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

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

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

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

Liv with one of her Preschool teachers.

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

Graduating from Kindergarten!!

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

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

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

Halloween in 2nd grade!

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

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

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

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

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

The Bad, The Good & The Thought Vomit? Ew...

Just a late night rant/vent/thought vomit (you're welcome for the visual).

I wonder how many other parents of chronically ill children find themselves with a very limited number of friends; if any at all (Specifically those working with hidden disabilities; FA parents, Eczema parents, Asthma parents, Autism Parents, so on and so forth).  I mean, it's hard to have a social or work life when more often that not, you need to cancel plans with little to no notice. Making play dates with an FA child is one of those things that I'm always torn about; do I ask the other parent(s) to accommodate my child regardless of how difficult that may be for them or do I beg them to make a 'food-centric' time well...sans food? Going back to canceled plans, how do you tell a friend, co-worker, boss, teacher, family member or really anybody that you have to cancel plans because your child is having an eczema flare? Come on, I'm part of the real world and I try to keep things real - who would believe that eczema could interrupt every aspect of life (outside of other eczema parents, of course)?! How numb can a person become to the look that a person gives you saying, "uh, yeah, eczema...sure," or the tone and change of voice you hear when they say, "Oh, poor child...," but it really sounds more like, "Hrmm...canceling again, suuuper."

I wonder how many parents of chronically ill children have to stay home with them out of necessity or work places not being able to accommodate the needs of an employee's chronically ill child. If you've been reading my blog through the years - you know I've been given the choice of being with my hospitalized child or losing my job...sadly, more than once. I wonder how many other parents like me, find themselves wondering if they're letting all other responsibilities down...such as school, siblings, work, etc...

On the positive side - my social life may be less than amazing, but the friendships I've made, via different online forums for other parents in similar situations to myself,  are too many to count. The friendships that I've formed on a certain "mommy board" when Liv was an infant have thrived through the years, with some of the most compassionate and caring women I could ever imagine touching my life. My son is a clear example of some of the things I'm (hopefully) getting right; he's this intelligent, kind, considerate, confident and selfless young man. My son will (usually) willingly sit down and just chat me up about a book, a class assignment, a Scout accomplishment/activity, future intentions and as far as I can tell, is fairly open with me - that's something I treasure so much.

If I haven't tooted my own horn enough in the previous paragraph, I'd like to think I've touched the lives of others myself. I'd like to think that through our trials, others have learned. I can be rough around the edges, sarcastic, stubborn, stretched thin (too bad this is figurative and not literal, d'oh) but at the end of the day - I regret nothing about where I am in life. I wouldn't trade the blessings I've received through the struggles for one single moment - if everything else sometimes feels like it's falling apart, but I have my faith and my little family; I am and have enough.  I began this "thought vomit" (yeah, that's gonna be a "thing" for me now, ha) feeling frustrated and thinking somehow I was failing at far too much, but this has really been the perspective I needed. Mission accomplished.

Atopic Derma-what?!

Atopic dermatitis is another term for Eczema. Atopic dermatitis is the more common way eczema is referred to at National Jewish Health.  Both 'dermatitis' and 'eczema' mean inflammation of the skin while 'atopic' is another way of referring to allergic conditions like asthma.

Atopic diseases such as asthma and atopic dermatitis are most likely genetic. Yep, if you have eczema you will most likely pass that down the line - Asthma too.

Liv (the *lucky* little ducky) has what is known as the "atopic march". This means that certain diseases develop over time, one after another - eczema (AD), allergies (mostly food in her case) and then asthma. The "march" doesn't always go in that order, but does start with eczema. Once eczema is on board the others are more likely to develop than in a child that does not have eczema. That *may* have been helpful to know years ago, but hey, Dr.'s that we've run across treat eczema like it's no big thing - regardless of how raw, red, irritated and inflamed a little one's skin may be. Sad. From about 3 months of age, Liv has struggled with this irritating and sometimes debilitating disease. I pressed and pressed Dr.'s for help for so many months to no avail. Thank goodness we came back to Colorado and started treatment at National Jewish.

What can irritate atopic dermatitis skin? During a flare up, anything and everything - flaring atopic dermatitis patients are walking open wounds - what doesn't irritate an open wound? There is an "itch/scratch" cycle that also happens during a flare up - this makes the AD kiddo absolutely mad and miserable (along with this mommy).

Some things that can irritate even calm AD skin (in Liv's case, at least):

• Emotions - from extreme levels of laughter to sadness/crying to anxiety.
• A hot and humid climate (causes sweat which is really hard on skin)
• A dry climate- pulls moisture from skin (though our dry climate is ideal for Liv's asthma)
• Dust mites - these little critters (cannot see with the naked eye) thrive on dead skin - they are found anywhere in the U.S outside of the Rocky Mountain region.
• Allergies
• Cold/flu

What can help make the AD patients' skin better (Liv's anyway)? Getting all diagnoses diagnosed and under control!! That was huge in our battle! Did you know that something as simple as nasal washes help AD?! There is so much bacteria breeding in our warm, dark and moist noses (you're welcome for the visual!) - specifically Staph (which Liv has had several times now). It's entirely too easy for kids (anybody really) to scratch/rub/pick their little bacteria breeding noses then scratch/touch those open wounds they call skin. Get that nose under control and watch their skin clear up before your eyes (okay, with the help of a few other steps)!!

Steps that were critical in creating a healthy skin barrier for the Livster:

• The right topical steroid ointments for the right flare up areas.
• Vanicream, Vanicream, Vanicream (oh, and did I mention LOADS of Vanicream?)!
• Plastic spoons (yeppers, for the above mentioned Vanicream/ointments). You never want to stick your hands in lotion/cream/topical steroids as this contaminates them - this will just put bacteria right back on the ad patients' skin - never really bringing relief to them.
• Learning what a Soak & Seal is and how to do this.
• Wet Wrap Therapy - There is no better way to get water back into the skin, than to soak it in water and keep that moisture coming with the wet wraps!
• Learning when and how to step down on any of the above routines and therapies.

So, I'm kind of over this "text book" post, but I felt it necessary. If you have any questions on how to find resolution or how to deal with any of the above listed irritants - please, contact me - I probably won't have the answer and am not a Dr., but I can find helpful links or suggestions for you.  Need help in the list of latter list (creating a healthy skin barrier), contact me. Again - not a Dr, but this isn't my first rodeo either. I'll hand out the suggestions and the links just the same. I do ask that you approach your Dr for the go ahead on any medical treatment - thanks.


Don't believe me that the costs and the treatments are worth it?

Sometimes You Just Need to Break and Put it All Back Together

I wish that I could say today was a great day, but it wasn't. It wasn't a horrible day, by any stretch either.

It was an early appointment at the allergist with Liv. Our day started at 5:00 am this morning - yuck! Neither Liv or myself were fully prepared for what that time of day feels like. We made the best of the hour drive and tossed in a Junie B Jones book on CD for our rush hour journey.

Nothing exceptional happened at the appointment, Liv saw one of the Dr's that she's seen in the past as well as her own allergist. Liv has had Staph infection in the past, due to her Eczema flaring up, and they were worried that we were going in that direction now. Lots of antibiotics (and I do mean a LOT), more wet wraps prescribed, good chats with the Dr's and nurse and we were on our way.


Oh, antibiotics.....

This past month has just been a tough one in general - it always is tough this time of year, but I'm never quite prepared for how it feels. If you've never had a "sick" child, beyond their health, you are just amazingly blessed. To have to tell person after person that the Dr has no answers as to WHY this is happening is hard. To be questioned by those around you and close to the situation, repeatedly just sucks (for lack of a better term). To have people tell you what "could" be going on, or comparing to what they know or have heard - frustrating (I know these are all said with good intentions). I mean, my Liv goes to the best hospital in the *nation* for respiratory illness and they are top notch for their advancements with allergies and Eczema as well (no really, we've had Dr's from around the *world* sit in on appts because they are learning from the Dr's we see). Now, because of who Liv's Dr's are, people expect them to have all the answers, well answers or "fixes" can't necessarily predict when something is going to go awry. Unfortunately, with my baby girl's health, there is a delicate balance and when one "ball" drops - everything else is just set off course. Her health tends to go off course from December to April of every year. Every year I sit, defeated until I just let it all out and move on. Today, thank goodness, two great friends didn't let me just sweep everything under the carpet - and I vented (*boy* did I vent). Tomorrow is a new day and tomorrow we carry on with this path that we've been put on.

I may sound incredibly down, I'm not, I'm tired. With that, I think it's time to call it a night and turn in - until next time, friends.

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

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


What? This is me taking life seriously, ha!

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

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

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

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

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

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

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

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

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

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

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

1.5 Years? That is a Lifetime in the Blog World, I know!

It's 7:00 AM and I'm looking at Liv's meds all lined up nice and neat on the counter. Each med is in it's correct dose and just waiting for her to finish her breakfast. If you don't already know this by now, living in an allergic world means living in a super controlled and organized world (neither are traits that I have a handle on...at all). Living in an allergic world means upping Liv's Probiotic intake during times of high med days. It means learning what Probiotics *are* and what they *do* in the first place. There's plenty more of these fun little nuances, but I'll get to those...and I mean it this time - I actually will!

Now, that was a small blurb and I know what some of you are thinking, where the heck do you get off starting up again like you never left us?! I know! A year and a half is a lifetime in the blog world, I get it. So much has gone on and so many things have happened that I need to share. Liv's trials have, unfortunately, not ended and we are still striving to make each and every day a good and uneventful one! Most of you keep up with me personally on Facebook and thank goodness for that! You know the big stories, but I probably haven't given too much of a look inside and I'll take care of that here. I did plan on making this blog about living with the challenges that we do, as a single parent, but truth be told...single, married or heck - village, this life is hard and not much makes it easier. So, here you have me again, just sharing, spilling and rambling on again.


The most recent picture of the kids together.

There aren't a lot of loose ends to tie together on the most recent (yeah, a freaking year and a half ago, recent...ha) post, so I won't bother with the small details. I will say the only part that is really missing, is the part about one of Liv's nurses completely that Liv was having a rebound reaction up on the patient floor. The lesson learned is to BE YOUR CHILD'S BEST ADVOCATE - you are all they have fighting for them at times and they need you to buck up and SPEAK UP sometimes - even when you're unsure of yourself and what you're doing.

I'm going to be organizing some thoughts this evening and will get some posts put together to add here and get things caught up. Thanks for bearing with me, all!

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.

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.

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

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

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

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

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

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

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

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

OUR version of "normal"....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sometimes We Fight More Than Just Food....

Present day posting**

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

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

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

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

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

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

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



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


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

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

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

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

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

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

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



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




Our love to all!

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!

That Wacky Mother's Intuition Strikes Again

Who knew re-visiting the past could break you, emotionally? Just for a bit, but yeesh!

So...we were in the fall of 2007 when I last wrote (about the past anyway).

The remainder of 2007 was pretty uneventful. Well, uneventful by MY terms and the terms of a lot of other FA families. By uneventful, I mean ER trips were about once maybe twice a month and nothing extraordinary, just typical hives, breathing issues (not serious ones though) and colds attacking Liv's respiratory system. The first half of 2008 was similar to the last half of 2007. Usual ER trips, missed work, lost job due to missing work for Liv (No matter, I didn't want that job anyway *sticks out tongue* and quickly found another *THANKFULLY* :) ). Something stood out though during all this "normalcy", I kept hearing the doctors remark about her tonsils. At first, I thought nothing of this, but after about the billionth time hearing it (that's a lie, it was more like the 6th time), I couldn't shake it from my brain.

Late summer 2008, I took Liv to see the pediatrician. Once again, in hopes of getting that "ever elusive referral, but this time to an ENT. After all the comments about Liv's tonsils and looking at them myself (hello HUGE!), I decided an expert needed to see these suckers. Once again (gosh, I wish this wasn't such a repetitive scenario), I was told I was wrong. The pediatrician took a look and said they were large, yes, but nothing should really be done about them. He told me that while Tonsils were at one time removed at the drop of the hat, they really try to avoid that now. I was also advised that unless her tonsils were touching, they wouldn't see them as a threat to Liv's health. I was not about to go through this nonsense yet again. Remember the whole "do NOT underestimate a mother's intuition?" Yeah, file this situation under THAT. I'm pretty sure I sighed...loudly; I do this right before a confrontation that is going to be uncomfortable for me. At this point I recall standing up and saying, "my child has DEADLY food allergies...allergies that cause her to swell and stop BREATHING, you're going to tell me that her enlarged tonsils don't even remotely concern you?!" What I got in return to this out of character behavior (for me), was a hesitant smirk then...,"Alright. I will write the referral, but when they say nothing is wrong...be sure to come and see me." Uh, seriously?! Did he JUST say that to me? He is giving in and writing it?! Who cares about his sarcasm, he gave us the referral after round ONE! NICE! I called and put Liv on the 3 month waiting list and made the appointment with an ENT at The Children's Hospital here in Denver.

Fall 2008...It's GO TIME, or....ENT time! We sat in the waiting room for what seemed like an eternity. Really, we waited for an overbearingly long time. Once we were seen though, it all happened so quickly. We did the usual weight, height and temp check, went through her list of medicines. The nurse responded to her medicine list like they all do, "Really? That many medicines for one tiny little girl?" Yep, that many...it's true. Anyway, eventually we're greeted by a warm and super friendly Dr. I could have hugged her she was so people friendly. She asked a set of questions: Does Olivia snore? Yes. Does Olivia wake in the middle of the night and if so....is it often? Yes...and it is every night. Does she need long naps still? Yes. Does she perspire in her sleep? She wakes up soaking wet in sweat. Q&A ends and the Dr takes a quick look inside Liv's little mouth. She quickly pulls away and says, "We rank tonsils on a scale of 1-4, 1 being barely there and 4 being touching. Olivia is a 3 almost a 4. In my opinion, they need to go, even if she didn't have food allergies I would say this." Now, let me preface this next sentence by saying, I do not love seeking out illnesses for my child. Okay, VALIDATION, don't underestimate what a mother knows about her child. Nobody knows your child and their health/symptoms like their momma.

I think this is a good point to sum this post up. Liv's father and myself quickly discussed whether or not to do the surgery. I say quickly because well...it was a no brainer. Surgery set for Dec of 2008 and that is where I shall resume in this catch up process.

PS, for those wondering, I DID in fact go and visit the referral giving Dr as agreed upon ;).

Lifes little nightmares

By the fall of 2007 the divorce was final and the kids and myself had moved back to good old Colorado.

One fall day that started off like any other normal day....IT happened, the reaction that nightmares are made of. We were visiting my parents house and my almost 2 year old Liv opened the fridge. She looked up and saw the eggs at the top of the door, wondering what they were she kept pointing to them...I looked over and panicked . As I ran over and grabbed her, she shook the door til an egg fell to the ground. I'm pretty sure that my heart stopped at this point. The egg didn't break and Liv was in the clear...phew! Nope, probably shouldn't underestimate the temper of a toddler, I was just about to pick her up from where she stood when she did it....she STOMPED her bare little foot on the egg. I'm pretty sure my heart ACTUALLY stopped at this point. What came next is something I would not believe had I not seen it with my very own eyes. Within seconds she had hives on her foot and quickly working their way up her legs/back. I screamed for my mom to come help me clean her up (in hopes this would help). As my mom tossed her in the sink I gave Liv her Benadryl. The washing nor the Benadryl did any good. I strapped Liv into her car seat and high tailed it to the ER that was closest. It took about four minutes to get her there during which time I did my best to keep her talking to me. As I turned into the parking lot, she stopped responding....I looked in my mirror and caught the panic in her eyes. I parked my car right there (in the entryway of the er...on the sidewalk), grabbed my baby and RAN like her life depended on it....it did depend on it.

There was no wait in the waiting room...I suppose when a mom comes running in holding a child that is not breathing, you bypass the line. She was taken from my arms by one of the nurses that came running to meet me. At this point, Liv was in full blown anayphylaxis...if you've never witnessed this, it's unlike anything you'll ever see. The Dr checked her O2 sats which of course were not good, he checked her breathing which was also, not good. At this point a second nurse was running in our direction with an Epinephrine injection. Liv was given the shot which caused a whole new set of problems. While Liv started breathing, she also started screaming at the top of her lungs. She began vomiting (either from being so worked up, or the reaction)...violently. There I was standing next to my baby and could do nothing for her, but try with all my might to stay calm and get her calmed. Like I said, this is what nightmares are made up of. Eventually, she did stop vomiting and she did calm down. She lay limp and vomit covered in my arms. I'm honestly not sure I even minded at that point. It took me a few minutes to realize I wasn't alone in the room with her, there was a nurse with me. Up to this point, none of the staff had even spoken to me (other than to find out the basics of what happened). She rubbed my shoulder, handed me a cup of ice water and said, "good job, mom." Nothing too profound, nothing emotional, just the "good job, mom", and I cried. This nurse brought a hospital gown for Liv and myself. She explained that she'd never seen anything like this in her life. I found no comfort in that, but I loved that nurse. I loved her for not speaking to me and only concerning herself with Liv when it mattered. I loved her for trying to comfort me in the end. I loved her for her part in saving my child's life.

Liv wasn't admitted into the hospital, she was discharged from the ER several hours later with a steroid prescription and an Epi Pen. She still had hives for a few days, but that's to be expected and pretty normal.

I could go on about this incident, but I'm emotionally drained from re-visiting this moment in time.

Oh, her name is Gina...the nurse. We went back the next week to return the hospital gowns we were allowed to leave wearing, and we left a thank you card with a gift card to Chili's for all the staff that helped Liv that day. Gina got her own card, because she truly cared...for both of us.

The Unknown and Uneventful

I believe that I last left off with throwing foods across my kitchen...

It was at this point in time that I began to regroup and head into the unknown. Yes, I knew what I had to avoid and thought I knew how. I had NO earthly idea just how HARD this task was going to be. I mean when you think about it...a one year old that can't have cheerios, any cereal other than rice and corn chex were out, any fast food (because at the time there was really no such a thing as places posting allergy info...that is still hard to come by), pasta, mac & cheese, Gerber snacks and meals....the list goes on...I mean really...WHAT do you feed a one year old that is so restricted? A lot of home cooking is what you will feed them! I began making Sunday a cooking day. I'd cook chicken and rice with veggies, chicken, cheese and again..rice. I'd feed her lots of meats, cheeses, fruits and veggies...I made this all in bulk and would freeze small containers of her meals to make life easier on me. You know those days when you just pop a frozen meal in the microwave? I made our own...I felt so...so INVENTIVE, ha! In reality, I think I just felt like I was gaining control on this disease. I was going to live with it as if it were second nature or a second skin.

I was blessed to have such great friends around in a time that I had no family around. They got to know Liv's allergies as if she were their own. In a life where spontaneous barbecues were a way of life; they were amazing. They would stop making foods like Deviled Eggs or anything else that would cause severe danger for Liv, they would explain to others about her allergies and to please refrain from bringing certain foods. I couldn't have been luckier in what could have been a sad/lonely situation.

And so passes a pretty uneventful year. No further signs of reactions, the eczema was still just as bad as ever, but that was "normal", sadly.

Next blog will begin in the Fall of 2007......

Doing more, so much more...

Okay, so I'm working on keeping up my blogging promises and so here I am...doing my "present-day posting" for your reading and viewing pleasure.

At this point in our lives I'm ready for so much more. I feel as though I've been to battle with these crazy FA's and am over fighting them. I am on to accepting them for all that they are. That COULD be because we're rounding the corner to Liv's 5th Birthday and there is little hope for outgrowing some of these FA's. I've spent so much time anticipating her 5th birthday being this huge turning point and like magic, she would be without food allergies and with FOOD. Okay, that's kind of stretching the truth...for about the last year I'd lost hope of age five being magic. That doesn't mean that her turning five isn't a pivotal time in our life. We are looking at hopefully eliminating wheat & soy from her not safe list. As a matter of fact, if all goes well...by this time next week Liv will have had her first ever SKIN testing done for wheat, soy and maybe (HUUUGE maybe here) peanut! If we can add wheat and soy back into her diet....or heck, even just SOY (if you've never read food labels...Soy. Is. In. EVERYTHING...ok...almost everything.), life sure would be a lot easier.

What do I mean by "if all goes well"? Well, Liv takes antihistamines every single day (along with a plethora of other daily meds). She's been on them 3 times a day for as long as I can recall, we've gotten her down to once a day and tomorrow will be her last day of taking any until next Weds. IF she should for some reason break out, or need an antihistamine before next Wednesday...the test is off. I would then have to work on keeping her off of the antihistamines for another 5 consecutive days and let the testing commence...whenever we get to that.

At the point of testing we will have immediate results and numbers, but this won't mean that we can just jump in and add these foods into her diet. After doing the testing and (hopefully) getting negative reactions, we move on to the food challenges. These will take place at the Main campus for National Jewish (if you don't know who they are, they are angels on Earth to some of us...check them out, they really are amazing!). The food challenges are lengthy and sound pretty boring at best. At least, I HOPE Liv's are boring...boring means nothing exciting happens...other than new foods being added to her diet, of course.

So much for organized writing skills, I wanted to convey how I am ready for more. I've found myself becoming quite the advocate for kids with food allergies. I've had to break down several personal barriers to learn to speak up for Liv and fear that not all parents will be able to jump those personal hurdles themselves. I find that I'm more and more involved in so many food allergy awareness organizations, discussions and support groups; all of this makes me happy. It makes the past almost four years worth all the while. The reason for this blog even happening is to share, share and share some more. I have hope that other parents will find solace in knowing we're not alone in this fight. I do promise to be as forthcoming as possible, through the good times, the bad times an the really REALLY bad times. Please hold me to that and ask anything you like.

I leave you with this and I now embark on the newest journey in my life...SEWING, yay!

Shameless fundraising moment

I will get to a "present day" posting later this evening..I hope. You see, I just got a new sewing machine and am beside myself with excitement to play with it right now!

This blog is shamelessly to provide y'all (yes, I say y'all...a lot) with the link to our Food Allergy Awareness Walk! We walk in August of every year and cannot wait for this one! It should be the best one yet...activity wise anyway.

Walking For Liv and SO many others! Please take a moment to head on over to our walk page and read away, donate if you're moved and able to do so....if you're unable, we understand and still love y'all (see....there is again...I won't even apologize for it either)!