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!

Food Allergies Suck!

image1 image2So this happened today guys. I was at work and had to rush home. I almost took her into our ER (again) but treated her at home with medications we had. Thank God for my patient and amazing friend (Josie’s babysitter). For staying calm, keeping me calm and staying to talk with me for a bit. I am grateful for you.

Food allergies are real! Allergens hide in everything. All she did was put a piece of chicken on her tray and her face started to swell. It started to move down her chest and then her nose started running and she was nasally. I was so worried about her airway. My worry never ends for this child. I worry about her 24/7. I barely sleep at night because I want to make sure she’s still breathing. How can I not when things like this happen? Everything she comes in contact with I worry about a reaction. I worry so much I’m seriously mentally exhausted. I am so so exhausted. 

So to those moms/dads out there who are frustrated with the food restrictions allowed/not allowed in schools…please know that it may be inconvenient for you, but my daughters life depends on it. And so do so many others. She has scared me one too many times. And I have been lucky that it wasn’t worse.

It is SO hard to get her to eat foods. Let alone to even FIND something that is safe for her to eat. She’s picky because she’s thrown up way too many times. She’s smart and doesn’t trust the food.

I’m thanking God today for allowing me to work so close to home. To be able to come home. To have the knowledge of how to treat her in this type of situation. But what I struggle with is staying calm. My mind goes everywhere. I feel like I can’t catch my breath. I’m on the verge of a panic attack. I literally saw my life flash before my eyes today as ran out of work as fast as I could. “That’s my baby girl” I kept thinking. “She is my world.” The airway is nothing to mess around with. And Josie had already spent last weekend in the ER from RSV/Bronchiolitis. Poor thing. I wish I could take it all away.

This is probably the most difficult part of being Josie’s mom. Getting her the nutrition she needs and making sure it’s safe. I never stop worrying. Never.

As most of my friends and family know from the past that Josie has egg and dairy allergies. It seems to be a lot more than this now. Hopefully future testing can tell.

Has anyone ever heard of someone being allergic to chicken if they are allergic to eggs? Would that makes sense? I just don’t know. Any thoughts? Suggestions?

By the way…she’s doing better now. But here I am sitting up, mind racing and worried about her. I have already checked on her 3 times in her crib. Dear God…give me the strength.

10 Months Old

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Happy 10 months my little love!

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Oh, those eyelashes!DSC_9190

And those eyes! We can’t tell if they’re turning colors. Some days they seem more greenish. Some days they look super blue! Some days they have a ring of brown around the pupil. Either way, they’re beautiful. DSC_9189

Her hair is growing! And turning blonde more and more each day.DSC_9188

Her eyes look brown, right?DSC_9177

So fussy. Teething like crazy baby.DSC_9175 DSC_9174

Look at those teeth!DSC_9172

A strange and different day for this girl…she was chewing on everything in sight. Wanted mommy and nothing but mommy and cried every time I walked away. Drool for days. And chapped little face from the cold. Poor baby.DSC_9171 DSC_9163 DSC_9161 DSC_9160 DSC_9155 DSC_9153

Those four big boys are coming in and they’re coming in strong!DSC_9152

Oh Josie, mommy wants those boogies! (I irritate her when I try to clear them out of her nose for her, haha)DSC_9150

She’s grinding her teeth. I’ve read it could be stress related or just something they like the sound of. Gosh, I hope my little girl isn’t stressed. Geez, she has no idea of what “real” stress is all about. Stay young little one…I promise, you’ll never want to grow up. It’s overrated. DSC_9149 DSC_9148 DSC_9144 DSC_9141 DSC_9139 DSC_9136 DSC_9133 DSC_9132

What a peach!DSC_9131 DSC_9126

I love her natural highlights. She’s just so beautiful. DSC_9125

I spy a baby!DSC_9124 DSC_9122

Those cheeks!DSC_9104

Those eyelashes!DSC_9089 DSC_9106 DSC_9090 DSC_9108 DSC_9092 DSC_9110 DSC_9095 DSC_9112

“But Mommy! I wanted to crawl off the chair!” (“luckily you caught me in time before I fell face first”) – the look of being scared/post almost falling off the chair. “Good catch, mommy!”DSC_9101 DSC_9103

Beautiful!DSC_9120 DSC_9088 DSC_9076 DSC_9075

Why so serious?

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Let talk changes.

Oh the changes since last month. It’s as if she decided “oh, I’m just going to make you worry just a little bit about me, then next week, I’ll do exactly what you thought I was never going to do.”

Crawling…clapping, dancing, singing, talking, on.the.go!

Okay, so she’s not on all fours (yet). And she’s not exactly a very curious baby. BUT, she IS scooting around army style now. I think she may be one of those who skips the crawling (on all fours) and goes straight to walking. If she wants something from across the room, oh boy, she’ll go get it. Nothing is stopping her. And she moves fast. It only took two days for her to get this move down. She just needs a little green army suit and she’ll be all set. I have a big blanket on the floor in the living room and I don’t know if she just doesn’t like to feel the carpet but she rarely moves off the blanket to venture out to other areas of the room. Which is good because I don’t have to worry (yet) of her traveling out of view, but at the same time, I’d like her to venture out to explore. So I’ve been putting her toys all over the room to see if she may try. Maybe once or twice she’s moved off the blanket.

She started clapping only after two days of showing her how. Now she claps at everything. If I sing, she claps. If music comes on, she claps. If she is in the middle of doing something, anything, she stops and claps. So funny! Grannie taught her patty cake. She claps, rolls and pulls (sometimes) and loves every minute of it. She especially loves peek-a-boo when I pop behind the couch and scare her. Or put a blanket over my face and hide. She’ll pull it down to “find me”.

She loves Kitty. She gets to excited when Kitty comes around (which is more now that Josie is turning into a little person). She will touch her so nicely and gently and very rarely (with daddy, not me), pull Kitty’s hair. But Kitty is so sweet and she just takes it. I truly believe Kitty just loves Josie. She really wants to be a part of what is going on between daddy, mommy and Josie. And it’s just too sweet. As for Bitty (the gray cat), well, I don’t trust that cat as far as I can see her. She’s more scared of Josie than anything and rarely comes around.

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Josie loves the show Super Why! And I honestly don’t mind putting it on when she’s fussy or whatever because it’s a good learning show. Josie loves the ABC song. And I’ve started to sing it to her several times throughout the day. I sing it probably about 50 times a day. After a few weeks of doing this, Josie has started to move with the tone and hum and dance a little with me. It’s adorable! My goal is to get her singing her ABC’s as soon as she can talk more.

Her little personality is coming out. She’s got sass and she’s got sweetness. She’s like a sweet-tart…a good mix of both. Very independent. I’d say that’s her biggest attribute. Very rarely will she ever “want” mommy. If she does it’s at nighttime or it’s while she’s fussy or when she’s hungry.

Speaking of nighttime…boy-oh-boy the 10 month sleep regression! And I thought the 4-month sleep regression was bad. I was sadly mistaken. At least at 4 months, she didn’t flail around, wake up and look around as you held her or scream at the top of her lungs into my ear as I held her in my arms. Those days a blur. But I’m sure if I venture back to my blog, I wrote about how much I wanted to run away or claw my eyes out. Because that is how I’m feeling now. With my hubby gone just about every other week, it’s been difficult tackling this one alone. Again, as with every other change, once I get used to it or have a plan, it will all change again. Like my good friend said, “one step forward and two steps back”. So true. It’s hard to keep my cool when I’m exhausted beyond words. Not to mention still pumping every 2-3 hours, takes pretty much all my energy. I’m looking forward to her transition to foods (when and if that ever happens) so I can feel a release and get my freedom back. Needless to say, I’m beyond ready to give up the breastfeeding/pumping phase. It’s time. It seems my entire life revolves around it. And I must say, I’m pretty proud I’ve made it this far. My wonderful husband often reminds me how great it is that I’ve made it this far. My baby girl has had the best nutrition ever. I was and am so blessed to provide this for her. But as I am able to feed her, I’m also struggling to take care of myself and my own health. With celiac disease and Barrett’s esophagus and Osteopenia, these things take a lot of my nutrients and rid them. And then breast-feeding takes the remainder of the good. So that leaves me feeling drained, tired, weak and hungry all the time. I eat like you wouldn’t believe. But cannot keep the weight on for the life of me. I am still dropping the pounds. And actually cried with my GI doctor last week about it. I hate it. I hate that this disease makes me struggle with this. I just want to stay 120 pounds. But I’ve been a roller coaster of ups and downs. I refuse to be the 106 pounds I was pre-pregnancy. Although, I was very fit and very healthy then, I still struggled to keep fat on my bones. But eating terribly isn’t a option. No matter how much fatty foods I eat, my body (because of the celiac disease) just doesn’t absorb it. Sadly, it comes right out of me unabsorbed. Which is why it’s so hard for my body to absorb vitamins. Make sense?

I’m not quite sure if her nightly fussiness is a result of the top four teeth coming in or just a growing/changing brain. Or both. But the teeth are coming through and I know it’s uncomfortable for her some days more than others. Especially since I find her biting things that she’d never dare put in her mouth otherwise. She didn’t care much for a cold, wet washcloth. She doesn’t really like her hands/fingers wet. It’s hard enough to get her to hold onto an apple slice because it seems like she just doesn’t like to touch anything.

Speaking of apples…this girl is STILL not eating solids. It seems the only thing she will bite or chew on for more than 1 minute is an apple slice. Which thank God is a healthy choice. I made a huge FTM mistake last week. I gave her some of my egg bake. Which usually includes a ton of veggies, but this time I put egg whites, spinach, feta and red peppers. I was a stupid mommy and didn’t think that she had none of these things previously and I just gave her them all. She seemed to really like it at first. Ate a few tiny teeny bites. Gagged like she usually does with everything because of the texture and then within a matter of minutes her face was red and irritated (like with everything else, so I wasn’t that alarmed) and then the little bumps came. Then she got drowsy and itchy on her neck. Within about 10 minutes I started freaking out a little bit. She was fussy and so so itchy. Turning red in the face only. I tried to give her a bottle because it just so happened to be morning nap time as well. She wouldn’t take it. All she wanted to do was sleep. I put her in her swing and within 3o minutes, she woke up crying and fussy. I know that cry. I thought to myself “uh oh, her tummy is upset”. I took her out of her swing and held her and within seconds she was throwing up (awful cheese/milk smell) and screaming crying. More of a “I’m so scared, Mommy”, cry. At the same time, she had diarrhea so I went to change her diaper and noticed her entire body was beet red and hot to touch. And getting redder with each minute. She was itchy, drowsy and fussy. I knew I needed to take her to the ER. I panicked. I called Bobby and couldn’t get myself together. As I cried, she cried, I ran around the house gathering my breast pump (because God only knows how long I will be at the hospital, I thought) and flanges, bottles, milk, clothes, blankets, toys, iPad, chargers, etc. I started the car and called the pedi. They wanted me to give her Benadryl. But I was in such a shock that I couldn’t piece together the correct dose to give her. No matter how many times I read it and re-read it, I just couldn’t trust myself. Awful isn’t it? I’m a nurse for God’s sake! I should be able to do this, right?! What is wrong with me? I may be a nurse, but I know nothing about pediatrics. Sadly, it scares the daylights out of me. Especially since I had a bad experience in clinicals when I was in nursing school when it came to giving an infant Benadryl (long story). So I decided since she was already packed up in her carseat (and I knew she’d throw up if I gave her a dose anyway) that I’d wait until I got to the pedi to have them give her the correct dosage, and have an extra set of hands of two to help hold her down while one of us gave her the medication. I’m glad I took her to the pedi and not the ER. God only knows what would have been floating around the ER and how long I’d have to wait. We spent three and a half hours at the pedi while they monitored her and she slept on my shoulder.

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After that fiasco, she meets with an allergist at the end of March. And I also carry a Auvi-Q pen with me now, just in case. And I learned to keep Benadryl in the diaper bag for moments when you can expect the unexpected. Lesson learned.

Being a first time mom is hard. But being a first time single mommy is even harder. Especially when you have such a great, wonderful, helpful husband who you work so well with as a team. But he’s not here most of the time. Sadly, he’s traveling for work or out in the middle of the ocean. But I know he’d be here if he could. But like I mentioned before, this is what we signed up for by moving back to Michigan. So I’m trying to be the strong mom everyone thinks I am. But sometimes, I just want to shut the bathroom door, sit on the floor and cry my eyes out while I scream at the top of my lungs. I’d love a day out, alone, just to get my nails done. I’d do anything to take a day to go get my hair done like I’ve been wanting to (high-lighted/low-lighted) and not feel like I need someone to go with me or feel like I can’t go because I need to take Josie. I just want to be alone sometimes. I just NEED to be alone sometimes. And any FTM, can understand that, I can guarantee that.

Josie said buh-bye to Auntie Rachel the other day. But this was after her 10 month birthday. So I’d say this would be something I’d usually put in her 11 month update; however, it’s so exciting I couldn’t resist. She actually put her hand up and said it. I was jaw dropped and shocked. Of course we couldn’t get her to do it again, but it was nice to see someone else see her do something with me.

We got our first 2 feet of massive snow storm. Luckily, Bobby was home to see his “first Michigan snow” since moving back. It was nice to see and have him here to enjoy it. We both love the snow and the cold. And cannot wait for Josie to be old enough to enjoy it so we can take her sledding and build a snowman.

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While Bobby came home (for the few days he was here), we had the opportunity to go out together for the first time since we’ve moved back. Of course we went to our special little place…Ann Arbor. We made it to The Melting Pot for a few drinks, enjoyed each other, a good conversation and took a taxi home. It was nice.

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A few more things that are new: Josie says momma, dadda, baba. She knows what “bottle”, “are you tired?”, “are you ready for bed?”, “no”, “kitty-cat”, and all sorts of things, mean.

She will crawl across the room just to get an iPad, iPhone, remote control, or the home telephone. But if I put a book, toy or bottle she rarely budges. She will also go after the Kitty, too.

She can stand now if I hold her. I think they refer to this as “stand with support”. The longest she’s done it was for about a minute and a half. She’s such a strong little girl.

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I’m so excited to see her start eating foods, talking more, and walking. I know that these things are going to happen so fast and time will fly. Because it already has flown. I cannot believe my little girl will be ONE in just two months. Where has the time gone?

NOTE TO FRIENDS AND FAMILY:

At only 10 months old, sometimes I feel like people don’t realize how hard it is to leave the house and “visit” friends and family or run simple errands. Before I leave the house I have to pump and make sure I feed her. Once I feed her I need to put her in her car seat and wait for her to poop. Then take her back out and change her. Then I need to warm the car. Then I need to pee RIGHT before we leave because since I breast pump, I drink an ungodly amount of water daily, and constantly have to pee. So basically, wherever I am going, 9 times out of 10 I have to pee while I’m on my way there. This is a lot of work. And you can ask anyone who has ever been here and witnessed it. Now, if I were to take Josie somewhere for several hours, that’s an entirely different story. It requires MORE work. Not only do I have to do the aforementioned, but I have to pack my breast pump (which I REALLY don’t want to pump in odd places if I don’t have to because it makes my supply go down and I can’t really afford for that to happen considering Josie’s not eating anything except my milk and my milk is getting low), flanges, bottles, caps, nipples, fresh milk, diaper bag fully equipped with outfits (if there’s a blowout), wipes, diapers, blankets, burp rags, toys, possibly her swing (depending how long I stay at the location I’m going), possibly her pack n play (depending how long I stay at the location I’m going to), and water for me to drink (I refuse nasty tap water, sorry) and food that I can eat, since most likely I cannot eat and will not eat anything at the location I am going to because I have celiac disease. So when the other person can just walk out there door (someone say-without babies or kids to bring along) and hop in their car with nothing in hand and come and visit us, that would be the better, smarter choice-don’t you think? No one really knows the work that goes into traveling with a baby until you have one of your own. It’s a lot of work. It’s exhausting. Not to mention, it will throw Josie off her schedule (nap and bedtime) and then guess who suffers? Me AND her. Because then she will be up during the night, fussy or be difficult to get down to sleep. So, this message is to those that I have not visited: can you please try to understand WHY we have not or why we have not (in your eyes) “packed up and came over”. THIS is why. Please try to understand. It’s easier said than done. And believe me, if it was my choice, this kid would be eating solids and off the bottle, I’d be done with this breast pumping fiasco and warmer weather would be nice. But it stinks when people want me to take her out in this snowy, nasty weather in bitter freezing cold and do everything I mentioned above JUST so I can see or visit with you. Get it? I miss and love my family and friends. I’m here, in Michigan now…probably only (the most) an hour drive away. Please come see us and please don’t expect us to come see you. We’ll get there one day…but right now, it’s just not going to be that way.