I am beyond excited right now!! Although we haven't finished Abbey's apple trial yet, 6 days in and we haven't had a single problem with it. We are doing the trial very very slowly and today was the first day she got a full teaspoon. Because its going so good I have decided to start increasing it faster now and will do 2 teaspoons tomorrow, 4 on Saturday and so on until she is having a full serving of it. Lets just hope it continues to work for her. Its so nice to feed her something. She gets so excited when i come with her spoon. She spends the next half an hour licking it hoping to get more.
I have also finished the dress i was making her. I have added a photo below. Since the weather is so bad today i let the kids have a TV morning so i had a chance to finish it off. It looks so cute on her!
Life has been pretty good with a mostly happy little girl again. We had a couple of bad days after Connor fed her some potato chips but yesterday she was back to her happy self. It was amazing to have a full day of barely any crying. She played happily outside most of the day and just came to me to read her a few books or for bottles. Connor was pretty sick yesterday though, but having a fever made him very tired and he spent most of the day sitting in front of the TV. So overall it was a very peaceful day.
We also started feeding Abbey apple yesterday. We are giving it to her very very slowly and are just doing the tip of a teaspoon for 3 days and then slowly increasing it from there. Today she hasn't been a very happy girl though and we are really hoping it is either a tooth coming through or her getting Connor's cold that is causing this and not the apple. I don't think i can bear another fail. She was so excited to eat even such a small amount, it would be heartbreaking to have to deprive her again. She seems to think though, that since i let her eat one thing today that she should be allowed to eat anything and we had a few tantrums when we were eating because she so badly wanted it. Its the hardest thing not being able to give her something she so clearly enjoys.
I started my very first sewing project with my new sewing machine this past week too. I found a cool pattern on Etsy for a dress for Abbey. So far it is going well. Hopefully i can finish it this week and post a photo. I really hope i don't ruin it i've never done anything like it before. It's so cute though and will look gorgeous on her.
I was starting to think this day would never come again! But Abbey seems to be back to her happy self...hurray!! 3 weeks of screaming, spewing a couple of times a day and diarrhea were a bit too much for me to handle. But since Friday we started seeing small improvements every day. The reason for this i am guessing is because i started adding probiotics to her milk. I used to give it to her every day but somewhere along the way i stopped and had totally forgotten about doing it since. It wasn't until someone reminded me how good probiotics were for the stomach lining that i thought i would give it a try again. I have special probiotics i got from my naturopath. The normal one you get from a chemist have food products in it and Abbey reacted to that. Thankfully this one i am using now has been a great success. I'm not sure of all the ingredients but i do know that obviously it hasn't got any of Abbey's 'bad' foods in it.
I'll have to remember to give it to her everyday and hopefully we will see her get over her fails a bit quicker. Obvious the wheat was just too much on her stomach and caused really bad inflammation of her stomach lining. That is probably why she stopped tolerating her formula too and everything just built up.
After talking to Abbey's dietician yesterday we have decided to give her a break till Friday and see how she is going. We will hopefully have the results back from her stool sample too and we will see if there is anything else going on that we might not know about. We are also still waiting for a gastroenterologist appointment and hope we get in soon. Our case has been classed as urgent, but i guess there are still other kids/people that are worse off then us. Right now that is a bit hard to imagine, what can be worse then a 15 month old baby not tolerating any food at all? But i'm sure others do have worse and have probably been waiting even longer. I'll try be patient. I am just so desperate for answers and so desperate for Abbey to eat something.
I want to also take this time to thank everyone for all the thoughts, kind words and prayers. It is so nice to belong to such an amazing community and church that is always willing to help out. It means so much to me.
I am starting to get very very frustrated with this whole FPIES thing. The fact that i can't do anything about it, the fact that Abbey can't eat any food at all and the fact that now she seems to be reacting to her formula again just sucks big time. I wish with all of my heart that i could take her pain away. I would be happy to have it for her. If only she could just catch a bit of a break.
It has been a very confusing last few weeks with Abbey seemingly not getting over her wheat fail. Although the mucus in her poo has stopped she is still doing very explosive runny poos every day and most of them cover her clothes as well. She has also been super grumpy and having random 10-40minute long hysterical screaming fits where i can't do anything for her. In between these screaming fits she does have happy times and also times where she will just whine and hang off me. I'm sure to lots of people this may just sound like typical toddler behaviour and tantrums but if you know Abbey, you will know that this is VERY unlike her. Also we know that once the offending food is taken out of her diet she goes back to her happy self.
Abbey has also had a bad cold and we all had a bit of a mild tummy bug. We kept putting Abbey's behaviours, poo and the few vomits she did down to these things and hoping she would get better soon. But nothing has been changing. Then on Friday after she had a pretty happy day i decided to add another scoop of powder to Abbey's formula. It hadn't even crossed my mind that increasing her formula amount would start to cause problems again. She seemed to be tolerating it fine. It was still very diluted but we were up to 6 scoops to 240ml of water. According to the tin she should be having about 11 scoops to that amount of water. On Friday i went up to 7 scoops.
On Saturday Abbey screamed/cried almost the whole day. She wouldn't let me put her down but wasn't very happy even with me holding her. This is when the thought that it could be the formula, first crossed my mind. It kind of all made sense. Straight away i went back down to 4 scoops so that i could be sure this was the problem. Abbey had totally lost her appetite though and over the course of Saturday and Sunday she only had 5 bottles.
On Sunday afternoon she finally started becoming happier and this morning her appetite is back. The only problem is that she is still having some random screaming fits where she is in obvious pain.
I can't wait for tomorrow to hurry up so that i can talk to Abbey's dietician and decided what we can do to help her or if there is anything we can do.
I have added a video of one of Abbey's screaming fits today. If you can't handle seeing a very distressed baby don't watch it! I wanted to add it so that i can look back on this and know that it wasn't all in my head and that something really was wrong. So often i feel like its all in my imagination. When we are dealing with the screaming it is awful and i can't imagine anything worse, but once things get better and she is happy again i always think, was it really that bad? or was i just imagining it all? I guess that is the good thing about being able to block bad memories. If we couldn't ever forget or fade out the memory of the bad things our lives would be awful!!
Abbey's wheat trial didn't go well and we are back to square one all over again. On Wednesday we fed her 1 teaspoon of vitabrits (99% wheat 1% salt) at 8am. By 9am she started getting grumpy and doing lots of wet burps. Between 9.30 and 10.30 she started having off and on screaming fits, or she would lay on the floor moaning in obvious pain. Between 10.30 and 11.30 she screamed hysterically and basically non stop. There was nothing i could do to calm her. She kept curling herself up in a ball or throwing herself backward. She didn't want me to hold her or to put her down. I was very thankful that by 11.30am she exhausted herself and fell asleep. When she woke up she had stopped all the screaming but was still totally miserable and still did lots of crying. On Thursday we decided that after such a horrible reaction we wouldn't give her anymore wheat and by that afternoon she was back to being her happy self again. She still isn't totally better yet and now 3 days later she is still doing explosive runny poos and is still spitting up lots. She has also lost her appetite. Yesterday throughout the day i couldn't even manage to get 2 bottles into her. She caught up a little bit before she went to sleep by drinking 2 bottles in a row and then 2 over night but that is still not even 6 bottles in a 24 hour period. She usually has 9. Hopefully she is feeling better soon.
We are going to try apple next and start extremely slow. When she is over her wheat reaction completely we will start by giving her only the tip of a teaspoon for 3 days, then quarter of a teaspoon for 3 days, then half a teaspoon for 3 days ect. We are hoping that by starting so slow we can get her stomach used to it and have a least one food that she can eat.
Abbey's dietitian is also going to try get us another appointment with the immunologist at PMH as soon as possible. She wants to do a trail with Abbey there so they can see what happens and run tests on her while she is reacting and see what is happening to her body. She is also trying to get us in to see a gastroenterologist (GI). They will probably do some studies on her digestive system and see if there is anything wrong there. Hopefully this will get us some answers to what is going on with her.
Other then all the negatives of the last few days, we had a really fun day yesterday with the kids. Reuben was doing some work at a farm and i brought the kids there so they could see him using an excavator and go for a ride on a pony. They fully enjoyed themselves and Connor was right at home. He is such an animal lover and really enjoys big open spaces where he can roam free and get filthy dirty. I think we need to get a bigger block and some animals!
Today was a very rare day in our household. Both the kids were happy almost all of the day. It was so great to see them playing nicely together and to be able to put Abbey down without her becoming a screaming mess. I even got to spend some time crocheting - A hobby that i haven't had time to get into for many months. It was amazing as when i usually manage to get out my crocheting i have one or both of the kids crying at me to read them stories, or they do anything that will make me have to get up. But today both Abbey and Connor loved it and i became especially good at multitasking! At one time i was bouncing Abbey on my legs, had become a race track for Connor's dinky cars and was busy crocheting away a gorgeous beanie.
We were all happy! Its amazing how one day of normalcy can make me feel on top of the world! I feel ready again to charge head on into the coming challenges with a positive attitude.
- I have to admit that having a clean house does wonders to my mood as well!
Talking about a clean house, i had to clean out one of my cupboards today to hide the bin in. It is Abbey's newest find and she is most excited to find that there is FOOD in it. Something we really don't want her getting into when we aren't looking!
I also spoke to the dietitian today and tomorrow is the day we are meant to start our wheat trial. I am a bit apprehensive to start already because after writing to some great ladies on a facebook FPIES group i am a part of i have heard that it is best to wait a week or two after a fail to let the inflammation on the the stomach go down. If her stomach hasn't healed properly yet we will have a higher chance of another fail. We really don't want that. But after voicing my concerns to the dietitian, she seemed to think that there was no reason to wait any longer and that because Abbey has no safe foods, she really just wants her trying foods again as soon as she is back to baseline - having no reaction symptoms. I feel a bit torn as to what to do. We haven't been with this dietitian long and i really want to trust her professional opinion. But i also don't want to be doing the wrong thing for Abbey. For now we will stick with the dietitian and if we continue to see that the way she wants to run the trials aren't working with Abbey we will look into it again.
Please pray that this trial works and we can have wheat added to Abbey's diet!
