Thursday, January 31, 2013

2013 - another year ahead of us on an Elimination diet

The sorrow that is in my heart at the moments seems too much to bear. I look at a year ahead, and am filled with mostly dread about the challenges that lie ahead. It keeps me awake at night, and makes me just want to sleep in the day.

Our gorgeous baby is 8 months old, and is still on a diet of apple and baby rice cereal. We have tried pear, pumpkin and sweet potatoe, but somewhere along the lines, he has continued to break out in rashes, so we've had to start all over again... again. We took a trip to the shops and used a shopping trolley and shopping centre highchair for the first time. Cameron loved sitting up so high and looking around. But, that evening, his body showed signs of an emerging rash. It took over 3 days to heal with the help of steroidal creams. I had taken as many precautions as I could when using the shopping centre things but obviously it wasn't enough. And so the root of my dread reveals itself... what if our gorgeous baby actually has more serious alleriges than our eldest son?

At this point, I'm going to warn you that this post is about to get very long and very detailed. I keep a brave face for our children. I explain allergies, as a way of life for them, trying to teach them that there is more to life than food, and that there are many other ways they can express themselves, have fun and embrace life. For my husband, I keep my complaints brief and practical. What the problems is and how to fix it. Don't get me wrong, he is always supportive, happy to look after the kids so that I can go shopping on my own and read all the the labels. For my friends, I share a little of my burden, but keep it contained. They know it is there, but I dare not empty it out, for fear I may not be able to stop. I don't want my time with them, to be just about me, or just about allergies. So where do I pour out the depth of my feeling and burden? I like to write in my prayer journal, but my hand would get too sore. So typing seems quicker, so here I am. My deepest sorrows, my heaviest burdens, thrust out into cyberspace where it can scatter, so as not to smother another. So stop reading this post whenever you need a breath of fresh air. There will be little to be found in this post. But in other posts, there will be. I promise.

At 8 months, we didn't know about Matthew's allergies. We were careful with introducing foods, and he always had rashes, especially on his face, despite the use of steroidal creams. At 9 months he was diagnosed with anaphylaxis to 8 of the top 9 foods. Life changed in a way I did not think possible.

While breastfeeding, I had to limit those 8 foods from my diet, but I was still able to have a latte with milk, and one serve of wheat a day. Life seemed hard then, but this second time around, I have had to completely eliminate about 20 food categories from my diet. By food categories, I mean that all stone fruit (one category) is out. That includes peaches, plums, nectarines, apricots, cherries etc. I can't have any berries (another category) - no strawberries, blueberries, blackberries, raspberries. There are about 20 of these groups that are out. If you counted the items individually... easily over 100. I drink my coffee straight, I only have rice milk, I don't use pepper or other condiments like mustard, tomatoe sauce, or any asian sauces. The only store bought food I eat is MacDonald's french fries.While this crazy diet does seem to be working for our son... the implications for what it means for his own diet is mind boggling.

He's started to crawl and loves to climb all over me. While it is delightful to watch, and wonderful at times to be climbed on, there is a constant dread that these signs of progress are also signs that life is about to get much more complicated. Every crumb that falls to the ground must be picked up, every spill or smear on our clothes must be washed. Can you imagine keeping things that clean, with a crazy super active 4 year old boy? I feel terrible for our oldest son, who has to constantly wash his hands, is told off all the time, for dropping food, or for kissing his brother before he's properly washed his face.

Our baby's weight gain has significantly slowed compared to the first 3 months of life. The changes in my diet surely mean my breastmilk is not as rich. His current diet would probably be causing some level of malnutrition since growing babies surely need more than what apples and rice have to offer. His sleep is no where near as consistent as our eldest son, probably because his diet is insuffcient and he continues to need night feeds.

The prospect of going overseas is so far from happening that I don't even bother imagining what that would be like. We do go on holidays to visit relatives, but that will continue to get more difficult. Another year of birthday parties, but this time with a baby in tow. Another year of stress. Our eldest son has made a new friend... another birthday party... more special food to prepare... more kids to be wary of... more adults to be mindful of... more people to convince that life really isn't that bad with allergies. Guess what... it really is THAT bad... it really is WORSE! You have got no idea what it is like to think you could lose your kids in an instant because you weren't watching what some other kid did with their cookie.

One time at a park, I decided to let my older son run around on his own. Afterall, he knew the park, he knew where I was and I really needed to feed the baby. So he went off. After about 10 minutes, after I'd finished feeding the baby, I decided to go and look for him. As I pushed the pram, and couldn't see him, I realised what a terrible mistake I had made. What if I find him slumped on the pavement somewhere because he'd picked up a shiny chocolate wrapper out of curiousity? What is another child had dropped their icecream on the slide he was using? How stupid was I to place my son at such risk, just so I could concentrate on feeding our baby? If you think I'm over-reacting, the next time you're at a park, just consider how many children you see walking around with food. Each one of those kids, everything they touch, is a threat to our son's life. I would prefer those children to be carrying rat poison around, not milk, not icecream, not cookies.

What does the future hold for 2 kids with food allergies? When will it get easier? Not anytime soon... of that I am pretty certain. This year will probably be a breeze compared to the next, when our eldest starts school... boy, will we be on a learning curve then. Sigh, so although I dread this coming year, I think I dread the next even more!

Thanks for reading all the way to the end... it probably wasn't as bad as I thought it might me... often things brought out into the light aren't. And so our story continues...

Sunday, January 13, 2013

A Christmas blessing

We have just come back from spending two weeks over Christmas with my family.

To be honest, I was absolutely dreading these holidays because of the severely restricted diet I am on. My family is of Chinese heritage, so celebrations of any sort are typically centered around food. Holidays are centered around food. Life is centered around food. Normally we go out to eat a few times a week at Chinese restaurants, eating foods that aren't on the english menu, foods that I wouldn't even know how to ask for. Typically, it's all delicious. In the past, bringing food for our son was accepted at restaurants... I'm thinking that as he grows up, this will come under scrutiny by restaurant owners... but for now, nobody minds. But for an adult (me) to bring food to a restaurant would probably not go down very well. For the restauranteur or myself to be honest.

So concerned was I about food cross contamination that I actually ordered a brand new fry pan to be delivered before I got there. If I was going to have to do so much cooking, I was going to reward myself with a new pan! As fate would have it, the parcel got lost somewhere and didn't actually arrive until the day before we left?!

As it turns out, we ate most meals at home. What was even better than that was that my mum actually cooked dinners on most nights for us all. I am sure that this is the biggest break from cooking that I have had in nearly 4 years since our allergy journey began. For the first week, I helped in the kitchen, ensuring mum was only using our ingredients, and not sneaking in something extra to make it taste better. She was very disciplined. I am sure she has never used so much Maple syrup or garlic in her life, but it all tasted yummy.

For the second week, I finally relaxed and let her do most of the cooking. My mum did most of the menu planning, and my parents did all the shopping. This gave us the oppotunity to go on more adventures during the day, knowing that dinner was going to be cooked when we got home. Our adventures included a trip to the city, a ride on a ferry, a day at the beach, a day at a water park and even night time adventures to see fireworks for New Year's Eve.

After two weeks, our oldest son who can't has anaphylaxis to so many things, didn't even have one rash. Our little one, who relies on me to restrict anything vaguely interesting, did have one rash break out. We still don't know what that was a result of - perhaps ordering a plain steak and chips once at a resturant for lunch, when we could not possibly find a MacDonalds anywhere. (Unbelievable I know!)

So the trip that I dreaded the most turns out to be so much better than I could have hoped for... thanks to Mum. Best Christmas present ever :-)