When Ollie was diagnosed, after the initial shock, we emailed everyone that we thought we’d need in the journey, therapists, surgeons and audiologists were immediately put on notice, that their help would be demanded. We then calmed down and took time to look at our gorgeous little boy and smile a bit. But, in the back of our mind has always been the need to somehow give something back. For every family like us, who are sure where they are going, is a family like us 4 years ago, that is frightened and confused and needs a friend. We are determined to give something back and help anyone that doesn’t know what to do. Chris and I answer every email, every comment and will always do, so as everyone needs a hand in the crazy world of ANSD.
Each child with ANSD is different and beautiful, but more importantly our children have a multitude of causes and outcomes. We’ve found ourselves in the genetic, no possibility of getting better, CI early camp, but friends have found themselves in other parts of the umbrella (maturation, jaundice, no nerves…..). We’re all part of the same spectrum but clearly our journeys and outcomes will vary. Whilst this is all very interesting, for parents, particularly at first diagnosis, this means that the clinician’s plan can seem vague or parents are asked to wait and see for ages. There are good reasons for this, but with limited information it is incredibly frustrating.
Help is at hand though! Clever people globally are all working on improving the understanding of ANSD and more specifically wonderful, clever and practical people (I met two of these amazing women today) are working on gaining more useful information to aid parents and clinicians in choosing a pathway for their particular ANSD.
What does all of this mean? Today Ollie had CAEPs done. These are shown to give more information to clinicians than an ABR can with ANSD. From our perspective it was no more intrusive than an ABR, although the smallest Campbell decided that he didn’t particularly want to play, but a smile from such a cute young man instantly melts the heart.
We are waiting for the team to analyse the results but when Alice had her CAEPs done, it gave us confidence that a CI might work. For Ollie this wasn’t our reason for the test, but frankly I’d go a lot further than Manchester (particularly as we get a lovely guest suite and gourmet dining at Chez Delaney) if it meant that in time, someone will benefit from this research.
We have made some new friends in Francesca and Kai and we hope to be involved in further studies. As a call to arms to our many readers, if they ask, would you?
Absolutely!! If we felt that our journey of test results would help research then yes we’d be at the front of the queue.
But as you know Myla’s journey isn’t straight forward when it comes to test results!! We met at addenbrookes on Monday and they were fantastic looking at doing caeps test before a second abr and seeking advice from the emmeline centre.
For us this is a big step forward and the fact that she now has reflexes is again very positive yet confusing? …. Sometimes I just have to laugh at all the twist and turns…… But this could mean that the aids have effectively jump started Myla’s AN.
Ollie looks gorgeous in his new photo, enjoy your summer hols xxx
Sam and Myla Muffin xx