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