Thursday - post op day 14

A change of author for tonight, I'm afraid, as Helen has been rather ill all day. However, Daniel has done very well today not only in taking his new walker for a mini test drive in physio this morning but also for the sheer amount of time he has spent out of the apartment going straight from physio to the zoo and on to 'Walgreens' (the equivalent of Boots), being in his wheelchair (and the car) for longer stretches with admittedly some discomfort, but not pain.

Daniel did really well at his 'home' physio this morning before setting off to the hospital; we can see the difference the physio is making from day to day in the basics. For example, he was able to kick one leg two inches today, whereas he could only manage about an inch on Tuesday. And lying on his tummy, he can now nearly reach the Star Wars toy Death Star placed on his bottom with each leg!

In his session with Jackie at 11, physio was made fun as usual with some Connect4 and some shapes and puzzles, but the main event was the new walker. He tried really hard and did a great job.

Meanwhile, Lucy got to go to the Science Centre again and whilst it was only a brief visit, she really enjoyed the life sciences section which was very hands on and just brilliant. She spent most of the time with experiments that trick your brain but also enjoyed some quality 'math'....

Chris, Dan, Lucy & I then took a leisurely trip to the zoo, which was almost empty, for lunch and a wander about...

... before a quick bit of medicine shopping and home for a well earned rest, and a bit of kneeling up at the sofa (or 'couch' as now both children refer to it as) to play air hockey on the iPad.

Daniel has done brilliantly today, now exactly two weeks post surgery. Hopefully now having the walker will spur him on and we have an outside hope of getting his turbo splints tomorrow which would also be great (and involve him being able to go to the mall tomorrow to choose his first ever pair of regular trainers). We're taking Uncle Chris to the arch tomorrow on his last day and hopefully Helen will be well again.

Wednesday - post op day 13

This morning Rich and Chris took Daniel to therapy, while I stayed with Lucy in the hotel, to give her a bit of quality time. She is really missing her friends, and also the stimulation of school, and is also feeling the fact that Daniel is getting so much attention at the moment (despite our best efforts to balance it). She even feels it's unfair that we expect her to put on her own shoes and coat, dress herself etc, when we put Daniel's clothes on for him. That Daniel can't dress himself, and that is the reason we do it for him, doesn't make it any fairer in her eyes. Anyway, I was trying to give her some 'Mummy time', even though she then told me she had really wanted to go to the siblings' playroom! (She got her wish to do that later though).

So, I wasn't at the therapy session, but I understand from the boys that it all went well, with lots of firing at walls while standing and side stepping, more bike riding (and visibly stronger legs than yesterday), and also another go on the wheelie-stool (on which he had also improved).

Lucy and I caught the hotel shuttle to meet them in the hospital cafe after the session, before Chris and Lucy went off for a play in the siblings' playroom, followed by a trip to the 8th floor garden....

The amazing siblings' play room

The Olsen Family Garden on the 8th Floor

Meanwhile, Rich, Daniel and I set off to the 2nd floor for our appointment with Dr Tyschen, the 'eye man'. Dr Tyschen specialises in eye problems relating to cerebral palsy, and in our first meeting with Dr Park he suggested we may like to see him. We knew that other families had found him very useful, and also that UK children often return to St Louis at a later date to have surgery with Dr Tyschen. We also had several unresolved questions about Daniel's vision, and therefore we had decided we would like to go ahead and meet him. The appointment was fairly long and tedious, by the time they had done all their tests, including putting the drops in, waiting 30 minutes for his pupils to dilate etc. We then had our meeting with Dr Tyschen at the end. Ultimately though it was extremely useful.

He confirmed that although Daniel has a squint without his glasses, the glasses do correct it when on. With his glasses on he has very good stationary vision, and also has depth perception and 3D vision. In Dr Tyschen's words, Daniel has 'dodged a lot of bullets in terms of the eye problems he could have had with his CP'.  The problem that he does have is called 'gaze apraxia'. It has been repeatedly mentioned by Daniel's teachers that although he is in many ways good at reading, he has difficulty with scanning and fluency. We have also seen that he quickly becomes fatigued when reading, and Daniel himself gets very frustrated with what he calls 'word blindness', where he is reading and simply doesn't see a word until he has gone past it. I have raised the problem more than once at the eye appointments Daniel has at our local hospital every four months, and have basically been dismissed with the line 'His vision is fine with his glasses on'. Therefore it was great today to have it confirmed as a real problem, and unsurprisingly something directly related to his CP. In brief, his eye muscles move in the same way his arms and legs do, in that they are slow to react, and sometimes move jerkily. This means that scanning when reading is very difficult, and he will often move his head to compensate for his eyes not moving fast enough. His eyes will also sometimes jerk and jump forwards too far, which is why he misses a word. Dr Tsychen said he will also find reading very tiring. Anything that requires him to shift his gaze from one place to another, eg copying from the board, will be far more difficult for him than another child, and that's just in terms of his eyes, and ignoring the difficulties he has with writing etc. It's not something that they can fix, but he said Daniel will learn to overcome it to a certain degree as he grows older. From our perspective, as I said, it was at least useful to have it confirmed as a 'real' issue, and it is therefore something that both we and school can do our best to help him with, in terms of limiting the times when he has to shift his gaze, breaks when reading (Mrs E, I know you do that already!) and other strategies.

Dr Tyschen also said that Daniel would benefit greatly from laser eye surgery when older (but fortunately that's a decision we can put off for now) and we had chance to discuss the problems he has with recurrent styes on his eyes, and his suggestions to help. So, all in all, a useful appointment. Daniel was so wiped out by the tests, on top of the physio session that he actually fell asleep for most of the last appointment!

We were all a bit exhausted afterwards, and after a leisurely lunch at the apartment, Daniel and I gently went through his home exercises, while Rich, Chris and Lucy went out to 'Wholefoods' (a kind of Waitrose type shop), to get some more interesting food treats.

We have also continued to insert 'hidden physio' as much as we can, like....

....encouraging him to lift up his hands and balance while side sitting by letting him play on the phone.

......and only being allowed to play Angry Birds if high kneeling at the sofa.

Therapy is not until 11 tomorrow - so we get a lie-in! Great!!

Tuesday (post op day 12) - bath day!!

Today started well - because Daniel had only woke up ONCE in the night - hooray!! Let's hope he can manage that again tonight, then we will have to introduce the night knee immobilisers, and probably mess him up again, but we will take that as it comes...

Anyway, we had therapy with lovely Jackie at 9 (another rushed breakfast first) and Lucy dragged Chris off to the siblings playroom. We lost a chunk of the physio time because Daniel needed the toilet in the middle (which is not straightforward or quick at any time right now, and even more tricky when we are out and about). However, apart from the lost time, it all went well, highlights being...

1) He did a LOT of standing (with quick 'sit down' breaks every time he got tired), while throwing balls into a net.

2) He went into the big physio gym, on the totalgym equipment, to work his legs

3) He went on the trike and rode all around the 4th floor. He has a trike at home similar to this, and pre-op could ride it freely himself on the flat. Today, being much weaker, he needed a bit of help, but did manage short bits independently. We were still really happy because this time last week they had tried him on the trike and had to take him straight off again because he screamed in agony from his back, so today was certainly an improvement on that!

After therapy, we came back to the apartment for a rest and snack, and then tackled his home exercises. He again made a slight improvement on yesterday, and below is today's exciting bit of video. This is him working his abductors (wearing his knee immobiliser to keep his leg straight) and it is another movement he has never previously in his life been able to do! If you have the sound on, you will catch the strains of Elton John, who now seems to be the permanent choice of accompaniment for the home exercises!

In the middle of that session, with a bit of encouragement, Daniel also pushed himself up into side-sitting. He wasn't able to take his hands off his knees and balance, but it is another bit of progress back towards his pre-op level of function (he could do this before).

After lunch we introduced Chris to the delights of the Galleria Mall, and then came back for the Social Evening at the hotel, which gave us chance to catch up with three of the other SDR families from the UK.

After tea, we tackled THE BATH! Today was the first day for almost 2 weeks that Daniel has been allowed a bath and we were keen to take advantage of that and make him clean again (although Daniel was a bit sad to lose his Mohican hairstyle). The bath was not straightforward because he can't sit well enough at the moment to sit in the bath on his own, and sitting direct on the bumpy bath mat - even supported by us - hurt his back. So in the end, he had to sit on my knee in the bath, and we then tipped the water over him to wash his body and his hair. I think he was happy to be clean afterwards, and ready for bed. We did wimp out of taking the big plaster off his back though, since it seems to be very firmly attached. I think we will leave that job for a few more days.

Clean at last!

Tomorrow, we have therapy again at 9am, then the appointment with the 'eye doctor', and various eye tests afterwards (three hour appointment - could be hard work). I'll explain what that's all about when I update tomorrow.

By the way, I have mentioned before how much we value the messages etc. It is incredible to us the number of people from home (and elsewhere) who seem to be following Daniel's progress and literally willing him on. Thank you.

Monday - post op day 11

Well, today has been a seriously exciting day! Not only because Uncle Chris arrived, and we haven't seen him since Easter, but also because Daniel has made a clear bit of progress.

We have now properly adjusted to St Louis time and that, combined with the rubbish sleeps we are having, means that we are all having trouble waking up in the morning! Therefore, we ended up having to get breakfast down our throats in about 5 minutes, and dashing straight out to the hospital for 9am therapy with Mad Mike. We had been reliably informed that Mike is rather partial to Cadbury's chocolate, and a lot of the UK children bring it over for him. We have brought over a bag of mini-bars, so Daniel can take Mike one each session, and it went down well! We then had a tremendous therapy session, during which Daniel achieved.......

Four point kneeling...

Some nice standing against the therapy table....

Sitting on a 'normal' chair......

.......and some really amazing stepping! As you will see, he was being supported under his bottom and with his hands held, because his legs are still like spaghetti, but his legs did not cross over AT ALL, and he did not stand on his own feet EVEN ONCE! This is the result of the tightness in his adductors being removed.

Towards the end, Mike also tried him on a wheely-stool, where Dan had to use his feet to push himself backwards, or pull himself forwards. He found this really tricky and was extremely tired after the session, so didn't manage much, but did do a tiny bit.

After physio, we went to the airport to collect Uncle Chris, who had just flown in from New Jersey. The children were so excited to see him, and keen to point out the sights of St Louis as we drove back to the hotel.

They also took full advantage of him as a new play  / reading partner over the course of the afternoon! (I also took advantage of this and went for a nap!)

Rich also did all Dan's home exercises again, and we were very excited to see that today Dan was able to attempt one of the exercises he couldn't do at all yesterday, one that involves kicking. Before the operation Daniel could only move his legs from the hip, he could not flex his feet at all, or wiggle his toes, or kick outwards from the knee. This is why it is so thrilling to see him start to do this! Have a look!

And, flushed with success, when talking to Chris, without thinking about it, he got onto his hands and knees and crawled a tiny distance (he could do this before the op, but this is the first time since).  Needless to say, I rushed for the camera!

So, some real progress.  I know there will be more 'lows' to come, plus we still have a second set of surgery to face next week (Rich and I are in denial about that at the moment), but we are certainly looking forward to seeing what tomorrow brings.......

Sunday - post op day 10

We had felt a bit disappointed with ourselves yesterday, that despite having a day with lots of time, we had still not managed to finish all the home exercise program, Therefore today we started as we meant to go on, and had Daniel high kneeling at the sofa as soon as he got up (and before we got him dressed)!

After breakfast we then did his full set of stretches and strengthening exercises, which took nearly 2 hours (although some of them also have to be repeated again in the evening). We have also taken every opportunity to have him weight-bearing through his legs today. It's tough, and he does a fair bit of complaining, but little by little he is improving.

We really needed to do a grocery shop, but the children were desperate to go to the zoo (yes.....AGAIN!) so we called there on the way. It is so huge that we have still only done about half of it, and today we just let the children choose one thing each that they would like to see. One of the changes that has become obvious since Daniel's operation, and was very evident at the zoo, is that he no longer needs the straps on the footplates of his wheelchair, because his feet no longer shoot off the footplates. Before, whenever he was at all excited his legs would go rigid and his feet would fly off the footplates, which would also cause his bottom to slide forward in his chair. This would happen a lot at break times at school, as well as other times, so he had straps to keep his feet in place. Now, he doesn't need them as his feet sit there quite nicely on their own.

 

We then went on to Schnucks (the grocery store), although in true Morgan style we were running late by that point, so had to rush round grabbing what we could, before setting off back to the apartment to cook. It's quite a long walk from the car park to our apartment on the 4th floor if you have lots of bags of shopping, plus a wheelchair, and Daniel's toilet, which we have to take everywhere in case he needs it, because he is too weak at the moment for us to hold him onto a normal toilet. Therefore, we borrowed the luggage trolley from the hotel to transport all the shopping, the toilet, and Lucy!

After cooking and eating we finished off the evening section of Daniel's stretches, while listening to music..........

.......and then he just relaxed to a bit of Elton John!

Tomorrow at 9am we are back with Mad Mike for physio at the hospital, which we are looking forward to. We are pleased to have a full week of therapy coming up, since last week was rather fragmented, with us only being discharged on Tuesday, then the break for Thanksgiving on Thursday. We are also all excited about the arrival of Uncle Chris, who is coming down from New Jersey tomorrow for a few days.

Daniel is definitely in less pain now, and is coping for fairly long periods in his wheelchair, although he does start to get sore after an hour or so. He is still struggling in the car seat, and can only manage about 10 minutes in that before he says his back is hurting. He is also still unable to sit on the floor - we are not sure whether that is weakness or pain related, but we are keen to try and crack that this week. The nights are the same as ever - I'll let you know when that improves! All in all though, we are feeling positive about the week ahead - bring it on!

Saturday - post op day 9

It's just a quick update tonight because we have had quite a lazy day and there's not much to report. This morning we said a sad farewell to Grandma and Grandpa, and Rich and Lucy then took them to the airport, while Daniel and I did the first batch of his home exercises. There is no outpatient therapy at weekends, so we were able to spend quite a bit of time doing the stretches and strengthening exercises, although we still didn't manage to complete them all in one go. Daniel was keen to do one of his school reading books afterwards, which was a really positive sign, as he hasn't felt up to doing that at all since before his op.

Even once Rich and Lucy returned from the airport we tried to incorporate physio activities as much as possible, for instance playing while high-kneeling at the sofa, and also trying to get him to weight-bear at any opportunity. We are keen to get this improved as quickly as we can, not only because he cannot possibly move towards going back into a walker if he can't even bear his own weight; also because things like the toileting are incredibly difficult when you combine the fact that we can only lift him if our hand is underneath his bottom (to avoid damaging his back), with the need to pull down / up his trousers.  We really need him to stand and bear his own weight, even if only briefly, to allow us to do that.

Practising weight-bearing

The children played for a while before lunch, and then after eating we went down to The Galleria Mall again (and ended up in The Disney Store, where the children each spent a bit of the money that various relatives had given them for the trip before we left home).

Now they are both fast asleep. Daniel has managed the whole day with only Calpol as pain relief and with not too much in the way of complaining, which is great. If we could only sort the nights.......

Friday - Post op day 8

It has been another good day! The night was as awful as ever, and Daniel was awake for a big chunk of it, complaining that his legs were tickly / itchy. The physio gave us a good explanation of this today, to do with the nerves that have been cut etc. I think it's fairly normal, but the knowledge of that doesn't help him much in the middle of the night. He also had the usual problems with waking repeatedly, and needing rolling etc.

However, we allowed ourselves to sleep in this morning, since we didn't have therapy until 11, which was a nice relaxed start. After doing Daniel's exercises we made the trip down to the hospital, which is very easy now we have our hire car. Lucy came with us, as she was very keen to get in the siblings playroom, a complimentary and secure childcare facility for siblings (as you might guess from the name) at the hospital. It also gave Mum and Dad chance to get some of their jobs done before making the journey home tomorrow. Today we met Daniel's secondary physio Mike, known as 'Mad Mike' (someone we had heard lots about before we came over, since his fame crosses the Atlantic!) He was great and his confidence that Daniel could try certain things seemed to give Daniel confidence too. For the first time we managed to make the entire trip to and from the hospital, including the physio session, transfers in and out of wheelchair, and in and out of carseat, without him complaining he was in pain. Admittedly we had given him both ibuprofen and calpol first thing, so that will have had something to do with it, but it was a very good sign of progress.

During the therapy session Mike had him attempting  to climb on the therapy table (basically Mike did most of the work, but at least Daniel was up for trying). He also did some half-kneeling (like when you go down on one knee) while playing Connect 4, a bit of rolling, and at the end, some stepping back into his wheelchair (although with Mike bearing about 95% of Daniel's weight!) We also had chance to talk quite a bit about our queries about the home exercises, having first tackled them yesterday.

 

We went back to the hotel for some lunch, and then went out this afternoon to the Science Centre, a brilliant and very 'hands on' place, aimed at children. Like everywhere else here, it is free, and we all enjoyed it. There were massive moving models of dinosaurs, a tornado, fossils, and amongst other things lots of opportunities to build.

We built big arches (very appropriate for the St Louis theme....)

Also small arches.....

And in all cases, once we had built them, we knocked them down.........

Amazingly, considering our previous problems with wheelchair time, after 2 hours we had to drag Daniel away. He would happily have stayed longer.

We all ate in the apartment together this evening. Tomorrow we have to say goodbye to Grandma and Grandpa, as they travel back home. They have been an invaluable source of emotional and practical support to us over the last two weeks and we are incredibly grateful for everything they have done. We will certainly be sad to see them go.

Thursday - 1 week post op - Happy Thanksgiving!!

Today it is the Thanksgiving national holiday in the US. This has been slightly odd for us, because of course we are not used to celebrating Thanksgiving (in fact Mum had to buy the children a book to explain what Thanksgiving was all about, since none of us knew). The main impact for us was that there was no outpatient therapy today, so we went down to the huge St Louis Thanksgiving parade (one of only four held across the USA). It was great fun, and very American!

Daniel loved all the little cars, and the huge inflatables, but I think Lucy was most taken by the people who walked along throwing sweets to the children!

 

Grandpa also decided to join in with the cheerleaders at one point, with no embarrassment! (Well, he was not embarrassed, at least!)

The parade was all done and dusted by 11am (having started at 8.45) so the Americans could go home and get their turkeys in the oven. We, however, just retired to the hotel for a coffee and a rest for Dan. Then, after some lunch, we went down for another hour at the Zoo (big advantage of it being free, that we can pop along for just a short time if we wish). We went principally to force Dan into his wheelchair for another chunk of time. He did well at the zoo, but did then cry all the way home in the carseat that his back was hurting a lot.

Once back, and after another rest on the floor, we finally tackled his 'post-discharge exercise program'. This is meant to take about an hour each day, on top of the physio at the hospital. We should have started doing it as soon as we were discharged on Tuesday, but Daniel has been in too much pain when laid on his back to do so. However, we did get down to it today, and will do it every day from now on.

Daniel tried hard, although it is tough to see the fact that he has no strength at all in some muscle groups, because in 6 years they have never been used. Spasticity groups muscles together, so it is only now the spasticity has been removed that we can see muscles working separately, and the fact that some of them currently don't work at all. There is so much strength-building that needs to be done. For instance, the reason why he can't currently roll over from one side to the other side (something he could do pre-op) is because with the spasticity removed he has no strength at all in his abductors (outer thigh muscles) so he can roll his torso over, but his legs don't follow because he doesn't have enough muscle power to drag them over. (If you imagine what you would do to roll over yourself, this will make sense). He is quite frustrated by this. I think it is also part of what is making our nights so awful (the fact that he can't roll over in bed when he gets uncomfortable, so wakes up). At the moment we go around in the day time with that feeling you have when you have a new baby, where you are constantly so sleep deprived that you sometimes feel light - headed.

So, tomorrow everything here gets back to normal after the public holiday, and we will be back at the hospital for physio in the morning. It is also our last day with Mum and Dad here before they fly back on Saturday, so we want to make the most of it.