sdr4erin

Happy 1st Anniversary

2011-09-28T20:48:00.000+01:00

HAPPY 1st ANNIVERSARY ERIN !!!!!

Can you believe it is a year today Erin had her amazing life changing operation in ST Louis Children's Hospital Missouri!! Where has the time gone??? We can not believe it already!! As you have all seen Erin is making fantastic progress every day since her operation!! She goes from strength to strength everyday now standing walking & riding a normal bike all by herself. This would have never been possible on our NHS & is not the future they had set out for Erin.

She has now started infant school & is extremely happy, bright & confident little girl. There is no stopping her any more!! Such a change from last year. Although Erin has always achieved what she wanted before she was always a little wary of what she could achieve now she oozes confidence in everything she does & there is just no stopping her any more. She is right up there with her peers & has made some amazing friendships already & even a possible boyfriend sorry guys!!

A year on we still think of every single person who helped us make this possible for our little girl & we feel truly blessed to have you all in our lives. Without you all this would not have been possible. So to all of you we would like to say

HAPPY ANNIVERSARY !!!

Sending you all loads & loads of love, our hearts & thoughts always.

THANK YOU ALL SO MUCH !!!

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These legs were made for riding!!!

2011-08-30T21:46:00.001+01:00

Erin riding a normal bike for the first time!!!

Hello everybody!! How are you all?? It has been a few months since our last post so here is a little up-date on my progress. It is with great excitement that we have to say that I can now ride a normal bike with stabilisers!!! I am so so proud of myself & can not believe what I have now achieved just under 1 year from my SDR Operation. My parents & family are so proud of me & I love it. I spent a few hours on my bike today for the first time & I only had one small fall with no injuries!!!My mummy has promised me I can go out on my bike tomorrow & I can't wait. My disability trike has now been made redundant as I can balance myself perfectly with my new bike!!

Please keep watching this space. Next week I start Infant School another big mile stone in my already incredible journey!!

Take care everyone be back soon!!!

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These Legs are made for walking

2011-06-24T21:48:00.003+01:00

One Proud Little Lady & Princess!!!

Hello everyone. A few months have passed by now & feel its time for an update!! and what an update we have for you all. I am now standing & walking short journey's all by MYSELF INDEPENDENTLY!! GOOD BYE CRUTCHES!!!I am able to walk around my house freely without any support!! I am truly amazed at what I can do & my parents are so so proud of me as I am of myself. I could not believe or imagine just what I could do or accomplish after my SDR Procedure but now there is no stopping me!! I can not wait till Monday when I will walk into my Pre-school for the first time all by myself. Now all I need is to continue walking & it won't be long before I have my Big Bro & Sis running after me. I just keep on walking now everywhere!!

A GREAT BIG THANK YOU TO THE AMAZING DR PARK for changing my life. He said I would be walking in a year from my procedure but I am now walking 3mths earlier. I realise I still need to walk more to build up my strength but I know now that you can achieve when you really want too & that dreams do come true!!

LOVE TO EVERYONE WHO MADE THIS POSSIBLE FOR ME!! A MILLION THANK YOU'S TO EVERYONE!!!!

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Keep on moving!!!

2011-03-22T21:48:00.007Z

Brand New Crutches!!

Hi everyone how are you all today??? I am fine & doing well. Having lots of fun in the garden with the gorgeous sunshine we are having at the mo.

Today at physio my physiotherapist gave me some new bright yellow crutches to use instead of my canes. They are much lighter than my sticks making it easier for me when walking. This is also the next stage for me moving closer to my goal of independent walking. I tried them out with my physiotherapist but I was very unsteady & really didn't have the confidence to trust my new sticks just yet. I didn't really have a good physio session in general today. It was not the best time for me but however a few hours later at home I decided to give my new crutches ago.

My dad recorded me but unfortunately it was just too big to share with you all but my mum did take a shorter video on her mobile which we have put on here for you all to see. I really really surprised my family & they are so proud of me as like I said I only had the crutches roughly 4 hours & now my confidence is coming on leaps & bounds with them. I'm also not so scared of them as I first was. Mummy tells me I was exactly the same when first using my red canes so I will keep on going as I am gaining more & more confidence everyday!!

Take care everyone. Be back soon !!

xox xox xox

I Like to ride my tricycle!!!!

2011-03-08T20:48:00.001Z

Erin riding her brand new tricycle!!

Hi guys!! hope you are all well. Last week I received my brand new red tricycle & I couldn't wait to get on it. Whilst on my new tricycle my mummy recorded this little video of me. We all thought it's a fantastic little video & one we would like to share with you all. It just shows how well I am doing after my SDR treatment in the USA. This is my first time on a tricycle here & I absolutely love it. Plus now I have another way of making my legs stronger & building up my muscles for walking independently. It is also so much fun.

My independent standing is also coming a long really well & I am now standing much more steadier than I ever have done. I truly impressed my physiotherapist when I showed her today. My walking is coming along slowly too but I am so getting there. I am also a lot more comfortable with my new legs & posture.

We hope everyone is well & you are all having a good year so far. We look forward to updating my blog again soon. Take care guys & thank you all for your love & support.

xoxoxoxoxoxoxoxoxoxox

My Birthday 21st February 2011

2011-02-25T10:57:00.000Z

Erin's 4th Birthday

Hi everyone it's been awhile so I'm here for a wee update.

I celebrated my 4th Birthday on Sunday with my family & Pre-school friends at a lovely place called the Arena Leisure Centre. I had a big bouncy castle with a slide, a wooden slide, lots of foam shapes & trikes to ride on. I couldn't quite manage the trikes but absolutely enjoyed the bouncy castle. My actually birthday was Monday & I shared that with just my family which was fantastic. I got totally spoilt & had loads of fun. I was a little disappointed when I my birthday came to an end.

I am still having physio & growing stronger & stronger each day. Need to practise my walking a little more. I have been fitted to a disability tricycle which I loved going on & should be receiving any day now. When I went on the one at physio I just flew all by myself. I can't wait to get my sparkly red tricycle & then I will be able to build my strength up even more.

Take care everybody!!!

BE BACK SOON!!!

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Three Months on after SDR!!

2011-01-19T10:51:00.018Z

ME WALKING WITH ME CANES!!!

MY FIRST STEPS!!!

Since my first steps in the swimming pool on Sunday I have been working really hard in trying to walk by myself at home. My mum & I practised yesterday but I was a bit wobbly however I told my mum if you practise you learn & if you don't practise you don't learn!!! So I've been practising & this is my video of me walking today. I managed to walk four very controlled steps to one of our sofa's. I was so excited & wanted to share it with you all. Its only been 3 half months since my operation & we are all over the moon with my progress. I will soon be running my family ragged & can't wait!!!! xox xox xox

We are truly sorry you have to view the videos side ways at the moment by rotating them for some reason we can not get Erin's special moments on here. We are looking into this now & hopefully we will be able to amend soon. So no more crooked necks!! Thank you xx

The First Mile Stone

2011-01-16T20:23:00.001Z

Me & Me Homies!!!

Today has been a truly amazing day. I have achieved a huge mile stone in my journey after having SDR. Mummy & Daddy took me swimming today with my brothers Joshua & Jamie & sister Chloe. Nanny Eves also came along & whilst we were there I took my first INDEPENDENT steps. Whilst in the the pool with water up to my waist & without my arm bands or help from my family I walked 20 steps in the water all by myself. I managed to walk half way across the pool independently & if that wasn't enough I was also able to stand by myself for 30 seconds at a time in the water. I am so proud of myself as is my whole family. After this all I wanted to do for the rest of our time in the pool was keep on walking & standing by myself oh & going on the slide. Wow what a great & fantastic time we all had at the swimming pool.

FANTASTIC!!! WAY TO GO PRINCESS!!!! xox xox xox

HAPPY NEW YEAR

2011-01-14T15:37:00.001Z

Christmas Day !!!

Superstar!!

HAPPY NEW YEAR!!!

We are so sorry its been awhile since the last update but with the Christmas Holidays & New Year things have been a little hectic here at home with my brothers & sister. We all had a truly wonderful time & received lots of wonderful pressies. We were all totally spoilt.
Things are going really well for me at the moment. I keep getting stronger & stronger everyday walking lots & lots. I am having Hydro physio (Physio in a swimming pool) & physio everyday. I am so much more stable on my feet & my balance is improving everyday. I am now a lot taller than before as I have totally straightened out. People think I am having growth spurts but truth be know I'm just straighter. My confidence is also growing as I slowly realise now that I can do so much more than before my SDR operation. I am slowly learning to stand all by myself & my walking is becoming stronger & much quicker everyday.

Now for some news on SDR coming to Britain!!

NICE have now agreed that SDR does offer some benefits to people who have Diplegia Cerebral Palsy (but we know that it helps greatly) Yeah!! But we need much much more. The Neurosurgeons who are trying to bring SDR to the UK are still progressing in the right direction and have reached some of their goals however there are still others they need to achieve before launching SDR here in the UK. As everything it is a timely process to achieve here in the UK but we will keep following their progress & fingers crossed they will achieve the unachievable. More & more families are looking into SDR in the USA after ours & others stories are coming to light surely the government can not ignore the progress of all the children who have had SDR already from here & those who are seeking this treatment in the USA. We will keep you all up to date!!!

We hope you all had a wonderful Christmas & New Year. Here's to another amazing year!! New Year resolution to be able to walk all by myself!!

xox xox xox

Thursday 2nd December

2010-12-02T21:47:00.000Z

Fun In The Snow

Erin's Snowman

Santa's missing Reindeer

Hi Everyone it's been awhile since the last update but what a day to update Erin's blogg!!! WE HAVE SNOW & before Christmas too!!!How amazing. Erin absolutely loves snow. As you can all see she had a fantastic time out in the snow today & thoroughly enjoyed making her snowman. She is still building her strength up everyday through physio & now hydro sessions at the local hospital pool. Unfortunately she does tend to have her difficult moments & she is still refusing to use her canes. If only she would use them as she would get so much further & so much quicker. At times she is not very forth coming with physio which can be hard & very straining. She can be really really really stubborn. Can't think where she gets that from???lol. As you can see she is SO ready for Christmas & really wants to be one of Santa's reindeer's. We would like to wish everyone a very Merry & Fantastic Christmas & all the best for the New Year!! Loads of love to our amazing family & friends!! THANK YOU ALL FOR MAKING OUR DREAMS COME TRUE THIS YEAR!! We feel totally & utterly Blessed. xox xox xox xox xox xox xox xox xox xox xox xox xox

Tuesday 16th November

2010-11-16T20:31:00.004Z

THANK YOU SO MUCH

We Erin’s parents Jen & Brett would like to say a great big THANK YOU to every single person who has loved, helped & supported us in our campaign to raise funds for our daughter to have a life changing operation in the USA. Without all the love, help & support from you all we totally realise that Erin may not have been fortunate enough to have this operation.

As you are all aware Erin successful had SDR on the 28th September & we would like to inform everyone that she is doing amazingly well, already she has much improved balance & control when walking with help. Although Erin is coming on in leaps & bounds it is still early days & is going to take her awhile to master independent walking but we are all so sure she will fully achieve this in time.

We would like to thank everyone from those who donated, to those who took part in fundraising events & those who were there all the way through with constant & outstanding love, commitment & support all the way

Firstly we must say a huge THANK YOU to our truly amazing family. Their unconditional love & support has been amazing this year & without you all where would we truly be? You have all shown such great strength & encouragement that we were able to draw strength from you all in achieving this dream for our special little girl. You have all gone to great lengths to make sure we got there & we truly did.

To our amazing friends Dave, Julie & little Maxi Johnson. Dave our website guy you have been absolutely fantastic. How many emails?? The website is just stunning & has got the message so out there. We thank you so much guys for the love & support. Maxi just being there for Erin she loves you babe. Julie Erin’s second Mum & boy does she need you. Always in our hearts guys!!

To Aunty Mary & Uncle Alan our advertising gurus & greatest supporters (along with the other family members) THANK YOU SO MUCH.

To all the companies that donated gifts & hampers for fundraising events & to the amazing people & companies who held fund raising events. Keeley, Alex & Victoria Walters (through their sad lose they helped our daughter a truly outstanding family from Surrey), Mick & The Pulborough Bowls Team, The Healing Light (Marlene Woolgar Medium), Woods Travel, Checkatrade in Selsey, Pulborough Tescos (Sponsored Bike Ride), Companion Care Vets in Chichester & The Waverley (Race Night) we thank you all so much & there will always be a special place in our hearts for everyone of you.

To the amazing Sonia our lovely Ford Market Burger lady for helping us to get Erin’s message out there & for spreading our donation cans around Barnham. To all the people who donated car boot items & those who baked we thank you all so much. Also to the organisations that had donation tins Kayleigh Hairdressers (Bognor), Barnham Pharmacy, Angels Florist &, Barnham Beauty.

To our sponsored cycle boys, they rode from Chichester to Brighton & back. The day was extremely hot but you all carried on for our Erin Thank you guys so much.

The wonderful Girls High School Chichester. Wow what can we say? You young ladies are a real asset to any community. You all came together for our little girl & helped raise so much. We will always be eternally grateful. We would just like to say a very special thank you to one special lady Chloe (she knows who she is) always in our hearts.

Thank you to the Lions Club of Chichester & The Chichester Rotary Club who made donations to Erin’s cause. Also, Thank you to the Chichester Rifle club.

We would also like to say a huge thank you to every single person who made money donations through Erin’s website, her bank account & through the post. You are all truly amazing people & we feel blessed to have such great people around us.

We would also like to say a great big THANK YOU to our wonderful children Joshua, Chloe & Jamie who through the whole of this year have shown outstanding love & support for their little sister. They have helped in all fund raising events, sold their toys & have show great unconditional love for her. Nothing has been too much for them & they’ve taken everything in their strides. They have accepted everything that has gone on this year & have just pulled together to help their little sis. Unfortunately they could not come with us & we had to spend 4weeks apart from each other for the first & last time, but not once did they complain & showed such courage which made the whole trip away easier for us all. They never complained once. TRULY AMAZING CHILDREN!!

Finally if there is anyone out there we may have failed to mention we have not forgotten you & thank you all so much. The list is endless of wonderful help & support we have had over this year & we truly know how extremely lucky we have been. There are not enough words to help us express just how grateful & thankful we are but we hope this has helped us express to you all just how grateful & blessed we truly feel.

Watching Erin everyday we know we have done the right thing for our little girl & this operation truly is life changing. No matter what she now has a much improved quality of life & a much brighter future!!

THANK YOU EVERYONE SO MUCH

ALWAYS IN OUR HEARTS
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Wednesday 27th October 2010

2010-10-28T22:27:00.000+01:00

Erin taking her baby for a walk!!

Today we filmed Erin walking with her baby. Now this may not seem a huge thing to many people but Erin has never been able to do this with such control & some distance. She used to kneel crawl when taking her baby for walks before. To us this is a huge achievement for Erin as is wriggling her toes & wrapping her legs round you when being carried. She is so definitely much more confident & steadier on her feet & her balance is coming on in leaps & bounds. Today she also stood independently for 5 seconds another thing Erin was not able to do before having SDR. Her confidence is also growing as she is beginning to let herself achieve more as she realise that now she can actually do it. She is so so proud that she can do things now that she couldn't do before that she is pushing herself that little bit more to achieve so much more. We are all so proud of her & so amazed as she is only 4 weeks post-op & is already making great progress & achieved so much already. Keep watching guys more updates to follow.xox

Saturday 23rd - Sunday 24th October 2010

2010-10-28T22:07:00.000+01:00

Saturday 23rd October on the first Plane!!!

4pm Back at Home Safe & Sound!!!

Hi everyone as you can see we have made it back home to England safe & sound. The flight home was short than the journey going out to America but it felt ten times longer. Erin fell asleep on the first leg of our journey home & therefore she did not sleep well on our over night flight back home. She actually slept for about an hour.aaaahh. It was fantastic to see our wonderful children & family waiting for us at Heathrow. After a cuppa with the family we unpacked & just chilled. Whilst chilling Erin fell a sleep on our sofa at 4pm & that was her till 9.30am the next morning. She did wake a few times but soon fell right back to sleep. We are all glad to be home as there really is no place like home & now we can eat again yeah!! xox

Friday 22nd October 2010

2010-10-22T21:59:00.001+01:00

Erin & Mad Micheal eating Chocolate. Their last physio together!!

Erin enjoying swimming with daddy!!

What a sad day today for us all here. We said a very sad farewell to Hayley, Bill & Harry this morning as they are returning back to England today wish them a safe trip & then a very sad farewell to our lovely Angie in the kitchen. A really super lady who looked after us really well. A big farewell to Carlos a super guy who had us laughing so much. We have the lovely Whitney, Stephanie, Nicki & Richard. Tomorrow tears I feel will flow as they love Erin so much that they nearly kidnapped her to stop her from coming home. We are really gonna miss their smiles & laughter. It was also Erin's final physio today at St Louis Children Hospital with the truly wonderful Mad Micheal. He gave a whole new meaning to physio & Erin is gonna miss him & the others so much. I can just see her now telling her physio well Micheal did it like this. Micheal let me run him over with a bike can I do that to you??lol. Can't see that happening. Once we said our fond farewells to the hospital staff we returned to the hotel & Erin went swimming with daddy. What a great swimmer she is turning into. Later we are off to dinner with the lovely Jones. What a great way to spend our last day here in ST Louis. We would also like to say a huge THANK YOU to the Amazing Dr Park for improving our precious daughters quality of life so much so she will not be needing those canes for long. Look out UK strong willed redhead is on her way back. A huge THANK YOU to all of the Doctors & Nurses who took wonderful care of Erin before, during & after her operation. An amazing service of care & they really do care about the children every single one of them. Then there is a big thank you to Mad Micheal & the entire physio department at the Hospital more truly wonderful people who we are so gonna miss. Erin loves you Micheal. We would just like to say a huge THANK YOU to the wonderful staff at the Residence Inn Marriott. All the staff have been truly amazing & we are gonna miss you all. They have truly gone out of their way to make us feel so welcome. We have so so many fond memories to take home with us & feel so lucky to have been able to make this possible for our daughter. We would also like to say a great big heart felt THANK YOU to our wonderful Children & Family back home for giving us this time to help Erin so so much. We know its been difficult for all but you guys have been fantastic & we have not had to worry about a single thing whilst here. We are truly blessed to have such a truly wonderful family. We would also like to say a huge WELL DONE to our little princess. She has been through so so much & has come out the other end the biggest achiever we will ever know. Life has not been easy for her at all but she has always managed to pull it around to her benefit & achieve anything she wants too. She is truly an inspirational little lady. Now she thanks to St Louis Children hospital & her hard work/determination has the biggest chance at a normal life one where she can truly be just like us. We love you sweetheart so much. We are so looking forward to flying home tomorrow but sad for leaving such wonderful people. This will be our last daily blog but we will let everyone know when we get back just how everything is going. Take care everyone. Love to all that have made this possible for our wonderful little Princess xox

Thursday 21st October 2010

2010-10-22T01:54:00.000+01:00

Erin doing the limbo!!

Erin on a bike!!

We all had a fantastic but sad last night with the SDR families here in the hotel. It feels a little sad as our journey is coming to an end here in St Louis Missouri USA. We can not believe now how well this year has worked out for Erin & the extremely amazing results we have already seen in her after SDR. It truly will not be long now before she is walking by herself. Exciting news from the Neurosurgeon here from Leeds (John) the future plan is to have SDR available in the UK at three places but we all have to realise this will not happen over night but change is so much on the way. He seems very positive & excited about getting this treatment in the UK & on the NHS yeap the NHS along with Neurosurgeon Kristian at Bristol who is visiting Dr Park next month. He is extremely impressed with Dr Park & the whole procedure of SDR from start to finish including the physio & the hourly phone call we parents get when our children are in surgery. Dr Park has said to him that he wishes he could give them the UK patients back to the UK for the treatment. We are so excited for all those families who are up against the battle of trying to raise funds for this treatment here in the USA. Anyways Erin worked hardish at physio today. We knew she wouldn't be great as we had a bit of a late night but she still managed to impress & rode a bike. Way to go little Lady!! We have one more physio left tomorrow which she will be full rested & fighting fit for as she has gotten in an early night. All she wants to do now is go home & keeps asking if we can go now. We then caught up with our wonderful family back in the UK & hung out at the hotel. Hopefully she'll get to go swimming tomorrow after physio whilst mum finishes of the packing!! SHE SO CAN NOT WAIT TO GET ON THE PLANE HOME!!nor can we!! although we have to say we have some great memories to take home with us & met some truly wonderful people here who helped to create those memories. Gonna miss them too. xox

Wednesday 20th October 2010

2010-10-20T23:55:00.000+01:00

Erin's longest walk holding only one hand!!!

Erin & Erica last Physio together!!

Way to go little lady another brilliant physio session with the lovely Erica. Erin worked really hard today & well & truly earned her chocolate milk & kitkat that the wonderful Angie gave her this morning. We are so proud of you little lady & it just shows you can get so much more out of her in the morning. Her walking & balance is so improved & she is so much solid/steadier now. She is able to correct herself if her balance goes really quickly now just look at how well she is doing in her video!!It was her last physio with Erica so it was so sad a we're not going to see her again before we leave Saturday. She couldn't wait to show Mad Micheal & Erica her new shoes. She even wore her splints the whole time without a single moan. Its like she didn't know they were on. Once we returned to the hotel Erin went swimming with Daddy but had to come back as she had a really bad headache. She had a really quick bath & then just chilled on the bed recharging her batteries with some paracetamol. Much better now & it is tea time soon. We are meeting up with the other SDR families for dinner & drinks as Hayley, Bill & wee Harry are leaving on Friday & we are leaving on Saturday. A wee celebration of our time here & a sad goodbye to everyone. See you all real soon in the UK our wonderful children & family. Sunday Morning 9.35am touch down!!!Woohoo!! LOVE LOADS GUYS!!!! xox

Tuesday 19th October 2010

2010-10-20T01:53:00.000+01:00

Erin walking with one hand only to physio!!

Erin standing from sitting by herself!!

Finally we had another fantastic day with very little moaning from Erin. She worked really really hard today at physio & achieved so much. She is now able to stand from sitting all by herself as you can see in the video (sorry a bit of poor shooting but I was gob smacked as she did do this 3 times). She also has much better balancing skills & is able to walk with us just holding one hand. She is doing so well that we have been recommended by her physiotherapist to just encourage her walking with one cane & holding one of her hands. She is so much more steadier on her feet & her balance has come on in leaps & bounds as is her confidence slowly. We are so very proud of her. Well done Sweet heart way to go!! We then took her out for lunch & brought her her very first ever pair of trainers to wear with her splints. It was so weird but fantastic at the same time to be able to put her into normal shoes as Erin has always had to wear pedo-boots since she has been walking. She also forgot she had her splints on too which is fantastic so fingers crossed she'll wear them more now. Once we brought her trainers we picked up some delicious cheesecake from the Cheese Cake Factory for pudding on our way back to the hotel Yummy!! We just chilled. She had a lovely bath & is now in the much needed land of nod!! Sweet dreams everyone!! xox

Monday 18th October 2010

2010-10-19T04:03:00.000+01:00

Erin at Physio today!!

Erin's physio session with Micheal

Every thing went really well today at physio. Erin really worked hard but then Mad Micheal is back & she loves him to pieces. She went on to the biodeck for the first time today (which you can see in the video) she had to kick her legs taking turns on each side to see how much & how fast she could kick out & back. She did really well on this & Micheal said for her age she did fantastically well as usually the three year old can only kick between 60-75 but Erin managed 120 on both legs!! Way to go baby. We then had her new splints fitted so shoe shops here we come now she can have proper girlie shoes for the very first time YEAH we are so pleased but may leave the shoe shopping till we get back. She then had a 11am follow up assessment with the lovely Dr Park. He is extremely pleased with her progress & just wants her now to walk walk walk with straight knees no bending. We also met a lovely British Neurosurgeon from Leeds who is over here shadowing Dr Park & looking into SDR. Fingers crossed this could just be the much needed beginning of getting SDR available in the UK. He was extremely impressed with Erin & the changes that have been achieved for her by her having SDR. We are hoping to catch up with him before we leave Saturday as he is here for two weeks & is very interested in everyones views/comments who are out here at the moment. There are seven families out here at the moment. A total four British children having SDR this very week. Good luck guys we wish you all the best & will be thinking of you all. xox

Sunday 17th October 2010

2010-10-18T02:56:00.000+01:00

Erin & Daddy on the Carousal at the Zoo.

Erin at the Zoo.

What a day!! The weather has been gorgeous (so not looking forward to the weather back home feel it will be a culture shock). We had a fantastic time at St Louis Zoo. It truly is enormous & we still did not get round it all. Have promised Erin a trip back to see her favourite penguins before we come home on Saturday. Hayley, Harry & Bill came too. We took in the sea lion show, managed to get on the train & the carousal which we had not done the first time round. When we came back to the hotel we went to Tuckers steak house for dinner. It was wonderful food but so so much, we are well & truly stuffed. Now in bed ready for our 9am physio in the morning. Also seeing Dr Park for my follow up assessment from after SDR. What a brilliant yet hectic weekend. Love to our amazing family back home miss you guys so much & we will be back real soon!!Big hugs & kisses to you all!!! xox

Saturday 16th October 2010

2010-10-17T05:59:00.000+01:00

Erin & her boys at the BBQ!!!

The Circus!!!

What an amazing day we all had today. The weather was beautiful again & Daddy went off shooting with Bill, Carlton & Arnold (two shuttle drivers at the hotel). They thoroughly enjoyed the experience but daddy is still not feeling to great. Erin went swimming for the first time since having her operation with mummy, Hayley & Harry which she thoroughly enjoyed just a tad too much screaming as she kept turning in to her back & panicked. Once showered we met up with the Leonard/Christies & the lovely Jones for a BBQ. Unfortunately daddy had to return to bed as he has tonsillitis & was feeling really rough. He also did not want to miss out going to the circus after our bbq & hoped a sleep would help. The BBQ was fantastic & a great big thank you to Bill for cooking all the food perfectly. We even managed to feed the hotel staff. We all then went to the circus & what a circus. They were fantastic, amazing & jaw dropping with the stunts they all did. We have never ever seen anything like it & so glad we all managed to go along. AMAZING!!! Erin has now decided she is going to be a trapeze artist & a trampoline artist on the side. It was truly amazing & a great big thank you to Nicki on reception at the hotel who arranged it all for us to go & for free too. The staff here are just amazing all of them. Off to bed now exhausted so night everyone sweet dreams. xox

Friday 15th October 2010

2010-10-16T02:35:00.000+01:00

The next Picaso!!

The only time the tears seem to stop!!

Had a lovely morning just chilling & catching up with everyone back home!!Not a very good day for physio today though. The day started off so well except daddy not feeling well at all. We just stayed in our little apartment in the Hotel this morning. Physio was not till 3pm so we had a relaxing morning. Erin walked down to get the shuttle & truly impressed the receptionist Whitney & Stephanie with her backwards walking with her frame. We changed her back wheels to enable Erin to go backwards & forwards. Well she did so much walking she completely wore herself out before physio. We knew she would but Erin just did not want to stop walking. We made it to physio only to spend the whole time Erin screaming the place down saying she was too tired. The only time she calmed down was to paint & be pulled around on the bum board (like in the video). We think the physio was probably pleased when we left. We then returned to our hotel as Daddy really was not feeling well & Erin was still claiming to be tired!! She is now in bed fingers crossed a sleep!!But she still managed to sneak in a wee cry. Needs her own bed & bedroom now!!Hope everyone has a fantastic weekend. Our last weekend in ST Louis but going to the circus tomorrow night & the zoo sunday!! xox

Thursday 14th October 2010

2010-10-14T23:59:00.000+01:00

Erin at physio today!!

Not a lot to say today but what a lovely day. The weather here has been fantastic & today is a little cooler then what we have had so far. Erin had a great day as we went to Downtown ST Louis & managed to pick her up a toy story top which she just had to wear. There is a cool breeze even a chill today so it was ideal for her to wear it as it has long sleeves. She did really well in physio today with Marilyn. Yeah we have a video!! Erin even asked to do the treadmill today but once on it she soon changed her mind. But she did do well bless her. She is still doing a lot of walking with her frame though around the hotel. As physio was at 2pm today we just came back to the hotel afterwards & chilled. Dinner tonight is stew & biscuits (not the kind of biscuits we are thinking of) put on by the hotel so this will be interesting, but we are meeting & catching up with Hayley, Bill & Harry. Hope everyone back home has had a great day. We are thinking of you all always & will soon be home!! xox

Wednesday 13th October 2010

2010-10-14T03:20:00.000+01:00

Seriously How many Physiotherapist does one girl need??

Erin & Harry Chilling after physio!!

Erin had a lovely lie-in today did not wake up till 9.40am. Just do not know what is happening with her sleep at the mo as she is going to bed normal time of 7.30pm-ish & just sleeping. Must be working her well hard bless her. Not a great day at physio today. (Sorry no video too many tears) She claimed she was tired just 5 mins of being on the treadmill. we have however got her walking some more out & about with her frame. A lot more than she is used too at the moment. So although she did not have a great physio session she has walked way more than usual since having SDR. Afterwards though Harry came over to our room & Erin & he just played & chilled. They were both played together really well & thoroughly enjoyed their chocolate milks. What a great reward. Erin's never drank so much chocolate milk she LOVES it. We then had tea in the hotel with Hayley, Bill & Harry as it was BBQ today on the free menu lovely. Erin is absolutely shattered so off to bed after where she is sleeping peacefully as I type. Off to the supermarket tomorrow as we have run out of strawberries Erin's all time favourite fruit. Great big hugs & kisses to our wonderful children at home & wonderful Family. Missing ya all loads!! Also need a great big cup of British tea so badly!!! xox

Tuesday 12th October 2010

2010-10-13T02:42:00.000+01:00

Erin's Favourite Ball in Physio!!

Erin walking with a mower in physio!!!

Erin racing daddy on a skate board for bums!!

A very hot day today but with a touch of a breeze, which made the weather a little more bearable but still humid. Erin had a goodish day. Physio was at 1pm today with Erica which was much better than yesterday but Erin still claimed she was tired when she didn't want to do anymore physio. She has now worked out that if she completely flops on the treadmill someone has to rescue her. What a minx. She didn't do as well today as last week but then there is going to be good days & rubbish days. Afternoons are no good for her at the mo. Now it is about getting Erin to walk walk walk & use those legs so she can not say she's tired all the time. After physio we had a wonder around the Gallerie Mall to pass a few hours. Then home for tea & bed. Erin must have been a little tired as she went out like a light after her stories. Night everyone sweet dreams. Not long now till we will be home!! YEAH!! xox

Monday 11th October 2010

2010-10-12T02:44:00.000+01:00

Erin's Physio Session!!

Erin having fun in the Science Museum!!

The Science Museum St Louis !!

Erin had a reasonable day today. After having breakfast in the Hotel we decided to visit St Louis Science Museum as physio was not till 3pm today. The Museum was ok but no where near as big as the Science museum in London. We covered a few sections like the Dinosaurs, space, computers & Laboratories. Erin did not like the dinosaurs as they were huge & the T-rex moved & roared. Enough to scare any 3 yr old. Erin thoroughly enjoyed playing with the cogs. After Lunch we had a little while before physio as the museum didn't take up as much time as we had hoped so we went to the hospital playroom as the hospital was only a 5 min walk away from the Science Museum. 3pm soon came round & physio yeah!!!! Well Erin did really really well. She up'd her walking speed & her time length of walking. She also did a little backwards walking which we were told after by her physiotherapist Paul & James Lee that they have never met anyone after having SDR walking backwards as quickly as Erin has. WAY TO GO GORGEOUS GIRL!! We are so proud!!!After physio we made our way back to the hotel. Had tea, a bath & ten minutes play of playdough then bedtime. Erin fell a sleep really fast today. Feel the afternoon physio took it right out of her. She definitely found it more difficult in the afternoon than in the morning sessions. She's doing so well & much better than we expected. Her strength is just amazing & we know that its helping her to work much harder, that & bribes!!lol. Can not wait for the day she walks on her own!!! xox

Sunday 10th October 2010

2010-10-11T15:19:00.001+01:00

Cheese Cake anyone??

How cute!! Sound a sleep!!

Yet another hot day in ST Louis although the sun was out & it was extremely hot there was still a wee breeze to cool you down when you were just getting a sweat on. Gorgeous blue sky & not a cloud in sight. We had a chilled day today as there was no physio. We just jumped on the metro & had a nosy day round St Louis. Once we got back to the Hotel we had a few games of domino's (Toy story Domino's) & then met up with Hayley, Bill, Harry & Neil, Emma, Connor & Cieran for dinner at the Cheesecake Factory. It was absolutely gorgeous. We well & truly stuffed our tummies. Erin had a huge Pizza & ate half of it (which is a record for her as she is not eating so well out here) followed by strawberry cheesecake. As you can see we still managed to wear her out. Got physio tomorrow at 3pm so just gonna stay around the Hotel & have a play day as Erin has been in her pushchair a bit this weekend. Hope everyone is having a great day!! Have a great day at school kids!!Love to our amazing family & friends!!! xox

Saturday 9th October 2010

2010-10-10T00:15:00.000+01:00

Erin & Mummy with the Penguins!!!

WHAT YOU LOOKING AT????

Wow what a day!! No physio today so we decided to go to St Louis Zoo with the Jones from Wales Emma, Neil, Kieron & Conner. It was a gorgeous day today & the Zoo is amazing, plus it is free to enter. The children had a great time looking at the animals. We saw so many different species that we would not be able to see at the Zoo near us at home. We saw Hippo's, Elephants, Bears, Orangutans, Lions, Giraffes, Zebras, Sea lions & many more. We must not forget Erin's favourite the Penguins. We loved it in the little house to view the penguins as it was so cool in there. Erin was so excited at seeing her fav animal the Penguin & now she has a new addition to her penguin collection. Little Sis for big Penguin!!!lol. We enjoyed it so much that we are hoping to go back there again before we come home. With the heat everyone was feeling a little hot & tired towards the end that we decided to go back to the hotel for a chill out. It has been boiling today about the 30's at least. Erin was extremely tired bless her so she really wanted to come back to our hotel. She's all bathed now & watching Ice age Dawn of the Dinosaurs on tv whilst eating her tea of ravioli. Feeling totally refreshed now. Tomorrow is supposed to be another hot day so we will not be going too far tomorrow, although the temperature is due to drop back down next week so we will make the most of it while we can. Night Night everyone!! Watch this space for another chapter in Erin's journey to the USA!!lol xox

Post-OP Day 10 Fri 8th October 2010

2010-10-09T06:53:00.001+01:00

Erin walking backwards for the very FIRST TIME!!!

Ready Steady GO!!!!!

What a fantastic day we had today!! Erin walked for the first time ever backwards on the treadmill. We are so so proud of her as she has never in her life time walked backwards. She also went on the sit board & raced Micheal & Daddy round the physio department here. She worked so hard today & was rewarded by going on the big swing. Harry had physio at the same time as Erin which was great as we were able to encourage both children at the same time. After physio we, Hayley, Bill & Harry went to the park as a treat to the kids for working so hard. They thoroughly enjoyed the swings & slide which was great. We decided to visit the Union Station afterwards & introduced Hayley, Bill & Harry to the metro. After a leisurely stroll round we went to the Hard Rock Cafe for Dinner. It was a gorgeous day & Erin & Harry had a great time together. Once we returned to the Hotel we visited another family from Wales which was great as the kids played so well together whilst we swapped hospital stories & trips around St Louis. Tomorrow we are all going to the Zoo which the kids are gonna love as it is so big & has penguins. Gotta go to bed now need to get up in the morning. A weekend free of physio but still doing though to help Erin. Night everyone. Love to our wonderful family & Friends new & old. What an experience!! xox

Post-Op Day 9 Thurs 7th October 2010

2010-10-08T02:44:00.000+01:00

THE BEAUTIFUL ARCH OF ST LOUIS MISSOURI!!!

Erin Walking for the first time on Canes!!

Another grumpy day & complaining of being tired all the time she did not want to do something. Physio went ok but Erin had to be pushed a great deal & at time's refused point blank to do anything she was asked. She got her new canes today too but would not use them properly at all as she was too tired. But as you can see by the video above she soon picked them up when we were back in the hotel. She did amazingly well considering it was her first try but she was a little wobbly as you can see. Brought tears to daddy's eyes though. We are so proud so soon after her surgery. She is definitely a little weaker than before her operation but this is just nine days after her surgery & we didn't expect her to be walking as quickly as she has. We feel by the time we leave she will have the cane walking down to a tee & possible no more frame!!!YEAH!! Daddy missed physio today as he was interviewed by a BBC Solent back in England at the time Erin's physio was on. Once we made it back to the hotel we decided to get out & about visiting the City Museum (ST Louis city puts our cities to shame, its so big we'd be classed as a village out here lol) which was not great as it is really aimed at the children who can run around & not like Erin who can not. We would not recommend this one for families of sdr whilst out here cost us $39.00 & we couldn't do a thing & there was not much to see either, not like your typical museum. We decided to go to the Arch afterwards & we so enjoyed it. It is absolutely huge & underground beneath it is a museum (yeap a proper museum) all about the American history from when the USA was first discovered. Its also free & we so enjoyed it. Kinda made up for the city museum. We met up with Hayley, Bill & Harry for tea & Erin did a little more cane walking. We feel we must say that the Residence Inn Marriott is a truly fantastic hotel to stay at. The hotel staff are so friendly & so helpful that you can ask them anything especially about the American way of life as you don't realise just how different their life style is out here to ours. We feel like we are staying in our own little apartment with dinner & breakfast thrown in Monday to Thursday for dinner & all week for breakfast. They treat you like royalty & nothing is a problem. We love them all & thank them so much for making our stay the best. Night guys sweet dreams!! GREAT BIG LOVE TO OUR WONDERFUL CHILDREN & FAMILY xox

Post - OP Day 8 Wed 6th October 2010

2010-10-07T02:34:00.000+01:00

Erin's new best friend Sponge Bob!!

Just Look at the Hair!!!

Today was not a great day for Erin. She woke up grumpy & kept complaining she was tired!!She had a bit of an unsettled night last night & was up & down till 2am. She did however sleep in till 9pm. She had an easy morning just chilling out but refused to eat breakfast claiming she wasn't hungry. But we manged to get a little toast in her eventually. She washed it down with a cuppa. We spent the morning in our hotel room playing Playdough & bubbles which seemed to cheer her up for awhile. That was after she had a massive tantrum screaming & crying. We also caught up with the family back home on skype before having lunch. Physio was at 1pm today we were so not looking forward to it but once again Erin did amazingly well with a bit of bribery. The ball pool works a treat although today she said she did not want to go in it when she was being just a tad difficult. She loved the treadmill tho & even walked side step on both sides as well. Thank goodness she's not scared of it anymore. As you can see she made it in to the ball pit at the end of the session even though she said she didn't want to go in it.lol. We then made it back to the hotel. Did some washing etc before meeting up with Hayley , Bill & wee Harry for the barbecue tonight in the Hotel. It was gorgeous bbq food. The burgers huge & absolutely mouth watering. That is coming from someone who does not usually eat burgers. Erin has been a little tired today so after dinner it was back to the room & bedtime. Fingers crossed she wakes up in a better mood tomorrow although she says she's only having a nap right now!!lol Sweet dreams everyone fingers crossed for a peaceful nights sleep tonight. xox

Post-OP day 7 Tues 5th October 2010

2010-10-06T05:14:00.000+01:00

Here's Daddy!!!!!

These feet just keep on walking!!!

Raining Frogs !!!

Today was a lovely relaxing day as Erin did not have physio till 1pm. Saying that though Erin started the day just a tad grouchy so was not really looking forward to the physio session. She spoke to her Big Bro, Big Sis, Little Bro, Nan & Gramps on skype. How cool is skype?? Video calls for free the only confusing bit is remembering the time difference!! She also caught up with her nanny & grandad on the skype phone. It was so cool to see them all. Once refreshed by a bath & lunch we made our way to the Children's Hospital for Erin's physio session. So was not looking forward to it as Erin was grumpy. Oh boy were we in for a surprise. First stop was the Treadmill (Oh this is gonna bring out her stubborn side) but no not only did Erin get on the treadmill she walked for a record 12mins without a single moan. She only had to do about 7mins but she just wanted to keep on going. She then played basketball hoops & wanted to climb the ladder inside the house her daddy were playing in, throw the frogs into the net whilst standing up & tea party in the slide house. Although she had a few moments of stubbornness the bribe of not going into the ball pit if she did not work hard worked a treat & she did absolutely fantastic. Just shows how our kids like to prove us wrong every time. We were so proud of her. After physio we went for a little wonder around the Galleria via metro which Erin thinks is fantastic & totally loves the speed they go. Then wondered back to our hotel for a quick cuppa before tea before meting Hayley, Bill & Harry for dinner in the hotel!! We finally left the lobby round 10pm after a lovely time with them & Neil & his wee boy Conner. Erin had had enough by then so it was easier to get her to bed as she did not want to leave sooner due to having a such a great time with Harry & Conner. it was just great to be able to chill out with the other families swapping surgery stories whilst the children enjoyed themselves through watching dvd's & drawing. Off to bed now Erin is sound a sleep so well worth it. Got another late physio tomorrow 1pm so just chilling tomorrow. Night everyone sweet dreams from St Louis Missouri. xox

Post-Op Day 6 Mon 4th October 2010

2010-10-05T04:07:00.001+01:00

You GO Girl build thoughs muscles!!!

These Boots are made for walking!!

AND PUSH!!!!!

Today was a great day for Erin. She had physio at 10am with Mad Micheal & an appointment at 3am for splint castings. It was really wonderful to sleep in a normal bed although Erin took a while to get to sleep last night & was extremely restless but we feel this is due to the nap she took at 4pm whilst we were out & about!! Physio went well today although Erin went on a treadmill for the first time & found her first experience really daunting. In fact she did not like it one bit, but it is an extremely weird feeling going on a treadmill for the first time. We have known grown adults fly off the back of one when they first go on one. The rest of physio went well & Erin did a lot of walking & crawling today too. Erin was in a semi conpliant mood but we managed to push her on the promise of a play in the ball pool she so loves. It was quite funny to see someone so small on a treadmill Bless her. After physio we visited the Galleria Shopping Mall seen as we had a few hours before Erin's next appointment. The Mall is HUGE!! & we mean ENORMOUS!!! Puts our shopping Centres to shame. It was really quiet too so it was lovely just to have a wonder round & they had such gorgeous Stores/Shops as we call them. Sadly we did not make it round the whole mall so a return trip is to follow. We ventured on the metro which was real cheap & a fantastic way to get around St Louis. Our hotel is just on the out skirts of where the places to visit like the zoo which are also access able by the metro. A round trip costs $4.50 per person & Erin travels free being under 5 yrs, to anywhere how cool is that. We made it back in plenty of time for Erin's casting appointment at 3pm where we meet Keith who took all of 10 mins to cast Erin's feet. The casting is done the same way as in England but Keith uses fibreglass to cast which are so cool bright red & no mess afterwards as the UK uses plaster cast. Erin loved it because it was her favourite colour at the mo & it was the best casting appointment she has ever had. This could be though due to her foot being a lot more flexible & move able than before SDR. The transformation is just amazing she is so loose & flexible & pain free it is just so cool. After we returned to the hotel for some well deserved chilling time & a lovely dinner cooked by Daddy. Erin also went to bed at a more sensible hour & her normal bed time as we totally wore her out. Only physio tomorrow at 1pm so we can have a lie in child permitting!!! (I don't think so) night everyone from St Louis. Love to our wonderful kids & truly amazing family & Friends xox

Discharge Day Sun 3rd October 2010

2010-10-04T03:27:00.000+01:00

Now this is what we call chilling!!!

YEAH!! We have been discharged from hospital. Although it was an extremely lovely Children's Hospital & throughly looked after our gorgeous girl so well we are so glad to have now been discharged. Erin was so happy to be home at the Hotel Home anyway & to have the freedom to be able to walk or crawl around at last. She so badly just wanted to get up & move around when she wanted too & absolutely hated being kept in bed. As you can all see she looks absolutely amazing & totally chilled out watching her new Wonderpets Dvd. You would not think to look at her that she had major back surgery only last Tuesday. She had an excellent physio session today. Much more happy & compliant than yesterday. She is actually a little ahead of her physio program which is great to know that she is doing so well. We do know however that we will have good days & bad but when she's happy she's good which she seemed to be today just a tad tired. Once we got back to the hotel Erin had a lovely small bath. She looked so refreshed & clean. Although she had bed washes in the hospital its not the same has having a lovely small soak as she is not allowed to soak her back just yet. She enjoyed talking to her big bro, sis, little bro & nanny on skype & then we went out just to get outside in the sunshine. We went to Walmart (fantastic store & so big) where we treated Erin to a Buzz lighteryear for being such a brave & great girl. Tomorrow is a little busy of physio at 10am (so no lie in we're so tired)& castings for splints but it is truly wonderful to be out & about. We love you guys at home our wonderful family, friends & supporters. We know this would not be possible without the help & support we are receiving each day (especially from our family & our other children. We are missing you all so much & the tea just ain't the same)But we would just like to send a really specially message to our Joshua, Chloe & Jamie we are missing & love you guys so much, ya little sis is missing & loves you all. A huge thank you to Nanny, Nan & Gramps, Aunty Clair & Uncle Mitch for all your wonderful help in looking after our other gorgeous children while we are away. Without you guys to care for our children we could not have achieved this for our little princess. The families little princess. We are so glad to have each & everyone of you guys as our family & miss you all so much. But you are all gonna love the change we have all made possible for Erin it is so life changing. xox

Day 4 Post-OP Sat 2nd October 2010

2010-10-02T23:22:00.003+01:00

ANYONE REMEMBER THIS MAD GUY?????

Dinner with Harry!!

Erin slept really well last night. Got her down a whole hour earlier than the nights before. But we feel that the op & last few days have finally caught up to her as she was not in a good mood at all today. First physio session was at 11am & Erin point blankly screamed the place day & refused to do anything we asked her too. She was being a right diva. God only knows how we got through the first physio session of the day. After physio we made Erin have a nap. In fact we all had a nap. Erin has not had a nap in the day for years & even after her major surgery this week she did not have naps the last 3 days as we thought she might due to her op & first physio session, but no not Erin. We are all exhausted & can't wait to be discharged tomorrow. Just so we can chill out properly. The second session of physio went much better than the first one today as Erin got to play with Playdough. Erin loves playdough so that won her round. That & the promise of the ball pool after she had done. She is still extremely tired so after popping in on Hayley, Bill & wee Harry (who was a sleep bless him) we have come back to her room for some chilling with Sponge Bob. We're meeting up with Hayley, Bill & wee Harry for dinner later which is coming from the a local diner thanks to our lovely other halves. fingers crossed for a better day tomorrow. Tonight we had dinner with Hayley, Bill & Harry in Harry's room. As you can see they looked so good together!! Harry is such a cutie & makes us laugh so much with his funny ways. Erin & Harry have become such great friends & it is so nice for them to have each other to share this experience with even if they don't quite fully understand they both know hay you've had the same operation as me. It has been so nice to have another family here & we are meeting more families everyday. This week alone there has been 3 UK families & 2 USA families that have had sdr. What a great way to end the Hospital stay by having dinner all together. Our hearts & thoughts are with the children who had SDR yesterday & look forward to seeing them soon.Night night everyone. xox

Post-Op Day 3 Fri 1st October 2010

2010-10-01T14:16:00.003+01:00

It is morning & just look how happy Erin is this morning??She is doing fantastic today already. She slept well again last night & even moved in her sleep from her back to her side & then back again several times during the night. She is full of smiles & joking even more than yesterday. We have our little girl back. She has had no medication since 10pm last night & did not want any this morning when she woke. The Doctor is still really pleased with her progress & can't believe just ho well she has done without the Valium. She has finally figured out that she can actually move her arms, head & top half of her body all by herself & it doesn't hurt a bit. Her favourite phrase at the moment is 'when I get better' then she reels of a list of things she wants to do when she is better. Physio starts today & Erin has now (8.10am) had some ibuprofen to help her with her first session which is at 9am. Yeah we have been let out for the first time. Harry & Erin we're able to go out in their buggies to the gorgeous roof garden. They both really enjoyed it & Erin really didn't want to come in. The garden is gorgeous & the sun was shining gorgeous.She has been promised she can stay out longer after her next physio session today @ 1pm. Physio today went really really well. Mike is truly fantastic & extremely wacky but Erin soon warmed up to him but thought she could call the shots as to what she would be doing in physio today. Erin sat herself up in bed whilst we were trying to get her up for physio. When we got to the physio room Mike showed us just how much Erin's ranges had improved so much & we were so amazed at the difference. She is also now completely flat footed. Erin could not wait for the stretches to be over & turned herself over half way through as all she wanted to do was walk. She put herself into the crawling position & Mike then showed her how to get down from the work table so she could with our help of course too soon for that one. It brought tears to our eyes & we just could not believe how much she could do & wanted to do after only having major surgery on Tuesday. She is such a determined little girl & just showed us all that she is going to do it if she really wants too & nothing is going to hold her back. Mike told us not to blink or we would miss the changes but we managed to see them & were truly amazed at the changes already. Once again we are so proud of our little girl we have attached the video of her aid walking for you all to see & now she can get out of bed she wants to be out of bed permanently. We thought she would have a nap after physio as we thought an hour of physio would certainly wear her out how wrong can we be she is still wide awake. xox

Day 2 Post-OP Thurs 30th September 2010

2010-10-01T13:58:00.002+01:00

Erin slept really well last night with only a few wakes. She slept from 10pm till 6am which was fantastic & was almost her jokey self. The Doctors are really pleased with her progress & She looked much much better & was a lot more chatty than the day before. Her little scar is healing up really really well, but she still wakes up as if she can not move. Which is quite funny to watch as she refuses to move any part of her body including her head. As the day went on Erin was reduced of her iv & medication. By noon she was no long on drip pain killer but Tylenol & Codeine. Unfortunately shortly after being give the Tylenol with Codeine Erin could not stop scratching her legs. She got very irritated & even caused her legs to bleed. She was given some benadril which took awhile to work but eventually kicked in about 20mins later & she then fell asleep.Unfortunately Erin was extremely upset the whole time so it was quite a relief when she did finally go to sleep. Erin slept for a few hours & the itching seemed to have subsided when she woke. The doctors seem to think that it could have been a possible be two reasons one being an allergic reaction to the codeine or a side affect of the operation were the nerves in the leg feel uncomfortable kind of itchy. She is now on Ibuprofen & just Tylenol. Erin's arms have been a little shaky today also but the nurse feels that this is due to her coming of her iv meds. She was fine for the rest of the afternoon & she was even giving concerts by tea time singing. She spent the rest of the afternoon watching videos & Sponge Bob. She has also been eating & drinking like food & drinks are going out of fashion & by the end of the day she is moving more freely!! Well done Erin another fantastic day all in all & we still can't believe how well & quick they seem to bounce back. You really have to see it to believe it but it is so amazing.xox

Day 1 Post-OP Wed 29th September 2010

2010-09-30T03:49:00.004+01:00

STILL SMILING!! Erin had a some what peaceful night last night. She woke at 10pm 11pm & 1.30pm. She had a slight temperature at 1.30 so was given some Tylenol which settled her & she fell asleep for four hours. As we mentioned she is not on the Valium so the times she did wake she was in a little pain. However she did not have her temperature for long & it was not too high either 38.5. In the morning she was given the all clear to move on up to the children's ward on floor 12 of the hospital. We just had to wait till a bed became available. She watched a bit of tv this morning & was given some playdough to play with whilst we waited by the play therapist here. She loves playdough & had me making butterflies with it. Daddy had a go but couldn't quite do it. At 12pm we had the all clear to go up to the children's ward as they now had a bed for her. We were hoping young Harry would be sharing with us as it is two beds to a room here but unfortunately it wasn't to be. Later on in the day Erin ate a load of grapes & strawberries which she loved & then washed them down with some cheese. She had to be turned & found this a little difficult as she was trying to sleep but kept getting woke up by various noises on the ward. She has watched a little more tv & continued with her jokey side when she is in a happy mood. One of the medications Erin is on makes the children a little cranky but she really has not been that bad. She is continuing to improve each hour & we were able to see her incision today on her back & you wouldn't believe it but it looks just like a scratch, nothing like you would expect to find on someones back after they have had major back surgery. They give it a year & you will hardly notice.
WELL DONE ERIN!! WE LOVE YOU SO MUCH BABY!!! xox

SDR Operation

2010-09-28T14:48:00.003+01:00

We arrived at the hospital at 5.30am this morning our time!! We have met a load of wonderful nurses & anesthetists who are looking after Erin in her operation as I type now!!! She went down for her operation at 7.40am & the nurse was coming to find us as we were running a bit behind!!! Yeap you read it right we were not them!!! I got to go down with her as Erin needed to gas to put her to sleep as she is allergic to the pre-med!!! She did not like the mask at all so was a little upset going to sleep!!! fingers crossed they say she won't remember but knowing Erin she remembers everything!!! Just had our first hourly call & Erin is doing fine!!! Dr Park is about to cut the nerves in a few minutes Erin's life is about to change forever!!! Missing our wonderful family & friends but know you are all here with us!!!Erin came out of surgery around 11.15am & she had done amazingly well. Dr Park said she was fantastic & that she will do well in her future. We then went to see her in the Recovery suite but Erin was a little anxious after her surgery. Erin is allergic to Valium so is unable to have this medication to help reduce the pains of the spasms they have in their backs after the surgery. She has continued to progress really well & because she is not having the Valium she is awake a lot more & also a lot more responsive. She has to be moved every 6 hrs but finds this difficult as this is where the Valium would have helped with the spams she would be feeling. We would just like to say that our little girl is a truly amazing & inspirational young 3 & half year old girl. Not once has she complained about being in pain when she is obviously so & although this she is continually making us laugh with her funny faces & little comments We are two extremely proud parents & to her brothers & sister she's missing you guys & loves you very much!!!She is already talking about what you guys are going to be doing when she is all better & can come home!!xox

Meeting Dr Park

2010-09-28T03:17:00.001+01:00

Today Erin had her assessments & checks at the Children's Hospital. We were first on the list so had to be at the hospital by 7-45am. We met James who co-ordinated & made this all possible for Erin a fantastic guy. We then watched a video on SDR. Once we had watch the video we met Joan Puglisi PT Program Coordinator (a truly lovely woman)who did a wee check on Erin's legs to see just how much spacicty Erin has. She was also amazed at just how strong Erin is. Joan also answered any questions we had which was not many after already emailing & researching SDR. She also told us that Erin will NOT be needing another walker. She gave her two more notches on her walker & then she will no longer need it ever again!!We then had our appointment with Dr Park. He is a truly wonderful man who has all the time in the world to give you & who gave us the greatest news we could EVER wish for. Erin would be walking independently in about a years time & that the operation will completely remove all of Erin's spacicty. This will than give Erin much improved balance & posture but Erin will also be able to move more freely in the same way we all do. We are so over the moon. That was all we wanted for our little princess which we know is not possible on our NHS but has been made possible by Dr Park in the USA. Whilst we were waiting to meet Dr Park we met an American couple who's 4 yr old daughter had SDR 4 mths ago & was having a 4mth review appointment with Dr Park. Well we can tell you this girl was standing by herself, she was walking all by herself. She was even running around all by herself & her parents told us it was the best thing they had ever done. You would not know by looking at her that she has Diplegia Cerebral Palsy. We so can't wait now but know the next few days are going to be really tough. Erin is first on the surgery list tomorrow & we have to be at the hospital by 5-45 am. Her surgery is at 7.30am & will take about 3-4 hrs. Dr Park is actually doing 3 SDR Surgery's tomorrow for the very first time. He too was also amazed at just how strong Erin is & says this will help her greatly in recovering from the surgery. Well done to mummy for all the physio. She will also be able to return to school when we get back so watch out Ruby & Amelia she'll soon be chasing you guys around Pre-School. Love to all our family, Friends & Amazing supporters who have made this all possible. The transformation is amazing & we all made it possible for Erin. Missing our wonderful kids & family/Friends xox

Made it

2010-09-26T16:12:00.003+01:00

HI everyone we have made it safe &sound to St Louis. Erin enjoyed the flight especially the turbulence & wished the plane would go through some more. Think she has chosen what she would like to be when she grows up!!! Gorgeous pilot don't ya think???She asked the pilot what everything did every single little button then thought she could fly the plane!!lol. We've just had breakfast. Erin had pancakes but did not like them a bit. Now going to find out what is in ST louis. We have had to move hotels as altho ours was lovely it was just not practical for us to stay there for 4 wks!! We are now at the Residence Inn which is absolutely gorgeous & much more practical for us we can even do our laundry here & get free breakfasts all week!! So Brett is happy. What a manic first few days but we now feel settled so we are now able to chill till the big day.Love to all our wonderful family. Missing you guys already & great big hugs to everyone. xox

LOVE & SUPPORT

2010-08-13T17:01:00.003+01:00

On Wednesday 11th August we achieved a huge mile post in our fundraising so big that Erin is definitely going to be having the operation that will change her life permanently for the better (altho we are still having to fund raise for Erin's aftercare & return trip to St Louis next year). We are so overwhelmed & also relieved that we have made it in such a short time. We only started out 6 months ago & feel that we have achieved the world. This is all possible thanks to the love & support of a truly wonderful family, amazing friends & fantastic supporters who have all rallied round to help raise the much needed funds. To you all we thank from the bottom of our hearts as we know this would not have been possible without the love & support of you all. THANK YOU xox

ps don't forget to follow Erin's journey right here on her blog!! xox

The perfect candidate

2010-08-02T22:28:00.002+01:00

February 2010 - My mum & dad sent my medical history, xrays & dvd's of what I can & can not do to Dr Park at St Louis Children's Hospital, Missouri, USA for assessment to see if I was an ideal candidate for Selective Dorsal Rhizotomy (SDR for short). On the 24th February they heard that I was a perfect candidate for this treatment so it was full steam a head & the journey of fundraising began!! Hard work ahead but well worth it all the way!! My operation is scheduled for Tuesday 28th September!!