I am so devastated right now. Abbey's cauliflower trial is a BIG FAT FAIL!! I was so sure at the start that she would be fine with it and when she started with the crying on the second day i didn't want to believe it. But after 5 days of horrible reflux, trouble sleeping, lots of crying and vomiting the last 2 days there is no doubt about it. We even kept the amount of cauliflower we fed her to only 2 teaspoons. After the crying already started on Monday we were hoping that by not increasing the amount every day we could get her used to it slowly. But obviously that didn't work either. It still amazes me that such a tiny amount of food every day can cause her so many problems. It is all so unfair for her, the excitement on her face that first day (and every other day) was priceless and i'm so sad i have to deprive her of food...yet again. Sadly we are back to square one.
Friday, 27 April 2012
Sunday, 22 April 2012
Finally, after a very long two months we have started Abbey on her first food trial. It was a very exciting moment to put the food in front of her and see what she thought about it. She was a bit unsure at first and kept looking at me like i was about to tell her she wasn't allowed to eat it. After i put the first bit in her mouth though she was onto it, and loved every second. I was a very proud and happy mum!
We are starting with cauliflower as that was one of the safe foods she had before her birthday. We are expecting her to do fine on the first few foods we try as we know that they were safe before. Her two months break should have given her tummy time to heal. But we are still doing a proper cautious trial just in case. Yesterday being the first day, i started by giving her just 1 teaspoons. Today, she will get 2 teaspoons and tomorrow 4. We will continue to double the amount everyday for 5 days and see where we are at. While doing this trial i also have to keep a very detailed journal of everything that Abbey does, what she eats, when and how long she sleeps, the colour, consistency and times she poops and also her moods. This will help me get a better understanding of what is going on and if we might be seeing a delayed reaction. (sometimes she can be fine with a food for a few days before she starts to react to it. The reaction gets worse the more she gets fed).
It is exciting and nerve racking to start this journey of food trails. I am so badly hoping for lots of passes and just want Abbey to be able to eat like a normal child. But i am also so scared of feeding her foods that make her sick. It is the worst thing to see my adorable little girl doubled over in agony and know that there is not much i can do for a the next few hours that will make her feel any better. I'm praying we don't have too many of those times ahead and that Abbey's stomach is able to tolerate more foods soon.
Monday, 16 April 2012
...I started this crazy, daunting, rewarding and beautiful journey of motherhood. It has been a real roller coaster of a journey to say the least! Before having Abbey, we thought that it wasn't possible to get a more difficult child then Connor. He cried almost all day every day for the first 10 months of his life. After that started the tantrums, the need of constant attention and the endless energy he seemed to have. Being our first we just didn't really know what we were doing and were just fumbling along.
By the time Abbey was on her way, we were hoping that having a sibling would calm him down and teach him that he wasn't the only kid in the world. We didn't expect the problems we were about to face with Abbey and because she needed so much of our attention and drained, especially me, of all my energy Connor was missing out on attention and the tantrums increased by 10 fold.
Thankfully learning about Abbey's allergies has been a blessing in disguise for Connor. Looking back on that first year of his life we know for sure now that he suffered from Milk Soy Protein Intolerance (MSPI). It perfectly explained the spewing, the diarrhoea, and the screaming. A few months ago he was still suffering from diarrhoea and i had been putting it down to a fast metabolism. But pooing 5-8 times a day was just getting crazy and toilet training was going to be impossible! Over the past few months i have also been looking into his diet and trying to figure out if maybe he still had a few allergies.
So far i have worked out that he is allergic to banana, chocolate (cocoa) and coconut. If he has only a small amount of these foods the diarrhoea will return and he will develop a rash around his mouth. Since cutting these foods we have also noticed a HUGE improvement in his behaviour! He is heaps calmer and his tantrums aren't half as bad anymore. It is so enjoyable watching him now and seeing his happy, fun loving, adorable character shine through. Although it has been a difficult 3 years he has been so worth it and i can't imagine my life without him! I praise God for blessing me with my 2 amazing kids. They have taught me so much!
So a BIG happy birthday to my handsome little man!
I finally feel a little bit more in control again and not so much on the verge of tears anymore. After one terrible week things are improving (up until last night, but that is a whole different story and not formula related as far as we know). I spoke to Abbey's dietitian on Friday and she suggested i lower the amount of formula powder i was adding to water. To start with i was following the guide lines on the tin which said to mix 8 scoops of formula with 170ml of water. Now i am adding only 3 scoops of formula to 190ml of water. That is a huge decrease in formula and we are really noticing it on how hungry Abbey is now. She is barely managing 3 hours between bottles during the day and is back to having 3-4 bottles overnight. BUT there are positives and that is that she is back to her happy self!! Her vomiting, spitting up and diarrhoea are all gone too.
Ok...so now we get to the whole other story i mentioned at the start. Last night, when i got home from church i noticed that Abbey was very grumpy and was spitting up heaps. I tried not to stress but after a terrible night of screaming, and waking up every hour or 2 i couldn't help but think that the formula was still not working. I was talking to Reuben about it this morning and saying that i thought we might have to cut back on the formula and mix it with some more goats milk formula again. It was then that he decided to tell me that he had fished a cracker out of her mouth while i was at church....that explained everything. After a pretty grumpy day today, and one mucus filled green poop she seems to be back to normal again. So that proves to me it was more the likely the cracker and not the formula. Phew!!
Tuesday, 10 April 2012
It has been almost a week since we started Abbey on the Neocate formula and things have been pretty rough. We are still mixing it with her goats milk formula, 60ml of Neocate to 150ml of goats milk formula because she hates the taste. But she has been one seriously miserable little girl. We have had almost non-stop crying, a few vomits and at the start horrible diarrhoea, then constipation and now diarrhoea again. The only good thing is that she has been sleeping a bit better during the night. Although she is taking till 9 or 10pm before she actually goes to bed she is only waking me once or twice for a bottle during the night. I am very thankful for that. It gives me a bit more energy and patience to deal with all the crying during the day.
I am still not sure if we need to stop giving it to her or not but i need to wait till Friday before i have that answer as Abbey's dietitian is away until then. We will keep pushing through for now and hope that her stomach will start tolerating it. From talking to other FPIES mums i have found out it can sometimes take up to a month for kids to get used to it. I really don't know if i can handle it till then but i guess if it ends up being for the better then it would be worth it!
Wednesday, 4 April 2012
Today my little pie decided to learn to walk and go up to size 2 clothes in one day! It's amazing how quick time goes and how fast everything just happens all of a sudden. She has had some trouble walking because she bends her big toes toward each other and then trips over them. Today i decided to buy some shoes that fit her and see if it made any difference. It really did! A few minutes after the shoes were on she was up and walking! She is still pretty unstable and more comfortable crawling but she tries all the time and i know within a week or two she wont even consider crawling anywhere anymore!
We have also gotten our script for the Neocate formula we are going to trial with her. I can pick up the tins tomorrow and we will start adding tiny amount to her normal goats milk formula bottles over the next week to see how she goes and to get her used to the taste. If she reacts to this formula her immunologist has told me that they will hospitalise her and do tests to see if there are any other problems with her digestive system that are causing her to not tolerate anything. I'm really hoping we don't have to do this so i have my fingers crossed this trial goes well!
Here is a video of her taking some of her first steps!