February 10
Jake looking very handsome at the Valentines Ball, one of our successful charity events. It's been four months since we started fund raising and planning to go to America. I can not believe how far we have come in four months, I was one of the family members who said we couldn't do this, we will never raise enough, £40 000 as if!!!, but I have been prove wrong! I owe a huge thank you to all those who have helped raise money and to my mum for co-ordinating it all xx
There has been times over the last four months that I wished we had found out about SDR when Jake was younger. It would of been better for him but also we would of only been a family of three!!!Everything becomes more complicated when you have other children to think about, Jake is no longer our only priority!!But there was no way we could miss this opportunity for Jake, someway we would find a way and Millie and Joe would have to just fit in!!!
Joe Storr, 15 months.
Jake with his sister Millie, 4 years old.
6th March 10 - The day before
What a day!!!!!! I have never been so tired and stressed. The day before we fly, there was washing, suitcases, bags and toys everywhere. Packing for two children to stay behind for six days, aswell as their America luggage and our luggage has been ridiculous!!! But it is done and we are ready to go. I have left my two youngest children at my mums house in bed and it was awful!! But we now have to concentrate on Jake and what is best for him. America here we come. I feel sad, happy, excited and anxious. It's now real.
Tina Storr
7th March 10 - Travelling
It has been a long day, we have been travelling for hours!! Jake was so good and was in good spirit, he kept refering to our trip as a holiday!!!! But he did chat a lot about going to the hospital and meeting Dr Park, I think he was just excited about the hotel and nice food!!!
I don't think I have ever felt this tired, here it is only half past five but we are going to grab a sandwich and go to bed. I'm excited for tomorrow , I want to learn more about what we are going to be doing to our son and have time to take it all in but at this precise minute I'm tired and feeling alittle emotional that I haven't got my babies with me. Tomorrows a full day at St Louis Hospital and I have to keep telling myself they wouldn't gain anything by being here and it would be a huge distraction for Jake.
Tina Storr
8th March 10- AAAHHHHH!!!
aaaaahhhhhhhh!!!!! Should of been a nice chillded morning, hotel breakfast and then a walk to the hospital!!! But instead been up since 4 because our body clocks are wrong and Jake has had diarrhea!!!! No breakfast, been to the laundry because we have used half the suitcase already!!!! But luckily the hospital don't seem too worried at the minute!!!!!!!!!! aaahhhhh!!!
Jake half an hour before we were going to meet Dr Park and his staff. We paniced!!
9.30
We went to St louis hospital for the first time. It is huge but a beautiful building, really modern and colourful. We were greeted by James Lee who has been e mailing us for months, we finally got to meet him. They showed us to a little room, were we sat and watched a dvd on SDR.
10.00
We were taken to a physio therapy room. Jake was asked to do lots of different tasks, moves while they assessed him and videoed him. Jake was now in good form, just constantly asked for his water bottle. We pleased he got through this!!
While we were here, Joan came to speak to us and ask us if there was any questions we had. We chatted for a short time, she was very helpful. I did ask about equipment and if we were able to get as much as we can here before going back home. they couldn't believe jake has been waiting for a frame for over a year and that he still has never been given a set a sticks. His sticks have always been borrowed from Paces. They also didn't understand why he didn't have swivel wheels on his frame, they make life easier for him. But they did say it might not be worth getting a new one, just adapting his as he shouldn't need it for long!!!!!
11.30
We went to meet Dr Park. Dr Park watched Jake walk and had a feel of his legs. He explained that Jake had an awful lot of spastisity from his waist down but for how much he has got he has been maintained well!!!! He asked if he has always been stretched etc. This made us feel very grateful to all those people who have worked with Jake and have helped us, school, Paces but also to Jake for always working so hard and being so determined. He has always worn his splints and tried so hard in everything he does.
Dr Park talked us through the operation and how he thought Jake would gain from having SDR. Ofcourse we just wanted him to say walk and run but there was a lot more to it. He spoke about sitting, standing and generally moving around, these will all become more natural to Jake and he will feel 100% more comfortable. He will be able to get involved more in activities because he won't tense up as soon as he starts doing something. Jake's posture is already very good, so he said after SDR he should be very straight and his legs, knees all in line. He said he will walk around the home and in school but may need sticks for longer distances and in the community for speed. My heart sank. But once I had time to think about this I realised this was a massive improvement from Jake's life style now. Just to see him playing with Millie stood up instead of on his knees would be amazing and to be at the same level as us all. xxxx
1.30
After dinner we had to go to Radiology were they looked at Jake's spine and marked his back. We didn't realise that they actually removed a piece of bone from his spine and don't put it back!!! Yuk!!
We found out what time he was having his surgery and when to stop him eating etc...
We then had a short walk back to the hotel and just chilled out for awhile.
9th March - Surgery
"I'm feeling a bit nervous about my surgery," says Jake when he wakes up.
"I'm off home, which way to the airport."
"OK, lets just get it over with!!!"
We are very proud parents, he was so brave and went to theatre with no fuss. It was a long wait all morning in a hospital room just waiting for something we were dreading.
We arrived at the hospital and was taken to a small room/cubicle. A nurse checked Jake and his history and then left us to dress him in some very trendy 'fish' pyjamas. He watched some television and moaned a lot about being hungry.
The staff were lovely a few different people came to talk to us about what was happening next. A lady called Genny came to talk to Jake and she was lovely, she showed him pictures and spoke about what how he was going to fall asleep. He got to choose a flavour for his gas mask, he chose strawberries and they brought one for him to have a practise with. Jeff the bear also had ago!!! Jake chose this teddy to go with him to theatre, his friend Euan bought him it. The other teddies stayed with Gav and I!!!
Dad helping with my 'fish' pyjamas
Waiting patiently with my friends!!!!
About an hour before they took Jake to theatre they gave him some medicine to make him dosey. This helped with waiting and separating from us. While Jake was in theatre we waited in a private waiting room. They rang us in there after about half an hour to tell us that everything had gone well, he was asleep and they had started.
We got a second phone call after about an hour, they told us everything was going well and that they would ring again. One of us left the room to go and get some crisps and a drink, you could leave and take a pager but we didn't.
James Lee came to see us in the room, this made the time go faster. He was lovely and just chatted to us about St Louis, SDR, the facebook page etc. We had just said they should ring again soon and Dr Park walked in, great timing. He said everything had gone really well and he was now in recovery. This was after about 3 hours.
Again we waited while he was in recovery and they eventually came to get us, again this was just short of two more hours. Jake didn;t bother to make an effort to breathe when they took the ventilator out so needed alittle assistance. We went to see him in recovery and he looked so poorly but fast asleep, They had warned us that his face may be swollen from laying on his front for so long in theatre and it was alittle swollen around his mouth and cheeks. We walked with him to intensive care but had to wait in the waiting room while they made him comfy. We had been in the hospital since 9.30 am and it was now 5.30 pm a long day.
All three of us got settled in his cubicle in intensive care, he was fast asleep and snoring.
Jake has slept most of the evening but when he has woke he has been in a lot of pain, shouting out about his back. They have turned him frequently but we have tried not to touch him so we don't disturb him. He has settled easily with a cuddle, he has wanted us to climb in the bed but we have got away with a kiss and stroke.
10th March 10- Day After Surgery
Jake is still in ICU, he has stayed the same all morning. He has slept most of the time, just waking now and again in pain. They have moved him from side to side every four hours and have carried on giving him pain relief. He is still on oxygen, this is really annoying him. "I want the surgery to be over." "I have had enough of this!"
Gav and I haven't had to use the parent lounge we have stayed with Jake, catching a nap on the chair or in Gav's case on the floor!! Being at the Park Inn has been amazing, I walked through the tunnels to the hotel at four in the morning for a half an hour lay down and a shower and then swopped with Gav. It was so handy and made us both feel better but I'm not sure I would want to stay there for the full time we are here.
The fast team visited us at about 7am, they just checked Jake over and told us that he should move to the floor later today.
Jake, a message from your teacher and friends at school..
We are all thinking of you, Jake, and hoping that you are doing well. We are following your progress and we are all very proud of you.Lots of love from all your friends, Mrs M and Mrs H at Holton le Clay Juniors. Keep that big smile on your face...and Portsmouth are still rubbish!!! xxxxxxxxx
I read this to Jake and he opened one eye on the last sentence ha ha xxx
11.15
Dr Park visited us in ICU. We had the opportunity to ask any questions and he said he wanted Jake off the oxygen. We will be moved out of ICU sometime this afternoon.
2.00
Jake decideds to scare us, his sats dropped and they struggled to get them back up again. They called the fast team and they decided to drop his medication to try and get him to wake up more.
2.50
Jake wakes up asking to be tucked up to his neck and for his PSP. He asks to go to the toilet and the American nurse replies, "It's ok, you go ahead and pee, you have a tube in your penis!!" Jake looks at me gone out! Gavin and I hold in our laughter! He is really croaky and has a sore throat from the breathing tubes but at least he is trying to talk now. We have been trying to get him to cough. I spoon fed him some water, he seemed to like it.
Jake's ICU room.
5.00
They moved Jake from the ICU to the floor, it is just like a ward but lots of rooms. He settled well in his new room and the nurse was fantastic. She was chatting about the operation and how she liked looking after SDR children because it is a miracle, so made ufeel very positive. She also seem to be very good, stopped a medicine saying he didn't need it anymore.
Jake's new room on the floor
Within a few hours Jake was awake - YES!! He chatted a little and even watched some television. He had a really good evening and came off his oxygen. He had some sprite off a spoon, apparently it is good for them and asked about food. Jake loves his food ans doesn't normally shut up about it, so this was amazing!!! He asked about his sisters and tried to get lots of treats out of Gav!! His throat also seems to have improved a lot but he was been shivering alittle and has had a temperature.
Gav went off to the hotel room about 11 o clock to try and get some quality sleep whilst I slept on the bed chair next to Jake. Jake again slept most of the time, just woke asking for cuddles a few times but no shouting out in pain. He did say, "I don't want to be poorly." "When can I get up." He has been a super star, we are so proud of him and feel guilty that he has to fight for everything. It is so unfair and he did nothing to deserve all this hard work and pain. Life can be cruel and you just don't always realise how lucky you are, to have the most simple things in life!!
Gav and I swopped over in the middle of the night, I went back to the Parkway for some quality sleep and a shower.
11th March 10
Jake has had an amazing morning. He is no longer attached to any machines or having any fluids. He is just asking for pain relief when he needs it. He has been chatting away to us, he can't wait to see Millie and Joe. He said he was starving so we ordered him some food from the patient line, it is brilliant. A huge menu to look at and you just pick up the phone and order. It came within ten minutes. "This is good service Mum, I thought I was meant to be in hospital!" He wanted to order pizza and a burger but we persuaded him to have toast, as it was only 8 o clock in the morning.
Jake eating his toast.
The floor is lovely, it is right at the top of the hospital. It has parent facillities, soft and cold drinks available and also a parent line to order food but we have to pay. The staff have been lovely and everything is so clean and new.
Hi There, what a lovely storey and WOW it's amazing!!! My niece has CP and his mother and I are looking into doing something along this line but have not got a clue where to start!!!! Any ideas??!! Good luck for the future! Claire x
We have put some of your photos up in school and Mrs M keeps letting the children know the news. We are very very relieved that Jake is making such great progress. Tell him he's a star and that perhaps Portsmouth aren't so bad after all. Oh...and a big hug from us all. Mrs M was very happy to see her cow! Isaac and Euan were very pleased to see their toys that they gave to Jake were on Jake's bed! Love to you all from all of us. We're all constantly thinking of you and talking about 'Jakey Boy'. xxxxxxxxx
Jake says, "I can't wait to see you when I get better. Man United are good. I'm missing you."
Today we have been able to turn Jake more regularly and tilt his bed alittle. He still has to lay flat on his back but he felt more upright when we tilted the bed. Gav has been reading Harry Potter to him and he has watched a DVD.
Just before tea time Jake got another very high temperature, he has been suffering from these since surgery. He slept for awhile but then he woke feeling uncomfortable, the nurse gave him some more medicine. Just as we were worrying about this, Dr Park visited. He wasn't too happy about it and said he needs to cough more and take deeper breathes to clear/open his lungs! He had a feel of his legs, so I asked if they felt looser. He said they did and showed me on his right leg but Jake was alittle unsettled so I didn't have chance to ask much more.
We have been trying to get Jake to cough and blew some bubbles with him, I hope these temperatures go away!!!
Once the medicine kicked in Jake was happier again so I went to the Hotel and collected all his get well soon cards. I waited until now because he is more awake and understands that he is now recovering. He loved listening to the messages and looking at his cards and gifts. "They are lovely." He had a big smile when I read out the football messages. He did have some of his gifts before, as he looked at some of them on the plane.
Hi jake were all missing you here at paces it's so quiet without you. Reese says " hope you like America" (reese is from America) lots of hugs and kisses lots of love from all you friends and teachers at Paces xxxxxxxxxxxxxxxxx
I read this to Jake but he was very sleepy, he just gave me a big smile.
12th March 10
Today I Get To Move
A good night but then he went and got another high temperature. He still managed to eat an omlette, so that was good.
He gotsome more messages on here.
Hi Jake, we're all thinking about you and all your school mates are wishing you luck and sending you their love. Keep being the brave little boy that we know you are and we're missing you loads. Big hugs and kisses are coming your way from Mrs Marsden, Mrs Hooley and Mrs Pearce. Take care mum and dad. xx
Grandma Jan misses you and loves you very much and is very proud xxxx see you Wednesday. Jake said. "See you Wednesday."
Mrs H and Mrs M have just looked at the latest news and photos. Mrs M has put some of the photos in the corridor and is giving out 'news updates' to Jake's friends here in Holton le Clay.It is very strange not to have Jake in school on Thurs and Fri, it has been VERY QUIET without him!!! He looks fab in his T shirt...very smart! We gave Jake 'STAR PUPIL' today and he received a huge clap and lots of cheers in assembly. (He can have the trophy when he comes home).We all send him hugs and love and to Gav and Tina too.
Jake had the biggest smile on his face and said thank you. He then said, "Man U are good but I am sticking to Portmouth, she has even got a Man U teddy on her desk!!! I'm guessing that is Mrs M. He asked, "Who is Mrs H looking after." ha ha xx He said,"Really did everyone cheer, I miss my mates."
9.30
Two physio therapists came up and spoke to us about what we can and cannot do with him. This was really helpful, especially as he is constantly wants to move around the bed. They then showed us how to get him out of bed into his wheelchair.
He was really brave and tried really hard to help. He looked so weak and in pain but did very well. I then had to have ago, it was hard work. We got Jake in his wheel chair and his head tilted back, I couldn't stop laughing. apparently it is normal.
We then went for a walk to get some fresh air.
Hi Jake, what a superstar you are!!!!Keep feeling better. we are thinking of you here in Canada. Lots of Love and Hugs from Mrs Waltonxxxxxxxx "Mrs Walton, how does she know?" he sends a big kiss. "Thank you for sending me a message." "Do they play ice hockey in Canada."
hi jake just wanted to say hope you feel good and can't wait to see you lots of love mrs postle "I'm missing you all."
Hi Jake it's your mate Isaac are you feeling better. We're all missing you lot's of hugs.xx "Good luck for Man U."
Hi Jake it is your mate Kalum. I hope you will get well soon and im thinking about you all the time. I can't wait to see you. Lots of hugs Love from Kalum. :) "Man U rock!!"
Jake I am so very proud of you, you look great up and about today, make sure you keep blowing those bubbles Charlotte got a temp too it will go if you keep blowing!! I will show charlotte your pictures tomorrow as she is asleep. Keep up the good work and make sure you work those physical therapists hard love kim steve and Charlotte xx
hiya mate. me and Isaac are missing you. we are allowed to play football at school now, can't wait for you to play with us. portsmouth lost 1-2 to birmingham. take care, euan "I am going to book an early flight to get back to play football!"
Jake has been really dopey today, talking slowly, slow reactions and slow with the jokes. Apparently this is normal and it is because all his nerves have been moved in his spine. It takes them awhile to get back to normal. But he is a lot happier now he can sit up in bed and watch television or play on his PSP. He wasn't too happy that we had to go to the therapy room for some physio but once he got there he tried really hard.
Dr Park popped in at tea time. He was pleased to see Jake sat up and smiling. He said he had been worried about him getting pnemonia!! but was pleased with his progress and would still be looking at being discharged sunday. He was pleased with his legs but said we need to really stretch his hamstrings, they are short. He said he gets this a lot from children from the UK and how the children from the UK are always tighter than children from America or other countries. He said Jake needs to do lots of walking, which I think he means not sitting in a wheel chair but we are lucky as Jake hardly ever uses his wheel chair and walks a lot around school etc..
13th March 10
Jake had a good night sleep. We got him dressed for the first time, as we had physio booked for 9am. When the fast team came they said his legs will feel funny today, rubbery and alittle numb.
Jake wasn't too happy about getting out of bed. He still seems to be in a lot of pain and really fragile, they always come and give him some pain relief half an hour before he has to go. The first half an hour of the session was a struggle and he moaned a lot but he got better and stronger in the second half. He is still so weak and it is upsetting to see him struggle.
The therapy room. Jake cheered up a bit.
Jake slept after physio!!! We were booked in again for 1 o clock, bless.
Jake was the same at the 1 o clock physio. He got very mad with himself, especially when trying to do something he could do before but would callapse because of being so weak. He was getting very frustrated with himself. It has been an emotional day today, he hasn't been able to get comfy. He scratched away at his legs and kept asking me to rub them. He has slept a lot more than yesterday and moaned a lot.
We miss you loads and send lots of love and kisses.come home soon because we have lots of stories to tell you.make sure you try your best with your excercises.love to mum and dad,see you soon Grandma and Grandad Storr "Thank you, missing you all and see you soon."
hi jake...jemma and tyler here... just a little message to say how proud we r of u... were missing u lots cant wait for u to been home with us again...missing u lots...luv u all xxxxx auntie susan still say's man u are the best xxxx "They are a bit good but there rubbish!, is Tyler being good?, missing you."
nice to see you with a smile on your face .I can't stop talking about you and worrying about you. I can't wait to see you when you get home! lots of love euan. xxxxxxx "I like you Euan, your my best mate ever."
What a long evening waiting for Antie Nikki and my babies. I couldn't beleive what had happened at the airport, they would not let Uncle Paul travel because of his passport that had been issued from when he was in the forces!! They had to make a quick decision in the airport and poor Nikki decided to fly alone. She knew how much I wanted to see the children but also how excited Millie was. We couldn't stop thinking about them allday and how hard it would be for Nikki. It is bad enough travelling with two young children but travelling with just Joe is enough!!!!
At tea time I moved all our luggage to hotel number 2 while Gav stayed with Jake. It felt really strange leaving the hospital grounds, I liked the look of the new hotel but I just quickly unpacked and shot back to the hospital. I stayed there until it was time to go to the airport.
I got to the airport at 8.45, they were due in at 8.50, from the minute I stepped in the airport I felt sick. They came round the corner at just gone nine, it was amazing to see them and I got huge smiles from both of the
14th March 10
It was strange waking up this morning in the hotel, I knew Jake had really early physio, so I planned to get to the hospital to meet him straight after. We had a lovely hotel breakfast and then used the hotel shuttle bus to get to the hospital. We were early so I took Nikki and Millie for a tour and then we met Jake at the therapy room. He was so pleased to see Millie, Nikki and Joe and Millie was so excited and sweet. I'm so proud of how they have all coped with it and that they have understood what has been going on and why.
I only saw the last 15 minutes of physio but that was enough to be so impressed with Jake. He was sitting by himself and correcting himself when losing his balance, he was rolling over with only a little help and making more effort to pull himself up. A huge improvement from yesterday and he was so much more motivated and happy.
Millie showing Jake the book she made him.
Shortly after we were discharged, so we set off to the hotel.
We had a relaxing afternoon in our apartment, Jake just chilled in bed watching television. By 4 o clock he was asking if we could go out for tea so we decided to go to a local restaurant. he really enjoyed it, he sat all the way through it without any pain or slouching and ate loads and loads!!!!! He really enjoyed it, just wished Uncle Paul was here too.
By the time we got back we were all ready to get in our pyjamas and go to bed. A really good day today, Jake was a lot happier and comfortable, we were altogether. In a funny kind of way I missed the hosp today. I feel like we planned this last week well, I missed Millie and Joe millions and some days thought I couldn't do it anymore but I know it was right for Jake. We spent many hours watching him and the clock, waiting for hours to pass by but we had no other worries or distractions. The hotel was within walking distance and I had access to my phone and laptop. Our time was totally dedicated to Jake and what he needed.
I'm missing you lots and i wish you could play football with me you superstar from euan.xxxxxx
Yes, Jake..everyone clapped and cheered you in assembly...completely spontaneously and it went on for a long time! I'm really impressed with your determination and your hard work with your physiotherapy, well done you! It is really odd without you in school, we do miss you and PACES do too. The children keep asking about you. Keep smiling, we'll see you soon. Love from Mrs M and class JM. xxx
15th March 10
Quiet day today, we all enjoyed our breakfast at our new hotel and then headed off to the hospital. Jake was booked in for physio at 10 am. We thought we would take Millie, Joe and Antie Nikki to the sibling playroom but unfortunately they had to be at least two. Millie still enjoyed it and it kept her occupied while we went to physio.
During physio Jake had some casts made for some new splints/braces, they are making two sets, ankle ones for the day and long ones for the night!!!!! Jake then did some really nice sitting on a bench, then with help pushed up to standing and stepped into his frame. His physio held him around his waist and he walked in his frame for about 5 metres. He had lovely flat feet and you could tell he is starting to take some of his own weight. He repaeted this three times and then it was time to finish. We are suppose to give Jake some medicine about half an hour before his physio to help with the pain but this medicine is making Jake so dosey, we chatted to the physio about this and decided to just give him Tylenol. This is just like our calpol.
After physio we went for a walk and found a snack bar and then got the shuttle bus back to the hotel. By this time Jake was ready to lay down and Joe thought it was bedtime (UK time) so we had a quiet afternon.
Jake is improving everyday and looking so much stronger but it is still really hard to move him around, you have to lift him in a certain way so that it does not pull on his back. Still in certain positions Jake will shout out that it hurts. He has started to move by himself, rolling over or getting onto his knees but once he starts he tends to get stuck. What we have to remember is, that iIt hasn't even been a week since surgery yet!!!
Now then my little friend, how r u holdin up. Just wantin to let u know that we are so proud of u with all the hard work with ur physio and there is no doubt with ur determination u will reach ur goal, (even if Pompy don't) ..ha ha. Carwyn, Kalum and Isaac read ur diary everyday which mum/dad has kept goin brilliantly, Sendin u big hugs and sloppy kisses to u and ur wonderful family. Keep goin Jake, love Anna (Mrs H).xx "It is good working with you, i'll see you when I get back."
16th March 10
An early start to the day, Joe and Millie got up at 3 am and they were running around the apartment.
Today we visited the Science Museum, it was really good but a little old for mine, they enjoyed the hands on activities but mainly the gift shop. Jake was booked in for physio at 2 o clock.
As we were going into physio we bumped into the Davies family, they came to see us on the ward last week to reassure us that it gets better, as thats what would of helped them the week before. It was so nice to chat with people who know exactly what you are going through and understand everything that has been worrying you.
During physio, Jake was on top form today, he was a lot more motivated and not as dopey. He enjoyed playing 'ice hockey' as he was so excited about going tonight. He did some brilliant sitting whilst playing this. We also went through the order for some sticks/canes. We struggle to get what we won't off the NHS so we tried to look at the long term plan and order exactly what we will need for the future. Jake chose blue ones!!!!! They are also going to fit some swivel wheels on his old frame, rather than buy a new one, as the frame would be exactly the same and we don't want him in that long term!!! Jake then had ago on the treadmill, they attched him to a harness so this would take some of his weight and he had to try and get his legs moving. He did very well lifting one leg infront of the other, again lovely flat feet. After doing this for awhile, Jake lifted both his legs up and starting singing, lar la lar la lar la lar!!! I must be a bad mother because I just burst out laughing ha ha.
After physio we went for a lovely walk and stopped at a coffee shop for drinks and ice cream, the sun was out so we sat outside.
Gavin, Jake and Antie Nikki (instead of Uncle Paul) went off to the Ice Hockey match, Jake had the biggest smile and was very very excited. I took Millie and Joe to the Union Station, it was really good, it had lots of places to eat and small shops. Millie had a go on a bungee trampoline and a couple of sit on rides.
Now I am worrying about leaving Jake on Friday. I know I am leaving him healthy and happy, the worst is over and by Friday he will be even stronger but I can't help thinking, have I done the right thing!! We planned this trip such a long time ago and had to consider so many things, the other two, my work, Gav's work and money!! I keep telling myself that it is just like when Jake goes away with my mum on holiday and that he will enjoy someone elses company aswell as be spoilt rotten. The main thing is, we were able to bring him over here and because of help from friends, family and the community we managed to do it asap. We could of stayed with Jake for the full month if we had waited until summer but didn't want to waste anytime so came up with another solution. I just know it is going to be so hard and Gavin and I will worry about him and miss him like crazy.
Hi Jake Storr What a brave young man you are nothing ever phases you,we are so very proud of you and really looking forward to seeing you when you get home,all our love to mum & dad,millie & joe see you all soon(ps) if the england fans think rooneys a superstar they havent met Jake Storr.All our love Grandad & Nanna Gilboy,Andy,Zoe,Pat,Dionne & big kisses from Mikey. "Thank you for the message, I can't wait to see you."
Jake you are doing so well!! When you meet Miss Shirley in the evening tell her you always gave Charlotte an apple!! she will give you one too or a cookie!! Keep up the good work you are a strong clever boy love kim steve and charlotte xx
17th March 10
The sun was out today, we took the children to the Magic House and then went for a walk in the park.
Jake had physio at 3 o clock today with Beth, I really like Beth she is the physio who comes and gets them out of bed for the first time and then follows them for most of their stay in America. I found myself asking her a lot of questions, she is easy to talk to and explains everything to you. Dianna is the physio you meet on the first day for their evaluation and also casts them for splints, she is also lovely and really easy to talk too. I have asked them both about Jake's feet, as he was due for surgery this January to straighten them from the knee down but we were advised to cancel this until after the SDR. After years of walking and sitting incorrectly, Jake's feet now turn out, more so on the right. SDR will help with this a little, as some muscles could of also been pulling on them but I can see from his physio sessions that this is going to hinder Jake in the future. Dr Park advised us to give it about a year until we decide to do anything but the physio therapists have really helped me to understand why it has happened and how we can help it now.
Jake worked reaaly hard today. "I don't need a break, I'm a tough cookie."
Later in the evening we went out for tea, we waited until Grandma and Grandad arrived. They were really pleased to see Jake and though he looked well.
We are still missing you and we will be happy when you come home.We are so proud of you and the way that you are working hard with your exercises.Love to you and mum,dad,millie and joe.See you soon! Grandma and Grandad Storr.
18th March 10
Today Jake was booked in for physio at 11 o clock. We took Grandma and Grandad with us so we could show them where to go and what to do.
Jake did very well at physio today but had a really bad case of the giggles!!! Anyone who knows Jake, knows that this usually means he can't stop and when he is giggling, he callapses into a big heap on the floor!!! He had to walk with his frame, sit on a bench and shoot some hoops, walk on the treadmil and stretch his legs in the gym. Unfortunately during the first couple of activities Jake spent most of the time on the floor but he finished on a high!! "I just want to impress my family."
Jake still can't hold all his own weight. You can see he is struggling to pick his feet up and has bent knees.
Look at that cheeky smile, a giggling physio session!!!
After physio we went on our last family day trip, to the zoo. Unfortunately dad wasn't feeling very well so had to go back to the hotel but we still enjoyed ourselves. The zoo is massive and could easily be two day trips.
Jake knows we all leave tomorrow and that he is moving to Grandma and Grandad's hotel room. I am so proud of him because he hasn't moaned or got upset. He takes it all in his stride and just told us that he will miss us loads. I hope we can do the same tomorrow.
It's Thursday today....where's Jake? Oh yes, he's in America...eating huge fries and working hard with his exercises!! I've put the latest pictures up in the corridor. Jake is fast becoming a celebrity! Everyone is asking about him and everyone is pleased to hear how well he is doing. Jake, you are looking so well! By the way, when Portmouth play Hull F.C. on Saturday, I hope they win...Mr H supports Hull!! See you soon, lots of love from Mrs M, Mrs H, Mrs P and all of class JM xxxxxxxxx "Does he? bring it on, I'm cheering for Portsmouth."
New photos in corridor..JT was telling me how much he is missing you. Just thought you would like to know!!! From Mrs M
19th March 10
They all had a lovely chilled morning, while I packed all the cases!! We took the kids to a local coffee shop for milkshake and ice cream. We were laughing at Jake because he now has really broad shoulders, it is so funny to see him looking different and we are noticing little things all the time! He sits lovely with such a straight back and broad shoulders!
Then the dreaded time came when we had to leave Jake. It was worse than I had even imagined, Gav and I were gutted and felt so guilty. Jake on the other hand didn't seem to care, he just asked if we would send him the footy results!! I'm so pleased that he didn't mind and that he just sees it as an extended holiday with his grandparents. We are still feeling guilty. We know why we made this decision, at the time we thought it was the right thing to do and it got him to America before his 9th birthday.
Jake had physio at 3 o clock and tried really hard. They said he now needs to do more for himself. We have been a little scared of this because he falls and callapses a lot but he won't get stronger if we don't let him. He now has the weekend off physio but he has homework to do with Grandma Jan.
20th March 10
Jake tried to sleep in his new leg braces last night, they stretch those tight muscles!! Bless. He said he looked like an ice hockey player and lasted a couple of hours.
We are at home worrying about him and he is already being spoilt!!! They have booked circus tickets for tomorrow.
No physio today but he has been trying to do more by himself and crawling around the room. He went to the hotel gym and did 1 min on the treadmill, three times. After all that hard work they went to the gallery shopping mall for a couple of hours and got a new blues cap!!
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Hi Jake Nice to see you on your feet and working hard. Keep up the good work and see you very soon. lot of hugs and kisses from all your friends and teachers at Paces xxxxxxxxxxx "I'm going to work really hard, see you soon."
Jake - glad to keep reading you are getting on so well. Finally may have to admit you were right all along after final score today Portsmouth 3 - Hull City 2 although I think it was a bit of luck towards the end for Portsmouth! Not looking forward to the rest of the Year 4 boys teasing me about the score on Monday. I still think Hull's the better team!!! Looking forward to seeing you back in school soon. Mr Hornsby
"Loser!!, Yes!!, I will see you soon."
Hooray...PORTMOUTH beat Hull 3:2.....!!!!!! Celebrate!!! I'm glad you are doing so well,Jake.We can't wait to see you. It won' t be long. Love from Mrs M xxxxxxxxx
"Yes!!,get in there!!, see you soon."
"I miss all my friends."
21st March 10
Jake walked this morning up the corridor to the next room and back again with only a lttle support. He is crawling about the room and managed to get out of bed himself. He has had his first bath and did some stretches with Grandma before going to the circus. It is cold and raining in St Louis today.
Jake had a fantastic time at the circus, he wants to go again!! He loved all the flips and liked the man on the high wire. Jake and Grandma met the clowns!!
He spoke to us both, told me there was one problem with the circus."This injury to my back, meant I couldn't go on the bouncy castle!!" He told me he missed us all then he spoke to dad!! They chatted about the football results and then Jake got upset and said he was going to pack his bags!! Grandma text five minutes later and said he was fine again, daddies boy!
22nd March 10
Jake had a restless night. After speaking to dad. "I am off to the airport, I miss my friends and my family." Grandma Jan had to sleep, he struggled to get to sleep. I'm afraid no more chats with dad for now!
Jake woke up all chirpy and happy. He walked down to breakfast in his frame, getting a lot stronger now. It has nearly been two weeks since surgery!! He is booked in for physio at 2 o clock today, hopefully they should see some improvement since Friday.
Jake worked really hard at physio, did some high kneeling and side stepping on his knees. Walked with his frame and some good standing with support. They said Jake's hips are really loose. He will need to learn to use some of these muscles, as thy have probably never been used. because of the spasticity that was there before.
Now then Jakey, how you doing? Being well looked after and spoilt by the sound of things. Missing you loads...NOT!!!... Only kidding, its not the same without you and can't wait for your return. Understand Pompey did well at the weekend beating Hull. Bet Mr Hornsby isn't very happy and has had lots of teasing from the kids at school. Mrs M is doing a grand job keeping all your friends up to date with your fantastic recovery. Keep up the hard work and we'll see you soon. Love and sloppy kisses Anna (Mrs Hooley)xxxxx "Missing you too, NOT!" He sent a sloppy kiss back.
Hi Jakey!! seen the video of you walking and you are doing AMAZING!!!! well done babe your a star!!!! me and Paul are missing you lots and cannot wait to give you a good 'huggle'!!! Paul says City are still the best team and Pompey had a lucky win at the weekend! hope Grandma is spoiling you and hope Grandad is not too grumpy!!!! see you soon xxxxx keep up the hard work!!! "City are rubbish, Pompey are still the best!!" He sends lots kisses for Nikki, not Paul.
23rd March 10
Jake is very home sick, so having some dramas. Grandma is trying to keep him busy. They are going to see the arch this morning before physio at the hospital.
The staff at the hotel have been lovely and have given him any treat that he wants from their shop. They have told him that at the weekend the hotel will be full of basket ball players. They will be playing in a tournament that he can watch on tv. If there are any tickets left they will give us some, so hopfully that will keep him here a bit longer!!!
Jake went to see the Arch and went all the way to the top! He then went for physio and did very well, he needs to work really hard now.
Hi Jake, you are looking amazing. You must be working really hard but Im sure Grandma and grandad are spoiling you too, and so they should . You are a star Jake and we are all proud of you. Hey how did you like the ice hockey. Matts mates were well impressed that you went to see the hockey. Unfortunately the Canadians like hockey better than football.but Im sure you would be able to turn them into footie fans!!!!! Keep up the good work Jake. We are all thinking of you.Lots of love from Mrs Walton, Matt and Katie and Mr Walton xxxxx "I liked the hockey but love football, I got a signed puck and saw four scraps!" "Do they like basketball?"
Hiya Jake. It's Tuesday today...we are doing French! Mrs H and I have just printed out the latest photos for the gallery in the corridor. Mr H was well gutted that his team had lost. My family couldn't understand why I was so keen to find out if Portsmouth had won or not! They thought I had gone mad!!! You are looking so good on the photos...very well and STRAIGHT! We are really missing you. People are asking about you all the time. it won't be too long until you can come to see us in school. We are all looking forward to that VERY much. Lots of hugs to you form Mrs M and all the class.xxxxxxxxxxx Jake is very home sick at the moment and he is finding evenings very hard. but did say, "Man u supporters are rubbish!! and I will see you on the day I get home." "I am going to a basketball match tomorrow!!"
Jake is very home sick at the minute, this is making it harder for us all. We can't really speak to him, as he seems to be better when he is distracted from us. This is not easy and we wish we could of stayed out there with him. Unfortunately when we booked our flights, we were not even at £20 000 and had to do what we thought was best financially. Looking at it now, sod work and money!!! He now has a basketball game booked for tomorrow night, so hopefully he will have a good day tomorrow
We had a really nice evening tonight we allowed Jake to have a nap so he could stop up later, he sat at the bar watching the basket ball game on tv and entertaining the other guest with his banter, no tears tonight so maybe we over the worst. Tomorrow we have booked tickets for the local basket ball game ... Jake is so excited.
24th March 10
Jake woke up this morning with a very positive frame of mind. Jake did really well with his excersises this morning and you can see a difference in his ability to do them. He tried really hard, a good start to the day.
Jake walked to breakfast then I asked him to do a job for me. He walked to reception to change some dollers for the washing machine, he said to the receptionist, "She does my head in she makes my lifehard!" He walked back to the bedroom, brilliant!
Not a lot of physio today as he was trying on his new splints and they were putting swivel wheels on his walker. We also got the new straight sticks but they had not ordered the tripods, so they are sorting those out for us.
Jake was so good this morning but did not co-operate this afternoon He said splints hurt him but was having them on!! After a quiet word he agreed to wear them. He wore the splints for an hour and now we have to build this up through the week. He also received some hinge splints for the night to go under the blue knee immobilisers but one of these was not right. A funny day
We are still missing you loads and looking forward to seeing you soon.We have lots of stories to tell you when you come home so keep working hard with your excersises. Hope you enjoyed the basketball ,see you soon,lots of love and kisses Grandma Kay and Grandad Dave
We had a really good time at the basket ball and had fantastic seats. Jake wants his friends to see these pictures please. He even managed to catch the eye of a pretty cheerleader who ran up the steps to give him a mini basket ball, always been a charmer!! The st Louis team won.
25th March 10
I spoke to Jake today, he asked, so we thought we would give it a try. He was fine, asked about Millie and his dad lots and he told me all about the basketball game. He sounded so quiet, I think this time it made me worse!! But we are counting the days down now and can't wait to see him.
Jake had a good session at physio today, he worked really hard with the promise of having his psp in the taxi on the way home!! He has got to walk more and more. His splints are nearly sorted but got to go back in the morning and they have ordered his tripods. He walked with his sticks for the first time but needed a little support. Jake now needs some new trainers.
Jake was very kind and offered to do a job for Grandma, getting some change from the reception. She said this was very kind of him. "If thats ok, I will go in my wheelchair."(cheat)
Come on Jakey...you can do it. Only a little while before you will be able to come home...so hang on in there, do what you have to do and keep doing well. You are such a good lad! We can't believe how great you are looking and the class are always asking if I have any more news about you. BIG HUGS and XXXX to you from all of us at Holton le Clay Juniors. See you soon."I will, see you soon."
27th March 10
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For a couple of days we have been worrying about the progress Jake is making in his mobility, should it be more?? Grandma Jan spoke to the physio and they said he has to do more and more independently. Grandma feels Jake can do more but because of the slowness and pain he is just not bothering. When Jake is at physio they get him to do so much more!!! But last night, Jake did really well, he walked down to dinner, then to the desk for change, then to the bar for a drink and then walked back upstairs. He can do more, he just needs motivation which is difficult to find in a hotel but we are sure in his own enviroment this will be much easier.
Jake has never had so much equipment of his own!! and we are still waiting for more!! Thank you everyone, it is such a struggle to get all this at home and is only ever borrowed!!
Jake chose blue and gold splints for Portsmouth, I'm not sure!!! Short ones for the day, long ones for the night.
A busy day, went to the hospital twice, once to sort out his splints and once for physio and shopping for some new trainers. Jake then had a really good session on the treadmil in his new trainers. Last session now until Monday but we will still be doing his stretches and walking lots.
From Class JM..Friday 26th. Hi Jake we're all missing you. We're excited about you coming home. Mrs M's mum has made an extra special present for you. We will give it to you when you come in to school.Have a safe journey home and see you very soon. Hope Portmouth win against Stoke City on Saturday. Safe journey home. All your friends in class JM shout HIYA JAKE!!!!! XXXXXXX "Hi everyone and thank you for my present, I can't wait to see you."
Jake's last weekend!!
"Have I been good and will you tell my parents!!!"
"His snoring is doing my head in!"
"I really like Bahram, he is a nice chap."
Grandma Jan's friend from Chicago travelled over to see them They have had a lovely weekend. They needed some company, I know when we were there, even though the people there are so lovely and friendly, you sometimes feel lonely. You are not on holiday! and the days can drag and be hard to fill. It isn't as easy to do activities and you are living in a hotel. The days seem so long.
Jake, Grandma and Grandad have all really enjoyed having company. They spent lots of time shopping!!!
Jake seems to have turned a huge corner and is back to his old self. He has been full of it, really happy and non stop chatting!! We all spoke to him, he said there was only 3 more sleeps and asked about everyone. He had a lovely chat with Millie and we even let him speak to his dad!! Jake has been walking with his frame all weekend. They say he should be able to go home doing what he could do before but be more tired and need more breaks. He is not back to this yet but has come on a lot in the last couple of days.
Hiya Jakey, you are doing incredibly well, not long now until you get home so keep concentrating and do your best as you always do! everyone misses you as much as you miss them but you need to keep your chin up. Euan is soooo proud of you and what you have achieved. keep it going and see you very soon, love jo, bernie, euan and callum.XX
"Thanks mate, can't wait to see you. My mum is booking me a lazer party for when I get back. I am comimg to school on Thursday."
29th March 10
Jake's back looks brilliant.
Jake had his last appointment with Doctor Park today. He was very pleased with his recovery. He said he needs to walk, walk, walk!! He doesn't want to see him in his wheel chair or crawling. We realise these are habits we have got to also break at home, as Jake does crawl in the house sometimes and 'W' sits!! He still thinks Jake will walk independently and need crutches for long distance. The difference this will have on Jake's life is unbelievable, Jake spends a lot of time looking up at people, whether this is in the house on his knees or sat in his wheel chair. It would be brilliant for him to be able to answer the front door stood up, walk with his sister and brother, to hold my hand and walk to assembly with his peers. These are all our dreams and hopefully one day in the future these will come true and I know if jake can do these, his next aim will to be to stand on a footy pitch!!
Jake told Mrs Walton when he was 6 that his dream was to stand on a football pitch, I hope we have all made this dream come true.
Hiya Jakey...not long now until we see you. Portsmouth lost against Spurs on Saturday (my class told me to tell you they were going to be playing Stoke..sorry). It will be great to see you on Thursday..we can't wait. Love from Mrs M and Class JM. XXXXXXX and a BIG HUG too!!"AAAAAHHHHH!!!!!!!!! no!! Looking forward to seeing you."
Now then mate, how u doing? Saw the photo of u stood next to the cheerleader with a great big smile on ur face,. She's not as pretty as me though, is she Jake? Not long now, only 5/6 more sleeps b4 ur home, so u keep working hard & be good for grandma & grandad, C u soon u little smoothey & take care, love Anna (Mrs Hooley)xxxxx. Oh ya, nearly 4got what did pompey not do against Chelsea!!! ...SCORE...
What do you mean 'AAAAAGH!!!' ? Cheeky boy!! I hope all that shopping is for me!!!!! It's great to hear you are doing so well, see you very soon now. Love from Mrs MXXXXX Jake said he meant about Pompey not the hug!!!
Happy Birthday to you! enjpy your Easter break back in Grimsby and don't forgrt to walk walk walk! see you soon love everyone at pacesx "I am and not kneeling at all!!"
Going Home!!
Jake was so excited to be coming home. He had a safe journey and arrived back in Humberside at 10 am Thursday. Gav and I was so excited, he came through with the biggest smile ever. We took him straight to school to see his friends and teachers. He was on top form!!! Since then we haven't left the house.
Since Jake has been back he has had lots of visitors and we have celebrated his birthday. I can't believe he is 9! The last two days he has smiled non stop. He has even taken to all the new rules, he told me he has to now sit in the bath, no kneeling, no crawling!! I can't believe how well he copes with everything, he is a positive young man! He even asked to wear the knee immobilisers for bed! Lets hope he stays this positive for all the physio and hard work he has ahead.
4 weeks post operation!!
It has been 4 weeks since Jake had his operation. We are just starting to say that he is nearly back to how he was before he went. During the last couple of days he has been walking around the home with his tripod sticks without ourselves holding him. He hasn't mentioned any pain in his back and is becoming much more independent. I use to meet him at the toilet and I have found myself saying that again, "Make your way there and I will be there in a minute!!" He has started to want to try and stand unaided and has been doing this for a couple of seconds but today for the first time he did it for 10 seconds and was so proud of himself.
Jake is in good spirit, he has been co-operating with all his stretches everyday and really tries to do what is asked of him. I am so proud. We have been setting him small challenges and he hasn't once refused. If anything he has been giving them 100% effort. He wears his knee immobilisers everynight, all night and has only once this week, woke up asking us to remove them.
May 2010 - 8 weeks post operation!!
Jake is an inspiration. It has been over 8 weeks since his surgery and still everyday is hard work and a struggle for him. He is still not back to his usual physical self. The biggest obstacle for him is having to pull himself up onto a chair, sofa, bed but he is slowly improving. He has not once got frustrated or mad, he gives everything 100%. I find it very hard to stop myself helping him when he is struggling but know it is important that he gets these muscles working. He still wears his knee immobilisers everynight and often reminds us not to forget!!
He is still using his walking frame and tripod sticks. He is a lot slower on his sticks than before the operation, so school are having to give him longer to get around and he is very unsteady. The hardest part at the minute for us, is when Jake buckles. It is as if his legs/muscles just give up and can no longer hold him up. Jake is a heavy nine year old, so this can be really difficult when helping him. Jake will try really hard to push down and take his own body weight.
June 2010 - 10 weeks post operation!!
It feels like we never went to America, it seems such a long time ago. Jake is still progressing but slower than we probably expected. He seems to be more patient than ourselves! He is still the same on his tripod sticks but can now stand unaided for about 20 seconds. He could stand unaided before he went for the operation but you can tell he has a wider gait and his feet are flat. He is still sleeping in his knee immobilisers and tries really hard with all his stretches, he does seem to have more control of his hips and knees when doing his stretches. A lot of Jake's tightness was around his hips, so his hips are really loose now. We were worried about his back, as on the scar it is quite boney and has a big lump but after speaking to other families this seems normal. Jake was also complaining about back pain but we think he is sometimes using this to his advantage!! I think he only gets alittle back pain if he throws himself back.
Jake received his brand new BMX trike this week. He loves it. After 2/3 attempts, he can now ride it independently. This is something Jake has never been able to do, so this is a huge improvement. However he does need to work on his steering!! He is really proud of himself and is really hoping he will be able to go on his BMX with his friends.
I have been searching about SDR surgery and came across this link. My daughter Jade who is 8 is travelling to St Louis in July for surgery with Dr Park. I think it is amazing that so many children are being helped over there but it took me 8 years to find out the help is out there. I wish Jake all the best and hope you are all well.
I read Jakes story and it is truly inspiring. He is a brave and handsome little boy. Best wishes. I am a mother of 4 and grandmother of 4. I feel as I was blessed with no debilitating illnesses to my family. Your family is very inspiring
October 28th 2010 Seven months post SDR
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First sorry this web site has not been updated for some time but with three children and work live is busy..
Jake continues to love his bike and can ride this much more independantly now he has enjoyed his summer of being able to play out on the field with his friends when he is at Grandma Jan's house. His friends are so good and loyal and put to shame adults in the way they handle Jake, this is girls and boys..only the other day they Knocked on Grandma Jans door to say Jake was ready to come in, Grandma Jan went over to the field entrance to get him off the field only to find that by the time she got there one of the boys had held Jake walked Jake over gravel up hill and then told him to hold onto the wall while he went back and carried his frame to him, its so nice to see.
We have bought Jake a treadmil as we were concerned that during the bad weather he would not be able to get enough walking in..he is very good on this and can do upto 10 min at a time.
As Jake has progressed he has developed a couple of injuries in the way of pulling a muscle in his back, this set him back and frustrates us so must frustrate him.
August 10 Jake started to walk independantly and although very wooden he was walking.
Since we returned from St Louis in March 10 Jake has not seen a NHS Physiotherapist and at times we feel very isolated. We did take Jake to see a private one at £45 for 30 min but he just sent us away with Exercises, which it is what we do anyway so we decided to go it alone again.
When Jake see's his progress he loves it and a couple of his quotes were " I think this physio is working". and " i think that trip to America was worth it."
Holton le Clay school have been very supportive of Jake and encorouge him to walk when ever possible.
October 10 BBC Look North contacted us again for a update on Jake they went into his school to flim and interview him, as always Jake was a star and told it how it is quote " i never thought i would be walking up a corridor like this" he was interviewed without his mum and dad with him and did us proud as ever.
Since then Jake walking has improved more and more it is becoming more natural and fluid, and actually went for a walk outside with Grandma Jan walking independantly for about 100yards on uneven ground.
Jake had an appointment with his Paediatrician during October 10 and she had not seen Jake since surgery and was not supportive to us when we asked for xrays. When she was told that Jake had been to America and had the surgey she tried to say she knew about the surgery but was unable to say its name fully but when she excamined Jakes legs she was impressed and when he showed her his walking (showboating ) as Jake calls it she said he was doing very well, and a lucky boy..( Lucky right having his health problems is not down to luck) she wants to see him in fours months, normally only sees him 6-12 monthly.. Also said she would write to Physio and splint department to see if they will give us some support in these area's (not holding our breath) but at least she appeared to be on our side now.
We are in the process of making a mini gym in the home so Jake can as he grows take more responsability for his physio. We have found equipment on line that will help with this and an order is in place.
Jake continues his kick boxing class and this also helps his physio and they wan him to start progressing to his first belt, for a child that could not stand independantly this is quite a goal to aim for.
When Dr Park see's Jakes video's he sends us a message to continue walking Jake and he is pleased with his progress, if we e mail the hospital for advice they answer the same day without this we would have nothing.
Jake continues to progress and make us proud as always, and we truly believe he will get there thanks to all that helped us and of course Dr Park and his team in St Louis.
Jake was invited to be on the Grimsby Town Football team photo something he really enjoyed being an " avid football fan "
We have also this summer enjoyed a family holiday in Lanzarote great physio in the pool everyday.
Dec 3rd 2010
Well what a year, it is just over a year since we started on this journey, and we have not regretted it one min, although at times it has been difficult, both emotionally and physically.
Jake is walking more and morre around the home, and can actually be a pain as he is into the fridge and can see on work tops and pockets money he finds. But recently was able to carry a bottle of juice to his younger brother, something he is very proud to do and has never been able to do before..His walking is becoming more and more natural lookng, but it is hard to break old habbits at times. Small injuries can also hold progress but he always gets back to where he was very quickly.
We have managed to find a conducter of Conductive physio in our area, and have now started regular sessions with her.
Also Jake is dropping to one day weekly at his special school and four in main stream, this is a big thing to a very sociable little boy and his education so he is sooooo excited about this.
In the New Year we are looking at booking our flights to return to St Louis for Jakes review...
Jake is now able to stand independantly, and dance which he loves to JLS and we will be joining the other families at a party for the UK children and families that have been to St Louis or are fundraising to get there so hopfully he will show off his dancing skills there..in January 2011, and meet other children who have been through the same surgery..
January 2011
Since my last update there has been several changes to Jakes daily life, he no longer attends Paces Conductive Education three days weekly, now attending only one and four days at Holton le Clay Primary. The injuries he was getting seem to have got less.
I have also found a Condutcter locally and she is now working with Jake on a regular basis in the home and Jake is more than happy to work with her.
Jake has an appointment with Dr Davies his consultant in Sheffield, and this went well, he is still concerned about the position of Jakes feet, ( his muscles have been so tight they have distorted the bone) and this may need correcting. Dr Park does not feel this is needed at this point and we will wait until we have seen him in April 2011. We have also noticed Jake walks with a crouge and again we will discuss this with Dr Park, and Jake may need his Hamstrings lengthened, this will be done in St Louis if Dr Park agree's, it is a day surgery procedure, and should help the crouge position.
Holton le Clay school have grown in confidence with Jake and what he is able to do so recently have encorouged Jake to walk around school much more often independantly. Half the battle is breaking old habits and Jake has always got into crawling position to move from one place to another, this is also changing he is now automaticly standing and walking. This is a very strange feeling for the family to see him suddenly move from one place to another. A good description of this is a giant toddler as he is interferring in things that he could not before, taking things from work surfaces etc. I have also noticed that Jake is not wearing his shoes out like he did before because he is not dragging his feet but placeing them down.
In two weeks time we are attending an SDR party where all the children who have had SDR or are going to have it in the future will meet, one of the physio's from St Louis is travelling over to attend and a magazine are writing a story. Jake was the 4/5 UK child to have SDR and with the media attention more families have found out about it and about 40 children from the UK have now benifited from Dr Parks specials skills. We hope one day SDR will be avaialble and offered to suitable UK children and at this point this does appear to be on the cards, however it will be a long time before the NHS would fund this.
We have had no imput from the NHS for Jakes aftercare, and not seen a physio since returning from St Louis, some families in other area's however have had good support it appears to differ from area to area.
The Party was a great sucess and it was lovely to see all the other children that have had SDR since Jake, they all had a picture taken together.
May 11 One year and two months after SDR
Jake continues to progress although we do keep having injuries due to his muscles being so weak, but each time he recovers he does not seem to lose his progress.
Jake is now walking around school and home most of the time although this does depend on his concentration. Jake has turned Ten years old and appears to have developed an attitude with it, we don't remember wrapping that up for him.
He loves playing outside with his friends and with the summer coming he will be able to this more. He is taking his cycleing provisancy on his special bike with his school friends.
Jake walks home with his walker to Grandma's house when the weather is good, again something he loves doing.
Jake has been back to see his consultant in Sheffield and Grimsby both were inpressed with his progress. He has been referred to a dietian because he is so slim even he eats like mad, but as he burns off so many calories with the effort in walking, he may need some extra supliments.
We have managed to get some really good splints for Jake from Grimsby hospital very similar to the ones madde in America, much softer and more flexible.
In one weeks time Jake will return to St Louis to see Dr Park but also he will see Dr Dobbs a close colleage of Dr Parks, Jake may need Hamstring surgery, this is to release his hamstrings, because as he grows they become tight causing his knees to be pulled together, we will not know if this will be done until we get there.
Jake is a little nervous about going back to St Louis, he said " i am bit nervous and scared," when asked why he replied " its because i dont know what to expect."
Jake will be then going over to Orlando with Millie and Joe for a few days, and they are all so excited about this.
All the family continue to do physio with Jake but we have found a local physio conducter and she has been working with Jake on a private basis, how much longer this will continue we dont know as the funds are getting low.
So many more children have now travelled to St Louis to have SDR most have cp milder than Jake, but all have had positive experiance's, and it looks like SDR will soon be available in the uk in Bristol, on a private basis. There are no other Grimsby children we know off to have followed Jake but lots of families from down South.
20-5-2011
Well drama again as we misunderstood the e mails from St Louis and we do not have enough money for the surgery, Jake may have when Back there next week. Tears and upset again. The hospital have been so good and offered to allow us to pay with installments, so we are having to ask again for peoples help, something we did not think we would have to do.
We are now trying to organise a couple of events to help with this.
We were one of the first few familes from UK to fund raise for the money to help Jake so we concentrated only on raising the money needed for the SDR surgery, we did not take into account that we would have to make a return trip or that we would have no NHS physio or that Jake may need more surgery. Families that have followed us to St Louis have been more informed than us and so they aimed to raise a higher amount, maybe we should have been more aware but our goal was to allow Jake to have SDR, and with the help and support of so many wonderful people we did it.
Jake has a year on gained so much from SDR he can ride a bike, he is tall and stright, he no longer complains that we hurt him when moving him around, his legs are free from stiffness. Jake is able to walk arounf the home and school most of the day, all these thngs have changed his life and we are hopfull as he grows he will continue to progress.
Dr Parks will give us more idea of expectations when we see him and of course we will update his web site.
