Monday 21 March 2011

Blogging break

I have had quite a long break from blogging recently. We've had quite a few upsetting things happen over the past few weeks and sometimes you have to focus on your family over everything else. I don't tend to blog about personal things, but the past few weeks have been particularly stressful and writing about this kind of thing can often help...

Our daughter was born with a large hemangioma birthmark or her arm. This wasn't really a problem in itself, but when she was five months old it became ulcerated and infected. We had to push our GP to get a referral at the local hospital, we both knew something was very wrong. It was incredibly painful for her because it had turned into a raw, open wound. It's impossible to explain to a child of that age why their arm is hurting so much, so she would scream and scream if anyone touched it.

As well as being referred to the local specialist, I did some online research and found the Birthmark Support Group (based in the UK). If you have a child with any type of birthmark, I strongly recommend getting in touch with them.

To explain everything that's happened over the past nine months would take me forever, but we basically felt like our daughter was not getting the right treatment. Her arm was constantly ulcerated and it became infected three times, so that involved three lots of anitibiotics in a 15 month time span.

The Birthmark Support Group had put me in touch with a specialist nurse at Great Ormond Street Hospital in July 2010. We contacted her again in January 2011 and sent her some photos of our daughter's arm. She was shocked at the condition of the birthmark and asked us to get an immediate referral. Our daughter was admitted to GOSH in early February. The treatment she received had an almost immediate effect. Her arm has continued to heal at a rapid rate over the past few weeks and we are so pleased with her progress. After so many months of cleaning and dressing her birthmark, it is fantastic to see the improvement. She is no longer in pain and any parent would feel immense relief at this.

To respect our daughter's privacy, I'm not going to put photos on my blog, but if there are any parents who would like to see the progress of our daughter's arm pre and post treament, then I am happy to discuss it via email. I'm also happy to tell other parents the type of treatment we received from Great Ormond Street. I know how little information there is out there about infected hemangiomas, so if I can help anyone else - I'm happy to do that. I think if you feel that your child isn't getting the right treatment, it's important to push for a second opinion - after all, children need us to stand up for them and get things done properly.

On top of all this, my father-in-law passed away on the 21st February, just days after we returned from Great Ormond Street. I lost my own father in 2006, so I know what my husband is going through - nothing prepares you for losing a parent.

So it seems we've had quite a lot to contend with recently. I'm hoping to get back on a more even keel soon - crafting is my therapy, so I'm sure I will back making things for Pouch very soon.

Many thanks to Laura George, who very kindly allowed me to use her "Things Are Going To Work Out" print at the top of this blog post. I found it a couple of weeks ago whilst browsing on Etsy and fell in love with the sentiment it conveys - I think it's going to be my new mantra!

1 comment:

Laura Johnson said...

Just wanted to send you some encouragement for everything you and your family are going through xo


Related Posts with Thumbnails