Thursday 31 December 2009

Oh dear , it’s been far too long since I updated Corwin’s blog. After our holiday to the Isle of Wight Corwin settled back into Preschool with confidence. He now goes for four morning sessions of 2.5 hours with full one to one support. He had his end of term report recently (!) which says ‘he is really growing in confidence’ and ‘is starting to form friendships’. He also seems to have a talent for jigsaws as his concentration is excellent. I am told he is a well behaved boy at preschool.

Corwin has generally been well but did have 6 days in hospital with pneumonia just before Christmas. Because of his heart condition the chest infection caused his oxygen levels to dip to only 50% so he needed several days on oxygen, iv fluids and iv antibiotics. He coped very well with everything and I was surprised how well behaved he was. He was very distressed at times for example when they had to take blood or put his canular in ( it came out twice) but he did not fight any of the doctors and did not pull at any of the many wires and tubes. We missed his cardiology appointment while he was in so we see Glenfield on January 11th to discuss his next stage of surgery. Corwin also missed his first ever nativity play , he was going to be a King.

Thankfully Corwin came home a week before Christmas so we were able to get things organised and enjoy Christmas day at home. The boys were thoroughly spoiled as usual, Corwin even had gifts left to open on Boxing Day! It was a quiet Christmas day as we had lunch at my parents then my parents joined us for tea at ours. The boys behaved so well! They carefully opened presents , played nicely and ate plenty. We even had a white Christmas here so took the boys outside to make a snowman! Corwin’s toys included a giant car garage, duplo house, Mr Potato Head, various Thomas the tank Engine gifts and much more. Rowan had a rocking horse, duplo zoo, In the Night Garden gifts etc.

We don’t have anything planned to see in the new year. We have some sparklers left over from Bonfire Night so may take the boys outside with them before bed. 2010 is set to be a stressful year as Corwin is likely to have three operations. Lets hope 2010 goes as smoothly as possible.

Happy New Year!

Abi x

Monday 12 October 2009

























I realised it has been quite some time since I last updated Corwin’s Blog!
Corwin is doing very well. He has new glasses and orthopaedic boots, and has started Speech and Language group sessions. He has started back at preschool doing four mornings a week and has settled in again very quickly. He still has one to one support and his confidence has grown so much! It doesn’t seem to tire him out that much which is fantastic and shows his heart condition is not worsening. We have a cardiac appointment in December.
We had a busy summer as we had work done on our house which was a little stressful! Corwin enjoyed watching the carpenter , may have to get him a childrens tool kit for Christmas!
We went away on holiday in September to the Isle of Wight. A friend of mine lives there so it was great to meet up. We were very lucky with the weather and were able to eat outside each day and enjoy plenty of visits to the beach. Corwin even managed to go in the outdoor heated pool twice, which he loved but he went blue and breathless after a short time.
My brother ran at the Little Hearts Matter charity run at Shugborough Hall yesterday, raising over £600 for them! Excellent, well done Adam! He wore a tshirt with ‘Running for Corwin Meynell’ on it as Corwin will never be able to run long distance.
Not much else to report, Corwin’s little brother has started walking – it was only 9 months ago that Corwin took his first steps! It is lovely seeing them play more and more and trying to talk to each other!
I have put some photos of our holiday above.
x




Thursday 17 September 2009


Here is a 'Wordle' for Corwin's blog - most used significant words, quite interesting!

abi x

Wednesday 24 June 2009

Saturday 20 June 2009

I thought it was about time for an update!

Corwin had his cardiac check on Monday. We were a little anxious to have him checked as his Oxygen SATs have been dipping to 67. However the appointment went well and the doctor said they are not too concerned that he is dipping to around 70 and they dont want to do his next is until he is bigger (he is 13.5kg). His Sats are around 80 at rest - phew! His heart function is the same as at his last appointment so they are happy to leave him another 6 months and not put him forward for a pre op catheter just yet. They said at the next appointment they may put him on list for one. So we can relax for 6 months and not worry too much!

I had a meeting the day after his heart check with his Special Needs Inclusion Teacher ( teacher who comes to the house once a week to work with him), his preschool leader and his health visitor. The meeting was to set targets for Corwin in an IEP ( Individual Education Plan). The meeting went well. His preschool have assessed him at aged 16 - 26 months ( he is 37 months) but say he is making progress. His confidence has really grown and he will go to preschool four mornings a week from September. His language is the main area of concern as he is still not using any real words. He uses a limited number of sounds - just 'b' and 'd' and all the vowels. He uses lots of expression and emotion when he babbles and is very sociable considering he can't say words! He is going to be sssessed for statemening which will hopefully be in place for when he starts school so he gets the support he needs. The HV is referring him for hearing test as it's been two years since he has one. His eyesight seems to be getting worse and preschool have noticed this too. We see a consultant next month.

Corwin has been such a happy little boy lately, full of fun! He and Rowan interact more and more - they like to copy each others noises, chase each other, and generally make each other laugh. So cute!

We are off to a birthday party at a farm tomorrow and it is also father's day , so I will try to remember to take photos and post them here.

abi x

Monday 1 June 2009

HAPPY 3rd BIRTHDAY CORWIN!

Sorry I have not updated Corwin's blog for a while!
Corwin turned three on Saturday! We had a lovely party for him at our nearby Country Park. I hired a room and put out craft activities and Corwin's Grandpa did some face painting. The children had little picnic boxes for party food, I gave out bags of bread to go to the lake to feed the ducks, then to finish the children enjoyed playing on the small playground. The weather was just beautiful!
Corwin was thoroughly spoiled once again with lots of gifts, mainly Thomas the Tank Engine! He was quite calm opening them and fascinated by the gifts rather than excited. I had been singing 'Happy Birthday' to him for a few weeks followed by teaching him how to blow, so he confidently blew out his candles - proudest moment ever!
I have made a slide show of his party, what a great day!

Thursday 19 February 2009

HAPPY HEART DAY!



It's two years today since Corwin's second heart surgery. It was a horrible day with him in surgery for 8 hours, but it is nice to wish him a Happy Heart Day as it is lovely to see him now and see how far he has come and without the surgery he would not be here today, so HAPPY HEART DAY MY GORGEOUS BOY!!


The second photo was taken of him about 4 days after his operation in intensive care. We did not take photos of him before this as he looked so terrible on life support. In this photo he is sat up in a special physio seat as he had a chest infection so need to be upright. He had a lot of fluid retention post op and could not open his eyes for over a week they were so puffy. Under the blanket is a sea of wires. He is wearing a bobble hat as he was cold to touch - I had to take a photo of him in it!

But look at him today...!

abi x

Wednesday 18 February 2009

Just a quick update. Corwin had an appointment with his neurologist yesterday and all went very well. She is very pleased with his progress and was very happy to see him walking! He was delightful during the appointment as he wasn't prodded and poked too much and had some lovely toys to play with. She is happy to leave it another year before seeing him again!
Rowan has been poorly for over a week now. He eventually came out in chickenpox and was VERY grumpy with them. He came out in far more than Corwin, 85 on his face alone. He wasn't sleeping or eating well. After a week of still not being well with some very sore spots his voice started to sound 'poorly' , his eating got worse and then I noticed lumps on his neck and behind his ear. I took him to the doctors and he is now on a course of antibiotics. He is getting slowly better, but still has a sore voice, lumps and is hard to keep occupied. His spots are looking like they are finally healing. They had become infected which is why his glands came up. Corwin has been a very good boy all week while Rowan has been taking up a lot of my time.

Saturday 14 February 2009

Happy Valentines and CHD Awareness Day!

You will need to pause the playlist player at the bottom of the page to watch this or listen to two tunes at the same time! There are some lovely songs on the playlist player you can listen to afterwards!

abi x


Wednesday 4 February 2009

Fun in the Snow!


We have had quite a bit of snow here! Corwin is not a huge fan of snow, he would not hold it and was not able to walk in it as he was just far too wobbly even when holding our hands! We did manage to make him a snowman though that he seemed interested in!

He has had a settled two days at preschool. There are always tears when saying 'Bye bye' to me, but he sat nicely through register yesterday and has been a bit more sociable and content. They say he is a very good little helper when it comes to tidying up time - something I have taught him well!

Not much else to report really. Corwin has a new baby boy cousin (his 8th boy cousin!) called Toby, so congratulations Vicky and Matthew! He is yet to meet him because of his Chickenpox. Rowan is showing no signs of catching it, so touch wood he can get it when he is a little older and able to cope better.

abi x

Wednesday 28 January 2009

preschool , police and chickenpox!

Hello, I thought it was time for an update on how Corwin was doing!
Last week he had two full mornings at Preschool. He was extremely clingy with me and grumpy both afternoons. He continued to be in a VERY bad mood all week, crying when I left the room, wanting to sit on my knee ALL the time, sleeping in our bed at night etc. He didn't seem unwell with a temperature so I put it down to starting preschool. A visit to the hospital for a specialist eye test did not help matters as drops were put into his eyes to dilate his pupils - he was not impressed! He is not great with doctors, unsurprisingly, but a packet of skips meant he sat still long enough to be examined. Why I haven't thought about taking crisps to his heart appointments to keep him still I don’t know! Anyway, results were that he is short sighted and needs glasses which we got on Saturday. He looks very cute in them, but is refusing to wear them unless I put his favourite TV programs on!
On Monday morning he had his first ever school (well preschool) trip! I went along as a helper, to the police station. The station is on the same road as the preschool so the children walked there but I had Corwin strapped in his buggy, not only because he has only just started walking, but walking distance can be difficult for heart children with low oxygen levels. They don’t tolerate exercise very well and I want Corwin's one and only to pump to last quite some time so the less it is 'pushed' the better. When we were inside I took him out of the buggy and he managed about 5-10 minutes on his feet holding my hand until he became too tired and I had to carry him. The other children had managed 90 minutes on their feet so it really showed me how his condition affects him.
After the police trip I got Corwin ready for a friend's party when I noticed SPOTS!! He had played with a child with chickenpox two weeks previous as I wanted him to catch them! It is good that children needing further heart surgery have had chickenpox as heart surgery and chickenpox can be a dangerous combination. I rang the Cardiac Liason Nurse to see if I needed to adjust his medicines. Having spoken to a doctor she rang to tell me I needed to stop his aspirin IF he did have chickenpox and to get him seen to check it was. So instead of the party it was trip to the doctors. He was seen by two doctors who wouldn’t say if it was or wasn't Chickenpox but to assume it is if it spreads quickly. He woke up the next morning with spots and even more today, poor thing. So I have stopped his aspirin for 7-10 days. No wonder he was so grumpy last week, he was obviously feeling unwell with the chickenpox on the way. He is much better in himself now, just a little itchy.

Fingers crossed the spots clear soon and if Rowan catches it that he copes well being so young.

Here is a photo of Corwin in his glasses. It's not great as I had to take it quickly before he took them off again!

abi x

Thursday 22 January 2009

Awareness for half a heart babies

CHD (Congenital Heart Defects) is the number one killer in babies and children, it is more fatal than cancer. As there is still no national awareness in the UK, the majority of people do not seem to know an awful lot about chd, many people are totally unaware that children and the young can have problems with their hearts, its still mainly associated with something only the elderly suffer from.CHD is an anomaly of the heart that is present at birth. CHD’s cause one or more portions of the heart to develop abnormally.There is no known cause for CHD.CHD is the number 1 birth defect and is the leading cause of birth-defect related death. BUT it is the least publisised of all the known birth defects.CHD strikes without regard to economic level, ethnic origin, sex, geographic location or religious beliefs. Aprox.16,000 infants are born with CHD each year in the U.K yet newborns are still not screened for CHD’s.Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly, too many are not diagnosed until after death.There are 1.2 million children and adults with CHD alive today. CHD affects not only patients, but also their entire families too.Please help us to raise awareness by signing the petition (link below) If you are still in any doubt whether or not this is a worthy cause, then please watch the video on the link, I think you will agree these children all deserve a chance .....


Awareness for half a heart babies

Wednesday 14 January 2009

First day at Preschool!



Corwin had his first day at preschool yesterday! I cant believe he is growing up so fast! I have been with him to a few sessions so that he could get used to the setting, but yesterday was the first time I had left there. He has a lovely one to one learning support assistant to help him with his mobility ( he is a wobbly walker, cant get on and off chairs etc)and to help with his language and learning in general. When I went to collect him she said he kept going to the door to look for me and moaning a little but he was easily distracted with various activities. He only did a morning session and he will do two mornings a week. His learning support assistant is going to keep a diary/contact book so she can note his progress and activities each session.
See how grown up he looks!! A lovely proud mummy moment and another huge milestone ticked off!
abi x

Thursday 1 January 2009

Happy New year!!




Happy New year to everyone!

Corwin gave us the best present at Christmas and started walking!! After nearly 18 months of physio, a walking frame and lots of falls, at 2 years and 7 months he is finally toddling round our house and we are very proud parents!

I took the video footage below of him today. He looked so cute toddling round in his chef outfit about to cook a crumble with his daddy! Unfortunately I held the camera the wrong way up and I cannot rotate it so this may send you a bit dizzy!

Here are some photos the correct way up!