Our Family

Our Family

Wednesday, 31 December 2014

Goodbye 2014

Its that time of year again.



My biggest regret of the year is not keeping as up to date with the blog as I would have liked. In January last year Robyn was just about to start attending nursery at the local child development centre where she would have more regular access to her therapists. She had only just about mastered sitting unaided and got tired easily doing this. She required a lot of extra padding and support in her chair when she first started. Over this year Robyn has gotten much stronger, she doesn't need nearly as much support to maintain a good posture and can sit unaided on her indefinitely. She has also mastered pulling to stand and now no longer needs any support from standing frames to stand and play with her toys on the play table we have. Robyn is cruising round the furniture well now too. Her biggest achievement though was mastering the transition from lying to a sitting position. This took a really long time for her as her muscle strength is very poor still compared to others the same age, some of this is from the hypotonia but also the extra months she spent lying in hospital delayed her strength developing.

This last week Robyn's balance has also begun to manage allowing her to stand unaided for around 4-5 seconds. This is a very exciting development especially considering children with CHARGE often have very poor balance due to having problems with their inner ear structures.

Communication has also taken some massive leaps this year with Robyn's makaton skills coming on brilliantly. Robymn can now sign around 40 signs, with around 30 of those being spontaneous and not just copying us when we sign to her. This is amazing for us as Robyn has no words yet so she can let us know what she wants to eat/drink/play with much more easily.

Hopefully 2015 will see her walking and talking.


Tyler has had a really busy year too. He also started nursery in January in room for 2 year olds. He had a brilliant time there and made lots of friends. His speech improved massively due to chatting constanty to all his new friends and we always found it quite surprising how good his speech was compared to kids the same age. Over this year he also mastered potty training, so another big milestone knocked off his list. Yay. In august he moved up to the standard room for 3 year olds in his nursery and has adjusted really well. He is slowly coming to terms with sharing and talking about how he feels rather than tantrumming so that's great. He has enjoyed showing off his many skills at nursery too. He can do a 50 piece jigsaw by himself, he can also count to 10 and is beginning to learn the alphabet. e can recognise his own name written down and when writing is starting to manage recognisable letter shapes too.

Its amazing to look back at how far they both have come this year.

Fingers crossed for more exciting times to come in 2015.

Happy New Year to all