The un-expected side-effects of having a severely allergic child.

Obviously having bravo and his allergies in his life has changed me as a parent and as a person, in a lot of different ways. But I’ve noticed one change that I would never have thought about. And I’m not alone. Matt has the same problem now.

We cannot watch TV or see an add or go to a conference or see a new restruaunt without thinking of Bravo. And his inevitable death if he consumed whatever it is that is being promoted.

You know that stupid Philly Cream Cheese commercial? “spread a little love, today, spread a little happiness blah blah, something neener neener to remember” (I’m good at lyrics, can’t you tell?) wait…   that’s the song. Not the commercial, but the real full song. And I just listened to it and I WOULD think it was a happy cute little song that I would add to my “bobby head music” playlist IF…..
if I didn’t think of stupid cream cheese every time and if in my head the words didn’t change to “spread a little death today, spread a little death to Bravo, make it a shitty day to remember”. But seriously, that’s what goes through my head. Every single time I see the commercial. Because yes, the food does look delicious. And I would LOVE to cook with cream cheese! But, and this is a big hhuge BUT, it would kill bravo. In about 12 seconds. So, um, they can keep their love.

I sit here at work and I just ate a cream egg (I keep hoping they’re going to be good like I remember from when I was a kid and then I just feel nauseated from far too much sugar in one mouthful. Which is saying something because I could eat a spoon of straight sugar and still think it’s not enough sugar) and as I bit into it and the gooey mess dripped down the side I thought “how many ingredients in this would kill Bravo?”. I can’t help it. It’s this automatic reaction I have.

Matt went to a conference the other week and there was the typical lunch buffet. He got to the first part with the fruit plate and the cheese platter and the meats and buns etc etc etc. And he made a random passing comment to his co-worker of “huh, Bravo wouldn’t be able to eat any of this” The co-worker, who knows all about bravo, asked why he couldn’t eat the fruit. Matt’s answer? “look at what you’re doing”. She had used the same pair of tongs from the cheese buns on the strawberries. Making the whole platter of fruit death-on-a-plate. A light went on int the coworkers head and she asked if there was ANYTHING that our boy would be able to eat. And the only thing there that would be safe would be a banana from the bruised basket of fruit at the end. Worst case is he would get a rash on his hand from cross contamination on the peel. He could eat the apple if he took it to the bathroom first and scrubbed it with soap. But anything else…. Nope. Milk, mayonnaise, cheese, soy, beans, nuts, peanuts, they lurk everywhere. They’re the buffet’s best friend. He would be able to do the plain salad if he talked to the hotel first and ensured proper preparation conditions and then he got to the salad before anybody else put dirty tongs into it. But that would be taking a big risk. Sad when eating lettuce could be the end of you. Or at least cause a lot of pain and drama and an ambulance bill.

I don’t like this change in me. I don’t like feeling bitter at all the yummy commercials. Campbell’s mushroom soup? Death. I hate food commercials.

I was watching some really crappy cooking show on Shaw TV or something lame like that and I watched the first 45 seconds. And in that 45 seconds they used 5 different ingredients that Bravo is allergic to. So I turned it off.

Every time I hear about something, like a family road trip, all that goes through my head is the logistics of that with a bravo-type kid. No starting the road trip with McDonalds drive through. Meals…. That terrifies me. The amount of research we would have to do first is insane. Where along the whole route could he eat? And where near that is the nearest emergency facility? How far is the longest stretch between hospitals that could care for a small child in anaphylactic shock? Divide the longest time by 15 minutes and that’s how many epi pens we would need to have on us. Is the break between hospitals 45 minutes? Then we need 3 epi pens at all times. Because if he somehow gets bad things into him, an epi pen may only last 15 minutes before he needs another shot or other emergent care.

I can’t go through normal life, seeing and hearing every day stories, without thinking of how scary this world is for a little tiny child with big huge allergies. And I worry for him when he is older if he doesn’t outgrow this. Band trips? Sport trips? Road trips with friends? TERRIFYING. And likely not possible.

I wish this wasn’t a constant presence in my head.

Or that at least the allergic community would start making and advertising affordable and safe foods for people with multiple food allergies.

And I also wish I lived in Montreal. For this one reason.

I would LOVE to take bravo out for supper.
A restaurant that bans all the major 8 food allergens. Amazing. That doesn’t count legumes aside from soy and peanuts, but I’m pretty sure they would take all precautions when informed. And they carry epi pens in case a diner has a reaction and doesn’t have their epi pen on them. That amazing!!

Maybe one day I’ll win a whack load of money and then get the people who made this restaurant to do a franchise in Winnipeg. If you do live in Montreal, you should go there and then tell me how it is. And if the food is good despite being made of all Bravo-friendly things.

Oh- My new answer to people when they find out about Bravo’s food allergies and then ask “so what DO you feed him?” It's “soylent green” And I’m delighted when I get the response back of “it’s people!” instead of the confused look I normally get.

What am I even talking about any more???

living life with a highly allergic kid

I’m done. Me and bravo, we quit. No more allergies. No more reactions. No more stupid fucking allergies.

You hear me, allergy gods?

I’m done.

Too bad you don’t give a crap about us.

I’m angry right now.

And I’m sad.

And I’m heartbroken for my sweet bravo.

And I’m tired.

Wow, am I ever tired.

I hate allergies. I hate what they do to lives.

I hate that people don’t understand them.

I hate that they are seen as a “nuisance” for non-allergic families.

I hate that the word "allergy" is so over-used and is used to describe "my belly hurts" or 'my eyes are itchy". which, yes, it may be annoying, but every person complaining of their mild irritations from allergies really lessens the impact when you say your child is allergic to multiple foods. I'm not talking about a stomach ache. I'm talking about potential death.

I hate the worry that comes with them.

I hate the fear I live in.

I hate telling my beautiful boy that he can’t have what others are eating.

I hate having to pretend everything is fine.

I hate trying to be positive about it all.

I hate living like this.
I hate that it’s happening to my sweet tiny boy.

I hate that at any second some benign particle could wind up in bravos system and take him away from me.

I hate that we will never have all the answers. Just when we think we have his allergies all pinned down he has yet another reaction to some new food.

I hate it when people tell me there are worse things that could happen to our family. Yup. I know that. There are much worse chronic medical conditions that bravo could have. Aren’t we lucky that we only have allergies. Because it’s easy and fun. And I’m not worried about him dying every single day.

I hate that kids with multiple anaphylactic food allergies are not covered under the disability act. They have no protection, no rights, no one fighting for them but their ill-equipped parents, no laws to protect them in school (unless you happen to live in Ontario where they have Sabrina’s Law which was passed because a child died of allergies in a school), no help for the insane costs associated with the grocery bill of multiple food allergy kids.

I went to the health food store yesterday. I bought 2 bags of allergy-free chocolate chips, 1 tub of soy free/ dairy free yogurt, 1 tub of bravo- safe margarine,  and 2 small jars of sunflower seed butter. And it cost $68. If I went to walmart and bought the same items in a non-allergic form it would have been under $20. But according to the government having multiple food allergies does not present a financial challenge to families. Clearly nobody that’s in the decision making department has ever lived with this. The funny thing is that people with celiac disease can write off their food. BUT… if a person has an allergy to wheat and barley they do NOT get to claim the exact same foods. Even though it could cause anaphylaxis and death. Which apparently is not as bad as the stomach problems caused by celiac. (please anybody reading this that has celiac don’t take offense. You should be helped, I’m not mad at you. And I know it’s worse than a belly ache and it’s a serious disease. I just think the system is stupid and I’m angry right now.)

BUT.. on the good side, we don’t have to buy the $6 miniscule tub of soy free dairy free yogurt any more. Because, surprise, Bravo is allergic to it. I have no idea what in it caused the allergy. I need to study the ingredients and do some research on it. It might be coconut. So until we know otherwise, I guess we’re adding one more food to our Avoid List. Which, by the way, is getting really stupid.

oh- an update. I googled every single ingredient on the list and it's most likely locust extract, which is from the carob bean, which we had been avoiding. Stupid me didn't know that locust extract is another name for carob bean. Super.

I feel like I'm failing bravo. His poor little system just needs a break.

My first post today was much happier but i couldn't wait to post this becasue I'm just so sad and anrgy.

Allergies. How many hours have I spent thinking of them? Hating them, trying to figure them out, trying to understand them or explain them, worrying about them, trying to figure out how to meet the needs of all family members while keeping little bravo safe? I’m not sure how many hours, but it’s got to be getting up there by now. It was 2 years and 4 months since they came onto my radar. And it’s only gotten worse.

I’m tired of thinking about them, but I just don’t have the luxury of NOT thinking of them. If I didn’t spend so much of my time on them then my baby would not be here. The fun part is figuring out cooking challenges and discovering new non-allergic ways of doing things. The crappy part is, well, everything else.

I’m now losing hope that my boy will outgrow his allergies. Some of them, sure, but not the biggie. Not Milk. And almost for sure not peanuts, but that one is SO avoidable and the masses automatically think ‘peanut” when you say “allergy”.

We got bravo’s allergy results back. He had a RAST test done. Now- this test makes no sense to me.

Radioallergosorbent test. That’s the fancy name for it.

The simple part of it is that all we do is get some blood taken. And then some fancy laboratory voo-doo takes place. They take the allergen and bind it to a solid polymer and add it to the blood. Ok- I’m following so far. In people with allergies there is something called IgE in the blood. Or- immunoglobulin E. Each allergen has a specific IgE that will bind to it. Ok- I’m still mostly following. They watch the blood and the allergen and IgE clump together, they “wash” the blood and just leave the allergen and the specific IgE so that they can do the next part. Which is where they lose me completely. I was OK up to this point, but now…..

A serum of radioactive anti-IgE, which is derived from people who are known to be allergic to the allergen being tested for, is then added, allowing technicians to determine the concentration of allergen-specific IgE in the patient's blood.

Huh? So they take my kids blood, add some milk or soy or egg or whatever to it, swish it around, watch it clump together, get rid of the parts that aren’t clumped, add some radioactive blood from some other person that IS allergic to it and then count to see how much allergen specific IgE is in my kid’s blood to determine where on the scale of allergic he is. Right. I am SO not smart enough to understand this. They may as well be dancing over the vile of blood with an engraved wooden stick. I would understand it to about the same degree. But whatever- it’s not a skin prick test and they can test for a whole bunch of allergies from one blood sample which makes getting bravo tested SO much easier.

So once this scientific voodoo takes place they come back with numbers from 0- >100. Which is then broken down into a smaller scale of 0-6. 0 being “eat all you want, there are no allergen specific IgE present” 6 being “stay the hell away this will cause instant death and a lot of pain and suffering even if you don’t die”. Or something like that. That’s my vague interpretation anyway. Actually- all it says is that 6 is more than 100 of the IgE floating around in your blood. People can have this much and not have a reaction any worse than some hives or eczema. It’s kind of an incomplete test. It needs to be paired with a history and food challenges if the numbers aren’t crazy high and maybe a skin prick test. No allergy test is really all that helpful without a reaction history.

Allergies are SO well understood.

Here’s the really helpful chart.

RAST rating	IgE level (KU/L)	comment
0	< 0.35	ABSENT OR UNDETECTABLE ALLERGEN SPECIFIC IgE
1	0.35 - 0.69	LOW LEVEL OF ALLERGEN SPECIFIC IgE
2	0.70 - 3.49	MODERATE LEVEL OF ALLERGEN SPECIFIC IgE
3	3.50 - 17.49	HIGH LEVEL OF ALLERGEN SPECIFIC IgE
4	17.50 - 49.99	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
5	50.0 - 100.00	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
6	> 100.00	EXTREMELY HIGH LEVEL OF ALLERGEN SPECIFIC IgE

You have to be at least a 3 (or an IgE of 10) for it generally to be considered life-threatening. If the IgE is under 2 (so a RAST level of mid 2 or under) they say that you’re unlikely to have a reaction and you’re good to go for trying a food challenge. For soy, typically the IgE has to be like 50 or something. I don’t remember but it was really high.

So Bravo. His old numbers were: soy- 0.6, milk- 29, egg- 29, peanuts- 8, chickpeas- not tested.

His new numbers are: soy- 1.9, milk- >100 (scary), egg- 19, peanuts- 19, chickpeas- I don’t remember but under 2.

So he has 2 #1s, 2 #4s and a 6. The 6 scares the crap out of me. That’s the one that causes him a reaction from tiny tiny amounts that we can’t see. The one that’s instant death if we don’t have 2 epi pens on us.

The other thing that can happen is a food intolerance. Allergies are immune based. Intolerances are gut-based. Too much of the food and you barf and have the trots and feel generally miserable for a few days (or however long for your particular system). Soy protein intolerance is pretty common in little guys and is virtually always outgrown by the age of 2. Bravo is 2 years and 9 months old.

So they told us that bravo wasn’t allergic enough to soy and chickpeas to be concerned and we could try some challenges. Which is when you go to the hospital allergy clinic and they give tiny amounts of soy milk (or whatever is being tried) in increasing amounts every 20 minutes or so. Good. They do it in the hospital setting so that there are emergency people there if needed. When we started Bravos challenge we were told that there was a 99% chance of there being 0 reaction. Ha!!

2 hours after Bravo’s first dose of soy (he had a total of 3 ounces spread out over 2 hours) he complained of a tummy ache. It rapidly escalated from there. He began throwing up and kept throwing up every 5-10 minutes for 4 hours. After about an hour of the throwing up he went grey and his eyes rolled back into his head and his heart rate went crazy. I picked up my boy, had him draped over my arms, and ran yelling into the hallway. They put him back on the bed and gave him epinephrine and checked his vitals every 5 minutes for the next hour. He was so tired. His little body was just exhausted. He kept falling asleep only to wake up heaving as the poison tried to escape his body. Only there was nothing left in the poor kid.

Once he was out of the really scary woods we had a chat with the allergist and this is what it boils down to for bravo. He’s special. Super duper special. He’s one of the exceptional rare kids who has BOTH a soy protein intolerance and a soy allergy. But his allergy levels are low and he’s too old for an intolerance. Neither should be an issue. So basically what happened is this: he had a reaction from the intolerance he shouldn’t have that triggered an anaphylactic reaction he shouldn’t have and the two combined to become life threatening. Our very very VERY old allergist who has been doing this for, I don’t know, about a million years, said he has seen this only once before. Fun. Isn’t it nice to be special.

The nurses and doctor there were amazing though and really kind and helpful. We’re not challenging chick peas any time soon because we’re just plain tired. And our ethnic background is just about as white as you can get (English, Irish, Scottish, and German) so it’s not like chickpeas are a big part of our diet and we’ve been avoiding them for the past 2 years. Another year or 2 will not really matter.

I’m just so discouraged right now. Until this week I really believed that he would out-grow the milk allergy by age 5. Because 95% of kids do. But it just seems so unlikely now. It’s gotten so much worse and he clearly doesn’t follow the “most kids” rules. Maybe soy will eventually be fine. Maybe chickpeas. Maybe even eggs. At least that one is going in the right direction. Never peanuts. But milk. That’s the impossible one. That’s the one that breaks my heart. Not only because it’s SO dangerous for him, but because he can’t have all these yummy kid things that are served at every party and picnic and play-place. And milk and its products are in EVEYRTHING. I had a vegan once tell me that it wasn’t a big deal. I tried so hard to not beat them in rage. They CHOSE to not eat eggs and milk. And they didn’t also have to avoid most legumes including (but so not limited to) nuts, peanuts, soy, and chickpeas. There are so many legumes we just haven’t tried out of sheer terror. He did outgrow peas, but the rest of it just scares me.

Whoops. This post was supposed to be about de-coding allergies a little bit and it became more discouraged ramblings from a very tired allergy mom. And it got long.

our role as parents

This is a letter I want to write. It's geared to the people who say stupid things about sweet adorable people with allergies. Who think that their child's right to eat a Skippy sandwich overrides MY child's right to, you know, not die.

I had heard it said that when you become a mom, you become a mom to all the children in the world. And I never really got that, even when I became a mom. I mean, I wanted kids to be loved and cared for and healthy and stories of sick babies and neglected children and babies thrown in dumpsters made me terrible sad. Then I became Allergy Mom. And I suddenly got it. And here's what I got.

My child's health and safety and life is equal to YOUR child's life and health and safety. And that's equal to the kid's down the streets life. And that's as important as the random strange kid at school's life.

And my child's preferences and convenience is on par with your child's and every other kid's convenience.

And life is more important than convenience.

And it is MY job as a parent to ensure not only the safety and well-being of my child, but for all the kids I directly or indirectly come into contact with. Yup, that includes kids with health issues in grade 6 at the same school that my pre-schooler goes to. And if something that MY child does negatively impacted the health and well-being of that child who's name I don't even know, well then, as soon as it was brought to my attention I would do my best to change it. EVEN IF IT WAS A PAIN IN MY ASS. because your child's life is important to me. It's that simple.

So for all those mom's who seriously have an issue with not being able to bring peanut butter to school, or having to wash your hands when you come into the class room, or are annoyed because the teacher will ask your child to change their shirt if she shows up with breakfast on it, I really want you to just think. Step out of your self-centred, narrow-minded little world for just one second. Please. Imagine the pain and grief of rushing your child to the hospital repeatedly not knowing if they would survive because for some stupid reason their body decided that milk (or eggs, or nuts, or whatever) is poison. And then think how you would want YOUR child treated if they had some sort of issue. Would you want them segregated? Would you want them pointed and and griped about? Would you want other people to wish they would just go away so that their life was a bit more "convenient"? Just think. And then, you know, follow the golden rule. And get your head out of your arse and treat people with empathy and respect and care and concern.

That said- feel free to whine a bit at home. But NEVER EVER say in public or to an allergy parent or to anyone, really, that it's annoying. Because I guarantee you being allergy mom is MORE annoying.

And... for allergy parents with more than one child, we also live both sides. I am Allergy Mom and "mom of kids who can eat everything". And I have to find a way to balance Bravo's safety with Alpha's and Charlie's love of yogurt and milk and cheese and Eggo waffles and pizza. And you know what, it's possible. It requires safety precautions to be put in place and it require that you be diligent and careful. But if I can do it every. single. day., then you can do it for 6 hours in a day when your child shares an environment with mine.

Please, just think. And treat my child and all other allergy kids like the sweet wonderful little people that they are, not like an annoying thorn in your side. Please.

THE END.

thankful for canadian health care

I was going to mope on here today. I'm having a really hard time emotionally with Saturday's events. The emotional impact of them hit me yesterday and hit me hard. I was a wreck. It feels sometimes like I'm just waiting for Bravo to die. Maybe soon, maybe when he's 4, maybe when he's 8 or 15 or 37, but this could get him anytime anywhere. And I'm having a hard time with it.

But then I did some looking around the Internet. 6% of kids under 3 have anaphylactic food allergies. 6% is scary. That's a lot of kids. 3% of all Canadians have them. This is not rare to me and my family, even though sometimes it feels like it. And anaphylaxis is deadly when epinephrine has either been delayed, not given at all, or given in inadequate amounts. If you get that epi pen in quickly, and have a back up in case the reaction is still severe in 5-15 minutes and call an ambulance then chances are that the person will be fine. So we make sure that everyone in contact with Bravo knows about his allergies and knows what to do if he starts up with a reaction. Reactions happen. I can minimize the risk, but I can't control it. As much as I would like to put him in a plastic bubble and feed him plastic food and never let him or his food out of my sight, I can't do that. It wouldn't be good for me or for him or for anyone else involved. But I can prepare and still protect him. And eventually teach him to protect himself.

And I am thankful that we live in a time and place where there is epi pens. And 911 and ambulances and paramedics and medicine and hospitals and public health care. And I'm thankful that I don't need to worry about insurance companies and filing claims to get crazy hospital bills covered. I'm thankful that Bravo will not need to face being denied coverage because he's a "high risk" individual. I'm thankful for benefits that pay for ambulances ($380!!!) and for epi pens. I'm thankful that there are people that care about my boy and go out of their way to keep him safe. I am thankful there are people who are paid to help him when he's had a reaction. I am thankful for my little boy. And that he's still here with me. Because in another time or place he might not be.

So as much as being Allergy Mom really sucks some days, it's not necessarily a  death sentence for him. And I know that other families face much harder struggles on a daily basis.

I am thankful that when he eats something and gets very sick and it could be deathly if not treated that he's back to being normal old Bravo 8 hours later. Allergies are strange.

And I'm thankful that there's a LOT of research going into allergies. And that there are smart people trying to fix them. And I'm hopeful that by the time my little Bravo has babies that maybe, just maybe, he won't have to be on the parent end of this and and they will have found a cure for allergies.

amublances are not as fun as they look

They're scary. And hard to be in. And hard to watch your baby fighting for his life in. They're not set up for small children. They have to try to use an adult blood pressure cuff until the fire man first responder guy gets there and has actual paediatric sized equipment and knowledge.

So the beginning. Well, not quite the beginning. The beginning happened when he was 4 months old. But the beginning of THIS story (oh please let there not be many more stories after this) starts with our Saturday Christmas celebration. Matthews parents are snow birds, so we have Christmas in November every year. That was Saturday. As usual for Christmas supper we had lasagna (strange, yes, but also delicious.) and there was Cesar salad and garlic bread smothered in butter and all sorts of other wonderful treats that pose a big big threat to my little man's life. Matt's mom had made Bravo his own pasta dish, but I guess there was just too much around. Matt and I were being careful and cautious, but not everybody else there necessarily realised just how serious Bravo's allergies are. That horrible September day was over 2 years ago and Matt and I are really the only ones who have the memories of that burned in our heads.

Anyways. Bravo was eating a bit and then going to play and came back to the table to nibble and then he came and sat on my lap and had a little bit to eat. Then he threw up. And not just a little bit. It kept coming. More and more and more. My pants were soaked. My shirt was soaked. I could have rung them out. The chair pad was soaked, the floor was a giant puddle, some of the projectile vomit landed in a drinking glass and filled it half way. My plate was full, the table was covered. I thought there was a lot of vomit when he was 4 months. Nope. THIS was a lot of vomit. Right away my mind went to "what did you eat??". I asked if he wanted a bath, he whimpered yes. We got him in the tub (and Matt dug out the Christmas pyjamas I had just received so that I could be less vomit-covered) and then the hives started. All down his chest and back and face and arms. I went to call health links. I think I got about 2 sentences out with her when Matt and Bravo came into the room and Matt was trying to tell me that Bravo was wheezing. All I noticed was Bravos face was swelling. So I hung up on health links, told my mother in law to call 911 and I got the epi pen out. Nobody prepares you for that. For holding your shaking scared baby in your lap while you stick them with a needle. I had been taught how to use them, but my mind went blank. Matthew reminded me what to do and I did it. He screamed. About a million years later the ambulance finally showed up (they say it was 9-11 minutes, but I don't think I believe them. Do you know how LONG 9 -11 minutes is???) and we met them outside and got Bravo in. He looped back into anaphalctic shock and they gave him more epinephrine. And then a lot of Ventolin and oxygen to force his airways open. And then we rushed to the hospital and went into the same horrible room as last time. Matt and I were terrified, not just of what was happening currently, but of all the memories flooding back of that horrible night 2 years ago. Thankfully there wasn't the flurry of activity that had previously happened in the resuscitation room. They were just making sure he was stabilized before we went to the observation room for the next 6 hours.

The next 6 hours were long, but not as long as that last hour had been. Bravo went crazy from a combination of too many drugs and up way way way too late. he didn't go to sleep until 2 in the morning when we got home. He was climbing the walls in the hospital room and the only 5 minutes he sat still was when a kind nurse gave him a Popsicle to encourage small sips of liquid.

The ambulance still shocks me. I'm glad they were there. I'm so very thankful we live in a time and place where there is epi-pens and ambulances and paramedics and Ventolin and needles and IVs. Or I would not have my beautiful Bravo with me. But seriously. They had the heart tracing machine that they said only works 50% of the time. Fantastic. They had 1 (ONE!!!) paediatric IV starter. So they had to make sure they didn't mess it up or they couldn't have given him his much needed IV. The first two paramedics had no clue what to do with a 2 year old. It wasn't until a fire first responder got there with specalized training in small kids that they were able to really help him. Why do they not have paediatric equipment on each and every ambulance??? And I tell you, I thought that 2 year olds were big. Nope. When you see a tiny 2 year old strapped to an ambulance bed meant for adults with his eyes rolling back into his head while getting another shot of epinephrine you realize just how tiny a 2 year old really is. I sang to him and held his hand. He was a trooper. He even didn't fight the mask because I told him it made him sound like Darth Vader.

I'm still struggling to process these events, but that's what happened. Merry Christmas.

Bravo's allergies

I'm both excited and terrified to have Charlie's and Bravo's allergy appointments coming up in a month. I'm excited because I'll get to find out if Bravos allergies are decreasing even a little bit. I KNOW he hasn't outgrown them, but to just see the numbers on the RAST test go down would be a huge joy. I'm terrified of that not happening though. And I'm nervous as... I don't know as what, but I'm super nervous about Charlie's testing. I've been a crazy paranoid crazy person with worrying about him having allergies so he hasn't had a single bite of anything Bravo is allergic to. Not because I think that's a GOOD thing to do, but because a)allergy people have no idea what the best response is to avoid allergies in a child with a strong family history and b)I'm NOT learning the hard way again. The hard way sucked.

Which leads me to this post. The long over due post about how we discovered Bravos allergies. A lot of you know most or parts of the story. But I've never really gotten into all the details. Because it's hard to write out, it's hard to talk about or think about. That day was a bad one. And when I think about it I remember just how close we were to losing him and then my head spins and I feel like I'm going to throw up. I can't help but think of the "what ifs". What if we hadn't gotten there in time, what if we were that 5 minutes later, what if they couldn't get the IV in, what if there was a super long wait at triage like there normally is, what if he didn't make it- our lives would be so much worse.

So.
Allergies.
Bravo was a rough nurser. Well, lets be honest. Bravo was a rough baby. It took FOREVER for him to learn how to latch like a normal child. I think it was 12 weeks before he latched properly and stayed there. It was pretty bad. But he had finally started to latch and nurse properly. And then my supply started to decline. and then it entered a full crash. And he was hungry and screaming and freaking out. And I was out of pumped milk to give him in a bottle. He INSISTED in having a bottle before bed. So I gave him some formula, just normal enfamil. And he got gassy and miserable. He happened to have a doctors appointment so I mentioned it to her and she gave me a can of soy formula and said some babies just don't tolerate normal formula.
So that night he had 2 ounces of it. And he threw up and threw up and threw up. I thought it was odd. He had some pink in his diaper. I thought that was odd. The next day I took him to the children's ER and they said it was "just a common stomach bug" They seemed annoyed that I was there. I questioned them, saying that he had never had soy formula before and asked if it could have been that. They said no, it was a stomach bug. So we went home.

It took a few days for his appetite to return. He had massive soupy poops for the next few days. I had lots of time to build up my stash of pumped milk. But my supply was still crashing so it didn't last long. September 23rd 2009, 10 days after I gave him the bottle of soy formula I went grocery shopping while Matt fed Bravo his nightly bottle and put him to bed. I was out of pumped milk and had already nursed him and he then had a 9 ounce bottle of soy formula. While I was at the store Matthew called. Bravo was REALLY throwing up. It was about 8:30. I paid and booked it home. By 9:00 the boy had thrown up all over me, his dad, his room, the walls, the floor, his bed, the couch, every possible surface was covered in endless amounts of vomit. And he was still throwing up. We called Matt parents and asked them to come over to watch Alpha while we took Bravo in. We were bracing ourselves for a long night of waiting for 6 hours before being told it was a stomach bug and to go home. But He was just throwing up SO much I wanted to take him in. Matt's parents got to our house and Bravo had finally stopped throwing up. But he wasn't looking so hot and was still dry heaving and coughing and looking odd. SO we went to the hospital. Thinking the whole way there that the trip was a waste of time, that we would be there waiting forever. We got into triage and thankfully the line wasn't too big. We put him in his bucket seat on the counter and the nurse looked at him for a bit and had a strange look on her face. That's when I REALLY looked at Bravo. He was turning kind of grey. He was lethargic. He was wide awake but no crying came out of him (which was odd- if that boy was awake, he was screaming). I asked the nurse how long the wait would be to see a doctor. She said "hmmmnow. They said it with urgency and told us to follow them. We did none of the normal triage paperwork. We went through the first set of double doors then we went through this huge set of double doors with RESUSCITATION written in huge letters across the doors. Oh. My heart sank. That word alone implied that life was in danger and needed to be saved, life needed to be brought back to the person quickly or they would die. Why on earth were we in that room??? I don't think I can describe the fog that was in my head at that point.

From this point on it went into a blur. I remember scenes, not the whole event. Like there are just snapshots in my head of it, not rolling movie.
They put Bravo on this bed. There were about 15 or more people in the room all trying to help my tiny baby. This tiny lifeless body on this huge table. He was 4.5 months old. They poked him and poked him and poked him, needle after needle,IV attempt after IV attempt. Matt and I kind of squished to the side and each had a finger on Bravo. Bravo was staring at us. I think I was singing to him. His eyes were lifeless, not a cry squeaked out of him despite all the poking. A doctor came in and said "you need to come with me NOW." More urgency in his voice. I told him that Matt was staying. If this was going to be Bravos last moments he wasn't leaving this world not being touched by a parent. Hooo. Now the tears are coming. The doctor wanted both of us but I refused. Bravo was NOT going to be alone. Daddy was staying.

The doctor took me to "that" room. The room with a million tiny boxes of Kleenex and couches and chairs. It was the room the doctor took you in to give you really bad news. The room the doctor tells you something is seriously wrong with your baby- or worse. Wow- do I not want to go into that room ever again. He asked me what was going on, what had happened. I described everything including the last ER visit. he said I was probably right about it being a soy allergy. Then he said it was a good thing we got there when we did. I asked if he meant that Bravo would have died. He simply said "It's a good thing you got here when you did and not 5 minutes later." 5 minutes later? That's being stuck at 1 train or a couple more lights or not finding a parking spot or talking with my in-laws a bit longer or... 5 minutes is not a lot of time. I got back to the room and they had stabilized Bravos heart and he was breathing better but on oxygen. They had finally got 3 IVs in him. He was still not good, but he was out of immediate danger. They were going to admit him but a room wasn't ready. Another family was coming into resuscitation though and they didn't want us to see that so they were getting one of the private ER rooms ready for us until we could be admitted. I left the room because I had to go to the bathroom and I walked out back into the ER waiting room full of kids and I started to lose it. Tears started streaming down my face, hiccup sobs started coming out of my mouth and I had zero control over it. I had been OK up to this point, but now I was losing it. I walked to one of the bathrooms and some guy was about to go in it. He took one look at me and held the door and said "go ahead". I went in and I sobbed. And then I got it together and washed my face and went back to Matt and Bravo. We were just about to be transferred to the other ER room. We got in and Bravo made a little face- like a tiny pushing face. I checked his diaper and it was full, and I do mean FULL of pink runny stool. He was pooing blood. I showed the nurse and there was another flurry of activity. We were sent to ex ray to check out... something. I don't even know what. And then I was told I was not allowed to nurse him. That his insides needed a break. His intestines were bleeding from all of the poison in his belly. Then Bravo cried. You know that first cry a newborn makes where you're just so relieved to hear the baby make a noise, any noise? It was reliefe like that times... a lot. He was so tired and needed to sleep and I knew that I could get him to sleep in seconds if I could just nurse him. Or put him in his sling- but he was a mess of wires and tube so I couldn't do that, either. My heart ached, my breasts ached, I wanted nothing more than to comfort him the way he wanted. But I couldn't. We finally got admitted. I stayed with him in the hospital never leaving for 3 days. He wasn't allowed to leave until he would eat the super gross formula, nutramigen. Man, that stuff is nasty! And he need to stop pooing blood and not be dehydrated. I missed Alpha's second birthday on the 25th. I cried when there was the little girl just down the hall and her parents never once visited her. She sat in the swing by the nurses station for most of the day. Bravo and I went over and sat with her and talked with her often. I couldn't imagine leaving a 4 month old baby there and not visiting. It broke my heart.

We finally came home and eventually got allergy teasing and he is allergic to soy (surprise surprise), milk protein, peas, peanuts, and egg. He has since outgrown peas (wahoo!) and has also since had anaphalactic reactions to small amounts of milk. It's been a roller coaster and full of ups and downs, but that day will never be out of my head.

Sometimes Bravo will be having a really funny and sweet day. One of the days that really melts your heart. And those are the days that it hits me more. Bravo was having a day like that on Saturday and Matt's eyes welled up with tears and all he could say was "I'm so glad he's here". I don't think we as parents will get over that horrible horrible day. It will always be there that we were this close to missing out on everything he's doing. On everything that he is. The world would be a worse place without him. My world would be a worse place without him. Milk, I could do without. Bravo, not so much.

So that's the beginning of that story.

changed-worry

I've been thinking about this question a lot lately: How has being a parent changed you?

There's the obvious answers. Change in priorities, limited ability to get out without small people hanging off of you and crying for juice boxes, sleep deprivation, relationship changes, friendship changes, etc etc etc. And all that is true. But I think the biggest change for me is the worry.

Everybody worries. I did before I was a parent. Will I have enough money? Will my living accommodations work out? Will my job be stable? What will happen if I need to leave my job? Is my relationship going to make it? Funny how those things seemed big to me then. And now I yearn for the days when those were my worries. I still worry about many of the things on that list, but those are some small potatoes.

And most of my new worries are also still probably small potatoes in the grand scheme of things. But to me they are huge. And some are all consuming.

When I found out I was pregnant the beginning of the "will I be a good mom?" started. And it's never ended. I question constantly if I am doing right by my children. I worry I am scarring them if I lose my cool. I worry I am teaching them bad habits. I worry I don't hug them enough, have the right blanace of help/ independance, or spend enough 1-on-1 time with each child.

I worry about when Alpha goes to kindergarten. Will the other kids like him? Will he find friends? Will he be invited to birthday parties? Will the teachers like him? Will he be able to sit still long enough to do anything? Will he be behind?

When Bravo almost died at 4 months and 2 weeks old my life changed. I was now Allergy Mom. Watching your baby on a table, grey and lifeless, having 15 people try to stabilize his heart, putting breathing tubes in his throat, put IV after IV after IV into him, strapping monitors onto him and yelling at you trying to figure out what is happening to this incredibly small person while the whole time that small person stares at you unable to cry, unable to do anything but stare, that changes a person. Being Bravo's mom has introduced a whole new level of worry to my life. I am terrified of the day he goes to school. When I can't keep him in his allergy-free bubble. I am terrified of others being in contact with his food. I am terrified of other kids and other parents. What if the really friendly child shares a goldfish cracker. Bravo knows to not eat it, but what if the friendly kid then touches Bravos juice straw. What then? Will there be a teacher on the play ground that knows that when he starts throwing up there is only a matter of a minute or two to get that epi pen into him? The worry that holds my gut about my sweet boy is immense.

When I was pregnant with Charlie yet another set of worries was born. Would my baby make it? Would he live past a couple of hours old? And if he did will he always know some where deep inside that his twin is missing? Does he not sleep because he's lonely?

Will my boys get along? Will they look after each other? Will Matthew and I be around to watch our kids grow up? What if something happens to us? Or to one of the kids? What if schizophrenia rears it's ugly head and chooses one of my sweet boys like it did to my brother, 2 cousins (male), an uncle, and a grandfather? What will I do then?

If I let the worry run wild I would not be able to get out of bed in the morning. Some days it's all I can do to keep the worry at bay. And those days I hug my kids a little harder, tell them I love them a little more, and check on them one extra time while they lay sweetly sleeping.

And I know that this worry will never leave. It may shift and change as the boys grow into their own and become young men in charge of their own lives and (hopefully) some allergies are outgrown, but the worry will always be there. When I peed on that stick in January 2007 my life was changed. And even to erase all the worry in the world I would not change it back. Not even for one second.

Thankful- for other moms who know they don't get it.

There are some moms who make me want to scream. Or run the other direction. Or throat punch them. Or seclude myself in my house and never ever leave just so I don't run into them or anyone like them ever again.

But then there are the other moms. The good other moms. Sometimes I click with them, sometimes I don't. But there are some moms who I am thankful for. With Bravo's allergies going into any public space is terrifying. And some moms make it worse.


Yesterday a mom at play group brought me to tears. Good tears. The "there is good in this world and I can't believe how kind you are" tears.
I always pack a separate snack for Bravo even though snack is provided. Yesterday the mom in charge of snack (I had only met her once before and we don't really get along) came up to me and clarified Bravos allergies and then pulled out of her pocket the label from the bread she used and she had brought a box of crackers she had seen me feed him from before just in case. She also packaged everything separately (fruit away from cheese and vegetables) and told me she used a clean knife and a sterilized cutting board for the fruit and it did not come in contact with any other product in her house.

I was floored. Her children do not have allergies, she knows no kids with severe food allergies, but she made sure Bravo was included and safe. She know she has no idea the fear of your child accidentally getting a trace of cheese on their fruit and then having a life threatening reaction. She knows she has no idea how hard and stressful it is to keep him safe. And she knows that despite all of my diligence and my preparing Bravo (don't EVER eat anything unless me or Daddy  say you can) that all of the adults involved have a responsibility to keep all kids safe, even those with allergies.

And for the moms that "get it" and for the moms who have never had to live this and know they don't "get it" but do their very very best to keep my sweet baby safe I am so very thankful. It's kindness like this that makes being Allergy Mom a little bit easier. And reminds me that it's OK to leave my house and It's OK to send Bravo into the world. Even if it does contain far too much cheese for my liking.