Food Allergies Suck!

I guess I should say allergies SUCK! And so does asthma!

So I know I haven’t said much about what has happened to our sweet Josie on this blog (in the past). I have promised an update or story but never really did it. It was too hard for me to travel back down that road and re-live the events that occurred. It was emotional and terrifying. But most recently (a few days ago), we had her retested and this was my update:

At 9 months old she had an allergic reaction to diary and eggs. And days away from her 2nd birthday, she had an anaphylactic reaction to dates and cashews (tree nuts). I almost lost her that day (I’ll always and forever be grateful for the love and friendship of Shantel Brock-you are an Angel). While her lifeless body lay in the hospital bed and her lips blue and her lungs trying to pull in all the air they could, I lost myself that day. Since that moment, I’ve never been the same. I’m scared at every given moment. No one TRULY understands. It’s painful. Not only does she suffer, but I do too. I always try to get out with other moms to get Josie to play with others but most people don’t know that I suffer in silence. I worry. My anxiety has turned into panic attacks. I make myself sick. I worry about too many kids with too many food items and not being able to watch her every move. It’s literally drove me insane. To the point where now I am seeking help to be the best mother to her. Because that’s all I want. I want to be normal, too. I try to stay strong for her. It’s hard. And no one can tell me anything that will make me feel better. Only a parent of a child with allergies can explain or relate to the never-ending fear that lives inside. The nightmares. The “what ifs” that seems totally ridiculous (to most people). Well, my little girl got blood tested after her near death experience and PICU at children’s hospital (over a year ago). And the results were shocking. Almost unbelievable. And here we are, more than a year later with high hopes that maybe, just maybe something has gotten better. Maybe something she was able to out grow. I finally found her a fantastic allergist. Who sat with me today for 4 hours ya’ll! 4 HOURS!!!! Why? Well, here’s the story: I made the appointment because my sweet girl starts school in August (Pre-K). And also because I’m tired of harboring her from play dates. I make up excuses but never want to blame it on her allergies. Really, it’s my worry (is what I keep telling myself). I just want her to get out more! The allergist and I sat there and talked about blood vs. skin testing. Skin testing is much more able to tell you the truth rather then false positives. Her blood work could have very well had some false positives. The doctor and I were positive and sure that that was the case. She asked me if I wanted the “tree nuts mix” or each separate nut tested on her skin. I asked for each separate. We tested, dairy, egg, tree nuts (all), peanut and chicken via skin test. Prior to this we were both so excited that she may be able to try COOKED dairy and egg (it changes the protein), and she may eventually out grow this. Skin test usually take about 20 minutes to react. Josie’s took 20 SECONDS! Yup…you read that right! 20 seconds! My poor girl came back positive then ever to all the allergens that she once tested positive to. Only this time it was actually worse. The doctor lost hope at that point. Her face said a thousand words. Her voice changed. She seemed truly concerned. I asked if we had to go to the ER? Was it THAT bad? She said it was pretty bad but we would keep an eye on her, give her benadryl and all that we spoke of earlier was out the window. No cooked dairy or egg. No trials. No reintroducing foods. She even mentioned that the likihood of her outgrowing this is not likely and won’t be tested again until she’s 5 years old. My heart sank. I can’t help but feel immense guilt. What did I do to her? Why? What happened? I made her, why can’t I fix her? I tried to keep my composure so Josie wouldn’t read my emotions and get even more scared. The doctor knew it was happening…I lost it. If I could do ONE thing in this world it would be to take THIS away from her and give it to myself. I’d do anything to make this go away. So the entire point of this post? Well, because some people don’t take Josie’s allergies seriously. THIS FOOD IS POSION FOR HER! It’s immediate and it’s DEADLY! IT IS POSION! IT CAN AND WILL KILL HER! And I hate when people say “oh just a little tiny bit won’t hurt.” Or they let their kid sip on my kids cup (well, your kid just ate a cookie that contains eggs/dairy, whatever else). People don’t realize the seriousness of contamination. Did you know that when I almost lost her more then a year ago, she ate a teeny, tiny bite of a Lara Bar (dates and cashews)? Tenny tiny! That’s all it took. Seconds went by and BAM…ambulance, ER, PICU and almost intubation. FAMILY, FRIENDS: PLEASE, PLEASE, PLEASE take this serious. I can’t bear the thought of anything happening to my baby as long as I’m living on this Earth. I NEED you to understand the seriousness! I NEED you to respect my wishes. Understand why I clean like I have OCD! Because there ARE allergens in our home. THIS is why I have a hard time getting out. THIS is why I have a hard time meeting other moms and getting my child to play with others. She’s a great kid! She’s super sweet and smart and LOVES to play with other kids. I just don’t want to be the mom that looks like I’m crazy, or hovering or nuts. The PTSD from almost losing her was and has been hard on me. The nightmares still happen. It could be why my panic attacks are at night, randomly. I wake up crying some nights re-living that event. The images just don’t go away. So although I’d LOVE to meet up and have my kid play with a ton of other kids. I just can’t because of me. I’m grateful to the friends and family who understand. Who truly know that one teeny tiny bite can kill her. Who respect my “craziness” and know I’m not insane. I love my daughter. And without her, there’s no me. Everything I do and don’t do is for her (them). Below are the pictures from today. They are heartbreaking. They are scary. They are what they are. My girl is happy and healthy. What she eats, is all she knows. She doesn’t eat junk. She’s doesn’t live off fast food, she just eats to live…she doesn’t live to eat. We live in a society where eating is all part of socializing. So with me having celiac disease and Josie’s food allergies, we don’t get out much. And it’s sorta depressing at times. It’s a lot of work to leave the house to go somewhere. I always worry about what she will eat…what I will eat…it really IS exhausting. So this is the truth ya’ll. THIS is why I am who I am. Josie NEEDS a mom like me who is hypervigiliant. I am her mother and her advocate. Please understand…my daughters life is priceless to me.

***The top left is PEANUT. The bottom left is CASHEW (what she had a reaction to in the Lara Bar a year ago). To the right is Chicken, Egg and Milk (top to bottom).

After thinking about this for the past several days/nights, I’ve determined that I’m not stopping here. We are going to see another allergist next Thursday. I want more done. More testing. Most opinions. I can’t stop and won’t stop at “well, we will re-test her again when she is 5-years-old.” At first that was okay. But the more I think about it…no! I am not done! What can we do?! There has to be more! I want blood work done. I want it all. I want her asthma reassessed. People seem scared to touch her. Tell me what to do-I’ll do it!

Josie: Things I Don’t Want to Forget

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It’s hard to remember but I wanted to get this blog post published because the pictures are just so adorable.

Just a few things:

“Why? Cuz!”

“Mere Momma, Mere!” -as you ask me to sit down next to you.

“Daddy UP!” -as you’re asking to be picked up.

When you’re on the potty and you ask “iPad on the knees” “Toys on the knees” for your toys to be put on your knees while you finish your business.

You’re potty trained! And now you even go out in public and use the big potty there when I hold you up! I am so proud of you! Now, we just have to find an overnight solution. You do awesome at nap with no wet diapers. You are so smart, my sweet girl. I love watching you grow but I miss my sweet little baby Josie. You were the BEST baby.

Josie: Things I Don’t Want to Forget

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Oh my dear Josie! Here we are, the four of us now. We brought your little sister home and you’ve been so completely in love since. You’ve accepted her whole heartedly. You love her dearly. You kiss her. You hug her. You talk to her. And we couldn’t be more proud. With so much fear leading up to your sisters birth, of how you’d react, you’ve certainly blown us away with your gentleness. And your ability not to regress (too much) and understand when baby needs mommy.

You’re growing so fast. I know I say this every time I post one of these but we moved into our first brand new home in July and when I look back at those photos of us sleeping on an air mattress, you look so little. You had a baby face. Baby cheeks. You’ve grown so much since then. Your bathing suits don’t even fit you anymore. Your legs are longer. Your voice is louder. Your vocabulary is exploding. You are simply beautiful. You are incredibly intelligent. Much more advanced than the typical two-year-old. You catch on to everything we say. We talk to you like a child and not a baby. We teach you words and kindness daily. You certainly surprise us each day with how much you know and learn from the day before. I cannot wait to watch you spread your wings and be more independent. I can’t wait to watch and see what you may do or the wonderful things you may accomplish. You are such a beautiful girl, Josie. I am so proud to be your mommy.

We’ve just started looking for day programs for you sweet girl. You are ready. Mommy is ready. It’s time for you to get out and explore the world a little bit more.

Rather than a Mother’s Day Out Program where kids typically play, paint, color and bite each other (haha), we’ve ultimately decided to put her in “school”. A program where she can use her skills that she’s developed and her knowledge that’s ever so growing. This kid is unique-I tell you. She is a sponge of knowledge. She is incredibly smart and has so much potential. It is time for her to go out there and shine and soak up all the more knowledge she can so she’s more than ready for Preschool and Kindergarten. I can’t wait to watch her come home and tell me all about her day.

So sweet girl, with all of the to-do’s and the busy day to day tasks, we never want to forget the simple things. The things that make us laugh. The things you do to make us cry. You are truly so so special. And I want you to know that we cherish each season with you and hope that we can give you the love you need to feel as though you can do or accomplish anything.

We never want to forget:

How you ask for chips: “pits”…you love, love, love chips!

Come here daddy, come here…”mere daddy, mere”.

“Daddy up up up”.

“Daddy pour!” (move out of the way…push).

“Daddy play” (takes his hand into the playroom).

Up the stairs…”up de stairs”.

“More sauce”…apple sauce. (Do you want some apple sauce, Josie? “Yes! Yes, I do!”

“No bunnies” (looks out the window).

Counts from 1-20 with no hesitation.

“I love you too, mommy”.

When I tell you that you are so beautiful: “You are so beautiful, Josie.” “Thank you, mommy.”

How you say “isssss hot!” when I give you your food, put you in the car seat or we walk outside.

How you say “grapes” (geeps).

How you say “coconut” (do-dung).

How you say “water” “Wah! Wah! Wah!”

How you LOVE ice water “EYE water!” “Daddy help me?” (you love taking the ice cubes out and eating the small pieces).

How when you’re mad you throw whatever is in your hand at the moment.

How you just started walking backwards at 26 months old.

How you say blankie “bickee”.

How you say “Mmmm, essss good” (it’s good).

How when I look hurt you run to my arm and say “awwww, sorry momma, awwwwww. I sorry”.

How you say “birdie” (burrrrrrdeeee).

When you hug mommy “awwwww, mommy”.

How you recently started saying “bye bye momma, I wove you” (2 1/2 years old).

How you run to me when you hear me come in the door and hug my leg and say “I’m back”, “you’re back!”.

“Kitty! NO!”

“Good morning baby sister, good morning sweetheart. Aww you’re cute!”.

“Good night baby sister, goodnight. I wove you! Sweet dreams!”

How you say “moe-ma” (Grandma) to daddy’s mom.

How you call mommy’s mom “Granny”.

How when we FaceTime Granny and you always ask to see “kitty.”

How you say “BITER” when there is a spider or a bug or a fuzzy on the ground.

I laugh and I cry when I type these things out. Because it’s truly amazing to see how far you’ve already come. And I can only imagine how much better it’s going to be. You are my first baby, Josie. My love for you runs deeper than I can even put into words. So deep that it almost hurts. So deep that I cry just thinking about it. You are my world, sweet girl. I am so proud of you. So proud to be your mommy. So grateful, thankful and blessed.