Friday, 14 January 2011

Coming to the End - I cant believe it's been nearly a month

On Sunday we went  ice skating and in the afternoon we went to the zoo with Abi, Talia and Tim to see the penguin parade.  The kids really enjoyed themselves, but it was absolutely freezing.

On Monday at physio Evan didn't do as well, until the end when he balanced really well on a gym ball which he couldn't do previously.

In the afternoon he amazed us by walking with his sticks on his own, but what topped it off was:


This is the reason we came here and our goal for the trip that we thought we wouldn't achieve so soon.  Thank you everyone for making this happen for Evan.

The rest of this week has paled into insignificance, but he has been showing his new trick off every evening to his friends and is getting more and more confident on his walker and his sticks.  in fact, we may have to relegate his walker as he is getting too fast wanting to jump around in it.

We are coming to the end of our stay, but it is just starting for others.  Annabelle and her family are now back at the hotel and it has been lovely seeing her rapid progress.  She is already in her walker, way ahead of where Evan was at the same stage and she is a determined little girl who we know will do well.  The last social evening was on Wednesday after a leaving party at Carrie, Tim, Abi and Talia's apartment.We will all miss social evening as it has been a great way for the kids to inspire each other. 

Abi, Evan, Annabelle, Amelia and Talia with Sasha at dinner

This will probably be the last post until we return home unless Evan decides to walk unaided.  We have had ups and downs during the journey, but it has been a fantastic experience which we are grateful for and Evan a new start in life.  We have met some great people who we hope will be friends for many years to come.  We look forward to coming back in 2012 to show all the fantastic staff at St. Louis what they have achieved for Evan.  Thank you to Dr Park, James Lee and dr. Dobbs.  Special thanks to the physio team, in particular Michael, Beth and Nicole who have worked hard to help us get Evan where he is.  We are really looking forward to seeing Michael at the SDR party on 29th January in Daventry.

Sunday, 9 January 2011

Farewell to Friends

6 Jan: We had a slow start in physio and Evan was quite distracted.  He wasn't co-operating on the treadmill so we tried another new piece of equipment the Biodex.  This helps with resistance in the legs and movement of the leg up and down.  He was still distracted but we told him it was a space rocket and this got some response out of him. 

Michael also showed us a good way to help with his balance and we have a great video of this below.  This is one for Steve given my dodgy shoulder.

Balancing Act

In the afternoon we went to The Magic House to show Sasha what fantastic facilities there are for kids here.  We had a great afternoon and Sasha had the shock treatment while Evan had a helping hand!

In the evening Inside Out were filming the next stage of Abigail's story.  Carrie and Tim asked all the families to join them for dinner downstairs to get involved and we had a fantastic evening. 

Hansens, Newton-Smiths and Podgorskis

Rafal and Evan - such a nice picture

The kids really showed off.  I'm annoyed with myself that I didn't get a picture or video of Abi pushing the SDR train because she did so well.  Hopefully someone else did and can post the link here.  In the meantime, here's a few of the gang on the SDR train.

On the way back to the apartment Evan walked one handed for the first time ever.  Before he would try and end up pivoting on his feet close together.  He did 30 steps.  He has struggled a little bit since, but still it's a great start and he has started holding one hand only on his walker as well.  He is still only 3 weeks post surgery, so he is doing incredibly well.  The walking is on you tube link below.

Evan walking one handed.

The next day Evan did some good work playing basket ball sit to stand and working his feet to kick a football

In the afternoon we met Dr. Park for the last time and he was really happy with Evan's progress.  He has said Evan will definitely walk independently in less than a year and we will come back now in Spring 2012.

So to the last chapter of today's post and a sad one.  The Podgorski's left on 8th and this evening we went for farewell drinks at their apartment.  They really have been a big motivating factor to the kids and Happy Birthday in Dutch has been the anthem of everyone's journey.  Evan told us he loves Pola and I know he is really going to miss her.  They are similar ages and she has really spurred him on by doing so well.  We will definitely visit Amsterdam in the near future.  I will also miss her little sister Julia as she is so cute and eventually let me pick her up to throw her around - light as a feather and mischief in her eyes.  A sad day, but also a happy end as the next part of the journey for them begins - we wish them the very best and we know Pola will do well.

Wednesday, 5 January 2011

It's Magic!

On 2nd January we went to the Magic House with the other families for the afternoon.  What a fantastic place.  Evan was on his feet for over 5 hours apart from lunch and a bit of crawling through tunnels.

This is the best play facility I've ever seen and is really magic, as around every corner there was something new to see and after 5 hours we hadn't seen everything.  All the kids had a great time and we will definitely go back.

Out for a drive with Pola

The Great Escape

Presidents Hansen at the Oval Office:  Bring me some M & Ms now!!!!


We have had some great physio the last few days and Evan tried using the coupe car like the one he has at home.  At home he can only go backwards and goes around in a circle.  By the end of the second session he had gotten the idea of moving his feet forward to move it forward so we are hopeful by the time he leaves he will be able to use the one he has.

Video footage on YouTube at this link:

Evan in his car

We went swimming for the first time since surgery, which was something I was really looking forward to.  In the UK Evan would go stiff as a board and his legs would float up to the surface which meant we haven't been able to teach him to swim.  My expectations were probably a bit high as I didn't feel it went so well. He has no stiffness in the water, but still isn't grasping the kicking and arms together actions.  Even for able bodied children it takes time though and he is still young - plenty of time.

Today he saw Michael who really enthuses him to keep going.  Evan is quite lively and likes similar characters to himself, so Michael is perfect for him.  We tried on the treadmill again going forward, backwards and side stepping.  He managed 15 minutes which is excellent for only a second go ever.  We are trying to get him to take longer steps which will help to keep his feet flat.  He walks now in small steps out of habit as he can take longer strides when he wants to.  The physio here is really excellent and Michael asked us at the end if he could have improved in any way or done anything differently.  They are so open to working with parents and learning from parents experience - we had nothing to add as it was all positive, but the thought was there and we really appreciated it.

You tube links of Evan on the treadmill:

Walking Forward

Walking Sideways

After physio we went to see Dr. Dobbs the Orthopaedic Surgeon.  We have been looking forward to this as our main concern all along and the reason for us having the surgery quickly was Evan's hip problem.  Dr. Dobbs was happy with the result of the surgery, but has said that if Evan had come to him and not had the surgery he would have strongly advised to have tendon lengthening in the groin area.  As it stands he cannot say he will definitely not need it, but the chances are reduced and with good physio he could recover.  The need for more invasive surgery is less likely.  This is great news so we now just have to ensure his hips are monitored going forward to keep checking if the less invasive surgery is needed.

All in all a good couple of days.  Evan has surpassed his walking target to lap the physio room and is getting stronger and stronger each day.  The best part of the trip other than the improvements Evan has seen has been meeting the other families.  Evan has had so much support from the children and families going through the same experience and we have met some lovely people.  This is also helping the other children who are really progressing.  Pola is getting stronger in her walker every day and runs rings around Evan.  I have no doubt she will be walking independently in the near future.  Abi took a massive step by taking a few steps independently and being able to walk holding one hand with her dad.  Well done to all of them for working so hard, even though it hasn't been an easy time for them.

Evan and Pola - so cute
Well done Abi

Sunday, 2 January 2011

Happy New Year

Quite a while since we posted, but as Evan has been getting stronger we have taken the opportunity to go out and about a little more.  On 29th we visited Union Street Station which is now home to shops and a hotel.  Evan got a Cardinals Cap so that he could get into the American spirit of things - he has picked up the accent for some words, so seemed appropriate.

On to physio in the afternoon and concentrated on standing and did some work on the scooter boards to get Evan to pull himself along with his feet.

More physio on 30th and Evan went on the Total Gym to help strengthen his muscles.  I don't think we have room for another piece of gym equipment at home!  Maybe we will get rid of the ones which are used as clothes rails currently!

In the evening we went downstairs for dinner and  we did a treasure hunt which seemed to really motivate the kids to walk.  It made a real mess, but they had fun so it was worth it.  The picture shows Abi, Pola and Evan walking in their walkers finding the treasure.

New Years Eve arrived and we went to physio early.  Evan did some great work climbing up and down stairs holding on to the rail. He also had squeakers on his feet to help remind him to put his heels down when walking - he does this from habit now.  It really helped and he had great fun chasing Michael - see the you tube link below.

New Years Eve after physio we went to the Zoo.  Unfortunately we don't have photographs as we walked in the door and were ushered into the gift shop as there was a tornado warning - four people died in Missouri, so it was quite serious as it landed in the North of the city.  After 45 minutes we were allowed to leave, but the zoo remained shut down.  Never mind, we went to the science museum instead.  We didn't have much time there so worth another visit if only to see the grossology exhibition - snot, vomit and other yucky stuff I'm sure Evan will love.  They also have a fantastic animated T-Rex which scared Evan.

In the evening Evan did some great walking and you can really see the benefits of surgery by the way he is standing in his walker.  Before his legs would be so close together which really didn't help balance and meant he got tangled up quite a lot.

After ringing Nanny and Bampy for UK New Year and watching the whole of Jools Holland's for the first time ever, we went to the Newton Smith's apartment to try to ring in 2011, but only lasted until 11:30.  Evan was exhausted and fell asleep at 11:45.  We stayed up to ring Nanny and Bampy again at midnight - 6am UK time - ha ha!

Talia and Evan playing doctors

Dr Newton Smith - this is to fit a 3 year old!!!!
New Years Day was very lazy and we slept in.  In the afternoon we had a drive around to explore and went for lunch in a Celtic Bar.  They had Port Talbot Tuna Melt on the menu - bizarre.  In the evening we all went for dinner at a fish restaurant and the kids walked around at the end.  Fantastic end to a great few days.

Evan walking out after dinner

Evan and Mummy outside Landry's Fish restaurant

Sasha arrives tonight and we are really looking forward to her being here and for her to learn the physio Evan needs when he gets home.  More news next week, hopefully showing more progress for Evan who seems to be going from strength to strength.