Thanks to Liv's sleeping meds (that they give in place of a sedating antihistamine during your first few days in the Peds Program), she managed to sleep the entire night (so rare in our world) and woke up in a surprisingly pleasant mood. She still had the pH probe in place, she was hungry and she was ready for her morning vitals - all in all, the night portion of the probe was a success! Okay, so Liv was going nuts for ice cold water all morning, apparently the cold helps the throat to not feel so funny - by way of "numbing". That's okay, I'll take this any day over the hysterics and sadness.
After morning vitals, meds and ointment/creams were done, she was really wanting to head to the playroom that had evaded her for the first two days - she just knew there was a world of *magic* in that room. I agreed, she needed something to take her mind off the pH probe, so off we went.....only to find it *gasp* closed! I asked the nurses if there was another way to get into the playground - or another playground for her to play on. They gave us some bubbles to play with outside (normally for bath time for the AD patients) and told us to try the school playground (if you didn't know, NJH has a school on campus - it's pretty neat!) - but to be ready to hear them say we can't use it, because it does belong to the school after all. Liv heard this and I saw the ornery little spark in her eyes LIGHT up! I checked our schedule and we had some free time - off we went again. I was too chicken to go through the gates to the playground at the school and Liv was really set on breaking the rules, ha! We did some exploring instead and still did some "sneaking" around (Liv insisted we try to get to the ped's playground from the stairs out back, even though we knew there was a gate...she is *sneaky*) - her joy and her smile were both returning - probe and all.
Liv with her pH probe and the machine around her shoulder is the "diary" of sorts to collect data such as laying down, eating, sleeping, tightness in the throat, coughing, etc.....(you push the button during these recordings to keep track).
Running, jumping and playing around - just making me laugh my head off really.
Once we got done "sneaking" around main campus, we headed back in - just in time to find the playroom open. Liv was beside herself with excitement and started what would be the "art event" of her year...the entire two weeks was. Other than having the probe in, this day was quite uneventful and thank goodness for that, we needed the recovery time. As you can see in the following pictures, we pretty much took it easy until the probe came out.
We're what you call "serious folk", true story!
Patiently waiting on the nurse I was not exactly kind to the day before - to take the probe out (She would later become our favorite nurse - she is amazing!).
Yep, she is definitely my child.
She's so goofy! I posted the above pictures to show that she recovered from the day before without any issue or emotional toll being taken. (Note the "shark teeth" I mentioned in regards to the Hyper IgE Syndrome).
And then....finally....our 24 hours was up and it was time for that probe to come out - yeah! I'll admit, this part was a bit difficult for Liv too (nothing like putting it in), she's had enough IV's and needles that she is not a fan of having tape pulled off her skin. Once we convinced her to let us take the tape off, she was told to take a deep breath and slowly let it out...when she let her breath out, the nurse was quick about pulling the probe out of her nose. I was pretty grossed out by this as I imagine it to feel like the worlds longest booger coming out of your nose - yep, you're welcome for *that* happy little visual. This would be the end of our stay for Day Three (outside of the happy little video below).
Who says Asthmatics can't or don't like running? After the probe came out, it was like they let her out of a cage - she was a running maniac!
Prior to the above video, I did go to a class on Atopic Dermatitis (the reason I am now referring Liv's Eczema to Atopic Dermatitis or AD vs Eczema) - I will go into my notes from that class, but that's a post for another time. :)
Thanks for being on this journey with us (even if you're getting the details after the fact - it's appreciated).
It's been a bit since I last wrote, I know. I apologize.
Over the past several months (beginning in December, roughly) Liv has had several setbacks with her Asthma, her allergies and her Eczema (Eczema, from this point forward will be referred to as Atopic Dermatitis or AD). She has missed several days of school and been sent home early from school far more than I am/was comfortable with. I was mainly getting calls about her skin though - I know it's hard for some to tell the difference between "allergy itchy" and "AD itchy" and really, that's why she was coming home. It was to the point that every Thursday or Friday I would expect the call to go and pick her up. I'd do our wet wrap routine for her skin over the weekend with an extra bath a day to help her heal...only for the end of the week to bring an early dismissal for her yet again. I put several calls in to her Dr at National Jewish Health and set up an appointment with Liv's fellow for more answers (hopefully).
We sat and the fellow heard my concerns loud and clear: Liv's excessive flare ups, her growing anxiety (e.g. refusing to walk anywhere near eggs in the store, dreaming about foods she is allergic too, having flare ups/Asthma issues before trips with her dad, etc....) and her seemingly increase in Asthma issues that I also had a fear were more on the side of panic attacks. Do six year old children have panic attacks? You bet they do and her fellow agreed they might be, "she has a lot to worry about," were his exact words. I don't know if I felt good that he was validating my fears and thoughts, or felt horrible that they could really be true - regardless, it was time to do something and move forward. He did the usual physical exam and started asking several "new" questions (at a certain point, you get so used to the questions, you know which is coming next) about her skin and more importantly her teeth. I have affectionately referred to Liv as my little "Shark Tooth" due to her grown up teeth coming in behind her baby teeth. Apparently this is a common symptom with an extremely rare disorder; Hyper IgE Syndrome. Between him and the Dr., they were only half concerned, but enough so to do the genetic testing. *Side note - They took the swab to her cheek and we waited 6 weeks or so (genetic testing is not a quick process, that's for sure!) to find out we did not have a future of chronic antibiotic use as well as a plethora of other scary health concerns - she tested negative. Thank the Lord!*
Her fellow also mentioned to me that he believed Liv to be a good candidate for the Pediatric Day Program there at National Jewish. This is an outpatient program of extremely intensive skin therapy and research to further diagnose and help their patients. After talking with him and the Dr. together, I agreed - this was definitely what was needed.
Five weeks later, we would begin the journey that is the Ped's Day Program at NJH.
Today has been all about taking care of me, which rarely happens around here. I usually put my own health off until I'm so sick that I can't move. I suppose you could say that's acceptable considering I have two kids to chase after and keep organized, buuuut, it's really not acceptable.
So, after a long weekend of taking Liv to the Dr and then to the hospital's triage for a persistent Asthma issue, today was my turn. I know this is my blog about living with food allergies and our struggles, but really, this is a HUGE struggle for me. I never know when to say "enough" and make my own health a priority...that's about to change. I've made a commitment, not just to myself, but also to my children that I will be sure to be in the best health possible - in order to give them the best version of me that I can.
My journey started today, with a full on physical (I know you're jealous!) and well, it's going to be a bumpy ride as I have some serious changes to make - my sleep and eating habits are the first on the chopping block (ugh!!). I'd love to know how many other mom's like me (to sick kiddos and healthy alike), just don't put the effort into ourselves as we should be. I wonder how many mother's (again, to sick or healthy kiddos) like me, have found they've developed a serious case of anxiety.
Guess it's time to cut back a bit on this.....
And time to eat a bit more like this!
My anxiety levels are hit or miss, from the everyday worries of all the random things that "COULD" happen, all the way to the all out panic attack. If you've ever had a panic attack, you know what kind of stress that brings on. Yes, I've been in ER's a few times *swearing* to all that is good, that I'm having a heart attack. My heart is racing, my skin is clammy, pressure in my chest, hard to breathe, almost blacking out and just clawing to get outside to fresh air. It is the craziest thing I can ever imagine going through...I guess, literally (ha!). As soon as the Dr's get you calmed enough to tell you that your vitals are perfect, you're oxygen is just fine...if you're me, you laugh and just feel plain stupid.
In reality this isn't stupid at all, and it's very real for some of us. Today, it was real enough that my Dr did put me on daily medication for this. I begged her not to, but she really wants to try the lowest dose and see how I feel in a month. If I don't like it, she'll never bug me again...okay, that was a fair enough deal and now...I guess I'm officially one of the millions of people on this stuff. I'm bothered by this, and yet, I'm excited. I feel like I might have a "mental freedom" coming my way. I know that I'll never be worry free, especially when it comes to my children, but wow...to find myself again - just an amazing opportunity! I guess we'll all have to stay tuned for a month or so to see the outcome of this new journey!
**Yes, sometimes I probably share too much about myself, but in the spirit of being transparent about our life (struggles, blessings, day to day and all), I've promised I'd share it all....**
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.
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.
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.*
There are announcements and then there are ANNOUNCEMENTS. This will be an ANNOUNCEMENT.
Last week was registration time for Tai for school. I arrived and grabbed his folder which also had Liv's name on it, as she was all set to attend this school before the summer began. I filled out all of the necessary paper work and spoke with the principal about Liv not attending the school. This is where things get tricky. He was upset, not angry, but genuinely upset and told me he knows it was ultimately my choice, not his. He told me that whatever accommodations were needed, surely they could meet them. I explained I that my ex-husband and myself had made our decision. He accepted this and looked completely defeated. Good. Except somewhere within, my heart was a bit saddened by this. It may have been just a mixture of being around all the kids excited for school starting, all the staff talking to me and asking about the kids...I'm not sure exactly what IT was, but I started second guessing decisions made. Decisions I was previously content with. At any rate, I continued to just register Tai. I stopped at the nurses desk to give her Tai's emergency card. She is also a friend as her son is in scouts with my son. The nurse asked about Liv and when I told her our decision, she too looked defeated. I could see on the faces of the entire staff that they had big plans for Liv, plans that had apparently changed since I last spoke to any of them.
Finally, as I was leaving, I turned right back around and asked about half-day classes. The admission secretary told me that mornings were full and if enrolled, Liv would have to attend PM classes. Well, that was going to be it for me at that point. Liv would be in more danger going to a PM class than being at the school for the entire day. This is because there is no knowledge of what kids ate before coming to school, one touch from a child with mayo, egg or peanut butter and Liv could be on her way to the ER. The good thing about the AM class is breakfast. I don't know about you, but I don't know many kids that eat eggs for breakfast before school. It can happen, but it's less likely than a PB&J, or food containing mayo. So, in my head, I figured the second guessing was all for not.
All of this was not settling with me just yet. I poked my head into the Principal's office and inquired about the accommodations they could make. He told me whatever was needed, they would do. I told him that I may consider half-day class. This is where a turn of events came...a big turn. He then asked if I would be interested in am or pm class. I explained the am class being full and that I was only exploring the option as I was not sure of the pm class. He verified that this was our "home" school and explained that if I wanted her in the am class, she would be in the am class, period. What?! Was I imagining this all, or was he completely ready to do whatever necessary to have my child attend this school?! Still not too sure on my feet about any of this (WHAT am I doing?! We just got this all figured out!!), I set up the 504 meeting with him for last Friday.
I discussed this with some friends and we are all in agreement that something came down the line. Don't forget that I had been in contact with the office of Civil Rights. They had everything on record and a complaint ready to file. I definitely believe this changed the course of things for us. Liv's father and I discussed this at length the next day and came to the conclusion that while our daughter is "different", she deserves the chance at some normalcy. As long as the 504 meeting went smoothly and every accommodation I felt necessary was put into it, Liv was going to go to SCHOOL!
504 MEETING:
Wow, never underestimate the people who will be working, hands-on with your child. I first attended a meeting in the morning with the district nurse, she was unable to make the actual 504 meeting. She was simply wonderful and knew a lot about food allergies and Anaphylaxis, bonus! It was a lengthy meeting and I feel, a successful meeting.
ACTUAL 504 Meeting:
I walked into a conference room, and at first felt completely overwhelmed and intimidated. There sat SEVEN pairs of eyes staring at me. The meeting consisted of the principal, assistant principal, Liv's teacher and her assistant, the school nurse, psychologist and the PERA. Mr. Principal (we'll just call him that) opened the meeting by handing out the drafted 504. As we began talking, six of those pairs of eyes scoured the drafted 504 and proceeded to TEAR. IT. APART. You could see immediately how disappointed THEY were with it and brought up each and every one of my own concerns, without me ever having to say them myself. Seriously? Did this just happen?! These women (six of them were women) were on Liv's side, they truly were. They played devil's advocate in every scenario they could think of, and they thought of a lot! By the end of the meeting, Mr. Principal was stunned. He had no idea that I was in fact, not crazy and made no effort to hide that fact. I'm perfectly okay with that. I know my daughter has a team at school that is there for her, thinking of her and worried for her. I know my daughter is in as safe hands as I can possibly put her in, other than my own.
Sometimes (Read: a LOT of times) we as parent second guess ourselves. I'm okay with this because I think it means we are examining all options and only doing our best to give our children the best we can. With THAT, I have to retract my previous announcement of homeschooling and I'm excited to say that Liv's father and myself have decided after a successful 504 meeting that our little girl will be starting school next week.
**Homeschooling** is still an option for us, if at any point in time we become uncomfortable with Liv going to school.
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, 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.
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?**
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.
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.
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.
