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
Tuesday, 25 May 2010
Monday, 17 May 2010
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
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
Tuesday, 11 May 2010
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.
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.
Saturday, 8 May 2010
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!!
Next check-up in 6 months, Cardiac check-up on Tuesday 11th, WISH CHARLIE LUCK!!
Tuesday, 4 May 2010
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
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
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