courtesy of 3poppies photography

Friday, 30 March 2012

Enjoying the sunshine.

What is it about the sunshine that clears away the cobwebs of life when it arrives? For us, It is the warm weather that invites us to get out and do something fun. My husband picked this week to have a holiday from work. He couldn't have picked a better week , with early summer arriving in England!
We wanted to make the most of his break, goodness knows we really needed a break! It's not so easily done in our situation though. Night after night of no sleep had left me with a lot of pain and no energy and a grumpy baby, but we weren't going to let that stop us.
The doctor told us to give baby antihistamines if he was reacting to food, so desperate to try anything we got some and they worked! He was much more settled and slept much better, only waking every couple of hours. Getting a better night sleep ensured that my body would get some rest to rejuvenate for the next day. And each day we planned scheduled nap times for the boys and myself.
Then in the afternoons we maximised on the fun we could have in the sun. We went to parks and to the beach - places where I could sit down, but the rest of the family could enjoy and run around.
Then at night I would go to bed once the boys were asleep to make sure I had plenty of resting time.
It still took its toll on me, and the week ended in sickness and exhaustion, but those three days felt like we were on holiday. The distraction from the same four walls has helped us all to shake off some of the burdens we were carrying.

Saturday, 24 March 2012

The new path - allergies/intolerances

Finding solutions to a problem is rarely a straight course, as has been the case for finding solutions to our baby's condition. Looking back at my blog and thinking about our journey so far, there have been many times I think we may be on the right path, only to find that it has led us on to a new path. For instance, the 'back to basics' diet we tried sent baby's symptoms through the roof and we realised that he suffers with non IgE mediated food allergies and intolerances with reactions that last for DAYS! What does this mean for us now then? What's the new path? I'm going to try a low histamine diet as he has shown reactions to some foods that contain histamine. He can't tolerate dairy or wheat. He's shown allergic reactions to egg and nuts (?) and is still reacting, which must be to foods in my diet. Through researching on the net, I've found foods high in histamine, in a nutshell, are:
Processed meats
Fermented foods
Citrus fruits (banana is also suspect, so will have that moderately)
Dairy products
Tomatoes, aubergine (eggplant), spinach
Fish (unless gutted and eaten fresh)
Alcohol ... Not that I drink it, but it might be useful information for those who are interested in this diet.

  I've also found a fantastic piece written by doctors on Australia to do with babies with allergies and intolerances. I'll hopefully be able to work out how to share a link successfully on here, for once, and post it! It describes my baby well, and how best to wean him. If the link doesn't work then google the 'food intolerant allergic baby' and it should be the first link.

Wednesday, 21 March 2012

Baby update

Daddy and grandad are swimming with the boys. To most, this event might be enjoyable but insignificant. In the life of MY baby this is a significant event! I can count on one finger the amount of times me and my baby have been apart for more than 10 minutes, and that's because he was sleeping. Right now I'm sat on my own, arms free, legs up, watching my boys splash in the water with big smiles on their faces. My baby doesn't even know I'm in the same room and he's happy. No money in the world can buy this feeling - priceless! I know daddy will appreciate the time with him too!

On another good note, these weeks of hell with reaction after reaction have shown that my baby has allergies and intolerances. That's right numerous. Weaning him is proving to be a minefield where the wrong foods can cause wheezing, rashes, increased reflux, sleepless nights, and irritability and clinginess. Even the medicine I've been giving to ease his teething pain causes reactions. It's been a hard slog, but it's helped us to see that extra help is needed. Blood tests are being arranged and dietician appointments have been set up. Hopefully, we'll be able to get the right sort of help. Won't it be great if it's as easy as that. Unfortunately, my own experiences and the experiences of others in similar situations have shown its not as easy. There is a world of different foods out there for us to try, which could a mean a whole load more of these hellish weeks. I'm breast feeding my baby still and whatever I eat can cause these reactions as well, so im on a restricted diet and I have to tread cautiously when trying new foods.

While on the subject of breast feeding, when I had my baby my goal was to breast feed till 6 months and then switch to formula. As it became apparent that baby had problems I continued to breast feed because my research showed that it was best for him in his condition. Now allergies and intolerances have come to light we can not give him regular formula even if we wanted to. There are formulas for babies who have multiple food intolerances and allergies, but they cost £40 a tin and last 2-3 days depending on the appetite of your baby (mine can feed constantly if having a bad reaction). There is no way we could afford to give him this, and GP surgeries fight every inch of the way not to give it to people because of the cost (quoting from experiences from an online forum). And so, we could be looking at breast feeding for the long term yet. As much as I advocate breast feeding for babies, I do have reservations when I think of breast feeding past one year (for myself, I hold no judgement on others doing it). However, I've thrown aside all the rest of my 'good parenting' rules out the window due to soothing and trying to ease my babies pain, it looks like I'll have to throw out my reservations on this too.

I'm not sure what's next on the road to recovery, but the past few weeks of torture have hopefully brought us one step closer!

Saturday, 17 March 2012

You are not alone

I have consumed so much information about babies, their digestive systems and conditions pertaining to it that I am becoming overwhelmed by it all. There's so much to take in and my baby has so many symptoms that when I think I've reached the solution a spanner is thrown in the works and I'm left exhausted, confused and clueless again. I have one goal, and that is to find the solution to ease my babies pain, to make him happy, healthy and independent. My gut feeling tells me that he can get better. I spend my waking and sleeping hours trying to find out how.
After an emotional day last week I was told 'This is it, Jen, there isn't a solution you've got to live with it'.
I spent the boys nap time that day in earnest prayer. I wanted to know if I really was wasting my time. Had I been going down the wrong path this whole time? I read a general conference talk, which I can't find or remember now, but at that moment it was perfect. The speaker said whatever is important to me is important to Heavenly Father. I will know what is right and I have to stand up for it. My prayers will be answered.
The next talk I came across was the privilege of prayer by J Devn Cornish
Again, the message was repeated, what is important to me is important to Heavenly Father. I need to pray and my prayers will be answered. My job is to accept the guidance and recognise how my prayers are being answered.
I have felt immense comfort this week, knowing that when I felt alone in my quest I am not alone. I need to fine tune my abilities to recognise the promptings of the spirit to help me sift through the information I receive to try and find the help my poor baby needs.
This journey is painful, exhausting and relentless, but I need to remember that I am not alone. What a comfort!

Thursday, 8 March 2012

Time will tell ..

I have spent months researching, praying, crying, despairing and wearing myself down to such a point that one small step down and I've reached rock bottom. It's a scary place to be, and at times I have panicked. I believe the solution that will head me in the direction away from rock bottom lies with getting myself and my baby better. I know I can handle the other things if I gain energy to make my body work. It really is a scary place when you feel your body shutting down and there are little people relying on you for their care and you don't know if you will be able to physically give them the care you need!

An angel came up to me two weeks ago and said she wanted to help me. I am at a stage that I am willing to accept whatever help is offered so I accepted her offer gratefully. This angel has been in a very similar situation to me and she is out the other side. She has health, she has energy, she is happy. She told me the solution to her problems was to change the foods she was eating. She likened it to putting the right fuel in a car. We spent the day at her house where she showed me lots of ways to make healthy, delicious food. She told me what foods were good for my body, she told me why the foods I have been eating were harmful to me. And it made sense! I love my food, I have begrudged my previous diets for denying me of scrummy foods. But this time it's different, it feels right, it feels healthy, it feels like my body is asking for it. That's not to say I won't begrudge it tomorrow and that I won't find it difficult, but it does make sense!
Will it work? Only time will tell. Is this the solution to my problems? I don't know, but I am willing to try it because it feels right.
What does it entail? No gluten, no dairy, no sugar, meat sparingly, no potatoes or tomatoes during the detox, but then all fruits, vegetables, raw chocolate, and other superfoods. Basically, it's getting back to basics! It's getting rid of all the foods that have been refined, modified etc for our modern day diets and eating food as it was meant to be eaten.
For a condition that is caused by a build up of toxins in the body, doesn't it make sense to remove the toxins? As for my baby, I hope it will help him too. Since Christmas I have been adamant that I don't want him on the medicines as they didn't work and as I learnt more about his condition and intolerances I have felt that we needed to help him by diet. By knowing what foods can help heal his gut as well as avoiding the foods that irritate his gut. This makes sense to me. But again, only time will tell if this is the way forward.
Watch this space!

Tuesday, 6 March 2012

Some nights are worth it!

I went out on Saturday night. It's been over 8 months since I had a night out of the house. I've turned down invites left, right and centre in favour of conserving energy and looking after my baby. I knew there would be consequences to having a night out. This is the main reason I haven't been anywhere. With M.E your body punishes you if you have any fun (this is what it feels like anyway.) But I did it, I went out. Baby in tow. And do you know what? It really was worth the consequences!
Right up until Saturday afternoon I wasn't going out. I didn't want to take out an awkward, screaming, refluxing baby. I didn't want to experience the increase in pain, the exhaustion and heaviness that would inevitably follow. And my husband had booked time off work to go to a football match as he knew I wasn't going out, so I needed to look after my toddler.
Then the night got closer and the realisation hit me - that some of my most favourite people in the whole world were meeting up and we hadn't had a night like this since we were single. Without a second thought my husband told me that I should go, he would miss the match and take our toddler on a boys night. My sister said she would help me get ready as she was coming too, and the others assured me that they were there to help me. I had lots of concerns, but the night went so well. There was lots of laughter, good food, but the company was the best.
Three days on and I'm still paying for it, but the emotional strength it gave me is worth every bit of pain, exhaustion and heaviness. Pacing is a good technique to help maintain your energy levels, but on rare occasions, a good blow out is needed to feed the soul!