Latest GOSH visit

We took Fox back to GOSH for his latest review on Monday (24th Aug) and Prof Harper was pleased with his progress. the only thing that has changed about his care is to reduce the dressing changes from three down to two per week. We'll try this and if we encounter any problems we can go back to three. I'll continue to send photos to Jane Linward when we do the changes and we're back again in either 4 or 8 weeks (unsure until we get letter!).

The troublesome area that was open for so long is almost gone. Hes still on iron and Propranolol.

I was browsing the web when I came across a haemangioma website www.hemangioma.com, Dr Barry Zide's site. Hes in New York. There was an email address to submit photos and I'm always willing to do this for medical professionals, anything to help teach. Dr Zide rang me first thing the next day to offer removal of Fox's entire birthmark. We're too scared to do anything like this at the minute (process can begin from 15 months of age) while its under control and of course it would need a heck of a lot of fund raising too! We're very grateful for his call though, and will definitely keep it in mind when Fox is bigger/older and the possibility of it becoming a cosmetic issue for him.

Fox celebrated his first birthday this week too. Thank you to everyone who bought him great gifts, he had a great day :o)

So, I'll add some pics too and you can see how great hes doing for yourself :o) Again, just click on photo for full size.

Update

Its always hard to remember something bad when everything is going well isn't it! Its so hard now to think of Fox screaming every time we changed his dressing, teetering on the edge of sanity, being careful not to fall - watching him scream in absolute agony. Waiting for him to wake up after another anaesthetic. Wondering if it'll be a 'good one'.

Fox is just a different baby to care for now. Hes still taking Propranolol at 8am, 4pm and midnight and iron morning and night but, hes 'able' now, he can do things and be happy. We can, rather gingerly I might add, lift him by both hands and swing him around to make him laugh now. He had his fist bedtime bath yesterday, obviously a bit shallow so not to wet dressings but its still nice to be able to do it, if only for three minutes.

Hes soooo naughty now too! Always in trouble climbing somewhere and running (crawling at speed!) away from us. Anyway, I've babbled now so I'll just put some photos up of this last week on of the Letchworth 50s & 60s festival were Fox proudly sat in his Marmet pram, one of Fox finally being himself and one of his birthmark, the Trimovate had worked great in just 4 weeks, the wound hes had for ages is now nearly all closed.