Well, today's trip to London was a good one! He had another ultrasound and the haemangiomas on his liver are shrinking, as is the one on the outside. Although, if caught or scratched, he could still bleed badly, he is just about healed. Hes fine without a dressing which gives both him and us so much more freedom. Hes been swimming (all of 5 minutes, wasn't too keen but we'll keep taking him and I'm sure he'll get to love the water) and he can be bathed properly every day! That might not sound exciting, bathing your baby but, its great to be able to put him in a bath and play and get him clean.
So, now we've been told he doesn't need to go back to GOSH until NEXT YEAR :o) He'll have another scan and check-up. Unless we have any problems in between, I will just update with photos every month or two to let everyone see how the haemangioma is disappearing.
This is the journey of my son, Fox. He was born with a large haemangioma to his right side. I created this blog to help other people going through the same thing and also to urge any parent, if they feel it is necessary, to always try and get the best medical attention they can for their baby while he or she is still young. If you're not happy with what you're hearing, don't be afraid to ask for a second opinion.
hia i come accross this i hope you dont mind me commenting but my son damien who is 9 weeks old at mo has one of these types of birthmarks on his top lip this is the second time it has slightly blistered and we are waiting for the referal letter form from doctor so we can also go to GOSH for a second opinion as we keep being told noone will do anything to help him, cant wait its been a struggle to get this far as to go to gosh and am well shocked at the diffrence in your sons pictures and good luck for the future hope it clears up nicely for him :) xxx
ReplyDeletehi, i'm glad you're getting to GOSH! and while hes so young, thats really good! he will get the best care and if any intervention is necessary, they won't let you down :o) he might not need anything and in a few years, it may just be barely noticiable. good luck. in time, it will all be a distant memory! :o)
ReplyDeleteHi there
ReplyDeleteI've read your blogs and seen your photos on the progress of Fox's birthmark over the past 6 months or so, so seeing the photos from January I've noticed such a difference!It really looks like it's starting to fade fast! You say that he started on the propranolol quite late but do you think it has made a difference?
My son has a haemangioma on his cheek and luckily it's quite small and we've not had any problems with ulcertation or affecting breathing, vision etc just annoying that is is on his cheek as everyone stares at him :0( Anyway we're going down the watch and wait approach in the hope it will go on it's own.
I never knew anything about these types of birthmarks until Rohen's appeared and it's blogs like yours that raises awareness and gives valuable information to other parents in a similar situation. For that I thank you! :0)
Thank you, its good to know its helps! Which is the reason for doing it in the first place :o)
ReplyDeleteI'm not sure if having the Propranolol did make much difference or not. I have seen it make a difference on younger babies (weeks old) but I think with his already being through what it had, it was already large and very raised.
I'm sure the eait and see approach will work out fine, especially if hes having no troubles, It will go, Fox's is staring to disappear quite a lot now in comparison to how it was but obviously, hes quite scarred anyway and its still very loose and raised. Will post some update photos within the next 4 weeks :o)
Thank you for your comment.
hia damiens mum again we went to our appointment at GOSH and there are putting him on that propranolol so am well pleased am just waiting now for them to contact me about our first appointment cant wait :) hope fox is still doing better he a little cutey xxxx
ReplyDeletehia damiens lip is loads better now has shrunk loads and looks better every day am so pleased we went to GOSH, here is a link to his album i put on facebook to show it grow and shrinking if you wanted to have a nosey http://www.facebook.com/#!/album.php?aid=169807&id=519726715 iv been looking at foxs pics he looks loads better too really pleased for him that its clearing up nicely, has he been ok with everything? xxx
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