Good days!! Yay!!

We have finally been blessed with some good days. 5 in a row actually! It's been so nice! Apart from one terrible night and one slightly fussy day she has been happy, smiley, barely spewing, sleeping great and just being awesome. Such a nice way to spend the holidays especially. She is such an easy baby when she is feeling well.

She also turned 6 months old today! Where has the time gone? I love her so very much and i can't imagine my life without her. Even with all the hard times she is so worth it. Hopefully the next 6 months wont be as difficult as the past ones.

Positive!

It seems that there is just one thing after another lately and it has really been getting me down. I'm finding it hard to stay positive. So i've decided i need to write down some of the positives in life. I know that i am greatly blessed!

- I have God in my life to help me get through all the hard times!
- I have 3 beautiful children!
- Iyla's and Abbey's allergies are not going to last forever!
- We have good days where Iyla isn't in any pain!
- Iyla has slept through the night for 4 nights in a row!
- It is summer and we have beautiful weather!
- Reuben is on holidays so i'm not dealing with it all on my own for a few weeks!
- I have amazing family and friends!
- I am apart of a very caring, loving and supportive church community!

Reflux meds # 2 = FAIL!!!

Some people already know this but i thought i better update my blog anyway. On Thursday, just after i wrote my last post my doctor called and said she would like us to try another reflux med with Iyla. I couldn't get hold of the dietician still so we were kind of on our own. My doctor read out the ingredients over the phone and it didn't sound like there was any food product names in there that i knew so i thought we might as well try it. She wanted us to try Zantac. I picked it up that day and decided to try it on Friday. I had to give her 1ml twice a day. I gave her the first dose in the morning. She spat most of it out. For the whole morning she was really happy. Then 4 hours after she had the meds she started spewing. She did small spews constantly for 2 hours and screamed A LOT!! At the end of the two hours she did a massive spew but was thankfully happier after that. On Saturday morning she did a disgusting poo that exploded out of her nappy and soaked through her clothes. It was also full of mucus. Since that fail i have learned that Zantac is made using corn syrup. Wish i had figured that out before giving it to her...sigh.

Reflux meds = FAIL

I've been meaning to update this for a few days but i've been crazy busy and haven't had time. As my title tells you, the reflux meds were a big fat fail. So frustrating!! The first 2 days were good, she was lots happier, was sleeping better but was spewing HEAPS more. This already made me a little nervous but it seemed to be helping for the acidic pain of her spew coming back up. The 3rd day, she was terribly grumpy and sleep became a huge issue. Every sleep she needed to be rocked (well really shaken) to sleep. I was getting more suss by then but decided to give it one more try. Bad decision! On Monday she screamed almost all day long. Like a hysterical, in agony, someone please help me kind of scream. It was awful!! She was constantly pulling her legs up, wriggling and squirming in pain and there was nothing really that helped. I tried a bath but she wasn't even happy in there. Every now and again a tummy massage worked for a few minutes but then the pain just came back again. Getting her to sleep was a huge mission, but thankfully once asleep she was so exhausted she managed to stay asleep for 2 hours. It was a well needed break. Her spewing also became insane. It was one projectile after another, all over me, all over her, all over the house. She only did one poo a day during the trail but those were light green, so runny they just instantly got soaked into her nappy and there were globs of mucus through it. We stopped giving the meds and within 12 hours she was back to her normal little self. Poor little miss.

Now i just need to wait until i can get in contact with the dietician. She isn't replying to my emails so i think she may already be on holidays. Looks like things will be at a stand still up until the middle of next month. I'm in no hurry to start solids so now i just hope we can keep her reaction free for a few weeks. My nazi floor cleaning has started as Iyla is getting very ready to start crawling. She manages to get her self all over the place. I'm getting a playpen from a friend (which i keep forgetting to pick up) so hopefully having her more contained will make things easier.

I also want to take the time to thank everyone for helping me through this difficult time. I haven't been coping very well but to see how everyone is so willing to make me meals and give me words of encouragement and support mean everything.
A special thanks goes out to my amazing sister! You are the best! And my mum who is always a willing ear to listen to my complaining and help out in whatever way she can. Love you both a ton!

Just another update

It's been a bit of a hard past week, each day has slowly been getting worse. Iyla isn't reacting to her formula (unless it's building up to that...hoping and praying it's not!!) but she has pretty bad reflux from it. She is still very spewy and now hates laying down as it seems to cause her a lot of pain. You can just imagine how this is affecting her sleep. During the day she is taking hours to get to sleep once she is tired. She constantly squirms, screams and has to burp and spew. It's very tiring and extremely frustrating. Even when we hold her she has trouble falling to sleep, although it doesn't take as long. It's just a restart of the battle once she is put back in bed. I have raised her mattress to a 40 degree angle but it's not helping much. She is also only cat napping. Sleeping only 20-40min at a time. Randomly she will have good days and then sleep 1-2hrs at a time but that has only happened three times in the past week. At night it is still a huge battle to get her to sleep but once asleep she isn't waking too often. Usually 1-3 times a night screaming because she needs to burp or spew. She is probably just so exhausted from not much sleep during the day that she just passes out. Thankfully when she is awake during the day she is mostly happy, although yesterday was a horrible day of crying way more then she was happy. Her poo is still normal so that is what is telling me it's not a reaction.

I got a call from the dietician this afternoon and we are going to get a reflux medication prescribed for her and see if that helps. I already have a doctors appointment on Thursday and will hopefully get her onto Losec. I know it can take up to 2 weeks to see any improvement, i'm just hoping it's sooner. It's so hard to see my little one in pain so much.

Once the reflux is sorted out, we are going to start Iyla on a thickened form of neocate formula called neocate spoon. She 'shouldn't' react to this but it has more corn in it i think as the thickener and there are still a few kids that do react to it. If she tolerates it, this will be her first introduction to a solid 'food'. It will also hopefully help for the reflux.

Once we know she is tolerating the neocate spoon, then we will start with solids. I'm guessing this is all going to take some time so she probably wont even begin solids until the end of January, early February. I'm in no hurry though. It's all too scary! She is starting to get very interested in food though, she watches us so closely when we are eating and is always trying to reach out and grab it. She will just have to be patient.

Poem about FPIES

Yesterday was a horrible day for poor little miss Iyla. I feel bad because i decided to start giving her the multivitamins on Sunday afternoon, obviously not the right decision. She had been doing so well on Saturday and Sunday morning and was finally over her reaction from last week. We did the muscle testing with the multivitamins and my arm was strong, which means she should have been fine with it. That was really the thing that made me give it to her. I want her vitamin D levels to be up before we start solids as we are hoping that will help her tolerate more foods. I gave her the vitamin drops at about lunch time and by that night things were already going down hill. She was really struggling to go to sleep and seemed to be in a lot of pain. She wasn't spewing any more then normal so i wasn't sure if it was the vitamins or not. That night was awful. She woke up so many times screaming and in pain. By Monday morning she seemed to be a bit better so i thought maybe it was just a fluke bad night. She was still a bit miserable and having trouble sleeping though. I gave her more of the vitamins at lunch time again. Because there was no real sign of reaction i wanted to try it again and see what happened. She was awake for an hour or so afterward but then when i put her to bed she only slept 20min. She woke up screaming blue murder and when i took her out of bed she did a massive projectile vomit. It was bright neon yellow as that is the colour of the multivitamin. 

For the rest of the afternoon it was a mix of screaming, crying, whinging, spewing, curling up in pain and not sleeping. I finally got her down for the night at 6.30pm. She woke a few times crying but patting her butt got her back to sleep ok. But then at 8pm she woke up screaming again. The poor little thing was in so much pain. As i was rocking her and trying to get her back to sleep i was inspired to write a poem about what it's like watching her have a reaction like that. It took till 10.30 to finally get her back to sleep properly, but then thankfully she slept good until 4.30 this morning. Hopefully today is better. We redid the muscle testing last night and my arm was VERY weak! Sometimes it does that when she has a build up reaction. I remember it with Abbey too. Definitely no more multivitamins though!!!

LIFE WITH FPIES…

The screaming has subsided now, I hold you in my arms.
I whisper softly in your ear, some verses from the Psalms.
You try to sleep, your eyes closed tight,
We all wish you to go night night.
But stomach pains will not recede,
A sleepless night just might succeed.

I watch your tiny body struggle, I kiss your clammy skin.
You wriggle, squirm and fight the pain, you bring your knees up to your chin.
Your breath is raspy, you cough and gag,
A massive vomit wiped up with a rag.
This misery I would take from you
It’s such a cruel thing for you to go through.

I stare at you and my heart just aches, I smooth your fuzzy hair.
Another cramp which brings a groan, it’s all too much to bear.
What can I do, but wait it out?
Just know I love you without doubt.
I’ll hold you close, for another hour
And pray that God will give me the power.