Ava Update August 2015

Ava’s doing well… She’s five-years-old now, and the light of our lives. Her energy, enthusiasm and friendliness increases daily (and if you know her grandmother – you’ll ‘get it’).

In 2014 it was discovered Ava had a cyst in her head, technically called cystic septum pellucidum (I had to have the neurosurgeon write it down for me). They were concerned with the rate of growth and we made the decision to do another CT in six months time.

In April 2015 they did another CT and discovered it hadn’t grown… and it looks like we’ll just need to monitor the cyst long term. A huge relief…

SO… are we out of the woods with Ava? I think it’s safe to say we’re meandering along the outer trails… She’s still got a small hole in her heart, the cyst in her head, and hyper flexible joints (and don’t get me started on genetic testing), but the future is looking bright.

Truth be told, I never dreamed we’d be where we’re at today. She’s a delightful tease with her younger brother, and when he’s not wearing make up, she’s encouraging him to eat the biggest bugs in the yard.

And I feel very, very blessed. Please read through the archives and learn about craniosynostosis, and Ava’s Journey.

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One Response to Ava Update August 2015

  1. debruxelas says:

    Hello Melissa, our daugther Cloe also was born with Mercedes Benz syndrome on August 11th. We had the surgery on October 15th, and she is recovering well. In our case we had a saggital and lamboid craniotomy and remodeling of the cranial vault. The surgery lasts 5 1/2 hours and we stayed 5 days in hospital. Your story is very useful for all the parents suffering this congenit disease.

    For us was our second journey, because our older daugther Vera had a cardiopaty and needed surgery when she was 3 months old. She is now completely recovered and having a normal life, so I hope for Cloe is going to be like this as well.

    Sorry for the bad english, we are not natives.

    Barcelona, Spain

    If somebody wants to contact us for any support, advice, etc. we are happy to help.

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