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.