Mother's Day!

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!!

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!

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

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!

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!

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!

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