Since returning home Chiara has thrived and progressed beyond words. She now sleeps extremely well in a bed, still has her episodes of getting up but on comparison with previous times she is doing well. Her speech is a little behind, she tries hard and seems to have her own wee language but considering this time last year she wore hearing aids and faced the future of being deaf and struggling with speaking she is doing fantastic. She does however think my name is "Bob" and calls me this all the time which is cute and funny. Her hair is regrowing and as yet I am unsure of what colour she is going to be sporting this time around. She still has an NG tube in for medicines only as presently she is on 37 syringes of various medicines per day.
On 20th July 2012 Chiara celebrated her 2nd birthday surrounded by those who share her life. Her brothers and Nana and Papa unfortunately could not make her birthday as they were enjoying a well earned break in Portugal.
Chiara had her examination carried out last week by her Hurlers Specialist who gave us the great news that at the moment Chiara's only other problem appeared to be her spine which will be operated on later in the year or start of next year. She remains off overnight BIPAP, hearing aid free and walks unaided.
Today we were told that Chiara's hospital appointments would be once weekly instead of twice weekly which is a big step forward.
We have a family holiday coming up soon which I cant wait to go and make us feel like a "normal family".
This hopefully will be my last entry to Chiara's blog until her next operation. From now I will be concentrating on getting my family back on track after a long 2years.
3 months from now Chiara will be able to attend soft play areas, mix with other kids, join kids clubs and I will say hello to employment again.
Last week we joined Ben Fraser at his home to mark his one year diagnosis of Leukaemia. This was a fantastic day enjoyed by everyone. There was a bouncy castle to which I took great pleasure in watching Chiara play with the other kids. A first for Chiara as she is still unable to mix with kids. All the families that were there all were in same position as Chiara with low counts etc. I think I speak for everyone who was there that day when I say it was brilliant and thanks very much to Ben's family for a wonderful day.
Sadly 3 kids from Chiara's ward received their wings and I myself found this a very trying and upsetting period of time. It made me realise how naive I had been in thinking everyone who entered Schiehallion recovered and sooner or later went home. For a long while everyone that I met in the ward became like family to me and when they hurt I hurt for them. Its something I don't think anyone will ever realise or relate to unless they have been in that position or been one of those parents/carers. I shared my feelings with them like I had known them forever, told them more than I would my own best friend. Friendships that will not end, you all know who you are . x
For everyone who supported Chiara and followed her story thank you so much but for now its on a break !
