Always improving

The occupational therapist came out on Monday 26th July with a sales representative from a company called R82 to supply a chair for Lily-Mae.  It was amazing to see her sitting up with the correct posture and holding her head on her own for the first time in ages. So exciting - it comes in pink as well and if we are really lucky the head restraint has speakers in and I can plug my ipod in!!

She is just continuing to improve to defy the odds.  She definately doesn't fit the mould and if she is my little girl she'll break the mould without a doubt.  She is now managing to hold her up for longer periods and sit aided for longer and longer.  We have also had another sales rep out for a new specialist cot next week.  Just gotta find some cool sheets to help with her getting to hot.  Next appointment is with a company called Leckey who are assessing her to be supplied with a standing frame called a squiggle.  Naturally my colour choice is pink.

We have a review appointment at Great Ormond Street Hospital middle of October and I expect them to be pleased with the improvement she has made.  She has changed so much since she was first seen by them.  Her speech is improving - she says a new word nearly every day.  Her latest are clap hands, lager, and counting three, four.  There is not a day go past she doesn't make us smile or laugh.  She is such a little character.

We still have 1000 questions and I'm a nightmare with my little notebook.  I make copious amounts of notes at most of her appointments.  I think part of it is my coping mechanism.  When we get copies of reports I take a copy and go through and highlight any words I don't understand then look them up and write down what they mean.  My opinion is she might be their patient but she is our daughter and the more I know the better we can help her.