Our feeding tube journey

Although I haven’t updated on Lylah lately on the blog, if you “know” me, most of you know that Lylah ended up needing a feeding tube placed in November. In the middle of October we switched her to an all elemental diet which was only elemental formula and apples for a little over eight weeks. (She has Eosinophilic Esophagitis-read about this in a previous post) This was going to be tough, but as always she totally pulled through and not much seemed to phase her. We took all foods away but apples, and our daughter barely batted an eye. Insert tear here. With an elemental diet, we would hopefully get a clean scope and then we would be able to introduce new foods one at a time.

Lylah was to drink 40 ounces of formula a day and eat apples, applesauce, and was allowed apple juice as well. This became tough. 40 ounces of the same thing every single day, gets old. She started getting cranky and looked sick. Pale face, sleepy, and just not her normal, happy self. We made a doctor appointment to check her weight and she had lost almost three pounds from the end of September to the end of October. We made a decision to place a temporary NG tube in her nose the following week to get her weight back up.

On November 2, 2016, me and her made the trip to Milwaukee to get her tube placed. This was rough, I had no idea it would be so painful and uncomfortable. I kept telling her it would only tickle, thinking it would just be an odd feeling for a minute. I never thought about the fact they would have to shove enough tube in her nose, down her throat that would reach all the way to her tummy. The initial insertion was awful and I felt terrible. It took her a bit to catch her breath and be able to breath without gagging. Once it was in and she was calm, she did great. There were a few times she would kind of gag on it but she would take a deep breath and it would pass.

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We had to stay the night to learn how to do feeds and take care of it. We also needed to see if she would even tolerate feeds. Everything ended up working out great, she did awesome as always, and I caught onto the feedings pretty quickly as well. After a day and a half at Children’s Hospital we were on our way home with lots of prizes and feeding equipment.

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The NG tube sucked, but it got her weight back up and that’s what we needed. We had to change her tape every few days and this was quite the task. It hurt, it was hard, painful for her and as parents you didn’t want to hurt your child. Tearing that tape off without moving the NG tube became our new norm. We had to bribe her, work up to it, distract her with our phones. One night my husband even told her that after we got it all changed she could paint his toenails. 😂 Of course she sat well that time. The doctors and nurses never taught me to check placement myself, so we had a couple incidents where the tube got pulled on and we ended up in the ER for an x-ray. This was something I wouldn’t miss.

In the beginning of December she had another scope and we would remove the NG tube and place a peg tube in her tummy for more of a long term thing. We knew Lylah would need this elemental formula for a long time. It would be months, possibly years until we got enough nutritious food back into her diet that would be enough to keep her healthy without that elemental formula. Just when I got used to the NG, we were inserting a peg tube for three months which would then be changed to a button.

On December 6, 2016 she had her eighth scope and a g tube placement. We had to stay the night in the hospital again to see if she would tolerate feeds this way and make sure everything was well with the new tube. I wish someone had prepared me for those first couple days after the peg tube was placed. When I got to go back to recovery by her, I was so saddened by the way she looked. She was exhausted and drugged. My poor three year old was on morphine! My little girl was in so much pain.

img_9422Nobody had warned me how uncomfortable she would be in the next week. She couldn’t even move. She screamed in pain if we had to adjust her for any vitals or anything. She wouldn’t get up to use the bathroom, so she held it. Her tummy hurt so bad she was afraid to even go potty. The night shift nurse told me that if she hadn’t gone potty by midnight, they would have to cath her. Thank goodness when they woke her up to check vitals she had finally went in a pull up. It hurt to carry her, it hurt to stand up, she couldn’t even walk normal. She would stay hunched over and she joked she looked like a granny. After all she had been through her sense of humor was still there. She lived in a stroller while in the hospital. Playing playdoh, reading and munching on popsicles.

img_9427She tolerated her feeds great, which was awesome, but the peg tube was something to get used to that’s for sure! Since it ran right into her stomach, it needed to be clamped at all times unless you were feeding. When you opened the actual tube, it needed to be clamped or her stomach would empty out. We have “fed the bed” a couple times, and forgot to clamp or unclamp, but we slowly got the hang of it.

Lylah’s tube will get changed to a mic-key button in April at her next scope. She is doing well and thriving and we have two safe foods!! Apples and chicken. We are currently trailing potatoes and quinoa, and we will find out in April if those are safe as well! I feel like we are finally on the right track and she is such a warrior she makes me proud everyday. She cleans her tube herself, applies cream and can take a tubie cover on and off. She is more brave and strong than some adults I know, and I know that because me and her daddy taught her to be. No disease or tube is going to run her life. We will get a hold on this and she will shine!

Goodbye 2016

Better late than never I always say…this is my goodbye to 2016. I thought I would reflect on some wonderful and not so awesome things that happened this year.

Let me start it out in the beginning..well sort of the beginning. On April 30, 2016 the hubs and I said “I do”!!! This has been a long time coming and all of you who know me personally know this exactly. We have been together foreva…since my freshman year of high school. *babies* There may or may not have been a few silly break ups in there but…we don’t count them. ☺

Fast forward to another great moment…June where we learned we were pregnant with baby number three!! Squee! We were ecstatic. So excited to be welcoming another little in February. But then one of our not so great moments…miscarriage the end of July/beginning of August. You can read about that on a previous blog post.

We had another big moment in September, when our little boy started Kindergarten! A full day with no breaks at a big kid school! (One of our local elementary schools)  Go Talen!

Something else pretty wonderful happened in September..but you will have to wait for this news. Stay tuned for another upcoming post.

Another not so fun moment, when Lylah started a complete elemental diet in the beginning of October. For eight weeks she was only allowed elemental formula and apples. This was pretty tough, but as always she pulls through like the trooper she is. But this caused her to lose almost three pounds in just over a month….so highlight number six….or is it seven? Whose counting? A feeding tube for our Lylah.

She had the NG tube placed for just over a month, gained all her weight back and was doing awesome. There were a few minor hiccups in there but nothing we couldn’t get through.

In December she had a g tube placed in her tummy since this will be something a little better for the long term. We are on a long road to getting some safe foods back into her diet!

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Our life isn’t too crazy exciting, so I think that’s all I have. I may be forgetting a few things and I’ll probably kick myself for it later, but this is all this tired mom can think of for now. I am so excited to see what 2017 will bring for my family. Take a moment and reflect on your last year and think about some things that were really great and some things that weren’t so great. It’s ok to remember the bad memories too, that’s what keeps us tough.

😘

Kiss Freely-Allergen Free Cosmetics

When we started on this crazy allergy journey we didn’t realize there was so much more than eliminating foods from Lylah’s life. Once she started her very first elimination diet we were told we had to eliminate the allergens from her soap, shampoo, toothpaste, everything. This was tough. A lot of the natural products I was coming across had milk, almond or beeswax in them.

Although we are lucky that she can still be near allergens, it’s hard to say if that will ever change. Some people go into anaphylactic shock when they kiss someone that had peanut butter earlier. Scary!

Since being on this path, I’ve been trying to eliminate toxic products from our life and it’s been hard. Not only is it expensive but there are so many options! Like any other little girl, our Lylah loves chapstick, lip gloss and makeup. It worried me when she would just grab anything and lather it all over her lips. I remember she had an allergic reaction to EOS lip balm. Nothing major but enough to make me say to myself “holy crap, these really can be dangerous for her.”

I came across Kiss Freely when I started following other allergy bloggers and moms on Instagram. It’s a wonderful allergy family owned company. They actually make all the products in a separate kitchen in their home. They are free of the top 8 allergens as well as sesame, shea,  beeswax, and coconut.

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About two weeks ago I contacted Kiss Freely and told them my story. I told them I struggled to find something safe for my daughter and guess what?! They gladly sent me a sample pack of their citrus lip balms as well as some lavender body butter, no questions asked. Gotta love a company like that! I was so excited when I got their package, they take great pride in everything they do. It was wrapped in lovely teal tissue paper and was closed shut with an adorable little teal ribbon sticker. They wrote me an extremely personalized note and I just feel like they truly care for their customers.

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The lip balm is amazing!! The citrus flavors are orange, lime and grapefruit. They make my lips feel extremely soft and smooth and I don’t have that feeling that I need to keep reapplying over and over like some lip balms give you….although it is so yummy I find myself reapplying a lot!

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Lylah loves these as well and she thinks it’s so great they are for people with allergies. Even though she is only three, she really appreciates when we find things that are made especially for people like her. I will definitely be a returning customer. They have a great story and great products, there is no reason not to purchase from them. They carry a long list of things like sugar scrubs, eyeliner, foundation and even face paint for Halloween! How awesome is that?! Take the time to check their website out and let me know what you think! 😘

https://kissfreely.com/

my miscarriage

Warning: this is a real, raw miscarriage story that goes into detail. If this upsets you or you have an uneasy stomach, stop reading.

In April we decided that I would go off of the pill just before our wedding. I had been on the pill for almost three and a half years so I thought this would be perfect timing to plan for a baby in hopefully February or March just like Talen and Lylah. We always questioned having baby number three, but upon approaching our wedding we knew we wanted to add just one more. My husband couldn’t stand the fact that our kids were getting so big so fast and I never really treated or cherished moments with Lylah like she was my last.

I downloaded all the apps to track my period so I could start recording all of my monthly “issues” and what not if you know what I mean. Surprisingly just a few days after stopping my pill I got my first period. It was horrendous. I hadn’t had a real full period since I was probably 19. I always took my pills back to back because I suffered from monthly migranes. But I was happy that my body got itself right back on track. I felt WONDERFUL off of the pill. I had been on it so long I never thought about what it could be doing to me. I was less stressed, much less irritable and I was interested more in sex, but that could’ve been the fact I was trying to get pregnant. 😊

I was that crazy lady who bought like 10 dollar tree pregnancy tests and ovulation predictors. I took a test even though I couldn’t have been pregnant yet, any woman who has been trying or is trying will understand the obsession that comes along with POAS. (peeing on a stick)

Each negative test I took was a punch to the stomach, but I told myself it will happen, some people do this for years. I cannot imagine. May passed and June came, and just a couple days before my period was due to come I had this gut feeling I always got and sure enough I got a positive test. I called my doctor immediately and went in for a blood test. I got the call the next morning and we were for sure pregnant!! I was over the moon and so was the hubby. We couldn’t believe how quickly it happened. I knew I was fertile but I didn’t think it would only take one month! According to my apps on my phone, my due date would be March 6, 2017 so since I would have a repeat c- section, we would be welcoming baby number three the end of February.

We started talking about all the things you talk about when you find out, names, finding out the sex, all the good stuff. We planned to keep it a secret as long as we could. We didn’t want to tell anyone until we were 12 weeks at least. With the other two we blurted the news out so quickly and made it Facebook official at like eight weeks. Not happening this time! It was our little secret and we were ecstatic to keep it our own.

Since I found out at four weeks the morning sickness hadn’t hit quite yet. My body was still working to grow that little baby. But shortly after I started with the exhaustion! Oh my gosh, so tired. I would get a full comfortable nights sleep each night, wake up and get ready each day and about an hour after being awake I had to practically tape my eyes open. I cannot believe how something so teeny tiny can make you feel that way!

Everything was going great and I had to wait that dreaded 10 weeks until my first appointment. Doesn’t sound too long but to anyone who is or has been pregnant understands that’s like an eternity!!!

About a week before my first appointment, on a Friday afternoon in July I had went to the bathroom and when I wiped there was an awful color discharge. Brownish red mucousy blood? I thought to myself, ok, it isn’t bright red, this is ok. It’s completely normal for this to happen, some women bleed throughout their entire pregnancy. I called my husband and he warned me to call the doctor to just make sure things were ok. They scheduled an ultrasound for that evening. I was nervous, freaking out now because they thought it was serious enough to come in.

I went in for the ultrasound and it was the awful, dreaded vaginal one. Ouch! So uncomfortable when they crank that damn prove around. As if I wasn’t feeling uneasy enough already. By now I would have been almost 10 weeks. We’ve known since the beginning of June and this was the end of July. The ultrasound tech was friendly, asked about my other kids and pregnancies, she was taking all the measurements and checking things out. It was too early to hear the heartbeat on the machine but you can see it. She showed me, sure enough, our little babies heart just flickering away. The heartbeat was 157. She said everything looked great but baby was measuring at six weeks, so I was almost a month off of what I originally thought. This was the part that didn’t make sense. How could I only be six weeks along, but have known for six weeks? There is no way I found out the day I became pregnant. That’s impossible. Inner with the doctor after and again she reassured me things looked good, baby just measured smaller. This gave me a new due date of March 22,2017. She told me if the bleeding persisted and became RED and I had cramping along with it to call back right away.

I went home feeling ok that night but a little confused, something in my stomach didn’t sit right with me. I knew my body and felt off. The next day we of course had plans all day. A family reunion and a big afternoon out at EAA and hanging out til the night show. I woke up feeling pretty good, and that afternoon was still bleeding slightly. I guess I knew what was coming, just didn’t know how to believe it or what to do about it. It was a hot day! We did a lot of walking around EAA, checking out all the planes and eating yummy food, the kids were  excited to be there.

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I was still bleeding, but feeling ok. The night show was approaching so we decided to stop at the bathrooms and find a place to sit for the night. I went to the bathroom and asked my husband to keep the kids so I could go alone, when I pulled my pants down to sit, I just about passed out. I passed my baby in the pad I had on. This teeny little clear sac that had a little human inside of it. I lost it. I just miscarried my baby in a damn portable bathroom with tons of other random women in there. Not in the comfort of my own home, in a frickin fancy porta potty. I couldn’t flush it. I could not bring myself to flush my baby down the toilet at EAA, what was I supposed to do with it? I don’t know, but I couldn’t leave it here! I wrapped it up in a small pantiliner I had in my purse and put it in an inside purse pocket. What the hell…I felt so weird and almost creepy but I was seriously just lost. I quickly washed my hands as fast as I could without bursting into tears and ran out of there. As soon as I walked out and saw my husband and kids, I started bawling. I just clenched onto my husband and told him what had happened. I was hysterically crying. Everything around me stopped. I didn’t see anyone else. I didn’t hear anyone else. My kids were looking at me like I was a nut. I didn’t know what to do. How do you tell your kids why you are upset. This wasn’t just a stomach ache or something, my baby was literally just pulled from my body. We walked back to our seats to just figure things out for a minute.

The kids were so excited for the night show. I couldn’t imagine telling them we had to leave because I didn’t feel good, they would hate me. I just had to sit there and act like nothing had happened. I had to put a smile on for my kids when all I wanted to do was curl up in bed and bury myself in blankets and just scream! By now the “contractions” started to come. When you miscarry, you literally go through labor. I had no idea how painful it would be. Something so tiny could make your body feel that much pain. I just laid on our blanket and cried into my husbands lap. Anyone who saw me had to think I was batshit crazy and having a mental breakdown or something.

We got through the show and got out of there. We stopped at Walgreens to get ibuprofen and headed home. I immediately got in bed and just finished the sobbing I had to hold back in front of the kids. I cried and cried and cried until I just fell asleep. The next morning the cramping was done but the bleeding was not. I immediately felt and urge to be with my mom. At 8 am, I texted her and told her I was coming over. I also texted my sister and told her to meet me there with no kids. They were so sad and sorry. They had no idea but that’s because we didn’t tell them. I miscarried my baby July 30, which is my moms birthday.

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It isn’t anybody’s fault and I never felt that guilt that I’m sure some women feel. There was nothing I did wrong and nothing I could’ve done to prevent this. The next week was rough. I wanted to just stay in bed. And I think I kinda did. My kids are three and five and pretty independent for the most part. They snuggled in bed with me and watched Netflix while I slept. I felt terrible but I had no energy to move. I couldn’t eat. When I would get up I felt like I was about to pass out.

That Wednesday I went in for blood work to check my levels. They were around 400, and I had to go back one week later. I know this is protocol, but I wish I could’ve just been done with it all so I could try to let go. This little old lady at the registration desk saw I was getting my BETA levels checked and asked how far along I was. It wasn’t her fault, she didn’t know, but I wanted to kick her in the knee. I know that’s mean, just so many emotions. The next week my levels we down to the 20’s so the miscarriage was going in the right direction. If numbers stay high they usually do an ultrasound to see if everything passed. I was glad everything did so I didn’t need any intervention.

The weeks after were hard but we knew we would try again. Having this happen made us want another baby even more now. It made us stronger, and made me see a whole new light of what a lot of women go through. One in four women have a miscarriage. It’s extremely common, but such a taboo thing to talk about. I didn’t want my friends or family to be afraid to ask me about it. It was our third baby, it’s a part of our life, it’s not something I want to just block out. I think about my baby a lot.

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Stay tuned to the blog in the next coming months as we will hopefully have an exciting announcement! 😘

Free or Cheap Date Nights you’ll both LOVE!

Date night, maybe some of you do it often, and maybe you haven’t been on a date with your SO in almost a year.

My husband and I do date night every now and then but not as often as I’d like. If we do, it’s usually just dinner. Movies are too expensive and our town isn’t too exciting. If you are looking for something free or cheap to do you have come to the right spot! I have sat and brainstormed some perfect date nights or days just for you!

GAME NIGHT

This is self explanatory, have a date at home with a fun game night! Pull out some board games like Life, Candy Land or the ol Chutes and Ladders. Don’t have board games? No problem, grab a deck of cards. We recently taught our kids how to play War and they thought it was the coolest thing ever. Mom and dad had a little too much fun with it as well! Don’t even have a deck of cards laying around, that’s ok too! Paper and pen, TIC TAC TOE! It’s so fun to see each others competitive side come out and see who can really win at this. If you are both pretty sneaky, you might have a few tie games, but it’s all in good fun.

You could really plan a big game night and invite all your couple and or married friends as well!

STARGAZING

I think everyone has done this at least once in their life. Grab a big comfy blanket and plop down and just lay and let the stars do the work! Look for the constellations, find the brightest one or wait for shooting stars. You can do this in your backyard or if you own a truck, bring a few blankets and pillows and drive to a scenic location and lay in the back end. Sounds like a nice date night to me!

BEACH DAY-

Live near a local beach? Perfect, pack a picnic lunch, a big sheet to lay on and some tunes and have yourself a little day date. Don’t forget the sunscreen! Enjoy the sun, sand and waves. Bring a fitted sheet for this tip below. Remember to leave the baby with the sitter. ☺️

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BIKE RIDE

The hubby and I just got bikes in the past few months. While we’ve only rode alone a couple of times, it was so much fun!! Our playful sides come out and we see who can go faster and what not. Public Service Announcement: don’t ask your husband if he can ride without hands….he will try, run into you and knock you off your bike. *oww*

I downloaded Map My Ride by Under Armour and it’s fun to see how far we went, how fast we are going and what our pace was doing the ride. How fun is it to have a date and get some cardio in there too?!

WATER FIGHT

We have never intentionally planned a water fight. There has been a time or two where we have done the ol dumping cold water on other person while they are in the shower trick. My hubs has done this to me and I so wanted to get him back, so I dumped water on him when he was all dry and dressed. That my friends, is how a water fight begins. It’s so fun while it’s going down, but what a mess it is to clean up!! Take it outside. Buy water guns or balloons and wait for the other SO to get home and get them when they least expect it!!!

FARMER’S MARKET

Most cities hold a farmers market on Saturday or even on the weeknights. All are free, if you don’t buy anything. Go on a Saturday morning and get breakfast together. I know our local one has tons of food and also some of the shops and restaurants along the street will have specials and what not. Egg rolls anyone? Yum! It’s great to support local farmers and business and buy food knowing where it came from!

TAKE A HIKE

Literally, not the term like “get outta here!!” 😂 Two summers ago we went to High Cliff State Park, again, we were with the kids but it was still a blast. Most state parks charge a fee to get in, but it’s minimal. We hiked all along the trail, had beautiful views, and then went to the beach to cool off! There are so many state parks and trails around, you shouldn’t have to drive too far from home to find one. If you are from there area and want to check out High Cliff click the link below  for the address.

https://maps.google.com/maps?oe=UTF-8&hl=en-us&client=safari&um=1&ie=UTF-8&fb=1&gl=us&entry=s&sa=X&ftid=0x8803a4845c5417f3:0x56da0a63b43a84ef&gmm=CgIgAQ%3D%3D

NETFLIX  & CHILL-

I read the other day, some younger millenials refer to Neflix & Chill to having sex. What the?! Seriously, I honestly just wanna watch Netflix and chill. Get some yummy junk food and just veg on the couch with each other. There is so much to watch on there it isn’t even funny. Really, there is so many choices, we usually spend more time going through the movies than we actually spend watching the movie before falling asleep. For real.

TAKE A RIDE-

Just get in the car and drive. You don’t have to know where you are going, just go. You might run into an awesome restaurant or a cool little shop you’ve never been to. If you went somewhere as a child and want to show your SO, take them there! The possibilities are endless!

COOK TOGETHER-

Does one person always make dinner? Switch it up and cook something with each other. It’s nice to sit down and enjoy it together knowing you both worked together to make something delicious! Cook a big three course meal you can both enjoy, save the dishes for tomorrow!

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The day my daughter went into anaphylactic shock

Just two short days ago was one of the most trying days we’ve had with our little Lylah and her allergies. Lylah is allergic to a lot of foods, it’s currently easier to name the foods she can have rather than not. Due to her EOE, (read about this in one of my previous posts) she is on an extremely limited diet. We are trying to find her “trigger” foods which is hard and frustrating, but that’s a whole other story.

Monday, August 1st, started like any other day, except due to a family matter that weekend, we were home alone and I wasn’t watching any of my daycare kids. (Thank goodness) For lunch Lylah wanted her usual, turkey dog and baked beans. Something she has been eating for months safely, with no issues and two things she isn’t allergic to. Wasn’t allergic to.

She ate her food on the kitchen floor right by the living room so she could watch tv, I know rough life. After having majority of the beans she came to me complaining of a tummy ache, this was normal, she complains of her tummy hurting often and usually right before she needs to use the bathroom. I was down for some snuggles so I picked her up and she sat in the chair with me. She layed her head back and before I knew it she starting gagging and immediately threw up, this was also normal for Lylah. The condition she has causes swelling in the throat causing vomiting and food getting stuck. What happened in the next ten minutes or so wasn’t normal for her.

Within a few minutes of getting her cleaned up and the blankets taken care of she started sneezing. And when I say sneezing I mean really sneeze, like loads of snot. And beans. Each time she sneezed. I wasn’t concerned quite yet. Until she did it about 30 times, no joke. I started looking at her head to toe, checking for hives or any other symptoms of allergic reactions. I asked her if her mouth hurt and she said yes, asked if her tongue itched, it did. Now I am sitting here like “oh crap, this is happening” I grabbed our Epipen pouch where I also keep travel size packages of Benadryl. Lylah hates medicine, so of course me trying to con her into this didn’t work well, she started to take it and immediately spit it out. My next thought was giving the EpiPen, I’ve always been told by other allergy moms and doctors that if you are questioning it, more than likely they need it. After you give an Epipen, you need to seek medical attention immediately, do I drive her to the hospital? Do I call 911?

Calling 911 made me nervous because I didn’t know the protocol about riding in the ambulance with my son, I didn’t have anyone to get there in time for him. In an emergency I figured it would be fine, but I knew that I would be able to get her there in about the same time the ambulance would get to my house, I have a straight shot on the highway to the ER.

Like I mentioned above, I didn’t have any daycare kids, so I was being lazy, I mean no make up, messy hair, and pajamas lazy. Oops! I got dressed as quick as I could, threw my hair in a pony tail and told my son to get his shoes on and grab hers.

By the time I gave her the Epipen, she couldn’t breathe from her nose and she was holding her mouth open and was drooling. Everyone I’ve talked to asked if I was so scared to do this, and my answer is “not really.” I knew she needed it before she got worse and it possibly saved her life and that’s all I could think of. I put her right leg in between my two legs so she wasn’t able to wiggle out and I kind of pushed her body to the side so I could block her from the epi.  I hesitated a few times before finally giving it, and as soon as I did, she was not happy. You are supposed to inject it and count to ten to be sure all the epinephrine goes in, I definitely did not count to ten, but I just keep reassuring her she would be ok. When it seemed like the ten seconds was over I picked her up and we ran out the door.

The car ride sucked but it went fast, I was flying down the highway, just praying I didn’t get pulled over or anything. She sat in her car seat and screamed for dad, telling me that she loved me so much and she was sorry, insert tears here!!! My poor girl thought this was her fault! I told her I loved her so much and that I was gonna keep her safe and get her to the hospital so the doctors could help us.

Once we got there I was expecting everyone to rush us into a room, but that did not happen. The registration lady wasn’t really on top of things, she didn’t understand what was going on even though I explained myself clearly a few times. We had to sit for a bit which felt like forever with a crying, upset child, but it was probably only five minutes or so. We got called back and then that’s where my vision came into play. There was one doctor and four nurses. The doctor started asking me what happened, detail for detail and one nurse hooked her up to oxygen monitors, while another was getting the blood pressure cuff on. The third was using a little light to look into her eyes and check her mouth and the fourth was recording everything on the computer. They told me I did an awesome job with the Epipen, yes!!! Mom for the win!!

Dad came and she calmed down a bit, shortly after they gave her two shots of Benadryl which knocked her out not long after. We had to stay to be monitored for a little over an hour. She was comfortable and dozing in and out and that was okay. All the swelling was better an her oxygen was between 99 and 100. We were told to follow up with her pediatrician and allergist and for the okay to go home. Props to Mercy Medical ER Staff in Oshkosh. They were all awesome!!

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We still aren’t sure what caused this, it’s obvious it had to be the beans or the turkey dog, but how? Something she has had so many times, all of a sudden gave her a problem like this? That’s what’s so confusing about allergies.

We are waiting to hear back from her allergist to see what our next step will be, but definitely no baked beans for now. I am hopeful this won’t happen again if we are careful, but it’s so scary knowing how easy something like this can happen. I am thankful it wasn’t any worse, because I can’t imagine dealing with anymore symptoms than what she had.

If you are an allergy mom or dad, or know someone who suffers from food allergies, educate yourself on the signs and symptoms of anaphylactic shock and how to properly use the Epipen. You never know when you may need it. Since Lylah’s allergies aren’t usually anaphylactic, I never thought I would need it! Check out this card below and keep it handy if you are ever questioning injecting yourself or someone else.

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Essential Oil Bath Salts

My love for essential oils all started about a year ago when a friend and I went to a Strong Moms group at our local YMCA. The kids play while the moms do a class and or activity. The first one we went to happened to be about essential oils. Young Living to be exact. That’s when I fell in love!! The lovely ladies there weren’t trying to sell us anything, just giving legit tips and recipes we could use in our home to keep our families safe and healthy. One of the recipes was a bath salt, although I already enjoyed taking baths, bath salts made me enjoy them even more. You may use any oil you would like, some good ones are lavender, cedar wood, stress away, the possibilities are endless. For this recipe I used a blend I call peaceful sleep, it’s a great way to end a crazy busy day and also great for the kiddos!

For this recipe you will need:

one mixing bowl

a spoon or rubber spatula to mix

one tablespoon to measure

1/2 or 1 C. measuring cup

Epsom salt (any brand, I like Dr. Teal’s)

Baking soda (also any brand)

your choice of essential oil(s)

container(s) to store

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Recipe:

Into a mixing bowl add one C epsom salt and one tablespoon of baking soda and stir. Add 10-15 drops of your preferred essential oils and mix. You may do more or less depending on potency you would like.

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Once all mixed together you may add to any container you would like. I love to use glass baby food jars, they are the perfect little sice for gifts and are easy to store! If you are giving as a gift, add a cute little tag and add some directions, not all people know bath salts aren’t for eating!! 😂

This recipe makes about nine ounces. I filled two glass baby food jars up perfectly!

I usually add one tablespoon to a warm bath, sometimes more, depending how I am feeling.

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After you use a bath salt, make sure you drink plenty of water, most oils and the hot bath water cause your body to detox so you will want to stay hydrated!

Enjoy!

Ronald McDonald House

Where should I start? First off I will say “Thank you!” Thank you so much to The Ronald McDonald House of Eastern Wisconsin! They have been such a blessing to have these past six months or so. We have stayed about four times now and we are so thankful and appreciative to everyone who works there, volunteers, or has donated to help them help families.

I’ve always heard of the Ronald McDonald House when I was younger, you’d save the pop can tabs for them and donate your spare change at McDonald’s, but I never once thought of ever needing their help. When this journey first started for Lylah and she had her first surgery, we had to arrive at the hospital which is about 90 minutes or so at 5:30 a.m. That meant getting. Up at 3 at the latest to get ready if we had everything else set to go. That is an early morning for us. Before changing my lifestyle recently you couldn’t get me out of bed any earlier than 6:30 most days, especially on a weekend!! 😊

For Lylah’s first surgery we stayed in a hotel nearby, $120 later I knew this wouldn’t be an every time occurrence. No way could we pay that every six weeks or so. My mom mentioned the Ronald McDonald House to me but I was sure it was for kids that were extremely sick and staying in the hospital for weeks on end. I gave them a call anyway. Sure enough, we were eligible to stay.

We couldn’t be in the same or surrounding counties, but we were far enough to qualify. You could stay if you wer inpatient, out patient, or just had an appointment at their clinics building.

We set up a phone call appointment with a social worker and we were all set to go for our next trip there.

When we got there we had to check in, read through some house rules and get a key. They ask for a $20 donation per day that you stay, that was easy enough for us! The place is beautiful. The house and everyone there is so welcoming and just makes you feel at home. They have a gorgeous playroom which the kiddos loved!

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Each child that stays gets a token for the “Magic Room” they get to go into this fun, colorful room and pick from a huge selection of toys. They get one you and one book each of their choice. This is all stuff donated by people, if you have ever donated, thank you! If you are thinking about it, contact me and I can get you their  information on what they take!

Majority of the nights volunteers will put on a family dinner, the cupboards are stocked full with snacks and ingredients to make meals. Volunteers also make sandwiches and snacks for “Lunch 2 Go” This program is for families that will be at the hospital for majority of the day. You can pack a lunch that way you can stay by your child and no need to spend extra money. ☺️

Each family has their own area in one of the many refrigerators for drinks and cold food and a whole cupboard to themselves for your own snacks as well.

When you get to your room, they always have a stuffed animal or teddy bear for the kids and a nice reusable bag which includes toiletries and a lunch bag for Lunch 2 Go. They offer a room with a twin pullout couch and a queen bed, or a room with two twin beds. All rooms have a mini fridge where water, breastmilk, and medication can be stored. They are so quick to help anyone, we forgot the stroller once and they have strollers and wagons that are available to use!

 

There is a convenient walk bridge from the house to the hospital that we use. It sure makes parking at the house a breeze instead of the hospital.

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I cannot say enough about this place and we are so happy that we are lucky enough to stay. Sometimes I wish we were a bit closer so we could give back and volunteer. We are definitely going to donate some items during our next stay. They can always use brand new books and toys for all ages, toiletries such as mini shampoo and conditioners, travel size deodorant, toothpaste, etc.

This is a place my kids will always remember and me and my husband are so thankful for! ❤️

Eosinphilic Esophagitis Part 2

Since we got the clean scope and the okay for an elimination diet, we started right away!! To the grocery store we went, looking for anything and everything that Lylah could eat and would hopefully want to eat. We have a local store where there is a nice selection of organic and allergen free foods. We were cutting out bananas, dairy, wheat, soy, eggs, all nuts, fish, shellfish, pork, and beef.

When I first looked at this list, I was scared. What was she going to eat?! Lots of chicken, that’s for sure! A few things we picked up were these Ian’s Natural Foods chicken nuggets, which  were made with a corn breading and were top 8 free. Little did I know, these would become her favorite thing to eat! We tried the quinoa burgers, which she hated. They were very bland and had a weird texture ( I tried them 🙂 ) We picked up some rice noodles for pasta nights, we could easily serve the sauce over them without the meat. These were a hit! And don’t get me started on the Enjoy Life brand!! Yummy soft baked cookies, s’mores granola bars, mini chocolate chips that we could use to spice any little dessert up for her! These products were mostly rice based and top 8 free which is exactly what we needed!

 

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Lylah stuck to this diet until January. It was a long, tough road through the holidays, but we got through it. She is so strong, I don’t know any other child that is okay with not being able to eat all of their Halloween candy. We used something called the “Switch Witch” but I can tell about that in a different post!

Come January 7, we were ready for Scope #3. This time we stayed at the Ronald McDonald House of Eastern Wisconsin so we didn’t have to make the long ride to the Children’s Hospital so early. I cannot say enough good things about them, they are helping so many families that are in need and it’s an awesome place. We are truly blessed to have everyone there and all the volunteers that make our stays great! Bright and early we are up for surgery, pre-op goes well, and Lylah is a trooper! Out of all things in that place, she is the most scared of the scale! What? I have to get on there with her and they weigh the both of us and subtract my weight. (oyy)

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Off to surgery she goes, and we wait. While she is waking up, the doctor comes and talks to us. We were so hopeful for good news, and we got it! NO eosinophils!! We were so happy! Our next step was to find out what her trigger foods were. What exactly was giving her the allergic reaction which produced the eosinophils?

Her doctor  told us that in about 75% of cases, dairy is the only trigger. Instead of scoping her every six weeks, and reintroducing one food at a time, we decided to go for it and introduce EVERYTHING back into her diet but dairy. After a couple hours of recovery and a few popsicles later, we were headed home.

This was great! She could eat so much stuff!! It was so fun for her! Teddy grahams, crackers, dairy free cake!! What? She was in Heaven and so was I. Do you understand how easy it is to just shop dairy free?

She was doing great. No signs of any problems, no vomiting, no crankiness like before. This is just what we needed, for it to just be a dairy allergy! That would make our lives so much easier! Once again, we headed to Milwaukee for scope #4 hopeful.

All the same routine, I was surprised they didn’t know us by name. Each doctor would come in the room and give us their talk. I would have loved to tell them that we were not first timers and I got it, but like the friednly, responsible mom I am, I sat there and smiled and nodded my head. 🙂

Her doctor called us into the room, and I could see on his face he had bad news. All the eosinophils were back. Where did we go wrong? It wasn’t just dairy that was bothering her, it was more. But what? Her doctor suggested we have some more allergy testing done and go from there.

See the next post to stay updated on Lylah’s EOE story!

 

Lylah’s Story-Eosinophilic Esophagitis

When Lylah was a baby she was pretty “normal”, she slept good and was usually happy for the most part. At about two or three weeks old she developed a terrible rash on her face. Tiny, red dots all over. I let it go for a day or two because baby’s get that obvious acne and have sensitive skin. It didn’t get better so I took her in. She was allergic to cows milk. They changed her to soy formula. It got worse.  😦 Another day or two later, we were back at the doctor and they switched her again to Nutramigen Formula which was hypoallergenic and for babies allergic to cows milk. After a day of being on that, we noticed a difference right away!

As Lylah got older, she did well, but was a pretty fussy baby. She had reflux, so was on medicine for that. She would have crying fits where she would just cry and cry and we had no idea what was wrong with her. She wouldn’t eat, wouldn’t fall asleep. We would sometimes just put her in her crib until she was better and could sometimes calm her down with a bath. We waited to feed her baby food until around six or seven months because of the cows milk allergy. When she started rice cereal or oatmeal she did great. She did good with veggies and okay with fruit. There were a handful of times that she had reactions to certain fruits, I honestly never even thought she was allergic to it. I just thought she had a bit of a sensitivity to it.

Fast forward to when she finally started table food around age one and things only got worse. She started vomiting after eating some table foods we gave her. We never noticed a pattern or could really point a finger on the culprit. That was until we gave her yogurt three days in a row for breakfast and every single time, she got sick. It was obviously dairy.

Just after she turned one, we got the referral to head to Children’s Hospital and get some allergy testing done. They tested her for the top eight allergens plus chicken and corn. Everything came back negative. Which was great but I still knew something wasn’t right.

She just kept getting sick. Vomiting after eating, sometimes during eating, and even hours after eating. She would even cry so hard she would throw up at times. Her pediatrician couldn’t figure it out, she referred us to a speech specialist for eating therapy. The speech therapist thought that she wasn’t chewing her food well enough, we worked to get her to chew better and had to cut her food up extremely small. I never thought I would have to teach my child to chew! After a few appointments of it still not getting better her therapist (who I loved by the way!) decided it would be best to do an upper GI x-ray. This is where she would swallow some barium and they would watch it go down just to make sure that her esophagus and all parts were connected normally and this wasn’t the cause of the vomit. The day of the procedure, Lylah didn’t cooperate. At all. She wanted nothing to do with the barium that was ever so secretly hiding in the peaches.

Again, we were just stuck with no answers. Finally in May of 2015 we were referred to a GI doctor down at Children’s. We did the upper GI x-ray and everything came back normal and she did great!!! It’s so much easier and I felt much more comfortable at Children’s Hospital since they specialize in kids! Our next step was to follow up with the doctor and get some blood work. Her blood work revealed that she was healthy but she had some food allergies. Cows milk now came back positive, along with wheat, soy, egg, and peanut.

Step number 1,256 😉 go to the allergist! We went to Bellin Heath Center for Asthma and Allergy in Neenah. There was no way I could get to Milwaukee this often for all of her appointments. We followed up with some skin testing and again it revealed that she had allergies. Dairy, wheat, soy, egg, peanut, cashew, banana, beef and pork. What was I going to feed this girl?! Little did I know, this would be an easy diet. After a long visit with the allergist and going over all of her history, he mentioned the disease Eosinophilic Esophagitis or EOE. EOE is a recently recognized allergic/immune disease in which large numbers of white blood cells called eosinophils are found in the tissue of the esophagus. A person with EOE will have inflammation and swelling of the esophagus causing recurring abdominal pain, trouble swallowing, food getting stuck in the esophagus and vomiting. How do you treat EOE? Since there is no cure for this disease yet, the only way to treat it is with diet or steroids.  This sounded crazy to me. There is NO way Lylah had this, it would make sense but of course I didn’t want my daughter to have a disease like this. The only way to diagnose this, was with a endoscopy. My little girl would have to go under just to see what is wrong with her. We were sent home with a prescription for an EpiPen and was told to follow up with the GI doctor.

SURGERY-

On July 9th we headed down to Milwaukee to stay in a hotel for her surgery the next day. We had to be at the hospital at 5:30 am, so a bit of an early morning for us if we would’ve drove down that morning. We were nervous, but hopeful. Dad had to stay in the waiting room with Talen, so I was in a room doing a the pre-op with Lylah. Temperatures, blood pressure checks, height and weight, our little girl was not happy being poked and prodded at. Could I blame her? No. She was just over two years old. The surgery only takes about 45 minutes or so and she is in recovery for about 30 minutes and then they can come get one parent. While in recovery the doctor comes out and tells us how everything went. He revealed that she did indeed have EOE. What would we do? How would we deal with this? We had so many questions.

She woke up SAD! She was tired, confused, in pain, and hated having an IV in. Could I blamer her for that either? No. After some more rest in mama’s arms, a popsicle and juice, we got the okay to take the IV out and head home. We would follow up with her doctor and a dietitian shortly after.

DIETITAN-

There were so many restrictions she had, I was so confused, but her dietitian reassured me, that this elimination diet would be doable. We immediately started Lylah on the swallowed steroid to treat the disease until we figured a plan out. We also needed to see if the steroid worked for her because if the diet didn’t, we had something to fall back on. The steroid was pulmicort, normally what is used for a nebulizer, but Lylah would swallow it on a spoon, with two packs of splenda to make it taste better. Eight weeks later, we would scope again to see if it worked. Our first dietitian appointment was just to kind of come up with a plan of action. We knew we would treat this with diet. There was no way we were going to put our two year old on steroids until further notice. That appointment was just talking pretty much, telling her dietitian about all of Lylah’s eating habits, starting a food journal and to make sure to start tracking symptoms. We would follow back up with her after the next scope.

SCOPE #2-

October 10th was Lylah’s second scope, and it came back clean!! We use the term “clean” meaning the eosinophils are gone! Now we would start her diet shortly after. Another trip to the dietitian and lots of learning and even an hour long slideshow of anything EOE and allergy related you can think of! Eating out, cross contamination, cooking at home with allergens, keeping things separate and nothing shared, and more. We would cut out dairy, wheat, soy, egg, peanut, tree nuts, fish, shellfish, beef, pork, and bananas. I thought this was going to be so hard. What was I going to feed my daughter?

Stay tuned for the results of Lylah’s elimination diet, coming soon!