Q & A Time!

So, I asked and I received! I asked for some questions that you all might have for me in regards to our life and how we live it...and you asked!

1. Liv doesn't know a "normal" menu when it comes to food, when you do the tests for soy and wheat and say she can have those, how will you go about introducing those new foods to her?

This is a great question and one I've pondered for a long time. Actually, it's more like I've tried to envision what this would be like! Once Liv goes through the process of doing food challenges to wheat and soy, I imagine the first thing we'll do is go on a family hike and pack a lunch of SANDWICHES. We might even finish the evening off with grilled cheese sandwiches and not just ANY grilled cheese, but I envision buying a few different kinds of cheese and making it a "gourmet" sandwich dinner! I can't tell you why this is my first meal of choice for her though, maybe because it's such a basic meal for most and a such a hurdle for us. As far as soy goes, I love using teryaki marinades and I typically will make a pan of food marinated for Tai and myself, then a separate pan of food for Liv that has a marinade just for her.

From that point, I think it will be like watching a child in a candy store! If you've never really read food labels, soy and wheat are in SO much! This is going to be an exciting new chapter for us, and maybe a bit overwhelming even. That's okay though, THAT kind of overwhelming won't make me throw things across my kitchen like a crazy woman ;).

2. What are your concerns with Liv and the school setting? (kinda vague question but with her starting school a possibility what are your specific concerns all together)

This question covers quite a broad area in our life right now. Liv IS scheduled to start Kindergarten this year (I will release more details on that as they come, or I feel comfortable sharing publicly). I have so many fears with school coming up. First and foremost, I have to hand over CONTROL over things to basically strangers. Am I a control freak? You betcha, just ask my ex-husband (okay, don't, ha). When it comes to Liv, I have pretty much taken "control" to a whole new level, but I feel, with good cause. I fear that a teacher or PERA will forget to clean something that is an everyday common object, like a computer keyboard. What's so wrong with this? EVERYTHING. The child using it before her just might have had a PB&J sandwich for lunch, or pb&j type snack....heck they might have had breakfast right before of eggs. Nothing wrong with that child eating any of that and touching the keyboard, but if it's not cleaned properly...well, I try to NOT imagine the rest of that thought. I fear that her teacher, principal, PERA, nurse or anybody at the school doesn't take her food allergies as serious as they are. I fear that things go well for a good amount of time and anybody responsible for Liv gets complacent...only to make a mistake. There are many fears that run through my mind at any given moment. The biggest of these fears though, is the fear of a reaction happening and the adult with her at that moment panics, or doesn't react in time, or just plain can't deal with the situation. I know that my child appears 95% of the time to be a healthy, happy, hyper, imaginative and "normal" child, but in minutes, seconds even....she can be taken from me. Yes, that is something that is always possible, to everybody, but the chances are a bit higher in my child's case and she walks through a minefield of hidden dangers every single day.

3. How will life change for the 3 of you when Liv is able to start eating foods she's never been allowed?

Honestly, I hope it doesn't change a TON. Does that sound completely weird and sadistic of me? Well, we've made a tradition of cooking together and reading labels together while making our meals. We've made a point to make sure a good percentage of foods we eat are made of 5 ingredients (on the label, not the meal itself) or less. Label reading is such a habit though, I don't know that much WILL change. Some nights might be made easier by being able to make quick and simple dishes though. Oh, I might have to put a lock on the pantry, Liv is quite the food lover and well, I can imagine she will be in food overload soon!


4."It's not fair to picky children to limit what they're allowed to eat because of one child's allergy." What do you say to parents who want to bring in treats to the classroom but expect to be able to bring whatever their child likes?

I feel that I have to approach this question in a gentle manner rather than aggressive. If I had somebody ask me this personally, I would start by softening my entire demeanor. I'd have to say that I would certainly be able to sympathize with their situation. So....here is the best "script" have to answer that...for the moment.

"I can certainly understand what a difficult situation that is, and I too am in that same boat, only the food restriction for my daughter is life and death. I want more than anything, for you to know it's not my intention to take away from your child's experience here in school, my only intention by making these requests is to keep MY child alive and thriving. I know it can seem like I'm this overbearing and paranoid mother, but I can assure you I am not (enter props....her medicines, medical records and pictures of her having a reaction). You see, avoiding her food allergies is only a PART of our battle. These meds are taken by Liv every single day, some of them multiple times a day...just to help keep her immune system from being in a constant frenzy. (Point to her records and pictures) Sometimes all these meds and avoidance aren't even enough to do the trick. Liv has had WAY more than her share of ER trips and reactions in her short little life."

I do have a video that I would LOVE more than anything to share with the parents of Liv's future classmates. I don't know that the school will allow it, but I will share it here.


VIDEO



5. How has Tai handled these food allergies, being a non-allergic child himself?

Tai has been such an inspiration to me. He is an extremely laid back, super intelligent, but paaaainfully shy child. There have been times however that he's spoken up to strangers offering Liv food (samples at stores, bakery at stores offering cookies, etc...). He is quick to make sure others know they cannot just go offering his sister anything at all. I love seeing this protective big brother come out in him and I hope that maybe someday Liv sees all he is doing for her as well. He's had no problem giving up some very basic foods like eggs, cookies, peanut butter (and believe me, we were some peanut butter loving FOOLS pre-allergic Liv :) ) and an endless list of candies. Like I said, the kid is an inspiration. He does this in SPITE of all the annoying little sister things Liv does to drive him crazy ;).

6. Just how AWARE of her allergies is Liv? Does she know what all she is allergic to?

Oh yes, she knows her list backwards and forwards. This is vital information that I've made a point to repeat to her and have her repeat back to me several times a day...everyday. She knows what her Epi-Pen does and where it is at all times. She carries a backpack everywhere with her (it holds her Benadryl and her Epi-pen) she keeps the backpack with and on her at all times for the unfortunate event that she should somehow become lost in a store...or really anywhere. She NEEDS to have her meds with HER. She knows this and follows this. Does she understand how serious this all is, well...I think she gets it as well as a 4 year old can. She's been rushed to hospitals by me as well as by fire rescue with full lights and sirens. She might not fully understand "life and death", but she knows the sense of urgency around her in a bad situation.

Well, that is all the questions I've received this week, but please...PLEASE feel free to contact me and send as many as you like. I promise to read and reply to as many as I'm able.