Edward's scan at about 4 weeks old

Edward and his space blanket

New chair

Mummy bought Edward a new chair this week. We had tried one in Oxford and Edward sat very well in it. His other chair is good, but takes time to get Edward in and out, so is no good when he is chocking.

Edward's operation

Where has April gone? Edward has now had a gastrostomy and nissen fundoplication, but it was not plain sailing and he has been very poorly. It all started at the end of the operation, when Edward's 'floppy larynx' caused problems and he ended up in the High Dependency Unit. For the next two weeks he kept all the doctors and nurses at Oxford Childrens Hospital on their toes, with a never ending string of problems - intollerance of feeds, diarrhoea, weight loss, muscle spasm, very low oxygen saturation, heart rate alternating between 50 beats per minute and 180 beats per minute, constant screaming and siezures, to name but a few. Oxford finally discharched him, but we ended up in Milton Keynes Hospital 4 days later, where we stayed for another 2 weeks. The medical staff  painted a very bleak picture for Edward, as they often have since before he was born.
Edward finally came home on 16th April with 2 carrier bags of medication, which included 3 different types of strong sedation/pain relief and the reminder that the Complex Care Team can be contacted 24 hours a day!!

Well Edward had different ideas to that of the medical fraternity and certainly wasn't ready to give up on life! He is now on full feeds (in fact dietician has put him on a diet as he was gaining weight too quickly), off all pain relief, sedation and reflux medication and starting to take note of his surroundings again :) He still has trouble with sleeping and digestion/wind, but we are working on these.
So once again this very special angel has shown that hydranencephaly children are fighters and far more reciliant than doctors give them credit for.

Edward has a tooth!

Edward's first tooth finally came though a couple of days ago. His gums have been swollen for ages and obviously sore. So my clever Grandson will not be toothless for his 1st birthday!

Why do gastric pumps always have to stop working during the evening, when there is no one to contact? Edward's pump decided not to work last night. All it would do was 'beep' constanly at me. I tried new tubing, different settings, putting it on charge, but all to no avail. There was no other option but to hold a syringe in the air for an hour and let gravity do the work. On a positive note, it was a good work out for the arms! Then to add insult to injury, the pump worked perfectly, when Gabby used it later!

Edward's reflux is bad at the moment. He seems to spend every feed heaving and  bringing up milk. Then inbetween feeds it appears to be stomach acid, which is obviously very painful for him. He spends alot of time moaning, which I suspect is discomfort caused by the acid. Roll on March 16th, when we will be going to Oxford Childrens Hospital for a gastrostomy and nissen fundoplication.

Just shown Gabby the old remedy for cradle cap - olive oil rubbed into the scalp. Edward's hair is nicely greased now and standing on end!

Introducing Edward

My first post about Edward's journey is almost a year late! My Grandson will be a year old in 7 days time!
What can I tell you about him - well he is one remarkable little boy. The doctors told us that he was unlikely to survive the birth and if he did, would certainly not live for many months! Edward proved them all wrong. Edward has hydranencephaly, but more about that in future posts. For now I just want the world to know how proud I am of you, Edward and how much you are loved.