Friday, 28 December 2012

Christmas 2012!

This is just a quick update while we are in that funny lull between Christmas and New Year. We have had a lovely, quiet Christmas at home. Luckily Father Christmas (or 'Santa', said with no 't', as my children say, having obviously spent too long in America) did manage to visit, and the children were very happy. In fact, our night's sleep on Christmas Eve rivalled some of our worst in St Louis, as Daniel woke up at least 5 times in the night, because he was so excited! He was also full of cold, which didn't help.

The children have had lots of time to play with their Christmas presents, and generally adjust to being at home again. That said, in many ways it feels as if we have never been away!

Sneaky bit of physio while playing with his Star Wars present from Santa
Nice crossed legged sitting - he is able to manage about 10 minutes sitting on the floor again now.

We did give Daniel a day off physio on Christmas Day, but we have otherwise been doing the home exercises every day, and have also had one visit from our private physio, Jenny, this week.  Daniel is definitely getting a little bit stronger, and has now tried doing the kicking exercise with ankle weights on....

He has also been trying tummy crunches (small ones!), amongst other things.

The last couple of nights he has managed to wear his knee-immobiliser all night for the first time (we had previously been needing to take it off about 1am). The immobiliser alternates between legs, and holds the leg straight throughout the night. It isn't very comfortable for him, but he is tolerating it well now, and we can see the positive effect when we come to stretch his hamstrings in the morning.

Yesterday, Daniel was on the front of our local paper again. They had phoned us on Christmas Eve to see if we were back, and were obviously looking for a bit of a 'good news' story for their first issue after Christmas......

Today Daniel had his very first walk OUTSIDE! We wanted to do this before now, but the weather has been so terrible since we got home that we haven't managed it. However, today we seized a gap in the rain and he walked all the way round the outside of our house. It wasn't necessarily his best walking, but a milestone achievement nevertheless, and it also included the slope back up to the front door.

We have lots of friends and relatives coming to visit us over the next week or so, and we still need find time to fit in all that physio, so the next time I update it will probably be 2013. It's a funny thought that at the start of 2012 I had barely even heard of SDR, and I had certainly never heard of St Louis Children's Hospital! I look back on 2012 as a dramatic, but ultimately satisfying year, and I wonder what 2013 will bring. Happy New Year!

Saturday, 22 December 2012

5 weeks post op....nearly Christmas!

The first week at home has been a bit of a blur, to be honest. In some ways it was lovely to return just in the final build up to Christmas, but it was also decidedly peculiar arriving back into school in the last week of term. Lucy went back to school on Monday (with a bit of a late start). She was delighted to go back, although exhausted (but then, being the end of term, most of her classmates were too!)

Daniel has not officially been back at school this week, but as ever it has been difficult to keep him away. He went in on Monday afternoon for his class Christmas party, and walked into his classroom for the very first time, to stunned silence from his classmates! This is him in the corridor, just about to turn right into his classroom and surprise everyone.......

He also went in just for the lunch hour on Tuesday - for Christmas dinner.  I had stayed with him on Monday for the party, but on Tuesday he declared that he didn't want to go if I was going to be there. He thought he might hurt my feelings by saying so - he was wrong about that!! I happily handed him over to his more than capable Teaching Assistants and had a whole hour to get some jobs done. Then on Thursday- the last day of term- he went in at the start of the lunch hour and stayed for the afternoon. When we arrived he walked all the way from the entrance of the school round to his classroom! Being the lunch hour there were quite a lot of people about and he had several sets of clapping from groups of older childen, plus staff coming out of the staffroom to see him, the ladies coming out of the office etc. All in all he was clearly chuffed with himself. When we reached his classroom, I then lifted him into his wheelchair to go off to the Dining Hall for his lunch, and I left!

To be honest I have been extremely grateful for those few hours for which Daniel has been in school because he has otherwise been at home all the time, and we have of course needed to get the physio regime started, which has left a VERY small amount of time to get ready for Christmas! Please accept our apologies if you usually receive a card from us and haven't this time.

Our other difficulty has been that Daniel in particular has been extremely jet-lagged. He has been waking up just as Rich and I have been about to go to bed (sometime between 10 and 11pm) and has then been awake until at least 2am! This has been depressing for us, when we have still had to get up in the morning, especially once Rich returned to work mid-week. This photo was taken at midnight on Wednesday night, when I ended up bringing him downstairs, so he was sitting on the sofa watching the Disney Channel. The photo does allow us to celebrate the lovely relaxed legs though...

About 2 hours after this was taken, when he was back in bed, he was sufficiently bored that he managed to wobble the second front tooth enough that it finally came out (as you might spot in later photos!)

Daniel has otherwise been working hard in his sessions with his physios (currently he is having 2 sessions each week provided on the NHS and 2 private sessions). The major focus at the moment is on building strength, particularly in his trunk.

We have also worked hard at the home exercises and have enjoyed watching the tiny improvements we see all the time. This photo shows today's new achievement...

We have continued to try to get him to use his walker round the house...

This week he has started to be able to lift his walker a little to turn it, which is more progress. It takes quite a lot of lifting to make a 90 degree turn and we are still helping with that but he can now lift it a little and adjust his direction, which is great. Eventually we will unlock the front wheels so they swivel, but he is not strong enough for us to to do that yet.

We continue to work on teaching him to transfer from his walker to his gamma chair, to sit at the table etc.

Daniel is not experiencing much pain at all in his back now, unless he happens to be moved suddenly or to sit a long time in the same position, eg in the car seat. His back is healing very nicely. In this photo you can see the main SDR scar (the dip in the middle is where the vertebra was removed - this will take about 5 years to re-grow). You can also see the smaller scar (at the bottom of the photo) from the epidural.

His legs are also starting to heal, although he is still getting some pain from his hamstring surgery, especially when we try to stretch his legs. In fact we are still struggling to get anywhere near a decent stretch, particularly with his left leg. Of course the hamstring surgery was done nearly 3 weeks after the SDR, so it's not surprising that it is behind in the healing process, and hopefully the stretching will improve when he is in less pain.

So, that's it for now. I will update again in another few days, but in the meantime HAPPY CHRISTMAS to everyone!

Sunday, 16 December 2012

Sunday....and we are home!

We arrived home at about 5.30 this evening. Our lovely neighbours had put out balloons and 'Welcome Home' banners, as well as having put food in our fridge, which was incredibly kind, and we were all very excited to be home.

Our journey home was fine, but there was no getting around the fact that St Louis is over 4000 miles away from Cheltenham, so we set off from the hotel at 9.20am (St Louis time) on Friday, and after changing flights in Washington, finally landed at Manchester airport at 6.30am on Saturday morning.
We went back to Grandma and Grandpa's house and after a few hours in bed, dragged ourselves up feeling rough! We had a lovely 24 hours with them though, as well as having chance to catch up with James, Beth and Sam. However, the jet lag definitely set in and this morning we finally woke the children up at 11am, and even then Daniel rolled over and said 'Please leave me alone!'

This afternoon we made our way home to Cheltenham. After unloading the car we should have dealt with this.......

But in fact we decided to do this.......

We have tried to start as we mean to go on; despite Daniel's (and our) exhaustion we have imposed the rule that Daniel is banned from crawling from one room to another around the house, he has to get in his walker and walk. Therefore this evening, after finally being able to have a shower (the first since his hamstrings operation 12 days ago) he walked in his pyjamas to the tea table.  He later walked to the toilet and back.

We also started teaching him to turn himself round in his walker and transfer to his gamma chair (which goes up and down so can be lowered to the right height for him to sit down into it). Obviously at the moment he needs a lot of support transferring, but we are confident he will learn to do it and it will greatly help his independence once he can.

So, now we start our new routine, and we are all delighted to be home. Our biggest problem this evening is that we have been away so long that Rich and I can't remember where we have put some of the things we cleared away before we left. For instance Lucy will be having a packed lunch tomorrow at school because I haven't the faintest idea where we put the menu for school dinners!

I am planning to do updates every few days / once a week from now on, as I don't think there will be much excitement to report on a daily basis! I certainly intend to continue to record Daniel's progress regularly though, and we have great hopes as to what the next few months may hold in that regard.

Friday, 14 December 2012

Thursday.....our last night in St Louis

So, here we are - the end of our adventure in St Louis, although we hope it is just the beginning of a whole new journey for Daniel, and for us all. As I sit on the sofa in our apartment, with the chaos of packing all around me, I am not sure what to write to best summarise our time here. It would certainly be fair to say that some of the worst and best moments of my life have happened in the last five weeks. We have made some wonderful friends, who had made the same huge decision as we had, to bring their child here, to give them what they believed was the best chance. We have been humbled by the courage and determination shown by all these children, including Daniel himself, and we have experienced the joy of seeing him progress so much already. We owe a huge debt of gratitude to both Dr Park and Dr Dobbs, as well as the fantastic physios Jackie and Mike. All these people have given Daniel the start, now it is up to us, and to Daniel himself to ensure that we make the most of the opportunity and he fulfils his new potential. I must admit that thought is a bit scary, because while we have been here, we have been in a bubble, where we have been able to focus on the physio, and then fit other activities around it. Once home we have to find time to fit all that physio (and there will need to be a LOT of it) in around school, homework, normal home-life, and Lucy's activities, which the poor child has missed out on in the last five weeks. That said though, we are of course excited to be returning home, to our own home, friends, family and school (and normal food!)

We will also be forever grateful to the hundreds of people who made donations, ran half-marathons, bid in our auction, climbed Leckhampton Hill, wore 'funny feet' to school, sponsored somebody else, bought cups of coffee, baked cakes ........ the list goes on and on.  So many shared in the fundraising to give Daniel this chance, and we have been overwhelmed by the number of people who have also supported Daniel, and followed his story while we have been here. I hope that those who contributed in the fundraising in so many different ways might feel they have a reasonable understanding of how the bulk of that money has been used and the whole new path that lies ahead for Daniel. 

But.....I'm finding myself a bit emotional writing this, so I will get down to the factual stuff about what we have done with our last day. We had a slow start, since we didn't have therapy until 11am. It was our last session with Jackie, and we also had chance to say goodbye to Mike. There wasn't much hard work for Daniel, because it was our last session, so there was quite a bit of paperwork to go through, plus Jackie did the tests to measure the spasticity in Daniel's legs (this had also been measured at our pre-op assessment the day before the operation, for comparison). The big news was that Daniel now has ZERO spasticity in his legs, that's no abnormal muscle tightness at all! Look at all the noughts on this sheet!

You can see in this video clip that Daniel is just relaxed and checking his arms while Jackie is testing his legs quite vigorously!

She could also achieve a stretch in his hamstrings and heelcords which was more than ten degrees better than before surgery, and that is with him still being sore at the moment, and therefore without us being able to stretch him properly every day. Once he is fully recovered from the two surgeries and we can stretch him more firmly then we will expect an even better stretch.

Lucy also had her last session in the siblings' playroom; she made some antlers(!) and was thrilled that they gave her a special book of photos as memories of her time there. She will be taking it into school on Monday!

We should have come back to the hotel after therapy to pack, but being in denial about that, we decided to squeeze in a last zoo visit! It has been such a brilliant place, and at this time of year has been virtually empty. We picked a few old favourites to see, and also made it into the reptile house this time, to see the snakes and a Komodo Dragon, which Rich was particularly excited about!

So, this will be the last post for a few days. Tomorrow morning we will leave the hotel after breakfast, and set off on our long journey, just as Daniel and Lucy's friends at home will be finishing school for the weekend. Therefore I aim to update again in a few days once we are home and settled. Thank you again to everyone that has played a part in our adventure!

Thursday, 13 December 2012

Wednesday....12.12.12 (Cool date!)

Therapy was not scheduled until 2pm today, so we had a bit of a lie in, then just spent the morning doing Dan's exercises and a bit of schoolwork for Lucy. Then Dan set off for a walk along the corridor, although he didn't get as far as he wanted to, because we had to bring him back in for lunch. (Rich was actually hiding round the corner in this photo - we wouldn't be as far away from him as this implies because there's still every possibility that he could fall flat on his face!)

We unfortunately had to use quite a bit of the therapy time sorting out the walker, which has rather a drag to the left. The rep has now ordered new wheels for it, which we hope will sort the problem. We weren't too worried about the lost therapy time though because Daniel was quite tired and pale today, and we weren't sure he was ready for a 'full on' session anyway.

Once we did get going, he did some arm exercises, pulling out some stretchy stuff.....

Then some standing at the bench throwing balls into a net. He had to crouch down to pick up the balls before standing up again, which was tough, but definitely good for him. He also did some cruising along the therapy table, side-stepping along.

We went to pick Lucy up from the siblings' room to find her doing Yoga (yes, really! They had some sort of visiting yoga instructor in teaching the children.) Lucy had also made a brilliant Christmas snowman, of which she was very proud.

After therapy, and mindful of the little time we have remaining here, we went for a last visit to the Arch. The children once again had a lovely time in the museum and we watched the film about the building of the arch (which Lucy had already seen twice with Grandma and Grandpa and is fascinated by - I think she is going to be an engineer!)

Daniel again chose to walk downstairs tonight for food, and on arriving at the table, suddenly decided to try this.....

Don't think that he is standing independently here - he isn't! He is cheating, and leaning his bottom on his walker behind him. However, it is a mark of how much more confident he is getting in his walker that he had the urge to try it.

He also walked back again.....

....all the way back to and into the apartment.

Tonight at bed time he actually asked us to put his knee-immobiliser on! This is meant to alternate between legs, and holds the leg straight, effectively stretching the hamstring overnight. It can't be particularly comfortable, and we had not restarted it up to this point since the hamstring op, since his hamstrings are still a bit sore. However, we were really impressed that he actually asked for it tonight.

Tomorrow is our last full day here, and we have such a mix of feelings about leaving. We are hoping to enjoy our last day though, as well as practical jobs like returning our hire car, which has been great, and saying our goodbyes, not forgetting the need to get down to some packing!

Wednesday, 12 December 2012

Tuesday... only 3 more days...

Daniel worked really hard in therapy this morning. He had his first ever go on the treadmill! He was pretty nervous - I think the floor moving under your feet when you can barely walk is a bit scary. He was quite bent over, and Jackie was helping him move his feet (and of course the treadmill was going very, very slowly) but he got the idea and improved a tiny bit with every try. A treadmill is one of the pieces of equipment we will need to get for home. It is very valuable for children learning to walk because it keeps forcing them to put one foot in front of the other in rhythm, rather than doing a few steps and stopping.

He had a little sit on the bench with his feet hanging down and had to work hard to balance, but he managed it. We hope that before too long he will be able to manage sitting on a 'normal chair' rather than always needing to be strapped into a supportive chair.

He also did a lot of bowling at skittles. Firstly sitting on a roll (good for trunk strength because it wobbles under him so he has to work hard to balance).....

Then he had to do it balanced on his tummy over the roll and while bearing his weight through his  arms.....

....and finally while high kneeling....

He finished with showing off his walking to Jackie, since he has improved rather a lot since she last saw him on Thursday!

After therapy we went straight on to the Planetarium, which is part of the Science Centre, although we hadn't made it there in our previous visits. It was so quiet that we actually had a private viewing the in the huge dome, where we lay on mats on the floor looking up at the ceiling, and the children were fascinated. They also loved the lift up there, where they could play with all the switches etc and pretend they were blasting off into space in a rocket.

Once back at the apartment we had a rest and some playing time, before doing Daniel's exercises. Brooke then came to pick up Daniel so they could walk downstairs together for tea! They were both thrilled with themselves, and it was good for Daniel to be able to venture further that the corridor in his walker, including negotiating the elevator. They made it all the way to the Christmas tree in Reception.

We have only two therapy sessions left, and are determined to squeeze as much progress as we can in that time, before we set off home on Friday.