FPIES Update

On Sunday, Mother’s Day, I ended up going home sick from work because I puked. I was feeling out of it. I had had a headache for a couple days. I still went to my ex’s house for dinner after taking some Zofran. However, I left right after and went to bed by 6 pm. I didn’t sleep through, but I stayed in bed until 8 am the next day. In the morning, I still had a headache when I woke up but my stomach felt 100% better. That’s the thing about FPIES, once it is out of your system you are normally fine.

I was worried about soy allergy because it is so closely related to dairy, however, I ate soy sauce with my sushi last night and it didn’t affect me at all. Really not sure what bothered my stomach this weekend. I wonder if I only threw up because of my migraine and the rest was from the small bit of Nutella I had Friday morning? I’m unsure. The only other thing that timing wise made sense was that the pasta sauce upset my stomach a bit. I have some leftover which I’ll probably eat today. I am expecting it to be fine but I do swear at one point I had an issue with basil.

One of the things I have to be careful about is not overreacting. Making sure I am really allergic to something is important so I am not cutting out foods for no reason. When I had the basil issue, I noticed that once I made homemade pasta and forgot the spices at the end. I was able to eat that fine but not canned sauce. I made it again with basil and oregano and was sick. The third time I made it with just oregano and was fine. If I were to do this again, I would eat basil on like a potato which I know is safe, and see how I felt just to be extra sure. There are a lot of ingredients in store bought pasta sauce and it could be anything.

A lot of times I’ll get sick from a normal meal with a bunch of ingredients. It takes some detective work to figure out what is going on and narrow down the one thing upsetting my stomach.

I reallllllly hope it is just dairy this time. I can live without dairy. Last bought of allergies even vegan pizza upset my stomach. Even if I can’t eat dairy ever again, it would be super nice to be able to eat vegan cheese. I don’t know how to end this (haha). Wish me luck?

FPIES Hitting Me

My stomach is a mess. I know I had some Nutella yesterday morning, which has dairy in it, but usually it doesn’t affect me the next day. I’m half convinced I’m back to having multiple food allergies but it too soon to say. Going to have to go a few more days without dairy. Pretty embarrassing but I’m so gassy today, which is unusual for me. If I fart one time its usually allergy related. When I’m feeling well, I just don’t fart (haha).

If you don’t know I have FPIES which is food allergies that make you puke or have diarrhea within certain time frames.

Today, I also have had bad acid reflux mixed with nausea, which, for me, is always related to my allergies.

I’m feeling a little anxious and depressed. I wish I could go back on my McDonalds diet of three hashbrowns for breakfast and two hamburgers for lunch and dinner. Joking. But not joking. It seriously worked. My stomach was mint and my allergies were under control.

A few months ago I couldn’t eat dairy, soy, pork, bell peppers, and eggs. I am very curious if that is what the problem is. I didn’t really eat any of those today though, besides some egg powder in chicken strips. Before that never bothered me this much though.

Yesterday I did have chilli with bell peppers, beans and corn for lunch. I just find it weird that I would be so affected the next day, especially the acid reflux, which has gotten worse through the night (but wasn’t bad this morning).

I’ll let you guys know what’s what in a few days when this dairy gets out of my system more. Hope you are doing well!

It’s Been Disgusting Up In Here

Let’s start with Monday. On Monday I get home from work and my baby boy has a mild fever. My daughter seems fine. My grandma and I already had plans for lunch and my son was being cooperative, so we go to a really close restaurant. My son wants pink lemonade and he is spoiled. We order them lemonades. The waiter comes back with fruit punch. While we were waiting though, my daughter said she didn’t want lemonade she wanted the red one. In my head, I’m thinking, “wow, worked out well”. I don’t remember my daughter ever being allowed to have fruit punch before. The drinks come with a sour key, which they both eat. She’s also never had one of those before. What she has had before was a fruit roll up, which made her projectile vomit all over the place. Also, cake with blue icing. She really seems to have issues with fake fruit foods too like Nutrigrain bars and Fruit to Go. Basically I never let her have food dye or candy. She hasn’t had a reaction in a couple years though, so there was a chance she had outgrown her allergies. Now, I don’t think she has. I thought, “we will see if she gets a tummy ache and then we will know for next time”.

Well, that night she projectile vomits fourteen times. After the first few times a lot of dry heaving was involved. Now you could think, fruit drink, candy, definitely the culprit. You would be thinking like me! However, in the midst of the vomiting, my son vomits twice. I chalked that up to not having dinner and having Tylenol. With the fever, maybe his stomach was sensitive. Nope. Stomach flu. My daughter and I both got fevers and ended up throwing up. I still, however, think she also had an FPIES (Food Protein Induced Enterocolitis Syndrome) reaction to that drink/ sour key. The main reason I think this is because she didn’t have a fever until almost 24 hours later and everyone only vomited once or twice a day for a few days. Actually, they still have fevers and vomiting on and off. It is Friday.

They are at their dad’s place now. Wish me luck as I sanitize everything.

I Was Told To Let My Son Die, Fuck That

Not naming names but when my son was six months old he was in the hospital for FPIES. We had switched to formula due to doctor recommendations. They were worried about my health while breastfeeding on such a restricted diet.

Within a week we had tried three different formulas and he was allergic to them all. It was a long weekend and he couldn’t keep down any of the prescription formula. We brought him to the hospital who said he needed to be breastfed. We went back to it immediately.

The person, who was close to our family, had been against breastfeeding Gavin from the start. They knew that most sick babies take formula and they were very concerned about my diet. I called them to let them know that Gavin was in the hospital and the conversation got heated. They told me I can’t go back to breastfeeding him and I need to let him die. They were convinced that Gavin wouldn’t make it no matter what and I was just going to die too if I kept going.

There’s a lot of choice words I have to say if I was still talking to this person. I fucking saved his life. I’d do anything for my baby boy. I couldn’t live with myself if I had just given up and let him starve to death.

One thing time has given me is this: I get it. I don’t agree with it, but I understand where they were coming from. I understand that they were scared and they thought they were helping. I understand that they just love me and my husband and were tired of watching us struggle.

I don’t know if I can ever forget it though. Not just that comment, but the months of fighting over breastfeeding. I don’t know if we ever want to see each other again.

I hope that if you have a baby out there, it’s healthy. I hope that no one harasses you over your choice to breastfeed or formula feed your little girl/guy. I hope that the people around you can support you past their own fears.

I Left Facebook, But Now I’m Back

Walking threw Walmart the other day, wearing my BFF Sea Punk JuJuBe backpack, I got stopped by a lady. She loved my backpack, wanted to know what other JuJuBe bags I had and told me about a Facebook group for them. She seemed really nice so I joined. Turns out she wrote a post about it and everyone was excited I was there.

That’s why I love Facebook, the groups. The groups and birthday reminders are the only things I really love about Facebook. I’m an Instagram girl.

Last year I deleted all my social media, which now, I regret it. At the time though I wanted a fresh start. I wanted SPACE badly. I wasn’t thinking about my beloved groups and friends when I had my impulsive movement of deletion. My Facebook friends freaked out and a lot of them tracked me down. It apparently created a lot of drama. This week I was welcomed back to my baby group and a lot of ladies were relieved to see me. I had no idea how much of an impact deleting my app would have. In hindsight, it kind of makes sense, I was on there a lot.

On Facebook in my former life, I grew a makeup business and I had my own makeup group. Now I am trying to rebuild on Instagram. It isn’t quite the same. My friends can’t post their makeup looks and chat with each other. There are things I like about it better though. Maybe one day I’ll go back to having a makeup group again. Lately though, I have been focusing on cardmaking. I doubt I would have a cardmaking group on Facebook though now that you can go live on YouTube. We’ll see. I seem to want to try everything lol.

I’m still in awe about how much people reacted to me leaving Facebook and how much of a welcome home I got coming back. These social media connections can be very real. If it wasn’t for social media we may have never found out that our son had FPIES. A wonderful mother suggested it and recommended we ask for a referral to a paediatric allergist. Him getting diagnosed helped me and my daughter get diagnosed. For that I will forever be grateful to that mother, Facebook and its many groups.


On Starting Over

I call it my phoenix rising; those times in my life when I burn everything to the ground and build a new. There are always consequences to this drama but sometimes I just snap. Most people around me hear at least one pent up grievance . It feels like I can’t hold anything in any longer. Sometimes I’m extra dramatic. Last year I snapped. I let people get to me. I felt bullied. I felt like it was time to stand up for myself. I hear the song Way Too Far by Korn on repeat. I took things too far. I got too angry.

In this blog I want to be real. Yes, I want to talk about the joys of parenting, however, I want to relate the human side of me. Instagram just shows cute cards, colourful lipstick, and adorable little humans. It’s real but it’s not everything. Sometimes I wish there wasn’t more to say. Sometimes I’m embarrassed by my hot headedness. It has definitely gotten me in trouble from time to time. My father once described someone as “great with children, bad with adults”. This was me. My kids could destroy the place without me blinking but I was extra prickly with the rest of my family.

As much as I wish things could have been different and that I didn’t look so insane, I think of those times as growing pains. In fact, what came of it was great growth. My husband and I are in a place that is better than ever. I hear myself saying “I wish last year never happened but I don’t know how we could have gotten where we are otherwise”. There are people who were in my life who are no longer. I went through a grieving period but now I see the good in it.

The people I lost had issues with me for years. I’ve known since high school that people either really love me or really hate me. I have one of those big personalities that are sometimes grating. I can get over hyper at times, or you could say, I am creative, imaginative and inspired. Love me or hate me, it is what it is. I will probably blow up every few years. I may even act crazy. If you love me you will accept it.

So now I have been starting over from scratch. I redid all my social media. That was kind of depressing, but it is coming along now. As much as I regret giving up social media during the shit storm last year, I think I am doing a better job now. I’m learning and growing. I’m only in the beginning phases of where I want to be, but that’s okay, because I see it coming along. If it doesn’t workout, well, I’ll start over.

Although I will always have many regrets, I wouldn’t be where I am without it. Where am I that is so glamourous that I can accept all my missteps? I have an amazing husband who just keeps getting better somehow. I have two super great kids who used to be sick with FPIES but who are healthy now. I have a good part time job that I could actually see myself doing for a long time. I have a beautiful apartment I may never want to move out of. I get to do crafts and art with my kids for hours a day in a beautiful corner of said apartment. Life is good.

I know that at some point things will change. I may have another phoenix moment. I may lose my temper and go way too far again, but I’m working on it. I’m working on just being happy and grateful. I am learning to accept the past and move on. I am becoming a better human every year.

Have you started over? What did you learn from it?

A Childish Wish

“Go to an island and have another baby. I love you mommy.” The thought, the dream awoken, shaken, I can’t forget. The childish fantasy that having a baby sister was simple. The no thought of consequences or of feelings for her baby brother. In that moment, she was telling me I wouldn’t be breastfeeding Gavs anymore. No more boobies for my little man. I stood in the forest crying. It all felt too real. Somehow, I knew that I had gone too far. Somehow, I knew it was time to stop. I had a journey ahead of me. My own Dark Tower quest. I didn’t know when I would be home. A calm washed over me though. I knew my kids would be safe. I knew I trained them well. I knew we were at war and the time had come. Then I woke.

A few months before, Gavin kept ripping two keys off my laptop keyboard. Shift. Control. I would put them on, and he would do it next chance he had. You could say that was when it all began. The crazy. The path to total insanity. Let’s ruin my reputation and be off the wall because something strange is occurring. Yes. Maybe that really did mean something. Maybe the kids were as fed up as I was. Shift Control. Yes. Now was the time.

I wanted a new start. Was it so crazy to think he wanted one too? The first year of his life was terrible and petrifying. He was born sick. He had FPIES, a severe case. Food Protein Induced Enterocolitis Syndrome. At some point we were up to 25 food allergies, including through breastmilk. If I were him, I would want to forget all the pain, vomiting, and diarrhea. All the dumbass doctors who were useless. All the people telling us that it is normal for little babies to throw up. On the other hand, we did our best to show him love and affection. We nursed endlessly to help his sore, swollen throat. We did everything we could to make it okay. To make him okay. No matter what the intention or coincidence, there he was, always with a grin and the shift control keys.

Ellie had talked about wanting another baby a few times. This time she wanted a sister. That really would never happen with my husband. He had a vasectomy while I was pregnant with Gavin. I hear a lot that we have the “millionaire’s family”. A boy and a girl. At the time though, we didn’t know what we were having. In a way, I hoped for a girl. I wanted them to be able to share a room. We have a nice two bedroom apartment with a perfectly painted girl’s room. Three of the walls are blue to make it more unisex though. The furniture and the last wall are all ombre purple. The double bunk bed is covered with Frozen bedsheets. Elsa and Anna over our pillows.

When Greg and I met, we wanted three children. Shall I say I wanted three children and he said that was cool. He himself had three sisters and a ton of pets growing up. After our daughter was born we quickly thought one was enough. We briefly tried for a second but I was breastfeeding too much. We planned our wedding and put ideas of more children to the side. As the wedding approached, and all the planning was done, I yearned for another child. We talked about it a lot and decided that it would be nice to be pregnant at the wedding, so that both my children would technically be there. Maybe that was my childish wish. Impulsive in a way. Nothing was changing my mind. My wish came true. I found out two weeks before the wedding, just a few days before my bachelorette party. That really put a damper on the party, all the sobriety and such, but I was too excited to care.

Greg thought four was a perfect family. I secretly hoped for twins. Four, when you are having a rough day, you each get one to deal with. Four, you get deals when going on vacations and hotels. I will never forget Greg’s appointment to meet the vasectomy doctor. I insisted on meeting the doctor with him to make sure we were all comfortable before the surgery. On the way there, Greg took the wrong road and I got extremely car sick. As we sat waiting for the doctor, I could not calm my stomach. I ended up having to excuse myself, missing his whole appointment. Apparently, they don’t normally do vasectomies on young guys but between the sounds of me hurling and Greg saying that I was 18 weeks pregnant, the doctor agreed. She gets terribly sick while pregnant. We are really done. Hurl. Oh yeah, sounds bad, okay. I can imagine the awkward conversation.

In truth, beyond all reason and judgement, I want another baby. I shouldn’t have another baby. My children and I all have FPIES. Gavin is perfectly healthy now. Ellie and I have issues on and off. Gavin could have died from the extreme case he had but recovered in record time. Ellie and I would have never gotten diagnosed if it wasn’t for her baby brother. It was all quite the miracle in disguise.

Ellie was breastfeeding and refusing to wean. Like nuclear level intensity, refusing to wean. I tried to find a family doctor who supported extended breastfeeding but couldn’t. After nine meet and greet appointments I gave up. When Gavin was born, we did a lot of tandem breastfeeding. It was nice. At two weeks old we were sent to a lactation consultant at the hospital. He was making this squeaky noise and he had lost half a pound. Down to 5.5 lbs from 6.

Going to the appointment gave me anxiety. It was at the hospital. Gavin was born at home. Would another professional shame me for breastfeeding my daughter? She was only three. A baby still to me. I knew I had lots of milk for them both. At the end of the day though, I would have followed any of their advice. I wanted my tiny string bean to be okay. The lactation consultant watched me feed him and hold him. She weighed him. She could see how exhausted he was. He had Laryngomalacia, a baby throat condition. Breathing and eating were more effort for him. He would have to see a pediatric ENT. She said that tandem breastfeeding was the best thing that could have happened. She said if it wasn’t for my daughter, the way he was too tired to eat, I wouldn’t have had much milk come in. Ellie was keeping my supply up and helping the milk come out easier. The consultant suggested we feed him every two hours, 24 hours a day. Yes, 12 feeds a day. On top of that, offer him a bottle of pumped milk at the end of each feed. After a few days he was weighed, and his weight had shot up. After two weeks, we were allowed to stop the bottles.

Ellie got Gavin milk, Gavin got Ellie and I diagnosed. It feels like we were made for each other. The most intense part about it was Gavin, as it turns out, was allergic to formula. Not just Walmart formula. Formula that you need a prescription for and that is $70 a can because it is hypoallergenic, not covered by insurance. I often wonder about all the things that had to go right for my tiny 37 week 6 day baby to survive. We were so lucky to have midwives and a homebirth. What if he was born in the hospital? What if he ended up being tube fed formula at some point? Would he have died? Even his first poop was projectile diarrhea. Was he sick in the womb? He must have been. My placenta was three times normal size but looked totally healthy and meaty. Was it overcompensating? Did he need to be overfed to be nourished?

If I had another baby, how sick would I be? How sick would he/she be? How much more could we withstand. It’s just a hard, sad realization to know I’m done. I don’t want to be done with this phase of my life. I just love babies, maybe too much. That’s okay with me though because my son is alive and my daughter is healthier now. I must have done something right. Maybe this is how baby Gavin feels. In all the suffering there is so much joy. Wanting a fresh start but not wanting to let go. Maybe he just wants a toy car. Maybe it’s all me stressed and worried, overanalyzing. It’s over. How do I let it go? How do I move on?