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!

Keppra Weaning

For so long we have seen Faith on so much unnecessary medication and over the last year we have been weaning her off all these nasties. There was really not good reasons to put her on these medications, I think it was because the doctor's didn't know what else to do so they comfort the parents by giving more medications with the hope it will help the child but make the parents feel like they are doing something. Faith is down to one medication to get off and I must admit it yet again it caught me off guard of how it is affecting her. With each medication wean doing different things to her. We have started really slow, like with all the other medications, but Keppra is proving a little different.

For the last several night's Faith hasn't been sleeping very well and we have put this down to being on antibiotics and having a infection but it still seemed a little different than before as she didn't sleep much at all. She wasn't even sleeping during the day which is really unusual. What was causing this? Was she getting rid off her very valued day time sleep, surely not yet, please no. But after some research on the Internet we read several stories about kids being unable to sleep, some not sleeping at all for days. Hyperactivity and increased seizures can happen too. Thankfully Faith hasn't had any seizures of any kind but she never really had any anyway. Definitely seeing the hyperactivity, but that is ok as Faith isn't that active anyway and it has been more a good thing than a bad with her. 

So we decided to slow Faith's keppra weaning right down. It is so hard sometimes to know what is going on with Faith. She thankfully had a couple of sleeps today which is unusual so it is good we are stabilizing her wean. Faith also has a UTI again at the moment so she is on nitrofurtoin and that upsets her tummy, so I think that is contributing too. There are some wonderful positives, she is making more sounds with her babbling and trying to communicate more, she is attempting to reach for objects more than before and doing lots of copying. Amongst some dark clouds is some beautiful specks of sun of what is to come.