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.

Post Op Day 4

Well physio this afternoon wasn’t so great, Libby was so exhausted that she was completely out of it again, she managed to stay awake and still tried, Clay was impressed with what she had managed on her first day, she even rode the bike. As she regains her strength she’ll get better & better!

Libby & Ben had a delivery of cookies (very expensive cookies I might add) were they interested – NO!! Maybe Nanny & I will eat them tonight, don’t suppose they’ll notice!

We had a video call with Grandad & Aunty Terry and Nanny Lee and Chloe telephoned so Libby was very happy. She was also talking to Miss Booker and Auntie Lisa on Face book and MSN; it’s so nice to be able to be in touch with everyone, the time flies when we are glued to the computer!! Thank you all for your lovely messages they are really keeping us going.

Dave’s had a nice day round the pool, he didn’t manage to stay too long as he couldn’t keep his stomach in when the dolly birds sat themselves next to him – he’s now going to rejoin the gym (yawn yawn) when he gets back!

Nanny, Ben & I are off home now, Daddy staying tonight and we are being discharged in the morning.

OMG

OMG what a therapy session this morning! Libby couldn’t stand up this morning and transferring her to her wheelchair was really hard as she was barely weight baring and heavily relying on me, she was given her pain control medication half an hour before therapy. We met Clay and Tracy on the 4^th floor and they started taking Libby through her stretches, she was in fits of giggles and spaced out again (not as bad as yesterday) but my god did she work hard, I don’t know why I expected anything else of Libby as she always works hard at her exercises but seeing as she was so weak and in pain I just wasn’t expecting what I saw. What a STAR, Clay said he didn’t see a whole lot of patients on the first full day of therapy doing as well as Libby!! He had her doing loads and ended on help walking (supported) to us – you should have seen her grinning face, she was so pleased and excited with the way her feet and legs were working, it reduced me to tears (not hard these days) – Clay said it was an AWESOME first session! I can’t wait for this afternoon’s session, WOW WOW WOW!!!

Post Op - Day 3

Well, ‘Mad Michael’ came and Libby had been given her pain relief about 30 minutes before his arrival, she complained about being transferred into the wheelchair and you could see she was holding back the tears. We went off to the physio room on floor 4 where Michael showed Libby how to help getting to the sitting position and in and out of the chair, the medication had kicked in and she was so spaced out, she didn’t have a clue what was going on. He then moved on to show us how to do the new stretches at which point Libby was out for the count! We carried on regardless and it was wonderful to feel her legs and feet; they were all floppy and there was no stiffness at all, instead of breaking out into a sweat as I normally did, trying to get her leg as stretched as I could, I can now do gentle movements with these lovely legs that are not resisting me. It will take the next 3-4 weeks to get Libby back to the strength that she was prior to the operation but with all the therapy we now have available to us and Libby’s determination, I feel really excited about her future.

It was supposed to be Nanny’s turn to stay the night but after seeing the way Libby needs to be lifted into her chair and toilet etc... It was decided that I was the best person to stay. I popped back to the apartment with Nanny & Ben for a rest and some tea but Ben then decided to pull on the heart strings and cried and cried begging me to stay with him - talk about feeling guilty! I was trying to explain that I realised that he wanted me to stay and as much as I wanted to stay with him, Libby needed me to, how do you explain that to a seven year old and not make them feel that you’re favouring one? Anyway, he settled down and I promised to ring when I got to hospital – I did and was he bothered – NO!

And Dave gets another night out at the Irish Bar.........................

Post Op Day 2 - 3

Libby had a good day yesterday and got better and better throughout the day; she was sick in the morning but settled down and then managed to eat some jello (jelly to us) which she kept down. She began to be more like herself and was joking about. We had a visit from Callum (he had his SDR op the previous Tuesday and his ham strings this Tuesday), he gave Libby a get well balloon and she was really pleased to see him. Libby showed us how loose her left arm is and it’s quite amazing, considering we were only expecting her legs to change after the operation, it’s fantastic to see this arm that she can now put straight up in the air without any stiffness – AMAZING! Daddy stayed the night -poor Libby having to listen to his snoring and lucky me for another good night’s sleep!!

This morning we arrived and Daddy didn’t get much sleep, Libby wanted to be ‘rolled’ every 10 minutes for comfort (or just to keep him busy knowing Libby)! We have been shown how to get Libby out of bed, it’s very scary as we are so frightened not to hurt or damage her. It was my turn to lift her out of bed and she was obviously in lots of pain, Nanny nearly passed out just watching and I just about controlled my tears! She was very weak and was nodding like a dog! We managed a half an hour trip to the garden on the 8^th floor which is absolutely beautiful and then we popped down to the sibling playroom to say hello to Ben – as we left I heard him proudly saying ‘that’s my sister, she just having her physio’! Every day, Ben has bought her a present or a card; he fed her some ice cream this morning and even kissed her! As we came back to the room, we bumped into 3 year old Gracie who also had the operation the same day as Libby; she too was nodding like a dog! I got Libby back into bed and she’s now comfortable again.

We have our next physio this afternoon at 2pm with ‘Mad Michael’; hopefully Libby will be more comfortable this time. It’s all exactly as we have been told, so although it’s tough seeing Libby in pain, we know it’s all for the right reasons and things will now start improving by the hour.

BAD HAIR DAY!!!