Monday, July 19, 2010

Beckwith-Wiedemann & My Master S

First week back into the swing of things after two lovely weeks of school holidays and I now remember why I love holidays!  Wow we were busy... Miss G started at her new/old school.  She was there for Prep and Grade 1 and after many issues at the public school, she is back in a caring Christian environment.  It has been delightful to pick up my smiley daughter who has actually enjoyed her school day.  We are so very blessed with her new teacher and I know she will be an amazing role model to Miss G as she too has a close family member with health hiccups.  I rarely use the word disability, to me my children are not disabled - they are very able - just have a few hiccups!

Master S had a day of appointments at Melbourne's Royal Children's Hospital.  I have gained great connection from another lovely BWS family who have a blog, check it out in my sidebar.  I thought I would begin to share our journeys too of Beckwith-Wiedemann Syndrome.  My Master S is now almost 9, so we have a different set with issues going now.  We are beginning the process of major maxillofacial works.  This is oral and orthodontic work.  He will be fitted with an implement that will enlarge his upper jawline this September.  With the size of his tongue still being quite a large size - I am hoping it will not cause him too much discomfort.  We have been told he will have trouble with his speech and eating - I will let you know how he goes!  He is such a brave chap and we have discussed putting together a slide show for his classmates to see.  The long-term goal is orthognathhic surgery; basically jaw surgery.  A complication of the macroglossia (enlargded tongue) is malocclusion of the teeth and the appearance is similar to that of someone with a cleft palate.  He also has an open bite at the front of his mouth and a cross bite at the back of his mouth.

If anyone has a connection to someone with Beckwith-Wiedemann syndrome who has had these major maxillofacial works done, please let me know.


I thought I might share some pictures of my Master S and his experiences with Beckwith-Wiedemann - it may be something you can relate to and bring some peace of mind to know someone else out there is dealing with the same stuff.  Each time he gets a tummy ache - I am off to the doctor.  He only gets them once or twice a year, and this week it has been accompanied with loss of appetite.  I try to hide my anxiety, however the thoughts of whilms and hepatoblastoma keep ringing in my head.  So far so good, and we will get another scan this week!

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