Oats, eggs and watermelon!!

Don't worry, we didn't mix oats, eggs and watermelon together.  =)  We've really picked up the pace on food trials lately and the above items have been the latest ones! We officially have passed oats, which is simply amazing!  She can't get enough of her oatmeal! It's such a great feeling to have both kids eating the exact same thing for breakfast (and even dinner lately, lol). 

This past Friday evening, we decided last minute to trial eggs. I've been thinking about and wanting to trial eggs for awhile now, so we finally just did it.  She seemed to do fine with the few bites she had, slept ok (up a little more than normal, but not a ton).  Saturday morning, she had a dirty diaper and my mom changed her right away and she had an instant blistering rash all over her bottom.  It continued to worsen the rest of the day and then calmed down on Sunday.  Poor girl, it was so sensitive and sore, we decided it wasn't worth giving her anymore eggs for awhile.  But now I'm left with...did she actually have a reaction to eggs? Sulfites maybe?  Or was it because B's body can't handle corn and chickens eat corn?  (I know that whole chicken issue sounds strange, but trust me, it can happen!!) Who knows, but we are staying away for now...no need to push through the pain of not even being able to sit.  =(

Last night, spur of the moment again, I gave her some watermelon. It was another food on our list to trial, so I just did it! Cody was having some and she was reaching for his plate.  I cut her up a couple small pieces and she loved it.  She cried and cried when I wouldn't give her more though.  I didn't want to overload her on the very first day of a trial though.  If a trace amount of a trigger food can make her vomit til bile and show shock symptoms, I defintely don't want to fill her up on a new food!

Oh! And she FINALLY got her first tooth!! At 13.5 months, wow!  =)

MUFFINS!!!

Brynn's favorite food: Muffins.  A fellow FPIES mom, who comes up with some amazing recipes, posted a recipe for Sunny Bunny banana muffins.  Well, Brynn can't have bananas, so we improvised and figured out something that works for her!  We used sorghum flour (new), potato starch, baking soda (new), sunflower seed butter, sunflower oil, and a natural cane sugar (new).  The first time I made them, I used pears, and just last night I made some with strawberries.  They actually aren't THAT bad!!  =/  The sunflower seed butter (tastes exactly like it sounds, lol), overpowers all the other ingredients, but Brynn LOVES them.  She pushes all other food to the side (well, floor I guess) and asks for more muffins.  She wants nothing to do with strawberries, unless they are freeze-dried. Maybe it's a texture thing again.  Oh well, she can eat muffins!!  This is super exciting--I can use that recipe and make bread, a cake...oh the options!!!!!!! Thanks Amanda!!!

She's still randomly gagging and spitting up from food texture.  Not really the vomitting anymore, which is nice, but I hope she gets over this gagging thing soon! 

Yesterday, we were at my parent's house and we were all chatting on what we were going to have B try next.  I, (sort of jokingly) said oatmeal, and my dad jumped on the idea and within minutes I was making her oatmeal.  I have no idea why I all of the sudden had such courage.  She has been doing so well lately with food trials and I just figured, why not? 

So far, so good. She did fine with 1 tsp last night and had 2 tsp for supper tonight.  Her rice reaction was after the 4th or 5th ingestion so we are not for sure in the clear yet....but like I said, so far, things are going ok!!! YAY!!! I'm feeling pretty empowered right now!!  She has passed every food trial since we switched her formula to EleCare.  We've had a few mishaps (wipe, juicer cross-contamination and increasing her probiotic too quickly), but otherwise, things are going SO WELL!  Thanks for all the continued support!!!

Variety? No thanks.

We have finally built up a tiny litte menu for Brynn.  Her safe foods are: pears, sweet potatoes, white potatoes, blueberries and now strawberries!!  We can also use sunflower oil and sunflower seed butter for cooking (however still need a grain to REALLY make something!!).  Great right? UGH. She has now decided to either gag and throw up while eating (texture issues) or just skip eating and throw the food on the floor.  There were 2 days last week where I decreased the amount of formula she took in because I was thinking she could actually have a little meal and some snacks in between the meals. But no, we are back up to the full amount again.  I guess we just keep trying and hope this is just a phase!!

Another thing I wanted to vent about is doctors.  The kids' pediatrician that they have both ALWAYS seen, pretty much from birth, is leaving the clinic we go to.  Trust me, I dug for info and found out where he was going, hoping it was just another local clinic, because we would have no problem switching clinics.  Unfortunately, he is going somewhere a little too far.  =(  When I first came to him with Brynn's diagnosis, he had not heard of it.  I was prepared for that, so brought him some info that our allergist had given us and had gladly accepted the info and appeared to be willing to learn along side of us.  Now that he is leaving, we have been forced to find a new pediatrician.  I did a little research and found one on the clinic's website and looked at her profile.  It said her special interests were food allergies and chronic illnesses.  JACKPOT!!! I was so excited and I thought maybe this was a blessing in disquise.  SO WRONG.  We saw her for Brynn's 1 yr appt and it was alright....nothing what I was hoping for, but after much thought, figured we'd deal with the situation and manage without a ped on board with the FPIES diagnosis.  She questioned me...no no....she DRILLED me on a couple different topics, one of them being, why on Earth I would bring Brynn to New Jersey to see a doctor.  She asked me numerous times how that appt would benefit Brynn and I explained to her that Dr J could possibly test to find out what foods would trigger a reaction for Brynn and maybe give us some direction in what we were supposed to do with Brynn's condition.  Why WOULDN'T we go?  If seeing this dr could in any way help our daughter, why not?  She just sort of shrugged and moved on. 

Fast forward to a couple weeks ago.  Our daycare needed some papers filled out for Brynn and her special diet so Danny brought them to the clinic, asking the receptionist to give them to our old doctor.  Danny's company also had some papers they wanted filled out just in case Danny would have to take some time off due to Brynn's health.  I picked them up a few days later and the receptionist had given them to the NEW ped to fill out.  So I looked what she wrote...on the daycare forms, questions were skipped, and it was just half-ass filled out.  When I got to the papers for Danny's work, there was a post-it on it reading "this needs to be filled out by the allergist or GI specialist, not me".  BULL.  Luckily, we had the allergist appt so I just brought the papers to him and he filled them out.  That pushed me over the edge.  I'm not looking for a dr that knows everything about FPIES, all I'm looking for right now is someone who isn't going to blow me off and say it's not real or it's no big deal.  Someone who will listen when I say Brynn can't have a specific medicine because of a previous FPIES reaction to it.  So if anyone knows of a great ped in the surrounding areas, please let me know! I friend of mine mentioned one doctor, and we plan on seeing her for the next appt. Wish us luck!

What to trial next? OATS???? That would be a HUGE pass for us, but like I said in a previous post, it could potentially be a HUGE fail as well.  Hmmmm