St. Louis Diary

9 August 2010

2010-08-09T09:24:00.001-07:00

Well we're all packed and ready to go. St Louis is a great place that we'll never forget.

I will post before and after footage of Elodie when we get back.

See you all soon x

8 August 2010

2010-08-09T09:19:00.000-07:00

We had a quiet day today, just getting things ready to leave tomorrow. We went for a swim this morning and Elodie was standing on the steps and jumping in on her own. She would never have been able to stand in water without falling before surgery. We keep noticing little changes all the time and it's amazing.

This evening we met up with all the new families and Rhys went and got Logan and his family from the Metro Lofts so they could meet everyone too. It seems strange that they're all just starting their journey and we're now coming to the end of ours. Elodie had a great time playing with all the other children and Lucas was a monkey emptying crisp bags all over the floor.

We're definitely going to miss spending time with other people who understand what we're going through. It's been a great trip but I think we're already to go home now.

7 August 2010

2010-08-09T09:02:00.000-07:00

This morning we said goodbye to Callum and his family. I felt quite sad because we've become close to them especially because Callum had surgery on the same day as Elodie. Hopefully we'll all be able to meet up again sometime soon.

Today we decided to go to the Zoo with Mandy, Adam and their 4 kids. We had a brilliant day and managed to get around the whole Zoo. Elodie got soaking wet when she decided to stick her head under a fountain.

We can really see the difference in her confidence since the op. We saw hippo's, all the big cats, elephants, some angry gorilla's and some penguins.

We were then all starving so we went to the Cheesecake Factory, where the food is amazing and the cheesecake portions are huge. It was really nice to spend the day with the Fuller's and we'll miss them loads when we leave.

6 August 2010

2010-08-09T06:07:00.001-07:00

Today was Elodie's last day in physio. Michael gave her a card with Elodie Wilton 3 and half weeks post op written on, and he filmed her for Dr Park. She played up a little bit to begin with but then she was happy to show off! After Michael had finished filming he let Elodie and Lucas go in to the play gym and just play around for the whole session.

They had a great time. Michael did Elodie's measurements and he said that she has the best hamstring range he has ever seen. Her heel chord ranges were 27 and 25. You need at least 20 to be able to walk flat footed. He said this meant that once Elodie builds her strength up she will be able to walk heel to toe. It was really sad saying goodbye to everyone and we can't wait to come back in a year and see how Elodie will have progressed.

Tonight we had a BBQ with all the families as it's Callum's family's last night and our last weekend. We had a great night and Elodie and Lucas had a really nice time playing with all the other kids.

5 August 2010

2010-08-05T19:15:00.000-07:00

Today we missed physio oops!!! We thought it was at 11am and it was 10.30am when I realised it was actually at 10am. Rhys phoned the hospital and spoke to Joan who was really good about it and said she'd let Michael know. We then got a call from Michael about 10 minutes later asking us to come in at 12. They are so good here, he probably worked through his lunch for us bless him.

We had Lucas with us today so I took him to the hospital cafeteria for lunch while Rhys took Elodie to physio. Elodie was really good again but there were a few tears after she fell off an obstacle course that Michael built and landed on the treadmill on her back. Luckily it was below her incision but will probably leave a bit of a bruise. Poor Michael felt really bad but I think all the Cadbury's Dairy Milk we gave him made him feel better!

This afternoon we went to St Louis Mills, which is a shopping outlet. The place was massive and would probably take a few days to go around. Elodie and Lucas went on the carousel, which Elodie loved but Lucas hated and then we tried to eat at an American Diner style eatery but the service was really bad so we left.

Elodie is having a great time playing with the Fuller family from Isle of White and it's really difficult getting her to leave at bedtime. As I'm writingthis at 9pm she is in the hotel swimming pool with Rhys, Harvey and Chloe. I think she's going to really miss having so many children around to play with.

Tomorrow is our last day of physio, I can't believe that it's all almost over. We had such a build and now we've gotten through it, come out the other end and we'll be home next week.

3 August 2010

2010-08-05T18:57:00.000-07:00

Elodie had a brilliant physio session today with Lorie. She did so many things and Lorie was really pleased with how she's been progressing. Elodie is struggling slightly with the pollywog insoles they've prescribed and her new shoes that are a size too big to accommodate the insoles. Whenever she wears them she seems to revert back to toe walking and in toeing which is really frustrating. Lorie had a look at the insoles and managed to alter them so that they're more comfortable for Elodie. It seems to have worked.

This afternoon we took Elodie and Lucas to the Magic House. They had a great time playing with sand and water and climbing up and down things.

It was a good thing it was all indoors as today is the hottest day they've had here in St Louis for 3 years. It was 103 and so completely impossible to stay outside for long. The kids loved having a good play (I think they're missing their garden) and it meant that Elodie was really active and got to use her muscles loads. We still have to go to the City Museum and back to the Zoo, as we hardly saw any of it last time.

2 August 2010

2010-08-03T08:04:00.000-07:00

We had physio with Michael today. Elodie worked hard at times but was easily distracted and often refused to do the exercises. Michael said it's probably because we're asking her to do things that pre op she could do but now she finds difficult. At the moment Elodie has gone backward a bit but Michael did say that once she's able to do more she'll realise how much easier it is and then she will progress really quickly. We have to keep reminding ourselves that she only had the op three weeks ago and she is almost back to her pre op strength already.

This afternoon we took the kids to Lafayette Park for a run around but it was so hot we only managed about half an hour and then came back to the hotel for a swim.

We hired a car today so that we can get around more in our last week. It's great that we've had free shuttles at the hotel but they only go within a 3 mile radius and the hotel is so busy now that we have to wait ages at times.

We're trying to make sure we go places where Elodie gets a bit of a work out without realising it. We're thinking of going to the Magic House tomorrow, which has soft play, sand pits and climbing frames. The heat wave is on its way again so we'll need to find things to do that are indoors x

29 July 2010

2010-07-31T08:44:00.000-07:00

Rhys and Pam took Elodie to therapy today and she did some good work on the treadmill and leg press. After about half an hour she started to get tired though and was giggling and being silly. It's really hard trying to make her understand that she has to work hard now to get the most out of the surgery. Hopefully tomorrow will be better.

28 July 2010

2010-07-31T08:24:00.000-07:00

Today we said goodbye to Jordan and his family. It's quite sad seeing people go because we've all become quite close. It's going to be quiet here without them and Fran and Caroline who left yesterday.

Elodie had a fairly good day in therapy but she does seem to be getting bored already. She keeps wanting to do her own thing and won't listen to instructions, typical Elodie!

It was Mum's last day today so this afternoon we went to the zoo. It was 40 degrees so really unbearable and it meant that we could only go around a small part of the zoo. The kids had a great time though and got to stroke the guinea pigs, although Lucas took a fistful of hair out of one of them! Elodie brushed a goat and tried to stroke a sting ray but got scared every time they swam close. Before leaving Elodie got a tattoo of shooting stars, which she loves.

This evening Scott and Lisa and their 2 boys came to visit us from Kentucky. It was great to see them and Elodie and Lucas enjoyed playing basket ball with them.

We've got less than 2 weeks left now, I can't believe how quickly it's going.

26 July 2010

2010-07-27T08:10:00.001-07:00

What a brilliant day we've had today.

We started with a physio sessions with Michael. Elodie worked really hard on the treadmill, the swing and the pedal bike. Then we all had a race on the bum boards, which are really hard work. We then met Pam, Mum and Lucas for lunch in the hospital cafeteria before going back up for our post op appointment with Dr Park.

Dr Park got Elodie to do some walking and running then he tested her leg reactions and did some heel chord stretches with her. He then told us that Elodie will need physio twice a week for 6 months and then once a week for 6 months, she will then no longer need any therapy! He said that Elodie will have no disability at all, she will be completely normal. I asked the important question...'Will she be able to wear high heels?' and Dr Park said that she will definitely be able to wear high heels!!

We always knew that Elodie would benefit from this surgery and originally Dr Park thought her walk would be close to normal afterwards, but to now be told that she will have no disability is just amazing. We can't thank you all enough for your support in getting us here, you've helped us to change Elodie's life. She won't ever remember having to struggle with her mobility and for that we are really grateful.

Here's a picture of the good man himself:

25 July 2010

2010-07-25T08:03:00.000-07:00

Hi everyone, sorry for the silence we've been really busy with therapy. I can't believe how well Elodie is doing. It's still not 2 weeks since the operation but I'm happy to say that Elodie is now walking completely unaided with straight legs and flat feet. The therapists have told us that we need to work on her thigh and bum muscles as that's where her weaknesses are since the surgery. It's these muscles that will help to keep her feet straight as she is still wanting to turn her feet in when she walks. Elodie has been working really hard in therapy and has now progressed to walking up and down two flights of stairs, peddling a bike on her own and climbing up the climbing net and going down the slide all on her own.

We're in the middle of a heat wave here. Yesterday it was 40 and really unbearable. Rhys' cousins from Wisconsin were down as well as Mark and Pauline. Rhys' cousin Jane paid for us all to take a trip up the Gateway Arch, which is 630ft high. My Mum, Pam and Pauline refused to go up!! We had to sit in these tiny capsules that carried us to the top where we could walk around and lay on our stomachs looking out over St Louis and the Mississippi River. I thought it would be quite scary once we were up there but it didn't actually feel that high. We all had a great day but it was good to get back to the hotel and out of the heat.

Because it's so hot here we've also been having amazing storms. The thunder was so loud last night but the kids didn't seem fazed by it. This morning Lucas was up at 5 crying and fussing and it looks as if he's got a cold! I just hope we don't catch it. He's quite happy though and is having a great time emptying the kitchen cupboards!

Michael, one of the physio's is back off holiday so tomorrow Elodie will have her therapy session with him. He is really crazy and the kids absolutely love him so Elodie is really looking forward to it.

Thanks for all the lovely messages we're getting on here, it's great to hear from you all and Elodie really enjoys me reading them to her.

I promise I won't leave it this long again x

19 and 20 July 2010

2010-07-20T19:16:00.000-07:00

Elodie has had a brilliant 2 days. Yesterday she started increasing the amount of time on her feet and has started getting more and more confident. In therapy yesterday she did a lot of walking and had great fun playing with the green silly foam, which is just like shaving foam.

Today she had a great therapy session and did lots of work on the treadmill and leg press machine. Lorie the therapist is really pleased with her progress and said she is doing brilliantly. She was also measured for her pollywoggs which are basically insoles, which should help support her a bit more than normal shoes.

Because Elodie has been so good over the past few days we took her to the Build a Bear factory, where she made a pink teddy and chose all pink accessories. There's a surprise! We wanted to go to the toy shop to buy some toys for Lucas but Rhys validated all our train tickets which meant we had two hours to get there, shop and get back! We did buy Lucas a Zhu Zhu hamster though, which he loves.

After social hour this evening we had some drinks with the other British families and Elodie decided to try walking on her own! She was able to take a few steps before getting too wobbly, but it's amazing how quickly she's progressing.

Tomorrow Rhys is going to a Cardinals game with John and Steve. All three of them have bought Cardinals t-shirts for the occasion! This means that me, Emma and Sharon have to have a girls night. I feel a night at the casino coming on x

18 July 2010

2010-07-19T10:38:00.000-07:00

Therapy this morning was difficult and ended with Elodie having a massive screaming tantrum. In the end we just had to take her back to her room. We then packed up and got our discharge papers and then Elodie said 'Are we going back to America now?' She thinks the hotel is America!

Elodie was pleased to be back at the hotel and Lucas was really happy to see us all. We managed to persuade Elodie to have a lunchtime nap and when she woke she was like a different person. She was happy and practised her walking all afternoon. She even tried standing on her own and managed a few seconds.

This evening we met up with the other families for a drink to celebrate John's birthday (Jordan's Dad). Elodie had a really good night playing with all the other kids. It's amazing how much stronger she is, she just seems to get stronger and stronger every hour. Being back in the hotel has made a big difference to her and I really think we're going to see her progressing quickly now. Elodie has also stopped needing nappies which is great because the Dr's warned us she could go backwards a bit.

After this mornings nightmare therapy session Elodie has ended up having a really good day. I just hope she carries it through to tomorrow's session x

17 July 2010

2010-07-17T17:07:00.000-07:00

Elodie had a really good day today. Her first therapy session she got to play basketball with Callum and even did some walking. We had to hold her waist and hands as she is very weak and shaky, but she managed a good distance. It was amazing to see her legs so straight and her feet flat. They then finished the physio sessions with some bike riding which Elodie loved. Physio is completely different here, its all based around play so the kids love it.

Elodie then had a short rest before having her second physio session of the day. This time she got to paint, knock over building bricks, play play dough with Callum and then a few bike rides as well as some walking. Its amazing how much stronger she is compared to this mornings session.

When we got back Nanny and Lucas arrived to spend a few hours with us. We got to take Elodie down to the cafeteria for food, which was a nice change and then Elodie went to the roof garden with Nanny to throw some pennies in the wishing well. They can only spend a few hours each day with us because Lucas is too crazy and just demolishes the place! All the nurses love him though and think he's really cute.

Elodie has had a couple of tearful episodes again today but they seem to be linked to times when she wants to do something but realises she can't anymore. It's now clearly obvious to her that she's lost her mobility and I think she's a bit angry with us. I've told her it won't be long before she's strong again and able to run around the place, but I don't think she believes me right now.

This is our last night in hospital. Tomorrow we get an early physio session then we should be out of here by 11am. Hooray!!

16 July 2010

2010-07-16T18:45:00.000-07:00

Elodie had a really good night sleep last night, but then it all went down hill. We had her first therapy session but I think she was afraid of hurting her back so she was really teary. We were shown how to move her from her bed to her chair and then we got to take her to the roof garden. She loved getting out and the garden is such a great place, but Elodie was very weak and tired so we didn't stay out for long. Unfortunately Elodie refused to sleep and had a massive tantrum, she then cried more or less all day and all through her afternoon therapy session. Michael, her physio, said it's normal for her to be like this after having surgery and spending so long on her back. He said she would get stronger and stronger every day. It was amazing to see the range Elodie now has in her legs but I felt really sorry for her because she asked if she could climb on the climbing frame after her stretches. Michael supported her while she tried to stand but she got really upset because her legs feel so different and she can't walk anymore. Dr Park said he thinks she'll take a few steps on her own in the next week so that will be good.

It was Nanny's birthday today so Elodie enjoyed singing Happy Birthday and helping Nanny open all her cards. Once Elodie is discharged we'll all go out for a meal to celebrate her birthday properly.

Elodie has slowly gotten back to her old self this evening so we got her out of bed and took her to the garden again. She really enjoyed herself and already her strength has increased since this morning. This morning she could hardly hold her head up but this evening she was sat up straight and easily able to keep her head up. I'm hoping she'll get a good night sleep tonight so that she can have a good therapy session in the morning.

Today Daniel and his Mum came up to the ward after Daniel's SDR surgery yesterday so we took Elodie to the gift shop to by him a balloon. She chose the Elmo one but he was asleep when we took it to him so hopefully she can meet him tomorrow.

Only 2 more sleeps till we're discharged, can't wait!

15 July 2010

2010-07-15T17:35:00.000-07:00

Elodie had a really good night last night. She woke a couple of times but only because the nurses were in and out. This morning they turned her painkillers off so all she's had all day is the valium, which they're stopping tonight. She will still have oral medication to take before her therapy sessions to make sure she's comfortable. She's having her last valium dosage through the IV at 8pm and then they're removing the IV line. This will be so much better for her as she'll be able to play her ds and do her sticker books. I thought it would be difficult keeping her entertained and stopping her from getting up but she just seems to accept that she has to lie down for a few days. She has hardly complained at all.

Today Elodie had a bed bath and the nurses washed her hair, which she loved. It must have exhausted her though because she slept for 3 hours after it! She is eating and drinking a lot more and enjoyed 2 ice lollies today.

Dr Park came to see us and he was really pleased with how quickly she is recovering. He checked her legs and was very impressed that Elodie was kicking him away! He wasn't impressed with the marks on her cheek though, I expect someone will be in trouble tomorrow!

Tomorrow Elodie will have her first physio session. In the morning it will just be getting her out of bed and into her pushchair and then in the afternoon she'll start her exercises. I'm really looking forward to getting her out and about, I'm just hoping she's not in too much pain.

We gave Elodie a pink MP3 yesterday and she's spent most of today listening to it. At the moment she's singing Single Ladies (Alvin and the Chipmunks version!) at the top of her voice. I can't get over how good she's been through all of this. She just seems to accept it all without question. She's been such a little trooper and we're really proud of her x

14 July 2010

2010-07-14T05:47:00.000-07:00

Elodie had a good night. It was tiring as she probably woke up every hour and a half or so but she didn't have any pain. She either asked to be turned or complained about her catheter so in the end they removed the catheter at 3am and she's had a nappy on ever since. She wasn't too fussed about weeing in it to begin with but she's fine now. She has started to ask if she can get up and has been a bit teary when I've said no but she usually goes back to sleep quite quickly because of the meds she's on. She has very few muscle spasms and only once complained about her back, but I think it's more of a funny sensation rather than pain. Elodie is really moving her legs and feet around a lot now and keeps wiggling her toes. It's amazing how much looser her legs are. Erin our nurse said that she's been amazed how good Elodie's first night was and said she's by far the easiest SDR patient she's had as far as pain management goes. She said that Elodie is a real trooper. She's been so good and brave and we're really proud of her. Everyone keeps telling her how cute she is and as usual she's been agreeing with them!

We should be moved to the ward sometime today which will be good. All in all the process has been brilliant and we're really pleased with the care Elodie has had.

We're on the ward now and Elodie has a private room with an en suite bathroom. When we arrived we were all given a tub of Ted Drewes frozen custard, which is the best St Louis ice cream. There was no way Elodie was missing out on it, so she had a good few spoonfulls and then had some cheerios and 3 honey crackers. She then had some sprite. They normally wouldn't start eating until tomorrow but the nurse said if she's asking for food then feed her! She has managed to keep it all down so she's definitely over the vomiting bit. Although she ended up being sick quite a bit last night, it was a good thing because she did a lot of coughing to clear her lungs so no chest problems at the moment.

Elodie has had a really good day today with lots of awake time. Considering everything, she's in quite a good mood and seems comfortable. Hopefully we'll get a bit more sleep this evening x

13 July 2010

2010-07-13T19:16:00.000-07:00

We were up early this morning as we had to be at the hospital for 5.45am.

We were taken straight to a cubicle where Elodie settled herself down on the bed. She wasn't very impressed with the huge fish pyjamas they made us put on her! We were seen by about 6 different nurses and doctors who all checked and double checked her stats to make sure she was good for surgery. Its amazing how much time they spend just making sure we're happy with everything and answering our questions.

They then brought Elodie some medicine and a little bit of apple juice to hide the flavour and almost immediately she became quite woozy. She was really funny and kept going 'raaagh' and then giggling. They came to take her then, which was hard and we got a bit tearful but she was too out of it to get upset, but she did manage to give us a wave and a smile.

We then went to our waiting room and got a call from the OR about half an hour later letting us know that Elodie was fine and they were starting. They told us to go and get some food and they'd call in an hour. They called again at 9am then again at 9.45 and at 10.30 Dr Park walked through the door and told us it had all gone perfectly. I was dreading the waiting but actually it didn't feel that long at all and because of the constant updates we weren't at all anxious. Sharon and Steve then had our room to wait for Callum who was having the surgery after Elodie.

At 11am we got to see Elodie in recovery. She was drowsy and her face was a little bit swollen. She had a raw patch of skin on her cheek and chin where the skin must have been ripped of with the plaster. It looked sore but apart from that she was great. She managed to smile and wave before she was taken up to intensive care. We waited about another half an hour before we were allowed to see her.

All afternoon Elodie has just been sleeping only occasionally waking for a very short time. She isn't in any pain at all but has been sick a couple of times, which is normal. Her oxygen was stopped at 7pm and although she had a slight temperature it is now going down without any medication. They have increased her fluids as she hasn't been weeing enough but apart from that they're really pleased with her. Callum is also doing really well and they think they should both have a good night.

It's a little bit difficult at times when Elodie is awake because she's been trying to pull her catheter, but because of the anaesthetic and valium she is quickly falling asleep.

We can already see the benefits of the surgery. Her ankles are much looser and she can wiggle her toes. I asked Elodie if her legs felt any different and this look of realisation crossed her face and she nodded. We're really looking forward to the day when she can get up and start strengthening her legs.

There's a family room on this floor with relaxing chairs, pillows and duvets so Rhys will sleep there tonight and I'll sleep in the room with Elodie. Hopefully she'll have a good night tonight and then we can get her up on the ward tomorrow x

12 July 2010

2010-07-13T19:06:00.000-07:00

In the hospital for 9.30am today for Elodie's pre-op assessment. Everyone is so helpful and friendly here. You don't feel like you're putting anyone out.

Elodie had a therapy session with Deanne who got her to do loads of different exercises. It was all filmed so that they can look back in a year to see her improvement. We then met Dr Park. It was amazing to finally meet him. He said he felt that Elodie will recover quickly from the surgery and will walk more or less normally and will be able to take part in all sports and physical activities. He did say that her right heel is much tighter but he thinks we'll get away with just stretching it over the next couple of years.

We met Joan and James both of whom were great. All in all we had a great day and feel really calm and confident about tomorrow.

Tonight we had our first social night at the hotel, which is basically free food and booze. Elodie had a great time playing with her new friends, especially Dylan who apparently is her boyfriend!! We finally got her to leave at 9pm and as she left she called out to Dylan "bye bye boyfriend". It was so cute.

Big day tomorrow so early night tonight x

10 July 2010

2010-07-10T20:20:00.000-07:00

We've had a really good day today. The breakfasts here are massive, I'm definitely going to have to start running soon! Elodie really enjoyed it and managed to eat:

2 pancakes with syrup

scrambled eggs

a bowl of cheerios

a waffle

chocolate milkshake

We decided to go to the supermarket and ended up spending $300! Everything is really expensive here. The kids wanted squash but they don't seem to sell it so we settled for something called Cool Aid, which is granules that you add to water. The only thing is it must have been full of sugar and additives because Lucas was running around like a lunatic, even crazier than he normally is!

Tonight we had a BBQ with all the other families who are here for SDR. It was really good to speak to parents who have already gone through this and those who are about to. I had a long chat to Jordan who is 14 and had the procedure a week ago. He was so positive and really set my mind at ease. I'm certain now that we're doing the right thing for Elodie.

Elodie had a great time playing with all the other kids on the basket ball court and didn't want to come to bed, although she was fast asleep as soon as her head touched the pillow!

Rhys has just gone to the bar to order some Long Island Ice Teas so I'll leave it there for today x

We're here!!!!

2010-07-09T18:07:00.001-07:00

Well we made it. It's been a long day and we're all shattered. Just ordered a chinese because we're starving and won't be able to shop until tomorrow.

We've already seen a few children who have already had the surgery but haven't managed to talk to anyone yet. It's all very real now.

We were given a pack when we arrived that James the coordinator had left for us at reception. We have to be in the hospital by 9.30 Monday morning for a full day of assessments and pre op. We'll try and have a couple of days to just relax now and maybe do some sightseeing.

The kids are already fast asleep and we're not far behind them!

It's good to finally be here.