And so where were we? Oh, that's right, nowhere in particular. After this last hospitalization of 2008 things seemed to have smoothed out some. There was the time two months later that an urgent care Dr gave Liv Zithromax for "double ear infections. Of course, she reacted and we rushed right back, this time to an ER. This is where we found out not only did she NOT have one ear infection, let alone two, but she is also EXTREMELY allergic to Azithromycin...super.
This would be followed up by a visit in the summer for a bee sting, well...we THINK a bee sting. Liv stated a "bee" stung her, but her Dr is inclined to think it was a yellow jacket as bees sting far less than we tend to think. Either way, she is labeled as bee/wasp/yellow jacket allergic. Of course, this isn't the simple not-too-bad kind of allergic, Azithromycin and the insect creatures are added to the Anaphylactic kind.
Other than these, we really just had a pretty calm year. Again, by calm, I mean one to two visits a month to the ER for "mystery reactions", several follow-up visits to the peds office, oh and the normal childhood instances that send far too many children to the ER...you know, like falling off the side of a trampoline (*sigh* allergic AND active, double whammy).
You might think that all of this is trying and wears on a person, and you'd be right - some of the time anyway. Most of the time, it's second nature or just like a second skin, to all of us. There have been times Liv has broken down in tears and wished she were "normal", but those times have just brought to light how strong our little family unit is. Tai has been quick to tell her in these times that she IS normal. She is just our "version" of normal (a phrase I use a lot around here). Our faith has also been strengthened by all of this, after all, God doesn't make mistakes and we make sure Liv knows this. I'm convinced that these allergies were given to our family as a double edged blessing, yes, blessing. You see, we are now FAR more aware of what we put into our daily meals. Tai, at only 11 years of age, is continually making better food decisions based on what we learn and teach together in label reading. Liv, I'm convinced is destined for big things...like helping to bring light to this subject. Yes, people realize food allergies are a problem for some, but do they know to what extent? I find that far too often, most people have no idea. Oh, and I now know how to spell Anaphylactic AND Azithromycin (see, always a lesson).
Now, I will say that my outlook isn't without fault or all sunshine and roses either. As of late, I've developed a fabulous case of anxiety issues. These anxiety "attacks" hit hard when they do and thankfully, not often.
**I'm not sure that this is a past OR present blog post, can we call it both?**
Alrighty, returning to this blogs true form of past and present postings, here is a present post.
So, over this summer, I've debated back and forth SO many times on what I was going to do about Liv's educational needs this coming fall. I thought of holding off and putting her in school next year, rather than this year since her birthday is only 3 days before the cutoff date. I've thought maybe "No-Name" (read: the BIGGEST school district in the state) school district would get their act together and the 504 would work itself out, it has not. They've sent me a draft of what they'd LIKE to put in place as Liv's 504 and honestly, I'm not even sure WHY they bothered. They kept it as brief and with as little detail as they could legally get away with. I mean one example of it's negligence is the wording for her egg allergy. To quote the "drafted 504" she is allergic to "raw eggs (freshly baked goods)." This presents a big problem for us, Liv is more than just allergic to "raw egg and egg in freshly baked products", my girl can't even come in contact with TRACE AMOUNTS of egg/Albumin/Globulin/Meringue (well, you get the idea...there are a TON of names for Egg listed in foods). None of these names were mentioned in the slightest on the 504. You can see a better list of names for eggs HERE. This 504 also states that her exposure to allergens needs to be limited during times of eating and snacks. Um...again, a NO GO here. "LIMIT"??? Uh, how about no room for error? My last point that I will harp on with the 504 (there are many issues...but I'll keep it brief for you :) ) is its complete lack of mentioning her Epi-Pen. You see, the principal and I have been at complete odds about her Epi-Pen and where it is to be kept. He wants it in the office....in the OFFICE locked up! I told him that I don't care about policy, she NEEDS it with her at all times...ALL times. For goodness sakes, she carries her Epi Pen "on her person" 24/7 as it is right now, she has done so for years already. The point is, when something goes wrong **KNOCK on WOOD/God forbid**, she needs that Epi-Pen within SECONDS in order to save her life. Oh, I'm getting carried away, sorry. Anyway, it seems that it went from us going back and forth over the Epi Pen issue to them just forgetting about it entirely, most likely hoping I'd overlook this issue. Yeah, RIGHT. So....that's that on the topic of the "proposed 504 draft."
On to some more issues at hand with the school district/principal at "no name" elementary. The principal finally contacts me last week requesting to meet with me on 08/13/2010. Seems like this is okay and reasonable, right? Wrong. School registration is on 08/04/2010 and the first day of school is 08/23/2010. This gives me ten CALENDAR days from the meeting til the first day of school. Now, had the principal NOT dropped the ball last SCHOOL year when I went in to start this process...we would have this done ALREADY. I'm a little more than frustrated, in case you couldn't tell.
Now, I don't know a single person that would trust this school with their FA child and Liv's father and I are not about to test their efforts either. What's the decision we've come to?? Home school. Well, sort of. There is a public school that is tuition free and online. Sounds kinda extreme and maybe even a but weird, right? I know, I thought that also, until I checked out the website and spoke with several staff members. Here in CO, it's called COVA (Colorado Virtual Academy). If you would like to read more on this you can check out k12 here. It is fully guided and graded by an actual teacher, I would just be a "guide". Only about 15% of Liv's curriculum will be online. How in the world am I going to do this?? Well, just like everything else I do, with 110% effort. I work part-time in order to balance my work schedule with Liv's schedule (Dr appts with regular Dr's, specialists, emergency situations...just all around gives me more flexibility) and Kindergarten is only part-time. Somewhere in here, we will fit her required hours of school in and be a fully functional family...maybe not sane, but definitely functional. The other perk to this is I can delay her immunizations a bit longer. I know I could sign the waiver for regular public school, but why chance it with so many kids around? This way, it's just us and we can do the immunizations a bit more staggered.
What am I doing about the school?? I'm fighting like hell for the rights of future FA students there is what I'm doing. I'm just fighting them without my child attending there. With all the legislation being passed this summer in Colorado, the school doesn't really have a leg to stand on and I will be the voice our community needs. I can't see backing out now and letting another poor unsuspecting family deal with this nonsense. It doesn't hurt that I'm already an active member of the school's accountability committee which is a group of parents that serves as liaison between the parents of students and the district, bonus for me.
SO, at this point, I am publicly announcing that I've chosen to put Liv into Kindergarten this year, just not at our local public elementary school. As for next year, Liv will attend a charter school in Littleton. The principal of this school is a friend of mine AND has a child with food allergies just like Liv. She is wonderful and she totally understands the needs Liv has. It's just unfortunate that her Kindergarten is already full with a HUGE wait list, or Liv would be going there this year.
WHEW!!! So sorry about that absence, I was working on a pretty neat project, which I will inform you about at a later date and time. *TEASER*, I know!
Well, I'm just going to jump right back in here. So we'll go right back to Dec of 08, Liv was released from the hospital and healing rather nicely from her surgery. That is, until 12/29/2008, when she woke in the middle of the night coughing and lips turning blue from having difficulty breathing. Now, I'm a fairly calm person and typically good under pressure so I give her a breathing treatment right away and call Children's. All seems to be going okay and Liv started recovering, for all of about 10 mins and the whole thing started over again. I again, gave her a breathing treatment and waited on the nurse to call back (she promised she would within 20 mins to check on the situation). The situation was anything but okay and I rushed Liv to the ER where they came pretty close to intubating her. Finally, after a slew of breathing treatments, IV steroids and raising her heart rate to some seriously scary levels, she was breathing pretty decently again. You could tell the nurses were concerned with her heart rate, I mean, when I saw it go over 200 beats MY heart rate started racing. Somewhere in there the nurse and I got our instincts in sync. We both looked up at the heart monitor, looked at each other, nodded (seriously...it was totally unspoken communication here), the nurse turned the lights off and I quickly got into this tiny little bed with Liv. I laid her on my tummy/chest and just rubbed her head and back. The power of a mother's touch is something I will never fully grasp, but within minutes Liv was sleeping and quickly reaching a normal heart rate again.
About a half hour later, the nurse returned and thanked me for keeping my composure, I tell ya...those nurse/Dr "kudos" mean so much to hear in these kinds of situations. She also informed me that they were preparing a room upstairs as Liv was being admitted. Um...did I mention this was almost New Years Eve? That's two holidays in one month that we ALMOST spent in the hospital and honestly, even that is okay, as long as my girl is healthy.
We spent the night and were discharged early afternoon on the 30th. Basically what happened was all tied to Liv's immune system. Since she had just had surgery, her already sketchy immune system (I'll explain why it's sketchy later in this post) was being compramised. Somewhere between being discharged after her surgery and her repeat visit to the hospital she'd picked up a respiratory virus that turned into a small case of fluid in her lungs, not pneumonia though. Yay for a happy and healthy New Years Eve the next day .... we brought it in sleeping. :)
**Her already sketchy immune system is due to her having the food allergies. Basically, an allergy is caused by the immune system over-reacting to a normally safe protein. You see, when Liv encounters one of her allergens and has so many symptoms, those are all caused because her immune system sees that allergen as "the enemy". The immune system starts going insane and attacking itself in an effort to rid the body of "the enemy."***
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?
Our love to all!
Surgery cont'd
My mom and I left the operating room to get something to eat (neither of us had any breakfast since Liv couldn't eat...we refused to eat in front of her). I honestly wasn't all that hungry,nor was my mom. My mom was pretty shaken by watching them get Liv ready for her surgery. We each chose bagels, ate quickly and went back up to the waiting room. By this time I really wished I'd thought out the bag packing situation a bit better...everywhere we went, so did our bags, UGH!
Between leaving Liv in the operating room, gathering our bags, grabbing a bite to eat and heading back up to the waiting room only 15 minutes had passed. We sat down in the waiting room for maybe 2 minutes and the receptionist came to tell us Liv was in recovery. Seriously, a 30 minute surgery done in about 15 minutes, crazy. We were lead down the hall to Liv's bed in recovery...we were about halfway there and I heard her. My baby was screaming at the top of her little lungs for her mommy. UGH, my heart just broke to pieces on the spot. I dropped all I was carrying (I'm sure my mom appreciated THAT one) and ran to her. There was somebody holding her and rocking her, but she wanted nothing to do with them and wanted her momma. I've never felt my heart just ache like that before. The moment I had her in my arms, she buried her face into me and just sobbed, I let a few extra tears slip. Before I knew it, she'd calmed and wanted a popsicle. Yep, right out of surgery she was ready for a popsicle, awesome! Later we would find out that was only due to the amount of drugs she was on. She couldn't feel a thing at that point. Her ENT/surgeon came in to inform us the surgery was a success and my little girl no longer had tonsils or adenoids (both were extremely enlarged). BTW, how clever were they to put Liv's IV in AFTER she was asleep for surgery?! I love Children's Hospital, I really do.
After about an hour in recovery we were escorted to her room up on the 7th floor. If you don't know this about Denver Children's Hospital...the 7th floor is also the oncology floor, talk about a powerful and MOVING moment to walk off that elevator. Liv was given her own room (as all are up on this floor) and was placed on this floor due to her even more than normal compromised immune system. After hours of fighting off her meds, she finally fell asleep.
Her surgery bears had already been sent up and were waiting in her bed for her.
So peaceful.
When she woke from this nap, it was anything but pretty. My poor baby was in a cold sweat from pain, screaming because she had feeling back in her little body and once again, crying for momma to hold her. I had no problem with holding her as tight and for as long as she wanted. The nurse was pretty quick with giving her some pain meds orally and in her IV. They were giving her some pretty heavy narcotics as she quickly calmed and was ready to color! This was followed by her being hungry, so I ordered up some mashed potatoes and green beans for her supper. I made sure to mash up the green beans and gave her a bite, she did fine. The mashed potatoes however, had a slight error somewhere in the preparation process...they were salted. What happened after her first bite of the potatoes went just like you would imagine. She quickly spit it out, recoiled and cried. I couldn't figure out what was wrong, so I tried the potatoes myself and that's when I knew what happened :(. After the potatoes, even if offered a popsicle, she refused. The Dr., nurse and myself talked it over and figured we'd let her rest for the night. She would stay on her IV drip that night to keep hydrated and we'd tackle the food eating again in the morning. Easy enough, right? Wrong.
Once again, I feel this is a good place to pause in the story as we have a bit more to go. SORRY! I should have this post finished by tomorrow (maybe tonight if we call it a night early).
Have a WONDERFUL Fourth of July everyone, stay safe out there!!
I need to finish the "surgery" post, and I will....pinky swear. Today, I'm trying something a bit different from my prior posts....How about getting to know Liv, Tai and myself some? I'm going to post today (and hopefully each Friday) 10 facts about us each.
Here goes!
Tai:
1) Tai is 11 years old and he is taller than me (yikes!). 2) Tai's favorite color is green. 3) He is PAINFULLY shy and hides like you wouldn't believe when my camera comes out (which is a lot). 4) Has wrestled for the better part of the last 5 years. 5) Loves playing golf 6) Loves soccer 7) Loves swimming and is joining a team this year, but his true water sport of choice is diving (noticing a trend here....sports. Are. Life.) 8) Is a good shot with his bow and arrow 9) Is an even better shot with a gun (at the range....I feel like I MUST add a disclaimer to that one) 10) Tai is a super duper cool Left handed dude.
Liv's 10 1) Olivia wants to be Taylor Swift when she grows up 2) She also wants to be a fire-woman and a cowgirl (I don't have the heart to break it to her that the horse allergy is going to kill that dream :( ) 3) Liv has this amazing way of memorizing movie quotes....it's crazy and funny at the same time 4) As well as she remembers movie lines, she remembers song lyrics even better 5) Okay, truth be told...Liv has my memory and rarely forgets anything....it's annoying and now I know how others feel with me around.... 6) She will sit through entire football, basketball and soccer games with no complaints. 7) Liv is quite the um..."fact finder" (translation; she is NOSY!! :P) 8) Just about a year ago, she chopped off almost 9" of hair (thank goodness her hair grows fast!). 9) She is SUCH the loving little snuggle bug. She always wants affection (I love that). 10) Liv is a firm believer in doing all things for herself...by herself.
My 10
1) I'm shorter than my 11 year old son :O ha! 2) I will do anything at all for my children 3)It's true...Liv has inherited my memory. 4)The only thing I love about the fall is Football and I. Love. Football. 5) I can tell you that Liv was born on a Tuesday morning because I went into labor during a Monday Night Football game...Broncos vs KC and we lived in KS at the time. Yes, football is that serious. 6) I was a teen mother and had Tai just two weeks after I turned 18 (talk about a journey with him) 7) I do NOT love seafood. Not. At. All. 8) I love thunder storms 9) Hate the smell of rain. 10) I get along best with those that have mastered the art of sarcasm.
That's really all I have for tonight, I just thought that with all that I've posted....y'all don't really even "know" us. Thought I should go ahead and fix that ;).
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!
