I thought I'd write a quick update whilst Sadie is chilling out and finally cooled down.  Its so hard keeping babies cool in warm weather.  I don't know how people go on in warmer climates.  The moment I pick Sadie up she's warm and sticky and she's not worn much but her nappy for the last few days.

This week we've been to visit Natalie and her youngest daughter Hetty.  Vicky and her youngest son William were over too and it was good to see Sadie nice and relaxed in the company of other children.  Its great for me to get out and see friends more as I've been unable to do that when we were keeping Sadie away from children  but as we gradually and carefully allow Sadie to spend time with some other kids I get to enjoy a good natter and catch up with everyone.

We also had a visit from Judy, who manages the Neonatal Unit in Macc hospital.  It was great to see Judy as we'd spent so much time together in the 2 or 3 weeks after Sadie was born and she was an amazing support and I can't begin to express how much that helped us in the early days in coming to terms with Sadie's diagnosis and in building the confidence to take Sadie home.  I have never met a more dedicated team.  It was very deep snow in the January as I'm sure you can remember and the midwives and nurses in NNU would walk many miles to work at any time of day or night to make their shifts.  Some staff, including one heavily pregnant member of the team chose to stay over in the hospital after their shifts because they feared they'd be snowed in at home and be unable to return for the next shift!  Drew and I were bowled over by the commitment of the team.  I have so much admiration for their skills, dedication and compassion.  It's truly inspiring.

Sadie's Great Auntie Mary visited this week and spent a lovely day with us.  It was great to catch up and to hear all the stuff Mary's been up to - she never stops!

We had a flying visit from Midge as she was passing nearby so Sadie was able to have a quick cuddle and we've had the normal visits from Nanna and Grandma - wild horses wouldn't keep them away each week!

Physio went well this week.  We've had funding approved for the activity system for Sadie.  The Mobberley Trust have been fantastic and I can highly recommend them as a source of help for anyone with a specific need in the village.  We've ordered the equipment and are looking forward to seeing it help Sadie.  Sadie's coming along well and using her hands much more.  Sadie enjoys some physio but kicks off a bit when she does some tummy work.  It must be very hard for her as its very tiring and I think she gets quite frustrated.

Sadie had a good step forward this morning when she was lay on her tummy and managed to move her head from right to left. It doesn't sound much but I have been working with her on that for a while now and its something she needs to be able to do to strengthen her neck. We were very pleased for her and I'm ready to help her through the next challenge.

We skipped hydro this week as Sadie had been up most of the night before in a bit of a state and couldn't be calmed for a few hours.  We always worry when she's inconsolable as I'm told this can indicate heart failure so its an anxious time, but she was happy again before long so we expect its just colic and teething.

My brother, Ian is visiting tomorrow with his girlfriend, Caroline and on Monday Noelle is popping in. Sadie has her first Grandma day on Thursday, when my mum is looking after her for the day.  Jacqueline from Tabatha's Toys is visiting on Friday and I am really looking forward to meeting her - a busy week!

I have lots of form-filling to do.  Its amazing how tough it is to register a baby as having a disability.  I think I have only seen the tip of the iceberg with all the paperwork there is!