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

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

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

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

Adam Partridge is fundraising for Little Hearts Matter - JustGiving

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