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!

Make time for yourself!

As a mum it is hard to make time for yourself but at last I have decided I do need time to myself too so that I can have different topics to talk about with others but bring something back into my relationship with my husband too. By making time for me, I think I will be a better wife and mum as I will be able to have more focus and I am already feeling more organised. My head space though still jumbled is sorted into a pile of different jumbles. Making time for me gives my brain something else to think about and if Faith is having a bad day it also gives me something to look forward too and escape to, even if just for a few short minutes every now and then.

My first step was getting some exercise something that hasn't really existed for me for a long time, except for the occasional walk, I wanted something more so I have started swimming in the morning. There is a indoor pool not far from our house so I am only out for about 45minutes but those 45 minutes are precious and important. I only go during the week as it fits better to our routine but I love it. I have conversations with different people and when swimming I think of different things or nothing at all. Sometimes I get great ideas but most of the time I just like the repetition of up and down the pool. I have been going now for 5 weeks or so and my stamina is increasing and I can swim more laps. Apart from my swimmers falling apart and learning the hard way, why I should wear goggles - I couldn't see after three days of opening my eyes under the water, I just like looking around while I swim, but the cloud I saw for hours after ward and the stinging pain, goggles became a urgent requirement. Swimming has been a wonderful way to start the day.

Another way that I have found for me for something at home any time of the day or night, is to begin reading a book called the The Artist's Way - A 12 week course in discovering and recovering your creative self, sounds exciting, I'll keep you posted on my journey. So amidst the craziness of my life I will keep remembering to make time for myself too.

Making sense of the craziness!

Sometimes do you look back at the past week and say how on earth did I make it through? Well, last week was one of those weeks for one reason or another. Each day I felt like I couldn't make it through but I did and I am at the beginning of a new week full of anticipation and expectation of something better than the last week. So I wrote the below when I was feeling extremely low and for some reason since I was in the midst of the just keep swimming week I couldn't publish it. On top of everything last week I got the some sort of bug and have been quite unwell, maybe induced by stress, who knows. The last few days have been better, days that plod on instead of dread each moment forward. I still feel unwell but I don't feel as lost as I did.

Last week,
 
What do I want to say? There is so much but putting some thoughts into words sometimes eludes me, if only I could print my brain, it would be all the better. Today I was reading a blog about pre-toddlers and how they waddle around and their creative interpretations of the world. It also spoke of their transformation from baby to toddler and how amazing that is. It is amazing to watch a baby develop reaching the 'milestones', learning to crawl, exploring their world and climbing on everything. Sounds so exciting. As I looked for activities for my dear one and I find one here and there I get excited about showing Faith new things and activities. I feel like I don't get to show her that much sometimes with all the sickness and the constant feeding and teaching about food and the physiotherapy. I want to show her things, how much fun she can have. Help her learn to touch and pick things up. I'd like to feel like I have achieved something in a day with Faith so I now have a chart for the week outlining a daily activity, sensory, building, touch, quiet activities, lots of fun things and I aim for one fun planned activity a day at least. I am excited about having a plan so that when I am a bit overloaded I can just read the plan. So I am just trying to find the activities where I can see Faith explore, learn and develop. She is limited by not being able to sit up or crawl so I am really trying to be her hands, her legs but it is hard and I do find it tricky.

Just for a moment think how your toddler plays, running or crawling around, discovering new things. How does it feel to you? But to me, I see what I at this point cannot have and wonder will it ever be, what does it feel like, but I must hope that it will be, and for now this is my task. I don't know what it is like to have a toddler though I have one, a very special one whom I love dearly, I am just trying to make sense of my world and what it is and what it is not, but I am not looking for pity I am just trying to make sense of this craziness and this path I am on! Of course there is joy and that's what I must hold onto.

Pets as Therapy - Guinea Pigs

When I say pets as therapy, what is the animal you think of? The first animal that comes to mind for me, is a dog - loyal, faithful, man and woman's best friend but to me it is my 7 girl guinea pigs. They talk to me, they beg for food, they announce themselves when I am in the kitchen, hehehe, I want food too, feed me feed me. My piggies all have different personalities and they are all unique. Not only do they mow my back lawn, they eat my veggie scraps (and yes I spoil them with lots of other yummy food from the garden and the store), they welcome me when I return home, they like to party at night so when I am up with Faith they are there wandering around in their house ready for chat and a veggie. They are clean and I can teach them tricks so to me I think guinea pigs are great pets as therapy. 

Faith learnt to squeak from hearing the piggies squeak and I must admit I thought her first word would have been pig pig! lol Faith watches them pop corn in the back yard, run around eating and munching all day and then sees them resting in their indoor house. We incorporate the piggies into our lives and when I pat them they gurgle in pleasure (like a cat purring) and I love that I can have them around for Faith to enjoy and learn about having and caring for a pet.

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.

Resources for becoming NG tube free - Cups and Spoons

It took us so long to get together all the different resources we used to help get Faith off her NG tube and to keep her from going back to it. We took her NG tube out on the 29th November 2012 and below is some cups, spoons and plates that is helping us in our journey of staying NG tube free. We have a amazing speech pathologist who supports us and provides us with so many of our resources. She is such a blessing to us. We have modified the spouts on most of the sippy cups and removed the valves so she doesn't have to suck as she isn't able to do that yet. Her favorite for a long time was the NUK cups in different colours, yellow, blue and green. We are still struggling to get Faith to eat from a spoon but we are working on it. She used a spoon for the first few days after we took her NG tube out and moved onto the sippy cups maybe because the spoon used to much energy and drinking the blend allowed her to get more energy and not use as much to do so.