It's Time to Share the Good, Me Thinks.....

Well hello strangers! Or is it I, that is the stranger here? I AM strange - so maybe that counts for something. Anyway, on to the more pressing matters. I was going to write about my feelings on yet another viral posting on food allergy haters. I'm already bothered that the "bullied" have become the bullies in this scenario, but I'm not going to rant/vent on that. INSTEAD, I'm going to tell you a story of hope (I hope).

If you go back on my blog, you will see, it's not been an easy road for us - there have road blocks, persons being intentionally difficult and there have been times I felt like hiding inside my home and not coming out. Throughout most of those difficult times, there has been something wonderful though - Liv's school staff. Did it take an act of Congress to get her enrolled in school? Almost (I mean that literally). Do I think I've ever gotten through to her principal, about what it means to care for Liv? Probably not. Have her teachers, aides, school nurse, school secretary, parent volunteers and almost everybody else that cross her path protected her, cared for her and loved her like her own? You betcha.

Liv's first experience at her current school, was preschool. This is separate from the elementary, but shares the name and location. Her Director there could not have been more of an ally. She heard my concerns and she didn't bat an eye. She walked me RIGHT over (yes, that moment) to the teachers that would be in Liv's room.  These women would be the first, in a school setting, that I would experience. Would they cringe, would they tell me I had no right to ask for accommodations, would they tell me there was no way....? Nope. They looked at one another, looked at me and then looked at Liv - and they said, "We've got this. Give us a week to gather our thoughts, on how to best protect her, and we'll be in touch." They were in touch, and they came up with a plan that I just didn't even know was feasible in a classroom setting and one I never dared thought I could ask for. During the middle of that school year, Liv would have her tonsils out. Not only was her preschool staff concerned - the Director drove the hour and a half to the hospital...she surprised us in pre-op with some stuff to keep Liv busy there in the hospital and with a sign from her classmates. That was my first introduction to school and my food allergic child. Thank goodness for them - they are angels. Every time I see them, they still greet me with a smile and ask about Liv.

Liv with one of her Preschool teachers.

After preschool, and going into Kindergarten I hoped for much the same. Well, did I get slapped in the face with some hurdles there! You can read about those another time though (in earlier posts). We got over the hurdle and I met the staff that would be responsible for Liv's school experiences. In my first meeting with this staff, they all stared in bewilderment....what did Liv's health mean for them? How could they reasonably accommodate her, why did we have to walk into their school? Yes, you could read most of those thoughts in their faces...then something happened, their faces changed. They looked over at Liv who was peacefully coloring and listening in (she's been to every 504 meeting thus far). They saw it - the child who looked so "normal" on the outside, but clearly had some health needs. A collective deep breath was taken and then a meeting that lasted hours ensued. Ideas came pouring out from each of us and put to paper. We each took that paper home, read through the ideas and came back together a bit later to weed out the unnecessary and fine tune the necessary. They played the role of devil's advocate and played it well. This still meant I had parents to meet/work with. I was nervous going in, I won't lie, but I wouldn't trade that for what I got in return! These parents didn't understand food allergies in the way Liv's present - but they had zero issues with learning, protecting and becoming proactive! Did Liv have a successful year? Yes. She missed a lot of school due to illness, but in our world, that's pretty normal and to be expected.

Graduating from Kindergarten!!

First Grade: This was going to be a challenging grade. It was the first year we had the lunch room to contend with. I can't even, adequately, put into words the anxiety this brought on for me. I was terrified, pure and simple. So, at the end of Kindergarten all of us from the first meeting came together again at the end of the year, this time with Liv's future First Grade teacher. There it was again - that wide-eyed look of terror over having Liv in her class. This time, there was another teacher in the room to put her hand on the shoulder of the new teacher, telling her, "It's gonna be great, she's a great kid and her accommodations are not only doable, but become habit and so easily part of the day." The Kindergarten teacher then made her exit as we talked lunch room. Several ideas were shot down as quickly as we thought of them (shot down by all of us), but some had weight to them and are in place to this day. A week before the First Grade school year began, we met up for a less formal 504 meeting - just to fine tune the details, and the Specials (Art, P.E, Music) teachers popped by, much to my surprise! They too, wanted to know the fine details and be a present part of these proceedings. Again, a year that really went well - teacher got it, parents go it, staff was a team WITH me. This was the year that I realized Liv's peers were her advocates and allies - they even took notice and went the extra mile, all to ensure their friend's safety and inclusion in all they did.

Special delivery from her 1st grade aide, on her birthday!

This past year was Second Grade for Liv and would prove to be the most pivotal year yet. Her teacher was not only somebody that I already knew as she taught Tai several years prior - but my family knows her. She knew of Liv's health concerns, she knew Liv was going to be challenging and she requested Liv be in her class. There was no look of shock or bewilderment - sure some was a bit overwhelming at first, but she knew what she was getting into for the most part and she wanted my child to be in her class. She took all the necessary precautions like all the teachers prior. Once, after a lockdown in the school, I asked out of concern - what if Liv needed emergency help...her teacher looked me in the eye and told me, "Billie, I won't be leaving her side for a moment and I can tell you with certainty...if her life were on the line and it meant me breaking protocol and losing my job, to save her...she would be just fine and I may need a place to live." She joked at the end, but she meant that and I knew it. This teacher texted me throughout the year checking on Liv when she was out sick, or had an important Dr visit. She even showed a child level educational video on food allergies in Liv's class and then opened up the room to Q& A session with Liv. She didn't just care for Liv, she empowered her. She gave her ownership of her food allergies and this gave Liv's peers understanding vs fear of Liv's needs.  Again, another successful year of staff, parents and myself being on one team - for all of our children. I could honestly go on for days and days about her second grade teacher as she was so much more than I'd anticipated for Liv, and that's saying a lot considering I already knew she was amazing.

Halloween in 2nd grade!

And throughout all of the elementary years, at so very many meetings there has been the support staff: Secretaries, Counselor, School Nurse, District Area Nurse, District Director of Health Services, Specials (Art, P.E., Music) Teachers and Aides. These folks have done it all, from being a shoulder to lean on, being actively involved/concerned with Liv's hospital/Dr visits and medical tests. They've sent her home with flowers and even had flowers delivered on her Birthday.

 Flowers given to her by one of the school secretaries, just because. :)

All of this crazy long post is simply to put it out there - school is not always a nightmare scenario for Food Allergic children (or those like Liv that are also chronically ill). It's not always easy, there are a LOT of meetings, lots of phone calls, emails and hard work involved, but it has been my pleasure working with Liv's school. It can (and should) be a wonderful journey that is educational, encouraging, inclusive, empowering and full of wonderful happy memories. Thus far, that's been the experience for us, and I wish it to all of you as well!

Liv on the far left...on the last week of 1st grade on a field trip, saying goodbye to 1st grade and HELLO SUMMER! 

**This blog has been brought to you by a friend stating that "It's human nature to complain." Maybe she's right, but I took that as a challenge and my son's favorite saying came to mind, "CHALLENGE ACCEPTED." This is me not complaining and this is me spreading the good that can come from an FA child in public school settings.**

The Twisted Road to the Struggles Unseen

Oh hello, I do have a blog, don't I? Yes, I rarely keep it up and I rarely write on a regular basis; I know. Life gets in the way most times.

Really, I'm just writing to get it all out; out what's in my head (Thank you 4 Non Blondes; for that line). I've recently had a revelation and I'm just trying to digest it all. What is this latest of my many revelations? My youngest child is special needs.

How does a food allergic/asthmatic with eczema become special needs?  By having some of the most severe forms of each of those and throw in a case of Vocal Cord Dysfunction that is not near as controlled as we need to get it. (Read about VCD here.) The aforementioned diagnoses are the cake we call life; Liv's anxiety is the most delicious frosting on our cake. I will say, I have had a front row seat to see just how powerful the mind really is - since beginning counseling for anxiety, Liv has really made many strides in all aspects of her diagnoses and life in general. As I often say, food allergies are rarely as simple as what meets the eye.

Liv is what is known as a chronically ill child; her Dr informed me last year she should be part of the Starlight Child program. I looked into it, and that was about as far as I went. How could my child that is so rambunctious, joyful and full of LIFE, be special needs? How is it by the end of each school year, I look back and realize she's missed more than 30 days of school (with countless early dismissals due to falling ill or Dr appts)? It's no wonder we're all so exhausted and ready for summer; we've spent the better part of the years being behind and trying to get makeup work done and turned in (while keeping on top of current work). The thing is, Liv gets sick, she gets really sick and it happens often. To keep on top of her health, there is a ton of maintenance - at home and in clinic.

Now, more to the point of what I want to say. I'm not writing this out to complain, please don't misunderstand me on that. I'm writing this to remind folks that we all have battles that are unseen on the surface. I see jokes about food allergies or asthma, and I can laugh at them; I have a seriously wicked and twisted sense of humor. What I cannot listen to or tolerate is seeing my fellow mothers being judged and so harshly. I hear that mothers like my fellow asthma/allergy moms are "helicopter moms" and while I can see how somebody on the outside may think that; I highly doubt many of them would be able to trade lives too easily. I don't believe I'm any better than the next mother, but I do believe that given the choice - the mother or anybody judging my life wouldn't trade places for a moment.

There are days it's exhausting just to keep everybody fed and the dog walked, let alone get work done and an even smaller chance of free time (I'm stealing time that I should be using to walk the dog, he's lazy anyway ;) ). To know that so much energy goes into the lives of allergic children and to see my fellow moms struggle SO much to get schools to understand that our kids need certain accommodations makes me angry. To make schools understand that our rambunctious children could be taken from us due to one mistaken bite of allergic food (or even contact with it), is so difficult. Why? When I watched my child do a challenge to baked egg (which mutates the protein and dilutes it among many other ingredients), and go into anaphylaxis by her 3rd dose is heartbreaking. Those three doses didn't equal one full bite of a muffin and she went down fast. Within minutes she'd vomited twice, sneezed uncontrollably (more than 16 sneezes back to back), eyes were watering, coughing along with the sneezing and then it happened...her blood pressure plummeted. Her blood pressure plummeted after a dose of Epinepherine - Epi should cause the heart to race; Liv was in full anaphylaxis and the whole thing first to last symptom (before Epi began working) was within 7 minutes. Seven terrifying minutes that I could NOT imagine happening in a school that denied my child her rights to have a food free classroom and immediate access to her medication. Can you imagine that? Sadly, I'm seeing so many mother's go through this very ordeal with their schools and fellow parents...and today, I'm not sad, not complaining, not hopeless - I am strong, I am standing up and I am ANGRY.

I could go on and on, but lucky for you, the dog's walk time is ending and I must get myself to the school and meet with staff regarding the next school year, that should be fun, especially considering my mindset with schools right now (Liv's teacher being the extraordinary exception, I do have to say that...she's wonderful!). Before I go a shout out to the moms of the world. To the moms with struggles unseen on the surface or seen on the surface - hats off to you for all that you do.

My Daughter is a Warrior, She is My Hero.

Today, as I was driving home from work, I was listening to our local radio station, Alice 105.9. I knew that their annual 36 Hours For Kids had kicked off this morning and as usual, I tuned in. I don't ever change my radio from this station during this event. Children's Hospital along with National Jewish are both hospitals that are incredibly amazing and important to our lives! They've seen my Liv through so very much and have been a wonderful source of not only health, but counseling, comforting and that was for me, my Liv AND her brother. They never let us down.

Be a hero and donate HERE, they already have my information permanently on file.

Now, my aside: Today, the DJ's (forgive me for not using names, because I'm not entirely sure which one said what - I think this was a conversation between Slacker and Steve though)were saying, "I'm tired - this is an emotional toll and I don't want to do it anymore. BUT, I think about those folks upstairs and how many times have they NOT wanted to do it anymore??" I can raise my hand and say that there have been months that I have said those very words...daily. They went on to say that the staff are warriors and they are spot on, they are. I have to add that I do believe our *children* are warriors. My Liv is a warrior, every single day and she does it all with the brightest smile that you've ever seen. My daughter is *my* hero. The DJ's also said, "if you have healthy children, please go home and hug them...hug them for me. Hug them because they are healthy and you are just lucky." That is definitely something I can stand behind, if your children are healthy, be so thankful for this and today, hug them with a grateful heart. If you have a food allergic kiddo that is typically a healthy child, hug them and be thankful for that everyday health. My Liv has been struggling in one way or another since December, but this seems pretty typical every year. It's frustrating and I feel like crying daily, I feel like I can't make heads or tails of anything if it's outside of her health. I spend most days trying to focus on Tai, work, myself, my relationships and truth be told - they are all a little bit blurry right now. Last week, Liv missed 3 days of school, per her doctor's orders...this week, she was sent home early on Monday and Tuesday. I can't lie, when they called yesterday, I felt the headache I already had swell into one of those headaches that leaves you crying for mercy. I took a couple of hours to get myself together and let myself feel all sorts of self-pity and then that was it, it all had to be put behind me - in front of me was my smiling Liv. How can I NOT do this daily, when she stands there smiling and taking it all in without a second thought.

How do you turn *this smile* down? I sure can't.

Is There a Convenient Time for All Hell to Break Loose?

There we were starting the day off like any other - except it wasn't like any other...it was a *snow day*. Living in Colorado, we don't often get snow days, but when we're in the middle of a record setting snow storm, we get a snow day. I had so many cool things planned (thank you Pinterest!) for the day, but first breakfast. I asked the kids what they wanted and Liv pointed to the kiwi on the counter. I cut it open and we shared each having half, but Liv was in love and wanted another. It was at this moment that I thought and thought, but could not recall whether or not she'd ever had kiwi before. I didn't ponder that thought for too long as it didn't occur to me to worry about it much.

Can you see where I'm going here and find what I did wrong? For so long even in our crazy food allergic world, we've lived with a false sense of security. This false sense of comfort was because we've known Liv's "List" for so long now that outside of the usual worries, I never stopped to think about a new food being introduced (especially at age 6).

Anyway, back to the story at hand. Liv loved every single thing about this perfectly ripe kiwi and was washing her hands when I noticed some slight reddening of her face - but nothing serious. This moment is when I thought to myself, "CRAP! I just gave my daughter a food that I cannot recall her ever having before....in the middle of a blizzard!!! WHAT was I thinking?!" This thinking had to be pushed aside by rational thought and talking it through with her dad...I mean, Liv has NEVER had any issues of any kind with fruits - ever. How could I have known. Since Liv is also fighting off quite the cold, I called her allergist's triage dept and asked what they thought I should do. Given the fact that Liv was talking, no other symptoms were presenting, they told me to get albuterol in her and stay put (remember...the snow outside was busy breaking a 100 year old record) since we live an hour away. The nurse wanted me to call back 20 minutes after the breathing treatment so I could update them with our situation. Well, it was between that treatment and calling back that Liv started clearing her throat non-stop and telling me that it felt like it was "clogged". Again, I'm wondering how much of this is virus related vs reaction, but send my son for a neighbor to help hold Liv while I administer Epi. As the neighbor ran in (we're talking seconds here) and held Liv, Liv started chewing her lip and letting me know it was stinging - I knew then without a doubt what was going on. Then, for the first time in our food allergic journey, I used my daughter's Epi-Pen on her. As soon as I removed the Epi-Pen from Liv's thigh, I dialed 9-1-1 and was promptly transferred to the WRONG fire dept. I can neither confirm nor deny whether or not my potty mouth was in full effect at this point (unless Liv decides to quote me...) - at any rate, I got to the *right* fire dept and gave our info. They got to use in 5-10 minutes which is amazing if you consider the weather.

I've gotta say, from the moment I gave the Epi until we got on the ambulance and drove off, everything was so clear and textbook. While waiting on the ambulance, I even took the time to call Liv's allergist and update them, texted Liv's dad and second mom, instructed Tai on what to do after we left/made plans with the neighbor for him to go up to her place...it was a really crazy moment of extreme clarity. That clarity went out the window when we started up the first hill and promptly slid to the side of the road, fish-tailed up the rest of the hill, got cut off by cars that were on the road (for God knows why) that couldn't stop, started sliding down another hill...you get the picture. I couldn't sit in back with Liv so there was nothing I could do for her at this point, but I had to stop looking out the window (for fear of a sudden onset of panic), so I decided that updating Facebook from the ambulance was the best distraction. It's funny, the way our brain works in emergencies.

Everything went as it should, as far as the Anaphylaxis - the Epi-Pen turned the reaction around immediately. Once the Epi wore off, all symptoms came back except for the throat closing off (thank goodness!). After two back to back breathing treatments, a dose of oral steroids and a second dose of Benadryl - we just waited and watched. After three hours or so, the ER doctor confirmed that I was okay with leaving and we were released from the ER.


Liv's face after the Epi-Pen was given.


Getting home proved another journey, but we got a ride home, I collected Liv's brother and we went home to a wonderfully uneventful rest of the day. I wish I could say that I got rest last night, alas, I did not. My anxiety levels, I fear, have hit an all new high. I'm sure that has to be normal and even somewhat expected though. Guess I'll just ride it out for the time being and see where this new road leads.

Until next time....be well, be mindful and be ALERT for these food allergic kiddos!

Billie

Sometimes My Patience Does Run Thin......

If you know me on a personal level, you know that I'm often inappropriate, but probably rarely to a stranger. I have no care in the world for being "PC" because I have common sense and believe that means I should have common courtesy. I believe that when one practices common courtesy they should not run into a situation that isn't exactly "PC". I could be way off here and quite a bit more inappropriate than I give myself credit for - who knows.


What? This is me taking life seriously, ha!

What I do know is that there are several things that are said to me (yep, repeatedly enough that I have a collection of them), that I am just over. Here is my smallish (maybe? It's growing by the day you know) list of things that continue to spike my blood pressure for a small moment in time.

"Oh, the *poor* girl/*you* poor child." (do NOT say this to my child directly, ever...unless you prefer that I shred your words and hand them back to you...).

(Start with sad looking face) "Wow, Billie - she looks just awful." Wow, okay...thank you - I think? I don't know if it's validation folks want to give or what...but they should keep that, seriously.

"So, what do you *feed* her exactly? I mean, can she even eat anything?" Well, as most children do, she *does* in fact eat and a ton at that.

"The girl should probably be in a bubble." You know what...screw you (forgive me, I'm vulgar at times and that was mild).

"I just don't know how you do it, you're supermom." This doesn't bother me, so much as baffles me. I never know just how to reply to it. My lack of general sense of emotion with others might be my own issue here though. I just feel I do what any mother or parent would do in my situation...face it head on and go with it. Right?

"Miss, the 'sick waiting room' is over there...." Yep, this was just last week as a matter of fact, mid reaction. If only my filter on my mouth didn't work so well. I talk a big game, but at the end of the day, I just quietly mess with people...I just smiled at her and continued to sit where we were, she got uncomfortable, apparently and moved. Meh, whatever.

"Oh she'll grow out of it, I had a cousin with a [insert any random allergy here] and she/he got rid of it." What? Are you kidding me with this? What could I possibly do with this? This does not give one hope, it makes us feel that You. So. Do. Not. Get. It. You should just move on and go about your business at this point. In all honesty, don't you think we know this is possible and probably know the possibility of our own child outgrowing their allergies? Most of us are not in this blindly (I would HOPE).

Now, back to me not worrying about being "PC"...if I know you and you've said any of these things to me, I've probably corrected/steered the conversation. Chances are, I'm not offended either, honestly. It's the stranger aspect that kills me. I have never understood the random stranger offering unsolicited and *uneducated* advice and/or sympathy.

Well, I'm tired and have a Dr appt to get Liv to tomorrow. Oh, you didn't think that because it's a weekend that we get breaks from these things, did ya?

Goodnight and as always, thanks for letting me rant/vent/ramble or whatever else this can be classified as doing.

In a Split Second, The World Can Crash Down On Us.....Part Two

Somewhere in the midst of all that happened, I also got a phone call that the teacher had stuck herself on accident as she was sticking Liv with the Epi Pen. So as I sat there with a now calm Liv, I was worried sick about her teacher too. They informed me that the she (the teacher) was also en route to the same hospital that we were in. For that, I was extremely thankful, then I could not only check in on her, I could thank her. You see, the teacher, we'll call her K, played a HUGE role in everything going as smoothly as it did. She was quick to call me and not second guess that something was wrong, after all, she knows Liv's features and characteristics almost as well as I do. She knew right away that this reaction was progressing beyond anything she'd ever seen and acted, quickly. K not only called me right away, but she was calm (for my sake and for Liv's), controlled and ready for whatever she needed to do. She did so much more than I think I could really ever expect one person to do, and yet because of her, I DO expect Liv's teachers and caregivers this year to be on the same level that K was. Everything from her calling me right away, not hesitating to call 911 all the way to texting a picture to me was brilliant.

So, back to our stay in the ER. After an hour of sitting in her room, Liv seemed to calm even more. Something still was not right though, we weren't out of the woods yet. I couldn't see it (yet), but something was still brewing. I've never had that feeling of impending doom before, maybe I was crazy and just worked up because of the events leading up to this moment. THEN again, maybe I know my child and I knew something was just not right. I was not crazy, over worked or insane, Liv started tearing at her face and before I knew it she was red and puffing up all over again. Crap. THEN the lip chewing began all over. I called the nurse in, you could see on her face that she was not comfortable with this situation. The Dr. showed up right after the nurse walked in, he took one look at Liv and ordered ANOTHER dose of the Epi and Benadryl. I've heard of these recurring reactions, but never seen one in Liv before. What in the WORLD did she get into?! THAT was the million dollar question of the day, that's for sure. Again, Liv responded to the treatment and I was told it was going to be a long day for us. Typically they will watch a child for approximately 4 hours after being given Epi. We were going to be there well into the night and maybe longer. I accepted my fate and called my parents. My mom decided I needed a break, or just some company and came to visit us. Bless her, she brought all the ER necessities that I didn't have time to grab (other than her ER bag I keep in the trunk of my car).

Another hour had passed and Liv had napped...only to wake up flushed, feeling all around bad and....puffy. Great. I called the Dr (by now he gave me the number to his cell and hospital pager, NICE), he showed up pretty quickly and again the same orders for meds were given. I felt like I was in some crazy recurring nightmare.

The Dr and I came together to discuss what should happen as far as keeping Liv for observation or actually admitting her. We both decided admitting her was the best choice for the circumstance.

Two hours later we were being wheeled upstairs to begin what would be a 3 day stay.

There is still more to come on this post, but I will put that into another entry as well. I like to divide these stories into chapters, I promise to pull all the chapters together in the end. I will do this from time to time as you can see,this is just how I recall the stories in my mind.

On a side note, I'd like to take a moment here to mention another element of this situation. An outside, but incredibly important element, prayer (outside of my own quick prayer at the beginning). Do you remember prayer circles/chains, where you would call the first person on the list and they would in turn call the next, so on and so forth? Well, we had one of our own that day, but with a modern twist, Facebook. When my mom came, I took a moment to go out to my car and text a status to my Facebook. I was brief in explaining what happened that day, more importantly, I asked for prayer. I can't explain why I take these moments in emergency situations to ask for prayers, but my friends and family have never let me down...so again, I asked for them. I got Liv's ER bag from my trunk and checked the status, in 4 minutes or so, I had a handful of friends let me know they were speaking directly to God for us. All they asked for in return were updates on the situation. I could handle that. By the nights end, there were at least 30 comments from friends/family asking for updates, letting me know they were praying for us and all around being the best support they could be. The thing that amazes me the most about all of that, these friends/family are scattered all over the country and beyond even that. Friends across the pond over in England and even Ireland were thinking of us in these tense moments. Other than my mom, I was physically alone with Liv...physically. In spirit, I had a bevy of friends and family holding my hand and keeping me strong for Liv. I'll never understand what I've done to deserve such good people in my life and I'll never take that for granted.

In a Split Second, The World Can Crash Down On Us.....

You know, it recently occurred to me that I haven't written about Liv's most recent trip to the hospital. I can't believe I've left this story out, it's a whopper!

It was the first week in April. This past April (2010), actually. It all started off like any normal day. Liv was about fully recovered from having the Chicken Pox the week prior. I took her to her daycare where she took off playing right away.

That morning at work, I had to keep my cell phone put away because our VP was coming in for the day (of all the stinking days!). I don't know if it was mommy intuition, but at some point in the morning I felt a frantic need to get to my phone. I pulled it out and turned it on, only to see I had missed about 7 phone calls from Liv's teacher. At this point I was as close to a panic as I get (I don't panic often) and ran off to the restroom to call the teacher back. She stated that Liv was extremely itchy and developing hives on her face, none on her body. In an attempt to stay calm, I just told the teacher to give her Benadryl and keep her talking. Keep her talking because if she is talking comfortably, then she is breathing normally. She agreed and texted a picture of Liv's face so I had a visual on how things were going along.

Not even a full minute later the teacher was calling me back. What I heard next put my brain into a full frenzy..."Billie, when Liv gets breaks out...does she always play with her cheeks...like puff them out?" Before I could answer she told me Liv was playing with her tongue and biting her lips. This is it, I thought...a moment I've always prepared myself for, the moment I said, "Call 911 and give her the Epi....NOW." I heard myself say it, I thought for about 2 seconds before saying it, but it was so surreal. Here I was putting our emergency plans into action and I felt like I was moving in slow motion. I stayed there in the bathroom making sure to run through how to use the epi with the teacher and to call 911 first so they knew she was going to need an ambulance with Epi on board (did you know not all ambulances carry this life saving drug????!!). I told her to call me after giving the shot...I couldn't listen on the phone as she was calling 911 from the other line, more importantly I couldn't listen to my daughter scream when she was being prepped and injected. I am a super hero mom sometimes, this was not one of them.

"It's GO time!" I say that phrase a lot when it's time for something big to happen. As I gathered my wits and left the bathroom, I told my co-worker, "It's GO time, I gotta go..." She knew right away what that meant and locked up my desk for me. I ran by my boss and the VP, told them Liv was being transported to the hospital by ambulance, tossed them my keys and flew out of the door.

What do I do? Who do I call first? What is the quickest way to the hospital...WAIT, WHICH hospital am I racing to?! Oh God.....I feel this is a good time to send up a REALLY quick prayer...please be with my little girl and if you have one to spare, send an angel her way, you know...to let her know I'm on my way and keep her calm? These are just half of the thoughts that I poured through my brain as I jumped in my car and just started driving. I worked about an hour east from our home so I just jumped on the HWY and started driving west. I figured I'd get a call any minute telling me WHERE exactly I was going. There, one problem solved...sort of. THEN I called my ex-husband, no answer. Crap. I called him back, still no answer. Crap again. I called him AGAIN, he is active duty in the Army and I know sometimes he can't answer, I also knew if I called a few times in a row back to back he would get it and FIND a way to pick up the phone. This third time was the charm, he answered. "What's wrong????" I explained the situation...I don't remember word for word what was said, but I remember him asking if I was okay...that was the first time it all hit me, I was driving (at unmentionable speeds) and now I was crying, "no...no, I'm not okay." I remember him talking calmly and telling me I needed to calm down for Liv. I understood what he was saying and in that moment, those were the words I needed to hear. I hung up with him to see if I could find out where Liv was being taken. I called her teacher back only to hear all the sirens when she answered. Talk about a mind numbing moment in time. Once I knew where I was going, I needed to make arrangements for Tai. I called my parents, no answer. CRAP, not AGAIN! I called my mom's work, she wasn't there. Noooo! I called my dad again. No answer. At this point, I was exhausting all of the calm I had left in me. Suddenly it occurred to me to call my parents neighbors (they are close family friends and have been for years) the husband answers, thank goodness! He tells me that he will run over to my parents house and leave a note to call him right away or go over and he would let them know everything. He would also go pick Tai up from my place when the bus dropped him off. Okay, ex called...check, found out which hospital I was racing to...check, a plan in place for Tai...check. All of this took place in such little time, I'm still amazed to think about it.

I was finally at the hospital and RUNNING to the ER. The woman at the desk explained that there was no one with my daughter's name admitted yet. WHAT?!! No, this cannot be right..they told me THIS is where they would be. No sooner than I asked her to check again, she received a phone call. She looked up and put up a finger telling me to hold on a moment. She hangs up to tell me that she can't be certain it's my daughter, but there was a little girl en route that fit the situation I had described to her and they were about to pull up now. I heard the sirens as the ambulance approached. They pulled up and it was like being in a movie, I RAN to the glass and ripped the blinds to the side so I could see if that was MY little girl that was "en route". I swear it took forever (okay, about 30 seconds) to get out and unload her, it was my Liv they were pulling out on a stretcher. I could SEE her, finally with my own eyes...I could SEE her! I turned toward the doors to the area where all the rooms are and readied myself to charge through them...only they didn't open and a rather large male nurse had me in his arms before I could make another step...crap. I still had to wait. Finally she was wheeled by, he checked my ID and ran with behind a growing group of people also following her. We reached the room they would be assigning her to, the crowd of people only seemed to grow when we entered. I had fire rescue introducing themselves along with EMT's in training, Doctors, nurses, people from registration and even a Chaplin...yep, a Chaplin was put in place for Liv's arrival. I would later find out that on the way to the hospital she stopped breathing and was given a second dose of Epi. The crowd waiting for her was because she was in serious trouble and they needed a room that would accommodate whatever needed to be done. They had an intubation kit on the ready as well as a host of other equipment.

Anyway, the crowd thinned, eventually and Liv...what a stellar patient. She was so calm and strong. She answered all the questions they asked her and just handled herself as if she were so much older. I think God sent her the angel I asked for. She was given an IV for her steroids and fluids. Liv was responding to the second dose of Epi and the multiple doses of Benadryl she was given.

There is more to this story, but I think this is going to be one of those multiple part postings, this has been plenty long for now.

The Little Things That Get You Thinking

So today, I was reading a friends Facebook status and it was about her child's school having some pretty severe dietary guidelines for their lunches. Now, this was not in relation to food allergies, but more of a Food Revolution gone too far type of thing. The thing that most interested me were the comments to this. Not all of the comments as a lot were just about their child being picky and starving throughout the day. There was, however, a comment about a parent being thankful her child's school was not a peanut free school as her son LIVES on PB&J. So, this gets me thinking that Liv's school is not peanut free either and how many other parents just pack up multiple PB&Js for their children? I don't know how I feel about somebody being thankful for a food allergy family's misfortune. I don't want you to take that statement too far though. I don't believe peanut free solves much of anything because not all kids are just allergic to peanuts and if we're going to make a school peanut free, then why not milk free, then egg free, then wheat/gluten free, then soy free or corn free. You see where I'm going with this, peanut free is not the end all be all solution for us. At ANY rate, I was thinking...just HOW many peanut products are floating around these non peanut free schools and HOW would this parent or others like her react IF their school, or heck even just their classroom were to go peanut free?

The next comment read something to the effect that as a parent they should be able to choose whatever food they choose for their child and that they do not need a school system telling them what their child "will and will not eat." So, as a FA mother, I try not to read between the lines of this statement (after all, there might not be anything BETWEEN them). I would hope, that if it came down to it, and her child had a FA child in their classroom that she would react differently. What if she wouldn't though? What if she still wanted to send her choice of peanut/tree nut or egg filled delights for her child? In MY case, Liv's 504 and Civil Rights protect her from this kind of act, but what if? What if a parent of Liv's classmates reacts this way? I like to think that I'm a "big picture" kind of person and realize that my child's restrictions are infringing on the choices of others, but come on...my child's life vs your "choice"? I'm just not sure how I would react to this if approached with it.

All of this said, I have no real conclusion to this post. I'm not sure how I feel about a boat load of peanut or any other toxic foods (they ARE toxic to my child, so that is what I call them) floating around outside of my daughter's safe little bubble that is her Kindergarten room (bathroom is even in the classroom). I know they are floating around in her world outside of school, but I can control and contain that world any way I so choose for her. I. AM. A. CONTROL. FREAK. I don't know how I feel about that parent that will (eventually I will run into at least one) get that "why-does-my-child-have-to-suffer-because-of-your-kids-allergy" mentality, but I will say that my perseverance knows no bounds and my heart is my children. I will say that when it comes to the battle of wills over a child missing out on some probably not-healthy-at-all-treats, I will invite them into my world. I will show them the pictures of my baby during a reaction, I will show them her countless pages of hospital records, I will show them whatever necessary to see that my child DYING trumps their child missing out. I think this safely concludes my rant today, don't you?

*I guess I was in a ranty (YES, I use the word "ranty" even though it's NOT a word, and I love it) kind of mood. Sometimes it's hard living in our world, and sometimes I don't have all the strength it takes to always be tactful. I won't apologize for that, but I will thank you for bearing with me.*

Blessings

Okay, these past couple weeks have proven to be extremely busy for my family. First off, I'd like to announce that I was chosen to be an Enjoyable for Enjoy Life foods! What does this mean? It means that I am a brand ambassador for them here locally. It means that I am able to attend events as an ambassador and share the Enjoy Life experience with so many people. This is a volunteer position, but I believe it pays more than I could ever imagine.

With that, I will roll on with the next announcement, yesterday was our FAAN walk for Food Allergy awareness. The walk was what I would consider a success. There were over 1000 people there. This is small for most "cause" walks, but this was a big crowd for us. While food allergy sufferers are rare, the number is growing, at a scary rate. Of course, that rising number is why we walk.

I had every intention of attending this walk with my children as a walker, but fate had other plans for me. I was contacted last week about the ambassador position (which took me NO time to accept), and asked if I would be able to make a last minute change and attend the walk as an Enjoy Life ambassador. I'm not going to lie, at first I felt a little thrown off because change is hard for me sometimes. It didn't take long for me to realize that this was a big opportunity and I changed up plans.

I arrived at Wash Park (SUCH a beautiful park!!), set up my tent and stared in amazement at the amount of samples I was given to share with the crowd. Seriously, there were a TON! I would later be even MORE amazed by the number of samples that were gone after the walk. People slowly started approaching my (*ahem* Enjoy Life's) tent and the stories slowly started coming in. People started realizing that I was at this event, not as just a company spokesperson, but as the mother of a severely food allergic child. As people came to realize this, they started flooding me with their own experiences and stories. I couldn't believe just how many wanted to share little pieces of their world with me. One woman in particular stands out in my memory. She had never heard of Enjoy Life before and upon hearing what "allergy friendly" means to the product (free of the top 8 allergens) she cried. I knew instantly why she was crying. These were tears of relief, it was the weight of the world being lifted from her shoulders for just a small moment in time. She cried because she read the label (to verify as ALL FA parents do, ALL of the time) and saw that it indeed was safe for her son. She cried because there was a sea of people surrounding her that shared the same fears, concerns and stories. She was crying because she was overwhelmed by this relief. You see, many FA parents spend our lives in fear of the unknown, the fear of one tiny mistake, we just fear for our children's lives. To be able to set that fear down for just a moment means letting our guard down, that is a relief, but different from any other form of relief one will experience. This woman thanked me for being there and asked if she could hug me (I'm NOT the hugging type of person, at all), before I knew what I was doing, I was reduced to a few tears myself and hugging this complete stranger. When I look back, she wasn't a stranger, she was kin, definitely kin.

The emotions of the day kept rolling in. I had dads running over to the tent just to tell me how much they love Enjoy Life and how thankful they are for such a company to exist. I know this gratitude and I know it well. There were grandparents, cousins, aunts/uncles and even friends of food allergic children/adults who knew the brand and knew it well. I can understand that as well, my parents will scour a store looking for two things: Sun Butter and Enjoy Life. There were people who wanted to ask questions for co-workers and taking brochures to share with them. This compassion and sharing just made my heart one big beating smile. The blessings of the day were so much more than I had anticipated.

On another note, I am a firm believe in Yin and Yang. Yesterday's Yang being the walk and the many blessings that poured out. The yin of the day came a few hours later, when I got the phone call that my grandfather was rushed to the hospital and suffering from dehydration and pneumonia. My grandfather is no longer a young man (by any stretch), he is no longer a healthy man and so this trip to the hospital could quite possibly turn bad, really bad.

I think the blessings of the earlier part of the day carried me through hearing this news about my grandfather and stayed with me through the night. There is no doubt that we needed our Yang before our Yin yesterday. I tell my children that God has a plan for all things, big and small. Yesterday, as I was getting ready for bed, I reviewed the day in my mind and realized, I was looking at the blue prints of Gods plan for the day.


I have YET another announcement, but this one deserves a separate post. I will post it today (hopefully) or early tomorrow. As I said, it's been a busy busy time for us, thank you for your patience through all of this.

Holidays and Food Go Together Like Peanut Butter and Jelly (Pun Intended)

Holidays, ever notice how many of them there are? Ever notice how many of them revolve around food? Oh Easter, Thanksgiving, Christmas, Valentines Day and B-days, why must you be surrounded by baking cakes, pies, cookies and the like? Then there are you BBQ holidays like Labor Day, Memorial Day, Independence Day. I love barbecue holidays, but must they all be filled with macaroni and potato salads, dips containing mayo, cookies, cakes and pies...?

I can't honestly tell you which of the holidays above are the worst of our minefields. When you think of all the baked goods going into these holidays and Liv's egg and peanut/tree nut allergies, it's all a bit mind numbing isn't it? Barbecues are sneaky little things for us, you never know if a dip is made of sour cream or sour cream and mayo (and did you know ranch dressing has egg in it?). THEN, of course there is the fact that barbecues are plain messy. People grab a spoonful of the offending salad (potato or macaroni) and plop it on their plate (or dips)....did they drop ANY of it in another food on the table between their plate and the salad bowl? Did they use the spoon that was IN the bowl originally? Did any fall somewhere that Liv will come in contact with? Oh the barbecues, how we hate to love them.

Easter + Anaphylactic egg allergy = UGH! I don't think anything else needs to even be said here, do you?

Then there is the SUPER duper hidden part of two of the more popular holidays, Santa and the BUNNY. Now, you wouldn't think these super "fun" (yes, that's sarcasm, ha) traditions are dangerous, but these lines get busy and hectic which translates into parents bringing snacks. Oh, wonderful messy anything-to-keep-my-kid-from-melting-down, snacks. You see the problem now? Being surrounded by FOOD in a hectic and close proximity is a less than ideal situation, so we avoid it. Liv has had one pic with the Easter Bunny (prior to her allergy diagnosis) and that will probably be the last.

What do we do for the holidays? We try like mad to avoid all the dangers we can. Most of our friends are willing to count out potato and macaroni salads. I don't think I've seen a deviled egg in years now...not that I miss those suckers, at all. As for Easter, we do crafts and learn what the REAL reason for Easter is. This goes for Christmas as well. Some moms bake with their kids, we craft. B-day parties, sadly, we avoid. What I've learned through all of this is not only what we're willing to give up and do as a family because of this illness, but how little we miss all that is given up.

Aha! You thought I forgot Halloween, didn't you?! No way could I ever in life forget THIS holiday. The holiday of HOLIDAYS when it comes to being food allergic (not to mention that it's one of my favorites). This one will be tough when Liv has a classroom next year, but for now we keep it simple. We dress up and we go trick-or-treating...every year. You see, this is one of the easier holidays for us (by us, I of course mean *me*). We have neighbors that have known me since *I* was Liv's age and they are pretty much the best. They either make a special "treat bag" for Liv, or I take them some to give her. That works out pretty well, but then I have also have my "dirty little secret"...the "fake-out bag". What is a "fake-out" bag? Simple, it's an identical bag that Liv leaves home with, but filled with candy she CAN have. So, here is how the whole scam goes down: We go out and use the "safe treat bags" that the earlier neighbors gave as mid trick-or-treat snacking, finish up the evening and when we get home, I swap out Liv's real bag of candy for the fake-out bag. So there you have it folks, this is how we navigate the holiday seasons aka the madness.

Thank goodness for "Liv Safe" treats, as we call them in our home.

OUR version of "normal"....

And so where were we? Oh, that's right, nowhere in particular. After this last hospitalization of 2008 things seemed to have smoothed out some. There was the time two months later that an urgent care Dr gave Liv Zithromax for "double ear infections. Of course, she reacted and we rushed right back, this time to an ER. This is where we found out not only did she NOT have one ear infection, let alone two, but she is also EXTREMELY allergic to Azithromycin...super.

This would be followed up by a visit in the summer for a bee sting, well...we THINK a bee sting. Liv stated a "bee" stung her, but her Dr is inclined to think it was a yellow jacket as bees sting far less than we tend to think. Either way, she is labeled as bee/wasp/yellow jacket allergic. Of course, this isn't the simple not-too-bad kind of allergic, Azithromycin and the insect creatures are added to the Anaphylactic kind.

Other than these, we really just had a pretty calm year. Again, by calm, I mean one to two visits a month to the ER for "mystery reactions", several follow-up visits to the peds office, oh and the normal childhood instances that send far too many children to the ER...you know, like falling off the side of a trampoline (*sigh* allergic AND active, double whammy).

You might think that all of this is trying and wears on a person, and you'd be right - some of the time anyway. Most of the time, it's second nature or just like a second skin, to all of us. There have been times Liv has broken down in tears and wished she were "normal", but those times have just brought to light how strong our little family unit is. Tai has been quick to tell her in these times that she IS normal. She is just our "version" of normal (a phrase I use a lot around here). Our faith has also been strengthened by all of this, after all, God doesn't make mistakes and we make sure Liv knows this. I'm convinced that these allergies were given to our family as a double edged blessing, yes, blessing. You see, we are now FAR more aware of what we put into our daily meals. Tai, at only 11 years of age, is continually making better food decisions based on what we learn and teach together in label reading. Liv, I'm convinced is destined for big things...like helping to bring light to this subject. Yes, people realize food allergies are a problem for some, but do they know to what extent? I find that far too often, most people have no idea. Oh, and I now know how to spell Anaphylactic AND Azithromycin (see, always a lesson).

Now, I will say that my outlook isn't without fault or all sunshine and roses either. As of late, I've developed a fabulous case of anxiety issues. These anxiety "attacks" hit hard when they do and thankfully, not often.

**I'm not sure that this is a past OR present blog post, can we call it both?**

We Have to Know When Enough Isn't Enough....

Alrighty, returning to this blogs true form of past and present postings, here is a present post.

So, over this summer, I've debated back and forth SO many times on what I was going to do about Liv's educational needs this coming fall. I thought of holding off and putting her in school next year, rather than this year since her birthday is only 3 days before the cutoff date. I've thought maybe "No-Name" (read: the BIGGEST school district in the state) school district would get their act together and the 504 would work itself out, it has not. They've sent me a draft of what they'd LIKE to put in place as Liv's 504 and honestly, I'm not even sure WHY they bothered. They kept it as brief and with as little detail as they could legally get away with. I mean one example of it's negligence is the wording for her egg allergy. To quote the "drafted 504" she is allergic to "raw eggs (freshly baked goods)." This presents a big problem for us, Liv is more than just allergic to "raw egg and egg in freshly baked products", my girl can't even come in contact with TRACE AMOUNTS of egg/Albumin/Globulin/Meringue (well, you get the idea...there are a TON of names for Egg listed in foods). None of these names were mentioned in the slightest on the 504. You can see a better list of names for eggs HERE. This 504 also states that her exposure to allergens needs to be limited during times of eating and snacks. Um...again, a NO GO here. "LIMIT"??? Uh, how about no room for error? My last point that I will harp on with the 504 (there are many issues...but I'll keep it brief for you :) ) is its complete lack of mentioning her Epi-Pen. You see, the principal and I have been at complete odds about her Epi-Pen and where it is to be kept. He wants it in the office....in the OFFICE locked up! I told him that I don't care about policy, she NEEDS it with her at all times...ALL times. For goodness sakes, she carries her Epi Pen "on her person" 24/7 as it is right now, she has done so for years already. The point is, when something goes wrong **KNOCK on WOOD/God forbid**, she needs that Epi-Pen within SECONDS in order to save her life. Oh, I'm getting carried away, sorry. Anyway, it seems that it went from us going back and forth over the Epi Pen issue to them just forgetting about it entirely, most likely hoping I'd overlook this issue. Yeah, RIGHT. So....that's that on the topic of the "proposed 504 draft."

On to some more issues at hand with the school district/principal at "no name" elementary. The principal finally contacts me last week requesting to meet with me on 08/13/2010. Seems like this is okay and reasonable, right? Wrong. School registration is on 08/04/2010 and the first day of school is 08/23/2010. This gives me ten CALENDAR days from the meeting til the first day of school. Now, had the principal NOT dropped the ball last SCHOOL year when I went in to start this process...we would have this done ALREADY. I'm a little more than frustrated, in case you couldn't tell.

Now, I don't know a single person that would trust this school with their FA child and Liv's father and I are not about to test their efforts either. What's the decision we've come to?? Home school. Well, sort of. There is a public school that is tuition free and online. Sounds kinda extreme and maybe even a but weird, right? I know, I thought that also, until I checked out the website and spoke with several staff members. Here in CO, it's called COVA (Colorado Virtual Academy). If you would like to read more on this you can check out k12 here. It is fully guided and graded by an actual teacher, I would just be a "guide". Only about 15% of Liv's curriculum will be online. How in the world am I going to do this?? Well, just like everything else I do, with 110% effort. I work part-time in order to balance my work schedule with Liv's schedule (Dr appts with regular Dr's, specialists, emergency situations...just all around gives me more flexibility) and Kindergarten is only part-time. Somewhere in here, we will fit her required hours of school in and be a fully functional family...maybe not sane, but definitely functional. The other perk to this is I can delay her immunizations a bit longer. I know I could sign the waiver for regular public school, but why chance it with so many kids around? This way, it's just us and we can do the immunizations a bit more staggered.

What am I doing about the school?? I'm fighting like hell for the rights of future FA students there is what I'm doing. I'm just fighting them without my child attending there. With all the legislation being passed this summer in Colorado, the school doesn't really have a leg to stand on and I will be the voice our community needs. I can't see backing out now and letting another poor unsuspecting family deal with this nonsense. It doesn't hurt that I'm already an active member of the school's accountability committee which is a group of parents that serves as liaison between the parents of students and the district, bonus for me.

SO, at this point, I am publicly announcing that I've chosen to put Liv into Kindergarten this year, just not at our local public elementary school. As for next year, Liv will attend a charter school in Littleton. The principal of this school is a friend of mine AND has a child with food allergies just like Liv. She is wonderful and she totally understands the needs Liv has. It's just unfortunate that her Kindergarten is already full with a HUGE wait list, or Liv would be going there this year.

Sometimes We Fight More Than Just Food...Part Two

Let's just go ahead and pick this up in June of 2010.

I've tried with VERY little success to get a hold of the principal at "no-name Elementary". I've called the school's general number and left voice-mails as well as I've e-mailed him. No response. I've decided to take matters into my own hands and above/beyond the principal's control. I decided to call not only the school district's main office, but also our local office of Civil Rights. After getting an immediate response from The Office of Civil Rights, I suddenly also heard back from the district. Small miracle, but I even received an e-mail from the principal. I'm amazed at how suddenly getting back to me has become a priority.

There is a long list of what went wrong and where, but if you're ever in need of advice, I can definitely let you know what to watch for and how. I was caught completely off guard with just HOW bad our situation has been handled.

The district 504 coordinator has been in touch with me personally and taken over the whole process vs the principal taking any responsibility here. I will be sure to file a complaint with the district as well as a grievance against the school. I'm deeply saddened by this entire situation. I'm more than disappointed with the choice of FREE PUBLIC school we have available to us in our neighborhood.

I don't know where we're going from here at this point when it comes to schooling, but right now, nothing has me feeling okay with Liv going to "No-Name Elementary". That's sad.

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.

Sometimes We Fight More Than Just Food....

Present day posting**

Alright, so some of you may already know this story, but I definitely think this bears repeating.

Let's go back to approximately the middle of April 2010.

This would be around the time I approached our local elementary school with regards to a 504 for Liv. If you don't know what a 504 is you can check it out here. This initial meeting went much better than I had anticipated. The school's assistant principal was right on board with all the specifications needed to keep Liv safe. Wow, this is going to be a great experience is what I thought. Well, I've mentioned before, it's not often things go exactly as planned for me. This situation would prove to be no different.

Let's move forward to 04/28/2010. I go to this elementary school for a casual parent meeting. You see Tai, my son, already attends this school and I volunteer there. Back to my point, we were having a meeting with the principal over some parent concerns regarding the cafeteria and lack of recess time for our kids. This doesn't seem to have anything to do with Liv, does it? I wouldn't think so either, except this is where the principal of the school brought it upon himself to bring Liv and her 504 up. Yes, in this very public setting in front of other parents! I tried to let it slide and side-step him at every bait. He proved my side-stepping skills to be well, less than what I was hoping for. There was a point in this meeting that he mentioned another family that WAS going to do a 504 for their child (who has a peanut allergy), but chose not to because their child would be so segregated. He also took it upon himself to give this family my information to contact me and be a "support" to me. This went back and forth for some time, even going as far as making other parents uncomfortable. In the end, he was totally frustrated with me and told me that I was looking at this 504 situation with negativity. I offered him the same bit of advice right back and made my exit. I. Was. Not. Happy. In fact, I was the furthest from happy I'd been in a LONG time. There are many things wrong with how the principal presented himself in this situation. First off, you never without the permission of parent/guardian, bring up a private medical matter publicly. Secondly, he assumed I didn't already have a support system in place and freely gave our info to another family. Now, I might sound snobby, but I have a wonderful support system in place as I strive to be as active in the "food allergy" community as possible and quite honestly, to compare one child's allergic life to another in such an uneducated manner is just absurd. Third thing he did wrong here, a public school is required by law to follow the guidelines in place for implementing a 504. After all, this is a section of the Rehabilitation Act of 1973 we're talking here.

I leave this meeting feeling somewhat defeated and quite frankly, ANGRY. Angry that I let myself get trapped into this good for nothing argument and then let the principal get the best of me. I would be back, and I would be back with support, education on this issue and so much more.

Later in the week I spoke with the assistant principal, she was still more than on board with everything and started putting things in place. She had me sign a release for the district's area nurse. The area nurse was to call Olivia's allergist and confirm the severity of her allergies. Well, this call took place...sort of. The nurse called and spoke with Liv's allergist's nurse, only to confirm there was in fact such thing as a "contact" allergy. She then argued with the allergist's nurse about this being true. UGH, here we go again with this negativity.

I'm beyond frustrated now and schedule a meeting with the principal. I have many issues that need to be addressed, in person. Initially, I was prepared to go into this meeting angry and letting him know I was angry. Good thing I was talked out of this course of action. I went into the meeting with a three ring binder that holds about half of Liv's emergency room records and my notes from her Dr visits. I had all her meds and I even took Liv with me. I quietly sat down and laid everything out on his table. I got a bit of the reaction I was going for...he looked perplexed, but also a bit shocked by all of this.



This shock was short lived, it didn't take him long to find his stride again. I did point out that he violated my daughter's civil rights by speaking publicly about her 504 and diagnosis. He apologized and we're making progress! Nope, that was where it all ended and he again, went on to tell me that I was asking too much and he didn't see how it could work. He pointed out that there is always human error, and went on to push the epi pen issue. What is his stance on the Epi Pen? Lock it in the office, at all times. Um, I will NOT agree to this. Liv's Epi Pen WILL in fact be wherever she is at any and all times. I promised him that this would be put into the 504 and enforced. I wish I could say this meeting ended on a good note, but it ended right there. He was over it and so was I.


**In an effort to keep this from dragging, I will continue this in a separate posting**

Just How Do I Re-Pay Those Dedicated to Saving Liv's Life??

Yes, those who read this KNOW I am anything, but opposed to shameless fund-raising and I do have a favor to ask my friends, family and anybody reading this out there.

If you aren't the parent of a food allergic child, chances are you've never heard of KFA aka Kids With Food Allergies . If you ARE the parent of a FA child, or are close to a FA child, then you probably have heard of KFA. This is an organization beyond anything I could ever imagine! They are one of the leading organizations when it comes to researching food allergies and above all supporting those of us living WITH food allergies. This isn't an easy way of life, but it is do-able. If you've read my previous post about how I first coped with Liv's diagnosis, you know I was anything but okay with this. If you haven't read this post, go HERE. Without KFA, well...I don't want to THINK where we could be! I've been receiving their alert e-mails for as far back as I can remember now. If I had not been getting those e-mails I would never have known that Tempera Paint (an EXTREMELY common paint used in Kindergarten and Pre-School classrooms) posed a huge threat to my child! You see, a lot of learning tools contain allergens...some of which are deadly to my daughter. Surely you can see how important this cause is to me and my family and even Liv's teachers...past, present and future.

If not for the KFA support forums, I would not have met some of the WONDERFUL women I know that are also in this battle to keep our children alive. This world is a minefield for some of our kids, and it's nice to know there is support to help you along the way. I now attend MOSAIC meetings once a month...that is "Mothers Of Severely Allergic Infants and Children. I found out about this group from a local mom on one of the support forums. Through them, I've learned all I need to know when fighting the schools and district to keep them safe for Liv. I've learned our rights and that this is actually a Civil Rights issue because our children are considered disabled. Hard pill to swallow, finding out your child is actually considered disabled, but there again are the support forums to help cope. With this group of mothers in MOSAIC I've learned to find my voice. I've found it at times in frustration, but I've learned HOW to vocalize my concerns in a way that is heard, not blown off. This all brings me to right now and where we are now, had I not voiced my concerns in ER's, Dr.'s offices, and even Liv's previous allergist I might never have found the team of Dr.'s she now has. She has an allergist that voluntarily took her case from another Dr. at National Jewish. This is almost unheard of, but after a trip to the ER, he called us...on a Sunday morning from home to check on Liv. I voiced my frustrations and right then and there he agreed to put Liv on his watch. He pushed time in where he really had no time to see her, he called multiple times before her appt to check in on her...amazing. Within two months of having this Dr, Liv's Eczema is under control and we're moving towards eliminating some of her allergies! Yes, all of this has been the workings of KFA.

I ask myself all the time, how in the world could I ever re-pay this organization for all they've done for us...let alone what they do for so many more?! Well, I pay them back in a couple of ways, we walk for them. Every year we collect your generous donations HERE.

Just recently, I've been given another way to help pay them back and I need help from all of you. You see, Chase is doing a competition of sorts on Facebook. They are having people go to their Facebook app and vote on the small organizations to receive a donation from Chase. This donation would mean that one organization with the MOST votes gets a donation of $250k, 4 runner up organizations would receive $100k and 195 other organizations will be given $20k! This is HUGE guys and could do so much for KFA! If you're wondering what this has to do with you, here's where that comes in. All it takes is a few moments of your time. Go to the Chase App here, once you've done that you will need to "like" their app. The rest is simple, you type Kids With Food Allergies into the search field and it will take you to the right link, from there you can VOTE away! Each individual is given 20 votes so please, share this with your friends and vote for us!



This has been my shameless fund-raising for the day! Wouldn't you if this were your child in this fight?




Our love to all!

Surgery cont'd

My mom and I left the operating room to get something to eat (neither of us had any breakfast since Liv couldn't eat...we refused to eat in front of her). I honestly wasn't all that hungry,nor was my mom. My mom was pretty shaken by watching them get Liv ready for her surgery. We each chose bagels, ate quickly and went back up to the waiting room. By this time I really wished I'd thought out the bag packing situation a bit better...everywhere we went, so did our bags, UGH!

Between leaving Liv in the operating room, gathering our bags, grabbing a bite to eat and heading back up to the waiting room only 15 minutes had passed. We sat down in the waiting room for maybe 2 minutes and the receptionist came to tell us Liv was in recovery. Seriously, a 30 minute surgery done in about 15 minutes, crazy. We were lead down the hall to Liv's bed in recovery...we were about halfway there and I heard her. My baby was screaming at the top of her little lungs for her mommy. UGH, my heart just broke to pieces on the spot. I dropped all I was carrying (I'm sure my mom appreciated THAT one) and ran to her. There was somebody holding her and rocking her, but she wanted nothing to do with them and wanted her momma. I've never felt my heart just ache like that before. The moment I had her in my arms, she buried her face into me and just sobbed, I let a few extra tears slip. Before I knew it, she'd calmed and wanted a popsicle. Yep, right out of surgery she was ready for a popsicle, awesome! Later we would find out that was only due to the amount of drugs she was on. She couldn't feel a thing at that point. Her ENT/surgeon came in to inform us the surgery was a success and my little girl no longer had tonsils or adenoids (both were extremely enlarged). BTW, how clever were they to put Liv's IV in AFTER she was asleep for surgery?! I love Children's Hospital, I really do.

After about an hour in recovery we were escorted to her room up on the 7th floor. If you don't know this about Denver Children's Hospital...the 7th floor is also the oncology floor, talk about a powerful and MOVING moment to walk off that elevator. Liv was given her own room (as all are up on this floor) and was placed on this floor due to her even more than normal compromised immune system. After hours of fighting off her meds, she finally fell asleep.


Her surgery bears had already been sent up and were waiting in her bed for her.


So peaceful.


When she woke from this nap, it was anything but pretty. My poor baby was in a cold sweat from pain, screaming because she had feeling back in her little body and once again, crying for momma to hold her. I had no problem with holding her as tight and for as long as she wanted. The nurse was pretty quick with giving her some pain meds orally and in her IV. They were giving her some pretty heavy narcotics as she quickly calmed and was ready to color!

This was followed by her being hungry, so I ordered up some mashed potatoes and green beans for her supper. I made sure to mash up the green beans and gave her a bite, she did fine. The mashed potatoes however, had a slight error somewhere in the preparation process...they were salted. What happened after her first bite of the potatoes went just like you would imagine. She quickly spit it out, recoiled and cried. I couldn't figure out what was wrong, so I tried the potatoes myself and that's when I knew what happened :(. After the potatoes, even if offered a popsicle, she refused. The Dr., nurse and myself talked it over and figured we'd let her rest for the night. She would stay on her IV drip that night to keep hydrated and we'd tackle the food eating again in the morning. Easy enough, right? Wrong.

Once again, I feel this is a good place to pause in the story as we have a bit more to go. SORRY! I should have this post finished by tomorrow (maybe tonight if we call it a night early).

Have a WONDERFUL Fourth of July everyone, stay safe out there!!

Good Things DO Happen in This Allergic Life!!

Present day posting.

Okay, so yesterday was kind of a big deal for us and I have ....... skin testing RESULTS!!!

So I will skip the details for now and get to the nitty gritty:

Dogs - Negative (really though, we knew this)
Cats - Barely allergic (YAAAAAY! This has gone down!)
Horses -EXTREMELY allergic (awwww *pouts*)
All grasses - Negative
Juniper Pine Trees - EXTREMELY allergic (Boooo...those things are all OVER CO :( )

Now on to the biggies; foods.

Fish - Negative (we've always been told to avoid til she is older, yaaaay)
Shrimp - Negative (Also been avoiding)
Crab - Negative (Yaaaaay! Same as above, also been avoiding)
Wheat - Negative (Oh. My. Goodness! YES!)
Soy - Negative (WHAT?! YES!)
Peanuts - Positive, but not extremely allergic (Um...WHAT does this mean for us???!!!)

Now for the details. What does all of this mean for us? Well, the trees...those are an issue, but one for now that we can avoid at least somewhat. Wheat and Soy we can now move on to food challenges for! This in of itself is just huge for us. After the challenges prove she is not allergic to either wheat or soy....my girl can have her very first ham/turkey or whatever and cheese HOLD the mayo sandwich! No, my almost 5 year old daughter has never in her life had a sandwich....this is huge! This can open up a door to so many exciting new foods for Liv and our household! You see, whatever she is allergic to, we rarely or never eat.

Now, that peanut result is bigger news than I was prepared for. Olivia is STILL severely allergic to it if ingested or inhaled, but now if I were to eat a peanut and forgot to wash my hands (okay, so that is unlikely but you get what I'm saying), she will probably just get hives. We can also probably start the process of doing food challenges on PEANUTS!! While I keep my hopes to a minimum, her Dr tells me with a smirk (he is so awesome...seriously), "by the end of summer she may only be avoiding eggs and tree nuts....screw the school wanting to hold out on her for having too many allergies now." I loved that. For those that don't know, I'm currently entangled with the district about her going to school and what they HAVE to do for Liv vs what they WANT to do for her. This has been huge and I will write about that too. The Office of Civil Rights has even had to be contacted about all of this.

So, you might be wondering why I'm so excited, or if you have a FA child, you KNOW why I am so excited. Making any steps toward progress is a God send and in my life....a miracle. I feel so vindicated right now! Over the past years I've struggled with finding my voice in all of this. I've realized that Dr.'s don't know everything and it's absolutely okay for me to question them on everything. They hate me, I'm sure. Well maybe all but her current team of doc's that is. I've found that fighting for my daughter has finally paid off! You see, the allergist Liv is seeing now, she's only been seeing him for maybe two months and in two months he has turned my little girls world into one she can truly LIVE in!

**Due to the high numbers in her tree nut and egg blood work, plus her having anaphylactic reactions to eggs; Olivia was NOT skin tested for tree nuts or eggs...for safety reasons**

***I am proud to say Liv handled the testing with nothing but a positive attitude! She knew to not scratch and she didn't even try! We played the Lady Bug game the whole time and the nurses said they are going to buy a few sets of that game for kids in future testings. We CAN make change....even with the experts!***


She would pick this as her game piece ;)


This was after her skin test and they were awesome enough to numb her arms for blood work (that didn't end up getting drawn...)
I'm working on re-sizing these pics -- sorry about the size!