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!

Juliette: 4 Months Old

dsc_5061

You’re an amazing sleeper! You now sleep 12 hours or more a night! You go to bed when Josie does (7pm) and you sleep the entire night.

We finally have you transitioned to your crib. You always sleep better when daddy is home. I know we all feel a little bit better and sleep a little more sound when he’s home. I know we all feel safer.

You love to talk. You’re trying to express yourself. Sometimes on your own but mostly when we start talking to you, you always talk back.

You still cry a lot. Cry when we walk away from you. You always want to be held but sometimes you don’t want to be held and just cry because you’re so tired.

You don’t nap much like your sister did. You maybe nap for about an hour in the morning after you eat and then in late afternoon for about 15-20 minutes. Otherwise, you’re up most of the day.

You love it when Josie is close to you. You smile at her and start talking. I can’t wait for you two to play together one day.

You’re officially in size 2 diapers and still in 3 month onesies. I’m really bad at dressing you up cute with headbands like I did with your sister. I seem to never have the time. You both keep me busy.

The healing has been different with you compared to Josie. I’m losing weight so much faster and I am now down to 115lbs. I’m hoping to hang on to that and not lose more. But I know that won’t happen. Having celiac disease is tough.

We tried to give you a pacifier to calm you in the times when you’re restless and not able to be soothed by being held or drinking a bottle. But you spit it right out just like Josie did.

You’re still drinking dairy based formula. Although, you have had spots of eczema pop up here and there. On your head, elbows, knees and feet. Even if you weren’t getting the dairy formula mixed with breast milk, you’d still get breast milk and that has dairy in it because I still eat dairy. I do not plan on stopping either, because it’s about the only thing I can eat.

You LOVE the relaxing smell of Gentle Baby Essential Oil and Tranquil. I rub it on your blanket in your crib and put it next to your face. I know it helps you sleep. You are a good sleeper. You two girls both LOVE your sleep (for now).

You’re becoming easier to take out of the house. You would scream and scream while in the car seat but lately it’s been easier.

I got a “mom van” and we are selling our Honda Pilot because there is so much more room in the van and it is much easier for me to put you both in and take you out of. I’m so short so having an high SUV is very difficult for me. Not to mention, Josie kicking the seat with her feet. And the best part: half the car payment! That’s a bonus for sure.

You love playing under your play gym. And you’re doing better with tummy time. You can hold your head up better but still get mad after about a minute.

It’s so hard to keep track of everything. My day is so full of tasks that sometimes I forget to eat. It’s not easy being non-stop every single day but it’s rewarding to be a mom to the best girls on Earth. I love to girls to pieces. No more breath holding spells yet and I hope it continues to stay that way.

dsc_5006 dsc_5066 dsc_5063 dsc_5046 dsc_5040 dsc_5036 dsc_5031 dsc_5028 dsc_5025 dsc_5023 dsc_5022 dsc_5021

Josie: Things I Don’t Want to Forget

dsc_4702 dsc_4703 dsc_4704 dsc_4705 dsc_4706 dsc_4708 dsc_4710 dsc_4712 dsc_4713 dsc_4715 dsc_4718 dsc_4721 dsc_4723 dsc_4725 dsc_4731 dsc_4734 dsc_4739 dsc_4740 dsc_4741 dsc_4745 dsc_4746 dsc_4748 dsc_4799 dsc_4801 dsc_4803 dsc_4693 dsc_4696 dsc_4699

dsc_5011 dsc_5015 dsc_5017

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.