Mmm, sauce!

Wednesday I ordered some tomato sauce from Sugar Free Zone to try with Asher. Parents of toddlers understand when I say that vegetables are a major struggle at the moment in our house! The parcel came earlier than expected, we received it as Asher's dinner was cooking last night and gave him some to try.

Asher was definitely a fan! The sauce is 'Rosella Low Joule Tomato Sauce'. I'm hoping I can find it local as it ended up costing me quite a bit with freight costs, but seeing Asher's face and having yet another door of possibilities open did make it worth while.

Yesterday I was also a bit busy in the fridge. Asher has been keen on helping himself to his food which can be difficult as it's limited and scattered throughout the fridge and cupboard. So yesterday I cleaned up a shelf that is now his with all his refrigerated treats at his eye level. So far it's worked really well, although he did try to help himself to some cheese right as I was cooking dinner which ended in a bit of a meltdown!


For those interested his shelf contains:
- Red grapes.
- Yoplait 'ForMe' yogurt (sweetened with fructose, not sucrose).
- Sultanas.
- Strawberries.
- Cheese sticks/slices.
- Tins of pureed pears. He gets these as a dessert when he finishes all his dinner and thinks it's a big treat! He loves his pears.
- Cream cheese.
- Avocado and pear.

Strawberries!

I'm really excited to be posting this. A lot of people think I'm crazy getting so excited over something so little, but for us all it's a big thing! Asher has been symptom free for a while now, he sleeps so well, his motions aren't as bad or as frequent and his temper has been like, well, a normal toddler! So we decided it was time to try something new. Paul and I did our research and looked at the amount of sucrose in different fruits. We decided to try Asher on strawberries! I love strawberries and they are something I've never tried with Asher, originally we were waiting for him to turn 1 and then he got his diagnosis. So we bought a punnet and gave him 1 to try as soon as we got home from the shops.

And he LOVED them! He wanted more, but we kept it at 1 and increased it daily. It's now been a month and things are going very smoothly, he loves his strawberries and we love being able to give him a bit more of a variety in his diet. Now what to try next?

It's Been A While...

It's been a while since I last updated this blog. During this time we welcomed our second child, Layla Evelyn. We've been told Layla has a 25% chance of also having CSID. We haven't heard anything about Asher's biopsy, which is something I really should follow up on.

We also celebrated Asher's 2nd birthday in March, infact his party was the day before Layla's due date. I will make a post soon about the food I made for the party. With everything Asher ate that day he handled it very well.

I have also created a Facebook Page for the website. I'll be able to post updates there and hopefully one day down the track this can become a support network for parents, a resource or someone will just read it and know someone else has gone through the same thing.

Our Biopsy Journey.

Back in November of last year I wrote Our Story, which was our journey up until then. We're now going through a new chapter of our journey, so I thought it was time to start writing it down.

Over the last couple of months we have been trying new things in Asher's diet. He's had 3 reactions in this time and as a family we've found this distressing. Each time Asher had trouble sleeping, he would wake at night needing me to help him pass wind and was extremely irritable. He'd get so upset he would become angry with me and it was difficult to help him calm down (thank goodness for The Wiggles at times like this!). We've eliminated the culprits, learned new things about medications and sugar alcohols (Sorbitol does not agree with Asher's system - a common reaction for people with sensitive guts) and have slowly been trying to figure out the correct amounts of things Asher can handle.

During this time I made an appointment with Asher's GI Paed. I became frustrated as he didn't seem to believe what I was describing was that serious at all and still tries to tell me that Asher should not be reacting to starches - something that a lot of CSID patients react to. After some discussion with the doctor though and between my husband and I, we came to the decision that a biopsy might be the best way to go.

It's looking like in April Asher will have a biopsy performed. I'm currently going through the process of trying to insure the Doctor tests for the things that have been recommended to me by other people dealing with CSID. In all honesty, I feel sick at the thought of my son having to go through this and I am very scared of the whole process. Making the decision to go through with it took me over a week even though my husband said we should straight away. I know we need answers and how useful it would be to have the numbers in front of us to work out what mutation of CSID Asher has, but I wish there was an easier way.

Blueberry Muffins.

I'm really starting to enjoy baking. I never used to be really into cooking, but now it's something I really enjoy. I can't use traditional ingredients, but I've had a lot of luck using gluten free products and fructose instead of sugar. Last night I made Asher some blueberry muffins. The other children at his day care were also having muffins today as a snack, so I wanted Asher to be able to enjoy his own.

This recipe is the one I followed, I used 1/2 cup of Fructose instead of the sugar and the same amount of the flours (Orgran's Self-Raising and All Purpose). Asher ate both the muffins I sent with him to day care, so I think they were a success!

Centrelink and Toddlers Helping in the Kitchen.

In my first post of the year I mentioned that Paul and I decided to apply to Centrelink for Carers Payment and Allowance. We put in our application at the start of the year and were told it can take up to 48 days to hear if we've been accepted or not. Well today I recieved my phone call - we've been declined for financial support and they'll give us a Health Care Card (which we already have). Their reasoning for us being declined is that the doctors section of the paperwork said that Asher's not developmentally behind for his age. I was aware before I applied that they were more likely to give the help to people with children that have physical disabilities, but I'm still extremely frustrated.

I've requested a new set of paperwork to be sent out - I'm going to resubmit my application. This time I'm going in with 'all guns loaded', I am currently ringing around trying to get letters from everyone that has worked with Asher and I and has an understanding of CSID. So again his GP will fill out the forms and this time I'm going to attach letters from his dietician and our CYH nurse that has worked with us since Asher was 6 weeks old. I'm very frustrated as a lot of children with special needs are not developmentally behind for their age. Fingers crossed that next time I update about this subject I will have better news.

Now to the next part of my update. Over the weekend I was whipping up a batch of one of Asher's favourite treats (his Oat and Yogurt Bars) and decided to let Asher help. As he's still quite young there's not much he can do, but I've watched him in his little play kitchen pretending to pour and stir and I let him help with the stirring. Here's a couple of pictures I wanted to share on my blog to show the joy he got out of helping. Of course once these were cooked he loved munching away on them again!

So can he have...?

A lot of friends and family find Asher's diet very overwhelming - and who could blame them! While Paul and I have to live this everyday they do not. I have lists around the place of things Asher can eat, things we're trying and things he can't have. The top half of my fridge is dedicated to Asher's food, Asher's anaphylaxis plan and Asher's asthma plan.

So I thought I'd type it out for those interested. If it's not on the list, he can't have it or I haven't tried it with him yet and boy do we space out introductions of new foods! He doesn't actually like everything on this list, but that's when my sneaking can come in handy! So here are Asher's lists, up-to-date as of January 21st 2010!

Asher's OK list.

Vegetables:

- Broccoli.

- Cauliflower.

- Green Beans.

- Swede.

- Spinach.

- Lettuce.

- Celery.

- Capsicum.

- Mushrooms.

- Zucchini.

- Turnip.

- Asparagus.

- Leek.

- Garlic.

Fruit:

- Packham Pears.

- Blueberries.

- Cherries.

- Blackberries.

- Grapes/Sultanas.

- Avocado.

- Paw-Paw.

- Tomato.

- Currents.

Meat:

- Chicken.

- Beef.

- Lamb.

- Pork.

- Tuna.

- Whiting.

Misc:

- 'Our Mate' spread (tastes like Vegemite).

- Heinz Pureed Pears.

- Nuttalex Olive Margarine.

- Philidelphia Cream Cheese Spread.

- Organ's Gluten Free Flour and Self-Raising Flour mixes.

- Glucodin Powder.

- Oatmeal.

- PLAIN cows milk (some milks add soy!).

- Cheese.

- Fruisana Fruit Sugar (fructose).

- Yoplait ForMe Yogurt.

Asher's NO list.

- Banana (ANAPHYLAXIS).

- Sucrose (Sugar/Cane Sugar).

- Gluten.

- Soy.

- Sunflower Seeds.

- Large amounts of rice/corn starches.