A long night last night with Sadie wide awake and teething.  She's been teething on and off for a few weeks now and just wants to sit and chew our fingers.  Sadie spent last night with lots of cuddling and watching her disco lights.  In the end she had to come back in our room so I could get some sleep.  Joys of parenthood!  Thank goodness for coffee!

We had another physio session at home this morning and Lisa told me she can see improvements already from the exercises we do several times a day.  The aim is for Sadie to be comfortable, to stop her posture from worsening (and hopefully improve it) and to get her to roll. I'm told this could take a few years (which I hope that we will have) but so far things are progressing well.

I've done a bit of digging around and found that there at at least 2 children's charities who can help to fund specialist equipment for children like Sadie (Cauldwell Children & Variety Club).  I've been told this morning she's also going to need a special mattress quite soon so I'm glad to know there may well be some help.

I'm looking forward to Drew's first Father's Day and we're also celebrating our 5 years together so we're hoping for a peaceful evening on Saturday.  I hope all the other daddies have a very happy Fathers Day too.

I just wanted to say thanks to everyone for the continued support and lovely comments.  I wish I knew a bit more techy stuff so I could open a comments page on Sadie's site, but its a bit beyond my ability! Anyway, the messages have been really great and its truly boosted my spirits.  Its good to know someone wants to hear about Sadie, Drew & me, so I think I'll keep on blogging for a while as its quite cathartic too - I highly recommend it!

Later today I got a call from a lady which has been really helpful...  Jacqueline's beautiful daughter Tabitha also had Edwards Syndrome (Trisomy 18).  The progress Tabitha made during her life was truly inspirational as she learnt to stand, laugh, clap and sing!  Sadly Tabitha passed away in December aged 3 years and she has left an amazing legacy - a charity called Tabitha's Toys (http://tabithastoys.org/index.html) set up in her memory to loan toys and equipment to other childen with special needs.  Tabitha's story is also a huge inspiration for mums like me who so much want to help their children with Edwards Syndrome.

The convesation with Jacqueline today gave me so much hope.  Its realistic hope as we know Sadie's condition limits her significantly and that her life will be very short.  However, Jacqueline talked of similar experiences and feelings to mine in the first 6 months of Tabitha's life.  She also talked of how much she was able to help Tabitha to live a full and happy life.  I am looking forward to Jacqueline's visit to see Sadie and me in the next few weeks.  She sounds like a very strong and kind  woman and I am pleased to have found such great support and also a role model to help me be the best mummy I can be to Sadie.