'Just keep swimming'

I wrote the below yesterday when we were having a bad day, it sort of continued into today and I just wish it were over, sometimes are so hard and feel I like I won't make it through but I know I will I just got to keep pushing on. So here it is, one of many days I don't really want to remember.

I really loved watching Find Nemo and loved how Dory would say 'just keep swimming' and it makes me feel like 'just keep swimming just keep swimming' and I will get there eventually. I feel I just need to write. Today has been a hard day. It started last night, when I thought it would be a good idea to give Faith a kids probiotic, which I do nearly every night but last night I added a little more than usual to her blend (as she is on antibiotics) while it was warming and I didn't see but it had formed little clumps within the blend so when I pushed Faith's blend through her tube, it got stuck, but it really got stuck, I tried all the declogging ideas I could think of. Nothing worked so I had to wake Faith up, pull out her tube and and put down a new one. This has NEVER EVER happened before and believe me, it won't again, I felt like a failure, angry that I could be so stupid, all those type of feelings. New tube down and Faith wide awake and lies in bed annoyed that she has been woken up. I don't blame her, I felt annoyed at myself. The old tube wasn't savable and now I was left without a spare NG tube. I went to bed slightly sadden by the whole event, hoping a new day would bring a renewed strength.

The day just didn't start right, Faith was sweating from yet another UTI, we started another round of antibiotics, different ones this time. Faith was irritable which was understandable but I had to keep entertaining her so that she wouldn't realize that she felt sick and then vomit the antibiotic. Oh, why is it so hard today, the poor little thing was wet all over and not happy. After her formula feed in bed I thought I might go quickly into town as I needed a sugar bowl (another funny story for another day, let me just say, I am so over SUGAR BOWLS). As we were driving down a hill on a busy road, Faith starts looking like she will throw up and she did, which in itself isn't a biggie except when the NG tube comes out her MOUTH! I can't believe it! Some tactical moves later I am on the side of the road running to the side of the car, swing open the door and pull the tube back out through her nose. I am not parked in a particularly good spot so I make sure she is ok and head to a car park to sort it. My brain is on overload, all I can think of is I need to put it back down and my husband isn't able to help me today. Telling myself I can do this I can put it down I need to be able to do it on my own.

After we have wandered the shops I might say not really that happy, I have my sugar bowl and bonus milk jug and head to the car with a very sleepy Faith, also trying not to let her go to sleep as her oxygen was at home since we are allowed awake outings with out it. I have had enough, I head to the car and on the way home she looks like she is going to be sick but isn't but I am still overwhelmed by my disaster of morning, but it doesn't finish there. It is Faith's feed time so I rush inside and put the air con on as it so hot and organise myself. I put the NG tube down, encouraging myself on, praying too. It is down, I aspirate, no aspirate, I can't beleive it, it must be the right spot, I think it is but she is so hungry there is no food left in her tummy. But I have to be sure so I get her to drink some water and still nothing. I am going to have to pull it out. Several attempts later after Faith deciding she had had enough, she continually pulled the tube before I could get it in and then she'd just vomit it up. It wasn't working, I called my husband and said I need some help and he came home and we succesfully put it down, just having him there to hold her head and steady her made the difference. Definietely a two person job. Faith is now fast asleep and been so for a few hours and I am trying to collect my thoughts and re center myself. I am exhausted!

We have been working on Faith's feeding program, oral alerting etc for the last several months with the end goal being Faith eating purees again. But after today, I realised that I need to put ALL MY EFFORTS into getting Faith off the NG Tube, I know we have been putting alot of energy into but I came to realise even more that this has to be our MOST important priorty as she can't continue with it and we need the NG TUBE TO BE GONE. It is hard and I must press on!

I feel like I don't fit in, but it's ok!

Some days I get up in the morning and I am ready to take on anything and manage whatever my day throws at me but every now and then I have a succession of days where it all is just so hard. My brain is on overload, what to do what program should I be doing, what am I missing, am I getting enough food into Faith, all those sorts of things, or the simple ones like, I don't understand! Faith might be well or she might be having a string of tough days too. My emotions get the better of me and as much as I try to center myself back to normal and control my thinking (through prayer, meditation or journalling), tears come or just a sense of I don't feel I fit in or where is my place? Don't get me wrong, my husband and daughter are so much a blessing to me and I wouldn't change a thing. I just sometimes feel I don't fit in. Faith is now over two and getting over that baby stage and people start mentioning things to me, such as oh, she is so tiny, is she really two?, oh she must be so sick because she has tubes. So, even though I can get past comments like that, I find it hard to find a place that we fit in. I find internet based forums are a amazing place for understanding and support, where they understand and get the head space I am in. Faith is still gaining her strength which means she is unable to sit up unaided, or crawl yet. I say yet as we are making progress and I know one day Faith will get there, it is just hard, I don't seem to fit into mother's groups or play dates though I do have some friends who really try.

But the other day when I was shopping the shop assistant said to me, she hasn't got her oxygen on anymore, she continued to tell me that she understood how big an achievement it is to lose a tube as her son has cerebral palsy and was on oxygen for a while, what encouragement I felt, instantly better, I wasn't alone in this town there were other mums who really understood. Another nice comment a week or so earlier was the check out lady at Woolworth's, she said oh, isn't she getting bigger and looking so much better. People do notice they just sometimes fail to say the good though instead pointing out the obvious  for example, the tubes, how little she is. (She really isn't that little, seeing Faith in her standing frame, she turns from a baby on the floor or in the pram into a little girl, ready to explore the world) And today, sometime special happened, I received a email from a friend who started out the email saying she was worried what she was about to tell me was going to make me sad, she proceeded to tell me that her little girl had started to crawl and that she instantly felt grief for how I must feel seeing her 8-9month exploring her world and my little one couldn't yet. I wasn't saddened by her email, I was touched with happiness as my friend was trying to understand what grief and sadness I may have felt but it was the opposite because she had thought to email me and tell me before I saw her and her little girl. It was the thought. She made me feel special and that even in a unconventional way I do fit in and it is people like her who try to understand that make the adjustment so much more the easier. So, in conclusion, I might not fit in the 'normal way' but it is ok!

At last a local Occupational Therapist

Since last December 2011 we have been on a waiting to list for Faith to get assessed to see if we qualify for funded occupational therapy. We have had meetings at our house, filled out paperwork and then a month or more a go we find out that the funding for this program has been axed so no chance for OT services. How disappointing! But later are told that this state department partly funds another organisation and they are able to send some clients there and they have OT services, but yet again another waiting list! 

In the mean time we investigated private options and eventually got an appointment (when I could get the lady to call me back), the lady was nearly an hour late and I was trying not to let this influence my first impression, when she did turn up, she was ok but implying that we should do lots more use of the ipad, which I think is ok, but Faith needs to learn other activities not relying on the ipad. She did suggest a few helpful things but overall I didn't really feel she listened. This was later proved when after 6 weeks or so we receive her report and her bill and she got so much information wrong, she didn't listen, she firstly spelled Faith's name wrong, all the details surrounding Faith's food aversion and what skills she does have she missed completely. It was rather a disheartening report. Most of the activities she said we should work on she could already do! So not an option to go back. A bit disappointing!

A few weeks ago we got a phone call from the organization that is partially funded by the state government and said that Faith could now receive services from them, yay! The lady sounded really nice and we made an appointment for the following week but something happened and it was rescheduled to last week. It went really well I think. They make goals and then work on them according to importance which is great. We also met their speech pathologist and she is going to give me a hand learning Boardmaker. So I look forward to future appointments to see how they can help. Our biggest goal is to help Faith learn to grasp objects and increase her skills with her hands. So we shall see!

Yay for the physio! Progress!

I have been trying to get to the computer to write a blog for days and it just never seems to happen something catches my eye or I forget what I was doing, and other times I have the blog post all written ready to print out of my brain then other days my brain is nearly on overload so I can't seem to write anything. Even when I am pressing escape escape and my brain isn't responding. At last I have few moments while Faith is having her one sleep of the day. I am composing a list of tasks I need to achieve today and more and more keep getting added but I decided to just stop for a minute.

We are thankfully just plodding along, it is good when days just roll by and there are no trips to the hospital. We are still seeing a physiotherapist every two weeks now and we saw her last week and she said she saw improvement too. Faith's legs are moving more and she can see strength building which is such a blessing, we have seen her strength increasing but usually when we get near most professionals Faith doens't want to entertain just hide and pretend, you can't see me. We have been using the squiggles standing frame and Faith loves it, she holds her head more freely and is so happy. It hasn't been checked by a physio so for the first time packed it up into our updated car and it fits beauitfully, it wouldn't have fitted in the other car and I could even take the pram too so that it great.

The physio was happy with how Faith stood in the standing frame but thought her AFO's and leg wraps needed to be upgraded as they were too small. A sign she is growing. A job for when we go back to Brisbane in November. Faith did amazingly, apart from standing in her standing frame, she practiced rolling, and lying on her tummy. She did really well at all the tasks given to her. It did require some encouragement from using the ipad and listening to music. But whatever it takes to help her along. Life it seems is calming and I couldn't be more happy.

We were sent home with excersies to keep the progress going.

In the standing frame we are to move Faith into a more upright position for a short period of time to get her hips and bones into the right place. We can still use the angled position until she gets use to it as she tends to breath a bit more deeply so it requires her to work harder.

We are also to encourage her to use her arms above her head when in the standing frame and make sure we give even attention to each arm.

Continuing on with Faith's side lying and getting her to reach for objects and then getting her to roll onto her tummy and placing a towel under her arms. Also, get her to move her head from side to side so strength again builds.

Thumb stretches, as Faith has been more inclined to make fists and try and play with fists. She is using her fingers more but we still have to say, fingers, Faith use your fingers. Her thumb is coming across the palm of her hand a bit much so we just have to do some simple excerises to stretch it so she doesn't need to get hand splints. That is now incorporated into play so she doesn't even realize. There are so many aspects to work on but it is working and we are all getting there.

Overall we are making progress and it is exciting! 

What! Another UTI!

We had several days nearly a week or more of pretty good days, not too many vomits. We made three days with no vomiting, yay for the blended diet. Faith had days where she was full of energy and just ever so bouncy and playful, it just made me want to keep playing and not doing any other household tasks but play and play and she loved it. But then a day ago she pulled her legs up and cringed, a bad pain cringe, maybe she was straining, or maybe it was something else. But that night after Faith's bath we decided to do her catheter and test for a UTI. We have found a system that works well for us and we have found it pretty reliable.

We use a multistix to test for nitrites and leukocytes. Both nitrites and leukocytes may be an indication of a UTI and in Faith it generally is. We have found with Faith her urine is clear of these when she is well and then when we suspect a UTI and have done a multistix test we send some urine off to be tested in a lab it usually is confirmed. She usually has other symptoms like the tummy pain, increased sweating on generally one side of her body but sometimes overall sweating. She doesn't seem to get a temperature since we started the blended diet, she doesn't get as much vomiting but still some. I think the blended diet eases her extreme tummy upset though it appears she still struggles with that to lesser degree. Her weight also remains stable which is blessing as last year she would just lose more weight when she got sick at least now we can maintain it.

Since it wasn't that long ago Faith had a UTI we decided to take her to the local GP and he sent some urine off and did exactly what we usually do, start her on a course of nitrofurtoin. The test results take at least 3 days so it is best to treat the UTI before it gets worse. I guess I didn't expect him to do anything different to us but it is good to have his opinion. We haven't had too much vomiting just a couple of times a day and she has been a bit sad and quiet at times but then bounces back at some point through the day to impress us with some new trick or skill she has learnt. Now we just have to wait it out until her body heals from the infection.

My Baby Girl

As I have been unpacking, sorting again and finding new homes for our belongings I found this little poem and I wanted to share it with you.

Baby Girl

She drifted in on a daydream...so full of special charms
A precious little baby girl..to cuddle in your arms
And every time she looks at you...
With wide eyes so bright and your arms will be her haven..and she your great delight!
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