Cauliflower trial

So this morning I decided it was time to start feeding Iyla some cauliflower. Like usual she started with 1/4 of a teaspoon. She LOVED it! It was so cute and really really hard for me not to feed her more. She was really happy all day but did do a bit of screaming this evening and lots of painful refluxy burps. We'll see how she goes. Please pray her body wont reject this food!!

Teeth torture!

Teething has been causing some major drama in this household over the last few days. Iyla is cutting her two middle top teeth and with random fevers, and lots of random screaming and some very late nights she is making us wish they would just hurry up!! We are ready to start a new food as her drinking is back to normal, she has gained her weight back and her poop is also normal. But we need to wait for these teeth so that we don't confuse the pain from that with a possible mild/build up type reaction. Our plan for the next food is to try cauliflower. We have a list of foods to try first that are most popular passes with kids with FPIES. A vegetable is what the dietician wants us to try next, so we got all the vegetables on that list and did the muscle testing with them. Out of tomato, carrot, spinach, broccoli and cauliflower the last three on the list tested good. We thought cauliflower would be the nicest tasting so will go with that first. Praying hard that she will tolerate it! I'll update when we start.

Back to square one...sigh

Since Iyla's reaction two Sunday's ago her gut still isn't completely healed. She is happier and sleeping better thankfully but she is still doing random mucousy poos and even just a tiny suck on an apple caused reflux, lots of spit up and trouble sleeping. So it seems we are back to no safe foods for now. Iyla has also lost 300grams and it is still a struggle to get her to drink much. It is getting better but we are only managing to get her to drink 600-800ml in a 24hr period. Not really enough when she isn't eating anything. 

The plan now is to give her a full 2 weeks of gut rest and then trial a vegetable and leave the apple and pear for now. Hopefully we can keep her away from food on the floor during this time so we can all have a few enjoyable weeks.

Sleepless nights SUCK!!

Just when you think life is pretty good and things are cruising along nicely Iyla has another reaction and we are back to square one.
Sunday morning we started feeding her pear and Sunday night she had a pretty bad reaction with lots of vomiting and not much sleep. I don't think it was the pear though, it was too late after feeding her for her to have had such a bad reaction. I'm guessing she must have picked up something off the floor. I really hate not knowing what it was, especially seeing how badly she reacted to it. As far as i know none of her worst foods were eaten by anyone that day so obviously she has another one.
 
Since Sunday night we have barely managed to get Iyla to drink any formula or eat any food. Yesterday got a bit stressful when she went more then 15hrs without anything at all!! We ended up having to get very forceful and hold her down to force fluids into her. It was pretty horrible but we really wanted to avoid a trip to the hospital, having a drip put in would be worse. Over a few hours we managed to get her to drink 160ml of formula. Then last night when i woke her for a dream feed she drank 240ml. I was so happy to get her finally drinking something again. 

We still had another horrible night of screaming though so over the past 3 nights i have probably only gotten 6-7hrs sleep all up. I was sick with a horrible cold just before Iyla's reaction and the coughing and sore throat kept me awake for a few nights too. I really don't know how i coped with only a few hours of sleep a night for 8 months when Abbey was a baby. I am so exhausted now just from a week of it! I'm really hoping for a decent sleep tonight. Iyla is drinking properly again so that is a good sign that she is starting to feel better.

We will start trialing pear again when Iyla has a few days of being completely back to her happy self.

Some good news!

It is so exciting to post some good news. Iyla passed her Neocate Spoon trial and since then we have also started an apple trial and are ready to call that a pass too. It's been 5 days today and we weren't very strict with how much she had as we were sure there would be no reaction and she has had pretty much as much as she wants. She is having a few issues swallowing the puree but still loves being fed, loves the taste and LOVES spitting it all over me hahaha. She has been cutting her first two teeth and because i can't give her panadol or teething gel for the pain i have been giving her cold raw apple to chew and suck on. She thinks this is fantastic and can't get enough. It is the most amazing thing watching her eat! The enjoyment on her little face is priceless.

Over the past few weeks Iyla has still had a few reactions. One was my fault when i got a bit too confident and let her suck on a piece of banana one day. (It get so difficult not being able to feed her when she looks at me longingly when i eat!) The look of complete and utter delight on her face at the taste wasn't worth watching her in agony later that night or getting covered in vomit.
Another milder reaction happened while we were away for the long weekend. We aren't sure what it was from but knew she had been chewing on something. Just couldn't figure out what it was. We barely got any sleep that night but thankfully the screaming wasn't too much and she didn't even wake Beck or Zenon up who were sharing our cabin. For 2 days later she had a few explosive nappies a day and she completely lost her appetite. It was a struggle to get 400ml into her a day. Thankfully she is back to her normal self again.

Even though things are mainly going well, we still never know what will happen in a day. I have to stay on top of my cleaning so we avoid accidental reactions and i wont feed her again with something we aren't trialing. Sometimes i just feel a bit crazy and this whole thing isn't real when she doesn't have a reaction for awhile. She is such a normal happy baby otherwise. I hate how food is so dangerous!

So far so good!

We have been feeding Iyla Neocate Spoon on and off for a week now and so far so good. The first day she did some big vomits but was happy so the next day i gave her a break as it was also Abbey's birthday and i didn't want to ruin her day. Since that day though things have been pretty good. She had a slight increase in reflux and sleeping issues but that seems to be going back to normal again. Today i fed her 2 teaspoons and she is finally getting the hang of actually eating and not just spitting it all out. She was so excited to eat it. We haven't finished the trial yet but with things actually improving instead of worsening i'm very hopeful! Even though it's not 'proper food' it's still exciting!!

Quick update

Hi everyone,
It has been awhile since i have updated you all but nothing has really changed. Iyla hasn't been well the past few weeks. She has had random on and off fevers and a bad cold. She still isn't 100% so we haven't started any food.
I have received some tins of Neocate Spoon from a fellow FPIES mum to trial so if Iyla is finally better on Monday we will be starting that.
She has barely been drinking anything lately but has thankfully put back on the weight she lost with her diarrhoea plus an extra 300 grams. She now weighs 8.1kg. Nicely average for her age! She is extremely tall (73cm) so she is a tall and skinny little miss. So different from Connor and Abbey. Here is a recent picture of her. She is such a cutie! Love her to bits!