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!

28 Weeks Pregnant

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How far along?  28 weeks. THIRD TRIMESTER! Woohoo! …andddddd I’m over it!

Size of baby: The size of a head of broccoli.

Weight: Not really sure, I haven’t found a doctors office here yet. I had an anxiety attack/mental breakdown because I cannot find one that will take me. I’m too far along and they mostly aren’t accepting new transfer patients. How does that even work? I mean, how is that even OKAY? So what am I supposed to do? Go to the random ER when I’m in labor and “hope” someone is there to deliver my baby. I’m a nurse, screw it, I’ll deliver my own damn baby. I hate HATE hate doctors! I LOVE my doctor in Sugarland that delivered Josie, however, she is about almost 2 hours away and I can’t be going there weekly then when I’m in labor. It’s too far from home when you have a toddler to care for as well.

Stretch marks: Not yet. I had the Linea Nigra with Josie but nothing yet with this one. I do notice a tiny bit of dark spots on my face that seem to get worse with sun exposure. I just steer clear of this horrible heat and I’m good.

Gender: GIRL!

Nursery: We moved into our new home last week, so things are still very, very  busy and crazy around here. I can’t wait to finally get it all together and share what her nursery will look like. It honestly may not even be done until after she welcomes us. There is just too much to do in a brand new house when you move.

Maternity clothes: I did go check out the Home Goods/Marshalls close to us. It was huge, busy and a complete disaster. I swear the store looked like it was going out of business. But luckily I found my favorite cheap tanks there still in a bunch of new colors they didn’t have in Florida. Win!

Sleep: Okay, completely OVER the air mattress. Our moving truck was delivered (thank GOD-but with things a little shifted and moved around in there), and our bed made it to our room. It may not be on the frame yet but I refused another night on that air mattress so Bobby set up the bed on the floor for me. It was a better night sleep but Juliette kicks so so hard and so often (I swear she doesn’t sleep, uh oh.) that it keeps me up. My legs have become restless and I feel like I’m going through a growth spurt this week because of the pain in my abdomen.

Best moment the week: Our moving truck showed up safe and we are busy unpacking. We had three men help move things inside and it took 3 hours! That is excellent compared to previous moves. They were awesome!

Food cravings: Salad but haven’t had the time to make one.

Food aversions:  Anything I ate in the beginning of the pregnancy.

Symptoms: Heartburn that comes and goes depending on how much I eat and when, I haven’t had much round ligament pain this week and the contractions have backed off and only seem to bother me when I have a full bladder. I feel huge, heavy and like I’m having a growth spurt. My legs have become restless and I started having swelling and pain in my feet (probably from moving and unpacking so much).

Mood: Happy and overwhelmed with all the “to do’s”.

Movement: Big kicks all the time. I feel like she’s going to push herself out of my belly button.

What I’m looking forward to: My mom’s visit next week!

What I miss: My body and being able to go go go non stop until bed. I just can’t anymore. My entire body aches.

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How cute is she?

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28 Weeks

27 Weeks Pregnant

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How far along?  27 weeks.

Size of baby: The size of a cucumber.

Weight: Not really sure, my doctors office (Woman’s Care in Florida), refuses to see me anymore. They are absolutely the worst set of doctors on the planet.

Stretch marks: Not yet.

Gender: GIRL!

Nursery: We moved into our new home this week, so things have been VERY busy around here. I do have a designated room for Juliette and even more so excited because we don’t have to pack up and move 6 months after she gets into her room. Because for the first 6 months she will be with me, in our room.

Maternity clothes: I pretty much grew out of everything that I fit in pre-pregnancy. I was really trying to save myself from spending anymore money on maternity clothes I will only wear for a little while longer. And my cheap maternity tanks that I bought form Marshalls were ruined by me washing and drying them. I’ll buy more next week…

Sleep: I honestly have been sleeping pretty good lately. The reflux has significantly slowed down. But yet sleeping on an air mattress while we wait for our moving truck to show up, has not been easy. I have a hard time moving around in bed from side to side and feel so heavy.

Best moment the week: WE MOVED INTO OUR HOME! (Thank you God for getting us here safely to Texas). I am in LOVE!

Food cravings: BBQ chicken pizza, cherry cordial ice cream…chocolate (a little bit).

Food aversions:  Anything I ate in the beginning of the pregnancy.

Symptoms: Heartburn that comes and goes depending on how much I eat and when, I haven’t had much round ligament pain this week and the contractions have backed off and only seem to bother me when I have a full bladder. You can only imagine how many times we stopped to pee while driving from Florida to Texas. Oh and my face is completely back to normal. Not much acne this pregnancy, surprisingly.

Mood: So happy!

Movement: Big kicks all the time. I honestly do not remember Josie kicking me so hard and so much. She really hurts me sometimes and a lot of times I wish she’d stop moving so much because it’s painful.

What I’m looking forward to: Unpacking, getting settled and our moving truck showing up safe. And my mom and brother coming to visit and help July 15th.

What I miss: My mom.

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27 Weeks