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!!!

 

Second Night

I had to post this, of all the dogs to come & see Libby; she got a Bernese – made my day even though she was to out of it to really care! Libby wanted me to stay last night as she said Daddy had stayed the night before, I didn’t protest but did point out that I was also there (just left out the fact that I was having a fantastic sleep in the family room!). Mum & Ben left swiftly so that they didn’t have to endure Dave’s driving, I think he was a little offended until I pointed out that I wouldn’t get in the car with him either!! Dave went off quite happily and then continued to text me throughout the evening to tell me about a brilliant Irish bar that he’d found – nothing changes!

 Not a great night’s sleep, amongst other things, one of the monitors kept going off saying she wasn’t breathing! – although this is a fantastic hospital it baffled me that the nurses had no link from the nurse’s station to the monitors and as they kept shutting our door they couldn’t hear a thing and didn’t know so I had to keep getting up and telling them – it only went on for 4 hours, every five or 1o minutes!!! Libby’s nurse for today has just arrived and said if we need anything just press the call button – why wasn’t I told that last night?!?!

Today Libby’s temperature is back to normal and she should be taken off her drips and monitors and hopefully she’ll be awake for a lot more today and things will get better. Libby has just opened a few more cards and presents and I had to get Dave to read the beautiful prayer from her class 4PW as I was too choked – thank you!  It hasn’t been too bad and as Libby is not a complainer we have been fairly lucky – she’s amazing.

Post Op - Day 1

A fairly quiet day today, Libby has been kept sedated for most of the day, she was sick a few times and now has a bit of a temperature but we have been moved from ICU and they are now reducing her medication. She hasn’t complained at all about being in pain and when she is awake she is in good spirits, this morning she said ‘Good Moring Good Legs’ and if anyone asks her how’s she is feeling they get the ‘thumbs up’ from her! She hasn’t much energy but was able to open a few cards and pressies – she didn’t forget she had them!! I’ve kept some back for tomorrow as she should be far more alert. Ben came in to see her today and gave her a new purple teddy (just what we needed!) and a lovely drawing that he did last night, he was very pleased to see her and immediately asked if he could use the computer and go on Club Penguin, when he couldn’t get connected he went to the Sibling Playroom! He’s been a really good boy, it must be very difficult for him to see her like that and also she is getting a lot of attention, he’s been a star and obviously cares very much – but it’s not cool to show it !! Libby was fast asleep when Faith the dog came to see her but hopefully she’ll be coming back tonight so Libby can have a cuddle.

First Night

Well we are now into the next day, Libby has been OK, she was sick twice in the night but coped quite well (she absolutely hates being sick) although the 12 teddies that she insisted on bringing didn’t! She was talking to us and co-operating with the nurses, she even remembered to say ‘please’ when asked if she’s like an ice chip (ice cube to us) with her medicine – bless her! About 8pm last night she asked in a slurred voice if she could open her cards and presents and said she was ‘up to it’, she then promptly fell back to sleep!

Dave & I were going to take it in shifts to sit with Libby and around 10pm last night I went and got him from the family room (with sofa beds & blankets) and we swapped – I then slept for 6 hours (not much sharing from me!!) – Dave popped in to see me a couple of times and said he would have taken a photo and put it on the blog, if he knew how – result for me!! Now he thinks he has got loads of brownie points but also realises he will lose them in a flash!

This morning she is talking well, wants to sit up (which she can’t) and is dictating messages to me to type on her MSN, between nodding off. She is thinking of her tummy and keeps asking for food so getting back to her old self! She is also asking to be rolled, which is good as some children don’t want to be moved and they need to be rolled every few hours. The doctor has been in and Libby gave him the thumbs up when he asked her how she was feeling! We have seen the incision on her back and it’s very neat.

We are so proud of our brave little girl; she’s just getting on with it and not complaining, even managed a smile this morning. I was just telling her how upset Ben got when he left the hospital last night (he didn’t cry in front of her but sobbed when he left the room) and she said ‘so he does care’!! He went home and Nanny said didn’t stop colouring and making get well cards! I bet when he comes to see her today, he’ll say hello and then ask to go to the sibling playroom!!

PICU

Well, Libby is now in PICU, where she will remain for the next 24 hours to be monitored. The elation we felt when Dr Park told us the operation was successful soon disappeared when we actually saw Libby in recovery, she looked so awful. Although it’s to be expected, it’s tough when you actually see them looking so helpless and being in pain, it makes you feel guilty because we put her through this and you just want to take the pain away. However, it’ll all be worth it in the end, the hospital is fantastic and she is receiving the best care, she is quite heavily sedated and sleeping peacefully at the moment. It’ll be a long night but hopefully she’ll feel a bit better in the morning. Poor Ben was very upset when he saw her and really cried when he left with Nanny to go back to the apartment. We had been warned by the other SDR parents that the first 48 hours are rough so we are as prepared as we can be. I haven’t attached a photo this time as Libby doesn’t look great and thought it a bit unfair, hopefully we can post a nice smiley tomorrow! Again, thank you all so much for your lovely messages. xxx

Surgery is over....

Dr Park has just been to see us, Libby’s surgery has gone really well and the SPASTICITY has GONE!!!!!! Libby is in recovery and we are waiting to see her. In the meantime, I thought you’d like to see Dave in recovery!!

The Day has come.....

All up early this morning although we didn’t need to be at hospital until 10a.m. We were all feeling quite calm, even Libby, she was a little nervous last night but not too bad at all today, quite amazing really considering what she is going through. We arrived at the hospital and received superb care; everyone was friendly, helpful and couldn’t be more accommodating. Various people were in and out of the room and everything was explained to Libby to ensure she was as calm and relaxed as possible, every time someone left the room Libby would say ‘they were nice’! Libby choose bubblegum flavoured gas to put her to sleep and just before she was due to go, they gave her a medicine to help relax her, after 15 minutes this should have kicked in – I was expecting Libby to become quite drowsy and not really be aware of what was going on but instead she kept laughing and lifting her head on the pillow and slurring at us – it was very funny!

 

The time came to say goodbye and we had to leave her before she was put to sleep (I’ve always been there when she’s been given the gas) but she was in good hands. Obviously Nanny & I were in floods and Dave was pretending to be all macho -  but I saw him! We are now sitting in a family room awaiting news, we have had the first call to say she has gone to sleep and they have made the incision. Next call is in about an hour.

 

Ben went off to the sibling’s playroom which is supervised and he is now making some American friends he had some lunch with us but has now gone back for a long time (he said)!

 

Can’t believe we are finally here and it’s actually happening.

 

I’ll post again after surgery is finished. Thank you all for your support and lovely messages, it’s really nice to know you are thinking of us and especially for Libby.

 

Toni

xx

Libby meets Dr Park

Yesterday we got familiar with our surroundings; we went for breakfast at the Cheesecake Factory and didn’t need to eat again for the rest of the day! Dave was very disappointed that alcohol was not served at 10a.m.! We then took a drive to the hospital to make sure we knew where we were going; however, the Sat Nav and I didn’t really get on nor did me a great big car and huge roads and we were none the wiser this morning! Libby and Ben had a nice swim in the afternoon and then early evening we took a taxi to see the other SDR families staying at the Residence Inn. Can you imagine Dave’s face when we arrived only to be told the bar doesn’t open on a Sunday – HOW FUNNY!!!! Anyway, we had a lovely evening and it was really nice for Libby to meet the other children who had had the operation and those that were going to have it.

 

Today we have been at the hospital and have finally met all the people that we had been emailing for so long. How efficient they all were, everyone was really friendly and kind, we were not kept waiting, in fact we were slotted in for an X-ray at 11.15 a.m. so that we didn’t have to wait till 1pm, it really puts us to shame how our NHS works. The day ran very smoothly and we met Dr Park, who told Libby that she would walk independently at home and school and for long distances she’d need a stick. It will also help her left arm, which was an unexpected pleasant surprise. Obviously, we are over the moon that we have finally been told face to face that this operation will really benefit Libby.

 

Only tomorrow to get through now, before all the hard work starts for Libby to reap the benefits of this surgery. We are scheduled to be in hospital at 10 am tomorrow and surgery will be 12.30 pm....Poor Libby ‘she says’!!

Well, we have finally arrived in St. Louis, flight was great until we got to Chicago and they cancelled our connecting flight, then put me, Libby & Ben on a flight and Dave & Mum on another! Anyway, eventually after a few tears it worked out and we got here. Apartment is great and Libby & Ben have fell into bed, they have both been so good today and we are all exhausted.We have a free day tomorrow to get our barings and then to hospital on Monday to meet everyone ready for Tuesday. Toni xx

This gives us hope and encouragement - A comment from Callum's Dad - Callum had the SDR operation last Tuesday, he is 7 ....
...
to all those parents that are on the sdr page and waiting for your childs operation i would like to share what callum told me in hospital last night. Daddy this is the best thing that could ever happen to me in my life.dont know how ...i kept the tears from flowing but if this isnt enough insparation for u all i dont know... what is. Anyway good luck to all those familys who are waiting or whose done this journey already good luck to all your children they are all so special xx

And it works!! 10 days to go now, we are all excited, Libby especially. We have been in touch with other families out there and it's all so positive. Little Callum (7yrs) had his op yesterday and I'm speaking on Facebook to his Mum every day. We will see them when we get there.Libby had her sports day today and insisted on doing the 'Long Distance' I was worried she may damage her legs just before we go but all safe and sound!!

St Louis here we come

20 days to go, Libby is very excited and I am getting nervous, it seems unreal that this is actually going to happen. It has really helped following everybody else who has been, are there or going.

Will post again soon, just testing really that this is going to work!
Toni x