21 Days of Gratitude - Day 11 - Family Outings

We headed back to Brisbane for Faith's check ups and overall it went really well but the highlight for all 3 of us was our trip to Southbank. Beautiful weather for those couple of days. We are so grateful for Faith's doctor's and the ability to have access to such supportive and knowledgeable doctors. We couldn't get better treatment for Faith. The Brisbane hospital is so very close to Southbank, it is our sanctuary from all the appointments, the questions, the assumptions, at Southbank we are a family out to explore. We always manage to visit our favorite restaurant where the manager has shared our journey from Eleanor's birth as we have gone there for meals and we each share a bit of our lives. Can't forget our new thing of visiting Max Brenner Chocolate Shop. Faith loves being out, watching the people, seeing new things and having a break. This trip we went to the QLD State Library. We aim to have some fun adventure together so that we all have something to work toward particularly Faith after being poke and prodded.


Here is some pictures from our Southbank adventure

Beautiful gardens and walk ways

So many contrasting colours

Our favorite chocolate shop

Attractions of Southbank

Just some random nattering!

What a lovely day we have had! I love spring, trees and flowers are coming to life and the air, the air is scented with so many scents, I just stand there and breath it in. I look around and happiness and peace just fills my veins. I don't want to move, just stand there absorbing it all. Faith in her pram watching me garden, rearranging pot plants, planning future plants and soaking up the warmness of the sun on hidden winter skin. Faith has a snooze and I continue my wanderings in the garden and unpacking the random box when I dare to leave the sun and fresh air. After Faith's snooze we head to Bunnings to pick up some paint and yes, some herbs and veggies for the garden. Faith lies on the blanket looking out at the ibis flying overhead and the sweet songs of the wrens and willy wag tails.

Faith hasn't been herself since the blood test yesterday, she has huge bruises on her hands and looks tired. She has been vomiting more and this concerns us, she has been sweating and quiet as usually she chats and chats. We decide to do a test to see if she has the indicators of a UTI, we haven't done a catheter for several weeks and her wee smells and it is cloudy, the test indicated that she has a UTI, poor Faith. Amidst it all she is so brave, smiling when I be silly to entertain her and waving hi and bye to her grandparents. When we lived in the other house we were stuck inside as it was too hard to get Faith outside. Now we can lie her on the rug and she can watch the dreamy clouds and the noisy Rosella's begging for food. We garden and show her seeds and plants that have delicious scents, it makes her pale face smile and giggle. Faith is so much better than usual, the blended diet keeps her from vomiting too much and helps her maintain her weight as before when she was on formula feeds entirely, she would always lose weight.

Also, we haven't seen any neuropathic pain in a long time so maybe the complex regional pain syndrome is under control which is such a blessing. Things that make Faith giggle at the moment are things like everything beginning with the letter 's', it just makes her giggle and giggle. I love it. Now, we just need to get on top of the this latest UTI. Much better than this time last year when UTI's were an ever present trouble. Now UTI's are months apart. Now to start the antibiotics! 

The fun in the garden!

A rose from our rose garden!

We even have a lemon tree!

Instead of our days spent inside the lounge room, wishing we were outside, we spend many more minutes and hours on the grass looking at the sun, clouds and the birds flying above, we watch the wrens busying themselves in the garden and the penny lizards scurrying around. There are dragonfly's and butterfly's, oh, how I love spring, new beginnings! We both get much more fresh air and sun, I think we even go out more since it is easier to get to the car. 

Faith has more spaces to play and look at different things. We have only been here 2 weeks and we have planted potatoes (she thought that was hilarious when digging the holes), corn seeds and lining the edge of the garden are pots with herbs and hopefully soon to plant some seeds of marigolds. I enjoy companion planting. It always seems to help and make the garden full smells and more textures. Faith lies on the rug, watching everything we do, other times she sits in her pram observing the world and taking it all in. 

The first morning in our new house when I was gazing with such thankfulness at the garden, a little blue wren landed not far away and was singing a sweet song. I wish I had my camera out then.

So many different varieties of flowering shrubs

We have seen a willy wag tail around and these are my favorite birds, they always seem to make me feel that everything is going to be ok, I don't know why, they just do. We have since discovered that this little willy wagtail lives in the big cool, leafy tree outside our window. The first night in our house and Eleanor was unsettled I think we woke him as he started singing and now each night he sits sleepily in his tree singing the night away or singing in his sleep. What a beautiful night song he has! During the day he lands near the window and sings his day song and we all admire him. I thank God for such blessing as the willy wagtail and his song.

Loving the raspberries

We started digging through the overgrown tomatoes and weeds and we found raspberries, I at first thought they were strawberries but tiny and then I saw the white flesh and had a taste and it burst with flavor, now Faith and I go outside and I eat the raspberries and she looks at me with intrigue of eating from the garden.

A Catch Up!

The last two weeks have been so crazy, the wonderful news is that we have sold our house. We are just waiting for contracts to be exchanged and this will happen this week. Selling and buying a house is huge. We negotiated for 2 days selling our house and about a day for the house we plan to buy. I really can't wait, we all can't wait. Our new house is low set and we can go outside with ease and going for a walk and playing the garden can be part of our daily routine instead of just rare activities. I am trying not to get too excited but too late, I am. Of course challenges will still be present in our lives but it will be made easier to bare. Faith's bedroom is know where near the kitchen and main living areas so we can let her sleep or rest happily without her being curious about what is going on not a few steps away from us. It is amazing what we grow grateful for, for example, the laundry is just outside the back door and Faith can come with me and help me and part of normal household activities. As with our current high set house it isn't possible for me to take Faith to the laundry I usually wash at night or when she is asleep. I tried the other day and she got excited and started poking the washing, I just couldn't manage it. Her face filled with disappointment just over going downstairs. We will miss our neighbors so much, the older couple on one side have been so wonderful to us. They are part of our lives here and I plan to include them as much as possible from our new house. After all, it isn't that far away.

Purple elephant that vibrates

So apart from pest and building inspections, signing contracts, all those fun activities with buying and selling a house Faith has been progressing really well. We have been continuing with learning makaton sign, oral alerting program and oral stimulation program. The speech pathologist made a progress sheet so we can record daily patterns, how well certain things are received and so we can make changes as we go. We have this little purple elephant that vibrates and we work up from her foot to her face to get her use to different sensations. It is supposed to help wake up muscles. Sometimes she likes it sometimes she doesn't. Our aim is to remain consistent. Just like with brushing Faith's teeth. My husband brushes his while we help Faith with hers. She gets quite excited. We are also teaching her to spit and Faith thinks it is so fascinating. I do find it a challenge to include it all in our day. I just have to keep reminding myself this effort now will help Faith in the long term. She is doing so well with it. Her new word is home and when we come into our street she says home. It is so cute and wonderful to hear and know she is understanding more.

Stepping stone clouds

Yesterday, the sun was shining and the breeze a little icy but all three of us were home so we got out the teddy bear picnic rug placed it under a tree and sat back and enjoyed the warm sun on our pale skin looking up at blue skin with stepping stone clouds. I felt my comfort level rising and just being outside, with Faith looking up into the palm trees watching the movement of the breeze through the trees, she was happy. I just want her to be happy and the simplicity of being outside made her happy. We all lay and sat out there for quite a while and it was such pleasure. 

It is nice in a way to deal with 'normal' toddler things, Faith is teething, and oh, it is not nice. Her little cheeks are read, she is drooling, the hands are in her mouth. If only she would eat and give those gums a helping chew but not as yet. A couple of nights ago from around 2am she just couldn't sleep, nothing would help, she just whined and was sad. What a long night. But isn't it a relief that it is teething and not something sinister. As it is always there as the first thought, is it a shunt malfunction or is it a UTI? In this case it is not, yay! 

2nd Birthday Party!!!

What a crazy few weeks! I have been trying to get back here but haven't had a chance. Faith's birthday party was a delightful success. It was just the way I imagined it to be. She watched and watched. The kids played, decorated cupcakes, ate and ran around. I even made a cake, I haven't done anything like that before but I am happy how it turned out. The mold of the cake was the same one I had when I was little girl. I borrowed it from my mum. Nothing like a homemade chocolate cake and it was fun. It was really wonderful to celebrate her birthday!

Faith's birthday cake

So many care! What blessings! An invite, that we made and her birthday cards!

Planning Faith's 2nd Birthday Party

This week Faith turned 2. Wow! Last year on Faith's 1st birthday, I couldn't celebrate, yes I am blessed for her arrival but to me it was a reminder of that day my baby was taken away from me, the day I could no longer protect her from the world, the first time we were separated and I couldn't comfort her first tears or see her first sleep or even feed her, yes it still hurts. She spent her first 6 weeks in neonatal intensive care and I couldn't stay with her. I spent hours and hours a day by her side but felt I didn't know her, I didn't know what happened during the night I wasn't in control of feeding or anything. I felt I had to fight to be involved. Faith was very sick so I found Faith's 1st birthday a day full of sadness and emotions. It didn't help that she was sick then as well and it wasn't until the end of 2011 that we started living again and going out, doing fun things, being a real family, it was because at last she is well. Praise God!

Faith's goodie bags for girls and boys! Such fun!

So here we are, Faith's 2nd birthday, this year I feel happier. My darling is well, she still has lots of catching up to do and bad days, but she is gaining weight and interacting with us. There is so much more hope and happiness. She generally sleeps through the night and has a long day time nap, she is settled and generally content. My mum said to me oh think about 2 years ago and her wonderful arrival but I said, yes it is wonderful to have Faith but I don't wish to think about that day 2 years ago, I want to concentrate on how well Faith is now and how beautifully she is doing now. So, we decided that we should celebrate Faith's birthday and tomorrow we will be having a birthday party for Faith. We have invited her little friends and their families. I made little cup cake invitations, I had so much fun making them. We have planned yummy food, honey joys, chocolate crackles, fruit, mini sausage rolls and party pies, spring rolls, veggies and dip. While the parents enjoy chatting, the kids are going to decorate cup cakes. When I was thinking about what we could entertain a bunch of near 2 or just over 2 years old, I thought about what would be good for Faith. Food, of course. We are trying so hard to teach Faith that food is friend not foe so why not decorate cup cakes. Lots of kids playing with their food. Perfect! We will all sit outside on the deck, where we can hose the deck off when finished and maybe the kids, just kidding.

I must admit that even through all the fun preparing decorations, food and invites, I think there will be those tiny, fleeting moments when I see the other little ones sitting up, crawling and walking and long for Faith to be able to do at least one of them. I know she will get there but it doesn't lessen a tiny bit of longing for my little one to sit up, crawl or walk.

Some great cheap items for Faith's goodie bags

It has been really fun preparing. Faith and I made the honey joys yesterday and today we are making chocolate crackles and I am going to attempt to make a doll cake. Never made a cake that big or fancy before. We went shopping for items to put in Faith's goodie bags that we will give the kids when they leave the party. It is going to be fun! When I was growing up my mum and dad always had parties for me. I remember the pool cake as I loved swimming. My mum and dad made my parties so much fun and so special. When I was little I would get so excited and then end up in tears as I got so excited. I wonder if Faith will be like that? Anyway, what could be better than celebrating such a precious life!

A drive in the country

I love a drive in the country, I love stretching my eyes, discovering new things and being able to talk with my husband and spend time together as a family. We have always gone exploring exploring old places and finding new and up until now it hasn't been a regular activity as Faith has been too unwell and didn't travel well. But at late she has been better and we have been much more confident, and when the oxygen cylinder appears she says car car, the arms go up and she is ready to go out. As I am putting her in the car, organising the oxygen bottle and doing up her seat belt, she waves her hands, and looks excited. I love it. This particular day it was raining, one of those days that I usually snuggle up inside and don't venture out. We had to cancel our normal Sunday activities as there was so many coughs and colds around we couldn't take the risk of Faith getting sick. So out on the road we went. Packed food, a thermos of tea and it was time for adventure. Faith was ready for a sleep by the time we left but fought sleep as there were to many trees and puddles to look at and music to sing to. She read her book, stared aimlessly out the window and told us stories of what she saw, though only some clear words came out.

Of course there is always a little drama, I peered at Faith, playing peek a book as we drove along and said to my husband, Faith's NG tube looks longer than usual but I think it was the angle so turned back around. Later, I played peek a boo again and Faith giggled and smiled this time I said to the other half, ok you need to stop, too late I just finished pulling the tube out as it Faith has carefully pulled most of it out already. Faith had had her lunch tube feed, so I packaged up the ng tube and started the car and off we went with a very happy Faith with no NG tube. She looked quite happy with herself.



Let me share our drive in the wet, rainy and misty country....

Nimbin Rocks

Clarry Hall Dam

A secret place near Clarry Hall Dam

Blended Diet...the beginning

So we decided it was time to start the blended diet, we decided to start with a baby food that would go smoothly down Faith's tube. Chicken and sweet corn baby food sounded like a good start and I had it sitting in the cupboard. We knew from when Faith ate last that she could tolerate most fruits, vegetables and meats. I just added some zymil milk to make it less thick and it went down with ease. As we are just checking Faith can tolerate different foods we are leaving all the formula feeds alone and just changing the way we give the zymil milk. Even just after a few days we seem to have success as she has less sweating during the day and has reduced vomiting. The biggest challenge is that Faith has overnight feeds and by the morning she vomits shortly after rising and then it goes from there with more vomiting and more distress each day being different. We found it tricky trying to figure out the best way to move forward.

A couple of night's ago something really annoying happened, we started Faith's overnight feed as usual and when we checked it some hours later the second cap had popped and thus the feed had leaked out through the tube and onto the sheets and through the mattress. So frustrating but it did prove something. Faith slept longer, she woke happier and didn't have vomiting straight up, she tolerated some blended foods going down her tube. The next morning when her feed had been running all night she vomited as usual and couldn't tolerate food for a few hours. So last night we ran an experiment we gave her some blended soup, the first go with the Vitamix, that we had for dinner.  Later on we gave her a big formula feed with no overnight feed. In the morning, she slept until 6:45am, woke happy and tolerated blended food down her tube and just managed to cope with the formula a little later. She has had reduced sweating, no vomiting so far, is very happy and more inclined to interact with people. 

This is exciting. We are just in the early early days of the blenderized diet and we can see a remarkable improvement. By the way, our Vitamix Blender arrived and it is just as good as we have been told. I love it. But what I think is most amazing and special is after the last few weeks of Faith's increased vomiting, she is better today and I will grab every moment that is good as they so precious, those squeals of delight, dancing, covering her face because she is shy and wanting to play and interact, these are the days I love.

Treasured Moments

It has been a hard week, a week I thought that wouldn't end and Faith's vomiting didn't seem to end either, but yesterday there was a light. Faith woke at just after 7am which is amazing as she always wakes around 5am and is unwell. What a lovely sleep. She woke relatively happy too. We ate breakfast and she was willing to play with food I would rub food on my lips and then on her lips and she was quite happy with that. No spoonfuls yet but it is a start. We even fed the animals together and I pushed her around the house in her pram. She loved it. When I reverse I say beep beep beep and she chuckles. So cute. She did have her usual vomiting and it distressed her greatly and sounded terrible. It threw her a lot which is quite understand and after her rest and feed she woke so happy. She was waving her arms around talking at her loudest voice. We were cleaning up the house as we had an open house, hoping someone would buy it bad sadly didn't. We headed out for a while and apart from a tantrum in the car because we stopped to get petrol she was dancing in the car, chatting and having a lovely time.

My favorite part of the day was in the afternoon, Faith had had a long sleep and she was wearing a pink hoodie and so was I. She put her arms up, which meant I want cuddles with a warm smile. I picked her up, she clung to me instantly and she looked up at me with her long eye lashes and big blue eyes and we went outside. I had some bubbles with me and started blowing them over the edge of the deck and she put her hands out to pop them and giggled. We did that for a while, but then, we just stood outside watching the rain dribble down and make puddles in the backyard hence the picture of the duck floating in one of the many puddles. Every now and then she would stretch her arms out to try and touch something and she would then bounce around with such happiness and contentment. I thought back over the previous week and felt so amazingly blessed for these moments. These are the moments we live for. Faith was happy, she had less vomiting, less sweating and was so much better. I then put both our hoods on our heads and she reached for mine and she said hat hat and then pulled hers off. We spent the next 40minutes sitting on the swinging chair with her chatting and dancing while we sang some songs and enjoyed be snuggled up together on a cold rainy day. I didn't want the moment to end.