Monday, 30 July 2012

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! 

Sunday, 29 July 2012

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!

Sunday, 15 July 2012

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!

Thursday, 12 July 2012

Sensory Play and Developing Oral Skills

It is amazing when I start reading about things such as the suck, swallow and breathe synchrony how eating not only for its ability to sustain us but its ability to help development, strengthen and speech. The body is truly amazing. Our lovely speech pathologist asked us to read a booklet called Discovering the Developmental Significance of the Mouth, it isn't a long read but it is very interesting. Until we had a speech pathologist that got into the basics of oral development I didn't realize what we have been missing out on. Since our speech pathologist isn't local she telephones us and posts tools to us. We are planning to have feeding and speech sessions via Facetime, isn't technology great! We are starting at the beginning, oral hygiene. Faith is definitely ready for this as tooth brushing has become a fun time instead of a time for gagging when it enters her mouth. We sing brusha brusha brusha and my husband brushes his teeth while brushing Faith's. This is their thing and she looks so eagerly when he heads to the bathroom to gets his tooth brush and hers. She tries saying some sounds and is so curious with it.

Faith is also interested in licking and putting objects in her mouth with our help. At bath time particularly while we are playing games with the crab and duck she opens her mouth and wants to lick and bite on the crab and duck. She won't hold it herself but is keen to have the toys in her mouth and explore them. It is so encouraging! She has not shown this type of interest before and is a great step forward! For months, we get out the crayons and I put them on her play tray and draw things and encourage her to touch and play with the crayons but she just watches. My husband was drawing with her and she just picked one up and dropped it, then another and another. We would hold one out and she would take it. Very exciting! Faith is texture sensitive and the desire to play with the crayons is such an exciting development. She has repeated it lots of times now and has transferred the skill onto different shapes of play dough. Before, only just touching round bits of play dough but now different shapes and squeezing them in her hand, even looking at them. I love seeing her take on different tasks.

I think Faith is enjoying learning makaton sign, when I do the sign for I love you, she smiles and makes cooing sounds. She definitely understands no/stop as the bottom lip comes out and she cries. It looks so sad. We have the signs pinned up around the house so we can use them more and learn more signs. Our speech pathologist suggested a chart with five signs to learn a week and then change so we keep learning more. We received an exciting package in the post with whistles, feathers, straws, reading materials and charts. All the most wonderful tools in helping Faith progress to No Tube! It is good having goals and stages to work through as then my brain doesn't become overloaded and I can sort it into a system to work with. I have been madly sorting and reading so I can make sense of it all.

We have charts to remind and help us with the activities to learn to include in our day for example, an oral stimulation program, things like stroking and tapping of Faith's cheeks, and other aspects like an oral alerting program for the body and face warm up. Lots of great activities to help Faith and we are seeing small changes already. I like having a system, a plan, it gives me direction for the present and the future, just thinking where we were this time last year and now we are planning Faith's 2nd birthday party. Blessings are everywhere, we just need to look!

Tuesday, 10 July 2012

A late night thought!

My day basically started just after midnight and while I was attempting to go back to sleep when the small opportunity arose, I was thinking a lot about faith. Faith as believing in something unseen and great. What is faith to me? Well to start with, Faith, our daughter, is named so as when we found out that she had spina bifida and Arnold Chiari ii malformation it is what brought joy and happiness back into our pregnancy after such sorrow and despair. It is what kept me going day after day of Faith endless trips a interstate hospital and numerous surgeries, it is what gave me hope to continue when days were so dark I felt I could not see. It is when I questioned everything about my life, my self, including my past, present and future. It is moments when I didn't understand and still don't. It is trusting in my God that though I don't understand why my life took this directional change that by having faith in God I can make it through. I guess it comes back to this world being full of sin and pain and until our Lord Jesus returns and restores us pain and suffering will still be happening. I am not in a perfect world I can only have faith that my Lord to give me the strength and courage to face challenging days, to find joy, goodness and beauty around me and to appreciate the little things.  To be so very thankful for my husband and daughter.

Faith had a bad night last night and has had a hard few days we don't know why it just happens. We check all the usual suspects, UTI, shunts, teeth. These are the times I need to rely on my Saviour to help me through and sustain me as I have no strength left and tiredness over takes me. After a long night I went out to morning tea with a friend (I was reluctant as I was tired), it was so refreshing. We drunk tea, ate and talked of our families, we talked of books and it was fun. We shared common interests and I know that it gave me what I needed to continue on through the day, to be renewed, a little nourishment to keep plodding on and we all need that at different times...

Sunday, 8 July 2012

5 weeks on a blended diet!

Wow, what a 5 weeks! We have seen Faith go from struggling to gain weight to Faith gaining 300grams in two weeks. How exciting! She is looking chubbier and is stronger. We seem to have vomiting down as well, once a day! It has taken a lot of adjusting the blended diet and we are still adjusting and trying to find the right balance. We are nearly 50% blend to 50% formula, that is exciting. 

We are introducing more foods for example, last week we introduced flax seed oil, it has so many wonderful health benefits and she is tolerating it, so that is wonderful. Now we have moved onto introducing molasses, we usually introduce a new food over about 7 days as Faith has such a sensitive tummy we didn't want to rush it. We are trying to get more fibre into Faith's diet as up until the blended diet there hasn't been any in her diet due to using formula. It is all about balance. Each night we have been giving Faith a probiotic as we want to get the good bugs back into her tummy. She is waking happier most mornings and sleeping so much better. I am loving having more sleep but I find the more sleep I get the more I want. So funny. Faith generally has a couple of hours sleep during the day too waking only when formula is running so I look forward to having even less formula in her diet.

To give you an idea how our menu is progressing this is what we are currently working on,

  • brown rice
  • wholemeal bread
  • avocado
  • sweet potato
  • carrot
  • banana
  • pear
  • apple
  • apricots
  • full cream milk
  • slow cooked roast beef
  • flax seed oil
  • molasses
Not a bad diet for a almost two year old. We rotate the ingredients but as we are still introducing different foods we are a little more careful. We are trying to increase potassium, fiber and iron but not too much more protein as that tends to make Faith a little constipated. We would like to add ingredients like dates, tahini and barley but will do it slowly. It is so nice knowing Faith is eating real food and we can see so many improvements. There are so many steps forward for Faith this year it is wonderful to see. Faith is showing more interest in food too. Opening her mouth for water and being interested in food when we are eating but still shakes her head when offered but we will get there. Our nutritionists is giving us good advice and support. 

I must admit that my brain is quite full of information and things I need to do and some days I think how am I going to get all things extra things done with Faith so that she can move forward even more. But somehow I do get there, but there are tears on my behalf with my brain being overwhelmed and thinking how can I manage it all but I do, even though I sometimes feel like I am not getting there. A sense of failure does appear but I know it isn't failure as such but more about me wanting to get more done with Faith and reading more so I can do more. Patience and some more patience...

Monday, 2 July 2012

A Personal Note

Friday was my down day, I don't have many of them but sometimes they creep up on me. It can be busy week and I don't notice but sometimes I just crash and life and all its beauties and challenges overwhelms me. It is usually when I am super tired but not always. I felt stuck in my dark day and was struggling to come out of it. There were tears but something drew me to Streams in the desert by Mrs. Charles E. Cowman, after my mum's mum passed away, this book was one of the treasures I got, it is worn and well read and it has little bits of paper with different things written on it and I love reading the pages as I know that my beloved gran read it and found solace and encouragement in the pages. Below is a few excepts from the few pages I read,

'There we saw the giants' Number 13:33

Yes, they saw the giants but Caleb and Joshua saw God! Those who doubt say, "We be not able to go up." Those who believe say, "Let us go up at once and possess it, for we are well able". Giants stand for the great difficulties; and giants are stalking everywhere. They are in our families, in our churches, in our social life, in our hearts and we must overcome them or they will eat us up, as these men of old of the giants of Canaan.

Now the fact is, unless we have the overcoming faith we shall be eaten up, consumed by the giants in our path. Let us have the spirit of faith that these men of faith had, and see God, and He will take care of the difficulties...

We are troubled on every side, yet not distressed; perplexed, but not in despair; persecuted; but not forsaken; cast down, but not destroyed, always bearing about in the body the dying Lord Jesus, that the life of Jesus might be manifested in our body...

Our redemption cost all that God had to give, and everything worth having is expensive. Hard places are the very school of faith and character, and if we are to rise over the mere human strength and prove the power of the divine in these mortal bodies, it must be through a process of conflict that may be called the birth travail of a new life. It is the old figure of the bush that burned, but was not consumed, or of the Vision in the house of the Interpreter of the flame that would not expire, notwithstanding the fact that the demon ceaselessly poured water on it, because in the background stood an angel pouring oil and keeping the flame aglow.

No, dear suffering child of God, you cannot fail if only you dare to believe, to stand and refuse to be overcome...

The last sentence is what stood out to me and gave me the courage and the strength from God to keep on going. Don't we have an amazing God! 

Source, Streams in the desert, by Mrs. Charles E. Cowman 1977

Sunday, 1 July 2012

Dietitian or Nutritionist?

When we saw the gastroenterologist last week she said that she was more than happy for us to try the blended diet with Faith but we she wanted us to have support on the nutritional side. At first we thought we thought we would just consult with a dietitian allocated to us by community health but a few things changed after I talked to her. All we needed was someone to go over our calculations for calories, check that we were getting the balance of foods right and make any suggestions and work with us to get Faith to the optimum health. That is and will always be our goal. But on first encounter, on the telephone, of our allocated dietitian she appeared to want to take control of our situation already starting to boss us around and telling us to change things. She didn't even know us or have a history. She was assuming Faith had problems with protein and allergies as that is why we would take up a blended diet. She wanted to see how everything was prepared, to take photos, she wanted to know everything, she had the book Homemade Formula Handbook too so I said I used it as a base but it didn't seem good enough for her. She appeared to be indicating that I wasn't preparing foods correctly, this all happened in the matter of five minutes. I was not impressed. I wasn't sure what our options were so I made an appointment and after I got off the phone I felt I had made the wrong decision so I cancelled the appointment. 

I was talking to my mum and she mentioned that a friend of hers knows a nutritionist who is wonderful and she is also a lecturer at a university and is very acredited in her field. She has a private practice about a hour away from us. I spoke to her on the phone and was very impressed. We got on really well and though she hasn't had direct experience with a blended diet she was more than confident she could help us and support us in our journey and that is what she said support us in our journey, how good is that! She said she would discount her price for us. As it was Friday she said have a think about it over the weekend and get back to her the following week. I felt so much better about this lady and after some research and reading about her qualifications on her website, I thought it would be a good match for us. I was excited. I would cancel our other appointment with the dietitian who just didn't understand our needs and make a appointment with the nutritionist who understood our needs. I wanted to understand what a dietitian and a nutritionist was so I did some research on the interest and this is what I found.

What is a dietitian and a nutritionist?
Accredited Practicing Dietitians (who sometimes call themselves nutritionists) are accredited by the Dietitians’ Association of Australia. To qualify as an APD takes a minimum of four years’ university study in nutrition and dietetics. It’s the dietetics qualification that separates a dietitian from someone with a degree in nutrition science alone. Dietetics is the study of how food and nutrition are used to manage or treat health problems. For a qualification in this area, dietitians need to have supervised experience working with clients.

Nutritionists or nutrition medicine practitioners need a qualification that complies with the the Australian Natural Therapies Association – generally a degree such as a Bachelor of Health Sciences (Nutrition Medicine) or a three to four year Advanced Diploma of Nutrition or Nutritional Medicine. Naturopaths accredited with the Australian Natural Therapies Association can also offer nutrition services if they’ve majored in nutrition – typically through a degree such as the Bachelor of Health Science (Naturopathy).

Our appointment was on Wednesday and the rain was bucketing down and it wasn't a nice day to go out but out we went and I am so glad we did. The nutritionist spent just over two hours with us going through Faith's medical history. She was so thorough, moreso than most health professionals that we have seen before. We arranged to meet the next evening to go through her thoughts. The next evening we could see that the nutritionist had taken a lot of time to go through what we had told her. Her first thought was to make our lives easier by suggesting a computer program called FoodWorks , she had it on the computer to show us. The program would allow us to enter our blend ingredients and would show us information on the nutrients in it and what we need more of and where we didn't need so much. We could also enter the formula information to get a more complete picture of Faith's diet. It would guide us and save me spending hours working out the nutrients and calories and it is all to Australian standards. We could also print information and then be able to show the doctors. She would guide us and help us understand more. It was exciting. As with everything with Faith, we take it slow, she suggested moving to Flax seed Oil as it has better omega 3s so that is what we were starting with. Other suggestions included, molasses, more red meat, more grains, those type of things. Really good helpful advice. It is really important to have someone like our nutritionist to share the load and share the journey.