Monday, December 27, 2010

Sat by the phone all day - then missed the call.........

Since I wasn't able to get Allie's endoscopy and colonoscopy results last Thursday, today was suppose to be the day.  I called Dr. Brown's office first thing this morning and left a message that I wanted to talk to him (not his nurses) and I needed him to call me today with Allie's test results and to discuss her new diagnosis of having a severe corn allergy.  Well, I sat by the phone all day waiting for his call.  Finally at 5:00, I figured he wouldn't be calling so I was safe to leave.  Well......that wasn't the case.  Dr. Brown left a message on our answering machine at 6:30 tonight.  We arrived home at 6:45 so I called him back right away.  I got the GI clinic's night call person and she offered to page him for me.  I debated but then decided he should be able to have a quiet evening at home with his family too.  So, after waiting all day and waiting so patiently for her results, I never did get them.  I'm a bit disappointed but there is nothing I can do about it now.  I will call Dr. Brown's office again in the morning and wait patiently for his call.

I also talked to our ENT's nurse this afternoon.  After doing a lot of research on corn allergies, I discovered there are several different types hypersensitivity reactions and I need to know which type of reaction Allie had.  Also, now that I have research this whole corn allergy in depth and discovered corn is in a TON of food, I need to confirm with Dr. Edmonson that Allie cannot have any corn AT ALL.  I know he told me on Wednesday that we had to remove all corn and corn products out of her diet, however I guess I just need to hear it one more time.  Unfortunately, the nurse was not able to answer any of my questions and she said that Dr. Edmonson would call me hopefully tomorrow.

Removing corn from Allie's diet is harder than I originally thought.  Seriously corn is in almost everything besides fresh fruits, vegetables and meat.  Even chicken could be considered to have corn in it since chickens eat a corn feed a lot of times.  Our family of 4 took a trip to the health food stores here in Wausau and we got a couple snacky items for Allie.  The health food stores didn't have a ton of stuff but it's a place to start.  Seeing our family in a health food store was quite a site - as many of you know, I was brought up eating dessert first so healthy hasn't always been my style :-)  We are being as careful as possible not to give Allie anything with corn in it but she doesn't understand yet that it will make her feel sick.  Just today she had a melt down because I wouldn't let her have her gummy bears - it's one of her favorites.  I anticipate a lot of meltdowns until she is old enough to understand her corn allergy.  So now, we just plug along and try and keep Allie corn free.  We are trying to decide what to do with the rest of us....go corn free or not?  It's not really fair to Allie if I continue to cook with corn products because then she cannot eat them, however it's not fair to Chloe if we take corn away from her.  It's a tough decision and we haven't made any final decisions quite yet.  We are still treading water and trying to figure it all out.  I'm not convinced this severe allergy is Allie's underlying medical issue but who knows.  I guess time will tell but even then, I'm not sure if we will actually know.  Allie has started vomiting again, even on her new Neocate formula.  The vomiting isn't severe, it's only once a day but it's still not right.   I'm completely convinced that Allie's little tummy just cannot handle much food at a fast rate.  She can hardly handle 4 oz per bolus feed even if it's plain water.  Anyway, I guess what I'm trying to say is that I strongly believe Allie's eating issue has something to do with her stomach volume sensitivity / volume intolerance (and her corn allergy probably plays a roll in her eating also)   

We had a wonderful Christmas and the girls of course got spoiled by Santa and everyone else.  I am happy the hustle and bustle of Christmas is over and we can get back into routine and back focusing on Allie.  I also need to start focusing on Chloe and doing things alone with her.  I feel that since so much attention has been on Allie lately, Chloe could use a little extra attention.  One of my biggest fears is that Chloe will feel left out because so much attention is on Allie - Allie needing a feeding, Allie throwing a fit because she's fighting her feeding, Allie throwing up, Allie up all night, Allie going to the doctor, Allie going for another test and the list goes on and on.

Here are just a couple pictures from Christmas here in Wausau......
The girls with their new pajama's on Christmas Eve

Got cookies ready for Santa - Allie picked out the chocolate chip because she can no longer eat them, what a kid!

Allie playing with her new puzzle

Chloe loving her new Hello Kitty blanket

Me and the girls - Chloe chatting on the phone and me and Allie laughing at something

Allie Rae with her special pancakes made by Uncle Mike

Breakfast on Sunday - typical not to see Allie at the table eating.  We no longer try to make her eat (if she is refusing) so in turn, she is almost never at the table for long.

Grandpa Ray giving Allie a bolus feed for the first time ever.  It was nice for me because it gave me a little break - thanks dad!

Our super silly girls


  1. That sucks on missing the phone calls! hopefully today you guys can connect. I also can understand about the need to hear something just 1 more time. :)
    We have dealt with food allergies in our home multiple times. My 7yr old is not able to have any dairy, and this includes soy and rice milk products. The only thing he is able to tolerate is almond milk. We went thru the same period of trying to decide how to handle everyone else and his special foods. It took a bit to figure out cooking. We still rarely have ice cream because it's impossible to find it safe for him. We also went thru a period where they cut out all gluten/casein. It's rough but you will make the choice that is best for your whole family and everyone will adjust! i promise!
    HUGS to all of you as you go thru this and figure out what works best!
    The girls look absolutely beautiful in the pictures and happy as could be!

  2. Great pics! Can't wait to hear what happens with the biopsy...


  3. I couldn't wait to find out how Allie came out on the allergy testing! I am glad for all of you that you FINALLY are getting some answers as to what is making Allie sick. I know it won't be an easy transition for Allie or any of you to give up the corn products but don't give up! It will get easier! Don't be afraid to ask questions at the health food stores. If you can find products online they may be willing to get them for you.
    See you next week!