Me and Chris are really looking forward to our first half marathon a week on Sunday. Our lovely friends, the Wilkinsons, are having our children for the day, as we'll be setting off early and coming back late. I did a morning spin today, love the Saturday morning ones as I can do most of it still asleep lol.
Christopher looking 'PINK' today, we've never had a pink boy, he's always been quite blue in his complexion because of his heart condition. I sometimes cant stop stirring at his toes as they're so normal in colour now.
Two of his friends, from the estate behind our house, are playing on the xbox with him at the moment. He's only seen a few of his friends since coming home and this kind of thing does him the world of good, as he spends all day everyday with me. He's a very sweet, well mannered boy, just the other night he turned to me and said, 'at Christmas I'm going to spoil you Mum because you've done so much for me lately', arh bless. Then half an hour later when I was giving him his medi's he looked up at me and said, "I could strangle you at times Mum." Cheeky little charmer! I had to laugh though.
oh, oh, oh if you're thinking about sponsoring me, just go to http://www.justgiving.com/JustineForest every penny counts and, it's an amazing charity, we certainly wouldn't have managed without it whilst we where at Alder Hey xxxx
me
Before/After
Sunday 11 September 2011
Wednesday 7th September
Had a really bad day yesterday worrying about this blinking drug no one wants to prescribe for my son. To me it's so simple, I cant believe medical professionals would put my sons life at risk. Something really needs to be done, well, that's when I find a spare moment!
Tuesday 6th September
We didn't go jogging this morning, we went tonight at 10pm in the wind and the rain, god that's commitment for you. We did five miles instead of 2/4, yay! Came back soaked, but it will be all worth it. I don't care about times, all I care about is starting the Great North Run and finishing it without stopping, I don't want to walk any of it. http://www.justgiving.com/JustineForest
It's also giving me something else to concentrate on, as I'm having awful problems getting one of Christopher's drugs prescribed by our family doctor and I'm now thinking about contacting our MP about the situation. It is ridiculous, Christopher consultant wants him on this drug and if he wasnt he would be on oxygen instead, it's a no brainier for me, but our doctor is having none of it and has refused to prescribe it. Now we either have to go all the way back to Alder Hey every time or Christopher's Cardiac Liaison Nurse is going to try to get his cardiac doctor at RPH to prescribe it there instead. That still is not a perfect solution to this very worrying situation. His cardiac nurse describes this drug as a miracle in cardiac cases and more & more children will eventually be on it. I think it's disgraceful other family, some living in difficult circumstances, without transport or the money for petrol will then have to travel miles to get it. Our doctor did say another thing he wasn't happy about was that it wasn't licensed for children, well 70% of the drugs used on cardiac children at Alder Hey aren't licensed as you cant do clinical testing on children. Alder Hey, in fact, have done their own research into this drug and that's why they call it a miracle drug!
It's also giving me something else to concentrate on, as I'm having awful problems getting one of Christopher's drugs prescribed by our family doctor and I'm now thinking about contacting our MP about the situation. It is ridiculous, Christopher consultant wants him on this drug and if he wasnt he would be on oxygen instead, it's a no brainier for me, but our doctor is having none of it and has refused to prescribe it. Now we either have to go all the way back to Alder Hey every time or Christopher's Cardiac Liaison Nurse is going to try to get his cardiac doctor at RPH to prescribe it there instead. That still is not a perfect solution to this very worrying situation. His cardiac nurse describes this drug as a miracle in cardiac cases and more & more children will eventually be on it. I think it's disgraceful other family, some living in difficult circumstances, without transport or the money for petrol will then have to travel miles to get it. Our doctor did say another thing he wasn't happy about was that it wasn't licensed for children, well 70% of the drugs used on cardiac children at Alder Hey aren't licensed as you cant do clinical testing on children. Alder Hey, in fact, have done their own research into this drug and that's why they call it a miracle drug!
Monday 5th September
Daddy (Chris) & myself were up at 5.30am this morning doing a 4 miler. Training is going well and I'm feeling good doing it , well I sat on my bum eating for 6 weeks while we where in hospital. By teatime, Christopher was feeling a little better. It's so worrying at the moment, when he first went for his surgery, I thought it started and ending with his heart op, I cant believe all these weeks later we're still no further on in our recovery. I'm thinking now that this may take sometime. Maybe Christmas when Christopher's off some of his drugs and he's settled back into his school and his football, we might see the light and this will all be a distant memory, but for now our lives our made up with nursing Christopher, hospital appointments and running. But, after all we've been through, I know we're extremely lucky that we have each other and we're all at home together once again. I love my family! ♥ http://www.justgiving.com/JustineForest
Sunday 4th September
Christopher started being sick last night straight after his medi's, which isn't a good thing to do. He's been off for a few days and seems pretty lifeless and frail at the moment. It's really hard to tell if it's because of what he's been through or a bug he's picked up. We rang Ward K2 to ask what they thought and they said it sounded like a bug and nothing to do with his recent surgery and if we got even more concerned we should take him to our local A&E. That did put my mind at rest a little.
Alex (our middle daughter who's 13) returned home with a big solid silver cup in her hand. She'd only just gone and won the Preston & District Ladies Charity Golf Cup, whoop whoop. That certainly cheered us all up, even Christopher x
Alex (our middle daughter who's 13) returned home with a big solid silver cup in her hand. She'd only just gone and won the Preston & District Ladies Charity Golf Cup, whoop whoop. That certainly cheered us all up, even Christopher x
Saturday 3rd September
Christopher was well chuffed, he was on the front page of our local paper and page 3 hahaha. The story covered all of what Christopher has been through in hospital over the last 6 weeks. Lovely story, very moving,even had me in tears and I lived it!!! He's a star and so brave, have no idea where he gets that from??? xxx http://www.longridgenews.co.uk/news/local/brave_10_year_old_s_heart_op_success_1_3727613
Friday 9 September 2011
Friday 2nd September
Up at 5.30am today, the fear of running a half marathon is stopping me sleeping lol.
Ran 4 miles, feel flipping fantastic now!
Ran 4 miles, feel flipping fantastic now!
Bank Holiday Monday 29th August
Just started our training for the Great North Run. It's a killer, haven't run for 5 months and that was only for a month or two, I only ran at school before that. Me and my huck of hoo, Chris, are doing it for Ronald McDonald House Charities, you can sponsor me through my justgiving/justineforrest page, every penny makes a difference and it's a charity very close to our hearts as we've stopped there on numerous occasions through Christopher's treatment at Alder Hey and it's totally run by charitable donations. It's a wonderful charity and we'll also be running the London Marathon next year as well as other events we're going to be hosting throughout the year. The thought of what Christopher has just been through will get me to the finishing line, i'm so determined to run the 13 miles without stopping.
Started back at the gym this morning. 1 hour spin, that sorted me out lol. Cant sit down now, whoops
Started back at the gym this morning. 1 hour spin, that sorted me out lol. Cant sit down now, whoops
Saturday 27th August
We went to Chipping Show today. Christopher still very weak & frail so we took him in his wheelchair. We wouldn't have gone, but I'd been asked to judge the Chocolate Cakes for the WI a year earlier and I just cant resist a good chocolate cake, heaven. What a job, someone has to do it!
We only stayed half an hour and when we got back we all fell a sleep on the couch watching movies, what a lovely afternoon, we must have needed it.
We only stayed half an hour and when we got back we all fell a sleep on the couch watching movies, what a lovely afternoon, we must have needed it.
Thursday 25th August
Wow there's no better feeling than clean sheets on your own bed. What a fantastic night's sleep I've had even though I pretty stressed out with all the medication I'm in charge of! It's flipping me out.
I also made time for my first bath in months. I haven't had one since my operation in April.
Christopher got a big fat parcel from a lovely lady who lives in Australia, OMG it's packed with things for him. Christopher is made up, some people are so kind and generous. It makes me very tearful that some lady has shopped for all this lovely stuff and sent it too him, it's really cheered Christopher up and god knows he needs it, bless xx
I also made time for my first bath in months. I haven't had one since my operation in April.
Christopher got a big fat parcel from a lovely lady who lives in Australia, OMG it's packed with things for him. Christopher is made up, some people are so kind and generous. It makes me very tearful that some lady has shopped for all this lovely stuff and sent it too him, it's really cheered Christopher up and god knows he needs it, bless xx
Wednesday 24th August
Woohoo I'm the happiest woman alive right now! We're being discharged later on today when Christopher's drain comes out and all his medi's are ordered, yeah yeah yeah. Told Chris not to come until teatime because these things can take a while and I'm also not holding my breath, we've been this close to going home about 10 times over the last 6 weeks.
We'll it's half past five and we're on our way home lol xxxx
But first of all we have to get our priorities right. For the last 6 weeks me & Christopher have been planning our first meal at home as a family when he gets home. He's chosen, prawns and seafood, then Ribeye steak, homemade chunky chips and homemade sticky toffee pud and ice cream for afters. We also bought a mountain of chocolate too.
So as soon as we landed home i set straight to work cooking in my lovely kitchen for the first time in 6 weeks, bliss, my kind of heaven lol. Big Chris was amazed at the spread I put on for all of us in an hour. Yes it's certainly a good feeling being home with my lovely family, you cant beat it! Home is definitely where our heart is! xxxxx
We'll it's half past five and we're on our way home lol xxxx
But first of all we have to get our priorities right. For the last 6 weeks me & Christopher have been planning our first meal at home as a family when he gets home. He's chosen, prawns and seafood, then Ribeye steak, homemade chunky chips and homemade sticky toffee pud and ice cream for afters. We also bought a mountain of chocolate too.
So as soon as we landed home i set straight to work cooking in my lovely kitchen for the first time in 6 weeks, bliss, my kind of heaven lol. Big Chris was amazed at the spread I put on for all of us in an hour. Yes it's certainly a good feeling being home with my lovely family, you cant beat it! Home is definitely where our heart is! xxxxx
Monday 22nd August
A knot is forming in my tummy again. I have everything crossed for my little man today. He needs good news, please good news. Don't think we can take anymore, it's heartbreaking seeing him go through all this. After being Nil By Mouth most of the day, Christopher has finally gone back to theatre. Six times in six weeks is far too much.
christopher is back on the ward finally. The good news is they cleaned his infection out and it looked really good, so they didnt re-attach another suction pump instead they closed it and left a drain in it. Good news because thay can take that drain out on the ward, no need to go back to theatre AGAIN! Woohoo, happy days xx
christopher is back on the ward finally. The good news is they cleaned his infection out and it looked really good, so they didnt re-attach another suction pump instead they closed it and left a drain in it. Good news because thay can take that drain out on the ward, no need to go back to theatre AGAIN! Woohoo, happy days xx
Saturday 20th August
I really struggled walking into the hospital this morning! I'm feeling really low. When I get to the ward one of the nurses told me she was very shocked when she first saw the suction pump attached to his groin. Christopher then told her his sister thought the collection in the pump looked just like trifle, that made me laugh.
Today went down hill fast when ward round came to see Christopher. They explained that they were going to take Christopher back to theatre on Monday to clean his infection out and then attach another pump to it.
Christopher's not had a good day either, he's really low at the moment, it's just difficult being in here, for so long x
Today went down hill fast when ward round came to see Christopher. They explained that they were going to take Christopher back to theatre on Monday to clean his infection out and then attach another pump to it.
Christopher's not had a good day either, he's really low at the moment, it's just difficult being in here, for so long x
Thursday 18th August
Wow my little boy is a legend! Christopher is sleeping like baby, what a few days/weeks he's had.Christopher is now sleeping his latest surgery off. I've also had a great nights sleep too. Everything's good in the world!
Everyone has been amazing, we've had messages of love and support from as far as America and Australia. I don't know how I would of survived without fb & Twitter. It's kept us going at a very tough time. I read Christopher all the messages I get, to show him people everywhere are rooting for him and he has to get better for everyone. I've also received messages from my old friend Michael Winner lol oh and two of my director friends. I cant quite believe how Christopher has touched so many peoples hearts.
Everyone has been amazing, we've had messages of love and support from as far as America and Australia. I don't know how I would of survived without fb & Twitter. It's kept us going at a very tough time. I read Christopher all the messages I get, to show him people everywhere are rooting for him and he has to get better for everyone. I've also received messages from my old friend Michael Winner lol oh and two of my director friends. I cant quite believe how Christopher has touched so many peoples hearts.
Wednesday 17th August
After going through more test results, Christopher's consultant has told us that the infection in his groin isnt attached to his artery, my god that's the best news ever.
Christopher is now Nil By Mouth once again as he still has to have the infection removed. His surgeon has also told us that it's a three stage procedure over a few weeks and he'll be fitted with a suction pump thingy thats quite a new thing and it will keep sucking the infection out and also help to heal it. But all this can take sometime and it also means Christopher will also have to go to threatre another 3 times.
At that point I have a total melt down and run off the ward crying. I cant take anymore. It's all bad news for our little boy, all the time. Nothing has gone right. I was so worried yesterday after what they had told us and now it still seems awful for him because it's more surgery AGAIN :(.
Christopher has been so unlucky, to have this many complications. This latest one is very unusual and they've never attached one of these suction pumps onto a groin before.
It's really very hard to keep your head above water and try not to get upset in front of Christopher.
It's nearly 8pm, Christopher hasn't eaten all day and isn't very happy. He's just about to go to theatre. Wish this was all over!
Christopher is now Nil By Mouth once again as he still has to have the infection removed. His surgeon has also told us that it's a three stage procedure over a few weeks and he'll be fitted with a suction pump thingy thats quite a new thing and it will keep sucking the infection out and also help to heal it. But all this can take sometime and it also means Christopher will also have to go to threatre another 3 times.
At that point I have a total melt down and run off the ward crying. I cant take anymore. It's all bad news for our little boy, all the time. Nothing has gone right. I was so worried yesterday after what they had told us and now it still seems awful for him because it's more surgery AGAIN :(.
Christopher has been so unlucky, to have this many complications. This latest one is very unusual and they've never attached one of these suction pumps onto a groin before.
It's really very hard to keep your head above water and try not to get upset in front of Christopher.
It's nearly 8pm, Christopher hasn't eaten all day and isn't very happy. He's just about to go to theatre. Wish this was all over!
Tuesday 16th August
As it turned out this was the worst day of our lives. Ward round this morning told us we could go home Thursday, as long everything was ok. Good job I didn't hold my breath!
This afternoon we were sent for another scan on the lump in Christopher's groin. He even fell asleep having it done.
We came back to the ward and it went downhill from there, rapidly.
Once his surgeon had the results they came to talk to me and I was taken out of the room, so I could sense straight away this wasn't going to be good. They told me, Christopher's lump was the size of a golf ball and needed to be removed. They weren't sure it if was filled with puss or fluid. They then went on to explain that this would be done in theatre and because of where it was, it could be attached to one of his main arteries and even in theatre it was a potentially fatal procedure.
I was in total shock, this was the worst thing in the whole 6 weeks that we had to deal with.
How could I go back into Christopher's room in this state?? I was hysterical. Christopher's nurse told me to go and get a coffee and ring Dad up while she stayed by Christopher's bedside.
As I left the front entrance of the hospital and started to dial Chris, as I looked up I could see Chris & my girls walking towards me, smiling. I have never, ever been so pleased to see them in my life. Chris had no idea what I'd been told and when I explained it to him, he couldn't believe what I was saying. Christopher had come so far, this couldn't possibly be happening. Needless to say there wasn't much sleep for everyone that night.
This afternoon we were sent for another scan on the lump in Christopher's groin. He even fell asleep having it done.
We came back to the ward and it went downhill from there, rapidly.
Once his surgeon had the results they came to talk to me and I was taken out of the room, so I could sense straight away this wasn't going to be good. They told me, Christopher's lump was the size of a golf ball and needed to be removed. They weren't sure it if was filled with puss or fluid. They then went on to explain that this would be done in theatre and because of where it was, it could be attached to one of his main arteries and even in theatre it was a potentially fatal procedure.
I was in total shock, this was the worst thing in the whole 6 weeks that we had to deal with.
How could I go back into Christopher's room in this state?? I was hysterical. Christopher's nurse told me to go and get a coffee and ring Dad up while she stayed by Christopher's bedside.
As I left the front entrance of the hospital and started to dial Chris, as I looked up I could see Chris & my girls walking towards me, smiling. I have never, ever been so pleased to see them in my life. Chris had no idea what I'd been told and when I explained it to him, he couldn't believe what I was saying. Christopher had come so far, this couldn't possibly be happening. Needless to say there wasn't much sleep for everyone that night.
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