Eating everything but also going a little backward

In the past week we have pretty much started feeding Abbey everything. We figured that if her worst foods weren't causing any problems that everything should be fine. She has been sharing our dinners and eating all sorts of foods for breakfasts, snacks and lunches. We are still staying away from additives and preservatives, but we are doing that for Connor too so it isn't that difficult. Abbey is totally enjoying eating!! On Saturday morning though we noticed that she had started with green mucus filled diarrhoea. She was still happy though so we persisted with the foods thinking her stomach might just be adjusting. By Sunday afternoon, the diarrhoea was worse and the crying had started. She was pretty good overnight but this morning again she was a miserable mess. I am so thankful that i already had a chiro appointment all booked in for her. The amino acids were testing bad again. So a quick massage in the same acupressure points and she already seems lots happier! The chiro told me that she will probably need to come back one or two more times but after that she shouldn't have a problem again. 

It is just so exciting having this whole new life! We want to shout it to the world that our daughter is all better! It has been the hardest 18 months we have ever experienced but we have learned so much and i know our whole family have grown into better people from this experience. We have learned so much patience and i especially have learned how to cope with next to no sleep. If i was told that i would be dealing with this before it happened i would have said it would be impossible. I am known for loving my sleep! I remember when Connor was a baby and was already sleeping through the night at 11 weeks i used to think that God knew exactly what i needed and that is why He gave me a baby that slept so well. That theory was thrown out of the window when Abbey came along. During the sleeplessness and the screaming i learned that the only way that i could cope and the only way i could get through this rough time was by praying and relying on God to give me the strength to deal with it. And here we are now. We all managed to get through it. I still can't quite believe that it is over!! Well the nights still aren't perfect and Abbey still wakes 1-2 times but that is way better then it used to be. I have been getting a few 8hr stretches and it is amazing the difference it has made to my energy levels and mood. I feel like a new woman! Hopefully we can start teaching her now to sleep through completely. But I'm happy for now and just hoping this whole NAET thing will continue to work and Abbey will continue to be able to eat any food she wants!

I guess that this is pretty much the end of my blog. My Little Pie With FPIES no longer has FPIES :). There is no way that 6 months ago when i started it i would have known that we would find a cure. I was thinking that we would be in this for at least another 2 or 3 years. I am not complaining though! No parent wants their child to suffer with pain or to miss out on food which is such a huge part of our lifestyle. I pray that every parent with a child who has FPIES, or even other allergies will try NAET with their children. And i really hope they get the same results as we have gotten. 

I also want to take this time to thank everyone for their thoughts, prayers, cards, meals, phone calls and visits, especially over the past year. They made my life just that little bit easier and helped me to smile. I am mostly thankful to God though for bringing us through this journey and answering everybody's prayer.

The weird and the wonderful

I have been asked by a few people to update my blog and i'm sorry it has taken so long. I just haven't really been in a mood for writing and i also don't really know how to explain what i need to write. But i'll give it my best shot.

So as most of you know we are back from hospital and the endoscopy came back clear for inflammation, EoE and Celiacs. After this test was done the doctors and immunologists wanted to start trialing Abbey on foods to see what her reactions were like. They started feeding her all the foods that she reacted to the worst. First they tried carrot, but that one didn't work as she threw up shortly after eating it due to feeling sick from the general anesthetic. The next day she was given weetbix for breakfast to start trialing wheat. Then she was given spinach for lunch and then pasta for dinner. We were shocked and a bit embarrassed when she had no reaction what so ever! The doctors were confused but said maybe she will have a more delayed reaction so they wanted to keep us in the hospital and continue to feed her food and see if anything happened. The next day Abbey was given weetbix again, then chicken for lunch and rice for dinner. Apart from a good sized vomit overnight and a pretty restless sleep things were still fine. Nothing like the hours of screaming in agony that we usually had from foods at home though. The normal mucus filled diarrhoea also never started. We were even more embarrassed and VERY confused!! Abbey's immunologist came to see us on the Friday morning and told us that Abbey's reactions were all behavioural and if things went bad when we got home again we just had to give her time out when she screamed. Of course this made me very angry! An 18 month old screaming inconsolably ages after being given a food and it being "behavioural" does not make sense. They have a short memory and lack the ability to tantrum about something hours after the event. And besides, Abbey LOVES food! She would eat anything we gave her and if she really wanted to be behavioural about food i would think it would start with the refusing to eat it. So i have no doubt in my mind that Abbey's reactions are NOT behavioural and they have been VERY VERY real. There is something else at play that has caused her to not have any reactions. And that is what brings me to the story of my chiropractor.  

A week before we went to take Abbey to hospital i had taken Abbey to see my chiropractor. He has been very interested in helping me find cures for Abbey's allergies and since she was a baby he has taught me things like the muscle testing and has also done things with her to hopefully help. Previously none of it has worked. The last time i saw him he wanted to do some tests to see if anything else was the problem and not just the foods. He does this technique called NAET which stands for Nambudripad's Allergy Elimination Technique. If you click on the link it will take you to a site that explains it. It is very weird and i seriously didn't think it would work, but i was kind of desperate and i had heard of it working for a lady in America who has a son the same age as Abbey who also was allergic to pretty much everything. After 3 sessions he was able to eat everything. The chiro started off by using the muscle testing i have talked about previously to work out if there was any other problems. According to his test she is allergic to amino acids. Amino acids are directly related to protein, so that makes sense that she was reacting to the protein in foods. After he worked this out he did massaging on some acupressure points down her spine, in the fleshy part between her thumbs and fingers and also on the tip of her ears. I know VERY weird and i can understand if people don't believe this. I used to be one of those people, but now i have seen the results for myself and i cannot deny their effectiveness. When we were in hospital and Abbey wasn't reacting it slightly crossed my mind that what the chiro had done must have worked, but i didn't really want to believe it as it still doesn't really makes sense to me. But i have no other explanation. It was only 4 weeks ago that Abbey had a terrible reaction to a teeny bite of a biscuit. She screamed hysterically for 3 hours and had diarrhoea the next few days. After doing this technique she is now eating wheat every single day without any problems. There is no other way for that to be possible. I don't think it is possible for her to have outgrown her reaction in a month. I have heard that the technique needs to be done a few times to hold its effectiveness but after that patients should be allergy free forever. I will be taking Abbey again next week just to be on the safe side. There is no way i want her to go back to the life she had before of not eating anything. Even if i have to take her to the chiro every few weeks it will be totally worth it. It is the most amazing experience seeing her eating and totally loving it! We are so happy and so thankful to God for answering our prayers! He deserves all the thanks and praises! 

Ok so now on to what Abbey is eating. Here is her new safe list:
Rice

Chicken

Dairy

Wheat

Pumpkin

Potato

Apple

We are still trialing foods slowly to make sure there are no problems and so we know if she does react to something we know what it is. Today we have started trialing eggs. I got to make her some apple muffins and got to use all 'normal' ingredients. It was very exciting!!

 

So sick of waiting!!

Well it is Friday now and we have been in Perth since Tuesday, waiting, waiting and waiting some more for an available bed at PMH. It is getting beyond frustrating! Reuben could be at home working and we are paying for accommodation for nothing! But ah well, there isn't much we can do about it. Hopefully we get a bed over the weekend. 

The kids have been really good though and are loving our apartment. I am very glad now i found a house to stay in and we aren't stuck in a motel room. We have been doing some site seeing and shopping, but because we are constantly waiting for a phone call we don't want to risk going too far away from Perth City and losing our bed to someone else if we don't get there on time.

Thanks to everyone for their thoughts prayers and kind words. I'll keep you posted on when Abbey actually gets admitted.

Goodbye

Just a quick post to let everyone know we are about to leave for PMH. I'm a bit of a nervous wreak but that is mainly because i have no idea what is going to happen once we get to Perth. We don't know if we will even get in today as it depends if they have a bed available. And i don't really know what tests they are all going to do on Abbey. I really hate the unknown and not really being able to plan anything. But i guess i'll just have to get over it and learn to take things as they come.

I'll try keep everyone updated as much as i can and I hope you all have a really nice week!

Everything is sorted! Finally!

I FINALLY found somewhere to stay in Perth that is relatively close to PMH and also not to expensive. Its so nice to take a load off. I have been majorly stressing about it! Our appointment is now next Tuesday the 7th of August. Thankfully we were able to change the date and didn't have to rush to Perth Tuesday just passed! I am so nervous about going though and all the tests Abbey is going to have done, but i'm also super excited that maybe we will get some more answers. It is getting more heartbreaking by the day seeing her unable to enjoy food.

Talking about food, I restarted feeding Abbey pumpkin on Sunday. Things have been very up and down since then and i'm a bit unsure how it's all going to go. Some days she has good days and is very happy, but other days she is so miserable and clingy i don't know what to do with her. She doesn't have diarrhoea but her last poo was very acidic green and runny. It was instant bum burning and smelt terrible. That was yesterday though and she hasn't done any today. She has vomited a few times. 1 big one on Monday and a few smaller ones since then. She is also spitting up quite a bit and gagging lots after bottles and eating. We will just have to wait and see what happens i guess.

Thanks to everyone who helped me search for accommodation and for all the very kind and thoughtful offers! It reminds me again of what a blessing the communion of saints is!