Wednesday, 29 December 2010

On the Road Again!

After a day of being discouraged, Evan decided he wanted to stand at a table and play.   Physio was great as we concentrated on getting him strong and stretching, but it was when he was allowed on the bike as a treat and had to walk there hands held that he must have gained the confidence to stand back at the apartment.

Things got better in the evening when we met at the Newton Smith's apartment.  |All the families went for dinner and inspired by Pola and Abi walking Evan decided he wanted to walk too - hands held, but at least a start.

Physio on Tuesday 28th was great.  Evan got his new sticks for walking.  This is much more difficult than a walker and he was keen to try them.  He walked 51 steps with help and is getting stronger every day.

In the evening we went for dinner again and Evan tried his sticks but was a bit tired and we got him to use his walker instead.  It was amazing, he walked really well and was nearly as good as before the surgery.  We have been giving him treats for doing well and have promised him flashing shoes like Pola and Abi have to encourage him further.

We are encouraged by the Holland family post about Leo who had the same surgery and didn't walk prior.  He was told as was Evan he would walk independently within a year (first steps for Evan) and today he walked independently, having not returned back from St. Louis long ago.  Truly amazing and an inspiring story.

Monday, 27 December 2010

Merry Christmas

Well Santa came to the hospital and Evan was really happy, but as you can see it was a bit much.  He is still tired and very weak.  He managed to crawl more today, but slept for hours afterwards.  In the meantime his dad and I had Chicken and Chips for Xmas lunch, which was a bit different. Carrie Newton Smith called in to give us and Evan presents which was a lovely surprise.  Forgot to say that Pola's mum and dad also came in with a lovely gift the day before for him and he played with it for hours.  It is a real community with everyone looking after each other.

Boxing day was discharge day and we were looking forward to therapy.  Evan is still weak and we are encouraging him to keep his head up to gain strength.  He is quite frightened of being picked up and this is not helping.  He cried before therapy and we couldn't console him for some time.

Once in therapy he was a different boy.  The therapists have a way with the children which seems to reassure Evan.  He managed to sit unaided playing basketball which is great as we have struggled to get him to sit with his head up.

Also he got to ride a bike and did a lot of the work himself. Given we were struggling to get him to agree to get out of bed this is a major step forward.

Once home he was really tired but he wouldn't give in.  He wants to walk, but is unable to bare his weight at all in his walker.  I think this is discouraging him and he wants his old legs back.  His dad did some stretches whilst he watched TV and then we went for a walk downstairs.  He was so tried though he asked to go back for tea and was out like a light early.

We hope that tomorrows physio will help him become more confident as it will start looking at standing.  Michael is fantastic as a physio and we have great faith in his ability to encourage him.

Once he went to bed we both relaxed and caught up on rubbish tv with a beverage or two.  I haven't seen the outside of the hospital since 21st December, so it was a relief to be out.  I have to sayhowever that the view was fantastic and they have a beautiful rooftop garden in the hospital which I did get to sample.

Merry Christmas and Cheers.

Saturday, 25 December 2010

On the Mend for Christmas Eve

Well we haven't updated the blog because it's been a really tiring few days.  Evan has slept quite well, but with all the buzzers and the nurses coming in I haven't slept well at all.  Evan's dad has had to travel back and fore to the hotel early and late, so all in all we've been quite exhausted. At least we have a room to ourselves.  The picture above is a beautiful poster card given to us by colleagues in Atradius Belgium to put on his room door.

When we were transfered to the ward, Evan still slept quite a lot as he was receiving quite a lot of medication, so there wasn't much to report anyway.  This was reduced on the afternoon of the 23rd and his appetite kicked in big time:  Toast, Jelly, Ice Cream, Banana, Carrots and more.  The doctors and nurses are really pleased with his progress.

The next night was difficult as Evan stayed awake until 11pm and then started feeling some pain in his back which kept him awake in the night.  He was then up early watching Disney films after taking pain medication.  Must be the affects of having so much sleep in the previous days.

Christmas Eve arrived and so did our first physio session.  The first session only concentrated on transferring him from the bed to the buggy and back again.  This was quite hard as Evan was in some pain and a bit frightened.  He was a bit weak so it was a struggle.  Later in the day he had physio with "Mad Michael" which he really enjoyed even if he was in a bit of pain.  We learnt to get him to help with transferring from bed and then went to the physio room.  Evan transferred to the mat and we learnt some stretches.  The highlight of the session were seeing Evan's legs so loose as before surgery we couldn't pull his legs apart without them springing back together; now they go really wide apart and stay there.  He also asked to get into a crawling position and crawled a little.  After physio we went to a fantastic playroom they have for all children in the hospital.  There were hundreds of toys and Evan got given a huge Christmas Tree Balloon.

After such a hard physio session, we settled down with tea to watch Peter Pan and then to bed for to wait for Santa to arrive.  

Evan has been in the news quite a lot: we did a skype interview for tv, so check them out on:

Wednesday, 22 December 2010

Operation Day!!!!

A very early start as we had to be at the hospital for 5:45am.  After registration, we were taken to speak to various people about what would happen and had to answer lots of questions.  Evan had to change into a little fish gown and got to watch Disney while he waited.  We explained as best we could that he would need to sleep for Dr. Park to give him his new legs and when the medicine came he took it without question - he even said it tasted nice (yuk!).  He got to choose a flavoured mask for the gas and tried the mask out to make him less frightened.  By the time he went into the operating room he was very relaxed and din't cry at all - he is a very brave boy.

We received regular update calls in our private room to let us know everything was going well and finally Dr. Park arrived to tell us it was all over and he was happy with the surgery.  We were taken to recovery to see Evan and although he cried a bit, he has been mostly asleep since.  He must not be feeling too bad as he had time to watch Peppa Pig earlier.  We have been in ICU all afternoon and one of us will stay overnight as only one person can sleep in the room. 

Up to the ward hopefully tomorrow and santa should be around with toys which will be fun for Evan.  We will send a note on the room number when we know it as the hsoiptal runs a message service via the internet and I'm sure evan would appreciate getting messages.

The staff have been fantastic, calming Evan and informing us at every step.  They have really put us at ease and made the whole experience so much less traumatic than it could have been. Thank you to them all.
The staff here have been excellent

Tuesday, 21 December 2010

Dr Evan Meets Dr Park

We had a full day today, with the main part starting with a Physical therapy assessment.  This was very positive and quad sticks are being ordered for Evan so he can walk with sticks rather than a frame.  Then in his doctors lab coat Evan went to meet Doctor Park.  Dr Park was very positive about Evan's future potential.  There is only a 20% chance he will need orthopedic surgery after the Rhizotomy is completed and within a year he should take independent steps.  There is no reason why he cannot walk fully independently in the future, but he needs to build strength through walking in Physical Therapy sessions.   Evan's surgery is set for 7:15am- 13:15 UK time, 14:15 CET.

We then went to see Pola and Abigail, who had the surgery some days ago.  Both are doing well and their parents are really pleased with the outcome.

We finished the day with a treat at the Cheesecake Factory as Evan will not be able to eat after midnight and then back home to get ready for an early start: 05:45 at the hospital.

Sunday, 19 December 2010

1st Days in St. Louis

Evan was awake at 4am, but it could have been worse.  After unpacking we went for breakfast and then headed off to pick up our car.  We spent the rest of the day sorting out mobile phones and taking a look around the Galleria - a shopping mall a bit like Cribbs Causeway or Bluewater.  Evan went to sleep whilst we were out and wasn't happy when we woke him, but he soon cheered up when he spotted Santa and had his photo taken with him.  The jet lag started to catch up with us and we ended up going to bed at 8pm.  Evan woke up again at 3am, but we managed to get himback to sleep and he just got up at 6:30 am,hopefully that is the end of the sleep disruption. We are so lucky to have made it, because we have just checked out BBC news and seen the chaos at Heathrow.  Today is for food shopping, trying to catch the other families when they pop back to the hotel and preparing for the pre-op at the hospital tomorrow.

On our way to St. Louis: 17th December 2010

After warnings of snow we decided to head up the day before and stay in Heathrow.  The next day, fresh after a good nights sleep, we headed for T4 for our first flight to Atlanta.  We looked out of the window at the gate as the sky turned grey and the snow started to come in, turning to a blizzard.  Luckily it eased off and with an hours delay we made it on the flight.  Evan was excellent for the whole flight and we managed to get him to sleep only for an hour and  a half.  At Atlanta we knew we were cutting it fine with only 30 minutes to transfer and we ended up missing the connection.  We were transfered onto a later flight and finally got to the hotel at midnight local time after a 20 hour day.  Evan was oblivious having slept all the way from Atlanta.  The hotel is great and they had left a christmas tree in our room ready to decorate the next day.  One of the other families had sent us a message to say they had gotten us a kettle and to welcome us.  Two of the children here had the same operation already before we arrived, so we are looking forward to seeing how they are getting on.

Monday, 1 November 2010

An amazing first week

Well, what a first week. The current total stands at £1900 with a further £1500 pledged by organsiations and individuals. The response has been amazing and there are lots more things in the pipeline. By the end of this week we should have some more events and fundraising details to share. Thanks to everyone who has helped so far, especially our families who are as exhausted as us.

Wednesday, 27 October 2010

Fundraising Update

Thanks to everyone who has donated so far.  It has been an amazing couple of days, but we are still far far away from the total we need.  We have a Christmas Fayre planned on 13th November with lots of treats. Come along to the British Legion in Rumney, Cardiff. More details on the website.  More news as it happens.

Saturday, 23 October 2010

A Christmas Wish for Evan

My name is Evan.I am 3 years old and have Cerebral Palsy due to being born too early.  My Christmas wish this year is to be able to walk like all my friends.  Mummy and daddy want to take me to America in 6 weeks on 21st December for an operation which could make my wish come true, but it costs a lot of money.  If you can help by donating time, money, a venue, a prize or just some words of encouragement then you can find me on   I will be blogging during my journey so you can see how I am doing.