays we took a trip to Amsterdam to meet with our special friends the Podgorski family, whose daughter Pola aged 3 years, had surgery the same day as Abigail. Pola and Daddy Rafal were waiting to welcome us at the airport. As always Pola had a beaming smile and within a few moments the three girls were singing the songs they had sung whilst together in St Louis. Pola had, only days, before got a pair of crutches and she eagerly showed us how well she was doing with her new equipment. 

On route to Amsterdam Tim had discovered that he had forgotten his wallet containing credit cards and more importantly his driving license!!!!! This set me into immediate panic as I had mine, forcing the issue, that I would finally have to, for the first time in my life, drive abroad. I managed this successfully during the visit in a manual car, driving on the wrong side with no prangs. A miracle some might say. I'm sure that my only saving grace is that I followed Rafal everywhere and there was no need for me to read sign posts or make decisions on which lane we should be in etc. All I had to do was follow Raf's 4x4 !!

Back at the Podgorski's flat we celebrated in style with Champagne. This lovely photo was taken by Talia aged 6 years!  Thank you Tali.

How good it was to be reunited with a family we had spent such an emotional month with. Dorota put together a scrumptious lunch and in the afternoon we took a boat ride  through the canals. The sun was shining and it was glorious. It was lovely to watch all four girls together again.

The next day I drove an hour following Rafal's car to a park called Eftling. It was a spectacular place but it was far too big an expanse for Abigail to have walked so she did a combination of hand walking, walker and wheelchair. The Park was so big we simply didn't have time to see it all. I think we were one of the last families to leave.

On our last full day we visited the Poppy fields that were in full bloom. It was utterly beautiful. We've got so many pictures! But here are just a few. 

Next we visited Little Holland, a miniature version of all that is historical and of interest. Again we all enjoyed it. We topped the day off with a trip to a restaurant on the seafront.

When our trip came to an end and we had to say goodbye at the airport, it was hard. Pola was so sad we were going and this really showed in her mood. We had had such a wonderful time and had packed so much in. Yes there were tears but I know we will see them again soon and the next time will be in our home town of Bristol. The moment we got home from our trip Abigail was desperate to get on with physio despite it being 8 o'clock at night. Then she had me posting her physio photos back to the Podgorski's, who we were already missing!!

Abigail is very competent at holding a hand to walk.  In the last few weeks this has just gone from strength to strength.  There is a difference between which hand she uses as obviously she has a weaker side, but she loves walking this way as she feels she is just like every body else.

During the Easter holiday's and having seen Pola with her crutches, we had a physio session with Abigail's NHS physio. I asked if we could have a pair of crutches to practice during physio sessions. These were subsequently delivered to school. The first time Abigail used these she found it very difficult. They are a lot more challenging than using the pods which have 4 feet on them. But I am happy to tell you that today, Sunday 15 May, Abigail has walked with her crutches through Marks and Spencers along the downstairs of the Mall, got on the escalator (she loves using these, as of course she never could before in a wheelchair) along the upper level of the Mall to Yo Sushi. She, and even Talia, enjoyed lunch there and then Abi walked with her crutches all the way back again and more, to get to the car. Talia had the walker on stand-by the whole time but Abigail refused it. She did so well, it took so much stamina and she was totally determined. Two weeks ago she could not have managed this. I am so enormously proud of her.

Walking With Sticks

I am also happy to report that Abigail's manual and electric wheelchair have now been relocated to the garage. No one, unless in similar circumstances, can appreciate what a loaded sentence this is for me to write. I have watched so many mothers of children with Cerebral Palsy who have been to St Louis and in the months that followed, they've posted on Facebook that the wheelchair has been put in the garage. I used to read those posts with envy, hardly daring to believe that one day I would write that too but here I am and what a flippin' fantastic feeling it is. Obviously, it will need to be resurrected for long distances or if Abigail is unwell but on a general day to day basis it is not required and hasn't been for some time now!

Generally Abigail has aqua therapy once a week and a physio session once a week both with her private physio Caroline.  She receives only one session every three weeks from her NHS physio. All other sessions are done with me at home and we tend to do something every day. She also continues her horseriding sessions once a week for 30 minutes. Abigail is able to take some independent steps as I think I've previously said on the blog but as Tim doesn't get home until late I don't think I've managed to capture much of this on video.  I promise I will for the future.

On the physio front we had named Abigail's legs Bob and Mollie for the purposes of learning the motion of swinging the legs, alternately and independently of each other. She has changed the names of the legs so many times that I've gone totally do dally in trying to train her brain for this action! It is an instinctive action in you or I but for a child like Abi it is extremely difficult. We sit on the therapy bench so her feet are above the floor. Before surgery Abi would only have been able to swing both legs up and both legs down at the same time. I am trying to train her brain to learn to swing only one leg, whilst keeping the other leg absolutely still. We are getting there. And I now catch her practicing this in the car or when she is sat at the table. It's all about the brain learning to isolate the muscle groups. When we are very competent at this we will move onto the alternate swing of the legs.

Foot Tapping

Bob & Mollie (Possibly)

Abigail has also learnt to kneel and play catch, maintaining her balance very well. Not a hope she would ever have been able to do this before SDR surgery.

Physio Session

Abigail upped her own speed by 3 notches on the treadmill. She now walks at a speed of 2.0km/hr she does this in two sessions of 5 minutes each. I do think she has pushed herself a little too far because we are back to her moaning all the time on it but she refuses to let me reduce the speed and as long as I act like her personal trainer and encourage her the whole 10 minutes she manages to get through it!!

As you may know we were filmed in St Louis for the Inside Out West documentary. Part 1 was aired in November before we went to the USA and part two will cover the surgery itself, rehabilitation and a much broader picture nationally of the SDR subject. This is going to be aired in the next three weeks and I will put out a reminder on Facebook nearer the time. Of course Abigail's rehabilitation is still on-going but it should give a very good flavour of what this whole subject is all about and the uproar it has caused amongst parents because we are so very far behind in this country.

The other major news I have is that after about two years of Abigail wanting to look like a boy, from her short cropped hair through to boys pants and socks she is finally wanting to look like a girl again. I think a lot of this has to do with the fact she feels happier within herself about who she is. She's no longer sat in a chair all day wanting to fade into the background and not be noticed. She is really enjoying being upright and mobile and of course she's growing up. I never thought I'd see the day she would wear tights or something decretive in her hair! She did point out to me the other day that she doesn't cry any more about being disabled and she's right, she hasn't cried since we were in St Louis when gaining back the strength to stand was so hard for her. Dr Park has given her so much and there is still so much hope about what the future holds. We are all so happy with how things have progressed and are eager to see what lies in store for the next 7 months of rehabilitation. We will certainly give it our all.