Sunday, 24 February 2013

Where we are at!

Time has been flying past and Faith is doing really well, she got over her last UTI after a long course of Nitrofurtoin. Her eating has increased dramatically and she is looking fatter, haven't weighed her yet but, the plan is to do that this week. Faith has more energy and is drinking more water too so that will keep her hydrated. We have increased the pure cranberry juice on the advice from the Nutritionist and she seems to like the taste now so that is really helpful. At last we are weaning Faith off her last daily medication, Keppra, it is going slowly than we originally anticipated but it going which is the main thing. By the end of March she will have no more daily medication. We have seem her more alert, saying more word sounds and interacting even more. We have also started taking Faith to swimming lessons again and had her first one of the year last week, she went all shy, it has been three months so she has probably forgotten how fun it can be. She was a cuddly koala who just wanted to watch, not play this time.

We have started back at physiotherapy and hope to be able to go weekly if we can raise the required funds. We can see so many benefits just after a few weeks. The first week we were given different leg stretches for Faith and encouraged to leave her leg wraps on for longer than we had been. So we put Faith's leg wraps on when she has her midday sleep and then for other periods during the day so around 3-4 hours in total. At our last visit, the physiotherapist could feel the tendons stretching that needed to be and said, "you have been doing the exercises". We took Faith's Squiggles standing frame along as she didn't seem that comfortable in it lately and that is because she has GROWN in length. So, we lengthened the Squiggles standing frame and she now looks so comfortable in it and we have been able to have her in it daily and Faith loves it.

Our big goal is to help Faith build up enough strength so that she can sit up and to get her to that stage we have to get her comfortable rolling side to side and practised in tummy time. The ipad is a great resource in motivating Faith to roll side to side, though I did find she likes to attempt to log into the iTunes store and archives my emails. LOL. We have managed quite easily I am happy to say to incorporate rolling and tummy time into our daily routine and with Faith being so well there has been lots of good opportunities. It is exciting seeing her strength develop and it is wonderful to have such a supportive and encouraging physiotherapist part of the team to help Faith grow and develop more. With her growing I think it is time to take the Stingray R82 pram with us next week to have it refitted as she hasn't found that very comfortable lately. Since the Squiggles standing frame needed resizing I assume the pram would too. Exciting times!


  1. Joy I have a friend whose son has cerebral palsy. The doctors said he would never walk or talk, he does both. He is Joy's age. I admire my friend and in the same way I admire you. You both seem to keep looking forward at all the possibility instead instead of wallowing on why your child is going through this.

    1. thanks so much for your encouraging comment, it's so nice to hear how others push on through too.