A whole year has passed!!

Two weeks ago Halle Grace turned ONE!! I love first birthdays. I love looking back on photos and seeing how much she has grown! It's seriously crazy how small they start out to how big they become in such a short amount of time. I'm as proud of Halle and all her accomplishments as i am of myself and Reuben for making it through the year! Halle is one tough little girl! Thinking back to everything she has endured this year, it's just amazing how well she coped. The flu, 2 bouts of pneumonia, hand foot and mouth and FPIES. She got through it all with very minimal treatment and no medications as she was allergic to everything we tried. Our bodies really are incredible at healing. I am also super proud to have made it a whole year on such a restricted diet. It has been one of the hardest things i have done but i'm so thankful i could continue to give Halle the best nutrition she needed. As she has gotten older we are seeing that she isn't as sensitive through my milk anymore and i have had sneaky tastes of 'naughty' foods without reactions. So hopefully over this year i can start adding more foods and enjoy some more variety.

So where are we at with foods for Halle since my last post? She has 7 definite safe foods!! Pumpkin, carrot, sweet potato, zucchini, almonds beef and lamb! Over the past week after an appointment with a dietitian we have taken a leap and introduced 6 new foods; cashews, banana, dates, blueberries, honey and coconut oil! I wasn't going to add that many at once but it just sort of happened because i started giving her tastes of my snacks without her reacting so i just kept going. So far so good. She did a huge vomit in the middle of the night last night but is otherwise fine so i'll just keep monitoring her. At our appointment we realised she had lost some weight and hadn't gained anything in over 2 months so our goal was to start feeding her up. She now eats pumpkin soup for breakfast, some bits of fruit and bliss balls i made her for snacks, roast vegetables for lunch and a mix of meat with vegetables for dinners. All her main meals are cooked in broth with lots of fat and I add coconut oil to basically everything to help with the weight and also the constipation. That is her biggest issue now since adding more foods. She is loving it though! And i am loving feeding her.

Since my last post she has had a couple more acute reactions to egg. They both haven't been as severe as her first reaction and the time period seems to have gone from 2 hours after eating it to 4 hours later. It's still crazy how the tiniest crumb of anything with egg in it can cause so much vomiting! We need to be very vigilant to keep any snacks with egg in them out of her reach and the floor of the house needs to be vacuumed a lot to keep her safe. It's why Reuben bought me a robo vacuum cleaner. It's been so helpful! 😀 I love it!!

For the more recent future we will continue doing what we are doing. I am hoping to get Halle eating all the same foods as me soon so meal times are a bit easier. Then after we have gotten there i will start introducing foods to my diet to see if she reacts to them still. We are praying she has at least outgrown some of her allergies/intolerances.

10 months old!

Wow Halle is 10 months old!!! Where has the time gone!? Life has continued to be one roller coaster after another. Up until 9 months she was a very sick little girl. She suffered hand foot and mouth disease, another pretty bad FPIES reaction and ended up in hospital with pneumonia for the second time in her short little life. Thankfully since then she has been sickness free! So a whole month without even as much as a runny nose. That has been so nice!!

When she had her second FPIES reaction i decided to cut all the food i was feeding her for awhile. Her poor gut was a mess! The poo was insane and she needed a break so we could try get her back to baseline. Since then i have been in contact with an amazing lady who was the one who got me started on the whole gut healing journey our family started about 4 years ago now. She also had kids with FPIES and she used the GAPS diet to help heal them. She gave me some awesome insight into the unpredictability of FPIES and how sickness, teething and anything detoxing can trigger FPIES flare ups. It is all to do with inflammation in the body and the body not coping with the food proteins and rejecting them causing the reactions. If the body isn't fighting inflammation too much then more foods can be tolerated. I definitely see this is true with how Halle can have safe foods (herself or ones that i'm eating and she can tolerate through breast milk) and then after a reaction to something else, or when she's sick she will lose them. Sometimes i can add them back after a break but not always. I saw the same with Abbey and Iyla, but back then i never understood what was going on! FPIES is such a mystery and so confusing!! It goes against the basic understanding of most allergies. After my chat to this knowledgeable lady i realised that i needed to slow down on feeding Halle. Her body struggles to even cope with the fiber in vegetables, it's all too much on her gut. So now it is all about healing and reducing inflammation. Slow cooked broth and meats are amazing at healing the lining of the gut, so that is what we have started with. For about a month now that is all i have been feeding Halle. Boring i know, but if it will help in the long run i am all for it. Soon i am going to VERY slowly start introducing carrot juice. Carrot juice is known for it's anti inflammatory properties. I really hope she will tolerate it! Then after she turns one I'll start adding in vegetables that i know she doesn't react to through breast milk. They will be slow cooked in broth to help them be easier to digest.

Over the past month, most of the time things were great with Halle. She was such a happy little girl again. Life was easy and i was actually getting back into a nice routine and even keeping the house clean! hahahaha. But without warning things have been pretty rough again lately. She cut her 5th tooth and true to FPIES form, this messed with her gut again. She also found some crumbs of things on the floor and has had a mild reactions which have caused screaming, gross poo, fighting every single sleep, waking a million times a night and just not being her normal happy self. I have also lost a few foods that i used to be able to eat. It's so hard to become even more restricted. But i know without a doubt that breast milk is the very best for her right now. I have gotten this far and she mostly does amazing, i can't even play with the idea of formula that she more than likely wont even tolerate. She is putting on weight, i am able to maintain my weight and she is getting enough to eat. It's a lot of work and there are definitely days i wish i could give up, but i know i can do this!

I'm really hoping things settle down with Halle again soon and we can avoid more reactions. But with her starting to be on the move i have a feeling we are only at the start of the hardest part of this journey. She isn't crawling yet thankfully but she is learning to bum shuffle and can move short distances. It's amazing the things she finds on the floor even after i've just vacuumed!

We're baaack :(

It's been 4 years and 4 months since i last updated this blog!! It feels like a lifetime ago!! So much has happened in those years and our family has changed so much!

For those of you who don't know us personally, we have added 2 more gorgeous little girls to our family since my last update. Violet Hope and Halle Grace. They have added so much love and joy to our lives!!

Violet was born on the 8th of June 2017. We were richly blessed with her and she was spared the awful life of FPIES. It was such an amazing experience to have a baby that didn't have so many issues with food! She was such an easy baby! When we started solids she had some mild intolerances but we had learned of the healing properties of the GAPS diet and after 6 months on this diet she was pretty much completely healed.

Halle was born on the 26th of January this year and is now 8 months old. The first couple of weeks of her life she showed no reaction to things in my breastmilk and we were so hopeful that we would get spared FPIES again. But God obviously had a different plan for our lives. From 2 weeks of age Halle started showing signs of intolerances. She became spewy and refluxy, her poo became foul, she screamed a lot and barely slept. Right away i began cutting foods out of my diet. I was hoping it would just be a few things that were affecting her. But over a few months my list of safe foods kept dropping. Eventually i was only eating 20 different foods/ingredients. BUT we finally found a baseline!! It was so nice to have a happy baby. It has been completely worth the restrictions.

We thought we were pretty sorted when we started solids. If we could keep Halle away from the foods i wasn't eating and only feed her foods that she didn't react to through my milk we should be fine! But I was so wrong. On Thursday Halle had a severe acute FPIES reaction to egg. I have had egg in my diet for ages with no problems. Halle has also eaten egg herself 5 times before this with no reaction at all. I fed her less then 1/2 a teaspoon of some yolk from my morning boiled egg at around 7.30am. Everything was normal and she went down for her nap as usual at 8.30am. Cue the scream from Iyla 1 hour later that Halle had thrown up in her bed. I had been outside helping Violet with something and wasn't too worried as the girls love being dramatic about Halle's little spews. But when i saw her bed i knew something wasn't right. Everything was covered in vomit. 5 min later she projectile vomited again all over me. The profuse vomiting went on every 10 min for an hour and then the next hour she just threw up bile or dry retched every 10min. She also did an explosive disgusting poo in between all of that. She became very lethargic, floppy and grey and at one point unresponsive. I've never been so scared in my life. I was trying to organise getting her to hospital before she had become unresponsive and Reuben was trying to rush home from work to come with me. But thankfully by the time he got home she was starting to pick up again. There isn't much that hospital can really do, but i never want to be alone with her again when she goes into shock! It's so traumatising! It was a full blown and very typical FPIES reaction, but one we had never truly experienced before. The older girls reactions were never this severe.

These photos are about 15 min apart. The first one of her in my bed was when she was at her sickest. You can see the grey tone of her skin. The photo doesn't show how floppy she was. She was like a ragdoll. I know now that she had gone into shock. Poor bubba. The second photo was her slowly recovering. She started looking around again and wasn't completely out of it anymore. Her colour was back a bit too. Over the rest of the day she slept a lot and didn't feed much, but she was much much better. The next day the diarrhoea was awful! But other then that she was thankfully back to her happy little self. 

So as much as we hoped and prayed we wouldn't need to experience FPIES again, here we are. It's hard to understand why, but i'm putting my trust in God that he knows what his plan is in this. I'm confused and upset but we love this little girl with all our hearts and we will do everything we can to help her through the next year or so. We are so very thankful that we know so much more about gut health this time around. Although FPIES is something else and doesn't conform to anything i've really learned. So i'll continue to learn and grow and try to understand this strange condition more. In the meantime we will go veeery slow when we introduce more solids. Nothing is necessarily safe anymore. For now we are sticking to just broth to help her gut recover from her reaction. 

Happy Second Birthday Baby Girl!!

I thought that seeing as Iyla just turned 2 it really was time for another update! It's been over 2 months since the last one! Things had been going really well with Iyla. We were almost set to call her allergy free. That was until 3 weeks ago when we trialed corn...one of her last bad foods to trial. It was a build up reaction over 5 days. But we had to stop giving it to her as she was just getting sicker and sicker from it.

She was back to her happy little self a few days later and with her eating again i started giving her nutella on her sandwiches for lunch. She had, had it randomly but never more then a few times a week. We hadn't noticed any issues before but after a week of her eating it every day, her mood, sleep, poo and reflux all started going downhill. It finally clicked that i had to go back to good old cheese on her sandwiches instead.

Only a few days after that gastro hit our family with force. It's been 10 days now since Iyla had it but there hasn't been any improvement in the diarrhoea. The poo just wont stop coming! Her mood is all over the place too. She definitely isn't her normal happy little self. There are tears, screaming and tantrums most of the day. But thankfully if we are out and about she is distracted and mostly happy. I can't wait for things to go back to normal though. I'm not sure if the diarrhoea is still from the gastro or if she is reacting to something that was safe because her stomach is so messed up. We will just have to wait it out a bit longer and then decide what to do if things don't get better. I have no idea where we would start!


Here is Iyla on her birthday with her favourite present. She managed a smile even though she had just been having a complete meltdown about the fact i wanted a photo. 

I'm so excited!!

Iyla is almost 22 months and seems to be at the end of her FPIES journey! After her last bout of vomiting which thankfully turned out to be gastro, she is just passing food after food after food. We started trialing things 3 foods at a time but now we are getting braver and are giving her small amounts of most foods except her previous really bad ones. Things that we know for sure she has passed are

tomato
yeast
all oils
cucumber
peas
green beans
zucchini
passion fruit
pineapple
grapes
fish
almond
coconut
lettuce

2 times now she has had the same dinner as us which is so exciting for her and us! The first was spaghetti (i just used an organic pasta sauce) and tonight she had chicken parmigiana, chips and salad. She is also eating shop bought bread without any problems. Which is quite amazing as it has soy flour in it!
The only thing that she has eaten recently which has caused a mild reaction (up all night with tummy pains both times) was m&m's. But really what was i thinking? Definitely not the best food to feed a kid with allergies. I just couldn't resist those pleading eyes and cute little voice asking for 'more lollies.'

I'll keep you all updated as to how she continues to go but it is looking extremely promising!

BAD reaction!!

We started Iyla's next 3 foods trial on Friday and we thought it was going really well. We were trialling, almonds, spinach and cauliflower. The first two days things were great. No issues what so ever. Then yesterday she refused to eat the piece of almond slice i had made her in the morning. I didn't push it and then decided while i was making her a meatball for dinner that i would add a little bit of almond meal just to make sure she got some that day. She ate her meatball fine, she loved it. All was well until 8pm...exactly 2hrs after dinner. Then she started vomiting, which went on for about 2 hours. She got to puking bile and then finally went to sleep. She slept till 12.30am but woke up throwing up bile again twice. At 4.30am she woke up again and was thirsty. I let her have a little sip and after keeping that in for 20 min i let her just sip more water slowly over the next two hours. She was back in bed at 6.45am and then basically slept all day. She was only awake between 9.30 and 11.30. I had to wake her to pick up Connor from school but thankfully she was lots happier then. She still isn't really eating but she is drinking lots which is most important right now.

We'll wait a week before starting the spinach and cauliflower trials again but we wont bother giving almonds another go. 

I did something crazy...

Last week Monday i did something crazy...I started 3 new food trials with Iyla at the same time! I admit i was scared, but i also just want to add to her diet so badly. I figured if things went badly it wasn't too hard to cut back on two of the foods and then trial one at a time. We were extremely lucky..blessed really...that she has past all 3 of those foods!!! It's so exciting!! So now we have added sweet potato, mushrooms and pear into her diet. With pear being a previous bad food it was very exciting that she passed that one too! I wanted to try mushrooms so that i could get more flavour into her dinners. I am a little shocked still that she LOVES them and although she won't eat them raw, she will eat them after they have been fried and has happily eaten them alongside her breakfast for the past week. Sweet potato was a bit of an issue at the start as she really didn't like it. But after hiding it in her vitabrits every morning she started to get used to the taste and now i have added it to her dinner without any gagging or spitting it out. 

For this week we will just keep going with the 3 new foods and hope for no build up reactions but next week we are planning to start another 3 food trial. Hopefully we have the same results!!