Uncle Karl Needs Beer!

This morning we had a phone call from Auntie Jane, we called Nanny Lee, spoke to Nanny Sophie on MSN and had a call from Daddy – what a lovely start to the day & all before 9am! Daddy had just finished his lunchtime shift, when I asked him how many pints he’d had, he replied – None??? However, I’m far to clever for that, so I asked him how many bottles he’d had – that was a different answer – as if I’m stupid!!!

Today Libby’s rash was much better, her feet were still quite swollen and she was reluctant to weight bear for me but as we had physio, I didn’t feel the need to push her. Physio was with Beth and once again Libby worked very hard, you could see she was in pain and she needed to rest quite a lot in between exercises but I could see she was capable of a lot more than I think she is!! Again, we left there feeling very positive, although it’s still hard to imagine that we will get the results that Dr Parks has said we will – I don’t doubt him for one moment but to allow myself to think that she could walk by herself is something I will believe when I see.

Ben couldn’t get into the Sibling playroom today as it was full and boy did he need it, he did manage to help Libby in her therapy but he found it very hard to ‘behave’ today and even the threat that he wouldn’t get a star didn’t manage to stop him – Uncle Karl was driven to beer!

We took Uncle Karl to see the St Louis Arch in the afternoon but the weather was unbearable, they say an index of 115°.

For all you SDR Dad’s that visited ‘Hooters’ - Ben & Uncle Karl had a nice time too!!

For all you that want to see OB Clarks – the photo is above – I personally can’t see what the attraction was!!

Dave sent me a text later today, bragging how he’d got some Brownie points as he’d remembered to record ‘Mistresses’ for me – I reminded him how lost them already as he’d been ‘economical’ with the truth earlier, to which he replied ‘imaginative’! -  Happy 14^th Engagement Dave and thanks for the pressie! xx

Therapy - WOW

Today Libby was back to therapy, I wasn’t expecting much as she still wouldn’t weight bear at breakfast, her feet were still slightly swollen and she had an itchy rash up her neck, so it wasn’t the best start to the day. Anyway, off we went to see ‘Mad Michael’ for our session – I was AMAZED, Libby stood for him, she was kicking a ball, she did ‘High kneeling’ – unsupported, she walked (with help) on her knees and even managed to walk with her Kaye walker (which she was unable to do after the SDR operation), it wasn’t easy for her but she put so much effort into all of it and kept reminding Michael how long she had left of her session! Uncle Karl had come with us and he got very choked when he saw how hard she worked, it was truly amazing and put me right back on track and totally positive and excited again – Yipeeee!! Michael offered to go and speak to someone regarding Libby’s rash and we went with him, what service, there we were standing in a corridor  with Nicole (DR Park’s assistant), Joan (Head of therapy), James (Hospital Coordinator) and then along came Dr Park – wonder what that consultation will cost!!! They decided that we could try an antihistamine but also to stop the medication that Libby was taking for excessive itchy feet.

We had lunch at the hospital (as the food is very good) and then went off to the Botanical Gardens – what a beautiful place. Libby & Ben were really good and we managed to keep them cool by going under the water sprinklers, Karl and I just looked like we’d been under the water sprinklers, the sweat was pouring of us - it was so humid!

We finished off  the day with tea at Applebee’s which was quite funny –Ben sat next to Uncle Karl  (who’s not very used to children) and how I laughed every time Ben wriggled and turned towards Uncle Karl’s pristine white T-shirt with his tomato ketchup hands and Uncle Karl moved further & further away, but Ben just got closer & closer!!

The biggest laugh came as we drove home, there we saw a MacDonald’s within walking distance of our apartment – Dave waited two weeks for a Big Mac and only got one at Chicago airport on the way home!!!!

A Day Off

Libby woke this morning still spotty on her face and an itchy rash on her neck (very much like a heat rash) which I will get checked out tomorrow at therapy. Her legs weren’t as swollen but not back to normal and again she found it hard and painful to try and weight bear.

As we had no therapy today we decided to drive out and visit the Meramec Caves (the secret hideout of Jessie James). The tour was fantastic and Libby & Ben thoroughly enjoyed themselves and the sights were spectacular (the photo’s do not do it justice); we then had a short boat trip on the Meramec River before heading home.

It was so hot, we were all feeling uncomfortable but Libby was especially. When we got back we took the padding off her legs, leaving just the butterfly stitches and she had a lovely shower which made her look and feel a whole lot better.

We finished off the day with a meal at the Cheesecake Factory (very nice again) followed by a huge piece of Cheesecake for Libby – the only one that could fit some in!!

I’m looking forward to getting back to therapy tomorrow, I think it’ll be good for Libby to be encouraged by the professionals and hopefully gain some confidence to try and weight bear and  also for me to be reassured that everything is as it should be and quite normal.

It was strange without Dave & Mum today but Uncle Karl stepped up to the mark and took on the role of tea and toast in the morning! Dave called us and even managed to log into msn so we could see him although not hear him – not quite the idea to pay to talk on the phone and watch him on msn, when msn is free to talk & see!! Anyway, he filled us in on his journey home which sounded quite hilarious, however, his version was slightly different to the version Mum sent me on email, and this is what Mum said:-

Now the story as we have got off the plane in Chicago and are walking to find where we have to go Dave sees the MacDonald's and wants one (just like a kid) I suggested we got our bearings first of which we did, he then goes off & 10mins later he comes back I asked if he got his MacDonald's he said no but he had bought a lager which he was shocked to find it had cost him 9 dollars (so he started with 20 dollars) before that he wanted chewing gum which he got (he did ask if I wanted anything so I had a small packet of crisps) so by now he has not got enough money for his Big Mac and he can't find his credit card or driving licence. He thought he had them with him but then he said perhaps he had left them in his shorts pockets which were packed. Still wanting this Big Mac he goes off again comes back with Big Mac I asked did he have enough money but he had change £5 up to get it. You will be please to know I'm very calm through all of this- not one comment. We board the plane for Heathrow Dave settles down takes his shoe's off and 3 hours into the flight he nudges me and points down to his shoes” look inside my shoe” he said and low and behold in his shoe is his Driving licence and credit card -how can you walk around all that time and not feel something in your shoe!! When I asked him how they got there he said he had put then in there when he had to empty his pockets out on going through the security scanner.

Dave’s version to me was that he couldn’t find his credit card but had managed to get a Big Mac but couldn’t afford a beer and hadn’t had one the whole journey home – Yeah Right, conveniently forgets again – I wonder how many beers he managed back at the Greyhound today – do tell!!!

 

Bye Daddy & Nanny

 

This morning, Libby still wouldn’t weight bear but her feet were no longer swollen. We have no therapy this weekend and to be honest, I think it would be too painful for her. It’s very hard as it feels like we have gone 10 steps backwards but speaking to other SDR families that have had both operations, this is very normal.

We had a quick shop at the Galleria (Ben broke his flip-flops!) and then we had our last lunch at Maggianos with Dave & Mum before I then took them to the airport. We said our goodbyes and felt very sad, neither of them wanted to leave - a couple of tissues later and off I drove back to the apartment.

We decided to spend a couple of hours at the Zoo and had a really nice afternoon, I was dragged into my favourite house- the Reptile House – YUK, it was gross, a huge Boa Constrictor eating a rabbit and snakes galore – the things you do for your children!! We left and Uncle Karl treated them to a Burger King on the way home.

Libby’s feet were swollen again so we elevated them and covered them with some ice. She wasn’t in pain or uncomfortable, in fact she managed some very good weight bearing and also a couple of steps from her wheelchair to the sofa. A small achievement but it felt like progress.

Dave sent me a text to say they had arrived at Chicago and he and Mum were still talking – it was only a one hour flight! I then got another text saying he’d just had a ‘Big-Mac’ and his ‘holiday’ was complete!! I didn’t point out that he still had another 8 hours to go and I would imagine that Mum would have to seriously bite her tongue!!!! Anyway they have now boarded and are on their way back to Heathrow. Feels very strange without them but it’s nice to have Uncle Karl for company.

Uncle Karl Arrives

Today was the day before Daddy & Nanny go home, Daddy was all bright and breezy as we were so late back from shopping last night that he couldn’t be bothered to go to the Irish bar!

We decided to go to the St. Louis Arch & the Mississippi today. Libby was on good form, apart from an ‘ouch’ on every single movement that she made (as and when she remembered!), she was relatively pain free!! She still has a rash (although, no-one seems particularly bothered by it) and I wonder if it’s all the drugs she has had coming out? She also has a slightly swollen left foot which we will keep an eye on. It is obviously very painful for her to stand on her feet and it feels like we are back to square one, she is a dead weight trying to get her around but I am assured this is the norm.

We got to the Arch, which was spectacular and decided to go up it, however, you cannot take a wheelchair. Libby’s little face fell and the tears were about to fall until Daddy offered to carry her and she promised not to ‘ouch’ at every move. It wasn’t the easiest of trips and if you don’t like heights going up 630 feet in a claustrophobia pod, isn’t much fun - Daddy did really well and it wasn’t easy but Libby got to see St. Louis from a high. We then went on to the boat trip on the Mississippi, another 60 odd steps to get Libby down and then onto the boat and of course we want to be upstairs, outside on the top deck! Daddy earn’t some brownie points – finally!! A good day had by all, Ben and Libby spent some of their money on ‘junk’ in the souvenir shop (God, don’t you just hate the rubbish they insist on buying!), Ben was the photographer for the day and Libby said ‘Diva’s don’t smile’!!

We headed home and Daddy set off to buy the BBQ food for tonight and I went to pick Uncle Karl up from the airport, Sat Nav is great but when I was asked to ‘Circle’ the pick-up point, I politely headed off and ended up back on the motorway!! Anyway, that killed some time and by the time I got back to the airport and sussed out the circling Uncle Karl had arrived. I took him back to the apartment to meet a very excited Libby & Ben and then gave him 45 mins to shower and change before we headed off to meet all the other SDR families at the Residence Inn.

We had a lovely evening with all the other families, Dave thought he was gaining some more brownie points by cooking our food (and sinking a few more beers), whilst Libby & Ben had a smashing time with all the other children. It’s so lovely for Libby to spend time with other children going through the same as she is and also for Ben to let off some steam with the other brothers & sisters. A very successful night and we came home around 9pm and put the children straight to bed.

My third child, however, had other ideas, Uncle Karl hadn’t been to the ‘wonderful’ Irish Bar and how could he possibly go to bed on his first night here, jet lagged and desperately  in need of sleep, without paying a visit – so off they went. Oh, how Dave knows how to lose his brownie points - OHHHH Dave, Disappointed again !!!!!!!

Dave & Mum leave tomorrow – what am I going to talk about!!

 

 

Second Surgery

Well you’ll be pleased to know that my husband took me out last night – to the Irish Bar!! I thought I had caught his attention and he was looking lovingly into my eyes but then I realised there were 13 TV screens around the bar and he was actually watching baseball - Oh how it took me back to the days when we first started going out and I was in competition with a fruit machine that wasn’t even being played!!!

Libby went down for her second surgery ‘Humming’!! She didn’t need any clowns - I think she did enough ‘Clowning’ around for everyone!! It’s so nice that she wasn’t worried (or if she was she certainly didn’t show it), very brave. She’s disappointed as she won’t be able to swim whilst we are here and as the temperature is well in the 90’s, it’s a shame but we didn’t come here to swim! When she came round from surgery she said ‘I’m just going to sleep, so that I can go home today’! Dr Dobbs called and said the surgery went really well and he was very pleased, he has lengthened her hamstrings and heel chords on both legs successfully.  Libby has four small pads/plasters on her legs and she was up and walked to the toilet (with a lot of help) within 4 hours of surgery!!  It is recommended that she walks as much as she can bear, quite amazing really - when Libby had her heel chords lengthened in the UK back in 2007 she was in casts for 6 weeks. Sophie popped by to see us, she had her heel chords lengthened early this morning, and she too was doing really well. Hopefully we will be joining Sophie and the other SDR families for a BBQ tomorrow night.

Ben had a nice day with Nanny and got another sneaky swim in – bless him and well done Nanny for braving the pool! We have asked that he doesn’t mention it to Libby as it’s not fair but also it’s not fair if he can’t have some fun too, so we are trying to do it discreetly.

I sent Dave off to the Budweiser factory (just so that I can give him more grief on the blog!!) as how could he go home and not have visited the world’s biggest Brewery!! However, when I sent him a text to say we could leave hospital his reply was ‘great, you get a taxi, I’ll drink heavily and you can then drive me home’, my response was ‘of course’ – Yeah right!! Libby did really well and we were able to go home. FANTASTIC, Nanny & I got to shop (and did Nanny shop – Macy’s was waiting to close!!), Daddy babysat and he was a bit surprised when I sent him a text to say the shops were open until 10pm and we were in no hurry! The Irish bar’s profits were down tonight!

Post Op Day 8

Well Dave had a good night out with the other Dad’s, suffering today and you can imagine the sympathy he got from me & Mum - NOT!!! Anyone would think he was on holiday, didn’t call me to make sure I got home safely from dropping him off!

 Libby had a bit of a rash on her face this morning so I emailed Nicole (Dr Park’s assistant) for some advice, within 10 minutes I had a reply and she said she’d pop and see us in therapy this afternoon (I’d read the side effects of the medication Libby is on for her itching and panicked!). Ben has decided that he will do Libby’s stretches and has made a plan, which he put into action this morning, when he lifted her leg so high our hearts were in our mouths – Bless him!

 We went off to Ted Drewes for a frozen custard/Ice cream and then onto the Science Museum before we had to be at the hospital for therapy. Libby & Ben enjoyed themselves and Libby was definitely herself, she began moaning of a sore back and then mentioned ‘popcorn’ in the next sentence – nothing wrong with her at all except she wanted to eat!

Libby was good today and tried really hard with her exercises; Nicole popped in and wasn’t concerned about her rash so we are just going to keep an eye on her. Joan came to see how we got on with Dr Dobbs and was surprised when I said it was at 3.30pm, James arrived and told us our appointment was actually at 7.30am this morning and surgery is tomorrow – News to us! Anyway, we saw Dr Dobbs and he is going to lengthen her inner hamstrings and heel chords on both legs tomorrow – poor Libby, all she could think about is not being able to swim! So we are in hospital tomorrow at 9.15 for the operation.

Fiona – not got any Steve Madden shoes yet but I did get sunglasses, not enough time for me & Mum to browse leisurely!

Lollyhome – now know who you are – thanks for all your comments Lorraine, glad you liked the scooter!

 

Post Op Day 7

Another good day today, Libby seemed completely back to herself, we even managed a couple of hours shopping this morning and boy can she shop! Dave took Ben for a sneaky swim (as Libby can’t for another week), so he was happy too.

 We had therapy this afternoon and Libby did a bit of walking (with help) and went on the treadmill, she managed 2 minutes and 1 second (so she tells me) and which point she suffered severely itchy feet, something to do with the sensory nerves healing - this can be quite common in older children. The physio paged Nicole (Dr Park’s assistant) and she arrived and prescribed some medication which we picked up within the hour –amazing service.

We moved to our new apartment which is huge and lovely, shame my pub accommodation isn’t like this! We then took Dave to meet the other SDR dad’s for their night out at the Baseball – another night out for Dave!!!! Mum & I took Libby & Ben for a nice meal at TGI Friday’s and now they are all tucked up in bed - Libby with one knee immobilizer on as she couldn’t tolerate two – Bless her, can’t be very comfortable.

Tomorrow with have physio and see Dr Dobbs who’ll decide if she will be having ham strings and heel chords lengthened.

 

Post Op Day 6

Libby had a great night’s sleep, she managed to turn herself and only woke Nanny once – wish I could say the same for Ben, he didn’t want to sleep on the blow up bed so he went in our double, I went on the blow up and Dave was going to sleep with Ben. Dave attempted it (on his return from the Irish Bar!) to get kicked immediately so he decided to go on the sofa bed and I then got in the double with Ben – what a mistake, he can turn 360 degrees in a second, kicks his legs, elbows are everywhere, at one stage I had both his legs across my neck!! Tomorrow we are moving to a 3 bed apartment so all sleeping issues will be resolved!

A very successful morning at the Zoo, Libby was brilliant a bit more like her old self (moaning and niggling with Ben), they thoroughly enjoyed themselves and as you can see Dave & Ben had some bonding time!

 We got back to the apartment about 2pm and Libby promptly fell asleep (maybe we did too much). Therapy at 5pm was good, Libby was still tired but tried as hard as ever, in fact too hard on the bench doing leg presses, and she felt dizzy & sick! I took her to the rest room and said to her that I thought she was trying too hard and she replied ‘yes, but I so want this to work’!

Dave & Ben bonding!

Once she had taken a break she got her second wind and went riding around the hospital on the bike – which she loved.

Dave & Ben Bond!

Thank you to everyone that has helped us on this journey, we wouldn’t be here without you and Libby would not be getting this fantastic opportunity, we can already see the difference and benefits and she’s barely weight bearing yet. It’s going to be 3-4 weeks before she is back to the strength that she was before we came to St. Louis.

Again, thank you all for keep us going with your lovely message, it really helps. ‘Lollyhomes’ – who are you? We are receiving such lovely messages don’t know who you are – Thank You!!

 

Discharge Day

Today Libby has been discharged, we had therapy first thing and once again she worked really hard, lots of bike riding around the beautiful garden. Ben came to therapy and took loads of photos and did some very dodgy videoing as well as acting as ball boy during her basketball session! That whacked her out and she has been quite tired and emotional today – although won’t give up and rest! If she would only take a quick nap (Daddy never seems to have a problem!), I know I’m probably worrying too much but I can see she really needs to recharge her batteries and she still has really droopy eyes (bit like me on a Friday night!).

You’ll be pleased to know Dave managed to watch the Arsenal game at his new found Irish bar but we made him pay and Mum & I grabbed an hour round the pool, Dave then thought we owed him and escaped to do the shopping!

We are off to the Cheesecake Factory for tea and then hopefully a good night’s sleep followed by a lie in! All being well we are going to attempt the Zoo tomorrow as therapy is not until 5pm.