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.

I Have Become Socially Awkward and Yet I'm Invited "IN"...

The first week of school for both children has come and gone, all has been perfectly well! Tai, well what is there to say about that kid that hasn't been said? He loves his teacher, is the tallest kid in the school, taller than half of the teachers in his school, for that matter. He has also informed me that the school that he and his sister go to no longer offer peanut butter and jelly sandwiches, but they DO offer SUNBUTTER and jelly sandwiches! How cool is that?!

Liv's teacher has been an absolute angel. Okay, so that's a bit dramatic, but that is how I feel. She has jumped right on board when it comes to caring for my daughter in her class. For instance, the Friday before school started, Liv had some testing to do with the teacher...when we walked in, the room smelled gloriously of Lysol wipes and hand sanitizer. Mrs H (Liv's teacher) seems to be getting the gravity of our situation.

All of the above is great news, however, there is a new level of awkwardness for me now... play-dates. Doh! How did I not see these things coming? We've been invited on two right after school, the first being this Friday. All the mommies will be bringing lunches for the kids and then letting them play at the playground in the park. First off, yay for being invited into the social hierarchy of "mommy play-dates". Secondly, how in the WORLD does one ask all of the mommies to bring lunches NOT consisting of any egg, peanut or tree nuts?! I want nothing more than for my daughter to have the best social interaction that I can give her, but I have no clue how to manage both her allergies AND this new social world.

This might seem trivial to most people, the mommy play-dates, but it's HUGE. I've never really been a part of any play-date groups with Liv. I avoided those things with all that I have because to us, they are dangerous. If not dangerous, just awkward. It's not easy to present Liv's allergies without coming off as a over-protective, paranoid/psycho mother.

Ah, I have no real solutions to this predicament. I suppose for now I will just be thankful for being invited "in". I mean, that's all I can really do, right?

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.*

Retractions, Second Guessing and Right Decisions...

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.

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.

It's definitely been too long.....

WHEW!!! So sorry about that absence, I was working on a pretty neat project, which I will inform you about at a later date and time. *TEASER*, I know!

Well, I'm just going to jump right back in here. So we'll go right back to Dec of 08, Liv was released from the hospital and healing rather nicely from her surgery. That is, until 12/29/2008, when she woke in the middle of the night coughing and lips turning blue from having difficulty breathing. Now, I'm a fairly calm person and typically good under pressure so I give her a breathing treatment right away and call Children's. All seems to be going okay and Liv started recovering, for all of about 10 mins and the whole thing started over again. I again, gave her a breathing treatment and waited on the nurse to call back (she promised she would within 20 mins to check on the situation). The situation was anything but okay and I rushed Liv to the ER where they came pretty close to intubating her. Finally, after a slew of breathing treatments, IV steroids and raising her heart rate to some seriously scary levels, she was breathing pretty decently again. You could tell the nurses were concerned with her heart rate, I mean, when I saw it go over 200 beats MY heart rate started racing. Somewhere in there the nurse and I got our instincts in sync. We both looked up at the heart monitor, looked at each other, nodded (seriously...it was totally unspoken communication here), the nurse turned the lights off and I quickly got into this tiny little bed with Liv. I laid her on my tummy/chest and just rubbed her head and back. The power of a mother's touch is something I will never fully grasp, but within minutes Liv was sleeping and quickly reaching a normal heart rate again.

About a half hour later, the nurse returned and thanked me for keeping my composure, I tell ya...those nurse/Dr "kudos" mean so much to hear in these kinds of situations. She also informed me that they were preparing a room upstairs as Liv was being admitted. Um...did I mention this was almost New Years Eve? That's two holidays in one month that we ALMOST spent in the hospital and honestly, even that is okay, as long as my girl is healthy.

We spent the night and were discharged early afternoon on the 30th. Basically what happened was all tied to Liv's immune system. Since she had just had surgery, her already sketchy immune system (I'll explain why it's sketchy later in this post) was being compramised. Somewhere between being discharged after her surgery and her repeat visit to the hospital she'd picked up a respiratory virus that turned into a small case of fluid in her lungs, not pneumonia though. Yay for a happy and healthy New Years Eve the next day .... we brought it in sleeping. :)

**Her already sketchy immune system is due to her having the food allergies. Basically, an allergy is caused by the immune system over-reacting to a normally safe protein. You see, when Liv encounters one of her allergens and has so many symptoms, those are all caused because her immune system sees that allergen as "the enemy". The immune system starts going insane and attacking itself in an effort to rid the body of "the enemy."***

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**

The Ending of a LONG Chapter in Our Journey!

Surgery part THREE (this was a really long time in our lives, yikes!)


So, I think we shall call Surgery day (Dec. 16th 08) day one and go from there.

Day one: Pretty much summed up in the past two postings.

Day two: 12/17/08
This is the day that should be easy breezy and we are to be discharged from the hospital...so LONG as everything goes as planned. In my world, nothing really EVER goes as it should, ha!

That night (from day one to day two) was a long night of no sleep since every 3 hours Liv needed her meds, of course she had trouble going back to sleep, after EACH dose. By sun-rise we're wide awake and Liv's nurse comes to un-hook her IV. They leave the IV in her arm, but stop the drip...just in case. Good thinking.

Breakfast consisted of mashed bananas, applesauce, water and milk. I'm determined that this is going to be a good day. Liv had other plans however, and chose not to eat/drink anything. Nothing. We all let this slide as we figure she is just nervous, and honestly...who could blame her?

Lunch rolls around and yet again...nothing. When I say she refused all food; I mean she sat there, glared from the food to me, crossed her arms and yelled, "NO!" Well, alright....seeing as she isn't taking any foods yet, the doc comes in to give me the good news, we'll be discharged the next day...IF Liv comes around. Deep breaths, this WILL be okay.



Dinner-time. Yep, you guessed it. Still.Not. Eating. UGH! In order to keep her hydrated, Liv gets another type of meal; the IV drip. Finally she goes potty for only the second time that day.


Day Three, 12/18/2008

Another night of no sleep, for the same reasons as the previous night.

Sun rises and just like the day before, Liv is un-hooked from her IV. She goes potty for the first and last time of the day. Yep, just like the day before...nothing, no food and no drink. Ah, this girl has the ability to make me crazy with how stubborn she is!

Three more days pass just the same as these first couple. Nothing but IV fluids and the occasional drink of ice water. Fun.

Day six 12/22/08

We have both HAD it. We. Are. Going. Nuts.
I'm not entirely sure how we've survived this long with any sanity in tact, honestly. We traveled the hospital in the red wagons they have, toured the main floor during the holiday events, went to volunteer gifting events, went from playrooms to playrooms on all different floors, we did crafts, had a LOT of special visitors and we sat around...waiting for Liv to decide to eat. Being in the hospital during the holidays was really a mixed blessing, there were tons of visitors and charity events going on. Honestly, it was one of the most humbling experiences in my life and lead me to volunteer as much as I do today.

Then it happened, that evening the Dr came in to visit us, still in awe of just how stubborn Liv really is. I plead with her to let us go home, I tell her I just KNOW Liv will eat at home where she is comfortable. Doc agrees, under one condition...Liv MUST eat/drink TWO slushies before bed time AND potty. Oh, this is GAME time and I put on my best game face. The nurses and I conspired to make a pretty tasty slushy consisting of crushed popsicles and Sprite. Okay, so they make these all the time for kids, but we all sat around drinking these in front of Liv. yes, two nurses, the Dr and myself sat in Liv's room talking, laughing and going on and on about just how YUMMY these slushy treats were. This seemed to get Liv's attention and she wanted to TRY some of mine. In my mind I was ELATED, but I had to play a little game and tell her, "no way!" I am not sharing this...it's too yummy to be shared! She pouts and looks at me like she cannot believe after all this, I won't share with her. The nurse offers to go make one for Liv, if she REALLY wants one, but she has to drink all of it. Guess what? Game WORKED, Liv finished it AND asked for another! This worked and she went potty!

Day Seven (holy smokes am I tired by this point!) 12/23/08

Doc visits us and Liv is happy as can be, drinking yet ANOTHER slushy. I'm silently wondering how in the world I'm going to get her away from this latest addiction, but I don't even care at this point! We get all her scripts for antibiotics, pain meds and all her Dr.'s orders. The nurses call up a team (a TEAM) of volunteers to bring up red wagons so I can load up all of our stuff and all the gifts that were dropped off by all the holiday well wishers that visited during our stay. This is it.....We are going HOME!






These particular visitors happen to be Cops Fighting Cancer . Funny thing, a couple years later I came to know the founder of this organization and he happens to be one of the greatest people I know! They are a fantastic organization to check out and also help support! :)

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!!

Fun or Maybe Not-So-Fun Facts

I need to finish the "surgery" post, and I will....pinky swear. Today, I'm trying something a bit different from my prior posts....How about getting to know Liv, Tai and myself some? I'm going to post today (and hopefully each Friday) 10 facts about us each.

Here goes!

Tai:

1) Tai is 11 years old and he is taller than me (yikes!).
2) Tai's favorite color is green.
3) He is PAINFULLY shy and hides like you wouldn't believe when my camera comes out (which is a lot).
4) Has wrestled for the better part of the last 5 years.
5) Loves playing golf
6) Loves soccer
7) Loves swimming and is joining a team this year, but his true water sport of choice is diving (noticing a trend here....sports. Are. Life.)
8) Is a good shot with his bow and arrow
9) Is an even better shot with a gun (at the range....I feel like I MUST add a disclaimer to that one)
10) Tai is a super duper cool Left handed dude.

Liv's 10
1) Olivia wants to be Taylor Swift when she grows up
2) She also wants to be a fire-woman and a cowgirl (I don't have the heart to break it to her that the horse allergy is going to kill that dream :( )
3) Liv has this amazing way of memorizing movie quotes....it's crazy and funny at the same time
4) As well as she remembers movie lines, she remembers song lyrics even better
5) Okay, truth be told...Liv has my memory and rarely forgets anything....it's annoying and now I know how others feel with me around....
6) She will sit through entire football, basketball and soccer games with no complaints.
7) Liv is quite the um..."fact finder" (translation; she is NOSY!! :P)
8) Just about a year ago, she chopped off almost 9" of hair (thank goodness her hair grows fast!).
9) She is SUCH the loving little snuggle bug. She always wants affection (I love that).
10) Liv is a firm believer in doing all things for herself...by herself.

My 10

1) I'm shorter than my 11 year old son :O ha!
2) I will do anything at all for my children
3)It's true...Liv has inherited my memory.
4)The only thing I love about the fall is Football and I. Love. Football.
5) I can tell you that Liv was born on a Tuesday morning because I went into labor during a Monday Night Football game...Broncos vs KC and we lived in KS at the time. Yes, football is that serious.
6) I was a teen mother and had Tai just two weeks after I turned 18 (talk about a journey with him)
7) I do NOT love seafood. Not. At. All.
8) I love thunder storms
9) Hate the smell of rain.
10) I get along best with those that have mastered the art of sarcasm.

That's really all I have for tonight, I just thought that with all that I've posted....y'all don't really even "know" us. Thought I should go ahead and fix that ;).

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!

December 2008

Anybody want to take a trip with me....to December 2008? Well, that's where we're going!

Picture this, it was a COLD Denver winter (if you don't know, I'm a huge Golden Girls fan and just had to use Sophia's line). When I say cold, I mean putting most past winters to shame, we're talking temps of -30+ with the windchill factor. That will be semi important later and I thought this would be a good enough place to document it.

December 08 rolled into our lives much quicker than I was ready for. E-mails between Liv's father and myself were exchanged as he knows my anxiety levels on any given day are pretty high, but given the impending surgery...yeah, I was a bit on the high strung side. Every single fear you can imagine ran through my mind: Will she be allergic to the anesthesia, will she be allergic to the pain meds, will she have any complications during the surgery, how am I going to get her eating after and well, you get the idea. My mind was a racing MESS, yours would be too, I'm sure of it (yes, that thought makes me feel a tad better).

December 15...the eve of her surgery. I am so busy packing our bags for the hospital and freaking out trying to think of what we'll need. It's only going to be overnight (um...well was SUPPOSED to be), but I'm thinking she needs her own jammie's, I need my pajamas, computer, camera (never expect me to show up anywhere with THAT)...I need Liv's orders for the surgery, paperwork that I already filled out, insurance card, blankets and teddy bears sent by friends and family PLUS stuff for her to do! Liv is a *ahem* spirited child and keeping her busy on any normal day is anything but easy...lock her in a hospital room for a few hours is torture on her, much less overnight! As expected, I went to bed late. Very. Late.

December 16 4am my alarm clock goes off and I've slept all of two hours (UGH!). I check the weather site to get the temperature outside...."feels like -36"....SUPER. It's a pretty sober and slow going morning at this point. I finish the fine details on our bags, load up the car and start it...it hurts to breathe outside at this point, I mean we're talking sharp pains here and I wonder if it's anxiety or the cold. It was definitely the cold. 5am rolls around and my mom calls me from the parking lot as she is going with us because I just couldn't do it alone. I love my momma. I wake Liv, put on her heaviest coat, wrap her in her thickest blanket and carry her to the car. We begin the hour long drive to the hospital, check in is at 6am for a 9am surgery, fun. Check in runs smoothly and Liv is in good spirits. We're moved up to pre-op. Pre-op just sounds kind of scary, don't you think?

Time in pre-op has flown! Olivia's Pre-School director even stopped by to visit, how cool! We miss her (you'll see in future postings how the school situation is less than awesome for us right now). Finally, it's close to that time and a woman comes into our room, I forget her exact title, DOH! She shows us and mainly shows Liv what to expect in the operating room. She shows her the Styrofoam pillow thingy and face mask. Liv is totally cool with all of this and then she got to pick her flavor for her anesthesia (really they just rub skittles chap-stick inside the mask)! Liv picked cherry.

9am on the dot and it's go time. A nurse comes into our room and hands us scrub type things to wear. I'm shaking and can't zip mine, great! The nurse comes over, puts her hand on my shoulder and assures me, Liv's Dr is the best of the best around and it will be over in no time. I let a single tear slide and that was it. We were ready. The nurse let me carry Liv and my mom followed into the operating room. At this point, it was time and I was pretty nervous about seeing her fall asleep. The Dr came in and greeted us (seriously, she was the coolest ever!) and told Liv all that was going to happen. Liv laid right down and asked to keep her surgery bear with her...they LET HER!

This is the moment....they take her from my arms and lay her on the table, they check her stats and then the mask...oh that mask. She smiled at me and I'll never for get that...as the mask was put on her face she told me, "I love you mommy" and she signed it (that's kind of our "thing", we sign I love you and blow a kiss with that hand). Liv's little eye lids closed and she was asleep. It was probably the eeriest thing I've ever watched. My mom cried, I didn't...remember, I let my one tear slide.


**There is a LOT to tell about this moment in our past so I think this post is going to be broken up into a couple, maybe a few separate postings**

***The image in this post is my girl hanging out in Pre-op.***

Until later friends!

Phew....and a present day posting.

Well, it's approx 9:45pm here where I am and we've (thus far) made it! No antihistamines for FIVE whole days! This is an absolute joyous success for us. Tomorrow at about 10:30am we should be embarking on Liv's first skin testing *biting my nails*. Initially this was to test wheat, soy and maybe (MAYBE) peanuts. I have however asked to have her Dr check in with us (he will be in the office, but not present for the testing) and see if maybe we can test for more than just these few things. I feel like we've come so far and it hasn't been easy at all, why not take this opportunity and run with it? This is the most accurate way to test so why not toss a few more in...just to see where she really stands in this fight.

My present day postings are awful boring aren't they? I'm going to share a little secret with you all..I love (adore even) boring. It means all in the world is calm and going as it should.

If anybody is out there reading this tonight, or in the morning could you do us a favor? Say a prayer for us, think good thoughts, send positive vibes, or really whatever it is that you believe in? They will be received with much appreciation, that I can promise you. *cross my heart, even*