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

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

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

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!