The hunt for a standing frame & Phyiso

In the few months we have been looking, researching and trialing standing frames. Standing frames are not funded by the NSW government and as the one that Faith requires are around $6,000 we have been approaching charities and organizations if they are able to donate part of the sum we need to buy Faith's standing frame. We were recommended the Squiggles Standing frame, we have trialed it locally but sadly the company we used didn't have all the bits and pieces and though Faith got to have a quick stand in it it didn't fit her properly and thus we couldn't borrow it to have a go. The day Faith trialed it we were at early intervention and no other babies came so we had the room to ourselves. To keep Faith distracted bubbles were blown around the room and we lay her in the Squiggles stander, it is a beautiful lime green, like her pram. As we standing was slowly inclined up I was wondering what Faith must have been thinking. I think it must have been an amazing sensation for her. As when she got her balance and looked around she looked happy, she burst bubbles and smiles. I think it would be so wonderful for Faith to have a standing frame. After seeing the orthopedic surgeon last week we realized it was more urgent for her to have a standing frame, Faith's hips need to have that pressure of standing to make the muscles and bones work. As we don't want to cause more problems by not getting her up we will try to get it for her as soon as possible. It would be so nice to see her upright. She looks so big and tall not a baby anymore but a toddler. I do sometimes find that hard to take in, as she still isn't able to sit up by herself yet or crawl, I need to keep reminding myself she is a toddler.

We have a physiotherapist in Brisbane but we only see her when we are clinic, she is there to give us guidance with equipment and spina bifida related issues and she is wonderful. Since we don't see her weekly it is hard for her to help us with week to week issues. We saw a local physiotherapist locally but we don't seem to be getting anywhere and I am just not happy with it. I keep asking how to help Faith progress further and get the same answer from our local one. Last week I was talking to friend who also has a child with special needs a lot younger than Faith. She was talking about how she sees a private physiotherapist and what wonderful progress they have made. She was telling me about the aspects that need to be achieved before her son can sit up and I realized no one had ever told us that. After talking about it, I realized there is so much more we could and should be doing for Faith. The last months she has been well and she is getting stronger so now is the time to help her get stronger by seeing a physio at least weekly so Faith can learn to roll and sit up. It has given us something to think about and make enquires to organise something similar for Faith. I was so grateful to my new friend for sharing this.

We can see that we need to organise this standing frame as soon as possible. It does take time to order it in but understandably the company won't order it in until we pay in full. It is just hard, knowing our child needs this piece of equipment urgently and not having the funds to do it. So, I have written letters, including a letter from Faith, information on Faith's conditions, received support letters from physios, OT's and doctors and sent them off. We were so excited when we received our first donation, now safely in the bank. So now I just need to keep sending out letters and contacting organizations until we have the amount we need. We have found ways to reduce costs, we are hoping the Stingray R82 (pram) play tray will fit the Squiggles Stander that takes off about $700 and our physio in Brisbane has recommended a different head support so we are making little tweaks here and there. My big goal is to have the money by the end of July so we can order it and hopefully it won't take 3months to get. 

When we were in Brisbane we tried out another standing frame, the Jenx Supine Stander and though it was a lovely standing frame and cheaper it didn't meet Faith's needs so back to the Squiggles. The physio thinks that the Squiggles is the way to go. It is so hard asking for money as we would like to organise it all ourselves but with all the extra expenses it just isn't possible. We understand that each community group, charity and organsitaion has so many requests made and they try to help as many people as they can so we will just do what we can. So let the fundraising continue.

Learning about Makaton Sign

I have always thought about learning sign language as I thought it would be a useful skill. I thought about learning it when I was at university but it was one of things that I didn't get to do. I have seen staff at early intervention use it and wonder if it would be of benefit to Faith but no one had mentioned it so I didn't think that much of it. Then I learnt a few signs at early intervention and tried using them with Faith and she responded with curiosity and interest so when we were in Brisbane and talking to the speech pathologist I mentioned it and she introduced us to Makaton sign.

What is Makaton Sign?

Makaton is a language programme using signs and symbols to help people to communicate. It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order. With Makaton, children and adults can communicate straight away using signs and symbols. Many people then drop the signs or symbols naturally at their own pace, as they develop speech. (sourced from The Makaton Charity) 

Faith's speech is slowly developing, she is saying more words and trying out more sounds but we have sort of reached a plateau so the speech pathologist thought that by teaching Faith Makaton sign we would be able to use a different cognitive pattern in Faith's brain and help her speech along. She gets so frustrated when she isn't able to communicate what she wants or needs so we are hoping that teaching her Makaton she will be able to communicate more. She loves watching the hand movements and she seems interested. It will also get her hands moving more and improve her motor skills. It is exciting that Faith will be able to communicate more in time but also to have something else to think about and entertain my brain I think is good too. It will provide insight into Faith's mind and who she is and what she wants to say. It will also provide a strong foundation for early literacy and continued language development. 

So in the last few days since we have been home we have been watching The Makaton Vocabulary Auslan Edition CD on my computer and it has been showing us what we need to get started. Participating in a course would be better but this is the next best thing. Shortly we will have the book to go with the CD and can learn more. We are starting really simple and very slowly so as not to overwhelm Faith and us. We will be really patient with her and ourselves. I learnt recently that a child has to know 150 - 200 words before they start using more words so I guess that idea would apply to sign as well. Another key is to be consistent and incorporate sign into every day life and always use it so Faith can learn. To ensure Faith gets the connection more quickly we will always use the sign and the spoken word. We have chosen simple words to begin with. For example, finish, more, play, water and bath. Just to get us started. We will also teach other family members so we are all doing the same things and Faith will hopefully be able to understand easier. Sign language is so visual that we will have to make sure that we have the appropriate facial expressions and encourage Faith's attempts and have loads of fun too which is so important.

Some of the resources that I have found include,

The Makaton Charity

Key Word Sign Australia

Australian Baby Hands

We are excited to start this new activity with Faith and it will give us something to work on as a family and provide numerous benefits to her.

Spina Bifida Clinic & finding some more amazing help!

Beautiful old trees in the hospital grounds

So much has been happening lately it is hard to know where to begin. I have missed blogging but I have written so many in my head at night, if only I could just print them out. We had a two day planned trip to Brisbane for spina bifida and metabolic clinic. The first exciting news is that Faith has been discharged from the metabolic clinic so this means that she has no metabolic or genetic disorders so we don't have to continue to attend this clinic. Exciting, one less appointment and clinic. Faith's appointment's are decreasing, the specialists have said that she doesn't have to come back for 6months and they are happy that she is progressing and developing. Yay! I love when specialists say 'good good good'.

Usually Faith spends most of the trip vomiting as she can't cope but this time she coped so much better only a couple of vomits. Our first visit using the blended diet so I think that was a big part of why she vomited less. We actually had quite a nice time away with being able to take a walk to Southbank in a between appointments one day and wander through the luscious gardens and enjoy a yummy meal at restaurant we have been visiting since I was pregnant.  Each time we go we talk to the owner and he remembers our journey and he shares his with us. So that is always nice.

We are still continuing with the blended diet, ever so slow that Faith's body adjusts and we don't see any weight reduction. Faith had lost weight over the month (200grams) and since she had had increased vomiting and a UTI, we put it down to that. BUT, it had been a week since we last weighed her and we had been adjusting the blended recipes and adding more protein and increasing the volumes too and she gained 100grams!!!! Yay! She has also got longer and she looks much more well with little rosy cheeks and her cute double chin, so encouraging to see. Our last appointment was with the gastroenterologist and she is trying so hard to figure out the vomiting so we mentioned to her that Faith is in the early stages of a blended diet and she said that if that is what is working for Faith then keep going with it. I am so relieved I didn't think she would support our decision but she did and answered all our questions and said if there is anything she can help with to let her know and to come back in 6months. Such good news! Her only request is that we have a local nutritionist or dietitian to support us.That is another story for another blog.

But I must say the BIGGEST blessing to my husband, Faith and I was our visit to the Spina Bifida Association. With Faith still on tube feeds and she still isn't eating orally we just don't know how to get past the food aversion road block so, who I think is the most amazing speech pathologist said that she would work with us from Brisbane to help get Faith on the road to eating again. I know it will be a slow process but it is a start. She is going to help us start from the beginning and is working out a plan in stages so we all have goals and instructions and a structured plan. This is just so so amazing as for a while now I have had all these ideas, processes, and suggestions floating around my brain and I have not known how to sort them in to a structure to help Faith move forward with her eating. She is going to create a program that can she can run from Brisbane and support us over the net and phone. At last there is a plan something my brain got sort through and my husband and I know what we need to do to help Faith with and what activities are beneficial and in some sort of order. The speech pathologist has given us activities to work on with Faith, books and handouts to read. What a blessing, how do you thank someone like this, I just want to do something to say a BIG thank you and show how much her help, support and guidance brought us direction and more hope. So we came home feeling excited about learning Makaton sign and teaching Faith, learning about the PODD communication system and how it can help her develop and communicate and starting a approach to feeding that will help us work towards, no ng tube.  More about these things later. It is exciting to see how we are moving forward and how Faith is growing and developing.

Blended diet, our first recipe!

We have been slowly introducing different foods to Faith, through a basic recipe of foods we know she can eat and we haven't had any problems so far. We have changed from a lactose free milk to a full cream milk and it hasn't caused Faith any problems. Faith's overnight feeds are no longer running (yay!) and she has been sleeping longer until she got a UTI over the last week. What we have noticed is that the blended diet has helped her be more settled in the tummy while she had a UTI. She still had the usual increased vomiting and was sleepless and extremely restless but the blended food did settle her tummy. She wasn't as sick as she has been with a UTI in past so that is great. The antibiotic makes her feel so bad it is the only way to get rid of the UTI. Today, is the first day without the antibiotic in a week, and she is sleeping better already and is happier.

I received the Homemade Blended Formula Handbook in the post last week and have been madly reading it to learn as much as I can. What a great book, not only does it have a wonderful amount of information about a blended diet but about tubefeeding in general and talks about all the different stresses on the child and parents with tubefeeding. It also looks at ways to help the improve the tubefeeding experience for the child and parents, but talks of really good techniques on helping children become better aquainted with food. It looks at social situations and different perspectives from dietitians, speech pathologists, parents and doctors. It is so good, I would highly recommend it if you are thinking about a blended diet or what to know more about tubefeeding. It has encouraged me so much to look at ways to make tubefeeding a more positive experience for my daughter and myself. It encouraged me to make quite a few changes and offered fantastic ways of helping Faith experience food in a more positive light. There are some great worksheets in the book and it makes figuring out a blended diet so much easier as the guidance is there and it leaves the food decisions to the family to decide. It does encourage seeking professional help with the blended diet as each child will experience the blended diet in a different way. I still haven't even got to the end of the book yet, though I keep flicking through and reading other bits too.

We haven't removed formula feeds as Faith's weight is so delicate we have to do things so much more slower. I am blending up a total day's worth of calories and dividing it over two days. We give the blend over the day before a formula feed as it seems to help keep the formula down and have a small break before we start the formula feed. She definitely seems more happier after a blended meal. It will be exciting when we remove one formula feed.

This is what we did. We are still very much experimenting.

• 2 slices of wholemeal bread
• 1/2 cup of pasta
• 1 cup of mixed vegetables, sweet potato, peas, corn and avocado
• 1 cup of mixed fruit, pear, white grapes, blueberries and apple
• meat
• 3 teaspoons of extra virgin olive oil
• Full cream milk

I found the worksheets really helpful, it gets my mind into the way to think. I am finding learning about nutrition really fascinating and interesting. I have been learning so much I have even changed my diet as I can see the value of different foods clearer. I look forward to giving Faith this new blend later today.

 

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

A UTI, blended diet and Nutrition

The last few days Faith has been waking earlier than she has been and waking sweating which hasn't made sense as the previous week everything was so much less. So this morning I thought it was time to test that Faith wasn't in a state of ketosis which has happened before and since we have removed her overnight feeds I wanted to check. Good news, no ketosis at this stage, but bad news high leucocytes and nitrites in Faith's wee, all signs that she has a UTI present. This would explain her sweating, waking earlier and some irritability. I am so surprised, I didn't expect this, she is so well during the day and she doesn't have a temperature and usually she does. 3 months UTI free and now she has one again. :( We will send a urine sample off to the laboratory this morning but will have to start her on Nitrofurtoin as the lab takes 2-3 days and she could get so sick in those days. I am sad and disappointed but at least we can treat it swiftly.

Urine sample has been sent off, my mind is racing, wrote the above yesterday and I didn't get to come back as it was so busy and intense at times. My brain is constructing letters in relation to finding and applying for finding for a standing frame and following up an appeal with the NSW government over other equipment so hence why my brain is on overload. So many things to think of. Faith had a lot vomiting in the morning but in the afternoon we thankfully didn't have any. We have found that she isn't as sick this time from the UTI, we believe that the blended diet is helping keep her tummy somewhat more settled than usual. Mornings seem to be the worst as overnight we have given her panadol and nurfen. Faith is doing pretty well, she is still playing but gets tired and restless more easily, I think we caught it early. 

My days are pretty full at the moment, I am reading and reading all about nutrition and diet so that I construct the best possible blended diet for Faith. I very excitedly received the Homemade Blended Formula book in the post yesterday and hope to do some reading today. I have nearly finished reading Complete Tubefeeding and I wanted to share a really good excerpt.

Social perception biases
'As blended diet has come a 'thing' these recent years, defined as something novel and other than the simple common sense of feeding people food, a certain fuzzy picture of a'BD-er' has begun to emerge. There is a stereotype, and as such it is far from accurate but at the moment does contain some grains of truth. BD-ers are likely to be more educated than average, especially being self-taught in all sorts of medical stuff fields. Many are parents of special needs children or carers of older people who have close personal motivations for wanting to 'get it right'. Many currently choosing BD have only 'found' it after long struggles with formula tolerance and problems and feel aggrieved that no-one told them about it sooner; this can make for some zealous words indeed. BD-ers are more likely to be the sort of person to feel empowered to disagree with their doctor's advice if it doesn't make sense to them and as such can get labelled 'difficult' or 'feisty' or something similar'.
Complete Tubefeeding by Eric Aadhaar O'Gorman


I really liked the description of a 'BD-er' as to me 'getting it right' is so important. I want what is best for my daughter and if it means speaking assertively then that is what I'll do. So many times with our trips to hospital and even clinics I feel like I am seen as the difficult mum just because I want better than best and want to know more so my husband and I can make the best decision for Faith not just asking on what we are necessarily told. I like having the full picture and all the options. It is all about being assertive and I didn't know about the blended diet until someone on a forum mentioned it and it went from there. We are still are long way off from being completely on a blended diet but we are doing it at the pace that suits Faith and even small changes to her diet we are already seeing results.

• less sweating 
• less vomiting 
• clearer skin 
• happier
• More energy

I look forward to the future and seeing what other dietary changes will make to Faith's life.

Let's do some more of the blended diet

Faith's 1st breakfast blend

It has been a week since we have started Faith on a blended diet, we have had good days and bad. We haven't as yet replaced complete feeds as we just want to make sure Faith can tolerate the change in food. We have seen benefits with her sweating less and vomiting less. We thought it was time to increase her blended diet and ever so slightly decrease the energivit. Last night Faith slept until 7:30am which is quite remarkable as this never happens. On waking we tried her first own blended breakfast followed by her formula. This is what we decided to start with. As it was thick I added some more zymil milk and it went down with ease. We are going to add grains but didn't want to overload her system and just made one new addition of avocado that she hadn't had before.

To give you an idea of what we included,

1 red apple
1 avocado
1 small banana
1 cup zymil milk
1 carrot
2 teaspoons vegetable oil

I wasn't sure where to find out calorie and nutrient content but a couple of bloggers suggested these two websites http://www.whfoods.com/ and http://www.ars.usda.gov/main/site_main.htm?modecode=12-35-45-00. These two sites have an amazing amount of information and it has allowed me to acquire all the information I need to figure out calories and nutrients. Our first blend was just to get us started and our aim now is to have 1 calorie per mil then it equates to the energivit formula. Faith is tolerating her food so much better and we are learning lots about different foods too. Super Nutrition for Babies and Complete Tubefeeding are amazing resources that help us learn so much. The Homemade Formula Handbook hasn't arrived in the post yet so I am very keen for it to arrive. I am sure it has some more information to complement the rest of what we have been reading about.


Faith has been showing a little more interest in food, I think she has been tasting more of the blended food and burping, her face when she burps is full of curiosity and a little apprehension. As Faith has usually been unwell at dinner time we have usually put her to bed and then had dinner but we are going to try and have more dinners together as a family so that she feels included and it is more 'normal'. I was reading in the Complete Tubefeeding book about different words that are used to communicate feed time such as time for a feed, time for blended diet and the common words that we use, breakfast, morning tea etc. It is thought that by using the standard words that we use for eating, breakfast, morning tea etc, could help in teaching Faith about what food is and what eating is about. Making life that little more 'normal'. It makes complete sense to me as how would Faith now what lunch is if I don't call her lunch and my lunch the same thing, when it is. So that is something else we are going to do in hope all these little things will aid Faith in recovering from her food aversion. The more aspects we look at with food we see there is so much more we can do to help Faith. Even ensuring a peaceful and happy environment when Faith is having her breakfast, lunch or dinner is important in aiding her digestion and enhancing her view of food. I know I sometimes get so stressed at those times as I was fearful of vomiting. It is such an exciting time to see Faith progress further.

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.

Making it through the week

My daughter is asleep and it is one of those moments I think I could do some housework, get dressed, empty the dishwasher but I chose to sit. It has been another long morning. This morning and the last few days have been really hard. Faith wakes distressed, crying so loud, sweating and when we are putting her to bed at night she is unwell too. We have times during the day when she is well, where she plays, chats, learns new things and enjoys life. It is one of those periods of her unwellness. The doctors know about these periods of sickness and there is currently nothing they can suggest or advise. I had hoped it wouldn't visit us just yet, I was hoping it was far away. But it is here and I there is no other choice but to keep on pushing through. It doesn't help that it is raining, makes it all the more harder. I don't know what is causing Faith to be unwell this time. It all seem to get worse after we gave her the Neocate Advance, but maybe it just set it off. Faith has such a sensitive tummy. Faith has been teething the last few days so I don't think that has helped. My only thought is that it is a tummy ache and it makes me think how I just want to start a blended diet as I know it will help.

My brain is at the point where it is full. At the moment there just seems so much to do. I have been researching a blended diet and I have enjoyed learning about it and reading the journey's of others. I read about so many success stories and it has been encouraging as I know we are doing the right thing. I ordered another book called Complete Tubefeeding and it looks very informative and helpful. I just have to wait for it to arrive from The Book Depository. I also ordered the Homemade Formula Handbook and Super Nutrition for Babies by Katherine-Erlich. I look forward to them all arriving soon. I am hoping that between them they will provide me with all the information I need to make decisions about Faith's diet and the best way to start a blended diet. Our current dietitian though very helpful isn't able to assist us with a blended diet as when I once mentioned it to her she said it is best she doesn't know that.

I have been printing out articles and information on a blended diet, tube feeding, general diet and I am storing it all in a folder so I have it right in front of me to read and make notes on. It will also be a useful resource when we go to appointments in Brisbane and elsewhere and I can take it and if I get professionals that are not that keen, would like to know more or don't think that we are doing the right thing I can show them my information and refer to it. I just want to be prepared to answer any questions about the blended diet and provide relevant information. As when I last brought the subject up at Faith's appointments it wasn't very well received. I was told that I should just concentrate on her eating food, but I said all the vomiting is stopping her from eating foods and growing. If we can stop the vomiting I do believe that in time she will be more interested in food again. I long for the days when she was so keen to eat so much breakfast, swallowing it all down with a demand for more. I miss those days. I know they will come back but it is such a tedious process.

I am excited that this blended diet could help Faith. We are hoping that a charitable organization will assist us in the purchase of the Vitamix Blender but in the mean time we have ordered one as we can be reimbursed for the amount. So I am very excited that shortly we will be receiving a Vitamix Blender. The company that is supplying us in Australia, Raw Blend were very helpful and they also gave us a medical discount on the purchase of the Vitamix 5200. So that was a wonderful help. So now, I just have to wait, I have to wait for the books to arrive, for the blender to arrive and then we can little by little start Faith on a blended diet...