The St Louis Diary
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St Louis Diary
October 23
Saturday October 23rd 2010 Today we set off for St Louis. We flew from Dublin to Atlanta which was a 9hour flight. Emily was a bit of a handful on the flight and by the time we got to Atlanta we were already worn out and still had to go another 2hrs to St Louis. When we finally arrived it was 4.30pm local time and 10.30pm in our tired minds and bodies but we were glad to finally arrive. My uncle Sean met us at the airport which was great because he knew what he was doing and we were fairly disorientated! We couldn't fit all the luggage into the car as well as ourselves so Keith volounteered to go by shuttle bus but ended up at the wrong marriott hotel, so after a worried search for him he finally found us and we settled in for the first night. Kids then woke up at 4.30am as they were still on irish time but hey, at least we had finally arrived. It was all a bit surreal!
October 24
Sunday 24th October Today we spent trying to adjust to the new time zone and met up with two of the SDR families I had been chatting to for months before the big trip. Jason and Sally Power and Tracy and Matt Smith. It was great to finally meet them! Kayley was delighted to make friends with Oliver Smith who had SDR the Tuesday before and they had great fun together chasing eachother round the lobby and comparing wheelchairs! Met up with Deborah and Phil Spencer and their son Mitchell. Mitchell is having his SDR same day as Kayley too. The Facebook SDR group has been a Godsend to have known all these families before flying out. We all share something in common and its great to have support for eachother. That evening we all met in the lounge and had a few drinks together. There was a pretty cool lightning storm over St Louis which was spectacular to watch. Its really warm here especially for this time of year. Tommorrow is our pre op evaluation at the hospital x
October 25
Monday 25th October Well today we met the man himself, Dr Park. We also James and Joan who have been so helpful to all the families travelling internationally for SDR and we met the physio team too. Dr Park said that Kayley was the type of candidate that was perfect for SDR and that her comfort level would hugely improve as would her balance, and he could see her taking some independent steps within a year. She will probably only be able to walk on her own indoors or for short distances without crutches, but wow what an improvement for her. I nearly hugged the man ..as it was I felt a huge overwhelming need to cry, but I just welled up a bit instead. So she is booked in tomorrow for surgery at 2pm so we are getting an early night tonight.. big day tomorrow!
October 26th Op Day
October 26th 2010 The Big Day Dawns So this morning we took a trip to union station and took some pics and got some treats to take our minds off what lay ahead. We arrived at the hospital at 1.15 and once we went into the pre op room it moved fairly quickly and after Kayley got her "goofy" medicine and changed into her gown-jammies. She was so cute then, she got was lying back lifting her legs up and down and we asked her what she was doing and she said "I'm just checking to see are my legs better yet" Ah bless, she thought she thought that that was it lol So we had a private room to wait in and they phoned us on the hour every hour to give us updates. At about 6pm we got to go in in and see her in recovery and she was moved up to PICU She was still sleeping at that point and only woke up for a little bit around 9 to be sick (from the anaesthetic) and she was in some pain so the Fentanyl was turned on as it had been off due to her being so sleepy since the anaesthetic and valium afterwards. So in for a long night I think.. but its worth it . When you see the difference over here in how the hospital is so well run and the doctors are able to talk to you and inform you properly instead of fobbing you off...I learned more about how CP She has been so brave and I am so proud of her and all the other kids that have gone through this they are all little stars!
October 27th
Kayley in PICU post surgery - doing well
Wednesday 27th of October Kayley was quite sick this morning but they gave her some other anti nausea meds and it helped control it, she then slept again on and off. She got very upset from pain around 10am but her nurse Sarah came in and gave her the valium full dose and that sorted her out. Sean and Eileen took Emily away for us today so Keith could stay with Kayley and I could get a little power nap in. I got no sleep last night but thats not abnormal for parents I guess! We saw Dr Park this morning and he was happy with her progress and said he would see us again tomorrow.She had an up and down day, she went through a few hairy pain moments this morning but had a better afternoon, Keith said, and was moved up to 12th floor in patients dept.She is being moved onto either side every 4hrs and the cathether is out which wasn't pleasant for her when she needed to go afterwards and there followed another distressing half hour for her but she got through it and has slept since. Trying to keep her spirits up so if anyone wants to send her a msg or anything while shes in here she is on Floor 12 Rm 17 and you can click here to send one
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October 28th Post Op Day 2 Kayley came off Fentanyl today and was more alert but still quite sick and in a lot of pain. She is now on Tylenol and Codeine for pain and valium for muscle spasm by mouth. Tomorrow morning is first day out of bed! October 29th Friday Post op Day 3 This morning Kelly came to show us how to lift Kayley out bed safely for her and in the afternoon then Michael arrived (dressed as Bob Marley in honour of Halloween, and took us down to the physio suite where he pretty much demonstrated her new legs to us. . wow ... the tight stiffness is pretty much gone. Her stretches come easily. He did some work with Kayley and she was still very weak and sore but it was first day and thats ok :-) The main thing is he is really patient with the kids as well as being really good with them and he tries to make everything FUN! :-D October 30th She had a rough night last night and had some spasm in her legs so she had to have a dose of valium and benadryl (as her legs were also itching/tingling) This is totally normal and I suppose its the fact that these muscles she is now using have been kickstarted and she has never used them before so any exercise is going to cause some adverse affect. . but this will ease after a while as she gets stronger. She had physio this morning with Nicole who did some stretches with her followed by some rolling and sitting up on the bench
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to play with the doll house. We then took her for a 45minute walk around the hospital to get her used to sitting up again in her wheelchair. We visited the Olsen Rooftop Garden on the 8th floor and visited the Playroom. Unfortunately the playroom upset her because she couldn't get out to play and I felt so sorry for her because I think she thought things would just happen overnight but there is quite a lot of work ahead to get her strong.
slide 10
October 31st Well today Kayley had her last in patient physio session. Today it was with Clay and he pushed her really hard but with such enthusiasm and was so on her level Kayley didn't even realise his sneaky tactics. She went from being really weak and sore at the beginning of the session to actually taking steps with her walker by the end. Fantastic progress! She is coming on in leaps and bounds! Discharged from Hospital today and joined our friends back at the Residence Inn. Feels like the week just flew and can't believe the hardest part is over already. Of course, Kayley was supposed to rest when she came back but refused point blank and when I came back from grocery shopping she was walking around the hotel apartment with her walker. Slower, a lot slower than before the op but after such major surgery what an achievement. Amazes me how quick the kids who have SDR bounce back! Monday November 1st Kayley had a physio session with Michael today and she did very well. She had treadmill work she had to do leg presses, and she did some walking and a bit of throw and catch. She had a tummy ache near the end so the session tailed off but she did well and her manoueverability has really improved today. She is doing so well. She is
Page 11
so brave and so strong! She had me in tears this evening because she told me "mom my legs are really working! The magic worked!" Such a simple thing we all take for granted but she can now bend her knees when she tries to, she doesn't lock up - although the 6years of habit have built up and she has to retrain her body but its a fresh canvass to retrain now. Amazing. x
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Thursday November 11th 2010 Apologies for not having updated in a while We have been trying to enjoy our time here as well as physio every day! Physio has started to become a bit of a problem for Kayley, as she tends to want to give up as soon as it gets a bit hard. Then she is likely to get upset and then nothing gets done. Its hard to explain to a 6yr old that the "magic" doesn't happen straight away and there is a lot of physio ahead to get her strong enough on her "new" legs to be able to use them. Apart from that we are enjoying our time in St Louis and we will be sad to see some of our new friends leave this weekend as their time in St Louis is up. Kayley and Emily have made new friends too. We will really miss the Smiths and the Powers when they return to the UK. I know Kayley is going to really miss Oliver and Keira - I can foresee flights to the UK to see them all in the future!
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