Communication
Sophie is still communicating really well, though we are sensing some frustration when we can’t understand what she is trying to tell us, this was inevitable but something we really need to work on to ensure she can get her message across. She can nod and shake her head really well now in answer to questions, she will wave hello and goodbye and will point at the DVD or toy she wants to watch or play with. She is also getting very good at eye pointing and can easily recognise familiar people in photos by looking at the photo and then looking at that particular person.

General health
Sophie’s diet has been changed to a special high carbohydrate and low fat and protein feed. This is to cut down on the amount of fat she intakes as it is thought that she possibly has a fatty acid oxidation disorder which prevents her body from processing fats in the correct way. This has caused fat to accumulate in her muscle leading to her severe weakness. Unfortunately, the diet doesn’t seem to have given Sophie any more energy but it has led to her losing weight; she is now much longer and thinner. We are waiting results from genetic tests to determine if Sophie has a known fatty acid oxidation disorder called Multiple Acyl Dehydrogenase deficiency (MADD).

Over the last month or so, Sophie has become more tired. We are hoping this is a passing phase and that other ‘normal’ things are causing her tiredness such as growth spurts and teething, time will tell but we are hoping very hard that this tired phases soon passes as it has before.

Charity
The Sophie Story Summer Fun Day was a huge success raising over £3000 for CHASE Hospice Care for Children. A huge thank you to all our friends and family for helping us run the day, especially all our close family and friends, who all helped out. The day wouldn’t have been such a success without everyone’s help. Click here to read all about the day.

Sophie’s Auntie Becky is training hard for the Great South Run in October with all proceeds to go to CHASE, we wish her lots of luck as it is 10 miles! You can read more about her run here.


Sophie with Mummy, Daddy and
cousins at her Summer Fun Day.

CHASE
After the Summer break, Sophie is now back to weekly music therapy sessions which she really enjoys, he favourite instruments are the chimes which she can easily run her fingers through and the drums which she likes to bang and also lay her hands on to feel the vibrations. Sophie has also started going to Little Chasers again too which she loves. CHASE held a ‘Summer Fun Day’ a few weeks ago which was a fantastic day out for the whole family. The theme was Christmas so there were reindeers, Father Christmas and Christmas carols!


Sophie meets Andrew Castle at the
CHASE Summer Fun Day.

Final words...
Sophie is no longer a baby, but a gorgeous little girl who continues to amaze us with her inner strength and determination, making us proud of her everyday.  


Trying out Auntie Becky's sunglasses!