What are You Thankful For?

I received a wonderful email this week from a lovely lady, Heather Von St James. In 2005, at the age of 36, she was diagnosed with mesothelioma, a rare form of cancer caused by exposure to asbestos. Heather had given birth to her beautiful daughter, Lily Rose just 3 months before.

After reading my blog, Heather reached out to me to ask me to help raise awareness of the illness and as a fellow survivor, albeit of a different form of cancer, I was happy to help.

Having exchanged a few emails, Heather asked me to write a post about something I’m thankful for and immediately, my girls sprung to the forefront of my mind – but I’ve spent the last 24 hours digging a little deeper than that…

What am I really thankful for? What really defined the life I have built for myself today? Not bravery, as @crazywithtwins had mentioned in her post this week…as she put, when you have cancer, being brave isn’t an option! You either lie there and allow it to beat you or lie there and allow it to be treated – you lose control of your body and yourself for a while and come out at the other end. I was of course therefore thankful for having that control back…but that wasn’t it.

Was it others around me who helped support my journey? Well yes, of course it was, but then I always feel a certain degree of guilt at how many people’s lives were changed as a result of me…

What I’m really thankful for, is strength. through all of this, I’ve realised that the ability to be strong carried us through that entire journey all those years ago and my own body’s strength allowed me to accept the treatment, develop no long term side effects, stay healthy and have two wonderful children. I was strong enough to try for a baby, accepting that it may have never happened. I was strong enough to leave home and marry my husband, putting my care into someone else’s hands so to speak, after years of being protected and cared for by my mother.
It was strength of mind that gave me the push to begin writing my story, to help others, to put myself out there for all to see in the media and to push my past to the back of my mind and focus on living my life!

Heather’s attitude is amazing and despite facing an awful battle with mesothelioma 7 years ago, with a very young baby, her focus has become raising awareness to help others which I really do admire – you can read Heather’s story at her blog which is here and please help to raise awareness by writing a post on something you’re thankful for, tweet the link to me @mammybear84 and I’ll RT and link to Heather, who will do the same.

I’ll also copy a link to your post here 🙂

Ethans Escapades
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Today, you are 9 months old.

Dearest Emelie, my youngest daughter, today you are 9 months old

If like to start with one clear statement; you amaze me!

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You’ve grown from a tiny newborn, completely reliant on our care, attention, research and experimentation into a bubbling little ‘almost toddler‘ full of smiles, fun and joy.

It’s been a long road to get here and the other posts in my blog will one day show you that, but with some great advice, lots of support and some medicine, we are finally here!

At 9 months today, you can sit up, crawl, stand and you’re imitating sounds I make…’o ohh’ is one of your favourites! Last week, you began shouting ‘mama’ when you needed my attention which melted my heart. I’m only glad it’s a shout for attention and not, as previous, crying for help…

I’ll say it again; you amaze me!

Nobody would have ever thought you used to scream for up to 20 hours a day or only nap upright for 2 hours in a 24 hour period…your smile makes our day!

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You will always be the youngest, but it doesn’t show as you’re catching up to your big sister, following her around and playing with her toys…she adores you and I know you’ll be the best of friends! You’re both helping me brilliantly with my diet; I never stop or sit down and never have time to eat as you’re now also working on reducing your nap times!

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Now you’ve reached 9 months old, the same amount of time I carried you in my tummy, I can see you’ve developed just as much as you did then…you’ve overcome so much, throw yourself happily into anything and bring so much happiness into our home, despite what a tough time you have had…you’re now trying lots of foods including yogurts, toast, croissants, biscotti…nothing is a challenge anymore now. You’re also now off your medication and back onto formula milk!!!

For the final time; you amaze me!

I love you in unimaginable amounts and will continue to take care of you the best way I can.

All my love now and forever
Mammy x

All Systems Down!

So, following my wonderful break and amazing first full day back with my little family, Daddybear puts his back out as he’s walking up the stairs today! Poor thing is in agony…all the codeine, heat patches and heat spray in the world haven’t eased his pain and he’s ended up on the sofa to get some comfort.

After creeping down stairs to see how he is, offering him tablets, blankets and any other comforts, I start to feel unwell. It developed from a cold sweat, to an aching stomach to a feeling I remember from being pregnant…yes, I started to feel nauseous. So what a dilemma! Do I risk going back up and waking both girls, therefore keeping everyone awake? Do I keep poor Daddybear awake while I decide whether or not this feeling is going to develop?

I decided on travelling back up stairs and blogging! About what you ask? Illness? Back pain? sort of yes…

It got me thinking.
What do single parents do when they get ill?

I honestly do t know how they must cope! Daddybear is in utter turmoil that he is laid up at the time my body chooses to be ill…already I’m wondering how we will manage tomorrow unless A: I give both girls the bug or B: he ends up in more pain trying to help me out and looking after them…

I wonder what tomorrow brings!

Another Milk Trial

Yesterday, as many of you will have seen on Twitter, Emelie had an Ella’s Kitchen pouch of Chicken and Sweetcorn Mash with Herbs that contained 22% whole milk; it was a daring step, as our last milk formula challenge resulted in a reaction…

For those of you who don’t know where our journey into the unknown started, here’s the link. It should bring you up to speed on how far we’ve come…

Emelie, I am thrilled to say, did not react at all to her scummy lunch and devoured the same again today, also without any reaction. She has slept solidly, been happy and giggly and has had no reflux episodes at all. She has also had toast this week with her porridge! Needless to say, we are delighted! Now here’s the inevitable word for me…

HOWEVER, this lack of reaction could be down to a number of possibilities:

1. Emelie has outgrown her intolerances
2. Her tolerance of milk is increasing, meaning she can digest small amounts of milk mixed with other ‘safe’ ingredients
3. Emelie’s reflux, aggravated by milk, is settling down
4. She is fructose intolerant and can tolerate cows milk but not formula

Now, there are a number of steps to take in my Research Journey in order to find out why Emelie has had no reaction:

1. Increase cows milk intake in percentage per meal to see at which point, if any, she reacts
2. Trial Emelie on formula again
3. Decrease and eventually stop Emelie’s H2 blocker medication to see if she reacts then
4. Continue to increase amounts/percentage per meal of foods she’s reacted to and monitor any reactions

There’s still a road ahead, and it still feels as though the reflux monster will jump out from behind a tree again…and I’m feeling quite a fraud regarding our appointment at Newcastle’s RVI next month, but I’m caring for and curing my daughter single-handedly, one day at a time and that’s such an amazing feeling! Despite being absolutely infuriated that the NHS have had no part in this journey, I’m proud of us for helping her in every way we can!

I would also like to thank Ella’s Kitchen for their support and help managing Emelie’s condition. I’ve had huge amounts of support via twitter and when asking for a document listing the ingredients of each product to colour code using my food list, they sent it to my inbox within the hour, saving me hours of writing these down from the pouches.

Long may the successes continue and fingers crossed the worst is over!
I hope this gives hope to other families, and if you would like any advice or help with issues such as reflux, intolerance or allergy, please don’t hesitate to contact me via email: mamaroddy@gmail.com or via twitter: mammybear84

Big smiles all round here 🙂
Over and out for now!

Packed Lunch Problems!

So, following the media coverage of ‘The Packed Lunch Ban’ possibility, I started to reflect on my own experience as a packed-lunch-kid 20 years ago. I absolutely hated school dinners, the smell of them even! Around 11:30 each day, the corridors would be filled with the smell of chalky mashed potato, carved out with an ice-cream scoop and onto the plastic tray the other kids clutched in horror…it was also the first time I ever consciously remember being aware of social difference, which I always see as being very wrong; some kids never were always at lunch, but had never been called on the Monday lunch money register…

My mum would make my packed lunch on a Sunday evening and the items needing to be refrigerated would be placed in a little bundle on the same shelf, to avoid the morning’s confusion the following day.

Now…the contents! Each day, I had the usual two slices of bread sandwich cut into halves’ with a variety of fillings ranging from cheese, tuna, ham, chicken, cheese spread or turkey. Then, a packet of snacks of some variety…Crisps, mini chedders or something similar. Then came the piece of fruit, an apple or banana perhaps. Often a yoghurt made an appearance; I remember this fondly as we would often spend the evening discussing where the teaspoon that mum had armed me with had disappeared to between opening my lunchbox, closing it and returning home…

She always got a Sainsbury’s chocolate dessert in hers; the girl everyone always envied! She was the tiniest thing you’ve ever seen and each day, ate more than the others on our table put together…everyone tried to bargain with her! They offered entire lunch boxes, sandwiches with a week’s worth of tuck shop money, but with no avail. She even got a plastic spoon to dispose of instead of having the teaspoon argument each evening.

She’s still tiny…and, well, I’m not! It’s life I guess.

So what are my views about banning packed lunches?
Do it. If the government can meet the following, clear criteria:

1. Provide lunch free for all children – if eating healthily is to be part of their education, then it should be free, like the milk was…don’t get me started on that one!
2. Provide a menu to parents which is pre-planned and give to parents at the start of each term, outlining their children’s nutritional intake for the term ahead.
3. Provide a varied menu, including meals suitably stimulating for those with allergies and intolerances, providing 1-1 support to monitor reactions and symptoms, reporting back to parents the same day.
4. Teach cooking as part of the curriculum, allowing pupils to plan, prepare, cook and eat their own Meals…don’t ask parents to buy these ingredients.
5. Provide alternative lunch provision for those on out of school activities, communicating to parents how this compares nutritionally with the planned lunch in school for that day.
6. Serve lunch as lunch should be served, with separate plates! It really sickens me that kids have to almost reach over a slowly temperature-decreasing dessert to eat their lunch. Who likes gravy and custard? Lets be honest!
7. If the tray idea can’t be scrapped, serve all government lunches/dinners in the same way.

Reckon they could do it? I doubt it…so here’s my suggestion:

1. Stick to what schools are for…Educating – teach children about the benefits of healthy eating, in order to change habits at home and in the future.
2. Encourage growth – have a vegetable patch! Encourage children to take their left over fruit and veg for compost…inject some fun!
3. Use cross-curricular exercises – bring calorie or salt intake into a maths lesson for example…
4. Give kids a pack of seeds to grow their own fruit/veg at home as a project…this will help get families involved to!
5. Invite parents into school for a day to cook with their children!

You can find the article from The Guardian here

What do we all think?

Under Control – A Thank You

We’ve come a long way since Emelie began to react to formula milk…looking back at how the blog started, it’s hard to imagine that we were all those people, struggling to function, desperate for support and at a loss as to what was causing Emelie’s severe symptoms. It began with various trips to the GP, requests to see other doctors when we felt fobbed off and weeks of pushing and pushing to get the answer to the issue that plagued our lives…

…7 months on and we still don’t have that answer.

After a trip to A&E, we accepted that we may never know the answer. A paediatrician prescribed Neocate and Omeprazole, an H2 Blocker which would switch off the acid pumps in Emelie’s stomach, this putting a stop to her reflux episodes; it was the strongest medication available he had told us. The milk, was also the most hypo-allergenic. If it were an intolerance or allergy, the milk would work, if it was reflux, the omeprazole would work…it was a ‘left in the dark’ option I was willing to take, as her symptoms became so severe.

Weaning has been just about bearable. Taking a lot of advice from other parents (I say parents, as its not just mums who play a huge part in this, I have spoken to wonderful fathers, desperate to gain control over their crying baby’s pain by scrambling for answers) I was able to select foods that would not aggravate reflux and those that had a low allergen risk. It’s only in the past few weeks, I’ve branched out and become more daring.

Emelie has had a diet largely based on sweet potato and butternut squash, she’s developed a keenness for all things sweet, a habit which needed to be broken. It was only when I got towards the end of The List, that I realised this wasn’t acid reflux…she hasn’t reacted to the majority of foods and so I set about in search of the other likely cause…fructose.

Having looked closely at the foods Emelie has reacted to, I have eliminated high levels of fructose from her diet and she hasn’t reacted since. Emelie is now able to eat pouches of food from Ella’s Kitchen, a brand I have learned to trust and admire throughout our journey so far. As the foods she reacts to are in such low quantities, she is able to tolerate them more easily. I have been amazed by Ella’s Kitchen and they have supported us an incredible amount. Only yesterday, I asked them if they had a master document with all of the ingredients of each item they produced, so I could colour code the ingredients she has reacted to and note down the percentage level that would trigger a reaction; it was emailed to me within 30 minutes, saving me hours of work.

It would be unfair to say that I have done this alone, as I haven’t. I’ve had an amazing amount of import from wonderful people. From Emma over at lovelactosefree, from the members of CMPASupport over on Facebook and from a number of twitter users who have offered us products to try, recipes and general words of advice; I am eternally grateful.

I never imagined 7 months ago, that our red-faced, screaming baby who suffered stomach cramps, rashes, congestion…the works! would be this little bundle of happiness today.

And all without any NHS diagnosis…

With the help of some wonderful people…Mammy cracked it!

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The Goodybox: Grazebox Aims at Younger Munchers!

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After its success with adult ‘Grazers‘, Grazebox are expanding their range, aiming towards the young snackers with the marvellous, healthy, no nasties GoodyBox! the first box is free and you can cancel future orders if you aren’t happy with the free trial; I won’t be cancelling!

The boxes, like Grazeboxes, can be selected for delivery frequencies of your choice and in my opinion, I’d probably only use one of the four snacks per day. Ours arrived on Tuesday 9th July and lasted us through to the weekend. The site is easy to use and you simply select the products you think your little one would like…they then receive a surprising combination in the boxes that arrive.

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This was ours 🙂

we received 2 ‘dipping snacks’, one flapjack snack and one fruit-based snack, which I felt was a good variety. The dipping snacks were varied too, as one was the savoury tortilla chips with tomato salsa, the other, apple with raspberry dip.

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Inside the box, was a card with nutritional information for each of the snacks, as well as clearly-displayed use by dates. Some of these dates were as long as a few months, making it easy to store the snacks in a cupboard and use them at a later date. As for their purpose, they’d be great for days out, fab for picnics or a great treat arriving through the post.

Each box is decorated and comes with colouring and drawing activities, making them great to take out on a day trip. I feel these boxes also help to teach children about the importance of fruit and vegetables.

We also received a code to pass to others to get a free box! Remember, if you aren’t happy with your first order, you can cancel very easily online. If you use the code provided below, we also get £1 in our Graze PiggyBank, to use towards boxes we get in the future. I have my deliveries set to once every 2 weeks and at £3.89 a box, it makes each snack just 97p with free delivery too!

want to try the new #Goodybox for kids by GrazeBox? Enter the code V7H9DHJD to get your 1st box free! You’ll also add £1 for us 🙂

‘No more’ to Newborns

As promised, my post on no more newborns has arrived. Now, this post may be rather cryptic, but I’ve used the power of imagery and suggestion to keep you all along the right track…

2 years ago, I gave birth for the first time. My mother and husband stood with me, gritting teeth and attempting to convince me through strained facial expressions that the pain and pressure I felt was completely normal and that it would, I quote, ‘all be over soon…indeed it was…that part. Then came 2 inches worth of stitches, a pile of cushions and two weeks worth of painkillers.

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They were right, I soon forgot the pain and the joy of motherhood swept over me entirely…so much so, I grieved the loss of my ‘pregnant time‘ and decided to do it all over again! A month before Orlaith’s first birthday, I discovered Emelie was on her way, she was born quickly, after spending an hour thinking this was it, arranging my mother to sit at our house while Orlaith slept, going to hospital to be ‘checked’ and discovering I was 5cm dilated! She was born at 4:20am, naturally, with no pain relief…this time, I never forgot the pain; that amazing, liberating, empowering pain as she was born will stay with me forever.

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So when I craved that pain again and approached the subject with my husband one evening, I didn’t just grieve the loss of pregnancy, I grieved for a state I would never find myself in again; our family felt complete. I was overwhelmed by this feeling, knowing I’d never hold my newborn again, never buy loose clothes to hide my cloud-like appearance or crave pesto and bananas! Something inside began to hurt.

Once the decision was made, we knew we had to stand firm. I have a terrible yet wonderful habit of putting everyone in the house before myself, meaning I forget about my own stuff! It makes me unreliable as far as preventing a pregnancy goes…this is the right thing to do, he had said a few months back, when he rang to make the appointment.

So yesterday, on that glorious Saturday when the pavements of the UK were cracking under the immense heat, we found ourselves there. After seeing me through two births, I showed the same support, making conversation and showing, through gritted teeth and strained facial expressions that everything was ok and that it would ‘all be over soon’.

It was…and now we know that our life as our completed family moves forward, so we can get stronger, grow together and one day maybe get some more time to be ‘us‘ again 🙂

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I’ve added this to Mondays pin-it party over at Mamasaurus’ Blog…to join, click the badge 🙂

Mammasaurus

Another Ella’s Achievement!

After a successful trial of Ella’s Kitchen Pumpkin, Sweetcorn and Peas a few weeks ago, I continued to search the products available in our local supermarket. Disappointingly, no more savoury pouches appeared suitable, as many contained carrot and apple from Emelie’s ‘red‘ list. We did however, find some fruit pouches with banana which would not, hopefully, be problematic!

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I heated the contents slightly, as I served this to Emelie for breakfast, thinking that if she did react to apricot (new food), then I would know early in the day and could once again turn to my beloved sweet potato to save the day!

…she is now fast asleep…

Ellas Kitchen, once again, is making me smile! If only they’d stop using as much apple and carrot so we could enjoy more!

Maybe we will do another carrot trial next…open our options up a little!

More Bloggers on Allergies: a growing community!

When you have a child with allergies, suddenly.

…It’s lovely to see others blogging about their experiences of allergy! Looking back at my older posts this is how mamaroddy84’s blog first started, as I used it as an outlet for how we were affected as a family as well as the effects on Emelie.