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Check back in October to follow Oliver's progress in America
Thurs 7th Oct:
I will be doing a diary of Oliver's journey before SDR and after to help others in the same position that we have been in for the last 10 months along with all Oliver's family and our friends.
First of all we can't thank you all enough for those that have helped and supported us in anyway to get us to this point, we will be flying out early next Sat 16th this we could not have done without all the wonderful people that helped. Surgery is the 19th Oct and we will keep his facebook page and this diary updated as much as possible.
We raised the £40,000 needed and any money over that will go towards Olivers physio back in the UK and his return trip to St Louis next year for his check up.
This journey as a family has not been easy so I won't say otherwise, although it could have also been a lot harder without the help we have received, not only family and friends but people that have never met us or Oliver. This has touched us the most, words can't explain how that makes us feel but thank you. We are hoping that as you watch Oliver progress you will see exactly why we made the decision in going for this, it's not only about Olivers life now but the big picture this will prevent multiple surgeries, pain and discomfort he would have felt as he grows older.
Oliver himself is now looking forward to his operation and being the bright boy that he is seems to understand alot although he has a long road ahead of him we are confident he will achieve all the expectations Dr Park has for him and we will always be so, so proud of him.
Sat 16th Oct
Well after 10 months of planning we are finally in St Louis, it has still not sunk in for any of us even after saying goodbye to family, friends and our other 2 children last night, the journey has been long and exhausting to say the least.
Tonight we met up with some other families from the UK that have already been through the SDR and out the other side, they all seem happy with their children's progress so far which is reassuring, they made us feel very welcome so thankyou.
Tommorow we will be relaxing and then going to the cheesecake factory with the other families.
Oliver will finally meet Dr Park Monday Morning where we will no doubt learn more as to what the expectations will be we are both nervous and excited about this. This will also be the day its most likely to hit home but happy we finally here. Once again thanks to everyone that helped get us here.
  
Tues 19th Oct: Surgery day
Well the day is finally here and still not sunk in although nerves kicking in a little now. We finally met Dr Park yesterday, he is a man that just seems to have a calming effect on you he said that Oliver will def benefit from this surgery post op he will no longer require splints, he will play all sports normally, comfort will improve, no further orthopaedic surgery, no physio after 1 yr, his walk will be near normal, so much so he is doubtful people will even notice his CP we are very pleased with that. Oliver is considered mild, however for others considering this journey we stated our concerns about this and Dr Park's response was any limitation is a disability. He also said without surgery Oliver would always walk, however once in his 40s he will more likely have pain and discomfort, loss of stamina and speed this is why the time is right to do something now.
  
Last night we had a lovely evening out with the other families we also properly met the Power's and the Page's currently there are 6 families here from UK and another few families coming out in next week so we are not alone.
Surgery is scheduled for 6pm (English time) which is midday here, we have a gentleman from NHS observing the operation so there is hope for families in the future. I Will update as soon as possible on how it has gone.
Post surgery
Well what a rollercoaster day, it's been the hardest day of our lives nothing can prepare you really I thought would be fine and was until Oliver got a little panicky just before going down. We love him so much and he just looked so small and vulnerable, many times felt like running and grabbing him but know that's really not an option if he is to have a better quality of life.
Oliver came back at 4.20 pm so that was exactly 4 hours he was away from us, we were updated every hour so the time didn't go as slow as I anticipated. The staff here are all wonderful and can't do enough for you or your child. The surgery itself went well and 60% of sensory nerves were cut. Oliver suprised us at being awake for nearly an hour post surgery he was a little tearful the first person he asked about was Dr Park quote "I didn't see Dr Park" we said "well you were asleep" he said "but I wanted to say thank you as my legs dont feel stiff anymore" well of course this set us off, what an amazing little boy. I asked even though hurts is he happy he replied yes, we really can't ask for more.
Oliver is now fast asleep, quite a deep one as can't be woken but this is probably due to alot of factors jet lag, stress and drugs so not worried, was a bit worried earlier as he would not move left leg but has done this a bit since so fingers crossed ok.
All being well we will move to a ward tommorow and out of intensive care. Oliver you are brilliant we are so proud of you and really pray all your dreams come true. Love Mum and Dad xxxx
  
Day 1
Oliver was in and out of sleep last night, a better night than I expected it to be. The nurses here are reallly nice and quick to attend to his needs especially if he in pain,Oliver is very good at rating his pain from 1 to 10 and so far not got above 5.
Oliver has been awake a lot more than we expected post op he even skyped most of the family, watched a little tv but above all else he is moaning a lot that he is bored (now that is the Oliver I know) by mid morning he was complaining a fair bit about bordom and wanted his tubes took off especially the ones into his hand as he couldn't play his psp properly, for those close to Oliver you can imagine the moaning haha.
Dr Park came floating in a bit later which cheered him up, the first thing Oliver said was thank you for fixing my legs this was lovely to hear. Dr Park is very pleased with Oliver so far and said in his own words "his walking will be better for sure".
Late afternoon Matt phoned his nan to wish her a happy 90th birthday, Oliver went off to sleep at this time so didn't get chance to talk, 4pm we were moved to a ward, Oliver started moaning about a headache he then went off to sleep.
Oliver didn't wake at all for hours which I did think was a little strange after the day he had, when the the nurses turned him he was sick everywhere and complained his head hurt him a ten, later he developed a fever and slightly low blood pressure. We were quite worried as he had been fine for first 24 hours, these were complications we expected but not so much later. A neurosurgeon was called, they were not overly concerned due to a number of factors jet lag, the operation, the amount of time he was awake in the day so decided to just wait it out.
This morning Oliver said his head now a 3 in pain (thank god) overall he says feels better, he is sleeping a lot but that is what he really should be doing according to the nurses so yesterday he probably over exerted himself.
Last night was the toughest so far post op and for the first time I doubted the decision we made, although when you see your child upset and in pain thats to be expected. Fingers crossed he gets better as day goes on today.
Love you little man and our children at home who have been through alot this year proud of you all, mum and dad xx
DAY 2
Oliver slept most of the morning of and on the most he was awake was 5-10 min explained my concerns to the nurses, they said Oliver will feel much better once they turn off the fentonyl (a drug stronger than morphene) as this usually makes them feel bad which was happening at mid-day.
Late afternoon Oliver was so much better I noticed his speech was clearer and he was alot more happier within himself, he watched a little tv, ordered himself a grilled cheese (cheese toastie to us) and managed to eat a lot of it.
Oliver was awake and more himself for afternoon although still moaning about the IV into his hand, we are hoping they take it out soon so he stops moaning all he wants to do is play his psp.
The orthotist came round to measure Oliver's feet as he will be having something in his shoes for a while called pollywoggles, we are so happy that he no longer requires his splint as that was one of the things Oliver most wanted to achieve. He may have to wear his splint at night because although the spasticity is gone, his heel cord is a little tight, Dr Park told us this when he was evaluated but felt Oliver didn't need surgery for this, stretching will be enough. Once Oliver is walking heel to toe he will no longer require anything.
His dad went back to the hotel last night, if honest was a little scared at the prospect of a night with Oliver's moaning as he had 20 hours sleep since yesterday and medication had been reduced but we needed his presents, clothes and wheelchair ready for pysio sesssions the next day. I am both nervous and excited about this, really want to see what Oliver's ranges are now, I can feel his legs are looser already. We have alot of work to do or so it seems at the moment, we do not regret our decision one bit as rather than maintaining what Oliver has we can now improve on it. We know Oliver will achieve all the expectations Dr Park has of him.
Day 3
We started the day off this morning feeling really positive. Oliver had a great night with hardly any pain. He was a joy to be with as in a lovely mood. Oliver started the day with breakfast he had a whole bowl of cereal, i was really happy to see him eating properly again. 8 o clock things changed Oliver started to get pain, unfortunately the nurse on duty decided turning him would be enough she done this half a dozen times before I ended up telling her no he needs pain relief, unfortunately it takes half hr to work by which time Oliver was in so much pain he was begging me to make it stop and throwing himself around the bed, not a good start to the day in the end.
Once his dad turned up another hour later we settled him, his dad gave him some presents from home he loved them so thank you everyone, although we still had the constant moan about his IV arghh.
At 9am Beth the physio came round to show us how to get Oliver in and out of bed, we then walked up to the roof garden and playroom, was nice to finally get Oliver out of bed. We were told only an hour as Oliver will tire easily.
Once we got back Dr Park came round, he said happy with Oliver and was time to take the IV out, well we all cheered.
Physio at 1pm with Michael and what a character he is, even though Oliver was not the best this didn't phase Michael, in the end he had Oliver giggling even if he didnt want to. Today he went through Oliver's ranges and stretch work to do on Oliver after 4 years we found out why Oliver walks with a swagger, there is a stretch we could have been doing although NHS never shown us( what a suprise). Oliver then had to try and crawl, he needed alot of support to do this as he is so weak due to the surgery and loss of spasticity. Oliver needs to do alot of strenthening work as his body feels very strange to him now and we aware he will get frustrated at times as he adjusts to do things differently, we also need to work on his heel cord on the left leg as this is still tight.
Once we came back to the room yes Oliver finally got to play psp, and have some lunch. Then a nice afternoon nap.
Once he woke he spoke to some family on skype and then we took him for another ride in his wheelchair to the roof garden and to see his SDR twin Keira (had the op the same day as Oliver) who has named her bear she was given by the hospital Oliver (how sweet is that). We now all settling down for the evening watching a bit of tv and resting.
  
 
Day 4
Up early this morning back to the hospital for 8am ready for physio after a night back at the hotel, Oliver had little pain according to his dad so we really seem to be on the mend now.
Today we went through some stretches, then it was time for more fun. (Oliver told his brother on skype that physio really good here). Oliver is doing amazing and improving all the time, he did lots of walking, he was asked to walk heel to toe which he has never been able to do this is part of re-conditiong his brain to walk as he should at one point he forgot himself and done a few steps on his own he even suprised himself. Oliver is still very unstable although we can see the potential to do well already.
We relaxed for most of the day, Oliver wanted to see Keira and wants to see her all the time, I think he feels a bond with her having the same surgery day, so took the kids to the roof garden to enjoy some sun and dip their feet in the water feature. In the evening Oliver and his dad decided to listen to some Pearl Jam.
We get discharged tommorow, cant believe how quick it's gone. We have no regrets what so ever.
  
Discharge day
Wow! Discharge day, cant believe we're finally going back to the hotel. Oliver had a 90 min physio session first thing, he done lots more walking today with hardly any help the change in him daily is unbelievable.
Once we were discharged we decided had to go out for some supplies, 3 familes and 2 wheelchairs were fun trying to get onto the bus but we managed it. We were joined by the Dunne's whose daughter Kayley has the operation next week and the Powers.
Went to the bar in the evening for some drinks with the other families, John from the NHS and BBC, its so nice to be with others that have gone through this or yet to have it. Oliver is making lots of friends, which is so nice to see. The BBC are here filming a family from the UK at the moment, Oliver was filmed walking holding onto Matt's hand and interviewed on how he feels, I was asked a few words which shocked me as hadn't chance to do my hair or make up.
Stayed up a bit too late with physio in the morning but so nice to unwind after the months we have had. Oliver continues to amaze us, my only concern is the fact we have not had confirmation as to whether he will need heel cord surgery although his feet are flat now so hoping we can stretch this through physio. The spasticity is gone but his heel cord is shortened, this is very common with toe walkers such as Oliver its a problem caused by the tightness he had.
We are over the moon at how far Oliver has come in such a short time, way to go Oliver xxx
  
Mon 25th Oct
Woke up at 6am wishing had not drunk so much the night before but was nice after the year we have had to finally relax a little, Got to physio for 8 to be told 2 hours early ooops (oh well shows we were keen) Oliver did some treadmill work today, really trying to get that heel to toe movement this may take many months as all a new way for Oliver to walk.
I mentioned to Michael my concerns about heel cord surgery, he measured Oliver and is optimistic we can achieve the range required through physio and stretching, Oliver currently is at 8 degress passive and 15 active, i believe they want 10 to 15 degress passive to achieve normal gait.
We got back to the hotel lunchtime and all had a nap, in the evening we took a stroll to union station to have dinner in the hard rock cafe.
Had a drink in the bar with the Spencer's who have the surgery tommorow with their son Mitchell, we can't believe a week on and we are on the other side re-assuring other families that are going through it. Oliver is now taking independent steps, I forgot at one point he is still unsteady and let him to room on his own with Mitchell.
We are really pleased with Olivers progress and quite suprised that he already at his pre-op state, we have many months of therapy to strenghen and straighten them legs up, knowing Oliver he will cut that down by half being the determined boy he is.
Tues 26th Oct
Physio in the morning with Beth today, she phoned up to Dr Park about Oliver's heel cords as its still a concern I have as Dr Park has the final say, we dont want to be told the last week he needs it done, when we can get it out of the way now. Dr Park said maybe a need in the future but to try stretching first, the issue with Oliver is growth spurts and how he copes so I guess will never be able to say completely free if it until he stops growing but taking the spasticity away will prevent any further problems which was Oliver's main problem.
Oliver did more treamill work, an assult course and even climbed a wall today, in just one week this is amazing especially as on the Saturday he couldn't even roll or crawl each day he is doing more and more.
We didn't do much in the evening as starting to take it's toll on Oliver, we have had tears and tonight, had dinner in hotel and quiet one as a family.
There is a video here of Oliver walking 1 week post surgery
Wed 27th Oct
Oliver had another good session in physio with Michael, really proud of how he is co-operating so far, Michael is great with the kids. Oliver is very close to pre-op stage, now all there is to do is strengthen the left leg and to me the hardest part re-train the manner in which he walks.
Oliver is really working hard at his heel to toe although he will still go revert to toe walking on occasion, also has the hip swing which a little concerned about, I will mention in physio again tommorow.
After Physio we got on the Metro went to Walmart for some shopping and a McDonalds lunch.
In the evening we met up wth the other families for a few drinks, its so nice as you are with others in same situation. There are other familiies here that have same or simular concerns as us. I would like to say we don't regret having SDR done one bit as Oliver feels more comfortable, which is good enough for us and sure the rest will follow. We have to remind ourselves that it's not really that long since he had surgery and amazing he walking as well as he is.
Thurs 28th Oct
We had another physio session with Micheal this morning, mentioned my concerns to him so the session was spent trying to work mainly on the weakness in his hips.
In the evening we went out for a meal at the Hard Rock Cafe with Kiera and her family which was nice, it's amazing how you can just do that after only a week or so of knowing each other. I think Oliver feels a bond with Keira having had the operation the same day. I know i keep saying it but really can not believe looking at him he only had major surgery a short time ago.
Fri 29th Oct
Woke up with a mixture of feelings today excited that our other 2 kids coming out Monday, on the other hand bit apprehensive at the thought of Matt leaving us to get them.
We had pysio with Beth today, Oliver said fed up with treadmill work so Beth improvised and did a range of other things instead, from puzzles, wall climbing, bike riding, courses and games, This is what i like about it here they actually listen to the kids and how they feel, something we don't get much at home.
During the session we found out Dr Park leaving so its see him today or not at all, unfortunately Matt has to get his flight after a very tearful goodbye from Oliver we waited to see Dr Park.
Waited nearly 3 hours although to see the man himself, I would have waited how ever long it took. He said very pleased with Oliver, the chance of heel cord being done in the future is now minimal. I did voice my concern that Oliver walks with a tilt that was apparent before and after surgery, after looking at him Dr Park feels there maybe a slight difference in his leg lengths so now advised a lift in his shoe aswell to see if this helps. At first I felt a little deflated as told a minimal chance of surgery, but then told Oliver may have another problem although when Ithought about it a little more it's really nothing compared to what Oliver would go through living with the spacticity he had. We really can't thank Dr Park and his team enough for all they have done, its early days but Oliver instantly felt a difference as did we when doing his stretches this alone is a huge difference. We know with work, time and pateince Oliver has a great outcome and each day gets better. We would say for anyone offered this chance go for it, if only to make your child feel more comfortable in thier own body
Sat 30th Oct
Well time is really flying by, surgery is a distant memory. We got up today and skyped Matt, really surreal he was here yesterday and now at home our little girl was all over him, really can't wait to get them here.
We are so proud of all 3 of our children, this journey is not an easy one, now hoping we can put together some normal family life as the last year has been about raising money to get here, then the operation itself and now the rehabilitation. I believe if any family can get through all this it will only make them stronger.
Today me and Oliver joined the Powers and the Thomas's to the Zoo (this is free) and really big so will be going a couple of times, the kids dressed up for Halloween, unfortunately it was so busy didn't really get chance to do any of the events such as trick ot treat, it was nice to be out in the sun though. I decided to take Oliver's wheelchair even though he is back to pre-op state, I still have to remind myself he had major surgery less that 2 weeks ago. He really is amazing, all the kids bounce back from SDR very quick and for anyone thinking of going down this road, don't let anyone tell you it's awful as the pain they may have lasts a very short time compared to the pain they will have not having SDR. It was a tough decision at the time but one we certainly don't regret at all.
 
31st Oct
Started off the day feeling a little down, we really can't wait for the rest of the family to join us now. Started of very lazily then I decided was time to get out and go for a walk along with exercising Oliver (much to his disgust),we went of in search of the park, unfortunately I am not the best without my husband as he is the naviagator so came back, fortunately for us we saw the Power's family who kindly let us tag along with them for the day (yet again) we as a family starting to feel a bond with them as we have been on this journey together here so will be a little sad when it's time to say goodbye (yes Jason we will haha).
We went to city gardens where the kids had a little spash about, then dinner in the evening. I cant thank Jason and Sally enough for looking after me and Oliver this weekend.
1st-3rd Nov
Well the rest of the family are here which is great, hoping to spend some time together around physio appointments. Oliver is doing fantastic he is back to his pre-op state there has been lots of debate as to why he still walks with a limp, Joan the head of PT for SDR had come to look at Oliver, she believes Oliver doesn't have a leg length discrepency (which is good) she feels he is hyper-extending his knee so it appears different, they have decided to try taping the back of his knee hmmm we will see.
We now also have Olivers shoe inserts, these are great as go in the shoe, he will no longer have to wear his splint, without SDR he would have wore a splint until adult hood, Oliver really wanted rid of it, we are really pleased for him. Shoe shopping here we come and a chance for Oliver to choose what he likes for the first time in his life.
  
  
  
  
A few photos above of Oliver in therapy, the bottom left photo is all Oliver has to wear in his shoe (until walks heel to toe consistantly)We look back on this journey with not one regret, we have met some amazing people. We thank everyone who has helped get us here, the families we have met, Dr Park and his team for giving Oliver this chance and the therapists Robin, Beth and Mad Micheal as he is known, you have all been amazing to our little boy, words will never express how thankful we are and you will all be missed.
Anyone else embarking or thinking of going down this route you will not regret it, the hospital and staff here are fantastic.
I will still be doing updates although not daily, for us now its a little time to enjoy being a family again. Oliver is doing just great and will continue to improve and couldn't ask for more.
Thank you to all our family, friends, everyone that helped or supported us over the year, to the families we have met, of course Dr Park the team and all the therapists that worked with Oliver.
We Love you Oliver and so so proud of everything you achieve love Mum, Dad, Thomas and Amelie xxxxxx
GOODBYE ST LOUIS
well it's the time to say goodbye we will never forget this place as it has given our son a chance that we never felt he would have. Oliver had his last physio appointment with Michael on Friday, he told us "the spasticity is gone, isn't that great!!", just this alone made me emotional as this is the cause of Oliver's problems. Oliver has a range in his ankle now to have a normal gait with time and hard work, we know he will get there. We said a sad goodbye to the therapists Beth and Micheal who mainly worked with Oliver along with Jason, Sally and kids who have been through this journey with us from the start with thier daughter Kiera, to us they will be friends for life.
On our return Oliver may well look the same to people as he did before but the big difference is that the spacticity (tightness) is gone. He is still quite weak, especially on left side and will take time to build the muscle up in his legs as they never had chance before with the tightness. The gains Oliver already has is comfort, easier to stretch as his range gone up to that of a normal person, no splint in day at all and being able to walk heel to toe which is the start to normal walking. Oliver will continue to improve with hard work and determination we know he has with the support of his family.
Below are photos of Micheal and Beth the therapists that helped get Oliver to where is today and Oliver outside the hospital. I have also included a photo of the splint Oliver was desperate to lose, all he wears now is an inner sole and photos of the chidren we spent time with 5 of which also had SDR.
  
 
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