Sponsored cycle ride nearly here!

With only 3 days to go before we do our sponsored cycle ride of 60 miles we are eager and ready to go, we have been training hard for the last couple of months and sponsore money has been pouring in.

Our initial target of £600 has been smashed with a reckoning of approx £1500 to be raised!!.

We have had a few minor set backs with training as Paul "broke" his bike but he now has a new one so lets hope he behaves himself with this one.

Charlie is doing "ok" at the moment though we are still waiting for the MRI results so we are no closer to knowing when his next OHS is.

If you would like to sponsor us you can do so at http://www.justgiving.com/CharlieWoodheartappeal

You can also check out our "new look" website at www.charliewoodheartappeal.org.uk

Wish us luck for Sunday, we maybe eager and ready but a little luck will go a long way so cheer us on if you see us and make it more worth while by sponsoring us.

Steve

Disaster aproaching?

Well, Pauls' new bike is going back to the shop for repairs!, the forks are bent meaning the bike can not be ridden. Lets hope they can repair it or replace the bike ready for the 8th August or he will be running behind us....lol.

On a much better note, Charlie had his sats checked again today and they are 85%, thats 6% up from last week, the nurse is very pleased with him and is thinking that lasts weeks check was just a "blip". No results back yet from GOSH ref Charlie's MRI etc but it shouldn't be to long a wait now.

Don't forget to check out our "new look" website! http://www.charliewoodheartappeal.org.uk/ , there will be plenty of new pics of Charlie to view plus maybe just maybe some very exciting news coming sometime soon so keep checking back for updates.

Also, if you want to sponsor us for our 60 mile cycle ride you can do so by visiting our just giving website at www.justgiving.com/CharlieWoodheartappeal

Charlie's Sats

Charlie had his saturation levels checked yesterday (oxygen levels in his blood), they have dropped again to 79%, the nurese has said she will check them again next week rather than in 3 weeks time as usuall, she is concerned and says he looks very blue.

We know another ohs is coming soon but as his sats drop lower and lower the sooner the op is and it's not what we really wnat, would be good to have it now if we knew the outcome would be positive but as we don't later the better!. On a more positive note, Charlie has gained 10 oz!.

Steve

Fantastic day at Silverstone

We had a fab day at Silverstone collecting money for GOSH, it was hard work asking people to donate and the heat was HOT HOT HOT!.We started collecting at 8:30 till about 11:30 and had a short break then for another hour till lunch, we then watched the race just by the pit lane exit at the front. Just before the race finshed we headed to the eating areas and started collecting again till 4 pm.Most people were very happy to donate though there was the odd one or two that took offence but in total, Sarah and i collected £529!!, some woman even asked Sarah to lift her top and she would donate £100, sadly she didnt lol.We were very tired when we left, our legs were aching and Sarah's legs were burnt cos of the sun but it was well worth it as it was very rewarding to raise so much.One woman collected nearly £600 just by herself!!, we don't know how much was collected in total but it's A LOT!.It was also good to see some of the patients too, they got to go to the pits and meet some of the drivers, there was one little boy wearing a Mclaren drivers suit, his mum kept asking him to take it off as it was so hot but he said "no, people will think im a driver" lol.

Charlie's check-up

Hi everyone,

Well the check-up at GOSH went well yesterday and Charlie was a real star , he didn't complain once, he only cried once with the injection to put him under and he woke up 3 hours later without a problem in fact, he was eating 5 mins after waking up so it was great!.

We wont know the results of the MRI, ECHO and presuure test for a week or so but there were no surprises so thats good.

Charlie enjoyed riding on the underground for the first time though he was a little concerned as he didn't think there was anyone driving it!

Formular 1 and GOSH??

Is that right, are we going mad!??

No we aren't, Sarah and i have been invited to attend, along with others, to Silverstone FORMULAR 1 on the race day, 11th July. We will be walking the course and the grounds asking for donations.

It is sure to be a terrific day, you never know we may meet a few drivers!!.

The most important thing is that we raise as much money as possible so if you are lucky enough to be there, be sure to throw a few coins wrapped in purple coloured paper, yes you know the ones i mean, into the collection buckets.

Still training!!

Hi Everyone,

Yes we are still training, we have all missed one or two sessions but we are going further and out for longer and.....no more accidents!!.

Charlie has an appointment at GOSH on the 2 July, he will have an MRI and other intrusive tests to see how his heart is working exactly, with the results they will decide when his next open heart surgery will be so lets hope that there are no surprises in store and that the op won't be till next year....at least!!. We will be going down on the 1st july as he has to be at GOSH for 8 am so we will be staying in the parents accomodation the night before and hopfully home sometime on the 2nd.

We will be asking for sponsors for our bike ride very soon so if you want to donate online, look out for the justgiving web address coming very soon.

Steve

24 miles!!

Last Saturday we cycled 24 miles in about 1 1/2 hours! Cycling from Kirkley upto James Paget hospital then the back roads to Oulton Broad and back home and i was exhausted but then i had worked a 12 hour shift the night before. We were also out last night and cycled 15 miles around Lowestoft, its getting easier but our beds are still a welcoming site when we get home. We are out again Thursday night so if you see us "TOOT" your horn and give us a wave!!.

We now have our Great Ormond St T shirts and once they are printed with extra wording we will be easier to spot.

Charlie is doing well at the moment, today we recieved a letter from GOSH asking us to book his next cardiac check-up, this will be an MRI and other possible intrusive tests including a catheter so the nerves are starting to build already.

Wish us luck!!

OUCH, that hurt!!

Well we have been out training very hard over this last week or so, we have clocked up about 60 miles cycling in and around Lowesoft, Pakefield and even upto Bennecre along the beach which was quite hard going but it was fun.

Paul and I had an accident last Sunday, we were all travelling down a hill at high speed near the beach in Lowestoft when to kids got in the way causing us to swerve and skid, Paul ended up coming off and rolling on the ground to a stop and I eneded up half buried in a huge brambles bush and boy did it hurt!, Paul came away with a bruised leg and my right arm and leg are severely scratched but the main thing is that we were not seriously injured infact as we both came to a sudden stop we were both laughing, it was really quite funny, why i don't know but we just could'nt stop laughing.

We now have our GOSH t shirts so we will be easy to spot as we cycle around the coast so if you see us, TOOT your horn and give us a wave, we need the encouragement!! as legs and arms are aching.

Sponsor forms and a just giving website will be available soon so if you want to give to 2 great causes, be ready. OH, we may also have 2 more cyclists joining us too so stay tuned for further news and how we are coping with our training.

Charlie is doing fine at the moment, he had his mmr injections the other day and he screamed as the needle went in but he soon felt better after the nurse gave him a sweet and a sticker. When i told him i came off my bike he asked me " is your head broken daddy" lol., he doesn't like the doctors now either!

Thanks for reading, please feel free to comment

We are in training

Hi to everyone reading my blog!.

Well Sunday was our first day in training but what are we training for and what are we doing i hear you ask, well........ Sarah, my brother Paul and Mark my brother in law plus myself will be doing a sponsored cycle ride of 60 miles in aid of GREAT ORMOND STREET HOSPITAL and the ANTHONY NOLAN trust.

On Sunday we cycled 10 miles around Lowestoft, Pakefield and corton, this was our first time on a bike for a long long time and i can honestly tell you that our backsides were very sore afterwards but overall it was pretty good and rewarding too.

We will be training over the next few months in the hope we will be ready on the 8th August and the 60 miles so look out for us around Lowestoft and surrounding areas as we increase our milage and don't forget, if you see us "toot" your horn and give us a wave.

Wish us luck!
Steve

Charlie go's swimming

Hi to everyone,

We took Charlie swimming yesterday and for the first time he was warm and didn't go blue in the water and that was thanks to him wearing a warm belly wetsuit, for about 50 minutes he was trying to swim with his armbands on, he was quite happy to just float in the water by himself not scared at all....was really good fun for him and us, i think he will be a natural swimmer as he is really getting the hang of useing him arms and kicking his legs.
The warm belly wet suit is really worth its weight in gold, this is the first time he has worn it but before after about 15 mins in the water he would shiver and turn blue, now he is lovely and warm thanks to HEARTLINE.CO.UK who "give away" these suits to children with CHD so a big thank you to them, would highly recommend buying one, about £15 i think. Will try and post a pic of Charlie wearing his soon

Charlie's cardiac check-up results

Well Charlie had his appointment at 11:45 today at the James Paget Hospital with Dr Derreck from GOSH and it went quite well........................thankfully!.

Dr Derrecks first comment when we walked into the room was " doesn't Charlie look well" , that certainly put a smile on our faces. He then checked Charlie's sats which were 82% and he said he was happy with that, he then did an echo on Charlie's heart and he was pleased with what he could see although there was a little bad news. The conduit from Charlie's pulmalary atery was leaking and showing signs of not being "big enough", Dr Derreck said it wasn't a huge concern but it will need replacing which is a problem for them as it will be tricky, as there is no urgency for this at the moment it can wait till after further tests are done.

After the echo Dr Derreck said that Charlie is too small for the next stage of surgery (TCPC), his heart is ready but his body is to small to cope although if necessary, they will do it.

Charlie will be seen at GOSH in 2 or so months time for a series of tests including an MRI and possibly invasive tests too to find out exactly how his heart is working so they can decide when further surgery will be best .

So in all its good news, there is no definate surgery this year but, there is another "leak" and they say they didn't expect to see it but are not surprised.

Dr Derreck said that Charlie's heart is quite unique and that his uniqness is what they call " N 1" (one in a million).

Charlie was really good during the check-up but he did cry during the echo asking it to be stopped.....poor little bugger.

Thanks for reading, please feel free to comment.

Charlie's development check-up

Charlie was seen by the doctor at JPH on Thursday for a development check up, we were asked how he is coping, if we had any concerns and that was it, all for a 1 1/2 hour trip although he was measured and he is now 89 cm tall!!, bottom centile for his age but never mind, least he is growing, 2 cm in 7 months!!. No concerns were made

Next check-up in 6 months, Cardiac check-up on Tuesday 11th, WISH CHARLIE LUCK!!

Charlie's Check ups

Hi to everyone reading my blogg, please feel free to comment and pass my blog onto others.

Just found out yesterday that Charlie has another check up on Thursday at the JPH to see how his development is going, there is no worries with it its just something they need to do every 6 months and if im honest its a waste of time becouse all they do is ask us questions, ask if we have any concerns and thats it, 2 hours at the hospital for a 10 minute meeting! but never mind, its the cardiac check up im worrying about on the 11th, wish Charlie luck!.

I've not seen Charlie for nearly 4 days now (court access) but im seeing him tonight and he'l be sleeping over too so im looking forward to that, can't wait!.

Steve

Charlie sleeping to much?

Charlie slept for nearly 3 hours yesterday afternoon which is very unusual for him, from 4:15 till 7pm then slept through the night from 9:45 to 7 am, is this cos he is needing his op? not a good sign!!

Steve

Charlie's health today

Charlie's saturation (sats) levels (oxygen in his blood) are currently 82% (with a healthy heart the sats should be about 99%). This means he is more tired than usual and is less active than a "normal" child, he also has a blue tinge to his top lip and finger nails, this is fairly normal for a heart child.

Charlie's weight is a concern right now as he is only 25lb 2 0z, he is not quite 3 and a half yet! He is on a high calorie milk called peadursure plus 300 calories per 200 ml and also a high calorie supplement called Calogen at 15 calories per 1 ml plus vitamin supplements too.
The consultants at Great Ormond Street Hospital would idealy like Charlie to weigh alot more but as he is showing signs of needing further surgery, they may have to carry out surgery before he weighs much more.

Charlie will be seen by cardiac consultants from GOSH at James Paget Hospital on the 11th May where they will carry out an Echo (very similar to a scan an expecting mother has) on his heart, they will then decide what will happen next with regards to his next surgery.