Chrissys Quest

Hi everyone, sorry it's been a while. We have been busy getting back into a routine with Chrissy and his physio. However I'm glad to say that he is making great progress. 
So where do I start?  His walking is getting better and better all the time. He even managed to walk to school for the first time ever just before the Easter holidays (about 1Km).
He has recently progressed from wearing the long splints to just small ankle ones. We have to now strengthen his ankles so that we will be able to stop wearing the splints altogether. There are new progress videos on our Facebook page (Chrissy's Quest)

We had our first proper physio session at Harrogate hospital today. It was a very emotional day catching up with everyone. Chrissy even managed to make one of the therapist cry when we showd off his walking.
He was also measured up for a wheelchair this morning as he is starting to feel a little awkward about being in his pushchair when he has to go anywhere.

Another good day today, while we were practing sit to stands again we manage to take it one step further. i gave Chrissy the choice of either standing for 20 seconds at a time or walking 5 steps and standing for 10 seconds. He choose the second option.

Slowly getting used to being home. Boys had a good sleep in this morning. They were very tired little men.
Practiced our "sit to stands" with Chrissy this evening. After a few I asked him if he could hold the stand. He had a couple of attempts and the last one he held for nearly a minute. we are finally making progress

Home time, or at least it should have been. we left the hotel at 12.30pm and were due to fly to Chicago at 4pm and catch the connecting flight to Manchest er at 6pm. Unfortunately the first flight was delayed due to snow in Chicago. in the end in was so delayed that we missed our connection and the only other flight back to the UK was to Heathrow at 9.30.
However when we finally got to Chiago this flight was also delayed, firstly due to a problem with the luggage loaders breaking down and not being able to  be moved out of the way for over an hour. Then when we were finally taxing out to the runway the captain found a fault in the first engine. We didn't leave Chiago until gone midnight.

Today was our last full day here in St Louis. It's a strange feeling, excited about going home but also going to miss having access to the physio 5 days a week.
Didn't do much in therapy today it was mainly checking Chrissy range of movement and completing the post op film for Dr Parks evaluation.
As a treat for our last day the totally brilliant hotel manager had managed to arrange some free tickets for us to take the boys to see Disney's Phineas & Ferb's live show. They had so much fun, their little faces lit up when we got there.

Chrissy is doing really well today, manage to knock out 20 "sit to stands" in the hotel room before we went to physio. The physio session started really well as Chrissy gor to ride a bike up and down the hall ways of the hospital, however as soon as he was asked to stand and do some assisted walking then the tears started. he thinks he can't do the things he used to be able to do.
As treat we took the boys ice skating this afternoon, as Chrissy was unable to stand we were able to take him on the rink in his pushchair. David did really well aswel he onlt fell over 3 times.

We had our post op review with Dr Park today. It went really well. We explained that we were concerned about Chrissy not wanting to weight bare but he advised that this was nornaml and the pain he is feeling could last for upto 10 days. Other than that he was very please with the progress made so far.

Today Chrissy allowed me to put his splints on for the first time since his lengthening surgery, and also tolerated wearing them for a few hours.
Just before we went out for tea we got a visit from the St Louis Fire Service. The kids really loved it and even got to sit in the drivers seat and homk the horn.

Physio was really hard for Chrissy today. His legs are really hurting him and he is not willing to put any weight through them. However thanks to the patience of the Mad Mike (therapist) and Marty by the end of the hour session Chrissy had managed to a "sit to stand" with a 2 min assisted stand

We had an early start this morning as today was the day for Chrissy's second surgery to lengthen his hamstrings and heels cords. Everythings went according to plan and was back in recovery an hour and 20 mins after he went into surgery. Dr Dobbs (the surgeon) called us after the surgery to advise on how it had gone and that they had achieved some good corrections and that we should see massive differences in Chrissy's walking ability.
As this was not as invasive as the SDR Chrissy was allowed back to the hotel the same day.
We finished the day off with a birthday party back at the hotel for one of the other children who is having the SDR surgery.

We had a great therpay session this afternoon thanks to our new friend Marty. He asked if he could come along to see Chrissy at work, which was fantastic as it really made Chrissy work extra hard to impress him. He had a race with him on the treadmills and Chrissy managed to reach a speed of 2.0 MPH for 8 mins, a personal best for him.

Oh no Chrissy has lost his smiley monkey. He wasn't in bed waiting for him at bedtime last nigh. He so upset. Not sure how he will react to this when it's time for surgery on Thursday. i have made "Missing" Poster to put up in the hotel. I hope we get it back.

Chrissy has been working really hard during his therapy session and is now back to walking independantly.
We saw the Orthopeadic surgeon on Wednesday to discuss the issue of tendon lengthening. He took one look at Chrissy and could tell us straight away what needed doing. Chrissy is now booked in for surgery on 2nd Feb.
Today we took a trip out to the St Louis Gateway Arch. It is over 630ft high, it was a little scarey going up but the views from the top are amazing. We then took a walk down to the Mississippi River and Chrissy walked down all the steps and then back up again when we had finished.

Long time no Blog here, sorry, been updating facebook (look up Chrissysquest on Facebook)
Chrissy was discharged on Tuesday and has been attending physio every day since. We were a bit worried at first becuse he lost the mobility he had, he was finding it hard to crawl on Monday and Tuesday let alone walk. We were expecting this butit was still hard and made us worry about what we had done to the poor lad.
As each day has gone by he has got a little stronger and his mobility has improved. He has taken his first independednt steps today post surgery and that's been a huge relief.
We can see the improvements he has made over the past few days and are very excited about where he is going to be by the time we head home.
Check out our other updates and videos at http://www.facebook.com/video/video.php?v=213589308730729#!/profile.php?id=100002389855102

Saturday night was very tough, lots of pain and discomfort with very little sleep, but he was very brave and by the morning was feeling a lot better.
Physio was tough, but saying that he fell asleep during the stretching, must have been the exhausting night before.
He was still in some pain during phsyio so not surprisingly was reluctant to do much of the work, how much is actual pain and how much is being scared because of the pain he has been in, time will tell.
As the day wore on he became more comfortable and started eating well again, there is a pizza hut in the hospital and he likes cheese pizza.
Both IV lines have now been removed so he is happier there. Onwards and upwards on Monday, 2 more PT sessions booked.

Another mixed day today, Chrissy came off one of his pain meds and that was really hard, but the Valium is still doing it's job.
Had one of the IV needles taken out today so that's made him a bit happier.
Managed a small bar of chocolate, hoping that his appetite will return now the drugs have been reduced.
In bed all day again, looking forward to tomorrow when he can get out and has his first physio session.
Still being good as gold, showing us just how brave he can be.
More tomorrow after the first physio session.........

Chrissy had his big day yesterday, he was incredibly brave and was raring to go, the surgeons took him in at 12 Noon and 3 hours later Dr Park came to tell us that the surgery had gone well.

Chrissy was moved to recovery where he was brought out of the anasthetic, he was in quite a lot of pain but the fantastic physicians worked hard to find the right level of drugs to keep him comfortable.

He was soon moved Paediatric Intensive Care where he spent the night. He did very well and managed to rest between being woken up to administer more Valium, the world has evidently run out of IV valium so it has to be delivered orally. Chrissy was up to the task and preferred to administer his own medication via the plastic syringe..

He has had a mixed day today, the drugs have kept him pretty well sedated but the times when he has been awake have been pretty tough on him.

The pain and discomfort should subside naturally by Sunday when his drugs will be reduced and he will receive his first physio session, this is the time we will get a better idea of the changes the surgery has started to make.

Everything so far has gone well and according to plan onwards and upwards for Chrissy.

Thanks to everyone who helped to make this possible XX

PS - Chrissy has been so brave his Dad has promised to take him to Hooters for tea when he gets out, watch out for the pictures from that visit!!