It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Tuesday, 3 September 2013

Ethans Appointment

We are very lucky that we have access to a psychologist at the Freeman.  She works with Ethan to help with his issues that he has surrounding going into hospital, bloods etc.

Ethan's next Cardiac appointment is 19th September and we were told to expect further surgery after this one.  We shall see.  At the moment I feel like I am staring down the barrel of a gun.

As with all of us, we have up and down days.  Today is most definately a down day!

Stay healthy xxx


Sam & Ethan xx

Thursday, 18 July 2013

Hi Folks,

Its been a while since we have blogged but I promise we'll keep you updated more!.

Ethan is doing great in school, far better than we thought actually.   He is loving school and his friends.

Since we last blogged, Ethan has had numerous balloons & stents, as his pulmonary stenosis seemed particularly aggresive.

We are hoping that might last a couple of years until his Rastelli needs to be re-done, but we were advised that they would be looking to take him in after his next appointment and start the usual round of CT Scans etc.

He's been left with some left sided hypertrophy due to the stenosis that they dont think will get any better now.

Hes lovely, and coping very well.  He has physio every week for his legs and tries his best to keep up.