Hi, my beautiful daughter Mia was born with PRS on the 10th November 2008 and as with many others we had no idea there was a problem whilst in utero. She spent the first 4 weeks at Princess Margaret Hospital for Children in which we learnt how to feed her properly with the Haberman Feeder...a challenge and one that I never wish to revisit. For the past 3 months we have been using the Pigeon Spoon Feeder as she is due her palate surgery in a few weeks time; once again a difficult task to master but once done so well worth it.
We are constantly amazed by our darling daughter as her chin and jaw seem to have grown considerably since birth and she has taken to be prodded and poked by all and sundry so very well. We have learnt recently that the reason she has PRS is possibly due to Stickler's Syndrome...she is undergoing full body x-rays and blood tests to confirm this prognosis. I must admit that I am scared of the outcome as I really don't know what the future will hold for Mia...let's just say I am preparing for the worst but hoping for the best.
Anyway, I just wanted to introduce myself and Mia...we are so grateful that there is a place where we can share our experiences. I will definitely be visiting the site more often to read other people's personal journey's with children with PRS.
Hiya, Thanks for sharing your story. I would love to hear an update on Mia's prognosis and to know how you are all coping. We have a fabulous contact at the sticklers support group. If you feel you would like to speak with her please send an email to the info@ address and i will pass on the details. Talk soon.
Wow what a coincidence...my Mia is now 14 and a half months old and is doing pretty well. Her palate surgery was successful though she has a bifidus uvula as it didn't take however I am told by doctor VJ that she probably won't need further surgery down the road as long as her speech & language development is not hindered by it. Her recovery from the surgery was terrible and I wish never to witness the pain she was in ever again. Since having her palate repaired and grommets inserted she has improved out of sight and now most days I don't even notice that she has a problem. Mia's jaw has grown out beautifully though it still has a bit more growing to do and with time we are certain that it will come out even further. We are being referred to speech therapy because her language & speech acquisition is definitely behind but we knew that would probably be the case so were fully prepared for it.
How is your little Mia doing? I would love to hear more about her and your experience as well.
Mia had her cleft repair on the 14 Dec and beside a few feeding (solids) problems is doing really well. We start the Speech journey soon along with the many other appoints. We have also noticed such a big difference since the repair and grommets. Mia seems to be hearing better and responding to new sounds she can make. What doctor did Mia's cleft repair?? We had Dr Hewitt and what a fantastic surgeon he was! The operation was a bit of a stress and I must admit I have cried many tears. So glad it is over. Do you live in the metro area??? Would love to meet you. Hope to hear from you soon
So glad to hear that all went well with your Mia's cleft repair, I agree that since the grommets were inserted there was a definite change in her responses to sounds. In response to your question about who undertook the cleft repair well it was Dr Vijasakaran or Dr VJ for short... coincidentially we also see his brother who is our ENT specialist.
I have found that since Mia has turned 1 we haven't had as many doctor's appointments which has been good as those trips to and from PMH can be a bit of a stress. Maybe when your Mia turns 1 the appointments will slow down for you and you can get on with life a bit more. It seemed like last year I was at PMH on average once a month and they seemed to escalate the closer she got to 1 year old. Needless to say I am so happy that the first year is now done and dusted!!!!
Since my last post I have started Mia with a Private Speech Therapist as I felt that she needed to get started with assistance in speaking straight away. We go every two weeks in which we do a lot of play activities to encourage her to speak as well as teaching her Makaton Sign Language. At first when the therapist suggested we teach her sign language I was taken aback but when she explained that we were going to use it as a tool for Mia to communicate and bridge the gap between her not speaking to speaking!!!
I live in Beeliar which is 20 minutes south of Perth city and would love to meet up with you sometime as well. Where about do you live and what days are best for a catch up.
Anyway, hope to hear from you soon. Take care. Hope all is well with your Mia.
