Today has been all about taking care of me, which rarely happens around here. I usually put my own health off until I'm so sick that I can't move. I suppose you could say that's acceptable considering I have two kids to chase after and keep organized, buuuut, it's really not acceptable.
So, after a long weekend of taking Liv to the Dr and then to the hospital's triage for a persistent Asthma issue, today was my turn. I know this is my blog about living with food allergies and our struggles, but really, this is a HUGE struggle for me. I never know when to say "enough" and make my own health a priority...that's about to change. I've made a commitment, not just to myself, but also to my children that I will be sure to be in the best health possible - in order to give them the best version of me that I can.
My journey started today, with a full on physical (I know you're jealous!) and well, it's going to be a bumpy ride as I have some serious changes to make - my sleep and eating habits are the first on the chopping block (ugh!!). I'd love to know how many other mom's like me (to sick kiddos and healthy alike), just don't put the effort into ourselves as we should be. I wonder how many mother's (again, to sick or healthy kiddos) like me, have found they've developed a serious case of anxiety.
Guess it's time to cut back a bit on this.....
And time to eat a bit more like this!
My anxiety levels are hit or miss, from the everyday worries of all the random things that "COULD" happen, all the way to the all out panic attack. If you've ever had a panic attack, you know what kind of stress that brings on. Yes, I've been in ER's a few times *swearing* to all that is good, that I'm having a heart attack. My heart is racing, my skin is clammy, pressure in my chest, hard to breathe, almost blacking out and just clawing to get outside to fresh air. It is the craziest thing I can ever imagine going through...I guess, literally (ha!). As soon as the Dr's get you calmed enough to tell you that your vitals are perfect, you're oxygen is just fine...if you're me, you laugh and just feel plain stupid.
In reality this isn't stupid at all, and it's very real for some of us. Today, it was real enough that my Dr did put me on daily medication for this. I begged her not to, but she really wants to try the lowest dose and see how I feel in a month. If I don't like it, she'll never bug me again...okay, that was a fair enough deal and now...I guess I'm officially one of the millions of people on this stuff. I'm bothered by this, and yet, I'm excited. I feel like I might have a "mental freedom" coming my way. I know that I'll never be worry free, especially when it comes to my children, but wow...to find myself again - just an amazing opportunity! I guess we'll all have to stay tuned for a month or so to see the outcome of this new journey!
**Yes, sometimes I probably share too much about myself, but in the spirit of being transparent about our life (struggles, blessings, day to day and all), I've promised I'd share it all....**
If you know me on a personal level, you know that I'm often inappropriate, but probably rarely to a stranger. I have no care in the world for being "PC" because I have common sense and believe that means I should have common courtesy. I believe that when one practices common courtesy they should not run into a situation that isn't exactly "PC". I could be way off here and quite a bit more inappropriate than I give myself credit for - who knows.
What? This is me taking life seriously, ha!
What I do know is that there are several things that are said to me (yep, repeatedly enough that I have a collection of them), that I am just over. Here is my smallish (maybe? It's growing by the day you know) list of things that continue to spike my blood pressure for a small moment in time.
"Oh, the *poor* girl/*you* poor child." (do NOT say this to my child directly, ever...unless you prefer that I shred your words and hand them back to you...).
(Start with sad looking face) "Wow, Billie - she looks just awful." Wow, okay...thank you - I think? I don't know if it's validation folks want to give or what...but they should keep that, seriously.
"So, what do you *feed* her exactly? I mean, can she even eat anything?" Well, as most children do, she *does* in fact eat and a ton at that.
"The girl should probably be in a bubble." You know what...screw you (forgive me, I'm vulgar at times and that was mild).
"I just don't know how you do it, you're supermom." This doesn't bother me, so much as baffles me. I never know just how to reply to it. My lack of general sense of emotion with others might be my own issue here though. I just feel I do what any mother or parent would do in my situation...face it head on and go with it. Right?
"Miss, the 'sick waiting room' is over there...." Yep, this was just last week as a matter of fact, mid reaction. If only my filter on my mouth didn't work so well. I talk a big game, but at the end of the day, I just quietly mess with people...I just smiled at her and continued to sit where we were, she got uncomfortable, apparently and moved. Meh, whatever.
"Oh she'll grow out of it, I had a cousin with a [insert any random allergy here] and she/he got rid of it." What? Are you kidding me with this? What could I possibly do with this? This does not give one hope, it makes us feel that You. So. Do. Not. Get. It. You should just move on and go about your business at this point. In all honesty, don't you think we know this is possible and probably know the possibility of our own child outgrowing their allergies? Most of us are not in this blindly (I would HOPE).
Now, back to me not worrying about being "PC"...if I know you and you've said any of these things to me, I've probably corrected/steered the conversation. Chances are, I'm not offended either, honestly. It's the stranger aspect that kills me. I have never understood the random stranger offering unsolicited and *uneducated* advice and/or sympathy.
Well, I'm tired and have a Dr appt to get Liv to tomorrow. Oh, you didn't think that because it's a weekend that we get breaks from these things, did ya?
Goodnight and as always, thanks for letting me rant/vent/ramble or whatever else this can be classified as doing.
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!
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.
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.*
Okay, these past couple weeks have proven to be extremely busy for my family. First off, I'd like to announce that I was chosen to be an Enjoyable for Enjoy Life foods! What does this mean? It means that I am a brand ambassador for them here locally. It means that I am able to attend events as an ambassador and share the Enjoy Life experience with so many people. This is a volunteer position, but I believe it pays more than I could ever imagine.
With that, I will roll on with the next announcement, yesterday was our FAAN walk for Food Allergy awareness. The walk was what I would consider a success. There were over 1000 people there. This is small for most "cause" walks, but this was a big crowd for us. While food allergy sufferers are rare, the number is growing, at a scary rate. Of course, that rising number is why we walk.
I had every intention of attending this walk with my children as a walker, but fate had other plans for me. I was contacted last week about the ambassador position (which took me NO time to accept), and asked if I would be able to make a last minute change and attend the walk as an Enjoy Life ambassador. I'm not going to lie, at first I felt a little thrown off because change is hard for me sometimes. It didn't take long for me to realize that this was a big opportunity and I changed up plans.
I arrived at Wash Park (SUCH a beautiful park!!), set up my tent and stared in amazement at the amount of samples I was given to share with the crowd. Seriously, there were a TON! I would later be even MORE amazed by the number of samples that were gone after the walk. People slowly started approaching my (*ahem* Enjoy Life's) tent and the stories slowly started coming in. People started realizing that I was at this event, not as just a company spokesperson, but as the mother of a severely food allergic child. As people came to realize this, they started flooding me with their own experiences and stories. I couldn't believe just how many wanted to share little pieces of their world with me. One woman in particular stands out in my memory. She had never heard of Enjoy Life before and upon hearing what "allergy friendly" means to the product (free of the top 8 allergens) she cried. I knew instantly why she was crying. These were tears of relief, it was the weight of the world being lifted from her shoulders for just a small moment in time. She cried because she read the label (to verify as ALL FA parents do, ALL of the time) and saw that it indeed was safe for her son. She cried because there was a sea of people surrounding her that shared the same fears, concerns and stories. She was crying because she was overwhelmed by this relief. You see, many FA parents spend our lives in fear of the unknown, the fear of one tiny mistake, we just fear for our children's lives. To be able to set that fear down for just a moment means letting our guard down, that is a relief, but different from any other form of relief one will experience. This woman thanked me for being there and asked if she could hug me (I'm NOT the hugging type of person, at all), before I knew what I was doing, I was reduced to a few tears myself and hugging this complete stranger. When I look back, she wasn't a stranger, she was kin, definitely kin.
The emotions of the day kept rolling in. I had dads running over to the tent just to tell me how much they love Enjoy Life and how thankful they are for such a company to exist. I know this gratitude and I know it well. There were grandparents, cousins, aunts/uncles and even friends of food allergic children/adults who knew the brand and knew it well. I can understand that as well, my parents will scour a store looking for two things: Sun Butter and Enjoy Life. There were people who wanted to ask questions for co-workers and taking brochures to share with them. This compassion and sharing just made my heart one big beating smile. The blessings of the day were so much more than I had anticipated.
On another note, I am a firm believe in Yin and Yang. Yesterday's Yang being the walk and the many blessings that poured out. The yin of the day came a few hours later, when I got the phone call that my grandfather was rushed to the hospital and suffering from dehydration and pneumonia. My grandfather is no longer a young man (by any stretch), he is no longer a healthy man and so this trip to the hospital could quite possibly turn bad, really bad.
I think the blessings of the earlier part of the day carried me through hearing this news about my grandfather and stayed with me through the night. There is no doubt that we needed our Yang before our Yin yesterday. I tell my children that God has a plan for all things, big and small. Yesterday, as I was getting ready for bed, I reviewed the day in my mind and realized, I was looking at the blue prints of Gods plan for the day.
I have YET another announcement, but this one deserves a separate post. I will post it today (hopefully) or early tomorrow. As I said, it's been a busy busy time for us, thank you for your patience through all of this.
Holidays, ever notice how many of them there are? Ever notice how many of them revolve around food? Oh Easter, Thanksgiving, Christmas, Valentines Day and B-days, why must you be surrounded by baking cakes, pies, cookies and the like? Then there are you BBQ holidays like Labor Day, Memorial Day, Independence Day. I love barbecue holidays, but must they all be filled with macaroni and potato salads, dips containing mayo, cookies, cakes and pies...?
I can't honestly tell you which of the holidays above are the worst of our minefields. When you think of all the baked goods going into these holidays and Liv's egg and peanut/tree nut allergies, it's all a bit mind numbing isn't it? Barbecues are sneaky little things for us, you never know if a dip is made of sour cream or sour cream and mayo (and did you know ranch dressing has egg in it?). THEN, of course there is the fact that barbecues are plain messy. People grab a spoonful of the offending salad (potato or macaroni) and plop it on their plate (or dips)....did they drop ANY of it in another food on the table between their plate and the salad bowl? Did they use the spoon that was IN the bowl originally? Did any fall somewhere that Liv will come in contact with? Oh the barbecues, how we hate to love them.
Easter + Anaphylactic egg allergy = UGH! I don't think anything else needs to even be said here, do you?
Then there is the SUPER duper hidden part of two of the more popular holidays, Santa and the BUNNY. Now, you wouldn't think these super "fun" (yes, that's sarcasm, ha) traditions are dangerous, but these lines get busy and hectic which translates into parents bringing snacks. Oh, wonderful messy anything-to-keep-my-kid-from-melting-down, snacks. You see the problem now? Being surrounded by FOOD in a hectic and close proximity is a less than ideal situation, so we avoid it. Liv has had one pic with the Easter Bunny (prior to her allergy diagnosis) and that will probably be the last.
What do we do for the holidays? We try like mad to avoid all the dangers we can. Most of our friends are willing to count out potato and macaroni salads. I don't think I've seen a deviled egg in years now...not that I miss those suckers, at all. As for Easter, we do crafts and learn what the REAL reason for Easter is. This goes for Christmas as well. Some moms bake with their kids, we craft. B-day parties, sadly, we avoid. What I've learned through all of this is not only what we're willing to give up and do as a family because of this illness, but how little we miss all that is given up.
Aha! You thought I forgot Halloween, didn't you?! No way could I ever in life forget THIS holiday. The holiday of HOLIDAYS when it comes to being food allergic (not to mention that it's one of my favorites). This one will be tough when Liv has a classroom next year, but for now we keep it simple. We dress up and we go trick-or-treating...every year. You see, this is one of the easier holidays for us (by us, I of course mean *me*). We have neighbors that have known me since *I* was Liv's age and they are pretty much the best. They either make a special "treat bag" for Liv, or I take them some to give her. That works out pretty well, but then I have also have my "dirty little secret"...the "fake-out bag". What is a "fake-out" bag? Simple, it's an identical bag that Liv leaves home with, but filled with candy she CAN have. So, here is how the whole scam goes down: We go out and use the "safe treat bags" that the earlier neighbors gave as mid trick-or-treat snacking, finish up the evening and when we get home, I swap out Liv's real bag of candy for the fake-out bag. So there you have it folks, this is how we navigate the holiday seasons aka the madness.
Thank goodness for "Liv Safe" treats, as we call them in our home.
And so where were we? Oh, that's right, nowhere in particular. After this last hospitalization of 2008 things seemed to have smoothed out some. There was the time two months later that an urgent care Dr gave Liv Zithromax for "double ear infections. Of course, she reacted and we rushed right back, this time to an ER. This is where we found out not only did she NOT have one ear infection, let alone two, but she is also EXTREMELY allergic to Azithromycin...super.
This would be followed up by a visit in the summer for a bee sting, well...we THINK a bee sting. Liv stated a "bee" stung her, but her Dr is inclined to think it was a yellow jacket as bees sting far less than we tend to think. Either way, she is labeled as bee/wasp/yellow jacket allergic. Of course, this isn't the simple not-too-bad kind of allergic, Azithromycin and the insect creatures are added to the Anaphylactic kind.
Other than these, we really just had a pretty calm year. Again, by calm, I mean one to two visits a month to the ER for "mystery reactions", several follow-up visits to the peds office, oh and the normal childhood instances that send far too many children to the ER...you know, like falling off the side of a trampoline (*sigh* allergic AND active, double whammy).
You might think that all of this is trying and wears on a person, and you'd be right - some of the time anyway. Most of the time, it's second nature or just like a second skin, to all of us. There have been times Liv has broken down in tears and wished she were "normal", but those times have just brought to light how strong our little family unit is. Tai has been quick to tell her in these times that she IS normal. She is just our "version" of normal (a phrase I use a lot around here). Our faith has also been strengthened by all of this, after all, God doesn't make mistakes and we make sure Liv knows this. I'm convinced that these allergies were given to our family as a double edged blessing, yes, blessing. You see, we are now FAR more aware of what we put into our daily meals. Tai, at only 11 years of age, is continually making better food decisions based on what we learn and teach together in label reading. Liv, I'm convinced is destined for big things...like helping to bring light to this subject. Yes, people realize food allergies are a problem for some, but do they know to what extent? I find that far too often, most people have no idea. Oh, and I now know how to spell Anaphylactic AND Azithromycin (see, always a lesson).
Now, I will say that my outlook isn't without fault or all sunshine and roses either. As of late, I've developed a fabulous case of anxiety issues. These anxiety "attacks" hit hard when they do and thankfully, not often.
**I'm not sure that this is a past OR present blog post, can we call it both?**
Let's just go ahead and pick this up in June of 2010.
I've tried with VERY little success to get a hold of the principal at "no-name Elementary". I've called the school's general number and left voice-mails as well as I've e-mailed him. No response. I've decided to take matters into my own hands and above/beyond the principal's control. I decided to call not only the school district's main office, but also our local office of Civil Rights. After getting an immediate response from The Office of Civil Rights, I suddenly also heard back from the district. Small miracle, but I even received an e-mail from the principal. I'm amazed at how suddenly getting back to me has become a priority.
There is a long list of what went wrong and where, but if you're ever in need of advice, I can definitely let you know what to watch for and how. I was caught completely off guard with just HOW bad our situation has been handled.
The district 504 coordinator has been in touch with me personally and taken over the whole process vs the principal taking any responsibility here. I will be sure to file a complaint with the district as well as a grievance against the school. I'm deeply saddened by this entire situation. I'm more than disappointed with the choice of FREE PUBLIC school we have available to us in our neighborhood.
I don't know where we're going from here at this point when it comes to schooling, but right now, nothing has me feeling okay with Liv going to "No-Name Elementary". That's sad.
So, I asked and I received! I asked for some questions that you all might have for me in regards to our life and how we live it...and you asked!
1. Liv doesn't know a "normal" menu when it comes to food, when you do the tests for soy and wheat and say she can have those, how will you go about introducing those new foods to her?
This is a great question and one I've pondered for a long time. Actually, it's more like I've tried to envision what this would be like! Once Liv goes through the process of doing food challenges to wheat and soy, I imagine the first thing we'll do is go on a family hike and pack a lunch of SANDWICHES. We might even finish the evening off with grilled cheese sandwiches and not just ANY grilled cheese, but I envision buying a few different kinds of cheese and making it a "gourmet" sandwich dinner! I can't tell you why this is my first meal of choice for her though, maybe because it's such a basic meal for most and a such a hurdle for us. As far as soy goes, I love using teryaki marinades and I typically will make a pan of food marinated for Tai and myself, then a separate pan of food for Liv that has a marinade just for her.
From that point, I think it will be like watching a child in a candy store! If you've never really read food labels, soy and wheat are in SO much! This is going to be an exciting new chapter for us, and maybe a bit overwhelming even. That's okay though, THAT kind of overwhelming won't make me throw things across my kitchen like a crazy woman ;).
2. What are your concerns with Liv and the school setting? (kinda vague question but with her starting school a possibility what are your specific concerns all together)
This question covers quite a broad area in our life right now. Liv IS scheduled to start Kindergarten this year (I will release more details on that as they come, or I feel comfortable sharing publicly). I have so many fears with school coming up. First and foremost, I have to hand over CONTROL over things to basically strangers. Am I a control freak? You betcha, just ask my ex-husband (okay, don't, ha). When it comes to Liv, I have pretty much taken "control" to a whole new level, but I feel, with good cause. I fear that a teacher or PERA will forget to clean something that is an everyday common object, like a computer keyboard. What's so wrong with this? EVERYTHING. The child using it before her just might have had a PB&J sandwich for lunch, or pb&j type snack....heck they might have had breakfast right before of eggs. Nothing wrong with that child eating any of that and touching the keyboard, but if it's not cleaned properly...well, I try to NOT imagine the rest of that thought. I fear that her teacher, principal, PERA, nurse or anybody at the school doesn't take her food allergies as serious as they are. I fear that things go well for a good amount of time and anybody responsible for Liv gets complacent...only to make a mistake. There are many fears that run through my mind at any given moment. The biggest of these fears though, is the fear of a reaction happening and the adult with her at that moment panics, or doesn't react in time, or just plain can't deal with the situation. I know that my child appears 95% of the time to be a healthy, happy, hyper, imaginative and "normal" child, but in minutes, seconds even....she can be taken from me. Yes, that is something that is always possible, to everybody, but the chances are a bit higher in my child's case and she walks through a minefield of hidden dangers every single day.
3. How will life change for the 3 of you when Liv is able to start eating foods she's never been allowed?
Honestly, I hope it doesn't change a TON. Does that sound completely weird and sadistic of me? Well, we've made a tradition of cooking together and reading labels together while making our meals. We've made a point to make sure a good percentage of foods we eat are made of 5 ingredients (on the label, not the meal itself) or less. Label reading is such a habit though, I don't know that much WILL change. Some nights might be made easier by being able to make quick and simple dishes though. Oh, I might have to put a lock on the pantry, Liv is quite the food lover and well, I can imagine she will be in food overload soon!
4."It's not fair to picky children to limit what they're allowed to eat because of one child's allergy." What do you say to parents who want to bring in treats to the classroom but expect to be able to bring whatever their child likes?
I feel that I have to approach this question in a gentle manner rather than aggressive. If I had somebody ask me this personally, I would start by softening my entire demeanor. I'd have to say that I would certainly be able to sympathize with their situation. So....here is the best "script" have to answer that...for the moment.
"I can certainly understand what a difficult situation that is, and I too am in that same boat, only the food restriction for my daughter is life and death. I want more than anything, for you to know it's not my intention to take away from your child's experience here in school, my only intention by making these requests is to keep MY child alive and thriving. I know it can seem like I'm this overbearing and paranoid mother, but I can assure you I am not (enter props....her medicines, medical records and pictures of her having a reaction). You see, avoiding her food allergies is only a PART of our battle. These meds are taken by Liv every single day, some of them multiple times a day...just to help keep her immune system from being in a constant frenzy. (Point to her records and pictures) Sometimes all these meds and avoidance aren't even enough to do the trick. Liv has had WAY more than her share of ER trips and reactions in her short little life."
I do have a video that I would LOVE more than anything to share with the parents of Liv's future classmates. I don't know that the school will allow it, but I will share it here.
VIDEO
5. How has Tai handled these food allergies, being a non-allergic child himself?
Tai has been such an inspiration to me. He is an extremely laid back, super intelligent, but paaaainfully shy child. There have been times however that he's spoken up to strangers offering Liv food (samples at stores, bakery at stores offering cookies, etc...). He is quick to make sure others know they cannot just go offering his sister anything at all. I love seeing this protective big brother come out in him and I hope that maybe someday Liv sees all he is doing for her as well. He's had no problem giving up some very basic foods like eggs, cookies, peanut butter (and believe me, we were some peanut butter loving FOOLS pre-allergic Liv :) ) and an endless list of candies. Like I said, the kid is an inspiration. He does this in SPITE of all the annoying little sister things Liv does to drive him crazy ;).
6. Just how AWARE of her allergies is Liv? Does she know what all she is allergic to?
Oh yes, she knows her list backwards and forwards. This is vital information that I've made a point to repeat to her and have her repeat back to me several times a day...everyday. She knows what her Epi-Pen does and where it is at all times. She carries a backpack everywhere with her (it holds her Benadryl and her Epi-pen) she keeps the backpack with and on her at all times for the unfortunate event that she should somehow become lost in a store...or really anywhere. She NEEDS to have her meds with HER. She knows this and follows this. Does she understand how serious this all is, well...I think she gets it as well as a 4 year old can. She's been rushed to hospitals by me as well as by fire rescue with full lights and sirens. She might not fully understand "life and death", but she knows the sense of urgency around her in a bad situation.
Well, that is all the questions I've received this week, but please...PLEASE feel free to contact me and send as many as you like. I promise to read and reply to as many as I'm able.
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**
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! :)
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?
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!
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 ;).
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.
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.
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!
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)!
So where are we....oh yes, somewhere in the fall of 2006 and recently diagnosed with an egg allergy...an anaphylaxis allergy at that.
I start the process of scouring the internet for as much information as I can get my hands on. I don't advise using google as a means to a diagnosis, or to help find your sanity in any of this, it definitely is not good for either. I find out that egg is one of the top allergens for children under five. These top allergens are referred to as the "Top Eight". This "Top Eight" would soon become a vital part of life for us. It is also widely published that most children outgrow these allergens by age 5. Hallelujah, there is light at the end of the tunnel!
After reading for hours on end about an egg food allergy, I decide Liv needs to see an allergist ASAP. Well, ASAP in the military world turned into a 2 almost 3 month wait. I took her to three Dr appointments, my only mission was to get the ever elusive referral for the allergist. I was told by the first Dr that there was no need to worry, just avoid egg at all costs. The second two were no better than the first; I was told that at just over a year old, Liv was not old enough to have allergy testing done. That last Dr, must have seen something in my eyes change because before I was able to blurt out the train of profanities I had running through my mind....he caved. He was CERTAIN that the allergist would tell me the same as him and we'd move forward; him being right and me being wrong. Never EVER underestimate a woman's intuition...right? Well, I would suggest that you also file "mother's intuition" under the "do not dis-regard" and "do not under any circumstances....question" files. I'm just giving advice that is best for all involved here.
I get Liv on the waiting list for an allergist in Topeka, about an hour drive away. I quickly realize that living in nowhere KS stinks when it comes to specialty care.
A month or so passes and it's GO time! Time for testing! I have no idea what I'm in for here, but we make the trip to the allergist. The allergist is pretty aloof and not so people friendly, but she does an adequate job of explaining what the test is and what it can mean. She promptly sends us back to Ft Riley after a quick blood draw. It takes one to two weeks to get blood results back. The blood test is called a RAST test and typically given only if a child has had an anaphylaxis reaction. It's just too deadly to even touch them with any possible allergen, much less the one that put them in such a deadly situation to begin with.
I let about a week and a half go by and I just can't take the anticipation anymore...I need answers! I call the allergist and get her results...the nurse reading the results explains to me that any reaction level over 0.50 means she is allergic. *DRUUUUUM ROLL PLEASE*
Wheat - 0.62 (not so bad, but not really expected) Soy - 2.00 (not great, not deadly...even less expected than the wheat) Peanuts - 26.50 (WHAT?!! Oh holy heck...what are we getting into here?!) Eggs - 28.75 (Well slap me in the face, Shocker *drippppping with sarcasm*) Dogs - .75 (minimal and again, not entirely expected) Cats - 10.5 (Really?! Crap, we just got a kitten that Liv loves! Booo) Other than cats and dogs, no environmental (PRAISE the LORD for the little things!)
Now, I wish I could say that I took this news in stride and was strong about it. I wasn't. I was anything BUT okay. My first mission: Call ALL THREE Dr's that blew us off at the clinic and give them her results. I don't know why I needed to do this, but I did...and I even felt just the slightest bit better after those calls. I can't pretend that I am a rational creature, and when it comes to my children...what little rationality I have is quickly lost.
I then email all of this to my husband (now ex) who was at the time doing a tour in Kuwait. Finding out all of this alone was not easy, but it prepared me for what was to come in the next few years. Emailing this to her father made me feel no better as there was no comforting involved (only because we couldn't talk about it and he'd not yet been able to call/respond to this). I called my mom and dad aka my ROCKS. My parents have never been very comforting people, but between this diagnosis and the news of my separation from my husband....they were everything and then some at this time. My parents were exactly what I needed. They quickly related and assured me things would be okay. They COULD relate because of how bad of an Asthmatic I was as a child (SEVERE Asthmatic even going to National Jewish myself). The phone calls to the Dr's, email to my husband and phone call to my parents happened over a time span of maybe an hour. This was nowhere near the time I needed to really accept this and move on. I cried. I cried a LOT. I then proceeded down to Liv's snack cupboard and starting throwing things across the kitchen that had any of her allergens. Yep, cleaned out her cupboard entirely and ended up sweeping ... a lot. Again, I stress that I'm not a rational person and I felt okay with physically throwing these across the kitchen. In fact, I felt better after that. I felt comfort in hurting the foods that were hurting my baby. Do I sound like a total nut case yet? Oh, it gets better...just you wait. Oh, almost a week later we found a new home for the kitten :(.
*These posts get away from me and get longer than I originally intend....my apologies for that* **You will hear as time goes on about me and how I dealt with these trials/triumphs...mostly about me because I cannot speak for my ex husband. I do not want any bashing on him, or bad thoughts for not being around either....he is active duty Army and cannot be around. Please respect the balance he, his wife and myself have found over time (as our goal is to give Liv and her brother the best outlook on life and family as we possibly can). Thank you**
Can't wait to pick up from here soon! (I'm finding this to be quite therapeutic, btw)
