Corwin Thomas Meynell

2010-03-14T13:38:00.000-07:00

2010-03-14T13:26:00.000-07:00

Had a lovely mother's day! Boys spoiled me ( well Tom did) with plenty of gifts after my breakfast in bed. Smellies, keyring, notebook, pen, mirror. Both boys were utterly delightful all day. Rowan is growing fast and is not needing an afternoon sleep. He is a strongly independent , spirited little boy! Corwin behaved beautifully, he has such a calm temperament, such a little darling.

Above is a photo of my gorgeous boys ( Corwin on left, Rowan on right).

abi x

2010-02-19T11:46:00.001-08:00

2010-02-19T11:43:00.000-08:00

HAPPY HEART DAY CORWIN XXX

It is three years today since Corwin's second heart surgery.

Above is a photo of him taken today.

abi x

2010-01-12T07:45:00.001-08:00

2010-01-12T07:40:00.001-08:00

Hello! Another update to share some photos with you from our holiday to Centre Parcs. It was lovely to get away after Christmas and it was beautiful in the forest with so much snow. Corwin loved the swimming pool, especially the small toddler slides. I bought him a special wet suit to keep him warm which helped , but he started shivering in the pool after about five minutes. Rowan was quite difficult all week , the terrible twos have well and truly hit!

We had a cardiac appointment yesterday. Corwin’s heart is stable with oxygen levels staying at 82%, his valve leak is no worse and blood flow around his complicated little heart is ok. His cardiologist wants to see us in four months time with view to putting him on a waiting list for a heart catheter ( a good look at his heart under general anaesthetic via a tube inserted into his leg or neck), after which we will know what the plan is for his next open heart surgery, called a Fontan. His cardiologist said that his Fontan surgery will be riskier than most due to his complex heart condition ( he has to have a few other tweaks and his valve leak means that his heart is less likely to cope). Because of the higher risk he wants Corwin to gain more weight but does not want to leave it too long. I think his surgery will go ahead towards the end of the summer, but we will know more in May. In the meantime I am feeding Corwin lots of high calorie snacks to get his weight up.

This week we received a date for a non heart related surgery – 23rd March. Hopefully this will require just one or two nights in hospital , we will know more at the pre op appointment on the 5th March. Hopefully his eyes will be examined during this operation while is under general anaesthetic.

I will keep his blog updated!

Abi x

2009-12-31T04:10:00.001-08:00

2009-12-31T04:08:00.000-08:00

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

2009-10-12T03:11:00.000-07:00

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

2009-09-17T11:07:00.001-07:00

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

abi x

Adam Partridge is fundraising for Little Hearts Matter - JustGiving

2009-08-20T13:09:00.001-07:00

Adam Partridge is fundraising for Little Hearts Matter - JustGiving

Posted using ShareThis

2009-06-24T04:41:00.001-07:00

2009-06-20T12:42:00.000-07:00

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

2009-06-01T02:50:00.001-07:00

HAPPY 3rd BIRTHDAY CORWIN!

2009-06-01T02:37:00.001-07:00

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!

HAPPY HEART DAY!

2009-02-19T02:31:00.000-08:00

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

2009-02-18T05:17:00.000-08:00

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.

Happy Valentines and CHD Awareness Day!

2009-02-14T03:47:00.000-08:00

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

Make an on-line slideshow at www.OneTrueMedia.com

Fun in the Snow!

2009-02-04T03:19:00.000-08:00

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

preschool , police and chickenpox!

2009-01-28T13:50:00.000-08:00

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

2009-01-28T13:25:00.000-08:00

Awareness for half a heart babies

2009-01-22T04:25:00.000-08:00

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

First day at Preschool!

2009-01-14T03:30:00.000-08:00

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

Happy New year!!

2009-01-01T14:15:00.000-08:00

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!

2009-01-01T14:14:00.001-08:00

2008-12-26T13:53:00.001-08:00

2008-12-26T13:18:00.000-08:00

Corwin and Rowan had a great day yesterday! I wasn't sure how Corwin would be as he is too young to understand what Christmas is all about, but he was super excited to open his sack full of presents and understood straight away that each was to contain a gift! He had so many..lots of Peppa Pig toys, books, and Go Diego Go toys. He kept saying 'wow!' (his new word) and shrieking 'Peppa' and Dodo (Diego). Rowan hadn't a clue what was going on but enjoyed all the cuddles from relatives and the wrapping paper!

Here are some photos!

Happy Christmas!

abi x

Happy Christmas!!!

2008-12-01T04:30:00.000-08:00

Send your own ElfYourself eCards

2008-11-29T13:31:00.000-08:00

I am posting a link below to a petition for Media Awareness for CHD. This includes the UK. Please sign it if you can spare a minute. You will need to copy and paste the link. Please pass on the link to anyone you feel may support this.Thank you.

http://www.gopetition.com/petitions/media-awareness-for-chd/sign.html

2008-11-29T07:04:00.001-08:00

2008-11-18T04:48:00.000-08:00

Hello. Here is a photo of my purr..fect little man all dressed up for a fancy dress party! He looked so cute!

2008-11-06T07:29:00.000-08:00

Just another small update and a chance to post some bonfire night photos! They are not great I am afraid. We just had a few fireworks at home and Corwin loved them! He was mesmerised for over half an hour! He looked so cute with his wellies and fleece duffel coat over his PJs!
It is not long now until Corwin starts Preschool - January! He will have one to one support to help him with his mobility and his language mainly. In a couple of weeks I am meeting with his Preschool leader, his support assistant and his Special needs inclusion teacher at his preschool setting. He has become very clingy of late so I worry that the transition to preschool may not be easy! He will only go two mornings a week with view to increasing that after the summer - then he will have just one year before he starts school!
He is doing so well lately with his language, he repeats the initial sounds of some words really well, like 'd' for dog and says 'pee' for please!
Rowan is doing well also and is nearly 7 months! He is showing no signs of crawling as he has no interest in looking at the world from his tummy - he just rolls straight off and happily kicks on his back. He is just about sitting!
I will update again soon,
Abi x

Brotherly love!

2008-10-26T14:25:00.000-07:00

Just wanted to share these photos. Corwin is very good with Rowan and Rowan smiles and laughs at Corwin lots! It is lovely seeing them start to interact.

Corwin's Clinic Appointment

2008-10-06T07:20:00.000-07:00

Corwin had a cardiac clinic appointment today and it went very well. He had the usual Sats check ( Oxygen levels in blood), blood pressure, weight check...then ECG and the Heart Echo. He cried like crazy for each and every one of these as he was taken from one room to the next. The final room was to speak with a registrar and even though the room had cosy table and chairs only he screamed through the entire consultation. I was hoping after 6 months since the last appointment he would be fine , but he was worse than ever before. He did enjoy walking around the waiting and play area with his frame though and he got lots of attention from the staff! He is such a show off! The registrar spoke to our consultant and gave us feed back from all his tests ( we usually speak with the consultant but were happy he had seen the echo and results). The registrar said Corwin was stable and that there was no plan to do anything at the moment.His SATs were 80%. We will see them in 9 months (a record length of time) and maybe a cardiac catheter will be considered then to go in and take a good look at his heart. For those who don't know , a catheter is procedure where a fine tube is threaded into the heart , for children under a General Anesthetic. It is a bit like the key hole of cardiac surgery. For Corwin it will be diagnostic only but sometimes catheters are used to close small holes, open holes , stent arteries etc. Normally they would enter the catheter through the top of the leg , but this time I am guessing they will enter Corwin through his neck. It is a straight forward procedure.

Anyway, things are stable, so we can relax for 9 months!

Well done Corwin!

abi x

2008-09-22T12:59:00.000-07:00

Just had to share these photos of Corwin tucking in to a chocolate lolly! A colleague of Tom's visited Corwen in Wales! He had no problem finishing it all off!

Corwin also went to his cousin's fancy dress birthday party as Postman Pat and so we 'dressed' his walking frame as the van!

abi x

2008-09-16T09:42:00.000-07:00

Corwin had an appointment with his general paediatrician yesterday to check on his general health and development - just one of the four clinics Corwin is under! The Doctor basically oversees all of Corwin's treatment for everything. His cardiologist only really looks at his heart whereas his paediatrician looks at 'Corwin'. He seemed pleased that Corwin is making steady progress in all areas and listed all the 'help' Corwin is having - Physio Therapy, Speech and Language Therapy and a Special Needs Teacher from the Early Years team who spends over an hour a week with Corwin at home. It would be so difficult for me to go to back to work with all the appointments we have! Corwin is still not walking , now 2 years 4 months (see chart at the bottom of this page!) but is using his walking frame with ease. He is not saying any words but plenty of sounds and is definitely communicating but in his own little language with a lovely little sense of humour! We like to look at what he can do rather than cant. He weighs about 28lb / 13kg and is 82 cm tall.
His little brother Rowan is growing fast and Corwin showers him with kisses and gives toys to him - he is a very caring, affectionate big brother.

I just love the photo of them above. They both look so cute ready for bed. Corwin looks young for his age so it is hard to believe there is two years between them from this photo!

abi x

2008-08-25T04:24:00.000-07:00

2008-08-25T04:18:00.000-07:00

Summer Break in Norfolk

2008-08-25T02:25:00.000-07:00

Hello! We took the boys for a mini break to Norfolk. The weather was kind to us considering what a shocking summer we have had , yet again! We only went for two nights but managed to squeeze in two swims in the hotel pool, two visits to Great Grandma, a long play at 'Play Barn' farm and an afternoon at the beach. Corwin had lots of fun on the tractors and he enjoyed the sand but kept eating it! He loved holding our hands and paddling in the sea. He was absolutely exhausted after just three days. He managed just short naps in the car and missed his long afternoon sleeps and it shows he really needs them still to 're-fuel'. He looked quite a poorly boy on the way home and now has a cough and runny nose :( Am sure a few days with some long sleeps will have him back to his self soon.

Above are some photos!

abi x

2008-07-24T14:14:00.001-07:00

Two Years on...

2008-07-24T14:00:00.000-07:00

It was two years ago today that Corwin had his first heart surgery.He has come so far.
Well done my little man! xxx
The slide show above starts from two years ago...to today.

abi x

2008-07-15T05:30:00.000-07:00

At Last some nice weather so Corwin was able to use his walker in the garden! He loved kicking his Peppa Pig ball around , something he wouldn't be doing on his own without his walker. It was a lovely 'proud Mummy and Daddy' moment that I had to share!

abi x

2008-07-10T06:18:00.000-07:00

I have nothing much to report really. Corwin is doing well with his walking frame, although the novelty has worn off and so he is ignoring it and crawling lot. I don't want to force it on him so leave it round the house and gently encourage him to stand up to it himself.

He is taking to Rowan more and more. He will shake toys over him and give him his dummy. He does get a little jealous if visitors hold Rowan , or if I take photos of Rowan!

The photos are of Corwin and Rowan. They are looking more and more alike, but not ever so much. It is fun to dig out the photos of Corwin and compare.

The first of each two is Corwin. He is two months older than Rowan in the smiley photo , but it is the only open mouthed smile I can find of him!

abi x

2008-06-30T12:57:00.000-07:00

Just wanted to share some nice news that Corwin is walking really well with a new frame. He tried it for the first time with physio today and after about 15 mins he was walking everwhere with it. He was so excited! He is really ready to be independent and is becoming very strong minded. He can pick it up slightly to turn it round, infact he is a bit too good that he is scaring me as he goes far too fast and there are plenty of things for him to knock into in my house! I cant slow him down. There is also a tiny step onto laminate flooring in his playroom , but he slows down and carefully steps up or down it (see photo)...one day he might forget He did go too fast with it and banged into the patio doors...however the second time he remembered and stopped way ahead of the doors! eeek he is going to keep me running round after him now!

Only downside was that it absolutely exhausted him even though he was not on it long. I am unsure how much to let him use it as he does not know his limits yet. He went to bed a very tired, grumpy, crying boy.

abi x

Fundraising event

2008-06-27T11:50:00.000-07:00

On Monday my family held a fundraising event for 'Little Hearts Matter'. We held a 'not so serious' wine tasting evening, at the prestigious Stapleford Hall, including a 4 course meal , raffle and quiz. We raised a fantastic £5145 ! You can click on the link to the right to learn more about Little Hearts Matter', a charity that supports families of children with single ventricle conditions. We have made lots of friends through the charity, met lots of children that have given us hope for the future and learned lots about living with a child with such a complex condition. We know the charity will continue to be a support as Corwin has further surgery , starts school, grows into his teenage years and hopefully beyond. The charity is a great support particularly for women who are pregnant and given the diagnosis and need to find answers and support quickly.

Thank you to all my family, especially Dad for your efforts, it was a great evening!

Photos above from top - Corwin's Granny speaking, Tom and I, Corwin's Grandpa speaking, Corwin's Grandad drinking!, Corwin's uncle Adam handing out one of the many wines and Tom and Corwin's Nanna.

abi x

Happy Second Birthday Corwin!

2008-06-05T01:41:00.000-07:00

It was Corwin's birthday on Friday! He had a small party involving party food at a village hall then moving to his Granny and Grandpas' garden for outdoor play! We were very lucky with the weather! Granny and Grandpa's motorised tractor was a big hit with the children, with only one child becoming run over! Corwin's favourite presents included a sandpit, swing, water table, train set and some peppa pig toys!

Cant believe he is 2 already! He is looking quite a grown up boy despite not walking or talking yet. He is eating well, sleeping well and is an absolute joy to be around - lovely company!.

Happy birthday my special little man!

abi x

2008-05-26T03:48:00.000-07:00

I just wanted to add this lovely photo my brother took of Corwin kissing his baby brother Rowan! Corwin has been very good with Rowan and has not seemed jealous at all. He kisses him often and looks very concerned when he cries.

Corwin recovered from his gastroenteritis , after which myself and Tom got it! Corwin also had a mystery rash and needed two visits to the doctors, some pirotin and ointment, but he is fully recovered now.

I cant believe Corwin will be two on Friday! I will be posting lots of photos soon!

abi x

Introducing Corwin's little brother!!

2008-04-24T12:28:00.000-07:00

Corwin's little brother, Rowan Everard Meynell, was born on April 18th, 5 weeks early, weighing 5lb 14oz. Was a surprise to us all! I went into labour naturally but had to have an emergency c section as he was breech and showing signs of distress. We had been told to expect a c section, but not to soon!

He is doing very well!

Corwin is poorly though with gastroenteritis which has really knocked him out. He has paid little attention to his little brother, so hard to know what he thinks until he is well again.

I will have to post some photos of Corwin and Rowan together soon.

abi x

Cardiac Clinic Appointment

2008-04-08T04:25:00.001-07:00

We had a cardiac Clinic appointment yesterday and all went very well. Corwin's heart is still the same , no worse with the valve leak possibly slightly improved. They seemed very pleased and are happy to leave it another 6 months before seeing him again which is the longest they have left him! We dont have any appointments until we see his urologist in August, just physio and a visit from an Early Years team at home. We should have a nice break from hospitals just in time for us to concentrate on family life with a new little addition next month!

abi x

HAPPY EASTER!

2008-03-21T12:35:00.000-07:00

Happy Easter!

love from Corwin

xxx

Corwin's first word!

2008-03-21T05:44:00.000-07:00

Corwin is now saying his first word! He has been babbling sounds for a while but never seemed to attach a sound to anything to create a word until now.

His first word is Peppa Pig! - A children's TV Program. He says P-P-P and points at the TV, or fetches us one of his many Peppa Pig books and says P-P-P! He seems very pleased with himself for saying it!

I managed to film him saying it to his Daddy.

Abi x

Great Grandad

2008-03-17T15:24:00.000-07:00

Corwin's Great Grandad passed away this week. He loved his computer and would often read this blog to catch up on Corwin's progress so I wanted to add this photo for him.

Abi x

Little we knew that morning that God was going to call your name,

In life we loved you dearly,in death we do the same.

It broke our hearts to lose you, you did not go alone.

For part of us went with you, the day God called you home.

You left us peaceful memories, your love is still our guide,

And though we cannot see you, you are always at our side.

Our family chain is broken, and nothing seems the same,

But as God calls us one by one, the chain will link again.

Mother's Day!

2008-03-02T12:27:00.000-08:00

It's mother's Day today and I have been thoroughly spoiled by my little man!...gifts included flowers, smellies, a bag..plus Corwin made some ginger bread 'mummies' with his Daddy and I have a hand print set to do with him - we didn't have time today!

Lunch was spent with Tom's family and Corwin proudly showed off a lovely new outfit and his new orthopaedic boots! We later went to Granny's house and Corwin walked up and down her corridor holding my hands without needing to stop! We got his special boots from the hospital on Friday - Corwin's physio referred us. When Corwin is cruising the sofa he walks slightly on the inside of his feet with his ankles 'caving' inwards. We have been told that this is just because his feet are so small and will correct itself. In the meantime he has these made to measure boots to support his ankles and to help him learn to walk. Already I can see that they position his legs better and he is more stable on his feet, so I am hoping he will learn to walk this summer. They look gorgeous and not like orthopaedic boots at all.

Corwin is wearing his boots in the photo above! He looked such a grown up handsome little boy today.

Will update again soon.

Abi x

One year on!!

2008-02-19T05:13:00.000-08:00

Wanted to post as it is a year today since Corwin had his Glenn operation. Happy first 'second heart day' Corwin! The first anniversary of his second heart surgery.

He is now 21 months and has become very active the last couple of months. He pulls to stand against everything he can, crawling fast and cruising the sofas and his little kitchen nicely. He has a few hurdles to overcome yet, but I will stick with the positives! He is a fanastic little boy, SATs around 80, looking healthy, he doesn't go blue, and with one long 2-3 hour nap in the day he is able to stay active and rarely gets out of breath.

I took the photo of him above today, one year on. He would not stay still long enough for a great shot, this is the best I could do!

abi x

Here's a little story to share...

"Once there were three angels were busily working in the miracle factory. It was their job to wrap up all the little miracles and send them on theirway. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons, stamped them with a delivery date and away they would go to the parents who eagerly awaited their arrival. Things usually ranpretty smoothly.

One day, however, down the conveyer belt came a little miracle that madethe angels pause.

"Oh my," said the first angel "this one's uhm...well...different."

"Yes, he is unique" said the second angel.

"Well I think he is quite special," said the first angel "but I don't think he will quite fit our standard wrapping procedures."

The second angel added, "And we know he's special, but will everyone else?""Not a problem," said the third angel "obviously a special miracle deservesextra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special he is."What a wonderful idea!" replied the others. So they searched the shelvesHigh and low for their finest paper, and their most delicate ribbons.

When they were done, they stood back and admired their work.

"Beautiful!"

"Now for our blessings," said the third angel "for it is time for him to go."

I will bless him with innocence and happiness,"

"And I will bless him with strength to face the many challenges thatlie ahead”

"And I will bless him with an inner beauty that will shine on all who look upon him" Before sending him off the third angel, who was very wise, gently tucked a note inside, it said,

"Dear Parents:

Today you have received a very special gift.It may not be what you were expecting and you may be disappointed, angryand hurt. But please know that he comes with many blessings. And, while there may be pain, he will bring you much joy. He will take youon a very difficult journey but you will meet many wonderful people. He will teach you patience and understanding and make you reach deep insideyourselves to find a source of strength and faith you never knew you had.He will enrich your lives and will touch the hearts of all who meet him. He may be fragile but he has great inner strength.

So please handle him with care.Love him with all your heart and he will blossom before your eyes.His spirit will shine like the brightest star for all to see and you will knowthat you are truly blessed."

Corwin Update!

2008-02-09T13:23:00.000-08:00

It has been far too long since I last posted an update on Corwin’s Blog mainly because Corwin has been very well and keeping me busy! He is now nearly 21 months and looks more and more like a little boy rather than my baby boy! Since I last wrote here, Corwin has started crawling at 18 months ( hence I have been busy!). His development since his operation last February has been delayed, we think due to a post operative stroke. He is able to move both his sides well, but is a little weak all over with poor balance and has slightly shaky movements now and then. We have seen a neurologist who believes he may have an area of dead brain, but has ruled out an doing MRI scan to look for this due to the risk of having a general aesthetic with his heart condition. Plus, although he is delayed physically, he should have no lasting effects from the stroke. He has been having phsyio and is cruising around the sofas nicely! No sign of walking for a while yet, but we have just had an appointment for some orthopaedic boots to help strengthen his ankles on his ridiculously small feet! Heart wise , his cardiologist is very pleased with him. His heart function is good with Oxygen SATs around 80%. His valve leak is back and is mild to mdoerate, but he is on medications that are helping and it is not a huge concern.

Corwin was spoiled again this Christmas! He was far more aware of what was going on and loved unwrapping his presents. He was poorly again with a tummy upset, as he was last year, so did not fancy any turkey and vegetables and needed a long sleep, but enjoyed his day.

In January we took him on a five day break to Center Parcs with my brother, his wife and two young boys. The Pool was a big hit, and with lovely warm temperatures Corwin didn’t go blue at all! (Children with low oxygen levels tend to go blue in water). As well as loving the pool, he loved the children’s soft play area and managed to climb two soft steps!

Overall, Corwin is doing very well. He is a content, well behaved little boy who is very interactive with adults and children for his age. He loves pretending to feed his teddy ( or mummy or daddy!) in his new kitchen and puts his arms up to any adult in the room for a cuddle. He loves wooden jigsaws and sorting shapes. He concentrates amazingly well. Although he has not said his first word, he understands many and knows most of the main body parts and can follow simple commands.

I have been teaching Corwin where my tummy is, as it is fast swelling with his little brother who is due in May! We are very excited and think Corwin will be a perfect big brother. The baby’s heart has been scanned and all is looking normal.

I will try and update more often from now on! I have added some photos of Corwin at Christmas and on holiday.

Abi x

Corwin's hospital Appointment

2007-09-24T08:28:00.000-07:00

just wanted to update as Corwin had a clinic appointment and am so pleased how it went! It was an interesting appointment!

I think our prayers have been answered as his valve leak has gone!! It has leaked since birth and has got worse with each surgery..His new medicine (captopril) is magic stuff! His sats were 81% and he weighs 22lb!

We saw our consultant but we spoke mainly to a new registrar who was great! He spent a long time looking at Corwin's scan and explained yet again to us his complex heart...we were previously told Corwin has 'Tricuspid Atresia , but not tricuspid atresia' and asked him to explain this!! He said that Corwin has a 'uni ventricular heart' and he is totally missing a ventricle and has only one atrium. Literally half a heart. The ventricle is rudimentary , so impossible to know whether he is missing the left side or the right side of his heart-One is missing anyway. His one and only valve could be a tricuspid or a mitral valve, so they call it an AV valve. His Aorta and pulmonary artery each lead off from the wrong side of the heart so they are transposed (TGA).

The registrar said he is doing so well. So pleased with my little man! A bit confused that his heart could be hypoplastic left or right but never mind! It is beating and he is with us and happy.

abi x

PS the photo above is of Corwin dressed as a frog for his cousin's birthday party!

Corwin's second holiday!

2007-08-19T10:40:00.000-07:00

Hello again! Just wanted to update you on our recent holiday disaster!

Myself, Corwin, my sister in Law (Lisa) and my niece (Cerys) booked a week in a caravan on the east coast...just a little break for the children..we thought! On the first day I locked my keys in the car boot and had to call out the AA - very embarrassing!On day three Cerys was bitten by a dog so we had a trip to the local doctors. She was fine -just a little shocked with a cut finger. On Day four we had to come home early as Corwin had a nasty case of gastroenteritis and a chesty cough. Poor little man was not happy at all. By this time the weather had turned wet and so we were confined to a small caravan which was not nice when your little one has sickness and D!! I got him to the doctors on our return home and she prescribed him Antibiotics for the cough just to be on the safe side given his heart condition.

The first few days of the holiday were fun though! Corwin enjoyed a little dip in a nearby paddling pool and lots of naps in his pushchair along the sea front! He was babbling a lot on the holiday which is great as he has just been referred for speech therapy as he behind with his speech and not great with his food.

He has had a few days at home now and is feeling much better!

Not the best holiday ever, but thank goodness he is OK.

abi x

Happy First Heart Day!

2007-07-24T01:43:00.000-07:00

Happy First Heart Day Corwin!

It is a year ago today that Corwin had his first Heart Surgery. You can see how far he has come from the photos below taken before surgery, a few days after and today.

Well done Corwin! You are a star!

abi x

Corwin's First Holiday!

2007-07-17T12:30:00.000-07:00

Corwin had his first holiday this month! We went to Norfolk and stayed in my parent's caravan on a lovely camp site in the forest. We were lucky with the weather and were able to take Corwin on the beach for the first time and for a swim in the heated outdoor pool onsite. He loved picking up the sand , but wasn't too sure about the noisy sea when we took him up close! He loved the pool and stayed quite pink in his swim seat and wet suit. He was very cold when we took him out and needed lots of cuddles to keep him pink.

He was able to meet his great grandparents for the first time also!

He was such a good boy for the entire trip. He slept well, didn't cry once and didn't mind the long journey. We made sure he had a good sleep each afternoon in his cot which I think helped.

Hope you like the photos!

abi x

Clinc appointment and our little star

2007-06-26T01:55:00.000-07:00

Corwin had a cardiac clinic appointment today...the big check up with his heart consultant including a heart scan (echo). The consultant was very pleased with his progress! Without going into too much detail, he had a leaking valve and a dilated left ventricle ( his only ventricle) and both of these have improved! His Sats (oxygen levels)were 82% (100% in a healthy person) so a good level for his condition at present. I asked the consultant about life expectancy and he said there are children now reaching adulthood who have had the three stages of surgery and they are living a good quality of life. Corwin has a long way to go, but if his next op goes well we have every reason to hope he lives to become a young man.

Well done Corwin, my little star who amazes us each day!

abi x

please feel free to leave a message!

I have put a photo at the top of this post showing our little star in the local paper!

About Corwin!

2007-06-14T06:45:00.000-07:00

I thought this blog was missing some waffle about what Corwin is like!! Ofcourse I cannot stress enough how amazing he is, but I will try and sum up his personality!

Corwin is a very laid back little boy! He doesn't trantrum (yet!), he has patience and seems to have a very watchful eye. We call him our little proffesor as he seems to study objects and people a lot. He will hold objects and turn them round and round , up and down , trying to work out what they are for. He loves anything with buttons to press.
He loves other people so is very easy to take out and about as he will enjoy looking at new strange faces. He is quiet , but not timid.
He is developing a little sense of humour and likes to pull faces if he has had enough of his drink and then grin at me! He knows he is being a cheeky so and so!
He has discovered gravity and loves to push things off the table onto the floor and throw his building blocks...not something I taught him!
He loves going to bed and I leave him smiling each night as he clutches his hands together over his head. He started sleeping through at 8 months although I have to give him medication at 1am so I am not!

He is such a gorgeous little boy who is very cuddly and loving! Amazing little man!

abi x

Corwin First Birthday!!!

2007-06-04T03:46:00.000-07:00

My little man turned one on Wednesday! He had a party on the Sunday before, which was meant to be a Teddy Bears' Picnic, but in true bank holiday fashion it rained, so it was more of a chaotic indoor party with teddies here, there and everywhere! Poor Tom had to stand outside and BBQ! Corwin seemed unaware of all the fuss and just enjoyed looking around at all his friends and family. He is a very laid back little boy and did not find it overwhelming at all.

On his actual birthday, we took him to the zoo! He enjoyed watching the monkeys but banged his head on the glass as he leaned in to get a closer look, he was brave and manged to hold back tears. From late afternoon through to the evening family popped round with presents. He was completely spoiled and I have 26 thank cards to write!

He had too many presents to list here, but we redecorated a room into a playroom for him. What a spoiled little man!

It was quite an emotional week, he has been through so much and we are so grateful that he is here with us. I kissed him goodnight and asked him to be here for lots of birthdays X

May 2007

2007-05-13T14:02:00.000-07:00

Corwin is now nearly one!! He is doing very well and we do not expect any surgery for at least two years. His physical development is a little delayed, but that is no surprise given what he has been through. He has just started to sit nicely on his own and is beginning to bare weight on his legs. He has a lot of medication throughout the day and night, but it is easy to forget his condition.

We are so so proud. I will use this blog to keep you updated!

abi x

Second Stage, February 2007

2007-05-13T13:44:00.000-07:00

Corwin recovered very quickly from his first stage heart surgery and we were able to enjoy our little man. He had special milk to help him gain weight for his next operation , and he had medication for reflux.

In December 2007, at nearly 7 months old, Corwin had a heart catherisation (key hole surgery) to meassure his lung pressures and perform an angiogram (dye injected into the heart to get a clear picture of it's anatomy). Again we had to kiss our little boy goodbye which seemed just as hard as before. Corwin suffered a heart block during the procedure but thankfully they were able to get his heart rate steady very quickly. He recovered quickly and was home two days later! What a star!

The results of the catherisation were that Corwin needed his second stage soon. On Febraury 19th 2007 we kissed our boy goodbye as he was put to sleep yet again. It was harder than before as this was by far the riskiest surgery he had gone through. His heart would be stopped and he would be put on a heart lung machine. This surgery would reroute his upper body blood straight to his lungs and widen one of his holes.

This surgery was not as straight forward as planned. Corwin had very high lung pressures during surgery( dangerous for this type of surgery). They also struggled to get Corwin off the heart lung bypass machine.

We saw our little man, full of wires on life support , 7 hours later. He looked so poorly.

After a few days it was clear that he was not getting better. He had a nasty chest infection and fluid on his heart, brain, liver and lungs. His head was very swollen. He was not breathing for himself. He was unable to move his left side and had seizures. The doctors belived he had suffered a stroke.

After three long weeks, Corwin was well enough to come home. His recovery had been slower than expected, but considering the set backs, he had done very well.

We were so proud of our little fighter!

May 30th 2006 to First stage operation

2007-05-13T08:13:00.000-07:00

Corwin is born!!

I was induced into labour so that there would be a neonatal team to look after Corwin as soon as he was born, a bed availlable in neonatal intensive care and a bed at Glenfield hospital where a team of cardiologists would look after him.

After an easy and quick labour, Corwin was rushed to a trolly to be assessed, he was wrapped up and handed to Tom who placed him in my arms. We had a couple of minutes with him, he looked perfect!!

He was taken to neonatal intensive care and given a drug to keep a duct in his heart open. He was very stable so he wasn't transferred to Glenfield until the next day, I was discharged just hours after giving birth so I could be with him.

He spent a week at Glenfield hospital. His heart function was good so there was no need to operate at this stage. We were sent home and asked to look for signs of heart failure ( breathlessness, blueness, sweating).

We couldn't believe our baby looked so well!

At 6 weeks old he was looking thinner and had lost weight. He was sweaty and sleeping lots. He looked very pale and blue around his lips. Corwin was in heart failure. He was admitted into hospital. After a week Corwin had his first operation. He had a band fitted onto his artery leading from his heart to his lungs to artificially narrow it as there was too much blood in his lungs which was causing the heart failure. We kissed him good bye as he was put to sleep. This was so hard. After 6 hours we saw him again. He had been out of theatre only a short time when his heart rate had dropped and he was given heart massage to keep him alive. He recovered and was out of intensive care the next day! Five days later he was home, putting on weight and staying awake longer.

At just 8 weeks old he had overcome so much already. Our little miracle.

This is Corwin's Website!

2007-05-13T08:04:00.000-07:00

This is a website for my son, Corwin Thomas Meynell, born with a complex congenital heart desease. In short, he has just half a heart. He will need serveral operations that will not cure his condition but will help him live a longer and better life.

This Blog will be a diary of his progress. A place for those who know him to keep up to date with his progress and learn a little more about his story.

I am having to back date this diary by one year, so excuse the rushed posts early on!

abi x

January 2006

2007-05-13T07:37:00.000-07:00

January 2006, two excited 'parents to be' off to have their unborn child scanned at 20 weeks into the pregnancy. They were myself, Abi 25, my husband , Thomas, 25.

As the sonographer scanned me we asked to find out the sex of the baby...a boy! Visions of my son playing rugby flashed through my mind! I was asked to go for a walk as the baby was lying awkwardly so the nurse was unable to get a good picture of the heart. Off we went, still excited. There were two people at the second scan looking concerned, then a third, then we were told that they could only see half of the baby's heart and they were sure that our baby had a hypoplastic right heart ( a tiny right side).....

.... a scan with a consultant two days later confirmed this...we were given the option of a termination , but we wanted to see a specialist first...off to Brimingham...I was scanned by a cardiologist and given the news for certian ( we had been clinging onto the hope that this was all a wrong diagnosis). Our baby had a small right ventricle ( pumping chamber) , two holes, his arteries were the wrong way round and he had a valve missing. This condition was labelled 'Tricuspid Atresia'. We were given three options: termination ( a still birth at this late stage); allow the baby to die naturally after birth; or three stages of surgery that would not cure the condition but would help our child live a better and longer life. The longterm outcome, and our child's life expectancy with these surgeries was not known. The consultant said he had many patients about 12 or 13 years old who had has the surgeries, but sadly he had also lost many patients.

Surgery was our decision. We wanted to give our child every chance to live a happy life, no matter how long that would be. There would be no rugby for our little one, but we decided he will play golf! Ofcourse it felt like our world had collapsed around us, but we stayed strong and hoped that some clever surgeons would work their magic and we would have a very special little son, our little miracle.